Autism Moms
Finding Your Tribe
Shortly after D was diagnosed with Autism he started Occupational Therapy (OT). For as long as I live, I will never forget walking into his first appointment and feeling such relief as I observed the other kids there. As one boy came careening around the wall and then crashed into it, I realized that I had found D’s tribe. There were other kids out there just like him! He wasn’t alone!
Not only did he find his tribe but I found mine in the other parents in the waiting rooms who were all going through similar experiences. This brought me hope and information I was searching for.
Finding your tribe is probably one of the most important things you can do for yourself and your child after receiving a diagnosis that knocks you off your feet. They help you regain your balance, feel accepted and not crazy, (because sometimes you really wonder about your sanity). It helps your child deal with the loneliness that comes with discovering you are different and all your friends don’t have medical procedures they have to do every day, that they have jokes that you don’t understand because to you, speech is very literal, or that while their friends are playing after school, you’re at doctors appointments, therapy or just too exhausted to play.
To my tribe, THANK YOU!
To those of you who aren’t in my tribe yet, I can’t wait to meet you and help you in the way so many others have helped us.
Sleep
I come from a long line of people who have no problems sleeping. There are a few recorded episodes within my family of narcolepsy, and the joke has always been in my family that my Dad’s eyelids were connected to his behind as he would sit down and immediately go to sleep.
Sleep issues for my son were a complete surprise to me. What came as an even bigger surprise was the sleep issues I have developed.
All mothers go through a through a period of at least a few years where their children don’t sleep at night and they are very sleep deprived. Eventually, most children learn to sleep through the night. But my issues started LONG before children.
My sleepless nights started when my husband deployed to Iraq for the first time. There was a bit of a time difference there between us, coupled with the fact that phones were not very accessible, and depending on when he was on duty or not, largely dictated when he could call which was usually about 3 am. But he was in a war zone, and I was just happy to talk to him. But when I hadn’t heard from him in awhile I would either be kept awake worrying or wake up suddenly expecting a call. Let’s just say that didn’t make the greatest sleep for 16 months.
We didn’t have any kids at the time thankfully. Those came a couple years later and my daughter was born during his second deployment to Iraq when again I was waiting for phone calls.
Later when D was about 3 1/2 he started waking between 2-4am for the day. That was pretty much impossible for me to handle. It was what propelled me to start finding out what was going on with him. Here we are, many years later and sleep is still an issue for him.
Suddenly I am having really bad bouts of insomnia that can literally keep me awake all night. I really think at this point it has been trained into my body from the last 14 years or so. I don’t function well at all on no sleep. I pretty much can’t function. So I should be able to chalk up any bad decisions I’ve made recently to chronic lack of sleep right? I mean there has to some good side?
This is a very common occurrence for parents of children with Special Needs and for spouses of Military personnel who are deployed. This is the life I’ve chosen and I live. Here’s hoping I can find the right supplements to knock me out at night.
My PTSD With My Son and School Issues
Anxiety is literally eating me apart.
One day this past week I couldn’t get my son to go to school and I didn’t figure out until later in the day that it was due to a new testing system. He’s never had any problems taking tests. It makes me wonder if they are following his IEP and actually giving him the testing accommodations he has a legal right to, due to his disabilities. Some of these accommodations are things like having a scribe, having the questions read to him, a bit of extra time, etc. This ensures that he can show what he actually knows, and doesn’t get caught instead in the mechanics of the question. But are these accommodations happening?
I signed paperwork to start a Functional Behavioral Assessment early last week. Things have not been going well in his first year of middle school. He’s reading a book or drawing or watching YouTube videos rather than participating in class and that isn’t going to get him an education.
The Vice Principal called at the end of the day on Friday to let us know that the teachers had come up with a new plan. He would still follow the 6th-grade curriculum track but starting Tuesday, he would be going in and staying with the 8th-grade class. They told me he can do all his work on the computer. But who is going to monitor him to make sure he isn’t on YouTube? If he does all his work on the computer, how will they teach him to work in groups for group projects when that is something he is highly deficient in his ability to do at this time?
They tell me he will still be getting the same content as the 6th graders it will just be a quieter environment that hopefully, will make a better work environment and he will be away from the kids that are setting him off. But how is it appropriate to put a 6th grader who is behind in at least half of his subjects with 8th graders? How are the teachers going to deliver his content, while they are teaching 8th-grade level subjects? He is already behind, there is no way he can keep up with 8th graders.
I am afraid that their next move will be to decide to place him in a self-contained classroom if this doesn’t work. But for him, that would definitely not be the least restrictive environment, and it is the law that he is placed in the least restrictive environment. I am worried that should he be placed there, he wouldn’t get an education. They would just babysit him and he would pick up more inappropriate behaviors in this setting from children who are lower functioning than he is.
Our meeting to discuss all this isn’t scheduled for 3 weeks. The torture of waiting to see what is going to be the educational outcome is crushing because these decisions can really make or break a child’s success and this is MY CHILD.
In the meantime, his behaviors have been escalating. Christmas break and the break in his routine was not our friend.
This has made my anxiety crush me, and insomnia a frequent occurrence. The years of dealing with these situations have given me PTSD with regards to school meetings of any kind. It’s taking my max medications and supplements for me to get through the day. Friday and Saturday after a root canal I couldn’t deal with things. But somehow I have to.
I don’t know why it is this way but it needs to change. Parents with children with Special Needs shouldn’t have to fight SO hard get basic educational needs met. Yet we do, and we will continue to.
A Disability or Just Differences?
When is a disability something that’s wrong or is it something that is just different and therefore not a disability?
Many in the Deaf community feel that there is nothing wrong with them and their lack of hearing. They have created a distinct culture and language around it. It came as a surprise to me when I learned a year or two ago that many people who experience Autism feel the same way. They feel their brains may work differently but that there is nothing wrong with them.
People who can hear or whose brains work neurotypically by and large don’t understand their position. Why wouldn’t you want to be hearing? Why wouldn’t you want to be able to read social cues? Yes, they are missing out on something, but who’s to say that you aren’t missing out on something as well?
The more time I spend learning about and experiencing this world of disability through the eyes of a parent, I’m coming to believe that there is less disability here than I originally thought, and just a different type of ability instead.
