educating Sandy

I've been sitting on this post for a long time, unsure of how to relay the tumult that we have been through the past two months. Or if I should even relay it.

I left off the last post with two calls out, one to a child psychologist and the other to the early intervention program in our county. I am so glad that I made those two calls. While it may not be fair to compare M to C and K at the same age, I am so glad that I pulled out those old tapes that day. While I thought I was only seeing a learning delay, it quite possibly was more.

Our visit to the child psychologist was eye opening. Both Kevin and I took M and were hoping to gain some insight into what the root of some of M's behaviors were. She was withdrawn. Her eye contact was spotty. She rarely responded when we called her name. She wouldn't engage with us when we spent time on the floor with her trying to teach her how to play with her toys. She wasn't talking, and had stopped babbling. She didn't point. And she still hadn't learned to wave bye-bye, after 6 months. She hadn't learned to copy us doing anything. Was it attachment? Effects of institutionalization? The psychologist shot straight from the hip at us. She thought M was showing signs of autism. We were shocked. In denial. We frantically searched for some other reason. Perhaps institutional autism? With some attachment issues? When I finally had the courage I got on the internet and started searching. Reality started to sink in as I recognized that some of M's quirks matched with the symptoms described in autistic children. After a couple days of blackness, I realized that I would need more time for acceptance but that I would also need to act quickly.

So we did.

The early intervention program sent someone out to assess M that had a Ph.D. in Psychology and ran an ABA program here in the area. While it was hard seeing how low M scored on the assessment, I was glad because it confirmed my worries when I made that first call. As a result, M initially qualified for 100 hours per month of intensive behavioral therapy. We started her out at 50, or 10 hours per week. The program started after Easter and we are in our 5th week now. M has a team of 4 people, plus our EI case manager. She has at least one two hour session every day with an interventionist whose job it is to teach her how to learn through repetition and positive reinforcement. The first two weeks were hell. She cried through each session in anger and despair. Finally toward the end of the second week she started to settle and by the end of the third week she didn't cry at all. Already we have seen improvement in her eye contact and responsiveness to her name. Even in the first two traumatic weeks we saw her come out of her sessions with more interest in her toys than we had ever seen.

We started M on a GFCF (gluten-free casein-free) diet by removing all dairy, gluten and finally soy. We saw good improvement in her responsiveness when first removing the dairy, and her big tummy flattened out. Not much of a difference with gluten removed, but again we believe she's been more interactive with the recent removal of soy. It's subjective. Our next step is to double her hours of ABA treatment so that she is receiving the 100 hours per week, which is around 2 2-hour sessions daily. We also have an appointment with a biomedical physician next month who will evaluate her health and determine if she has any problems with vitamin deficiencies or heavy metal poisoning.

M has no official diagnosis of autism. We have just been fortunate that our early intervention program recognized her delays and decided to treat her symptoms with ABA therapy. We don't know the real cause of her delays. It could be genetic or environmental. Certainly spending the first 11 months of her life in an orphanage didn't help and it very well could be a form of institutional autism, where the symptoms slowly fade over time. We also don't know the effects of the vaccinations she received in Russia, nor possibly the ones she received since she arrived home with us. We did delay her 18-month vaccinations until after she reaches the age of two. But whatever this is, we are aggressively treating it in as many educated ways as we know how. She is very young, and studies statistically show that many hours of intensive ABA therapy produce the best results for children with these symptoms. Our ABA team was encouraging when their goal from the start was to have M mainstreamed into preschool by the time she turned 3. I think her progress just in the past two weeks has us thinking that this could be reality. I certainly hope so.

My reluctance to blog about this stemmed originally from my own uneducated perception of autism. From the first moment we heard that word our lives and our future swirled around us like we'd been flushed down the toilet. We felt despair and isolation. Honestly, my attachment to M took a big hit because I didn't know if I would ever really KNOW this little girl that I had hoped to raise. Finally I realized that God has given us this little girl for a purpose... why otherwise did we see the miracles that took place to pull our dossier together and bring us to Russia successfully three times last summer. In all my skepticism I cannot deny that M was meant to be with us. In my darkest hours during the past two months, M has given me glimmers of hope, like when she started babbling back to me 7 weeks ago. When she started pushing her activity walker around last month. Yesterday when she quickly turned around and looked at me smiling when I called her name.

In a way I feel like I'm still waiting to meet her. Waiting for her to come out. Every milestone now is sweetly savored. I take great joy in her accomplishments. Today she ran while pushing her baby stroller from room to room. She is babbling now with intonation... there are thoughts behind those sounds! I swear that when she starts talking I hope she never stops.

We have a long way to go, but I am thankful for each little bit of progress. I hope that sharing our journey with M and some of what it entails will help and encourage others. My own hope grows because of others who have shared their stories with me.