Saturday, March 20, 2010

Starting the Autism Journey

He likes to pretend to read this sign.

I went to the Autism Expo in Carmel yesterday. It was better than I thought it would be, in that most of the booths were offering information rather than trying to sell things. I picked up lots of handouts on various playgroups, doctors, services, camps, Medicaid waiver, etc. The highlight of the visit was talking with a mom who runs the TACA (Talk About Curing Autism) Indiana chapter. She gave me the boost I needed to keep going with this thing, and feel like I'm not so helpless.

I've been frustrated again this past week with the whole situation, because I felt like I was again at a standstill. It has become more and more apparent in the past few months that Hayden definitely needs services outside of the school, especially with summer coming up. I am very happy with what he gets there, but it's only 2 hours a day. And since I work, I can email/ call the nice ladies, but it's not the same as a visit to a doctor/center and getting to pick an expert's brain face to face for ideas to do at home. Plus, lately some advice from friends and family has been contradictory, and I've felt uninformed enough to sort it all out out my own. Milk? Soy? Blood Test? No? Yes? Doctor? Center? Services? Money? What's my name, again? I don't have time to read every diet and autism book and web site out there.

Friday I did call his OT from school, though, and she gave me some ideas for things to do at home. She also told me about 3 objects he uses at school to calm down, so I went right out to Walgreens after work and bought them. He had a big smile on his face when I showed him the mini-back massager, I think he recognized it from school.

The biggest frustration, though, has been the waiting list to get a doctor, and get him the other services he needs. Let me give the background story on my journey thus far, to get Hayden help.

Last year (early 2009) I was beginning to realize that Hayden was autistic. I had known since about 18 months that he was behind, and that there was something there that needed attention, but the "A" word wasn't really a part of my thoughts. (As a teacher I had mostly dealt with kids who were severely autistic, and this was not comparable to Hayden's situation.) I expressed concerns to my family doctor on two or three different occasions, but was not referred to First Steps, and did not learn about First Steps until he was over 3 and therefore too old for the program. I did research on my own, and began to realize more and more that his behaviors and developmental delays pointed at Autism. I tried to talk about it with my husband, but he shrugged me off. At one point he said, "you're still on about that?" I can still remember where I was when he said that to me, and how it hurt my feelings. I felt like the two people who should be listening, my child's doctor and my husband, were shrugging me off; that no one was listening to what I had to say.

I talked to the special needs teacher at the school where I worked, who knew a lot about Autism. She pointed me in the right direction for checklists, and agreed that my concerns about Hayden's behaviors were valid. She suggested I begin the process of having Hayden evaluated through the school. I wish now, looking back, that I had also started the process of a medical diagnosis as well. I did not know how long it would all take, and that they were two separate things, and each had its own importance. I figured if one or the other evaluated him and got him services, we'd be good to go.

It was around this time that I also spoke with Emily's mother Jane. She encouraged me that a mother's instinct is very important, and that if I had genuine concerns I should pursue them. No one spends more time with Hayden than me, she reminded me. If I thought something was off, I should do something about it. It was the push I needed. I'm sure my own mom had told me the same thing, she's been so supportive. But it was different coming from a mom I barely knew, because I knew she would be saying her true feelings, and not just being my mom and giving me encouragement. : )

In March I began calling the school for an evaluation. I left messages, emails. I called every person listed on their website that even seemed remotely related to special needs. No one acknowledged in any way that I had called. I called/emailed from March to May.

Through the Internet I found out about First Steps, and so in June I called there to find out if they could evaluate Hayden. I was transfered or given a new phone number about 5 times, but finally got a hold of a really nice woman who explained my rights to me. She said I needed to physically go in to the school and request the paperwork, and that they couldn't turn me down. She said that by law they had to acknowledge receipt of our paperwork within 10 days, and make him an eval appointment within 60 days. Jason went in personally to the office (since they are only open during school hours, we couldn't go in until June.) He was told that the person in charge of the paperwork only works during the school year, and that the secretary didn't know where the paperwork is. But, she comes in sometimes in the summer, and you can leave a message. ha! Sure, I'll leave my name and number. A month later I went in personally to ask again, and again in August.

