Neuropsych Eval: 27 months later

Sitting down to write this post, my kids are running around in the next room and I am thinking it is going to take me several shifts to get out what I want to. This post is that important.

This is the post that I wanted to write in the summer of 2008. I wrote many letters to myself back then (that I've since lost when my old laptop burned out) I don't remember what the wording was, but it was essentially that Riley had made massive improvements and that we expected him to be in a mainstream kindergarten classroom.

Guess what? It happened.

The last time Riley was "formally" evaluated was January 29, 2009. It was about nine months after the initial visit to see Dr W... 5 months in to GFCFSF diet and biomedical treatment. About a month after we'd finished a 40 dive stint of hyperbaric oxygen therapy (HBOT)

So let's just say it frankly: it was bad, but it wasn't quite as bad as it was prior. Let's just say that he was 40 months old at the time, and his socialization score on the Vineland-II was at a range between 4 months and 8 months.

To bring it up to speed, here. Riley lost intensive therapy funding as of last week. His medicaid waiver based their criteria largely on self-help skills, safety concerns, and areas of development that we've seen massive gains in. I can't say it was a surprise, but yea... it was a surprise. Thinking back to that visit in my living room with our case worker, I can't believe the tidal wave of change that can come with one single set of paperwork.

We did attempt to have my husband's union add autism coverage to their yearly insurance updating. We even attended a meeting and wrote what they called "an eloquent letter." It fell on dead ears and within just a few days we received the letter in the mail telling us it was a no-go.

With all that in mind, and the likely hood of an appeal being unsuccessful, I decided to approach this already-scheduled neuropsych visit as a chance to get honest answers. It was nice not to need a report written in a way to "get" something. It was just written as it was. A big plus to seeing this Dr is that he doesn't know we've done biomedical treatment. He really is an objective evaluator.

I was nervous as hell for this evaluation, though. They are stressful, and awful, and I probably have more trauma attached to that man's face than I'd ever want to admit publicly. He is the guy who told me something extremely devastating and life changing, after all. And I was the mother who freaked out. I was the one who was so full of snot and tears you'd think someone had died. I was the one who didn't want to hear any of it, and didn't hear any of it for weeks... maybe a month.

Riley and I made it up to the third floor. It was hotter than hell in there. The doc came to get us and Riley said "Hi Dr W___." as we walked into the doorway down toward his office. I sat down in a chair near Riley, who was seated at a small child-sized table. Yep, that was the same table, alright.

He looked at me with that same, blank look I remember too well.

"So, what are we doing today?"

"Well, I'm hoping we can do an evaluation and see where Riley is at... how he's doing."

"Well, we've got the diagnosis of autism already. So..."

(Explain Medicaid situation, et al)

Very quickly, his demeanor changed from "oh, great, this woman is coming in here with some false assumption that her kid is better." to him sitting back in his chair, with a very surprised look on his face,

"Huh. I see why we're in this pickle."

He began doing the testing pretty much right away. My heart started to pound. I felt tingly in my ears. I felt anxiety roll over me. I thought I was going to have a panic attack.

So again I became the mother who freaks out. I asked to go to the bathroom, and he walked me down. Riley became confused and started following us. They actually did some of the first few exercises in the hall way. I went into the bathroom, where I chugged a little Rescue Remedy, splashed some water on my face, took a deep breath, and within 90 seconds was able to come back out.

This is okay. It's really okay. It's okay if he says he's doing better. It's okay. It's okay.

I knew as he was moving through the testing that he saw what I saw. Riley is a different kid through and through.

The doc and I ran through lots of ways to get funding. We ended up deciding on an honest report that just told us how Riley was functioning. I filled out two of the same assessments he had the last time. So, we had three different ways of looking at his neurological functioning. This gave a really clear picture.

There was more than a few moments at the appointment that made me chuckle to myself, though.

When I took Riley in January 2009, he told me that there were "two types of autism." One type would have a low IQ, not learn much of anything. The other, would make steady progress and would "look autistic even when getting their PhD."

Well, guess what, my friends? There are now three types of autism, according to this Dr. Yes, you heard me right. Three types. The third type?

