So, I really apologize for being MIA the last few weeks. I have been in a FUNK, a really big crippling FUNK, one that has been almost impossible to come out of. And I haven't felt so awful in a very long time. I told my husband I am having a mid-life crisis, one without the love affair or need for a fancy car. I am not unhappy or dissatisfied with life whatsoever, but just stressed to the MAX. And as my birthday was approaching, I had that familiar fear "I will someday die and leave my profoundly autistic child motherless" feeling again. I am not proud of these feelings. The fear is so bad at times I am unable to even pray...and I hate this most of all.
My brother says I am obsessed with this fear of dying, and sometimes he is right. True, I drive my family nuts with my irrational thoughts and it's hard to break away from them sometimes. I am thankful my birthday has passed and the weather is somewhat stabilizing, here in New York.
This new preoccupation all started when my neighbor, aged 44 years, died of a heart-attack in front of his wife and young children, back in February. The dear man has no symptoms and no previous condition that was known. He leaves behind a heartbroken spouse and two beautiful kids. This has affected me more than I can say. This ill-fated event was the start of the cascade of individuals in our town who unexpectedly died and left their precious families behind. All of them were tragically under the age of 50. How can this be happening so often lately?
In the last 9 months I have been to a breast specialist twice (my mother is a breast cancer survivor and I'm really good at freaking myself out) and a very knowledgeable holistic practitioner who put me on a gluten free/corn free/casein free diet to perhaps help alleviate this terrible anxiety. I have lost a few pounds and feel really well and take various supplements. I walk several miles a day and I hope I will be able to keep it up once the kids are out of school. More importantly, I try to focus on the spiritual/emotional end of all of this and have been back to my fervent prayer life, which I have missed immensely. In an attempt to reason with myself, I acknowledge these fears and nurture my person whenever possible.
When you have a special-needs child you fear getting older and losing control. It's not the wrinkles that may come, it's not the graying hair (shockingly, I don't have MUCH YET!), and it's not the birthday number in and of itself that sparks the worry. The reality of just being human and eventually leaving the planet is a scary thought, especially when young and seemingly healthy individuals are dying in their 30s and 40s right before your eyes. I do not remember my parents living with this fear, but maybe they had it too, and I just did not comprehend their worry at that time.
Maybe, for us, it's the constant sleepless nights (our autistic son has always had sleep issues), and perhaps our adrenal glands are FRIED as a result of all the stress and lack of rest, I do not know. But I am trying to have FAITH, trying to remain POSITIVE and OPTIMISTIC that God in His mercy will continue to help us as we experience this big adventure He has laid before us. This exhausting beautiful life with our son and his Autism...one I wouldn't trade for all the world. So, for now, I am back in the saddle, and I hope I will continue on this road for a long time as devotedly possible as I can be. Hopefully I can continue writing and Jack can be proud of me.
May You Always Recognize The Blessings
Thursday, June 6, 2013
Friday, March 8, 2013
Siblings Are Autism Victims Too
When my middle son Joe was nine months old his first word was, "Jack." He said it lovingly, with eyes beaming, and drooly fingers pointing to his older brother, who is six years older and autistic. For the longest time, Jack was Joe's favorite person, and Jack tolerated him the best he knew how.
I remember clearly one incident where Jack mustered up all his strength and picked up Joe in his walker, and moved him to the other side of the kitchen, just to escape him. Other times Jack ran and got Joe's pacifier and shoved it into his mouth, as to reduce the noise baby brothers create. But Joe was persistent. To him, Jack was Jack, and he loved his big brother dearly, without any reserve or noticeable resentment that Jack was "different."
Joe was probably two and a half when he started asking questions about his older sibling. He was in the bathtub after a busy day, and he asked me why Jack didn't speak or play with him. It took all I had in me at that moment to explain to him that Jack's brain worked a little bit differently and that Jack was handicapped. In time Joe had a bunch of very appropriate questions:
"Was Jack born this way?"
"Did God make Jack?"
"Will he always be autistic?"
"What happened to him? Will it happen to me too?"
Over the years I did my best to answer him. But the one inquiry that hurt me that most was: "Will Jack ever want me?" I took a deep breath and hoped I could make him understand that although Jack had autism, he still loved us very much, even if he was quiet and distant. I told him that God had given him a very special role because in many ways he would be the "Big Brother" that Jack did not have. Joe fell silent for a moment and then looked at me with large sleepy eyes: "Don't worry, Mommy. I promise I will take care of Jack." And I felt like my heart was ripped out my chest.
In time, I saw Joe keep his promise. He held Jack's hand in parking lots and assisted him at birthday parties. He introduced Jack to his friends and spoke for him when he didn't have the language to express a need. In some ways, Joe was Jack's hero, and, to this day, they have a special bond.
Our youngest son, Gerry Michael, was not as easily accepted by Jack. A noisy toddler and preschooler, Jack did not take to him readily. I cannot say they are close at the present time, and I do not know if they will ever be. Easily startled by Gerry's tantrums, Jack can still run away screaming, with his hands over his ears. They currently have little to do with each other, but that might be an age difference thing, in addition to the communication challenges.
Jack has received much of our attention due to appointments, lifestyle, therapies, and special accommodations. It has often concerned me that his two younger brothers might one day be resentful of all the time and commitment given to their special needs sibling. I see some people shunning my two younger children because of their older brother and it hurts me deeply.
Which is the larger point. Autism isn’t just a health crisis; it’s a family devastation that impacts all members. Sometimes the impact on siblings can be positive as many learn compassion and enter helping professions later on. My little ones are learning some hard lessons very early in life and display maturity beyond their years. My husband and I do our best to give each child what they need and encourage all three boys to embrace and share their talents. We try to spend quality time with each of them on a regular basis. But it's tough some days, its' really tough, not knowing what the future will bring. Until we recognize autism’s immense effects and attend to the special needs of the whole family, we will not really be dealing with the far-reaching but deeply felt impact of this disorder.
"Will Jack ever want you? I said to Joe one day. "He DOES want you. He will always want you. I am sure of it...and I am always here for you."
"I know, Mom," he answered with a smile..."You are the best mom there is...I am sure of it also..."
May You Always Recognize The Blessings...
I remember clearly one incident where Jack mustered up all his strength and picked up Joe in his walker, and moved him to the other side of the kitchen, just to escape him. Other times Jack ran and got Joe's pacifier and shoved it into his mouth, as to reduce the noise baby brothers create. But Joe was persistent. To him, Jack was Jack, and he loved his big brother dearly, without any reserve or noticeable resentment that Jack was "different."
Joe was probably two and a half when he started asking questions about his older sibling. He was in the bathtub after a busy day, and he asked me why Jack didn't speak or play with him. It took all I had in me at that moment to explain to him that Jack's brain worked a little bit differently and that Jack was handicapped. In time Joe had a bunch of very appropriate questions:
"Was Jack born this way?"
"Did God make Jack?"
"Will he always be autistic?"
"What happened to him? Will it happen to me too?"
Over the years I did my best to answer him. But the one inquiry that hurt me that most was: "Will Jack ever want me?" I took a deep breath and hoped I could make him understand that although Jack had autism, he still loved us very much, even if he was quiet and distant. I told him that God had given him a very special role because in many ways he would be the "Big Brother" that Jack did not have. Joe fell silent for a moment and then looked at me with large sleepy eyes: "Don't worry, Mommy. I promise I will take care of Jack." And I felt like my heart was ripped out my chest.
In time, I saw Joe keep his promise. He held Jack's hand in parking lots and assisted him at birthday parties. He introduced Jack to his friends and spoke for him when he didn't have the language to express a need. In some ways, Joe was Jack's hero, and, to this day, they have a special bond.
Our youngest son, Gerry Michael, was not as easily accepted by Jack. A noisy toddler and preschooler, Jack did not take to him readily. I cannot say they are close at the present time, and I do not know if they will ever be. Easily startled by Gerry's tantrums, Jack can still run away screaming, with his hands over his ears. They currently have little to do with each other, but that might be an age difference thing, in addition to the communication challenges.
Jack has received much of our attention due to appointments, lifestyle, therapies, and special accommodations. It has often concerned me that his two younger brothers might one day be resentful of all the time and commitment given to their special needs sibling. I see some people shunning my two younger children because of their older brother and it hurts me deeply.
Which is the larger point. Autism isn’t just a health crisis; it’s a family devastation that impacts all members. Sometimes the impact on siblings can be positive as many learn compassion and enter helping professions later on. My little ones are learning some hard lessons very early in life and display maturity beyond their years. My husband and I do our best to give each child what they need and encourage all three boys to embrace and share their talents. We try to spend quality time with each of them on a regular basis. But it's tough some days, its' really tough, not knowing what the future will bring. Until we recognize autism’s immense effects and attend to the special needs of the whole family, we will not really be dealing with the far-reaching but deeply felt impact of this disorder.
"Will Jack ever want you? I said to Joe one day. "He DOES want you. He will always want you. I am sure of it...and I am always here for you."
"I know, Mom," he answered with a smile..."You are the best mom there is...I am sure of it also..."
May You Always Recognize The Blessings...
Wednesday, March 6, 2013
IEP Survival Advice
Okay, it’s that time of year again. Time to don your heavy armor and take out all your ammo and walk into one of the most important meetings you will attend as a special-needs parent...the dreaded yearly IEP. For those of you just coming onto the scene, this is short for Individual Education Plan and we well-versed parents know the outcome of this meeting will have a large influence on whether the next year of our child’s life will be productive, happy and safe. And it's enough to make our heads spin and stomachs hurt for a week or more leading up to the big day. The task seems undaunting, but with a little bit of preparation, you will secure what your child needs. I have talked to many parents and professionals over the years and have taken their advice seriously.
Here is a Top Ten List of what has worked for me and other caregivers I know:
10) Calm down! It is tough, but try not to be nervous. Remember, the calmer you are, the better you can think, listen and interact. Don't go in expecting to have to fight. Go in with the attitude everyone wants the best for your child. At the same time, you must be prepared to interject and argue. Be ready to provide rational arguments for what your child needs.
9) Always get a draft copy of the IEP before the meeting. This will allow you and your support team time to process all the information and draft notes. Go in armed with all information you need to get your child the services they require. Listen to your gut. Stand firm, take a deep breath, listen, and do not accept anything you feel is not right or beneficial.
8) Request draft copies of goals, accommodations, and present levels of academic/functional performance ahead of time so you are prepared before the meeting.
7) Stick to your guns and don't let them persuade you easily. Ask questions and make sure you understand the answers. Know what you want, but always be open to hear what the committee has to say and offer.
6) Bring an educational advocate with you.
5) Bring your husband with you. It is good for them to see you both as an united front, working together for the benefit of your child. (I hate to admit this, but sometimes a man is a little bit more intimidating as well).
4) Having a case worker through your local developmental disability organization at meetings is priceless. They know of a plethora of options and resources and will fight for what your needs child with you.
