I have these two little boys. They are awesome. Of course I think so, I’m their mom. But ask just about anybody, they will agree that for the most part, they are indeed awesome! Really. So, like most creatures in the human species with any self awareness, my kiddos have some challenges.
Each of the boys have had IEP’s (Individual Education Plans) since preschool. These were created in Colorado. However, we moved to Atlanta in the middle of Taylor’s Kindergarten year. Georgia accepted the IEP’s but stated the boys would need to re-qualify for services, (IEP’s) under Georgia rules and regulations. This means that the stack of fill in the bubble tests were sent home (again) along with the 10 page questionnaire about each kids arrival into the world. Did I have a full term pregnancy, were there any complications, did I smoke crack while pregnant, or anything else, at what age did they sit up, talk, form a word, form a sentence, did I notice anything different about them? On and on and on it goes piling on guilt and shame and blame that somehow your kid should be normal and you have screwed him up by being the closet drunk and junkie we are sure you must be because kids don’t just turn out like this otherwise! Apparently I am generally an unfit mother too, because I have no stinking idea what date my kids passed their toddler-hood milestones. What I remember is taking them regularly to their pediatrician for all their well baby visits and that the doctors felt that they were where they were supposed to be from a healthy kid standpoint. Who cares what day it all came together!! So regarding these questions I did what any good mother would do and I googled baby development and what was a normal age for the stuff to happen and I made up dates that fit.
Anyway, I could go on and on about the tests. Bottom line, while they are there to best provide the assistance needed for the individual, they are painful and shame soaked.
The meeting date arrived after all the data had been collected on each kid and each specialist was there with their conclusion about what the issues were and if each boy qualified for services (IEP’s). While part of the parent inside of me wants them to be found to be perfect little students who just need more vitamin C and they will be right as rain, (or some such simple fix) the practical person inside me is begging that they will qualify for the services they so obviously need.
So there we were all around the big conference table I didn’t even know existed in the tiny little school. Every time I have met there before, I have had the pleasure of sitting in a cute little chair 10 inches off the ground pulled up to a table 18 inches high. But not today for the big important verdict. Three pages or so into the full report on Taylor I read something that went sort of like, “We find Taylor to qualify for services based on a highly probable diagnosis of Autism Spectrum Disorder.” At the time I was unphased by the statement. Absolutely, I said to myself. I have known that for years! What I didn’t expect was how heavy that reality was going to bear down on me in the coming weeks. One kid down, one to go.
Now, Peyton is a shear delight. He brightens up the whole room wherever he is. I have been at the school and had teachers ask me if I’m Peyton’s mom then proceed to tell me how he has brightened their day. But, and there is usually a but, he is struggling to focus on his lessons. He is impulsive and passionate. Not bad qualities I dare say, but clearly difficult to manage in a room of 23 six year-olds. Given the results of his tests he was found not to have a learning disability. He did not qualify for services. Though it was concluded that he very likely has ADHD, he would need to receive a medical diagnosis in order to continue to receive services.
Are you kidding!?
It’s been two months since that meeting. A few weeks ago after a struggle with the insurance company to justify it, I took Peyton to a Developmental Pediatrician. But not before I completed my homework for that visit. What was the homework? More surveys and bubble tests of course! (Why don’t I ever save a copy of these things?) This round of questions and bubbles I didn’t fight as hard. In my mind was just there to get my official ADHD diagnosis so Peyton could continue with his services. Also, maybe this doctor would have more insight on how to parent kids like mine and have some suggestions for summer camps, and other remedial stuff like that. I was tired really. The waiting room, or living room rather, as the practice is in a building that is a house, was cold. I wanted to lay down on the couch and take a nap. A combination of physical tiredness and emotional overload, and I felt a headache coming on just to top it all off. I must have been looking fairly relaxed by the time it was our turn to see the doctor as he did ask me something to the effect if I needed a blanket or another pillow.
He asked me what brought us to him and what I was seeing in Peyton to which I wondered to myself, haven’t you looked at the bubble test and the notes I sent in? But I went on trying to describe my son. Trying to verbalize my thoughts and feelings, which has never been a strong point for me. And while I’m stumbling over words and jumbling up my thoughts I’m very aware of how stupid I am sounding. But this kind doctor listens and nods and watches Peyton as I talk. Finally he picks up the bubble test and questionnaire.
We discussed more of what makes up Peyton as well as the scores on the tests from both myself and his teacher. He paused and reconfirmed with me that I had mentioned that Peyton’s older brother was found to be on the spectrum. I confirmed that it was the case. He paused thoughtfully and said, “What would you think about Peyton being on the spectrum as well?” A bit like a deer looks in headlights was probably what my silent response was like. Given an individualized explanation of the 6 qualifiers of the spectrum, it made sense that Peyton fit into it. But knowing that ADHD is intertwined in the spectrum often, I asked point blank, “Is ADHD off the table then?” As he glanced over at Peyton engrossed in what he was playing with, where he had been sitting doing the same thing for several minutes, he responded, “Yes.”