"Kids like Riley, these rapid learners. They just set their own curve."

He also mentioned in the report that rapid learners were "most likely to normalize" with intensive therapy. News to me! No one told me my kid could "normalize," and I doubt he thought that was a real possibility.

So it leaves the question-- what has changed in his practice the last two years? I would be willing to bet a lot of people are trying, and having success, with biomedical.

I was nervous to get the report. It took about a week to come. When it finally came I sat in my living room and read it.

So much has changed. I try not to get too caught up on numbers, but on the PDBBI he was in the 60-70 range the first time (I don't have the paper in front of me) and now is at 44 for the autism composite. Most everything has decreased dramatically.

On the Vineland II he is right in the age range for everything... except, surprising to me, daily living skills, which he is about a year behind. Motor skills? Right where he's supposed to be. Everything else is around 80% or above. This was not the case previously. He was behind everywhere.

The best part of the report is the language that he used. Things like "impressive progress" and "rapid progress." It was just wonderful to read.

So, what do we do with this information?

We are not continuing out of pocket with our previous ABA/intensive therapy provider. We have not been happy there. Riley had tried a few in-clinic sessions, but they are so expensive for what they are. He really is so far beyond much of what they do with the other kids. We did apply for a few grants, and now we may be getting a little bit of therapy due to my complaint against one of our therapists. We'll see. We may do some in-clinic hours there if we are able to get them and not having to pay for them. I just don't think it's worthwhile for him otherwise.

What we've done is hired one of our past therapists under the table. She'll be coming 6 hours per week until school starts. Working mainly on social, communication, regulation. We also still have our respite provider, who works for the same therapy service. She'll still be coming 4 hours a week until school starts as well.

Tonight I took him to a social group that is lead by a speech therapist. It's relatively cheap so we'll be giving that a try for the next few weeks. It's a long drive, and it falls right over our dinner time... but if it helps, it is worth it. That would be 1 hour a week. Very interesting to add to this... one of Riley's old OT's works there now. He was our itinerant OT through the school district. Riley doesn't receive OT anymore, of course, and this guy hadn't seen him in two years. It was really nice to see him, and show him how well Riley is doing.

Riley also was tested after his IEP and will indeed receive speech at school next year. This is really great news. I also am confident he'll do really well in general. His IEP is great and thanks to a visit, the IEP and just recently the Kindergarten visitation day, I am feeling like I have the respect from the principal and teacher that is needed to have a good communication. I feel like if he's not getting something next year, they will help me get it for him.

Last week was our first week without "official" therapy and I have to say, a weight was lifted in many ways. We are moving on to another phase and I cannot be mad about that. It is what it is.

It has made me think a lot about his healing, though. A lot of people have asked me, as I've shared the news of his great progress, what we've done. It's a long list of course, and I never know what to say "did it."

The truth is no one thing did it. His body healed. Healing is not something that happens quickly. We are so used to an immediate fix with medication, etc. True healing is not like that. True healing takes time. There is no pill you can take to make a cut heal, a bruise heal. There is no pill that makes autism heal.

What I can tell you, though, is that gut healing was first and foremost the biggest thing for Riley. Staying the course with the diet helped tremendously. Second to that, treating dysbiosis (Enhansa was the best thing we did, by far, for this) I believe what happened is that the gut healing lead to reduced inflammation and better nutrient absorption, which lead to his cells working well. I believe it was a cumulative effect. Many many things peeled back the layers upon layers of inflammation until suddenly, what seemed like overnight, he was a different kid.

It absolutely wasn't overnight, though. It has been a long 35 months since the initial neuropsych visit, and 33 months on the diet, 32 months on biomedical. We have lived a lot of life in that time. It became part of our life, really.

Part of healing is also who you choose to have in your life to help you. Very early on I was careful about who I kept around, weeding out non-supporters. In doing that, we truly had a huge support network of family and friends. I am at the point now where I don't even associate with people who don't believe in what we are doing for him.

That, I think, has been important. My parents. My friends. Respite. Autism friends. Non-autism friends. Extended family who couldn't do much more than send a check, but had NO IDEA how badly we needed those checks! It was just so important and amazing. We are truly blessed. As much as I can complain about how people don't give a shit about autism, people gave a shit! And continue to.

