Friday, April 15, 2011

Battling Uncertainty and the Long Road to Actual Help

I believe that one of the hardest things about parenting a child with autism is the uncertainty. What treatment options are best for my child? Will he grow up to be independent? Happy? At what point do I need to bring in an attorney or advocate to help my child get what he needs from the school system? Should I consider medication?

You can probably add your own long list of uncertainties here.

I am always running into people who really seem to have it all together. They have a doctor who acts as a case manager and their speech therapist regularly confers with their occupational therapist. They have a behavioral aide who comes to their home and loves them so damn much that they go to IEP meetings for free.

I, of course, am intensely jealous of these people. I also have a sneaking suspicion that they don't actually exist.

I don't know that anyone has all of those things, but some lucky people have parts of it. I feel like I have been battling this uncertainty for so long all on my own that when I went to an appointment with a developmental pediatrician recently and felt that she wanted to look at all aspects of my son's treatment and care and help me, I was almost ridiculously grateful.

See, my son Jack didn't qualify for services in my county's early intervention program when I had him evaluated at age two. The woman in charge of the evaluation looked at my son, a second child and a boy, and she looked at me, a parent whose older child had been speech delayed, and I think she saw an overreacting parent. Her evaluation of Jack was much less thorough than that of my oldest son and resulted in them saying that his scores were low, but not low enough for him to need services.

They told me that this was a good thing. I was afraid for my son, so I grabbed on to the hope that he wasn't really delayed and ran with it. When you live with an undiagnosed child with autism, however, you can't hold on to that hope for too long before reality sets in.

I knew that something was going on with Jack, but it was really difficult to get anyone to listen. Everyone kept telling me that boys talk later than girls and that sometimes second kids don't talk because their older siblings do it for them. They suggested that Jack didn't feel the need to talk because I anticipated his needs. I had a preschool teacher tell someone from the county's older child early intervention evaluators that she had no idea where I'd come up with the idea that Jack had autism and that the idea was ridiculous.

We hired a private company to observe Jack in school and they gave us a report that indicated that something was really wrong, but they did not follow up. This is when we turned again to the early intervention evaluations again. They dismissed so much of what was quirky about Jack as him having an off day when he was being evaluated. I insisted that a psychologist observe Jack at preschool. They told us that without her report, Jack would not have qualified for services.

After that, Jack started attending a special education preschool, but never qualified for speech or OT services. Not one of his teachers pulled me aside to suggest that I take him to private therapy or a social skills group. No one ever spoke to us about ABA therapy, which so many parents with autistic children swear by. When I asked Jack's teachers, they looked at him and said, "He doesn't present as a child with autism."

The developmental pediatrician I worked with didn't have much good advice and I eventually just stopped making appointments with her. A half hour in her office twice a year didn't seem to be of much use anyway when no one in Jack's life communicated with each other. Because I was so uncertain and seemed so all alone in my belief that Jack was autistic, I hadn't empowered myself to start making demands of this nature. Frankly, I didn't even know that I could.

I put Jack on a wait list to get him evaluated by a nearby autism center. Months later we were still on the list. Finally, during a screening for a National Institutes of Mental Health study, we found a doctor who really paid attention to Jack and gave him a diagnosis. We were thrilled, but still, follow-up treatment and advice was not in this doctor's job description. Jack was almost five and was heading into an IEP situation where his preschool team originally thought he needed extremely minimal services.

Three years have passed since then and we have managed to put together a plan for Jack. We've used speech therapists, occupational therapists, social skills groups, social thinking consultations, a case-manager at his school, paraeducators, an educational consultant and an attorney. Was this the right group of professionals to use for Jack? I don't know. I mean, obviously I think so, but I'm not an expert.

If someone just said to me, "Do these six things and Jack will have the best possible outcome," I would move heaven, earth, and probably an ocean or two to make it happen. Obviously no one can say that, but it has been so tiring to not have someone to help me coordinate all of this. I wish somebody would have looked at Jack and been able to make knowledgeable suggestions about what would benefit Jack the most.

Based on my own research and concerns, I decided to have Jack reevaluated this past year because it had been so long. We went back to the autism center on whose wait list we had so fruitlessly waited. This time we waited A YEAR for the evaluation. They spent half a day with him, sent us a report and didn't follow up. More uncertainty.

Honestly, I was about ready to give up. After five years of piecing things together by myself and trying to make it work, I was tired of looking for someone to help me. But there was one thing I needed to speak to a doctor at the autism center about. So I called and made an appointment with a developmental pediatrician there.

You guys, I think I found her.

She listened. She gave advice. She validated what we are doing with Jack. She asked my opinion. She rolled her eyes that the people who evaluated Jack hadn't followed up with us and then she answered all of my questions about the report. She gave me concrete steps for how we're going to move forward and she told me that she's looking for information that we can share with Jack's teachers to make things better for him.

She even told me that she would take special care to realize that I live an hour away and will be willing to work with me over email. When the general receptionist couldn't fit me into her schedule for our next appointment and told me to call the doctor's receptionist, that receptionist called me the same day to make the appointment.