I had two main thoughts when I left that office. One was, at least I only have to learn about one primary disorder instead of two. The other was, as challenging as this all is, its nice to have it pegged. While these symptoms and idiosyncrasies have been part of my life since the boys arrival into my world, I have to put aside that they may grow out of being ‘different’. I have to let go of the idea that kindergarten was hard, but he’ll grow in the summer and be more mature for first grade. While I don’t see these challenges as negative and I understand that they will grow and they will mature and there is help wildly available to get them to a place to perform to be the best they can be, I have embraced that this autism thing, high functioning as it is, is part of our lives forever.







Comments
BeckyH_253
This is like reading a story that someone wrote about my life. Our younger son is diagnosed, but we’re about to take our older son to the developmental ped – talk about feeling like a bad mom; he’s older, we should have noticed sooner. And those tests – I feel the guilt and “I’m a bad mom” stuff when I fill them out, too! Thankfully, there’s this wonderful site where you can find out you’re not alone, and your kids ARE great, and we ARE good moms!!
Carrieanne
I hated filling out all the questionnaires and forms about my son. I knew they were necessary and I knew that I was going to have to fill the same ones out for the school, for the dev. pediatrician, for the primary pediatrician, for the neuropsychologist, etc. By the time I had a diagnosis, I was so sick of filling out papers that said what was “wrong” with my son. None of them really encompassed what he was at all . . . even the ones that had a small space at the bottom for “What are the positive things about your child” Every time I got a new stack of forms, I knew I was going to spend some time feeling horrible.
At one point, I remember thinking “Who cares if he doesn’t have any friends? Or that he doesn’t appear to want any? Maybe he is better off that way! Who decided Social Skills were so great? If he wants to sit in a corner and read a book about black holes and atomic structure every day, why is that a problem?” The forms definitely make you defensive of your baby after a while.
Tammy
We saw a new Psychiatrist yesterday in trying to figure out why meds for the ADHD seem to only work for a couple of months and then stop working no matter the dosage. At one point, he made me laugh by saying he could “label” him as “goofy” and in the end it makes no difference. We still need to figure out the puzzle and help my little boy put the pieces together the best we can.
Joyce
Having just gone thru this with my son, it feels so devaluing. The teacher and special ed coordinator person are saying how bad my kid is (thats what it feels like, not really what they say) and I need to fill in yet another questionnaire, which the psyche person says to be honest when I know they probably want me to play down his ability. My beautiful, fun loving, highly strung and delightful child.
I know they need it for funding and I am grateful that he wasnt subjected to further testing – very grateful for that – just gives me a few days of heartache that he isnt able to be one of the class as he so desires to be.
But today I say, lets celebrate us mothers/parents who stand up for our kids, no matter how hard it is.
Stacy
despite having a spectrum diagnosis for my oldest, we’ve just recently gone through lots of school evaluations. I appreciate your story, and I think it is great that you got a dev. ped that could point you in the right direction.
Spectrummy Mummy
I found myself nodding through much of your post, apart from one thing: the title. I’d say you’re the very opposite, and your boys are in excellent hands. Hopefully those labels prove to be useful signposts in your journey. Good luck with the school!
Y'vonne
Oh can I relate. Like many of the parents in this community we share similar and different stories. Prior to my son being diagnosed with ASD he had an SPD verdict. In our county they would not offer services for that and we had to pull in a district attorney to move things forward. Then of course he received his ASD diagnosis but he was prejudged so he received minimal services. We moved 150 miles away to a new county and the entire door opened for our son.
I do feel your pain as well. We just went through a similar session since we moved. My understanding is many other states and school programs have 30 days to put them in special education with the same services. Then they must do the entire evaluation over again. It’s so taxing for us parents. I’ve lost count how many times I’ve been through this process with multiple individuals and service providers and my son isn’t even 4 yet. I know keep a file and reuse things.
Martianne
I appreciate this story. We are in the midst of big ????’s with my son. First, it was sensory stuff. Then, we were told no way he’s on the spectrum, but got an ADHD dx. Now, several of his therapists think he is an aspie, but that I have helped him accommodate and function so well that the nueropysch eval at 5 did not catch it. Another person who works with him thinks OCD and Anxiety. I don’t care what the letters are. I just want to help him be the best him he can be and sometimes I think if I could get an accurate dx, it would be a better starting (restarting) place than we are at. At other times, I am ready to throw out all dx’s, therapies and therpaists and just drive on with life. Such a road to travel, but glad my little man is on the journey.