Here is a Top Ten List of what has worked for me and other caregivers I know:
10) Calm down! It is tough, but try not to be nervous. Remember, the calmer you are, the better you can think, listen and interact. Don't go in expecting to have to fight. Go in with the attitude everyone wants the best for your child. At the same time, you must be prepared to interject and argue. Be ready to provide rational arguments for what your child needs.
9) Always get a draft copy of the IEP before the meeting. This will allow you and your support team time to process all the information and draft notes. Go in armed with all information you need to get your child the services they require. Listen to your gut. Stand firm, take a deep breath, listen, and do not accept anything you feel is not right or beneficial.
8) Request draft copies of goals, accommodations, and present levels of academic/functional performance ahead of time so you are prepared before the meeting.
7) Stick to your guns and don't let them persuade you easily. Ask questions and make sure you understand the answers. Know what you want, but always be open to hear what the committee has to say and offer.
6) Bring an educational advocate with you.
5) Bring your husband with you. It is good for them to see you both as an united front, working together for the benefit of your child. (I hate to admit this, but sometimes a man is a little bit more intimidating as well).
4) Having a case worker through your local developmental disability organization at meetings is priceless. They know of a plethora of options and resources and will fight for what your needs child with you.
3) Provide refreshments for all!!!
***1) Don't sign the IEP unless you are in total agreement with it. Know the special needs laws in your state. If you are not happy with the recommendations, table the meeting and reconvene at another time. They cannot legally make changes to your child's services until new goals are put on paper. Advise them you are consulting with a special needs lawyer.
Remember, parents, the goal is to provide your child with all the proper supports in the least restrictive environment. Changes in the DSM-5 criteria are going to bring additional challenges for more high-functioning children. Time to find those boxing gloves...DSM-5 will likely have a radical impact on autism diagnosis and qualification for school and mental health services.
You are your child's best advocate, and if you are new to this autism journey, you are about to get a crash course on advocacy, persistence, stamina and communication! If you were timid before, it's time to come out of your cocoon! As a parent of a special child you have two choices: 1) to be intimidated and accept the decisions made by others for your child or 2) to do your research and stand up for what you want. You already made a difference by showing up to the meeting...now come out of your corner and FIGHT NICELY. Your child may never be able to thank you with words...but you'll know. Oh, yes, you'll know.
Maybe You Always Recognize The Blessings...
Sunday, March 3, 2013
Monday, February 25, 2013
Unexpected Sunday Blessings
So, after years of saving funds, we have finally refinished our hardwood floors in two rooms on the main level of our home. Most of our existing furniture is crammed tightly into the dining room and includes the piano, one of the sofas, and some miscellaneous other "stuff." The other living set is now crammed into the kitchen, along with our regular make up of appliances and kitchen table with chairs. We need to live this way until the floors completely cure and this can take up to 15 days. The extra-cozy space is making all of us a little bit loony...all, surprisingly, except for Jack.
Once upon a time all of this rearranging have been very very worrisome for Jack and he would have cried with all the chaos and mixing up of what he is used to. But he is easily going about his business in his room doesn't seem the least bit affected by the mess in the middle of the house. Quite frankly, he is handling the change better than the rest of us.
We went to Friendly's after church on Sunday and a tall and rather chatty autistic adult about the age of 20 came over to me and asked me my name. He proceeded to ask me the names of all the children and needed to know their ages. He quickly and correctly calculated the exact year of birth for all of them and seemed really proud of himself for doing so. My middle son turned to me and whispered lovingly, "He is a bit like Jack, only taller." We found out his name and eagerly shook his hand. Before we were whisked away to our table, my eyes met those of his father's and held his gaze for a silent moment.
Our new friends sat to our right for the duration of lunch and we exchanged smiles and waves from across the tables. And I thought to myself, "So, this is what it could be like someday with Jack." And as I shared these thoughts with my husband I couldn't help but smile... A LOT.
"We can DO this," I think more often now.
Jack is always making progress and is not even the least bit upset about the hullabaloo on the first floor. He may always be different and probably need assistance with the most basic things, but he seems happier with himself and the world, and much more tolerant...more eager to reach out to others, and that is HUGE, as far as I am concerned. No, he may not live the life parents dream of for their children, but will have his place in the world and live with a happy heart and open mind.
Now, if only the rest of us survive the cramped quarters these next few weeks!
May You Always Recognize The Blessings.
Once upon a time all of this rearranging have been very very worrisome for Jack and he would have cried with all the chaos and mixing up of what he is used to. But he is easily going about his business in his room doesn't seem the least bit affected by the mess in the middle of the house. Quite frankly, he is handling the change better than the rest of us.
We went to Friendly's after church on Sunday and a tall and rather chatty autistic adult about the age of 20 came over to me and asked me my name. He proceeded to ask me the names of all the children and needed to know their ages. He quickly and correctly calculated the exact year of birth for all of them and seemed really proud of himself for doing so. My middle son turned to me and whispered lovingly, "He is a bit like Jack, only taller." We found out his name and eagerly shook his hand. Before we were whisked away to our table, my eyes met those of his father's and held his gaze for a silent moment.
Our new friends sat to our right for the duration of lunch and we exchanged smiles and waves from across the tables. And I thought to myself, "So, this is what it could be like someday with Jack." And as I shared these thoughts with my husband I couldn't help but smile... A LOT.
"We can DO this," I think more often now.
Jack is always making progress and is not even the least bit upset about the hullabaloo on the first floor. He may always be different and probably need assistance with the most basic things, but he seems happier with himself and the world, and much more tolerant...more eager to reach out to others, and that is HUGE, as far as I am concerned. No, he may not live the life parents dream of for their children, but will have his place in the world and live with a happy heart and open mind.
Now, if only the rest of us survive the cramped quarters these next few weeks!
May You Always Recognize The Blessings.
Friday, February 15, 2013
Random Thoughts The Day After Saint Valentine's Day
A few days ago, I wrote a bit about Jack and his blossoming love of women. I recounted the great pain this often causes me, due to the rejection and reactions he is subjected to. These last few years I have taken it for granted that he was not at a place where he would comprehend or care about the mean words or obvious stares from the teenage girls he admired. Sometimes I am not so sure about this, now that he is older.
About two years ago, a young mentor working with Jack taught him how to roller skate, and he became addicted to it. Every day he would ask when she was coming back because he wanted to go roller skating. I was more than pleased about this, as participation in sports is not something that has worked out well for him. I supposed skating ranked high on his list of favorite things to do because he didn't have to interact with anyone. Or so I thought.
One day, I was invited to tag along with my other two boys, so I could see Jack skate for myself. Initially I was grateful for the benefit of the workout he was getting-and the potential sleep we all might have that evening as a result of it. We happily cheered him on until Jack's mentor called me into the center of the rink.
And there, in front of us, Jack was holding hands with a pretty red-haired, petite freckled-face girl. Our mentor approached her and said some words I did not hear, and suddenly they were skating together. One, two, three times she led him around, and after the song was over, she grinned and said, "Goodbye, Jack," as she skated off with her mother. And he stood there, beaming, as our mentor cried with me, in the middle of all those people going by. She hugged me and said, "Jack had a date! Jack had a date!" and I brushed the tears away from my eyes as I gratefully waved to the parent of the beautiful angel-girl who had just made my son's day. Jack skated over and quickly said, "I want to go home now," and we left in happy silence.
There are two basic innate human needs that came to me yesterday, on the feast of St. Valentine. We all desire to be loved, and we all want to be accepted for who we are. This is true for all people on the planet earth, no matter what level of ability you may possess. We have the power to lift other humans up in spite of their short-comings in the eyes of the world, but must see through the veil that often hides the beauty that may lie deep inside them. What a difference even a stranger can make when they exercise kindness and compassion. Like that little red-haired girl.
Jack is off from school today and we are going on a "date to the diner" where he will eat only the insides of the waffles, and I will bring my own green tea from home because I like it, and that is who I am. And I'm okay as far as Jack is concerned, and he is one great judge of character, so that is enough for me.
May You Always Recognize The Blessings
About two years ago, a young mentor working with Jack taught him how to roller skate, and he became addicted to it. Every day he would ask when she was coming back because he wanted to go roller skating. I was more than pleased about this, as participation in sports is not something that has worked out well for him. I supposed skating ranked high on his list of favorite things to do because he didn't have to interact with anyone. Or so I thought.
One day, I was invited to tag along with my other two boys, so I could see Jack skate for myself. Initially I was grateful for the benefit of the workout he was getting-and the potential sleep we all might have that evening as a result of it. We happily cheered him on until Jack's mentor called me into the center of the rink.
And there, in front of us, Jack was holding hands with a pretty red-haired, petite freckled-face girl. Our mentor approached her and said some words I did not hear, and suddenly they were skating together. One, two, three times she led him around, and after the song was over, she grinned and said, "Goodbye, Jack," as she skated off with her mother. And he stood there, beaming, as our mentor cried with me, in the middle of all those people going by. She hugged me and said, "Jack had a date! Jack had a date!" and I brushed the tears away from my eyes as I gratefully waved to the parent of the beautiful angel-girl who had just made my son's day. Jack skated over and quickly said, "I want to go home now," and we left in happy silence.
There are two basic innate human needs that came to me yesterday, on the feast of St. Valentine. We all desire to be loved, and we all want to be accepted for who we are. This is true for all people on the planet earth, no matter what level of ability you may possess. We have the power to lift other humans up in spite of their short-comings in the eyes of the world, but must see through the veil that often hides the beauty that may lie deep inside them. What a difference even a stranger can make when they exercise kindness and compassion. Like that little red-haired girl.
Jack is off from school today and we are going on a "date to the diner" where he will eat only the insides of the waffles, and I will bring my own green tea from home because I like it, and that is who I am. And I'm okay as far as Jack is concerned, and he is one great judge of character, so that is enough for me.
May You Always Recognize The Blessings
Tuesday, February 12, 2013
Vaccine Court Awards Yet More Millions To Children Who Developed Autism
The autism/vaccine debate has been been a hot topic since before my son was diagnosed 12 years ago. I submit this blog for your review with undying respect for parents with children living with autism and their families. Many of my friends have vaccinated their affected children according to schedule and feel the assault on their young bodies contributed to the autism that followed. I am not a doctor and make no claims either way. Below you will find our story. It is a repeat version of the thousands I have heard from many concerned and disheartened moms and educators I have been privileged to meet.
Over the years, I have been asked (repeatedly) by parents and professionals alike if I believed my son's autism was caused by one or more of the routine vaccinations given during infancy. It seems to be a particular topic of fascination for my friends of children who developed normally. Some of them are actually offended when I offer my opinion: "I do not think they were the only factor, but yes, they probably contributed to his disability." These parents are among the most intelligent I know, and I am glad for the peace of mind they have when they tuck their children in at night. "My doctor says they are safe!" In their defense, maybe I'd be reciting the same line, if my Jack wasn't the 1 in 88 diagnosed with this lifelong and devastating illness.
