Houston, We Have Chocolate!

Today was a pretty ordinary day, with a couple really cool things:

Michael drank chocolate 'milk'!!! This is a child who drinks nothing but water. No juice, no soda, no milk substitutes. He drinks water, and only water. Today, he had gotten chilly after a long bath, and I asked him if he wanted something warm to drink. He actually said yes, so we made up a cup of chocolate Dari Free. I added some cool water so it was warm but not hot. After a few minutes of coaxing, he agreed to try a sip. Then he wanted another sip. Pretty soon the whole glass was on his desk. He actually ended up drinking about half a cup worth. I was shocked. Of course, now I am worrying that it would feed yeast. But, it also provides calories he desperately needs. For now, I'm calling it a huge win!

He made it through a 3 store shopping trip with no meltdowns, no long interludes watching automatic doors, and no major fussing. We had to work around some of his weaknesses, but overall the trip was hugely successful. I'm still in shock that we went out and came back with what we intended to buy.

Otherwise a quiet day, and I appreciate that!

A wii Victory!

I never thought I'd be so excited over a video game! We've spent a lot of money in the last year on wii games hoping Michael would play them appropriately. Unfortunately, he spends most of his time fussing with the menus, and little time actually playing the game. Today, we introduced him to the Active Life Outdoor Challenge game. He actually played!! He spent well over an hour playing the Whack a Mole and Timber Trail games!!

Now, I know that even with kids on the spectrum, playing video games isn't all that big of a deal. But, if you remember my post a couple days ago, Michael has a LOT of body awareness issues. For him to see the mole, figure out where to stomp, and then stomp the mole before it disappears… it's HUGE!! And, he really likes the game, even though it's challenging for him.

The other game he likes is a timber trail game. You basically run in place and jump over logs that come rolling toward you. Sometimes he finds it more funny to crash into the log than jump over it. But, sometimes he actually wants to get a good score. He's never played a game 'to win' before. So, I'm just extra excited about that.

He's still nervous about new games, and covers his ears a lot at the music. But, I'm still so happy that he found two games to play. There are probably a dozen more that he's afraid to try, but we'll get there!

Friday, Fun and Games

Ever have a nice, quiet evening planned out, and then your child re-writes all yours plans? Normally, when Michael disrupts our plans, it's due to illness, a temper tantrum, overall clinginess, or general poor behavior. Tonight, I was planning on just staying home being quiet, knocking off a chunk of homework, and eating leftovers for dinner.

So, on the way home from school, Michael and I were talking about what he wanted to do when he got home. He's been on a Charlotte's Web kick, so I expected him to want to watch a movie and maybe read some books to the baby doll. He very clearly said, "I've had enough of movies. I NEED my Grandma." So much for my plans. Thankfully, Grandma lives close by and didn't have plans of her own.

So, Grandma came over and Michael has been playing pretty nicely. They read together, did some worksheets, and even played catch with his balance ball. Yes, the ball is as big as he is. Right now, they are swinging on the deck 'helping' Daddy grill some burgers for dinner. And, I get some quiet time to think, write, and reflect on how sometimes a change in plans is a wonderful thing.

Slow and Steady...

We've been taking Michael to the same chiropractic practice for just about 3 years now. When we first started, we had an unpredictable child with a lot of sensory issues and a doctor who was skeptical that chiropractic could help at all. We were unable to watch the orientation video because Michael couldn't tolerate the sound of the television. Waiting for our turn wasn't too much of a problem because Michael liked to stim on some of the toys. He didn't play with them appropriately, but he was entertained. The initial evaluation showed a tightness on both sides way at the top of Michael's neck. The doctor agreed that it was definitely something we could work on, and we started out with a neck adjustment on each side, twice a week.

As time passed, we dropped down to once a week, every two weeks, and now once a month. We've tried to extend longer between visits, but so far, every four weeks seems just right. The doctor is able to do a few more adjustments, and Michael happily climbs up on the table for his treatment.

It hasn't always been this easy. There have been many, many times where Michael got bored in the waiting room, threw temper tantrums, and/or just didn't want to be there. But, we kept up the chiropractic, along with all the other biomedical interventions we've been doing. For a long time, as soon as we saw any kind of improvement, we had a corresponding decline in behavior. There were times I expected to be asked quietly to come back another day. But, the doctor and the staff have embraced Michael as he is. They've rejoiced with us over every milestone, and gritted their teeth through the worst behavior.

