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...

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.

3) Provide refreshments for all!!!

2) Bring an 8 x 10 framed picture of your child and set it in front of you. This will help the committee see the child as  real person.

***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...

 

 

 

 

Challenges Of Toilet Training A Child With Autism

So...one of the things I am often asked as a mom with an older child with autism is...will my son/daughter EVER be completely toilet trained? These expressed frustrations are well-founded and exhausted autism parents are not helped by the annoying phase resounding from doctors all over the world: "Don't worry...your child will be trained by the time kindergarten graduation comes along." I hate to tell you what you probably already know by now, but some of us have figured out this rite of passage of toddler hood to big kid does not apply to children on the autism spectrum. No, time has proven that many of our children are still in diapers at least part of the time through grade school. Some are in diapers for life.

With training attempts there are countless mishaps and accidents...and hidden poop under the couch. It becomes even more difficult when our older children will not use certain public facilities, such as those in school and in the mall. We have tried rewards and habit training, and have used timers and star charts and yikes, even bribery. For years, I sang songs, made silly faces, and told a million jokes with no avail. Some of my friends have even moved their television sets into the bathroom! Yes, anything to get their kid to sit on the toilet and make something happen. Two things I prayed for in the early years was for Jack to sleep at night and learn to poop the right way. What was most upsetting to me personally was the utter look of confusion and loathing on his face whenever I ushered him into the bathroom. One day I realized that until he was able to comprehend what his body was trying to tell him all the habit training and back massages would be basically useless. And so I waited patiently and encouraged and praised...and cleaned up a ton of messes.

By the time Jack was six he was finally able to go through the night without the use of those dreaded pull ups. I swear, those nasty things really made our situation worse, even though we were able to go out in public. I remember using the habit training and running to the bathroom every hour on the hour if we were out of the house and hoping more than anything I would find nothing in the pull up every time. It is a daunting and exhausting experience for a parent with a larger child, especially one big enough to give you a long hard kick in a tight public restroom. Even better when you have to wrestle the child into a stall and complete strangers think you are nuts.

It seems to me a child with autism has some really anxiety-related issues when it comes to using the bathroom and speaking reassuredly and having a ton of patience is helpful. But something even more important is addressing your child's digestive issues. Many times our special children suffer greatly from stomach distress that is too often food allergies or sensitives and/or candida overgrowth. A friend of mine made a great suggestion that eventually helped Jack master the art of pooping in the toilet!!! Digestive enzymes to the rescue!

What is a digestive enzyme?
Digestive enzymes are used by the body and the digestive system to break down the foods that you eat into the nutrients that you body needs to function in a healthy manner. A healthy body will produce 22 different digestive enzymes that it uses to break down the food that you eat.

When you eat, the digestive enzymes in your body are excreted from the salivary glands in your mouth, as well as the digestive enzymes that are found in your stomach. The small intestine in your body helps to move the digestive process along by allowing the each of the digestive enzymes to react to a certain type of food. Different enzymes work on different foods, such as the amylase's digestive enzymes that help your body to digest carbohydrates. This is if everything is working as it should.

But what about the child who is toxic or damaged from vaccinations? What gut repair needs to be done for the child who suffers from malabsorption of nutrients? Run out and get these digestive enzymes for anyone in your family with any type of digestive issues. Jack was toilet trained in a week at the age of nine, because of them.

Please see this very informative page for more information:

http://www.betternutrition.com/enzyematichealth/columns/askthenaturopath/697

Today, at the age of 14, Jack still has toileting issues, especially in public situations.  Of course, he is too big to take into the women's room and our outings are very limited. At times he can be obsessive with hand washing and other days he needs to be reminded constantly. At home, he went through a phase where he would flush anything down the toilet, and I mean anything, including the cordless phone. I have cleaned up many a flood and I hate to learn the current condition of our septic system. But the enzymes helped him quite a bit. I think they took his gut pain away and put him in touch with his body. I only wish I knew about this sooner.

It is said your second brain is in your gut and it is my belief that if you balance the gut some of the brain fog in a child with autism will be lifted. Maybe emotions can be balanced, and anxiety alleviated, at least a little bit. And every little bit counts...

May You Always Recognize The Blessings..