Tot has been going to Early Education for a year and a half now and he was given the default diagnosis of YDD (Youth with Developmental Delays) when he started. It’s a really broad definition and is given to children that need assistance in Early Education to help in their development. What I’m writing about today is the next step in the process, the official “diagnosis” given by the state and what is mandatory for him to have before starting Elementary. It is also necessary in order to receive any assistance for him, now and in the future.
In other words, this is the beginning of testing for Autism/Aspergers.
I decided to write about it since I had tried to look up a personal account years ago and had a bit of trouble. Although everyone’s experience is different and also depends on what facility you have your testing done through, the outline is the same. I only wanted to share my experience in order to show other parents that there’s nothing to be afraid of and it is pretty simple.
This is Part I. For those of you looking for information on Early Education, YDD and understanding different developmental skills, check out The Promise of Early Education where we began.
Last month we had the regular sit down to go over the beginning of this year’s action plan, or Independent Education Plan (IEP). Though this time was different because it is his last year before Kindergarten and so the child psychologist (and her intern) was with all the teachers and I. I was already prepped about this year and how tot would have his “big test” and the extensive IEP meetings that would follow, so it was a comfortable meeting. We wound up talking mostly about how sweet Judah is and how far he has come since the first year, which was and is incredible! The psychologist was really nice and tot took to her and her intern with a big smiling face. I was really blessed to have his testing done at his school where he has always been comfortable and happy and I knew that he would come out of his shell there.
I was informed I would receive a bunch of paperwork to fill out and give my confirmation that they could test him. The papers came and they were in their simplicity.. complicated. They didn’t leave a lot of room for explaining things. It reminded me a lot of state standardized tests they put kids through at schools with…
In this case you had..
There were no fill in the blank, just shade in the circle. I guess there aren’t any “wrong” answers, but any test makes me feel like there is only two options: Pass or Fail.
In the case of an Autism diagnosis, there wasn’t any option to Pass. If your child “passes” the test and is diagnosed with Autism, that sucks, but on the other hand you get the services they need in school. If your child “passes” without Autism, that sucks too, because they may be just a bit behind their peers but they aren’t going to get any help. So… I just filled in the blank knowing that whichever direction it went somewhere something was failing.
Then I remembered my son’s smile and all thoughts of any failure dissipated. He was every right answer.
I turned the papers in and shortly after got a call for the “Parent Interview”. This is where they sent down with the parent(s) and talk about how the child is at home and expand a little on the narrow fill-in-the-circle questions. Prior to sitting with me, the psychologist had his teacher fill out the forms and had a “Teacher Interview” with the same (or similar) questions. All of this would eventually be looked at for common traits.
I wasn’t nervous about the interview until I was at the interview. When it comes to Judah and the whole diagnosis business, it really doesn’t matter much to my husband and I because our son is who he is. What is a diagnosis to us? It doesn’t change anything. However, my husband had always been reluctant to have a name tagged onto his delays due to how other people would treat him or see him. People would start to see his diagnosis rather than who he is and that was troubling to him. I didn’t really feel that until I sat down today at the interview and realized that while focusing on certain aspects of his behavior in order to classify it, that eventually (to many people) those behaviors would outweigh his incredibly loving personality. That’s what made me nervous. Not so much discussing things in order to achieve the necessary means, but feeling the future weigh in and I was alone. My husband, my stable point who argues with me about most of Judah’s idiosyncrasies, wasn’t there due to work. So there I was and on came the questions.
- Is he affectionate?
- Does he have any repetitious behavior?
- Did he reach milestones roughly on time?
- When did you first see differences?
- What was it that caused you to think something was different?
It was to last 30 minutes, but I found myself trying to explain my explanations and we were there for an hour. What is it about being a parent with a child with delays or autism that makes you feel like you have to explain things and then explain those explanations until there isn’t much left to even dissect?
After the interview I was broadsided. I’ve been dealing with health issues that messes up some of my short term memory, so at some point the dates of all these meetings and what would happen this year got mixed up and I thought that the diagnosis would come after the years end. I kind of put it off in my head. So it took me completely by surprise to find out that in just shy of 4 weeks he would be diagnosed with something.
It just made me really tired all of the sudden.
In a few weeks Judah will meet with a specialized team at school that deals with autism testing (I just came up with that because I forgot their professional name). They will play games with him, ask him questions and he’ll play with a lot of toys in order for them to see how he reacts to things and communicates, etc. Then two weeks after that we’ll all sit down, teachers and parents, and go over the diagnosis and what comes from that.
The only frightening part to me is that Autism is still roughly an “unknown” and the world isn’t very accepting of people with mental disabilities at the moment.
So what do you do if your child is diagnosed with Autism? Here’s my advice.
You let go of your preconceived ideas of what is normal and you find happiness in the unique and fantastical world that your child brought with them when they were born.
You stand up with the millions of other families battling this epidemic and you help support the foundations that are trying hard to research and develop ways to help children and families affected by it.
You fight for the rights of people with mental disorders so that they can have a future and the promise of the dream we’ve all been given the right to. And you applaud the businesses in your community that do employ teens and adults with ASD.
You gain a deeper sense of gratitude for the support, family, friendships and love that are unconditionally accepting of your family.
Part II will be posted next month. Until then, life goes on as it always has – with its joys and struggles like any family. They may be different in context, but the feelings that come with them are the same.
I hope this helps someone that is looking into what comes with getting your child tested for Autism and if not, I’m at least thankful to have gotten to not feel so alone in the writing of it.