DAN! appointment

We had our first DAN! appointment yesterday. It was much more pleasant than I expected. Sam's behavior was horrible, of course. He threw things around the office, ran around and climbed the furniture. The doctor, though, was very mellow. I almost went to another DAN practitioner back in the fall but my quack radar went off when she told me she would sell me lots of supplements before we got any test results. Also, she charged $500 for the first appointment and she isn't even a doctor! I cancelled the appointment with her. I heard about the woman we did go see from another family and they felt very at ease with her. She didn't try to sell me anything, she didn't insist we immediately go back to gf/cf or anything like that - she is going to wait for test results before making recommendations. We just paid for the office visit and we will have to pay for labwork -EXPENSIVE!!! I am not going to harp on all the prices though. I made up my mind before we went to the appointment that we were just going to go for it. Sam will be 4 in a little over a week and I feel like our window is closing. I am hoping for major gains before he turns 5.

Wondering When the World Changed

Some parents of autistic children seem so sure of the moment their child "became" Autistic. It was right after the MMR or the DTaP or a fever or seizure. . . They KNOW that nothing was the same after that incident. I have no such moment I can pinpoint. In recent months I had convinced myself that I could have detected his autism much sooner, possibly as early as 1 year old. Maya's incredibly social personality is such a contrast to what Sam's "mommy only" attitude was at her age. Her behavior had me convinced that something could have been detected sooner.

Earlier this afternoon I came across some photos of Sam when he was younger and all of these memories of the way he used to be came back to me. The first is a photo of Sam in his exersaucer as happy as can be. I remember when he used to play in it while I cooked and/or cleaned up in the kitchen. He would babble and bang around just happy to hang out with me.

The second is a photo of Sam in the cutest Hanna Anderson pajamas. He is probably 14 or 15 months in the picture. It made me remember the dancing game we would play in the kitchen when he was too big for the exersaucer. I would say "Sammy dance" and he would "dance" by running/hopping in place. Then he would stop and look at me. I would follow with "Mommy dance" and do a similar jig myself while he giggled. We would go back a forth a few times while pasta sauce or chicken simmered on the stove.

A third photo is one we used for Christmas cards whan Sam was about 19 months old. Sam is in his fleece one piece pajamas and sitting on a chair in the family room. He is beaming at the camera with one of the happiest grins you can imagine.

The final photo that prompted this reflection is a picture of Sam sitting on the stairs in khaki pants and a striking blue polo shirt. It was the day of our neighbor's son's first communion. Sam got right on the dance floor and bopped up and down nervously when we arrived at the party. In the picture he is looking right and the camera and smiling.

Looking at each of these photos I was suddenly hit but this feeling that he seemed so NORMAL at those times. He was not withdrawn, stimmy, or hyperactive at those times. While he may have shown signs of autism early on - not much pointing, difficulty waving/motor planning/imitation, running back and forth when he learned to run, slow verbal skills - he also did things to negate our concerns - sit on my lap for stories, snuggle, smile at other children, make his wants and needs known through nonverbal communication.

After 2 the signs became more apparent. I remember watching in horror as he lined up puzzle pieces in perfect arches across the carpet and tearing up as he stopped letting me read to him. As Sam grew from 2 to 3 his condition got worse. He started hand flapping, jumping, humming, bouncing on his bed for hours at night, losing the few words he had, chewing paper, and throwing everything in sight.

Looking at these pictures made me sad missing the little boy I thought I had but it also made me realize that I wasn't negligent missing his diagnosis in those first two years. There was so much he did that seemed "typical".

So when did the world change? I just don't know.

tomatis listening therapy

We are trying a new therapy called the Tomatis Listening Program. We are using the lovely people at Bergen Pediatric Therapy in Westwood, NJ. They are fantastic - I recommend them to anyone looking for a sensory integration approach to OT. Sam completed the first loop (15 days@ 1 1/2 hours a day). I haven't seen any gains in language so far although I my husband I and I both think we have seen him be more affectionate with my husband. I hope that with the second and third loops we see more gains. It is so hard to know what hterapies to try. Everything cost so much money and each one is a gamble.

In a few weeks we are going to see a "holistic" doctor who also know the DAN! (Defeat Autism Now) approach. DAN! is very controversial but I feel like we have to try eveything.

At the moment Sam attends an ABA based school for autistic students, gets Spectrum COmplete (a multivitamin.mineral supplement from Kirkman Labs), DHA/fish oil, and we just started a high strength pro-biotic (Three-Lac). We also do one private OT session a week.

Maya, our second child, is 11 months now at she is right on target with her development - such a relief. She makes great eye contact, responds to her name, points at things she is interested in, babbles, dances, crawls, pulls up and eveything else an 11 month old should do.

