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One year

Please forgive this long post – I will attempt to be way less long-winded in the future.

But today is a big day, in a way. It’s an anniversary of sorts.

One year ago today, I was told that my son Nathaniel has Autism – PDD-NOS to be exact.

About 6 months before that, in August of 2011, we were referred to Early Intervention Services by our pediatrician, mainly for Nathaniel’s speech delay. He was 18 months old & had no words. None. I used to get so aggravated when people would ask on evals & questionnaires, “Besides mama & dada, what words does your child say?” My son doesn’t say mama or dada and thank you so much for rubbing it in again!

In early September 2011, Nathaniel was evaluated for intervention services. Again, even though he didn’t wave hello or goodbye, had started walking on his own at 17.5 months, (after over 5 months of cruising along furniture) and had generally been on the late side of “normal” on all his milestones, I honestly really thought the big issue was speech & that was it. That evaluation was so painful. He was tired, cranky and did not want to work with the women who had come. And when he came away from the other side of the room to attempt the tasks they put in front of him, he could do almost none of them. Even ones I had seen him do. I kept chanting in my mind, “Please show them you can do this. I know you can do this.” As much as I wanted services, I didn’t want him to be seen as less capable or less intelligent. As soon as they were done with their test, he fell asleep on my lap. And they went over the scores, telling me that in every area except one that had to do with something social, he was very delayed, scoring at 10 months old and younger for some areas. And I cried. I cried off and on for the rest of that day and night.

Yet despite this, all we were granted from EI was one weekly session of Occupational Therapy and one weekly session of Developmental Intervention. I wanted Speech therapy so badly for him, but they said that this combo works with most kids and he wasn’t ready for that kind of therapy. And I wanted to believe it. Me & my family continued with our delusion that after a few months of these two weekly sessions, Nathaniel would be talking & totally catch up.

A few months after that, right around Christmas 2011, Nathaniel got a whammy combo of an ear infection, sinus infection, bronchialitis & possible pneumonia. He spent days having long periods of screaming & crying & generally melting down, plus having night terrors that scared the bejesus out of us. This went on from about December 20th or so, all the way through New Years. Every night of that awful time, Eric & I searched online, trying to find out if these episodes were tantrums or something else. This could not be normal. He’d had night terrors and meltdowns prior to this, but this period of time was just so extreme. Finally, January 2nd, we were desperate and I called our pediatrician. He agreed – this was not normal. He referred us to a neurologist.

It took a month for us to get our first appointment – but in comparison to getting a developmental pediatrician, that was fast and in the meantime, we continued with our developmental teacher/therapist and were granted one speech therapy session. We dropped OT because we were dumb and in all honesty, hadn’t gelled with the two OT’s that we had met up until that point.

Anyway, in early February 2012, we had a consultation with the neurologist, who lined up a bunch of evaluations, including an EEG (he’d had one a few months earlier when we had some concerns & it had been normal – this second one was too), blood work (also normal), a behavioral assessment (which I was fairly clueless during, looking in retrospect) and another appointment – which I thought was to see an audiologist to test his hearing, as they had recommended that. I was wrong about that “AU” in the appointment list. Stress had sort of messed with my brain & probably Eric’s brain more than we realized.

Important note: Prior to my son’s diagnosis, I knew nothing about Autism, other than believing that it made people not social. My son was social – when in a good mood, around people he knew, he was a smiling, giggling, cuddly kid – he couldn’t be Autistic. He seemed to like other children, at least the ones in our circle. So when my searches would lead to pages about Autism – I’d x’out.

So on March 7, 2012, I brought Nathaniel with me to the neurology center, expecting a hearing test. A doctor & therapist led us to a little room with toys & so forth. Upon entering the room, Nathaniel started flapping and I was asked, “Does he do that a lot?” and I said, “Only when he’s happy.” Again, I knew NOTHING about Autism & did not know that flapping was related in any way. So then the test began. The doctor worked with Nathaniel while I sat with the therapist and answered a variety of questions about his behavior, sleep, eating habits, etc. After a short time, I asked the therapist, “How is this going to test his hearing?” (Again, I thought the AU on the list of appointments was for “Audiology.”)  The therapist was, understandably, really confused. She said, “This is a test for Autism.” My stomach dropped, my heart skipped a beat & I got a little woozy. Then I said to myself, this is just a formality, no reason to get stressed. The doctor and therapist left the room to score the test and Nathaniel kept on playing while I texted Eric & said this was not the test we thought it was.

The two women came back in and fairly bluntly, but nicely, told me that Nathaniel had PDD-NOS and “mild Autism.” They then explained to me some recommendations for therapy, about a follow up appointment that we’d have there to get more information and gave me some reading materials, etc., etc. I was in a daze. I asked them, “So what does this mean for his future? What is his prognosis? Did you just say that he has Autism?” Again, I had been totally in the dark. And the doctor said, basically, that there’s no way of knowing. Early Intervention has been shown to help. He could totally catch up with his peers by kindergarten. Or he may regress. “He may never talk.” I was blown away.

I called Eric and tried to tell him as much as I could while driving home from the neuro office. I then called my parents’ house to tell them; my mom was out, so I spilled everything to my dad, who took notes for my mom. I did this all while Nathaniel listened to music and watched a cartoon.  I then headed to my parents’ to drop Nathaniel off for the afternoon, while I would be at work. I sat on the couch in my parents’ living room and went over it again for my mom, holding back tears. I kept thinking and saying that our whole outlook had changed. A few months earlier, we thought he’d be totally caught up by now. Now we had no idea. We just knew that we had a lot of work to do, a lot of therapies to set up, a lot of phone calls to make. And then I drove to work. The rest of that day and night are a blur now. I remember crying a lot.

I don’t want to leave this on a downer.

In the year since that day, the Early Intervention program granted us additional therapy (our therapists rocked), we added private therapies (also rocked) and with the help of these amazing therapists and wonderful family support, plus a network of special needs parents giving advice, consolation, commiseration and laughs through Facebook community pages and blogs, things have gotten a whole lot better.

Nathaniel is talking. A lot. He can be hard to understand, but he tries and we keep working at it. He waves hello and goodbye, dances and sings (but he’s not trying out for a talent show anytime soon). His motor skills have come so, so far – he can kick a ball, he can jump, he can walk down a balance beam just holding someone’s hand, he can put together puzzles & stackers and sort shapes like nobody’s business. It would take pages to list all the things he can do now that he couldn’t do before. And although he still has meltdowns, plus typical 3-year-old tantrums and sour moods, he is much happier now than he was before. It always pained me that although he’s had some great times & crazy giggles, he didn’t seem as happy as other kids, from the time he was a baby, so his happiness is paramount to me.

We have bad days, for sure. But we have some great days – amazing minutes and surprising hours.


5 thoughts on “One year

  1. Though our kids are very different, I relate so much to those early feelings of thinking it was just a speech delay. He was otherwise so bright and happy! I have a hard time thinking back to the time “before.”

    Welcome to blogging!

  2. our kids are different( R’s diagnosis was severe autism at that time – so depressing ) but our thoughts and journey are the same ( i just had my 6 year anniversary )
    wish you luck
    Things will keep getting better and better
    Intervention and unconditional love and acceptance have been our formula

    • No need to apologize for the two comments. 🙂 And thank you for your first comment as well. It is a common thing I find that although all of us parents w/ children with an ASD diagnosis have different nuances of difference in the diagnosis & very different children as well, that there is so much that we also have in common.

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