Having a month at a time snapshot really gives the doctor a good idea of Michael's progress. He's seen a slow and steady improvement in his chiropractic symptoms, as well as a decrease in negative behaviors. Through it all, the doctor has always talked to Michael, asked him questions, and treated him with respect. Today, he was shocked when Michael actually answered a question or two. Today was also the first time that he asked for our DAN! doctor's name. I think we've made an impression!

A good day all around

Have you ever noticed that when your child has a good day, you have a good day? And when he's having a rough time, your whole day just seems to go downhill? Today was definitely a good day. We kept Michael home from school because he was scheduled to get an updated Auditory Processing and OT evaluation this morning. It was so nice to sleep in those few extra minutes and have an unhurried morning!

My husband took Michael to the exam, and I waited (not so) patiently by phone in case they needed my input for anything. The appt was scheduled for 10:00, and by 12:30 I was getting concerned. But, then the phone rang and I started to get a summary. Michael has made amazing progress in several areas: auditory figure/ground, dichotic listening, and even visual motor integration. It's a lot of technical words, and I'm not sure I understand it all, but one thing really stuck out: he had improved his handwriting by more than two years since the last eval one year ago!

Despite all this wonderful progress, Michael still has a long way to go. I've long suspected that he understands almost everything he hears, but it's so nice to have it confirmed! I've also been concerned that even though he does great with reading, he doesn't seem to understand math concepts as well. Spatial awareness and body control also seem to be weaknesses. We talked with the therapists for quite a while about all this and decided to change our focus from auditory comprehension to body awareness. This will mean a mini loop sometime before the end of the year, and trying to get in with a good OT.

I'm excited and overwhelmed at the same time: it's so nice to hear good news, and exciting to pursue a new path, but overwhelmingly difficult to get there. It's so hard to find an OT near us, and none of them take insurance. So, I'm committing us to even more expenses, paperwork, and scheduling. But, hopefully, the results will be worth it. Then, I look over at Michael, and see a happy kid playing appropriately with toys, and KNOW that he's worth any effort.

Small miracles, Huge Smiles

This weekend we saw a minor miracle at our house: Michael pulled all the books out of his school 'book bag', dragged his baby doll over to a chair, and read every book in the bag to the baby. This is amazing in so many ways – he NEVER reads out loud. Some of the worst battles we ever had were trying to get him to read out loud while doing his 'headphone homework' between Tomatis loops. He doesn't have a lot of pretend play, but he was actually propping the baby up so he could see the book, and asking the baby questions. It was so adorable. Plus, he was reading with inflection, and clearly had favorite stories.

I know that none of this is remarkable for typical kids his age. But for him, and us, it is huge. I was sad to back up the bag of books and send them back to school this morning. But, when I told his teacher what he had done, she assured me there would be another bag coming home soon. Never did I imagine I'd be excited about getting homework!

Thank you, Congressman Van Hollen

I'm not usually a political person - I'm registered independent, and I vote on issues rather than party lines. But, in the last few months, I've really been drawn into the issue of the vaccine-autism controversy. Like many parents, I watched my son slip away after a series of shots, culminating with the flu shot. I thought I had done my research, that mercury was out of all childhood vaccines. And, I listened to the advice of our pediatrician. Now, I know a lot more and my son hasn't had any shots since his diagnosis.

I was happy to see the announcement on Age of Autism that there would be a Congressional Briefing with updates and new information. I had naively assumed that my representatives would be eager to send staff to the briefing; that they wanted to know all the issues - not just the propaganda put out by big pharma. I sent an email to Congressman Van Hollen and Senators Cardin and Mikulski. The only response I got was a form letter from Senator Cardin saying that he supported the Combating Autism Act. Not quite what I had expected.

I decided that if emails weren't answered, that they would respond better to a phone call. I was pleasantly surprised when my first call, to Congressman Van Hollen's office, was received warmly with assurances that a staffer was already scheduled to attend. I was less impressed when my call to Senator Mikulski's office only responded by saying that a health staffer would 'try' to attend. But, at least I got an answer on my first call. It took me at least 4 calls to Senator Cardin's office before a scheduler finally called me back. She told me that a staffer would attend the briefing.

The day of the briefing I was hopeful that all my elected officials would be represented. When the list of attendees was published, I was disappointed to see that only Congressman Van Hollen had actually been represented at the briefing. Neither Senator had actually sent anyone, despite the phone calls and email.

So, I want to say thank you to Congressman Van Hollen for responding, and for getting both sides of the issue. I'd also like to thank Representative Maloney for hosting the briefing. Finally, I'd challenge Senators Cardin and Mikulski at least read the transcripts of the briefing.