I recall a sunny day in autumn, many years ago now, when Jack was almost one and I took him him for his one year physical. We would leave Staten Island for good two weeks later, and I wanted to meet with his pediatrician one last time, before I had to move and research another one. I remember distinctly a pretty and jolly nurse coming into the room and announcing it was a good idea that Jack get his MMR shot right then, being it would probably take me a little while to locate a new doctor up in Orange County. She said not vaccinating him at this age was endangering his very life. I was a new mother in love with my precious baby boy, and, of course, I would anything to protect him.
Prior to the jab, she presented me with a consent form. "What is this?" I needed to know. "Oh, that," she said casually. "That is a form we need you to sign releasing the doctor from any blame in the unlikely event that your son has an adverse reaction to the shot. It's nothing."
"Excuse me?" I managed to say. "I do not know how I feel about this. I am going to need to home and speak with my husband before he receives this shot." This was before we owned a cell phone and I was alone in the office, making what I perceived a very important decision. Then she hit me full-force. "Oh, you are a young mother and have your concerns, I'm sure. But the doctor knows best, and it's a one in a million chance someone is actually affected. Your baby is healthy-it won't be your son." And with that reassurance, I signed the paper and what might have been Jack's life away at the same time, only I would never be sure in the future. He was given the shot and an "Okay, he looks great!" by the doctor, and off we went.
That evening I told my husband what happened and he almost convinced me I made the right decision, but I was still very shaken by the nurse's words. In a very short time we would leave New York City forever and move to the land of Orange County and the beautiful Hudson Valley, and there was much to do. Two weeks later, in the new house, we hosted a huge party for Jack in honor of his first birthday. Our closest friends and family were surrounded by balloons and unpacked boxes, and as we snapped pictures, I had an uneasy feeling in my stomach I could not comprehend. Not so long after, two months after a DPT shot, Jack contracted what seemed like a persistent stomach virus that lasted for six months, even when the initial fever went away. Our new doctor told us the fowl-smelling diapers were caused by teething...but I didn't believe that for one minute. His eye contact was fleeting and his few words started to disappear. He seemed lost, confused, and he started to flap his arms. I didn't tell my husband what I feared most, and I started the ball rolling with Early Intervention Services, just to be sure, as they told me, that everything "was all right." But we know how that all went, and a visit to a developmental pediatrician confirmed what the therapists already knew. A blood test four years later revealed his titers for MMR were insanely off the charts. To think what a few viruses at once could do to a developing brain at a crucial point in development! I can still cry.
Fast forward 13 + years and my son Jack still struggles with profound autism. As an educated mother and advocate, I have read probably everything there is to digest with regards to the vaccine controversy. And my feeling remains the same. Yes, I do believe with all my being that the vaccinations given early in life were, in part, responsible for Jack's illness. Is there a blood test that will tell us for SURE...no, it does not exist. I also believe there are many other causative factors including genetics, pollution and chemical contamination that can lead to an autism diagnosis in an affected child.
To this point of this blog, it does make me wonder why some families are secretly being awarded millions of dollars because their children were injured by vaccination...PERMANENTLY. I am happy for their handsome awards. Sure, those dollars will help insure a child's therapy and lifelong care, but can any amount of money heal a broken family and restore what could have been a bright future? Is this our government's answer to the autism epidemic? Silence them with a fat lump of change and move on? If a causative factor was not suspected, then WHY the compensation? Sounds like a possible cover-up to me! Remember, vaccines are big money makers. I don't know about you, but I'm pretty disgusted.
Here is a link to a recent article regarding two more children compensated for the loss of their chance of a normal and productive life:
http://www.huffingtonpost.com/david-kirby/post2468343_b_2468343.html
In addition, studies are being conducted to prove that the aborted baby DNA found in some vaccines is responsible for the rise in autism.( It doesn't take a rocket scientist to figure out injecting people with the DNA from another people could be a risky thing). Not the mention the pro-life issue important to many. Here's another well-written piece for your consideration:
http://www.cogforlife.org/autism/
For your discernment. It has literally taken me many, many years, but I have finally freed myself from the painful guilt I suffered due to the decisions I have made regarding Jack's health care in the past. Here, in the Hudson Valley, I have met some of the most awesome parents and friends. Some of them have children with autism, while others do not. We are a unique groups of individuals, with many of us relocating from the city, in search of a better life for our beautiful children. I respect each and every one of them for the many decisions they will continue to make for the well-being of their families. Do I think vaccines given to Jack early in life contributed to his autistic condition? Yes, I firmly do. And you know what? Although I have truly given all up to God in Heaven, I still daydream now and then that I approach that spunky nurse from long ago and give her a piece of my mind. "Damn you," I say, "IT WAS MY SON!"
I cannot change the past, but I can make a difference...Jack can make a difference! I URGE all new parents to take the time and do research. Weigh both the pros and cons of each injection, and make an educated and personal decision about what is injected into your child/when you choose to start vaccinating. I am at peace now (most of the time) knowing that I strive to give my children the absolute best I can...and realize that only God Himself knows the outcome of the choices we make.
May You Always Recognize The Blessings...
Over the years, I have been asked (repeatedly) by parents and professionals alike if I believed my son's autism was caused by one or more of the routine vaccinations given during infancy. It seems to be a particular topic of fascination for my friends of children who developed normally. Some of them are actually offended when I offer my opinion: "I do not think they were the only factor, but yes, they probably contributed to his disability." These parents are among the most intelligent I know, and I am glad for the peace of mind they have when they tuck their children in at night. "My doctor says they are safe!" In their defense, maybe I'd be reciting the same line, if my Jack wasn't the 1 in 88 diagnosed with this lifelong and devastating illness.
I recall a sunny day in autumn, many years ago now, when Jack was almost one and I took him him for his one year physical. We would leave Staten Island for good two weeks later, and I wanted to meet with his pediatrician one last time, before I had to move and research another one. I remember distinctly a pretty and jolly nurse coming into the room and announcing it was a good idea that Jack get his MMR shot right then, being it would probably take me a little while to locate a new doctor up in Orange County. She said not vaccinating him at this age was endangering his very life. I was a new mother in love with my precious baby boy, and, of course, I would anything to protect him.
Prior to the jab, she presented me with a consent form. "What is this?" I needed to know. "Oh, that," she said casually. "That is a form we need you to sign releasing the doctor from any blame in the unlikely event that your son has an adverse reaction to the shot. It's nothing."
"Excuse me?" I managed to say. "I do not know how I feel about this. I am going to need to home and speak with my husband before he receives this shot." This was before we owned a cell phone and I was alone in the office, making what I perceived a very important decision. Then she hit me full-force. "Oh, you are a young mother and have your concerns, I'm sure. But the doctor knows best, and it's a one in a million chance someone is actually affected. Your baby is healthy-it won't be your son." And with that reassurance, I signed the paper and what might have been Jack's life away at the same time, only I would never be sure in the future. He was given the shot and an "Okay, he looks great!" by the doctor, and off we went.
That evening I told my husband what happened and he almost convinced me I made the right decision, but I was still very shaken by the nurse's words. In a very short time we would leave New York City forever and move to the land of Orange County and the beautiful Hudson Valley, and there was much to do. Two weeks later, in the new house, we hosted a huge party for Jack in honor of his first birthday. Our closest friends and family were surrounded by balloons and unpacked boxes, and as we snapped pictures, I had an uneasy feeling in my stomach I could not comprehend. Not so long after, two months after a DPT shot, Jack contracted what seemed like a persistent stomach virus that lasted for six months, even when the initial fever went away. Our new doctor told us the fowl-smelling diapers were caused by teething...but I didn't believe that for one minute. His eye contact was fleeting and his few words started to disappear. He seemed lost, confused, and he started to flap his arms. I didn't tell my husband what I feared most, and I started the ball rolling with Early Intervention Services, just to be sure, as they told me, that everything "was all right." But we know how that all went, and a visit to a developmental pediatrician confirmed what the therapists already knew. A blood test four years later revealed his titers for MMR were insanely off the charts. To think what a few viruses at once could do to a developing brain at a crucial point in development! I can still cry.
Fast forward 13 + years and my son Jack still struggles with profound autism. As an educated mother and advocate, I have read probably everything there is to digest with regards to the vaccine controversy. And my feeling remains the same. Yes, I do believe with all my being that the vaccinations given early in life were, in part, responsible for Jack's illness. Is there a blood test that will tell us for SURE...no, it does not exist. I also believe there are many other causative factors including genetics, pollution and chemical contamination that can lead to an autism diagnosis in an affected child.
To this point of this blog, it does make me wonder why some families are secretly being awarded millions of dollars because their children were injured by vaccination...PERMANENTLY. I am happy for their handsome awards. Sure, those dollars will help insure a child's therapy and lifelong care, but can any amount of money heal a broken family and restore what could have been a bright future? Is this our government's answer to the autism epidemic? Silence them with a fat lump of change and move on? If a causative factor was not suspected, then WHY the compensation? Sounds like a possible cover-up to me! Remember, vaccines are big money makers. I don't know about you, but I'm pretty disgusted.
Here is a link to a recent article regarding two more children compensated for the loss of their chance of a normal and productive life:
http://www.huffingtonpost.com/david-kirby/post2468343_b_2468343.html
In addition, studies are being conducted to prove that the aborted baby DNA found in some vaccines is responsible for the rise in autism.( It doesn't take a rocket scientist to figure out injecting people with the DNA from another people could be a risky thing). Not the mention the pro-life issue important to many. Here's another well-written piece for your consideration:
http://www.cogforlife.org/autism/
For your discernment. It has literally taken me many, many years, but I have finally freed myself from the painful guilt I suffered due to the decisions I have made regarding Jack's health care in the past. Here, in the Hudson Valley, I have met some of the most awesome parents and friends. Some of them have children with autism, while others do not. We are a unique groups of individuals, with many of us relocating from the city, in search of a better life for our beautiful children. I respect each and every one of them for the many decisions they will continue to make for the well-being of their families. Do I think vaccines given to Jack early in life contributed to his autistic condition? Yes, I firmly do. And you know what? Although I have truly given all up to God in Heaven, I still daydream now and then that I approach that spunky nurse from long ago and give her a piece of my mind. "Damn you," I say, "IT WAS MY SON!"
I cannot change the past, but I can make a difference...Jack can make a difference! I URGE all new parents to take the time and do research. Weigh both the pros and cons of each injection, and make an educated and personal decision about what is injected into your child/when you choose to start vaccinating. I am at peace now (most of the time) knowing that I strive to give my children the absolute best I can...and realize that only God Himself knows the outcome of the choices we make.
May You Always Recognize The Blessings...