What are we doing differently? I refused the flu shot when I was pregnant. It contains mercury and if getting the flu during certain critical periods of pregnancy is a risk factor for the child developing schizophrenia (which has been found in studies), why PUT flu in my body on purpose? In addition, we are using a alternative vaccine schedule. She gets no more than one shot at a time and we are putting off any vaccines for diseases she won't be exposed to as a baby. She will get them but when she is older. We believe vaccines are important as a public health factor but after learning about what they contain, I can't see ever injecting a tiny baby with ALL of them. I recommend The Vaccine Book by Dr. Sears for anyone who wants to know what each brand of vaccine contains.

Quitting GF/CF Diet

Well, we gave it a shot. Sam was gf/cf for 3 months and I didn't see the changes I had read so much about. Sam got dairy back last week and gluten this past weekend. His tantrums are terrible on or off the diet. I am sad it didn't help because it is something I could control but it is much cheaper to be off it.

Adoption

You might notice that the "Blogs I Read" are adoption blogs.

I have known since I was a teenager that I wanted to adopt some day. After I had my son Sam, I was so madly in love with him, my desire to adopt grew stronger. I couldn't stop thinking about how all children should have a parent who loves them this much. My niece was adopted from China and the man who helped facilitate her adoption went to work for Gladney so my brother-in-law told me to check out that agency. I researched the agency was drawn to their Ethiopia program. My husband and I agreed it was something we would pursue when we had the money. Through the Gladney site, I found some fantastic blogs.

Then Sam developed Autism and everything changed. He requires almost all of our energy and money and we are just hoping we can do enough to give him the best chance possible at a normal life. We have a six month old daughter who is so far very typical so we are crossing our fingers. . .

So adoption is on hold, probably for quite a while.

BUT I just found a great way to do something for an Ethiopian orphan. We joined an online community being coordinated here - www.bottomlysandethiopia.blogspot.com
As an online community we are sponsoring an orphanage - Kebebtsehay Children's Home

The group setting up the sponsorship is Children's Hope Chest - www.hopechest.org

I am thrilled to be able to participate.

A New School Year/ GFCF diet

School is in full swing now for Sam and for me. I have a great groups of juniors this year and Sam is very happy to be back at his pre-school program.

We had a TERRIBLE summer. Sam seemed to develop some behavior problems when he first started school - throwing, yelling, jumping on furniture - but when school ended for the summer, he just went crazy. He was constantly wired and trying to take care of him and the newborn baby left me in tears most days. I just couldn't see any hope. Sam was so out of control I couldn't take him to other people's homes. In addition, Sam stopped sleeping properly. There was one night towards the end of the summer when he bounced on his bed and screamed (for fun) pretty much ALL night. His receptive language skills were so low that I couldn't tell him things like "it is time to sleep" or "stay quiet while the baby is sleeping".

I am SO relieved to be back in the swing of a school year. Sam does so much better when he has a structured day.

I also put Sam on the gluten free casein free diet. I resisted for so long because I thought it would be too hard and I wasn't convinced it could really make a difference. Why did I change my mind? I kept meeting people who said they felt it helped. I started noticing gluten free foods at the grocery store. I started slowly by getting him interested in Van's Waffles and substituting rice pasta for his regular stuff. ABout 3 weeks ago, I committed to it completely.

Do I see a difference? I think so. Sam has always had a crusty weepy rash behind his ears. I was comstantly treating it with creams. It has almost completely vanished. Was it a food reaction? Sam's spacial planning and climbing ability reall jumped about a week into the diet. Has the brain fog lifted? He is also sleeping better but that was starting to improve the deeper into the school year

PECS - Hurray for Sam!

For those of you who don't know, PECS is a picture exchange communication system. Sam has a book filled with little laminated pictures of things he can request - cookie, chips, video, juice, etc. When he wants something he must give the adult the picture of the item he wants. He is still in the early phases of learning this communication method so basically when he wants something he just gives us any picture and then he tries to tell us what he wants or we figure it out somehow. Today he figured out which picture card represents "cookie"!!!! He sure had fun giving us that one. We are supposed to reward him quickly so that it motivates him to use the system so this boy had quite a few cookies!!! Sam actually already knows haw to ask for a cookie verbally but now there are many things he wants that he can't articulate clearly yet. Now that he "get" PECS, hopefully it will allow him to use it for things he can't say yet. I have always wanted to believe that my boy was very bright but he was hiding inside this PDD shell. Seeing him learn this so fast was fantastic.

I was reluctant for Sam to learn PECS at first because I thought it meant we were giving up on verbal language. I didn't want him using his speech therapy time at school doing PECS instead of talking but the idea is that is will facilitate language. FIrst you build communication skills and then use that interaction to build language. I see it working a little already as he is whining less and trying to use pictures and words. When he brings me a picture I make sure to say the words very clearly and he tried to repeat it. He can now sometimes say "juice" instead of "nn-ga" when he wants a drink.