The Diagnosis by Jillsmo • All About Autism Series 2011

This post is generously submitted for the 2011 All About Autism Series ~ by Jillsmo:

It’s hard to say when, exactly, I knew something was wrong because I had postpartum depression for Child 1’s first 6 weeks so it always felt like something was wrong. He was a very mellow and calm baby; he slept through the night at 3 weeks, he rarely cried, I was always the only person in my mother’s group who could sit down to eat a meal, while he sat calmly in his car seat.

He babbled on time and started combining consonants when expected, but he didn’t crawl until 12 months and didn’t walk until 18. That worried me, but I figured he got there eventually, he’d get everywhere else, too. While we were waiting for him to move his body, however, his language stopped progressing. I said it was because he was putting all of his energy into getting his little body moving and couldn’t do them both, so once he started moving, I started waiting. Waiting for that first word, waiting for something. “Mama” “Mama” “Maaaaaaaaa-mmmmmmmmaaaaaaaa” I would repeat again and again, hoping he would copy me. But, nothing.

At that time we were part of a preschool co-op made up of 5-6 other families and I would spend a few days a week hanging out with all of these other toddlers. I would watch in amazement as they played appropriately with toys, started using words, played with each other… while my child was more interested in the kitchen drawers and the curtains that separated the rooms. I remember watching one child as he played with a puzzle and thinking “my God, he’s so normal.” I didn’t understand why it was so hard to get Child 1 to want to make puzzles, or paint, or play with other kids. All he wanted to do was run back and forth along the pathway in the back or sift sand through his fingers for hours.

I very distinctly remember at his 12 month doctor visit the doctor asking me if he was pointing. “He doesn’t have to actually stick out his finger,” she says “he can just gesture at things.” Well, I thought, I’ve seen him stick his arm out to the side, so he must be pointing. I told her he was, but now, knowing what pointing actually is, I know that he definitely wasn’t. Huge red flag right there. It makes me angry, thinking about it now. She’s the medical professional here, she should have caught that. At 18 months when there were still no words she referred us to a Developmental Pediatrician.

At 2 years old, the Developmental Pediatrician diagnosed him with Global Developmental Delay. Another doctor moment I will never forget is sitting on the floor with them both, and she tells me, specifically “he’s making good eye contact so he’s not anywhere on the spectrum.”

Man, what a relief that was. Whatever the problem was, at least it wasn’t autism!

With a diagnosis, she sent us off to the Regional Center for Early Intervention. He went 3 times a week and also got some speech therapy. He started learning sign language and once he’d had a few signs he almost immediately started using basic words. I guess something clicked in his little brain and he figured out that he was capable of using language to communicate his needs. I watched as the speech therapist got him to say his first word, “ball,” by not letting him have it until he said it. Awesome!!

Except, we went back to the Developmental Pediatrician around 2 ¾ for a follow-up. That day he had a hard time following directions, he didn’t want to cooperate with her, he was a little melty for the whole thing. Then, she changed his diagnosis to PDD-NOS; she explained that it was on the autism spectrum but it wasn’t autism. It was at that time that I got pregnant with Child 2.

The next months were spent with me being in denial: “he’s on the spectrum but he doesn’t have autism,” I would repeat, as if there was actually a difference, as if he actually didn’t have autism. I didn’t want to believe it, and he was still so calm and mellow and sweet and essentially non-verbal that it was easy to stay in denial about it. And I was mad at the Developmental Pediatrician, who had assured me he wasn’t on the spectrum. He’d had a bad day that day, she doesn’t know him. He doesn’t have autism.

A few months after his 3rd birthday and a few months before Child 2 was born, the scripting started. At first, it was adorable. This cute little boy would march around repeating “I think I can, I think I can, I think I can.” How cute is THAT? But then it changed to things he’d heard Elmo say. And eventually it was constant talking, all the time; but never an original thought or word, it was only Elmo. All Elmo, all the time. I hate Elmo. At that point was also when the meltdowns started; screaming, crying, wailing, with absolutely no explanation other than whatever Elmo had said. That was also when the night terrors started. He would wake up in the wee hours, screaming, crying, wailing, for no reason that we could find, and it could last for hours, until it just stopped and he went back to sleep.