Saturday, February 9, 2013
What Makes A Man
I don't know if he's been hearing it in school this year, but since September, Jack has been asking for me to "shave his mustache." Sometimes he asks several times a day and I caught him a few times looking for the shaving cream. I previously hid all the razors and scissors since he's already taken them to his hair and eyebrows, and I've been terrified he would hurt himself in a bad way. For the last few months he's been desperately trying to remove his facial hair with a washcloth and water. I know he is 14, but I was hoping to wait at least another year to go down this road. He's been doing really well with the other obvious changes taking place and oftentimes I thank God he is not a female. I've had many mixed emotions with this, because I have been reminded over and over again how rough things would be when he was older and we could no longer take care of him. And the clock is ticking fast.
What makes a man anyway? It cannot just be body hair and a deep voice. A real man is responsible for himself and potentially any others that may come into his life. He can hold down a job and communicate with other humans in a mature fashion. But here is my autistic child who certainly resembles a young man, and needs around the clock supervision and care. Biologically, he is still destined to change, as we all age and appear different on the outside at various points in our lives. The difference between another person and Jack is that emotional and mental metamorphosis happen alongside the physical.
A few days ago a mentor took Jack rollerskating but had to remove him from the ring because he kept skating up to girls and grabbing their hands. He is not a big guy, but knows nothing of boundaries, and in his innocence, just wants to skate with them. I've seen him turn his head more than once looking at pretty young things on a beach or at the mall, and we have joked about his love of women. And this is because somewhere he is a man in the making. So, on one hand I am happy about this maturity he is displaying, and on the other hand I am crushed, when the young ladies walk away laughing. Teenage girls are often cruel and a few times now I have felt the need to interject by saying, "He is autistic...he thinks you are pretty." And with my husband's piercing eyes and my father's million-dollar smile, those girls would have been crazy for him, I know, if things were different.
And so, it goes on...
My husband came home this afternoon with an electric shaver, as a gift for Jack. He stopped asking me to remove his mustache a few months ago, but the last few days he has been pretty adamant about it again and the hair is growing in thick and dark. Right before the big moment, I found him sitting in our master bathroom and he said again, "Please shave my mustache." And so, it was done. I held up the mirror so he could see his new face and he beamed from ear to ear. The young man who just shaved his mustache for the first time still needed help in the shower and I lovingly put him in the tub and washed his hair. We called my father and my brother to share the news.
I am sitting alone now, writing this blog, while the kids are playing with their iPads and my husband is shoveling snow. And, I will admit, am having those mixed emotions again...but this time they are accompanied by a little bit of hope, because it finally dawned on me what makes a man. A real man is a good man. A real man is an honest man too. And when Jack stands before God one day, hopefully a long time from now, God will say, "You have been a real man, Jack. Enter into My Kingdom." And so, my prayer now will be that Jack will be the best man he can be, the man he was designed to be, always loving, always gentle, always REAL. That is a dream guy enough for me.
May You Always Recognize The Blessings.
What makes a man anyway? It cannot just be body hair and a deep voice. A real man is responsible for himself and potentially any others that may come into his life. He can hold down a job and communicate with other humans in a mature fashion. But here is my autistic child who certainly resembles a young man, and needs around the clock supervision and care. Biologically, he is still destined to change, as we all age and appear different on the outside at various points in our lives. The difference between another person and Jack is that emotional and mental metamorphosis happen alongside the physical.
A few days ago a mentor took Jack rollerskating but had to remove him from the ring because he kept skating up to girls and grabbing their hands. He is not a big guy, but knows nothing of boundaries, and in his innocence, just wants to skate with them. I've seen him turn his head more than once looking at pretty young things on a beach or at the mall, and we have joked about his love of women. And this is because somewhere he is a man in the making. So, on one hand I am happy about this maturity he is displaying, and on the other hand I am crushed, when the young ladies walk away laughing. Teenage girls are often cruel and a few times now I have felt the need to interject by saying, "He is autistic...he thinks you are pretty." And with my husband's piercing eyes and my father's million-dollar smile, those girls would have been crazy for him, I know, if things were different.
And so, it goes on...
My husband came home this afternoon with an electric shaver, as a gift for Jack. He stopped asking me to remove his mustache a few months ago, but the last few days he has been pretty adamant about it again and the hair is growing in thick and dark. Right before the big moment, I found him sitting in our master bathroom and he said again, "Please shave my mustache." And so, it was done. I held up the mirror so he could see his new face and he beamed from ear to ear. The young man who just shaved his mustache for the first time still needed help in the shower and I lovingly put him in the tub and washed his hair. We called my father and my brother to share the news.
I am sitting alone now, writing this blog, while the kids are playing with their iPads and my husband is shoveling snow. And, I will admit, am having those mixed emotions again...but this time they are accompanied by a little bit of hope, because it finally dawned on me what makes a man. A real man is a good man. A real man is an honest man too. And when Jack stands before God one day, hopefully a long time from now, God will say, "You have been a real man, Jack. Enter into My Kingdom." And so, my prayer now will be that Jack will be the best man he can be, the man he was designed to be, always loving, always gentle, always REAL. That is a dream guy enough for me.
May You Always Recognize The Blessings.
This is the Jackman with me the morning after his big day.
I found him in our master bathroom admiring his face,
minus the mustache. He said, "Take a picture, please."
And so we did. As you can see he was just beaming.
His happiness was such a gift.
Thursday, February 7, 2013
Speak
Tonight, Jack asked to phone my husband at work. He's 14 and this is something that has not happened before. He said, "I need to speak with Daddy, call Daddy now, please." So, of course, I ran to the phone and dialed the number as quickly as my fingers would allow me. Jack could hardly wait for the phone to stop ringing, and I had to remind him to listen for the voice on the other end. He made his dad so happy, and he immediately dropped everything to come home.
Words...
"Use your words, Jack" is a common mantra around here. Similar phrases are used by my two younger sons on a daily basis, "Say what you want, Jack." Or, simply, "What do you need, Jack?" Words have repercussions. Words direct everything in the universe.
I discovered some time ago that most people have no clue what power their words possess. Beyond expressing some need or desire, words have the ability to hurt or heal another human being. And that is why they seemingly hang in the air after an argument or expression of love. Words are remembered long after they are spoken and can have a permanent impact on person they are directed towards. Oftentimes painful memories revolve around what someone said in the past, and not solely their actions.
Words...
They are not just simple utterances or noises we make. There were times Jack did not make a sound and I promised to light my hair on fire if meant I'd get one word, one groan, one "I love you, Momma." For the longest time, the silence won. And when the few words came we celebrated, and danced around the living room. Today, I still encourage him to elaborate and use more complex sentences. And, If Jack didn't have some ability for language, I probably would not be so persistent in demonstrating how to use it in everyday life. There are times he would rather give a one-word answer, but I am determined to help him express himself more. Because of the importance of the words. Modeling language has become a sort of necessary lifestyle in this house. We are truly blessed he has developed some understanding of basic English. There is also the art of listening well...but that is a whole other concept.
Say what you mean to say...
What makes Jack really extra-ordinary in his own right is the meaning behind his words, as few they are, for he says what he truly feels, when he needs to do so. As human beings, we often leave words unsaid, sometimes to the point it becomes too late to say them. Or worse, we shout words in a moment of anger and later wish we hadn't. Words...we must choose them carefully! Or course we want Jack to have more words. But they mean nothing if you don't understand what you saying, so we are working on it. I'd rather not be a person who is "all talk" and no substance, when I can speak with an honest heart, even if it means I am sometimes silent....like Jack.
May You Always Recognize The Blessings.
Words...
"Use your words, Jack" is a common mantra around here. Similar phrases are used by my two younger sons on a daily basis, "Say what you want, Jack." Or, simply, "What do you need, Jack?" Words have repercussions. Words direct everything in the universe.
I discovered some time ago that most people have no clue what power their words possess. Beyond expressing some need or desire, words have the ability to hurt or heal another human being. And that is why they seemingly hang in the air after an argument or expression of love. Words are remembered long after they are spoken and can have a permanent impact on person they are directed towards. Oftentimes painful memories revolve around what someone said in the past, and not solely their actions.
Words...
They are not just simple utterances or noises we make. There were times Jack did not make a sound and I promised to light my hair on fire if meant I'd get one word, one groan, one "I love you, Momma." For the longest time, the silence won. And when the few words came we celebrated, and danced around the living room. Today, I still encourage him to elaborate and use more complex sentences. And, If Jack didn't have some ability for language, I probably would not be so persistent in demonstrating how to use it in everyday life. There are times he would rather give a one-word answer, but I am determined to help him express himself more. Because of the importance of the words. Modeling language has become a sort of necessary lifestyle in this house. We are truly blessed he has developed some understanding of basic English. There is also the art of listening well...but that is a whole other concept.
Say what you mean to say...
What makes Jack really extra-ordinary in his own right is the meaning behind his words, as few they are, for he says what he truly feels, when he needs to do so. As human beings, we often leave words unsaid, sometimes to the point it becomes too late to say them. Or worse, we shout words in a moment of anger and later wish we hadn't. Words...we must choose them carefully! Or course we want Jack to have more words. But they mean nothing if you don't understand what you saying, so we are working on it. I'd rather not be a person who is "all talk" and no substance, when I can speak with an honest heart, even if it means I am sometimes silent....like Jack.
May You Always Recognize The Blessings.
Wednesday, February 6, 2013
Distraught Mother In The Corner, It's Not Your Fault
Today I went out with another special needs mom. She's a veteran, with two sons on the Autism Spectrum, and we haven't seen each other in a while. We picked our favorite lunch spot, right smack in the middle of our respective homes and districts in the event one of us gets a phone call from the school and we have to run. For me, it's always great to get out and speak with a grown person. Not to mention a treat to eat a meal not interrupted by tantrums or outbursts. I can do this more often now because my children are older and attend school full-time.
But to our left, a familiar scene unfolded, as I noticed a younger pretty lady, trying to console a small boy. She was desperately trying to soothe him, and picked him up in her arms and rocked him back and forth even though he was not an infant. The crying did not stop and too quickly the screaming and kicking began. A coffee cup went flying and french fries were knocked off the table. Soon his arms were flailing and he was clinging to her in the most desperate way, upset beyond description. People started to stare and whisper, and the young woman became obviously upset herself. She mustered all the courage she could to lift that precious child and make her way out of the crowded restaurant, tears running down her face.
My friend reached across the table and squeezed my hand tightly. The look in her tired eyes told me what I already knew. Without one word I understood, "That boy has autism...do you remember those days?" And I pushed back my bowl of soup and sat for a moment. We are so well-versed at this point, we are able to sum up and recognize even the highest-functioning child all in a matter of three seconds.
How many times have I wanted to run over to such a woman and embrace her, comfort her, give her my phone number, anything! But like myself of old, they flee quickly from the public eye, feeling distraught and alone, the way I used to be. Other times I have been on line in the supermarket only to have a mother say to me, "I'm so sorry for his behavior...he has autism." What relief on their faces when I tell them I am one of the moms who GET IT.