In August we finally got the paperwork the first week of school (by going in personally). I filled it out (probably 20 pages long) and gave it back to them. There was no response for over 2 weeks, so I called and of course got voice mail. I left a very polite message stating that I knew that by law I should have been notified within 10 days that they had received our papers. She called back within an hour and said that Hayden would be evaluated soon.

I would like to put in a disclaimer here, that I have heard that this person is overworked. I don't really know her or her job, so maybe she's great at her job and just has too many responsibilities. All I'm saying is that I wish my calls/emails had been returned sooner, and that I shouldn't have had to pull the "I know my rights" card.

Hayden was evaluated by the school in November, and then we had his explanation of services meeting a few weeks later. Mom came with me and asked lots of good questions. But despite my worries that they might blow us off, the OT, SLP, and developmental teacher all agreed with my concerns, and noticed behaviors that pointed to autism. They explained that we would need a medical diagnosis for services outside of school, and that they couldn't officially say if he was autistic or not, that I would need to get a doctor's diagnosis. I wasn't too concerned, since I knew he was getting services through the school now for free. It was a relief for something to finally happen! Figuring out how to get him to the developmental preschool was another hurdle, and a long story for another day!

I debated where to send paperwork in for a medical evaluation. Local people all said "Riley". I looked on the Internet at the scads of options, I asked friends their opinions. I called Insurance to find out who was in-network (basically no one). When I took him in for his new pediatrician in October, she listened to my concerns and had me do a short (6 pages) questionnaire which pointed to a developmental disability. So she said she would send in a referral to the Riley Child Development Center. October is the end of Soccer Season for Jason, a very stressful time in my life. Then starts the holiday season, which is hectic for everyone. I promptly forgot all about the referral. I remembered right before Christmas break and called Riley, asking what ever happened with the supposed referral-- they said they sent me a packet in October. Um, nope. So they said they would send another. "If you don't receive it by January 6th, call us back." .sigh. I got it in early January (another 20 page monstrosity), filled it out and sent it in, and they warned that the waiting list was 6 months, and the cost was $1000-$3000.

Then the Bus Incident happened (another long story for another day) and the head of special needs said that I should be sending Hayden to the Riley Sarkine Center for Autism, not the Riley Child Development Center. So I called the Sarkine Center, and asked the difference between the two. She said if we suspected Hayden was Asperger's (High Functioning Austistic), that he should go to Sarkine. So I transfered the info, dealt with more phone calls and a new form, and as of last Tuesday he's on a new 6 to 8 week waiting list to be called to even make an appointment three months later.

Then I went to the Autism Expo yesterday, and the awesome mom there confirmed my suspicions about the Center. I told her my frustrations with getting into Riley, and she said, "I'm not telling you what to do, but a lot of moms aren't too happy with them." I told her that I was worried by their website, that it mostly just talked about their research with new drugs. "Yeah, some of the stories I've heard..." She told me to sign up for a parent mentor through her organization, come to the monthly coffee talks to speak with other moms, and get started on the GFCF diet. She said to go to Riley for the diagnosis, then if I wanted I could get care elsewhere. [Later I met with someone from Easter Seals, who said if I emailed her she would give me a list of doctors who could diagnose Hayden sooner rather than later, so he could get the services he needs!!] She pointed out 2 of her 3 autistic kids-- they were relaxed, talking, mingling in the over-crowded convention room. They weren't having a meltdown from the overstimulation. She said they had always had all the typical autistic behaviors, and were now (years later) succeeding in school, with some people not even knowing they had the autism label. She said among other things, that the diet is really important.

Basically she gave me Hope, that things could work out for Hayden, and that things would be better for me. It was what I needed to hear. Now I just need a little Lavender with that Hope. Time for Mommy to take a bubble bath... The pile of information from the Autism Expo will still be there tomorrow! :)

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