This morning, as I'm editing posts, he is bringing me all his stuffed animals one by one. We have really been focusing on pretend play recently in Speech and working with his stuffed animals. We play doctor, we pretend to feed them, we pretend they are talking to each other and walking around the room. Dad taught him to have them look each other in the eye so he could learn that they are actually talking to each other & that he should look at someone when he talks to them as well. Well, he runs off..... and comes back up to the gate here at the computer room with 2 animals. They are faced towards each other and he gives me this look of 'Mom...what was it I was supposed to do with these again?'. So, I play along... having each animal greet the other for the morning. He is SO satisfied with that and runs off to gather a new set of animals for me to greet. :-)
JULY The DT group was ok... but I really didnt find anything about it that was beneficial to us. The ladies were always nice to us, but never really sat down to talk about any individual needs that he might have. I spoke with our Service Coordinator and discussed that if anything was theraputic to him, it was invisible, so we decided to stop going to that group. We are set to start an individual DT in early August. SLP is going very well. We have had 6 sessions so far and we have had some great progress. We have learned to give him ample time to complete thinking about what the question was before he answers. He is pretty good at answering Yes/No questions now, and is speeding up his response time. The most amazing breakthrough of THIS week (7.28.08) is that he started responding to familiar questions WITHOUT the echo. 'Do you want to go outside?' 'Yes.' Scripting is when a child with autism memorizes tv shows, tag lines, songs, etc.. and repeats them at various inappropriate times. But it is also called scripting when they learn to respond to questions. They learn 'scripts' as their answers. Yes & No are scripts. More & All Done are scripts. For example when he is asked if he wants to eat, he can learn that it is a Yes/No question. But it takes a while longer for them to learn what the appropriate response should be. You can tell that it is a script that he is choosing from because there are many times you ask him a question like 'Are you ready to go Night-Night?' and he says 'Night-Night... Yes' and then sees our face and changes his answer to 'No.' Well, the most amazing thing is that he uses scripting in his play as well. I didn't know that was possible. The reason he will take a car and push it back and forth in front of him is because he has seen us do that. So, the more we play with him in imaginitive ways the more he will build his scripts. The more he builds his scripts... the more he will finally make the connect that hedoesn't have to do it just like we did - or at least that is the hope.
Developmental Therapy - DT We had our first DT group on June 24. It is supposed to last for about an hour, and upon arriving, I really wasn't too sure what DT was supposed to even do for my child. We walked into a building, much smaller than expected, and saw a handful of other parents with their 2 & 3 year olds. Everyone took off their shoes as we entered the 'ball room'. They use the ball room to get all the wiggles out and also to work on transitioning from one room to the next. Once we were done in the ball room (we just threw around balls and talked about sharing), we transitioned into the therapy room. In the therapy room there is a painting easel, a small shelf of toys, and a water box. They let the kids free play, then sat everyone down for a story, played in the water some, and then we were done. Both of the therapists were nice, but no-one showed any interest in what my son's specific needs were. I was also a bit disturbed with one of the therapists holding down one child during the story asking him 'What did you have for breakfast, whats wrong with you, why are you so fidgety'. I wasn't too pleased with our first therapy session, but I decided to give it another chance. As it was, I had just begun and didn't really know what to expect anyway. Speech-Language Pathology - SLP We had our first SLP therapy on June 25. SLP is done at our home. The therapist came right in and started playing with him. She asked some questions as she went to find out what he specifically needed to work on. In the past, when we would ask him questions; eg. What do you want to drink? Juice or Milk?; he would say 'Juice, Milk'. She explained that this is called Echolalia. He echos each question that we ask of him so that he can process it. She noticed this first thing and worked with him on choices. She had a little bag of trains and as she would pull them out, she would say 'Green Train or Blue Train?' His answer... 'Green Train, Blue Train' . I wasn't surprised. So the therapist said... wait... watch this... as she gave him just a few extra seconds to answer the question.... he said 'Green Train, Blue Train................Green Train.' BREAKTHROUGH!!! He made a choice!!! What!! He has a choice!!! I had never seen him do that before. I had no idea that he really understood that we were asking him a question let alone which one he wanted. Needless to say, the first SLP went very well. Occupational Therapy - OT OT's are harder to find. We have not yet started OT, but the service coordinator is working hard to find one for us.