Distraught Mother in the corner, this is not your fault! I know the nightmare you are living--you have done nothing to make it manifest. You are a good wife and nurturer and your child is blessed to have you. I want to tell you things are going to get better, but only time will tell the extent of your suffering. You will have to work harder at your marriage and cling to God, even when friends seem to abandon you, but you are not alone. You will go on, you have been given a job reserved for saints. You are a warrior.
I know what it's like to cry in the shower, where you hide so no one can hear you. I know what it's like to cry yourself to sleep, night after night, and wonder if your prayers are really heard in the still dark of your bathroom, but this is not your fault. You may never hear the words, but he does, in fact, love you. Some of your questions will never be answered and you will wonder if the hurt will ever go away...it never completely will, but you will find peace when you are older. No, dear desperate mother, this is not your fault. This much I truly know.
May You Always Recognize The Blessings...
But to our left, a familiar scene unfolded, as I noticed a younger pretty lady, trying to console a small boy. She was desperately trying to soothe him, and picked him up in her arms and rocked him back and forth even though he was not an infant. The crying did not stop and too quickly the screaming and kicking began. A coffee cup went flying and french fries were knocked off the table. Soon his arms were flailing and he was clinging to her in the most desperate way, upset beyond description. People started to stare and whisper, and the young woman became obviously upset herself. She mustered all the courage she could to lift that precious child and make her way out of the crowded restaurant, tears running down her face.
My friend reached across the table and squeezed my hand tightly. The look in her tired eyes told me what I already knew. Without one word I understood, "That boy has autism...do you remember those days?" And I pushed back my bowl of soup and sat for a moment. We are so well-versed at this point, we are able to sum up and recognize even the highest-functioning child all in a matter of three seconds.
How many times have I wanted to run over to such a woman and embrace her, comfort her, give her my phone number, anything! But like myself of old, they flee quickly from the public eye, feeling distraught and alone, the way I used to be. Other times I have been on line in the supermarket only to have a mother say to me, "I'm so sorry for his behavior...he has autism." What relief on their faces when I tell them I am one of the moms who GET IT.
Distraught Mother in the corner, this is not your fault! I know the nightmare you are living--you have done nothing to make it manifest. You are a good wife and nurturer and your child is blessed to have you. I want to tell you things are going to get better, but only time will tell the extent of your suffering. You will have to work harder at your marriage and cling to God, even when friends seem to abandon you, but you are not alone. You will go on, you have been given a job reserved for saints. You are a warrior.
I know what it's like to cry in the shower, where you hide so no one can hear you. I know what it's like to cry yourself to sleep, night after night, and wonder if your prayers are really heard in the still dark of your bathroom, but this is not your fault. You may never hear the words, but he does, in fact, love you. Some of your questions will never be answered and you will wonder if the hurt will ever go away...it never completely will, but you will find peace when you are older. No, dear desperate mother, this is not your fault. This much I truly know.
May You Always Recognize The Blessings...
Wednesday, January 30, 2013
The Life In The Day Of Another Special Needs Mom
I just got off the phone with a long-time friend of mine, another special needs mom. She's got two children on the spectrum, and is a single-parent who, on top of everything else, stays up all night making her children gluten-free muffins. I guess she figures she might as well make use of those hours, as autism mommies know-many kids on the spectrum do not sleep and she is up around the clock anyway. She works several jobs to make ends meet and somehow still manages to volunteer her time to Autism Awareness here in Orange County, NY. And I love and admire her greatly.
This incredible lady is one of many single mothers I know who are struggling financially to get her children what they need. Her health is suffering too, and she only has herself to rely on, day in and day out, and she just keeps on going. Her sons need health care and occupational therapy. So her own well-being can wait-the bills are piling up.
One thing that always makes my blood pressure steeply rise is that fact that Autism Spectrum Disorder is not considered a medical condition, therefore, insurance companies do not pay for any of the health care costs. So, heaven forbid, a child has cancer or diabetes, there is health insurance to cover the medical fees. My son needed two types of medication back when and it wasn't covered by insurance even though a medical doctor prescribed it. Does this make any sense at all? None of his therapies or medical interventions were covered either. Walking into a neurologist the first time cost $600. Basically, if your child has autism, you are out of luck. Additionally, you can spend years paying $125 an hour out of pocket for therapy, without help or reimbursement. And you still have to feed them and the rest of your family. End of story. It is a cruel and vicious cycle, because you would try and do anything to help your child. Lately I have heard a few states are looking at insurance reimbursement, and I hope the rest of the country picks up on this one day soon. It's too late for families like us, but it can greatly help all the many children who will have a diagnosis in the future.
There are times I have feared greatly my own health, and my own aging, because I worry about who would ever care for Jack, if something would happen to me, or my husband. The demons have plagued me night and day for several years now, as I am getting older and tire easier. There are things in life that are inevitable, but when you have a special child, the worry is enormous. And I think it's only been my faith in God that has kept me going when I felt like I couldn't face another day of worry and pain.
And so you go on, with a stack of bills three feet high, but you still do it. I am one of the fortunate ones not going it alone because my husband is still by my side. So we yell and fight and muddle through, but we are still here, and I am forever grateful to him because I really prefer having a team member in this game. So I say again, you never know what someone else is going through until you spend a day in their shoes. To all those single parents of special needs children everywhere, you are my heroes and heroines. You will have little fame in the world today, even for all your efforts. Here is the story for all to see.
May You Always Recognize The Blessings
This incredible lady is one of many single mothers I know who are struggling financially to get her children what they need. Her health is suffering too, and she only has herself to rely on, day in and day out, and she just keeps on going. Her sons need health care and occupational therapy. So her own well-being can wait-the bills are piling up.
One thing that always makes my blood pressure steeply rise is that fact that Autism Spectrum Disorder is not considered a medical condition, therefore, insurance companies do not pay for any of the health care costs. So, heaven forbid, a child has cancer or diabetes, there is health insurance to cover the medical fees. My son needed two types of medication back when and it wasn't covered by insurance even though a medical doctor prescribed it. Does this make any sense at all? None of his therapies or medical interventions were covered either. Walking into a neurologist the first time cost $600. Basically, if your child has autism, you are out of luck. Additionally, you can spend years paying $125 an hour out of pocket for therapy, without help or reimbursement. And you still have to feed them and the rest of your family. End of story. It is a cruel and vicious cycle, because you would try and do anything to help your child. Lately I have heard a few states are looking at insurance reimbursement, and I hope the rest of the country picks up on this one day soon. It's too late for families like us, but it can greatly help all the many children who will have a diagnosis in the future.
There are times I have feared greatly my own health, and my own aging, because I worry about who would ever care for Jack, if something would happen to me, or my husband. The demons have plagued me night and day for several years now, as I am getting older and tire easier. There are things in life that are inevitable, but when you have a special child, the worry is enormous. And I think it's only been my faith in God that has kept me going when I felt like I couldn't face another day of worry and pain.
And so you go on, with a stack of bills three feet high, but you still do it. I am one of the fortunate ones not going it alone because my husband is still by my side. So we yell and fight and muddle through, but we are still here, and I am forever grateful to him because I really prefer having a team member in this game. So I say again, you never know what someone else is going through until you spend a day in their shoes. To all those single parents of special needs children everywhere, you are my heroes and heroines. You will have little fame in the world today, even for all your efforts. Here is the story for all to see.
May You Always Recognize The Blessings
Monday, January 28, 2013
The Forecast For Monday Is Snow And Ice
Despite the warnings of a possible early dismissal, I got my children up this morning and sent them on their way. This time I completely ignored my Mommy Instinct to let them sleep in and instead I roused and fed them at the regular time. I weighed all the forecasts and feared they could be wrong and the boys would miss a whole day of instruction, all because of my bad call. Lesson learned-never underestimate the gut feeling of a mom. A couple of hours of precious sleep may depend on it. I did never understand how "half a day" translates into 10:30am dismissal...but here we all are.
The snow turned to ice and Jack is disappointed his mentor is unable to take him out this afternoon. He begged for his shoes and asked to see her, but he is stuck inside with me and his little brothers. He is not happy about this new situation and is stressed out to the max because the day's events have been altered. We made meatballs and had tons of snacks. He's been eating everything in sight and is literally sneaking food behind my back. I am not looking forward to the sugar high that's coming this evening. I am starting to stress too.
These are the days I wished I lived in Florida or New Mexico but I suppose they have their own issues. One friend of ours lives in Tennessee and her autistic son only has school half day, for half the summer. She scrambles to balance working 24/7 with him and living something of a normal life at least for an hour or two a day. What that translates into is being able to eat and think clearly for a relatively small period of time and I know it's not easy for her. Also, I could never get a handle on living in a warmer climate and having the school year end in May. I think that would drive me batty, in spite of the fact it all probably checks out, time-wise, in the end.
Yes, despite the harsh winters, I am so grateful to be living in New York right now. Perhaps it's the place to be when you have a child who suffers with Autism Spectrum Disorder. We have longer schedules, good services, and access to great professionals and specialists. But don't ask me to go outside and make a snowman...that is really pushing it.
(I will continuously pray that everyone everywhere will have access to what they need for their special children.)
May You Always Recognize The Blessings
The snow turned to ice and Jack is disappointed his mentor is unable to take him out this afternoon. He begged for his shoes and asked to see her, but he is stuck inside with me and his little brothers. He is not happy about this new situation and is stressed out to the max because the day's events have been altered. We made meatballs and had tons of snacks. He's been eating everything in sight and is literally sneaking food behind my back. I am not looking forward to the sugar high that's coming this evening. I am starting to stress too.
These are the days I wished I lived in Florida or New Mexico but I suppose they have their own issues. One friend of ours lives in Tennessee and her autistic son only has school half day, for half the summer. She scrambles to balance working 24/7 with him and living something of a normal life at least for an hour or two a day. What that translates into is being able to eat and think clearly for a relatively small period of time and I know it's not easy for her. Also, I could never get a handle on living in a warmer climate and having the school year end in May. I think that would drive me batty, in spite of the fact it all probably checks out, time-wise, in the end.
Yes, despite the harsh winters, I am so grateful to be living in New York right now. Perhaps it's the place to be when you have a child who suffers with Autism Spectrum Disorder. We have longer schedules, good services, and access to great professionals and specialists. But don't ask me to go outside and make a snowman...that is really pushing it.
(I will continuously pray that everyone everywhere will have access to what they need for their special children.)
May You Always Recognize The Blessings
Sunday, January 27, 2013
Tony Bennett
When Jack was four, he started singing "Fly Me To The Moon." It's my all-time favorite song and I sang it to him countless times when he was an infant. Later, after he was diagnosed, I sang it over and over, while exaggerating the words, like everything else, to get a reaction from him. It had reached a point I would light my hair on fire, to do just that.