I know my time is waning down and I should figure out how to end this post. It has been such a rollercoaster the last 6 weeks but a lot has come out of it. For anyone who is just starting this journey, or is in a place of frustration, sadness, anger... keep the faith. I've been there. I have all of those feelings, too, and will probably continue to. As parents we have our own healing to do. The trauma is like combat (really, there was a UW study that proved this) and we have to be gentle with ourselves.

Also, last but not least, we have to be gentle with our partners. Chad has been an amazing supporter in all of this. He may not be up at nearly 10 pm writing a blog post, or carting to and from appointments, or going to school stuff. But he's here, he is present. He's working hard for his family. He understands that I won't ever be satisfied... I want the very best for all three of our sons.

Ah. So, I can finally say I typed "the" post. Here it is. It's beautiful, ain't it?

Sometimes I have to read back on this blog (or elsewhere) to help jog my memory of the last three years. It's all such a blur.

What do I remember about three years ago that isn't yet on this blog?

I was riding in the car with a friend of mine, on the way home from a small get together at a friend's house. I remember vaguely her talking about taking Riley to the neuropsych we saw for the initial diagnosis (May 2008) I don't remember if the word autism was used at that point. I remember this was also the friend who had told me to watch the videos made by “Silent Mia” http://www.youtube.com/watch?v=JnylM1hI2jc and realizing that my son did those same hand motions. At the time I didn't know what hand flapping was.

I'm fairly certain this friend knew something more was up with Riley and was gently trying to tell me. I'm so grateful she was gentle, and even more grateful she told me.

I can honestly say that after working in special ed for 2 years, after being a nanny for a boy with autism, having a mother who has worked in special ed for 18 years... I don't think I had a clue what autism was then.

I knew my child was different, that's for sure. Almost four years ago, my mom was the first person to bring up the sensory issue as being a, well... issue. After asking some friends online what I should do, I made the appointment with Birth to Three in August of 2007. The first visit was in October. I remember thinking I must be looking for a label, fishing for a diagnosis. There's no way anything was “wrong” with my kid. In fact I remember a response on the messageboard I posted on left me feeling that way. But when I went online and did the sensory inventories, he definitely had differences. Still, when they did the evaluation and said there would be no question he'd qualify, my heart sank a bit. This was a system I didn't want to go into.

Looking back, autism hit full on right around that time. That's when I remember playdates being hell. Chasing him around. He was fixated on ceiling fans and light switches. He didn't know how to play with toys. He was exhausting. I was exhausted, too, because I had a very young baby (my middle son, Jack, who is now turning 4 in June)

I think that's when flapping started, too. He used to do this dance that was very similar to “FlashDance.”

That is the time that makes me saddest. The time from when that started until we started treating his autism. It was a very hard time for me as a mom. Stressful, but also full of self blame. I was certain that I was doing something wrong to make him act this way.

I had no idea that he was behind with social communication. It was also a few months into OT with Birth to Three before I noticed that he wasn't really playing with his toys, and they started some suggestions with play. It wasn't too long before we had an early childhood teacher added to the team. I think this was prior to diagnosis.

Once Jack hit the age that Riley was around diagnosis, it became very clear what we'd missed out on with Riley. Now we have a third son, who is neurotypical thus far at nearly 17 months. We are definitely already seeing him do things Riley never did. (Example, he “feeds” a baby, he likes to play with Little People, he sings songs, etc)

Where am I going with this?

My beautiful baby boy was lost in there for a while. Now that we are getting further away from it, I see how bad it really was. I am glad we intervened when we did. Although I am upset at the latest things that have gone on with therapy funding, etc I am reminding myself that he is worlds different now from when I started this blog.

I had a conversation on the phone with Riley tonight. He's staying at grandma's for a night. We chatted about what they were doing, about what he was eating for a snack. I think back to when phones upset him, he didn't understand what they were and he hated the way they sounded. And of course a time when he would have never been able to carry on that conversation.

He's just come so far. I'm so amazed by him every single day.