There are still so many "ifs" crawling around in my head, but I finally feel that there is a professional guiding me. I'm still the lady in charge, and I want it that way, but it feels good to have someone holding my hand.

Stimey writes a personal blog at Stimeyland; an autism-events website for Montgomery County, Maryland, at AutMont; and a column called Autism Unexpected in the Washington Times Communities. You can find her on Twitter as @Stimey.


  1. It is amazing how writing this brought back so many strong feelings of resentment and anger in me. I was so proactive in seeking help for Jack and it has still been so difficult. I hate that there are so many other parents who don't get what their children need because they are blown off like I was.

  2. wow familiar. We hit the "don't worry about it"s for a long time too (well, it seemed like a long time). My son also didn't qualify for EI until I pushed it enough that he had OT every other week under "clinical judgment" (meaning he doesn't qualify but maybe there's something there). He didn't qualify for any services through the school system either, even though there were definite concerns, all his numbers balanced out to "normal range". Our pediatrician told us that she didn't think he was on the spectrum but he had "spectrum-like qualities" (say what??) She did however get us in for a developmental pediatrician appointment after a horrendous start to preschool. And like you, I found my friend. She gets him, and her diagnosis pushed him into the category of needing help.
    I'm sorry that you and Jack were treated like this. The "what if" game stinks. I hope for you and for Jack that you've found your guardian angel and she'll help you access whatever you need to help jack.

  3. I don't think I ever realized just how rough your journey was to diagnosis. Jack is so fortunate that you persisted, I think so many of us parents feel this way -- kind of floundering, doing a little bit of this, a little bit of that and hoping we get it right. I've always heard that part of a dev. ped's job IS to kind of be that case worker, who oversees the big picture. We certainly have not found that with ours... perhaps I need to get the name of yours ;)

  4. I know the feelings of resentment, anger and what ifs. Thank you for writing this piece. It really spoke to me. xo

  5. Hey Stimey, We were "lucky" in that Jake's lack of language qualified him for EI services right from the start. And although we too suffered from a lack of diagnosis for a while, it was a much shorted delay than yours. I think as you get "higher up" on the functioning tree, it gets harder and harder for people to get proper services and guidance for their children even though they so clearly need this.
    I had a friend whose very aspie child just falls completely apart in regular classrooms be told he didn't qualify for any services or a special school because he scored so high on his academic testing.... which took place one-on-one in a small quiet room - ARGH!
    Glad you finally found your "guru." It is so hard to feel alone in this and having a wise someone with whom you can discuss things and bounce ideas off of is priceless.

  6. Oh, have I been there, and in many ways am still there. And it is the most frustrating place in the world. The gray area. The unknown. Where you just want to scream "WILL SOMEONE PLEASE LISTEN TO ME."
    Good for you for finding someone who does.

  7. My eight year old was just diagnosed with autism in November. Until then, the school just thought I was a neurotic mother who expected too much. They may still think that.

  8. Oh gosh, this is also so very familiar to me. In fact, JUST BEFORE I read this, I was on the phone with a family member who's in the medical field asking how on earth I'm supposed to manage everything on my own. Those doctors are out there, it's just so damn hard to find them. I'm SO glad you did! (And what is so scary, is that you are an educated, involved, autism-savvy mom. Imagine how many people out there don't have the resources that we have. How on earth do they get help for their kids.)

  9. I'm sorry to say that for once, I can't relate...I think I'm always the last to realize when my daughter is doing something not normal. She's my only kid,and to me, she's perfect. So, when they told me at age 3 she could be autistic, I wouldn't listen...the word was too scary. Now I know it's not that scary a word... it's different for everyone, and it doesn't change who she is at all. But I still sometimes have to ask other people what normal really is....

  10. Yeah, our NICU-recommended pediatrician called my son by the wrong name for 18 months (even though it was on the chart in red Sharpie) until I fired him. We waited 45 minutes past our appointment time in the waiting room for a neurologist to tell us that although Evan wasn't walking yet at 22 months it wasn't a concern because of how coordinated his crawling was...but he probably had autism. We had an MRI at 24 months to see why he STILL wasn't walking and the triage nurse wrote "possible MR" on his admission paperwork when I told her we were there to rule out brain damage. I alerted the school that Evan would need PT, OT and speech from them, and possibly a para and was told by the diagnostician that he didn't actually need an IEP, I should just enroll him and see how he did. So, yeah, I get the feeling of being an island...

  11. Jeez, this stories are giving me heart palpitations. It is shocking how parents get so easily dismissed. I am sorry that so many of you have had such tough roads. You have all of my empathy.

  12. Thanks for this post. I'm going through this right now with my almost 5 year old. I'm getting "he has some symptoms of concern but not bad enough to be considered on the spectrum." That was his preschool therapist's opinion. His OT and speech therapist don't talk to each other. And the ped looked at him for 5 minutes and said he's fine. (Looking for another one now.) Worse, we're posted in Australia about to move back to the Maryland/DC area in 7-8 months. So I'm going to have to start all over again when I get there... Sorry to vent! It's distressing to hear you had problems too. I was hoping it would be easier in the States.