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
Wednesday, January 30, 2013
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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