June began with his diagnosis. Things got worse for us (his parents) for about a week or so... We thought that the knowledge would bring relief, but we dealt with it so differently that we didn't talk about it much. It hurt dad really bad....he thought about the things he thought his son would never do, he mourned over something being 'wrong' with his child and then he finally came around to realize that for our son, its really not that bad. He's mild. He's super-smart. He's verbal. Our pediatrician said that it almost looks like a switch turns on and off & I do agree to some extent. However, being the primary person who is with him 24/7... I tend to see the situations that really send him into that fragile state of frustration. I think of it less as a switch, and more as 'triggers'. I dealt with it by reading, scouring the internet, scouring the library, talking, telling a very few choice people, and of course prayer. I'll admit, part of me was relieved to not feel so CRAZY anymore. I felt like I was analyzing every thing he did before the diagnosis. I felt like that if I would admit we needed the evaluation and then they said 'Nope... there's nothing wrong... he's normal as normal can be' then I would be that crazy mom who just thinks her son has everything plastered on the news. Well, thats about as far from the truth as you can get. Everyone was super-nice. I was right to question - even if the Autism diagnosis were to be changed in the future... he has what he needs to overcome the difficulties he is facing right now in his development. The best thing anyone said to me so far was 'You know, your son was created by God as who he is, and God knew that. He also created you as his mother, and God knew that too. So, really, you should look at it as a compliment that God knew you could handle it' We had some time to deal with our initial reaction. We came to terms with it & also decided that we had a lot to be thankful for. There are a lot of autistic children out there who are totally non-verbal. There are some Mommies and Daddies who never heard 'I love you' uttered out of their child's mouth. That is not the case for us. So, What happened then? Well, they came out to do the evaluation in a group of 3. They already knew they were evaluating him with concerns of HFA (High Functioning Autism), so they brought along the Service Coordinator, a Psychologist, and a Speech-Language Pathologist. They work together to complete a full developmental assessment with certain tests, tools, and games. After that, they recommend the plan of therapy - called an IFSP (Individual Family Service Plan). They went ahead and told me that they would be suggesting SLP (Speech-Language Pathology), DT (Developmental Therapy), and OT (Occupational Therapy), which I will explain in another post. The formal report was mailed to us about a week later. They sent us this very detailed form explaining each area of development - what is falling within normal ranges, what isn't, and why they have a concern. I was quite impressed at the amount of detail they went into, as well as how well they listened to us. So, along about a week later... we were given a list of SLP and DT therapists to choose from. I was determined to pick the best of the best, but really had no clue what I was doing. So, we finally settled on a couple people who had good credentials and experience. Near the end of June, we began therapy.
