Final Diagnosis & Peter Progress Issue 1

So we got our diagnosis and it was what we expected. Autism. The appointment was actually pretty uneventful. She mainly just observed Peter for a bit, took some notes, and went over all the test results. Then she gave us some information on what to do next, gave us some referrals for therapits and doctors, and ordered an EEG (more on that later).

Here are the results of the tests: For Receptive Language (i.e. how much he understands) he is at a 10 month old level. So he understands less than Ian. For Expressive Communication (i.e. how well he communicates) he is at a 17 month old level. I was pretty pleased with where he was at expressively (although obviously I would like it to be higher) but was shocked to see how low he scored for receptive language. For Visual Reception (not exactly sure what this is) he scored at a 14 month old level and for fine motor at a 13 month old level.

The doctor recommended a whole bunch of things (speech therapy, occupational therapy, physical therapy, a nutritionist, and an EEG (to check for seizures because I mentioned he had staring spells)).

I wasn't too happy with her though because she seemed to have a very low opinion of alternative therapies (even though she knew hardly anything about them). I have done a lot of research and believe that many of them show promise (and some kids who have done them have completely recovered). So we will be pursueing some other things besides those which she prescribed (will talk more about them later).

Surprisingly we both felt pretty good after the appointment. We both felt a sense of peace about it all. It is a bit of a relief so finally have a diagnosis even though the hardest part is yet to come. I've had my moments today where I've been sad or mad but mostly I've been ok. I'm just sad that autism took this last year from me and I'm sure will cast its shadow on many more years. I don't want to be thinking of this right now, I want to just be enjoying my kids. I'm mad that insurance covers hardly anything. I feel like they don't take it seriously. This is a life changing diagnosis. Many of these kids will never be able to live on their own. But there are many promising therapies and treatments being done that have allowed some kids to recover. But they won't cover it because it is "experimental" (even though many of them have been around for decades) or are too expensive. I guess I just don't understand why parents of autistic kids are still having to fight to get services for their children. Autism is not new. It has been around for at least 70 years. When are they going to wake up. Ok, I think I got that out.

Many have asked what they can do for us. Here are some things I thought of that will help us:

1. If you see an article or website about autism that you think we might be interested in please let us know or make a copy.

2. Just listen. Many have said they don't know what to say and that's ok. I wouldn't know what to say either if the situation was reversed. But just having someone who is willing to listen when I've had a hard day is so helpful.

3. Encourage us. If you see that Peter seems to have had a good day tell us. Many times we tend to focus on the negatives and we many need others to remind us that there is hope.

4. Pray. This is the most important thing. So many have been praying for us already and we are so grateful! Thank you so much. There are some specific things you can pray for now that we have the diagnosis.

• Pray that Peter would recover from the autism (I know this is possible, God can do anything. He can do it now or choose to wait till after he has had years of therapy. Either way I know this is possible. Will it happen I don't know but please pray with us that we would get our boy back.)
• Pray that we can get the therapy Peter needs (there are some issues with availability and funding)
• Pray for Gods direction as we try to figure out the best way we can help Peter.

5. Be understanding. This is an incredibly stressful time. And as we work out the logistics of treatments, doctor appointments, therapies we may forget some things. I may not call as often. It's not that I am shutting people out. We are just overwhelmed and a little more forgetful now that we have so much going on.

I'm sure there are other things but those were the ones that came to mind. I know a lot of people don't really know what autism is. I plan on writing a post soon about that.

I also plan on sending out progress reports on Peter. I'm not able to call everyone so this will be a good way of keeping family and friends up to date. I'll call them Peter Progress. =) Here is Issue 1.

Peter has already made such huge leaps and bounds from where he was a year ago. Although he is still severely delayed, he is definitely ahead of where he was.

A year ago he attention span was extremely short. He would only attend to something for a few seconds. We could not read to him. Now he will pay attention for a good couple minutes or more and likes it sometimes when I read to him. He also used to just flit from thing to thing. Now he will play with a toy for while before moving on.

A year ago he had 0 words. Now he has about 25 (cracker, cookie, cup, bite bite, night night, bye bye, hello, uh-oh, more, ready-set-go, tickle, ok, Amen ) He has even used words a few times to tell me he wants something. A year ago he was not imitating words at all. He would never repeat a word back to me. Now he does it all the time.

A year ago he would not respond to his name. Now he responds more often than not but it still needs improvement.

A year ago he would not walk in the grass and when you put him in it he would cry and scream. Now he loves to run through the grass and touch it.

He claps now. He could never do that before. And he sings all the time and knows all the words to about 15 songs. A year ago he wasn't singing at all.

He plays with toys more appropriately. A year ago he was just spinning the wheels on cars instead of pushing them, repeatedly (and I mean for almost an hour) pushing buttons on toys, staring at flashing lights. Now he does much less of that. Today he actually tried to do the stacking cups. A first for him.

His eating has improved. Before he would stuff his mouth completely full of food instead of just taking one bite. He doesn't do that anymore at all. He also would not chew his food. We are still working on that one but he has definitely improved.

He can now count to 10 and knows the ABC song.

He takes my hand and leads me to what he wants sometimes. This is huge! It is requesting sometimes, communicating, which he wasn't doing a year ago.

And now here are some things we are trying to do to help Peter:

1. Get physcial, occupational, and speech therapy.

2. Get him an EEG

3. See a nutritionist (he is a VERY picky eater and we want to make sure he is getting what he needs).

4. Set up a meeting at Cincinnati Childrens to develop a comprehensive treatment plan.

5. Schedule blood tests for genetic testing (kariotype (to make sure there are no chromosomal issues) and testing for Fragile X Syndrome (which has many symptoms similar to autism)).

6. Attend some classes at Cincinnati Childrens Hospital on how to get started once you have the diagnosis.

7. Try to get him ABA and Floortime therapies. These are the therapies that have worked wonders with so many kids but insurance won't pay for them. I would like to get him 35-40 hrs a week of therapy. I realize that sounds excessive but it has been shown that the earlier and harder you treat autism, the better these kids do. We're probably talking about a price tag of about $40,000 a year.

8. Apply for a MA Card.

9. Join an autism support group.

10. Make an appointment with a DAN (Defeat Autism Now) doctor. They basically are willing to try alternative treatments.

11. Start Peter on a GFCF diet (gluten free and casein free). Bascially he would be able to eat no dairy (not even butter) and no wheat. Many children have responded wonderfully to this diet and have increased their language, attention spans, ect....

Whew! I'm exhausted just looking at this list. My actual list is over twice this long but these are the important things. I'll be glad when we get all of this set up and figure out the logistics of everything.

Which brings me to the most important thing. We are strongly considering moving. They have VERY little services around here until kids reach kindergarden. But studies have proved over and over again that the best time to treat autism is before kids turn 5.

So we are trying to move to a place that has more resources and better funding. I know I said that insurance won't cover some of the therapies, well that actually varies by state and there are some that will pay almost the entire bill (IN, OH, and PA). So Micah has been looking for jobs in Cincinnati (we could get a $20,000 a year scholarship), Indianapolis (this state will pay up to $50,000 a year for treatment even for ABA), and Pittsburgh (will pay up to $36,000 for treatment).

Although I am excited that Peter would be able to get what he needs I am not really happy about this. A move is a big thing. We were just getting settled here. We would have to move away from family. It is a big decision but one we are prepared to make if it will get Peter what he needs. Please pray that God would lead us where he wants us to go.