First Week of ABA

Charlie is officially the busiest toddler I know. ABA therapy started this week, and we have run the little man ragged. (He fall asleep at 6:20 this evening. We had no success in trying to wake him for dinner, he was out cold. Hopefully he won't wake up at 4:00 a.m.!) Charlie will be receiving 10 hours of ABA therapy a week. In the world of ASD, this is actually not a lot of ABA hours. Many children go for 20 + hours a week. However, this was the number of hours the owner suggested to us, so hopefully she thinks this is sufficient at least for now. Charlie's weekly schedule looks like this:

Monday: ST 1:30-2:30 (starts June 1)
OT: 2:30-3:30
Tuesday: ABA: 8:00 - 12:00
Wednesday: ABA: 8:00 - 10:00
Thursday: ABA: 8:00 - 12:00
ST: 3:00 - 4:00
OT: 4:00 - 5:00
Friday: Music Class 10:30 - 11:15 (starting June 12)
Saturday: Swimming lessons
Sunday: Soccer (starting June 14)

Somehow, come August, we are supposed to mix school into this equation. Whew. Speaking of school, Adam and I are really brainstorming over the best fit for Charlie for next year. We had been planning on either continuing on at the JCC, which is a great pre-school, or the public pre-school EELP program. In Florida, starting at 3, children with disabilities and developmental delays can go into the public pre-school program. The school system will do an evaluation to determine what services the child needs, then sit down with the parents and develop an IEP to map out the services and education plan for the child for the year. There are 2 options in the public school system here -- a spectrum class, or the EELP class. The spectrum class, from what I am told, is kids on the spectrum (hence, the name). From what I have been told, it usually includes more severely autistic children, many of whom may be non-verbal. Charlie's occupational therapist does not think a spectrum class would be a good fit for him. She believes he would be one of the highest functioning and, therefore, would not get much out of it. Not to mention, he would be observing some severe children with severe behavioral issues and may start immitating the behaviors. Numerous people, therapists and other parents, have told me if we go the public school route to push for the EELP program. The EELP program is a shmorgasboard of children with varying diagnoses. There are some good EELP programs, then there are some that are basically glorified babysitting. You don't know what you're going to get until you get there. Unfortunately, they won't allow me to observe an EELP class at our local elementary school until they have already started evaluating Charlie.

On the recommendation of a number of people, including Dr. Carnavale, Adam and I (and the kids) toured Sydney's School for Autism this week. It is the only school in Tampa servicing pre-school autistic children. Frankly, I went in with fairly low expectations. I thought it was autistic children only, but was highly surprised to learn, over half of the children are non-autistic (or neuro typical). This was a huge plus to me. They have a regular pre-school curriculum that is age appropriate for the children. The school provides ABA therapy which the autistic children receive every day, approximately 5 hours a day (some of this is 1:1, some in a group setting). Also, each autistic child has an aide to help them through the day to keep them on focus and involved with the class. Speech therapy is provided through the local school district and there is also some play therapy and music therapy included. There is not traditional OT, but there are elements of OT included as well. However, what impressed me the most is that each autistic child is paired with a non-autistic child to play and interact with througout the day. They work with the non-autistic child to initiate play and socialization with the autistic child. I have to admit, I absolutely LOVE this concept. Through none of his other therapies will Charlie receive socialization like this, in a NATURAL setting with a CHILD HIS OWN AGE. ABA, OT and ST are great, and are needed, but, just as important, if not more, is socialization.

As Adam can tell you, I have been very on edge this entire week. I admit, I have been feeling pretty down this week. We have just been so busy arranging all of Charlie's therapies that I have not put a lot of thought into the socialization aspect of autism. I knew it was a concern, but for some reason, this week it hit me hard. I have been reading a lot about this, and think it is every bit as important as all of the other therapies Charlie is already doing. In fact, really it's more important as this, more than anything, will affect his lifetime happiness and ability to make his way in this world. I know that many autistic people find socialization very stressful and challenging. I believe we have to start NOW working on these skills. Yes, Charlie is only 3, but this is the critical time in his development where he is the most influenced by observing and imitating his peers. Right now, Charlie has very little to do with other children except for those he knows very well. Even then, he'll get excited to see them and will talk about them at home, but when he is with them, he does not interact with them. Even today at swim lessons I observed him as he repeatedly put distance between himself and the boy sitting next to him. The instructor kept scooting him back over to sit side by side, and Charlie would inevitably scoot back in the other direction. He even turned his back towards the boy on a few occasions. He has been doing this since we started at this swim school. Also, today at the park, a very social little boy got too close and Charlie got angry and pulled his hair. (Thankfully, not very hard and the little boy didn't even cry, but it is plain to see that social situations are stressful for Charlie sometimes.) The socialization therapy that Sydney's offers is very enticing and has me very interested so much, in spite of the absolutely astronomical tuition the school charges.