There is a great dvd entitled, "MTV's Tony Bennett Unplugged," and we gave it to Jack for his fifth birthday. Whenever Jack needed soothing, I'd turn on that concert, and instantly he was happy. To my husband's dismay, I never minded playing it a few times a week because Jack hardly asked for anything specifically, and that dvd was an obvious favorite. My husband would beg, "Please, no more Tony Bennett!!!!" but it played on whenever Jack needed to watch it and before I knew it, he actually started to sing along. Some moms of special needs children credit speech therapists for teaching their children language. I have the likes of Tony Bennett and Frank Sinatra in my arsenal of therapies to boot.
I first developed a love for those beautiful torch songs when I was a little girl, and my uncles played the old records on Sundays at my grandparents' house in Brooklyn, New York. Mr. Sinatra and Mr. Bennett, also of Italian descent, were heroes and comrades, and we looked up to them, because they could, probably before fame, identify with similar struggles found in our family. Or so we imagined on hot summer nights as we listened outside to the music coming from the open window. I can close my eyes tonight and still hear my grandmother singing the beautiful ballads while she cooked in the kitchen, and it is a cherished memory I will never forget. It is no surprise to me I would grow up and sing my children to sleep with these tunes from my happy memory.
Years later, when Jack became a big fan, my brother attended a dinner in Manhattan hosted by the Young Italian-American Club and the one and only Tony Bennett was the guest of honor. Towards the end of the evening, he managed to break through the crowds and media and told this superstar all about Jack's disability and his love for the music. Touched by the words, and unbeknowst to me at that time, Mr. Bennett took down our address and two weeks later we received a gift I would always treasure.
This kindly gentleman, a renowned singer and painter, actually sent Jack a letter with an autographed picture along with four cds. He wrote, "To Jack, Here is a picture with me and my dog. Keep Smiling. Love, Tony Bennett." He also enclosed a note-card for me, a print of one of his famous paintings. Inside he wrote, "To Laura, Never give up, I am praying for you. All My Love, Tony Bennett." Jack loved the cds and I have the precious notes tucked away. I look at them now and again and remember how Tony Bennett sent me a letter. I truly wish I could tell my Grandma Josie about it. She'd probably say, "He's a-nice man."
May You Always Recognize The Blessings
There is a great dvd entitled, "MTV's Tony Bennett Unplugged," and we gave it to Jack for his fifth birthday. Whenever Jack needed soothing, I'd turn on that concert, and instantly he was happy. To my husband's dismay, I never minded playing it a few times a week because Jack hardly asked for anything specifically, and that dvd was an obvious favorite. My husband would beg, "Please, no more Tony Bennett!!!!" but it played on whenever Jack needed to watch it and before I knew it, he actually started to sing along. Some moms of special needs children credit speech therapists for teaching their children language. I have the likes of Tony Bennett and Frank Sinatra in my arsenal of therapies to boot.
I first developed a love for those beautiful torch songs when I was a little girl, and my uncles played the old records on Sundays at my grandparents' house in Brooklyn, New York. Mr. Sinatra and Mr. Bennett, also of Italian descent, were heroes and comrades, and we looked up to them, because they could, probably before fame, identify with similar struggles found in our family. Or so we imagined on hot summer nights as we listened outside to the music coming from the open window. I can close my eyes tonight and still hear my grandmother singing the beautiful ballads while she cooked in the kitchen, and it is a cherished memory I will never forget. It is no surprise to me I would grow up and sing my children to sleep with these tunes from my happy memory.
Years later, when Jack became a big fan, my brother attended a dinner in Manhattan hosted by the Young Italian-American Club and the one and only Tony Bennett was the guest of honor. Towards the end of the evening, he managed to break through the crowds and media and told this superstar all about Jack's disability and his love for the music. Touched by the words, and unbeknowst to me at that time, Mr. Bennett took down our address and two weeks later we received a gift I would always treasure.
This kindly gentleman, a renowned singer and painter, actually sent Jack a letter with an autographed picture along with four cds. He wrote, "To Jack, Here is a picture with me and my dog. Keep Smiling. Love, Tony Bennett." He also enclosed a note-card for me, a print of one of his famous paintings. Inside he wrote, "To Laura, Never give up, I am praying for you. All My Love, Tony Bennett." Jack loved the cds and I have the precious notes tucked away. I look at them now and again and remember how Tony Bennett sent me a letter. I truly wish I could tell my Grandma Josie about it. She'd probably say, "He's a-nice man."
May You Always Recognize The Blessings
Saturday, January 26, 2013
St. Joseph's Church
Every week there was an elderly gentlemen who sat in one of the first pews at mass in our church. We only saw him when we were going up for Holy Communion because we need to sit in the rear of the church, in case Jack has an outburst or repeatedly needs to use the bathroom. We try to be respectful of the congregation and sitting towards the back allows us to slip away easier, if the event presents itself. And more often than not, it does, with some Sundays being better than others. Hopefully we will always be able to attend Mass as a family as it is becoming more difficult.
I first noticed that man last autumn when upon seeing me directing Jack on the communion line, he touched me on the shoulder and said, "God Bless You." And in the weeks that followed he'd touch me lightly on the arm or take my hand and say, "May God Bless You." The kindness in his heart made a deep impression on me because I knew that little old man, a stranger, was praying for Jack and all my family. He sat alone with who knows what sadness in his own soul, and I knew when I saw his tearful eyes that we made a profound impression on him as well. Oftentimes Jack needs help with taking communion and I can actually feel the people sitting in the pews looking at us and praying. It's amazing how someone so silent as Jack can affect so many people.
The last time I saw our friend in the pew was before Christmas. We were on the way back from communion again and he grabbed my hand this time and put five dollars in it. He said, looking at Jack, "buy him ice cream." Shocked, I kissed him on the check and hugged him and managed to quickly say, "thank you, God bless YOU." And I ushered Jack back to our row in the back, sat down, and cried. Later it dawned on me he may have given money that was part of his food budget, maybe all he had for that day. What greater gift than to give all you have to another human being? Sometimes God sends the most wonderful angels to remind you of His Love.
May You Always Recognize The Blessings...
I first noticed that man last autumn when upon seeing me directing Jack on the communion line, he touched me on the shoulder and said, "God Bless You." And in the weeks that followed he'd touch me lightly on the arm or take my hand and say, "May God Bless You." The kindness in his heart made a deep impression on me because I knew that little old man, a stranger, was praying for Jack and all my family. He sat alone with who knows what sadness in his own soul, and I knew when I saw his tearful eyes that we made a profound impression on him as well. Oftentimes Jack needs help with taking communion and I can actually feel the people sitting in the pews looking at us and praying. It's amazing how someone so silent as Jack can affect so many people.
The last time I saw our friend in the pew was before Christmas. We were on the way back from communion again and he grabbed my hand this time and put five dollars in it. He said, looking at Jack, "buy him ice cream." Shocked, I kissed him on the check and hugged him and managed to quickly say, "thank you, God bless YOU." And I ushered Jack back to our row in the back, sat down, and cried. Later it dawned on me he may have given money that was part of his food budget, maybe all he had for that day. What greater gift than to give all you have to another human being? Sometimes God sends the most wonderful angels to remind you of His Love.
May You Always Recognize The Blessings...
Friday, January 25, 2013
Tale Of A Weary Warrior
Today a meeting was held in our kitchen with the professionals who determine if Jack's respite services will remain in tact as is. It's a bi-yearly review of his behaviors, regressions, needs and whatnot, and I dread it every time. The hours are integral to Jack's progress and my sanity, and as a desperate parent of a very disabled child I heavily rely on them, and thank God for them. I am happy to report things will stay the same, at least for now.
When Jack was a little bit younger, and interestingly less complicated, we were actually granted more hours. Two years ago our provider dropped another bomb that we would be decreased by eight precious hours per week due to increased demand and lack of funding, or so they said. It doesn't help our situation that I've obviously got our stuff together, both in the physical and on paper. Sometimes I think we look too organized and too together to qualify for funding, which is frustrating. Years back I requested an informal hearing and the decision to slash our services was reversed. This last time I was not as lucky and I have learned to appreciate the assistance we still have.
There was a time early on in this autism journey I actually refused respite help. "Go out with your husband," they said. "Leave the house and go to the mall for a few hours," they offered. But I politely refused, thinking I could do it all. Not to mention the tremendous guilt I felt at the thought of spending even less time with my son, who was already in therapy and away from me 30 hours per week.
Years have gone by, and I am older and the mother of three. Somewhere in the last 12 years I have become more fragile and less resilient than I had been back when I was fresh and gung-ho to make everything right. Oh, I was going to do it all! And come away from it looking fabulous to boot. People would say to me, "You look great!" and I felt wonderful, energetic, and ready with all the ammo to conquer this autism beast. I put up a great front on the outside that I had everything under control, when in reality, my heart was shattered in more places I ever knew existed. And so I smiled big for my husband and my parents, and walked with my head held high without ever realizing I had forgotten how to breathe and cry. It was a mistake.
It took a while for me to realize that people who are truly strong aren't afraid to ask for help, look vulnerable or cry to a friend. Giving up the control was like a grand piano weight being lifted off my shoulders, once I realized it was okay to need and to want more. And I am a better mother for it. Even if it means I am not Super Woman. That is okay...that is more than okay with me now...
May You Always Recognize The Blessings...
When Jack was a little bit younger, and interestingly less complicated, we were actually granted more hours. Two years ago our provider dropped another bomb that we would be decreased by eight precious hours per week due to increased demand and lack of funding, or so they said. It doesn't help our situation that I've obviously got our stuff together, both in the physical and on paper. Sometimes I think we look too organized and too together to qualify for funding, which is frustrating. Years back I requested an informal hearing and the decision to slash our services was reversed. This last time I was not as lucky and I have learned to appreciate the assistance we still have.
There was a time early on in this autism journey I actually refused respite help. "Go out with your husband," they said. "Leave the house and go to the mall for a few hours," they offered. But I politely refused, thinking I could do it all. Not to mention the tremendous guilt I felt at the thought of spending even less time with my son, who was already in therapy and away from me 30 hours per week.
Years have gone by, and I am older and the mother of three. Somewhere in the last 12 years I have become more fragile and less resilient than I had been back when I was fresh and gung-ho to make everything right. Oh, I was going to do it all! And come away from it looking fabulous to boot. People would say to me, "You look great!" and I felt wonderful, energetic, and ready with all the ammo to conquer this autism beast. I put up a great front on the outside that I had everything under control, when in reality, my heart was shattered in more places I ever knew existed. And so I smiled big for my husband and my parents, and walked with my head held high without ever realizing I had forgotten how to breathe and cry. It was a mistake.
It took a while for me to realize that people who are truly strong aren't afraid to ask for help, look vulnerable or cry to a friend. Giving up the control was like a grand piano weight being lifted off my shoulders, once I realized it was okay to need and to want more. And I am a better mother for it. Even if it means I am not Super Woman. That is okay...that is more than okay with me now...
