Mistakes of A Special Needs Mother: Tips From a Parent of an Autistic Child

Mistakes of an Autistic Parent
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Piecing the Puzzle Back Together: Tips from the Mother of an Autistic Child
By: Brooke Price

One of the largest obstacles I have struggled to overcome as the mother of a child with autism is learning to be ok with the mistakes I have made along the way. A great deal of my mistakes surround the sleep deprivation that I feel on a daily basis. My son is part of the nearly ½ of all school aged autistic children that have sleep trouble. Zain has never slept correctly in his whole life.

Early Childhood Dreams

When he was smaller I use to have this idealistic notion in my head that I was going to find the right medication or therapy and all his sleep issues were going to be fixed. In my quest to find my son’s ‘magic bullet’ I tried everything that could be tried. Weighted blankets and vests, medications such as melatonin, prescription medications, we even did several sleep studies. The findings of our son’s sleep studies were mind boggling. He does not have a normal REM cycle. He doesn’t need as much sleep as you or I do. This woke me up from the la-la land I was living in. I realized this was a real problem.

Being so confident that you are going to be able to solve a problem can lead to an unbearably traumatic let down. Being realistic is the best approach to all things in life. There are points with my son that I have pushed, such as his ability to speak. I never gave up despite being told he would never be able to communicate verbally. I knew the doctors were wrong. When it comes to matters such as sleep disorders and sleep troubles you can’t afford to be so confident.

Mistakes I Made A Long the Way

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When my son was first diagnosed autism was still taboo. Nobody knew a thing about it publicly and the prevalence numbers were still about 1 in 160. I researched, but not enough. That was probably my first real mistake. You have to research everything. I just believed what the doctors were telling me. If they said to give him 5 different medications at once I did it without asking any questions.

I’d say that was probably my second mistake. You cannot trust blindly, you have to research and question all medications that you allow your child to be put on. I have since wised up, as a young mother I had not matured enough to see that doctors are human and can be wrong too.

When Zain was smaller and during any given night would have me up for 7 hours straight, only sleeping one hour the whole night, I would get frustrated. Many nights I would even find myself holding him and crying. This frustration led to a sense of resentment towards my husband because he got to sleep, even if that was only because he had to work insane hours every day. You know a person is desperate if they are jealous of someone for getting to sleep so they can go work their bottom off.

My frustration was definitely my nemesis. My third mistake would have to be not maintaining an emotional constant. I allowed my emotions to get the best of me. This flaw in me contributed to further issues and no doubt made it even tougher for my son to sleep some nights. As time has went on I have ‘gotten use to it’. Being without sleep doesn’t bother me so badly. I nap when I can and always remember that my son wishes he could rest just as much as I wish he would. Yoga has also helped a great deal with soreness from sleep deprivation. It also helps fight the potential for weight gain that sleep deprived parents of children with autism sometimes experience.

I do wish that in the earlier years of Zain’s childhood I had stopped and thought about some of the treatments that are used in autism. I wish I had been afforded the opportunity to have a simplified list to follow. One that could help my autistic child sleep better. Now days there are many of these lists available online. One I like consists of 5 simple tips. Finding a list such as this may help in ways you never thought it would. Nothing is going to fix an autistic child’s sleep disturbances entirely, in most cases, but knowing a few tips that may help is definitely worth the try.

Learning from My Mistakes

While it isn’t easy for any parent to admit publicly that they have made mistakes more of us need too. It can be argued that if we are not all open about the miss-steps, bad experiences, and all out mistakes we have made and encountered while walking the path we are on then how will we help prevent another parent from making the same mistake(s)? We parents are each other’s best resource and support network throughout this journey. We have to learn from each other. Sleep deprivation affects half of us and our children, what better place to start the conversations than here?

Sources: Children's Hospital LA: Sleep Issues and Autism Spectrum Disorders (ASD).

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