June 2, 2008: Our son was diagnosed with Autism We have always known that there was something a bit different about him - it just never really manifested itself in a way that was a hindrance to his everyday life. He was a super happy baby, though he never had an attachment to any person ,blanket, or stuffed lovie. He could play by himself for hours. Each time we would read in a baby book that he should 'now be capable of playing on his own for 15 minutes', we would look at each other and chuckle, knowing that our son could sit for an hour straight turning pages in a book and pretending to read. He babbled on time, crawled on time, started to walk on time. I wasn't exactly sure why I suspected anything, now that I look back. He didn't ever like to eat; I guess that was one thing. From that very first spoonful of avocado when he was 6 months old, he has NEVER liked to eat. The same month that his baby sister was born, he turned 18 months old. He learned to count to 10, learned all his colors and shapes. Then began naming his letters and memorizing books. He cautiously colored with crayons and pens, beginning to draw shapes and then letters, and then went on to write letters and words. The funny thing was - that while he excelled in his cognitive skills and learned each new thing in one or two sittings - he was unable to use the large vocabulary he possessed in order to communicate to us his most simple needs. More drink, I'm hungry, Hold me, Its Hot, Help..... Its not that an 18 month old should be fluent in any language, but most of the time they can communicate in some way their basic needs. We had worked on sign language since he was about 9 months old. He picked up fairly quickly - yet 'more', and 'all done' never held any meaning to him. He just repeated everything we would say back to us. There were many nights at dinner that dad and I would look at each other wondering if there was something wrong with him not communicating. Not being able to tell us that he was still hungry, full, or just wanted something different he would spit his food back out and yell. Dad would say to me 'I wonder if all kids go through this' and then I would assure him that it was a phase that every kid just gets past. Not once did he ever bring something to us so that we could help him to open it or fix it for him. Not once did he ever tell us he was hungry or thirsty. Not once did he ever point to something way up high that he wanted oh so badly. Instead we would get a lot of grunting and hear whining in the other room where we'd find him frustrated that he couldn't get the top off the container of crayons. The ball dropped in May. I had an overwhelming sense that there was a problem with the disconnect between his intelligence and his communication. I saw him reacting in new ways when he was in social situations or outside the safety net of our home - he would stare off in a daze, he would be paralyzed by the music and act as if there was no-one else or nothing else going on, he would babble in a very interesting tone when encountering another child, he would draw on all the surfaces of the room with his finger, and on particularly upsetting days he would dart his eyes around the room jerking his head up, down, and to the side. Then we went out of town to visit some friends for 5 nights. He absolutely loved the little girls that we were staying with. Being about the same age, they all played together very nicely. One afternoon I looked over and saw Dad with tears in his eyes and I asked him what in the world was wrong. Looking at one of the precious little girls pushing a toy car down the hallway and back had brought a deep emotion to the surface. 'He doesn't do that, Why doesn't he do that? Little boys are supposed to want to push cars and make noises' During our stay, each nap time, each bedtime, and each new day in a new house with new people kept building up and building up for him. By the end of our stay, he was a different little boy. You could see the frustration welling up inside of him. One afternoon, we were sitting on the couch, not doing anything at all. I think he wanted to get down, but instead of finding a way to communicate that to me - when one of the girls got too close - he reached out and bit my shoulder so hard I bruised purple and black for days. At that point, we decided that we would seek an evaluation. In the back of my mind I had always considered Autism, but I always told myself 'No, he's so happy, he laughs all the time, he makes such good eye contact'. Evidently all that doesn't matter. Autism is a huge puzzle. Each person on the spectrum is affected very differently. Once you get that diagnosis, you basically have to throw EVERYTHING you've EVER heard about autism out the window and start fresh. I don't claim to know much about Autism, I am just here trying to be the voice my son needs. His is not and will never be 'just a label', he is not Autism, he is Autistic...and extremely High Functioning at that. There are days that I doubt the diagnosis because he is so typical. Then there are the days that I just want to hold his precious face and rock him because he seems not to understand why the world around him frustrates him so bad. For the most part, he is just your average little boy. He loves to play... he loves to dance with Mommy... he loves to horse around with Daddy... he loves music and TV and chocolate. He loves to sing and hug and kiss. He LOVES going 'bye-bye car' and going to church. He loves his Sissy, shares with her well, loves visits from family and friends. He talks and plays constantly and just loves life. There are those few things about him that are Autistic; lining up toys and other objects, echolalia, non-functional speech, scripting, extreme interest in cognitive skills, and disordered social interactions. Above all... he's just my little boy. Nothing has or will ever change about that. I will be using this blog to keep a record of his achievements in therapy, his new goals, his new interests, and his daily hillarious happenings. Follow along our journey if you will.