Monday, November 24, 2008

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

Saturday, July 26, 2008

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.

Thursday, July 24, 2008

Timeline

Sam was a healthy 8lb 3oz boy at birth. He met his developmental milestones during his first year - he smiled, he laughed, he babbled, he played peekaboo. . .

At 1, he wasn't really using words. He babbled often and he would repeat things we asked him to say but he didn't really use meaniful language. We weren't too worried because he was happy, well-attached to his mommy, and meeting his physical milestones.
Hindsight - Sam tended to fixate on one toy at a time. For a while, it was the plastic ring stack toy. At one point, it was the peekablocks train which he eventually broke by using it so much. I though all kids had favorite toys so I didn't worry about it.

At 15 months the pediatrician recommended an evaluation because he still wasn't talking. SHe said she wasn't concerned about autism because he seemed to only have a speech delay. I resisted. Everyone around me said boys are late talkers so why go to the trouble of an evaluation . All this stuff in the news about the rising rates of autism must be due to over-diagnosis, RIGHT??? I can't tell you how many times people told me Einstein didn't talk until he was at least 4.
Hindsight - Sam had a habit of doing what we jokingly termed the "hop-hop-headbop" once he started walking just after his first birthday. He would stomp/hop a few steps across the room and then bob his head. He would entertain himself with this "game". We though he was just excited to be up and moving. The repetitive nature of it should have been a clue. He wasn't really interested in toys. He wasn't pointing with one finger.

At 18 months, he was still only repeating words when we pushed him. He didn't seem that different from other kids his age. he sometime cried when we first arrived at a new house but it was always a brief reaction. He still lacked language but he babbled a lot and pretended to "read". He used inflection and sounded natural so we though language was just around the corner. He loved being read to and one of the few words he said was "read?"
Hindsight - Sam still wasn't pointing and or using language. He didn't have good play skills and basically ignored his toys. He would sit and flip through books on his own but since he also like being read to we didn't think that was bad. Other than that though he seemed very typical at this age. No one around us voiced any concern.

At 2, in the spring of 2007, Sam was still barely talking and I knew it was time to think about evaluating him. WHen he was outside in the yard or at a park he would play normally for a few minutes and then run/walk back and forth along the fence. At my parents house he would run up and down the hallway looking at the banister. He began lining up puzzle pieces in a perfect arch. He stopped letting us read to him. He would flip through books on his own and get annoyed if we tried to intrude. His eye contact began to slip away.

In July 2007 he had his EI evaluation. He qualified for early intervention due to greater than 25% delays in all areas (receptive language, expressive language, social skills and self care). THey suggested a follow up with a developmental pediatrician but they said that they didn't need a diagnosis in order to give him services, they would treat symptomatically. I figured why label him? BIG MISTAKE!! If I had gotten that diagnosis I would have gotten more services. I waited unitl Sam was about 2 1/2 to get an official diagnosis. In December, Sam was diagnosed with PDD.

At 3, a couple of months ago, Sam entered a full day public school program for disabled preschoolers. He is making progress but it is slow going.

On the positive side
-He makes pretty good eye contact
-lots of smiles
-a few single word requests
-he is learning PECS

On the negative side
-hand flapping
-shrieks and yells
-frustration when he can't communicate what he wants
-doesn't understand "play" so he throws whatever he can get his hands on