May You Always Recognize The Blessings...
Thursday, January 24, 2013
A Boy Stole My Heart...He Calls Me "Mom"
It's 6:10pm and Jack should be home soon...he's been out in the community, with a mentor, and I have been missing him. Phase Three of the day is about to begin, with the kids needing dinner and baths and homework have to be completed. I have to catch up on laundry too, and the beds need to be stripped and reset for the night. I was out all day, working on stuff at school, where my two youngest children attend, and I am behind on just about everything. Most days I run around between two different school districts and schedules, one being a half hour away from the other existing on two opposite sides of this county. I balance playdates and after school classes, therapies and meetings, school activities and functions, phone calls and errands. Some days I squeeze in lunch or a workout. It's nuts, but I am very grateful that all three of my children are getting exactly what they need.
I think God gives moms (in general) a special punch of powerful energy when the day nears its end, and you have to keep going like the Energizer Bunny. This is true whether you are a working mom, a stay at home mom, a special needs mom, or a little bit of everything, like myself. People ask me often, "How do you manage all that you do?" And I answer, "Because I'm a mom." Not a saint, not a super-being, but a blessed person my boys love and I love back with all my heart. This is the juice, the life-source we moms have flowing through us for our children's sake-it's what keeps our blood pumping and provides the courage we need to continue onward. The unconditional love we have for them is something we can never fully explain in words, and so, we just do what is the most natural thing for us. We LOVE. Look out, heaven forbid, if someone or something threatens our precious offspring-you are going to awaken a sleeping dragon. Don't say I didn't warn you-I call this Mama Bear Gone Mad. And you probably asked for it.
I am the mother of three very different children. One is a mystery, one is thoughtful and compassionate, and the other a bundle of energy, and I love them all. Like any other mom, I would do anything for them. When those folks ask me how I do what I do, I know they are referring to Jack's condition and the sacrifices that are neccessary to make the day successful for him. Countless years have been devoted to doctors, therapists, specialists, teachers, meetings and reviews, tears of joy and sorrow there are no words left to describe.
How do I DO it? He's my child, my kid, and my heart. People who care for me try to be kind by saying, "God gave him to you because he thinks you can handle it." Perhaps this is part of the equation, but there's got to be something more. I do think that God, in His great mercy, gives Moms of special needs children some of that extra juice to keep the body moving and the mind functioning. It's not about additional love or knowledge, but a strength that grows from somewhere you didn't know existed. A place where God says, "I know your difficulty, I've got your back so you can do what you need to do. Don't give up." Many times I am certain I heard this when I felt at my weakest moments. My house isn't perfect and neither am I, but the spark is better than five cups of coffee in the morning. This is how a little lady can turn into a bear.
May You Always Recognize The Blessings.
I think God gives moms (in general) a special punch of powerful energy when the day nears its end, and you have to keep going like the Energizer Bunny. This is true whether you are a working mom, a stay at home mom, a special needs mom, or a little bit of everything, like myself. People ask me often, "How do you manage all that you do?" And I answer, "Because I'm a mom." Not a saint, not a super-being, but a blessed person my boys love and I love back with all my heart. This is the juice, the life-source we moms have flowing through us for our children's sake-it's what keeps our blood pumping and provides the courage we need to continue onward. The unconditional love we have for them is something we can never fully explain in words, and so, we just do what is the most natural thing for us. We LOVE. Look out, heaven forbid, if someone or something threatens our precious offspring-you are going to awaken a sleeping dragon. Don't say I didn't warn you-I call this Mama Bear Gone Mad. And you probably asked for it.
I am the mother of three very different children. One is a mystery, one is thoughtful and compassionate, and the other a bundle of energy, and I love them all. Like any other mom, I would do anything for them. When those folks ask me how I do what I do, I know they are referring to Jack's condition and the sacrifices that are neccessary to make the day successful for him. Countless years have been devoted to doctors, therapists, specialists, teachers, meetings and reviews, tears of joy and sorrow there are no words left to describe.
How do I DO it? He's my child, my kid, and my heart. People who care for me try to be kind by saying, "God gave him to you because he thinks you can handle it." Perhaps this is part of the equation, but there's got to be something more. I do think that God, in His great mercy, gives Moms of special needs children some of that extra juice to keep the body moving and the mind functioning. It's not about additional love or knowledge, but a strength that grows from somewhere you didn't know existed. A place where God says, "I know your difficulty, I've got your back so you can do what you need to do. Don't give up." Many times I am certain I heard this when I felt at my weakest moments. My house isn't perfect and neither am I, but the spark is better than five cups of coffee in the morning. This is how a little lady can turn into a bear.
May You Always Recognize The Blessings.
Poem
Friday, June 1, 2001
What If There's No Heaven?
Challenging all
I've been taught to believe today
Waiting and hoping
For a happier future
What if there's no heaven?
Gruesome thought
Take flight in the night
Prayerful whispers
To One I call God
Almighty Ruler
Who doesn't always answer the way I'd like
What if there's no heaven?
Hell on earth
This chaos rules beyond my control
Some sort of destiny
Continues onward
Without any obvious rhyme or reason
Or light at the end of the tunnel
All possibly for nothing
What if there's no heaven?
(c) Laura Licata Sullivan
Seashores and Seasons, Poetic Verse
2003
What If There's No Heaven?
Challenging all
I've been taught to believe today
Waiting and hoping
For a happier future
What if there's no heaven?
Gruesome thought
Take flight in the night
Prayerful whispers
To One I call God
Almighty Ruler
Who doesn't always answer the way I'd like
What if there's no heaven?
Hell on earth
This chaos rules beyond my control
Some sort of destiny
Continues onward
Without any obvious rhyme or reason
Or light at the end of the tunnel
All possibly for nothing
What if there's no heaven?
(c) Laura Licata Sullivan
Seashores and Seasons, Poetic Verse
2003
Wednesday, January 23, 2013
I've still got it...but what is "IT?"
Does it bother anyone else that their offspring can learn how to use an Ipad in two seconds, or am I the only dinosaur on the planet?
I am a writer, and I write. I have always written for as long as I can remember. And when I started this blogging journey, I thought I would write write write from my heart, easy-peasy. Then my husband came along and looked at the simple layout and said, "ICK..., you have to do something to bring traffic to your site, and this looks awful."
He showed me some HTML codes and I felt dizzy and almost threw in the towel. "I thought I was supposed to write about autism, for Pete's Sake?" He said, "You are computer literate, you have to play around a little bit. It's just common sense." Time, my husband, TIME, is a rare commodity in this place.
So, here's the thing. I have not used HTML in a long time (do they still even use this?) and have always wanted to learn Word Press or something else really cool and up to date, but I have not been able to work or gain experience. I have often wondered what I would say to a potential employer one day when they notice the big gap/lack of skills on my resume and ask, "So, what did you DO for umpteen years?" And I reply honestly, "I stayed home to raise my children, one is severely autistic." Do you know what that translates into? "Next candidate, this one is completely clueless!" As the world spins currently, I am completely unskilled and unemployable in my field.
Or am I?
I was so proud of myself yesterday. After hours of working tirelessly on my blog, I beamed to myself with a great satisfaction and sense of accomplishment. To my delight, I was able to teach myself some of the ins and outs of page design and even came to the conclusion that most of what I was learning was an extension of what I already know, what I used to do. After much work and a sore back, I happily went to leave the computer and the kitchen table. And then, the universe decided to mock me. In an instant, the entire page I so carefully edited and made my own, was a scrambled mess of I don't know what. Everything was everywhere and nothing lined up anymore. I freaked out. Jack started screaming because he wanted a bath and couldn't wait while I tried to figure out what went wrong. This went on for half an hour.
I phoned my husband crying and angry, because I felt like such a flop. In all honestly, I know I was being dramatic and was overtired. I was so disappointed that all my hard work virtually disappeared and I did not know how to get it back. He came home and in no-time repositioned everything that went askew but it took a long time for me to fall asleep, just the same. I was that upset. You would think that after all this time I would have learned not to sweat the small stuff, but I was pretty angry. It is difficult to remain patient when so many big things have a life of their own, seem out of control, and sometimes I can just SPIT when the little things pile up and ad to my stress level.
There is no moral to this story. I was peeved, but am relieved things are back to normal...for now....I am grateful my husband loves me to put up with my temper tantrums...and the fact he knows general STUFF is always helpful.
May You Always Recognize The Blessings...
I am a writer, and I write. I have always written for as long as I can remember. And when I started this blogging journey, I thought I would write write write from my heart, easy-peasy. Then my husband came along and looked at the simple layout and said, "ICK..., you have to do something to bring traffic to your site, and this looks awful."
He showed me some HTML codes and I felt dizzy and almost threw in the towel. "I thought I was supposed to write about autism, for Pete's Sake?" He said, "You are computer literate, you have to play around a little bit. It's just common sense." Time, my husband, TIME, is a rare commodity in this place.
So, here's the thing. I have not used HTML in a long time (do they still even use this?) and have always wanted to learn Word Press or something else really cool and up to date, but I have not been able to work or gain experience. I have often wondered what I would say to a potential employer one day when they notice the big gap/lack of skills on my resume and ask, "So, what did you DO for umpteen years?" And I reply honestly, "I stayed home to raise my children, one is severely autistic." Do you know what that translates into? "Next candidate, this one is completely clueless!" As the world spins currently, I am completely unskilled and unemployable in my field.
Or am I?
I was so proud of myself yesterday. After hours of working tirelessly on my blog, I beamed to myself with a great satisfaction and sense of accomplishment. To my delight, I was able to teach myself some of the ins and outs of page design and even came to the conclusion that most of what I was learning was an extension of what I already know, what I used to do. After much work and a sore back, I happily went to leave the computer and the kitchen table. And then, the universe decided to mock me. In an instant, the entire page I so carefully edited and made my own, was a scrambled mess of I don't know what. Everything was everywhere and nothing lined up anymore. I freaked out. Jack started screaming because he wanted a bath and couldn't wait while I tried to figure out what went wrong. This went on for half an hour.
I phoned my husband crying and angry, because I felt like such a flop. In all honestly, I know I was being dramatic and was overtired. I was so disappointed that all my hard work virtually disappeared and I did not know how to get it back. He came home and in no-time repositioned everything that went askew but it took a long time for me to fall asleep, just the same. I was that upset. You would think that after all this time I would have learned not to sweat the small stuff, but I was pretty angry. It is difficult to remain patient when so many big things have a life of their own, seem out of control, and sometimes I can just SPIT when the little things pile up and ad to my stress level.
There is no moral to this story. I was peeved, but am relieved things are back to normal...for now....I am grateful my husband loves me to put up with my temper tantrums...and the fact he knows general STUFF is always helpful.
May You Always Recognize The Blessings...
