Autism is not “Convenient”!

Autism is NOT Convenient

I recently had my disability hearing before a nasty judge. He went over my work history, which is based in psychology and working with children with disabilities. Then he asked if any of my family members struggled with a disability, so of course, I discussed my son’s diagnosis. His commentary was inappropriate, rude and a bit heartbreaking. He simply stated “well that’s convenient”.

I don’t know if he was referring to the fact that I have experience and training in working with kids with disabilities, or that I “made” the doctor’s diagnose my son with these disabilities because I am some kind of a sick person with Munchausen’s, but either way, I was insulted and hurt and now oh so very angry!!!

Autism isn’t convenient in any sense of the word. It is hard, it is scary, and it is life altering. Chasing my son down every time we go out is not convenient. Having to give constant reminders and re-teach basic skills over and over again is not convenient. Dealing with anxiety, depression, meltdowns and oppositional behavior is not convenient. There is absolutely nothing to this diagnosis that I find convenient. Mostly it is hard and sad and frustrating.

Ben has been struggling this week or so because I have been sick and in the ER three times; and our guinea pigs died. His anxiety levels reached an all time high, and it is everything I can do to help him manage that when my own anxiety levels are skyrocketing. To top it all off, both of my grandfathers are probably dying and he will soon have to deal with that. We are trying to prepare him for the possibility as he does not deal with death well.

There have been too many close calls with mom for him to handle death without panicking. We have found that a cool, damp washcloth applied to the back of his neck literally helps him cool down and regulates that emotion, and have been advised to use ice or a cold shower if the situation becomes extreme.

As a form of control, Ben has started to monitor and limit what he will eat. He doesn’t want to get fat. You can count every rib, vertebrae and feel all his bones, but he is worried about being fat. My family is not fat, and nobody has a tendency towards obesity, but he worries. He worries, and I talk to him and then cry when he is asleep.

Everything I know about psychology, autism and other disorders did nothing to prepare me for the reality of what I am going through with my son. I owe an apology to every mother that I talked to like I knew anything, because I didn’t. I know the theories. I know the potential treatments, side effects, and reasoning, but when it comes to actually dealing with the daily issues, I am lost.

So we get to take another trip to the psychiatrist to help find a new way to deal with anxiety and food issues. The school district doesn’t think we have a problem because he does well in reading and math, but there is so much more to life than being able to read a book or add and subtract. I am scared and lost, and all my training did not prepare me for this.

So no, annoyingly patronizing judge. My son’s diagnosis was not convenient. If I had the time or money I would fight to have your position stripped and make you take sensitivity lessons. That wasn’t the only low point of my hearing, but it was definitely the worst. I would not wish this on anyone. I am not the only one who sees it and has to deal with it, my husband sees it too. He worries too.

Individual testing without my presence verified the diagnosis. Yes, I had to report the symptoms and take the initiative to get him checked out, but I did not “give” my son autism, ADHD or any of his other disorders, and yes they were triggered earlier in severity because of my medical issues. If you get to decide if I am disabled, the least you can do is know the facts. No amount of insisting on my part would have two psychiatrists, a neuropsychiatrist and two counselors diagnosing my son with these disorders. I just report what I see. The fact that I can do it in a concise manner and avoid potential misdiagnosis, and other pitfalls is a blessing, not a convenience.

I would love advice, help, suggestions, anything! How do I lower my son’s anxiety? How do I prepare him for the deaths of my very sick 90 year-old grandfathers? And how do I deal with this eating issue without making it a battle of wills and thus making it worse?

Also, does it get better? Will he be able to grow up and find happiness? Does all the effort and diets and testing and treatments actually produce results? I am so discouraged and that judge did not help. Maybe I should start a petition on Cause.org to have him apologize, or removed. I don’t know what is best, but I do know this, there is nothing “convenient” about dealing with disabilities in yourself or your child.

About Natalie

I am a mom who stays at home while her son and husband play at school. I love to blog, enter giveaways, swim, hike, and scrapbook. I have a rare brain disorder called hypopituitarism. It keeps me slowed down, but can't stop me. My son is autistic, dyslexic and has ADHD. Dad is ADHD and dyslexic too. In the end we are always just muddling through, but I love our life, and my family and I wouldn’t change a thing.

Comments

  1. Kathleen McConkie says:

    Thank you so so much for your honesty! I can’t tell you the validation I felt reading your story. I have a 13 yr old son with high functioning Autism and dyslexia. My 9 yr old twin boys are Autistic, have speech impairments, and ADD. My 8 yr old son has ADHD and OCD so bad he has been labeled the most defiant trouble maker of all time. Because he is so book smart he must be lacking discipline or so I’ve been told. My 3 yr old daughter and 2 yr old son are diplaying many symptoms. My own medical challenges and long hospital stays have made matters worse! Every day is a challenge like no other when people look at you wondering why you are tying your 13 yr olds shoes cause he forgot again. Or driving to the school because one of them is frozen in the middle of P.E. and no one can continue past your totem pole child standing in the middle of the game. I guess a judge being to judgemental is the case.