We still have a lot to think about, but we are considering Sydney's very seriously. When I first suspected Charlie had autism, THIS is what worried me so much. I was not very concerned about his academic future as much as his social one. I just don't want him growing up isolated with no friends. I am reading a book now about behavioral interventions for autistic children. The longest chapter in the book discusses working on social skills. The author discusses how many austitic children sit alone at lunch, are alone at recess and any other "free time" in the classroom. They report interest in joining groups of children, but don't know how to do it or are too afraid to try. I just can't stand this thought without knowing we tried everything we could for Charlie. I just want him to be happy. I don't care about the rest, that will come in due time.

To that end, we signed Charlie up for soccer at the local YMCA. His "games" (if you can call it that for a 3 year old) will start in June. Team sports are good for him right now. We also signed Charlie and Addison up for music classes this summer at one of the local children gyms in our area. Charlie and Addison both love music and dancing, so hopefully they will enjoy this. They get to play instruments and dance in the class. I figure it's another form of music therapy. We are also strongly considering signing up Charlie for karate classes. There is a school in Tampa that has classes just for autistic and special needs children. I have read a lot about martial arts and autism. In fact, there was an article in last week's paper about a little boy who is autistic and has just blossomed after taking a year of Tae Kwon Do classes. I am a big believer in martial arts, having trained in it myself. I was actually in the process of exploring classes for Charlie before autism even entered the picture. Autistic people often flourish in martial arts because it is structured and they can gain a real sense of self-esteem and confidence. Also, it is an extension of OT as it exercises every muscle group and in children's classes, they often do obstacle courses and other fun games to help with hand-eye coordination.

I know, you read all this and think, they are running that poor boy ragged. I even worry about that. But, I think in this instance, we have to maximize every possible potential. The more that Charlie is out there participating in the world, the better. I am trying to pick activities he really likes. He likes sports, particulary kicking and throwing balls, so hopefully soccer will be a hit. He loves music and it really seems to relax him, so the music class was a no-brainer. I think, given some time, he could really learn to like karate as well.

Adam and I will have to think very hard about school options for next year and go with what we think is best for Charlie.

On a positive note, Charlie did very well in his first week of ABA. After his second day of ABA, he came up to me and said "Want a prune." He used to request quite frequently, but now it is rare. And yes, he likes prunes. . . in fact, loves them. He also filled in the spaces of the alphabet sone with me as well as Take Me Out to the Ballgame. Of course, autism is so frustrating because he did this for me on Wednesday, but then would not do it the following day. Every day is different.

It struck me this evening that we are really only about 2 months into this. Charlie was just formally diagnosed this month on May 4. Although I strongly suspected it at his birthday party in April, it really wasn't until the following week that I was sure of it and right around then is when we started the GFCF diet. Boy, how things have changed in a very short amount of time. I feel like it has been much longer, probably because we have been so busy. I do feel like Charlie's receptive language skills are better. He does not space out as bad and you usually only have to say his name once to get his attention. He also usually listens to instructions after only being told one time. His eye contact is also better. He still flaps his hands, but it may have decreased somewhat. His finger flapping (or hand puppets) have definitely decreased. He still has visual stims where he puts his fingers up to his eyes and wiggles them or looks at his fingers out of the corners of his eyes. He has also started mouthing objects a lot lately. For about 1 1/2 weeks he started a really nasty habit of sticking his hands down the back of his pull-up. We got on him about this one and told him to take his hand out. Thankfully, he listened well and now is not doing it very much. He does seem to be slightly more aggravated and has had some aggression towards his sister and others. It's like he just gets overloaded with noise and has a sudden burst of temper, grabs someone and squeezes, and then it's over almost as soon as it started. I do give him a grilling every time he pushes his sister or pulls her hair. He is in for a world of hurt when that girl gets a little older and whacks him back. I think she's going to be a pistol.

I am hoping this week brings a little more peace for me. I have to work at not feeling so edgy and try to not let my mind wander too much. We just need to pick a path and go with it, then trust that it will all work out.