Monday, January 21, 2013
Somewhere, There's Still A Woman
So, I had help with Jack today and she came with us on a few errands. It was nice to get out of the house for once and on the way home I realized my middle son could use a haircut. While we were there I thought perhaps I should get one as well. I honestly don't remember when's the last time I got my hair trimmed, but if split ends could speak they'd confess it's been a while. I am under five feet and have huge hair like that princess in the Disney cartoon, "Brave," minus the flaming red gorgeousness.
It's not always easy having this big mop of curls, especially when the last thing you think about is caring for how you LOOK. Not to mention the constant reminders I get from these stylists who often comment on my shaggy appearance, "Don't worry, we can fix that." Like I've got the time to moisturize my strands. There are some days I cannot remember if I brushed my teeth or not...I've honestly left the house not knowing at times...
Anyway, she gave me a great look, curls and all, for a fraction of what I normally pay and I am so happy to have found her. She actually said, "you are beautiful," and I felt prettier than I had in a long time. From time to time I still wonder how haggard I must look to well-manicured moms and her comments made me feel wonderful.
Funny, she had to blow my hair straight to cut it evenly and I looked like a completely different lady when she was through, almost a modern woman. Jack kept coming over to touch it my hair, so silky and smooth and LONG for a few minutes, and he said, "You look like a mermaid, so pretty, Momma Laura ." And I really felt like a pretty lady afterall, because if anyone is brutually honest, it's Jack, and he must have meant what he said to muster up all those words. The best part is he probably doesn't care one bit what I look like on a daily basis, for more than anyone I know, he really understands what's inside is what really counts. But the look on his face told me he was glad I had a little bit of fun, and it was worth it just for that.
Funny, she had to blow my hair straight to cut it evenly and I looked like a completely different lady when she was through, almost a modern woman. Jack kept coming over to touch it my hair, so silky and smooth and LONG for a few minutes, and he said, "You look like a mermaid, so pretty, Momma Laura ." And I really felt like a pretty lady afterall, because if anyone is brutually honest, it's Jack, and he must have meant what he said to muster up all those words. The best part is he probably doesn't care one bit what I look like on a daily basis, for more than anyone I know, he really understands what's inside is what really counts. But the look on his face told me he was glad I had a little bit of fun, and it was worth it just for that.
May you always recognize the blessings....
What Happens When There's No School
Today is Monday, Martin Luther King, Jr. Day, and my children are home from school. Normally this is a nightmare situation for us because Jack thrives on his routine. Unlike other 14 year old boys who would rather sleep in on the weekends, Jack cries for school at 6:30am on Saturdays. I have tried repeatedly to take the three boys out to lunch or the mall to pass the time, but the task is enormous. Nowadays, for safety reasons, we try to have "movie-themed days" here at home. For the sake of all three children, I have organized craft time, bake time, and play time, and find myself exhausted at the end of the day trying to keep Jack interested in even some of it. I hate to say it, but there have been times during extended breaks I have snapped at my unsuspecting children, out of sheer desperation.
I do not feel comfortable sending my mostly non-conversant child to a respite program, and I wish I could say differently, but I would not be able to live with this decision, if I sent him. I do know that some of our local friends have had success with respite programs, and need them perhaps more than I do due to work schedules, and I do not blame them one bit for enrolling their children. What works for one may not work for another, and Jack is not functioning enough to interact with some of these higher-functioning students. Working one-on-one with him is key.
Let me just state up front I miss my three children terribly when they are in school. They are growing up too quickly and I oftentimes selfishly wish I could just snuggle with them for eternity. But these days off are LONG and hard, and trying to fill Jack's 12+ hour time slots with positive activities has become too difficult. And what about the two other boys that need love and attention? It dawned on me that I cannot continue on this way and give each precious one the piece of me they deserve. Jack has a one-to-one aide in school because he needs attention and supervision 24/7. Life, however, with multiple children, is not like this. It is not realistic. I am exhausted from trying to do the impossible.
And so I threw up my hands a few months ago and admitted that even Super Woman gets to have a cup of tea and wardrobe change every now and then. In an attempt to make these days more enjoyable for all of us, I hired a few special ed teachers to help me on days we have no school. Money is tight, but this is a gift to myself and I balance my guilt by reminding myself I haven't gotten my hair cut or styled in 5 months. I can live without highlights or spa visits, manicures and whatnot, but going on in this way was simply not going to work anymore. I'd rather look the way I do than not have the help I so desperately need.
And today I am more than grateful for my decision. God intervened AGAIN and found for us a great young special educator...and she is sweet and gorgeous...Jack actually asked to see her over the the weekend and I had to explain to him that she wasn't coming until today. They are in the dining room doing school work and I am making lunch for all three boys. Later another educator will help me take all three boys out on some errands. And I am grateful...grateful for the insight that I cannot do it ALL...and more grateful for the wisdom to understand that is OKAY.
May You Always Recognize The Blessings...
I do not feel comfortable sending my mostly non-conversant child to a respite program, and I wish I could say differently, but I would not be able to live with this decision, if I sent him. I do know that some of our local friends have had success with respite programs, and need them perhaps more than I do due to work schedules, and I do not blame them one bit for enrolling their children. What works for one may not work for another, and Jack is not functioning enough to interact with some of these higher-functioning students. Working one-on-one with him is key.
Let me just state up front I miss my three children terribly when they are in school. They are growing up too quickly and I oftentimes selfishly wish I could just snuggle with them for eternity. But these days off are LONG and hard, and trying to fill Jack's 12+ hour time slots with positive activities has become too difficult. And what about the two other boys that need love and attention? It dawned on me that I cannot continue on this way and give each precious one the piece of me they deserve. Jack has a one-to-one aide in school because he needs attention and supervision 24/7. Life, however, with multiple children, is not like this. It is not realistic. I am exhausted from trying to do the impossible.
And so I threw up my hands a few months ago and admitted that even Super Woman gets to have a cup of tea and wardrobe change every now and then. In an attempt to make these days more enjoyable for all of us, I hired a few special ed teachers to help me on days we have no school. Money is tight, but this is a gift to myself and I balance my guilt by reminding myself I haven't gotten my hair cut or styled in 5 months. I can live without highlights or spa visits, manicures and whatnot, but going on in this way was simply not going to work anymore. I'd rather look the way I do than not have the help I so desperately need.
And today I am more than grateful for my decision. God intervened AGAIN and found for us a great young special educator...and she is sweet and gorgeous...Jack actually asked to see her over the the weekend and I had to explain to him that she wasn't coming until today. They are in the dining room doing school work and I am making lunch for all three boys. Later another educator will help me take all three boys out on some errands. And I am grateful...grateful for the insight that I cannot do it ALL...and more grateful for the wisdom to understand that is OKAY.
May You Always Recognize The Blessings...
Sunday, January 20, 2013
It's 2:45am, Has Anyone Fed The Cat?
I awoke to a screaming feline and told her to go away for a half an hour before I made my way downstairs in the dark.
Has anyone fed the cat? The dog? The fish? What about the turtle and the chicken? Yes, I said CHICKEN. This girl who grew up in New York City actually has a chicken now, of all things. You remember that sweet movie, "We Bought A Zoo?" Well, my father always laments, "We don't have to go there, we can just visit your house."
So how did this happen? My middle son is an animal lover and science enthusiast. Heck, he's into everything and quite bright. He's got things growing and hatching everywhere. In my attempts to nurture each boy to the fullest, I have caved into the pet ownership thing with him. Oh, he adores them, talks to them and is probably more responsible than a lot of eight year olds, but like any other kid who's having fun, he's got to be reminded to take care of his responsibilities. Guess who has these critters following her around the house when he's in school?
There are times I feel a little bit sorry for him too, because he is so conversant and even extra-ordinary in some ways. Being born after my oldest was diagnosed with Autism is not always the easiest position to be in, and now he's the middle child to boot. There's a lot that's silently expected of him, because he is the conversant one, and the easy-going on. It's easy to forget he's just eight years old, especially since he's really become the big brother in this situation and he has matured faster than I can keep up with. Having a brother who is autistic has created in him a very compassionate and patient person and I can see why these tiny animals (and people) flock to him in return.
And so, I make concessions I never thought I would. And now this Brooklyn-born girl has a pet in the yard named "Chicken Dinner." And I am grateful.
May You Always See The Blessings...
Has anyone fed the cat? The dog? The fish? What about the turtle and the chicken? Yes, I said CHICKEN. This girl who grew up in New York City actually has a chicken now, of all things. You remember that sweet movie, "We Bought A Zoo?" Well, my father always laments, "We don't have to go there, we can just visit your house."
So how did this happen? My middle son is an animal lover and science enthusiast. Heck, he's into everything and quite bright. He's got things growing and hatching everywhere. In my attempts to nurture each boy to the fullest, I have caved into the pet ownership thing with him. Oh, he adores them, talks to them and is probably more responsible than a lot of eight year olds, but like any other kid who's having fun, he's got to be reminded to take care of his responsibilities. Guess who has these critters following her around the house when he's in school?
There are times I feel a little bit sorry for him too, because he is so conversant and even extra-ordinary in some ways. Being born after my oldest was diagnosed with Autism is not always the easiest position to be in, and now he's the middle child to boot. There's a lot that's silently expected of him, because he is the conversant one, and the easy-going on. It's easy to forget he's just eight years old, especially since he's really become the big brother in this situation and he has matured faster than I can keep up with. Having a brother who is autistic has created in him a very compassionate and patient person and I can see why these tiny animals (and people) flock to him in return.
And so, I make concessions I never thought I would. And now this Brooklyn-born girl has a pet in the yard named "Chicken Dinner." And I am grateful.
May You Always See The Blessings...
Saturday, January 19, 2013
Lost it a long time ago...
It is a well-known fact the first thing that happens to ANY mom who juggles too much is that the brain starts to SLOW DOWN. Hopefully for most people, this happens gradually over time with age and stress and does not represent the complete loss of memory and function aItogether. I have asked friends on Facebook to follow me here on this blogging adventure (some great parents I have met also have children with profound autism and I will hope and pray they will contribute and comment) but none of us can figure out how to go about this. We are mostly sleep-deprived and still listen to music from 1985...have not caught up with life in the current world because we have NO TIME to breathe between life and appointments. On a happy note for our mentors and therapists, I did recently learn how to text message. And, at the prompting of my husband, I set up this blog all by myself...maybe there is hope for me yet...
May You Always Recognize The Blessings....
May You Always Recognize The Blessings....
There are many unknown lessons and blessings that come with being a Mom to a child with diverse needs, whether they are autistic or have some other disability (or disabilities). Some of these lessons have been intense, and I'm sure there are many I am still learning. Your relationships with different people can either grow or die in any situation--we've been blessed to meet some of the greatest angels as well as fight some hefty battles with people we thought were friends. I look so forward to writing this blog and sharing our world a little bit with those who choose to enter. Please feel free to comment and share.
May you always recognize the blessings...
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