It was becoming impossible to stay in denial. I spent the last few months of my pregnancy feeling bad, and sad, and helpless and horrible. We needed to do something else, this is just getting worse. He’s not communicating normally, he screams all the time; we have no idea what to do, plus a baby on the way.

Apparently the physical act of giving birth was cathartic enough to snap me out of my denial. I got to work on researching treatment options in our area. I found a good one and I found an advocate who would help me get the school district to fund it. Child 2’s 3 month birthday was the day we started our home program; 15 hours/week at home for 2 years, and that was in addition to 15 hours/week of preschool which included speech.

I often think about those months I spent in denial and I feel guilty that I didn’t snap out of it sooner, but today he’s a super verbal, happy, still very calm and mellow, smart 9 year old. He is still very much autistic, but he’s doing better than I ever could have imagined, 6 years ago, when I had no idea what was going on. I honestly think that one day he’ll be able to live independently. I don’t know if starting 9 months earlier would have made much of a difference, I’m just so glad I got there eventually.

Jillsmo blogs at Yeah. Good Times…visit her there! Want to know who she is?  “I have 2 beautiful boys: Child 1 is 8 and has autism. Child 2 is 5 and OMGDOESN’T. I have this blog because lots of random shit goes through my head throughout the normal course of a day and I need a place to put it. Mostly I just ramble incoherently about nothing. I also curse a lot. Sorry, Mom.”

“I should have known…done something faster…”  How many times have any of us thought this.  How many of us replay the moments we discovered, the moments we were informed?  I do.  Do you?

9 Responses to The Diagnosis by Jillsmo • All About Autism Series 2011

  1. Your story sounds a lot like ours with child #2, only he’s only in 2 1/2 hours of preschool a week where they rotate his speech and OT, and the school thinks he’s ready to mainstream preschool in August. My older child’s ABA therapist(still stuck in red tape for #2), and I think they’re on crack.

  2. Jillsmo, please don’t worry about not getting on board with dx earlier. I believe a wonderful, loving, and actively enagaged parent, like you, is the best therapy there is.

  3. Your story sounds SO much like ours, except we didn’t get that dx til 5 b/c Katie’s meltdowns were just girl drama, and when she didn’t follow instructions it was just b/c she had a strong personality. Yeah, OK.

  4. Very similar story here – I remember crying with relief when my son laughed for the first time – was that because of my PPD or because I already sensed there was something different? And at 18 months, asking my friends how they taught their kids to roll a ball back and forth or play with toy cars and get blank stares in reply as they had no idea why I would be asking such a question.

    My son sounds similar to yours now except he’s not very calm or mellow – lots of anxiety and dramatic outbursts around here. While there’s no way to know how things would be different, I don’t think we can beat ourselves up for doing the best we can at the time based on what we knew then. I am constantly learning more about how to be a better parent, so I think that’s an ongoing process for everybody.

  5. Similar story here too, except we didn’t get a DX till 7 because he was hyperverbal and hyperlexic, and his rages and meltdowns didn’t start until almost 6. But there was a lot that I overlooked. Not pretending, not climbing stairs properly, poor tactile sensitivity, the whole potty training BS. In fact, the whole hyperverbal/ hyperlexic thing should have been red flags, but you never thing the good out of ordinary things are things that should be cause for concern. :sigh:

    Good post, Jill.

  6. I doubt those 9 months will make a difference in his long-term prognosis. The downside of the constant early intervention drum beating is how crazy you make yourself during those first 5 years thinking that every little thing you do or don’t do is going to make or break their future. The early years sucked. I wouldn’t go back for all the money. Loved hearing your story.

  7. Don’t beat yourself up about those “lost” 9 months. There are many parents who “lose” 9 years in denial. From the sound of it, you’ve done much much more right by Child 1 than you’ve done wrong and he seems to be thriving because of it.

    Those first few years really are the worst. It only gets better and better.

  8. Don’t feel guilty. If we felt guilty for each thing we didn’t do, we couldn’t function. You’ve done an amazing job getting him as far as you have. I doubt those 9 months would have made a difference.

    We had a similar thing…everything was blamed on his cerebral palsy, with docs not looking past that. It took years for the Autism diagnosis. Even longer for the epilepsy diagnosis.

    Thank you for taking the time to discuss this and being open about “A Diagnosis”.

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