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.