Thankful

Today was a big day in our lives, especially Matthew. Today was his last day of therapy with Children's Care Hospital and School. It's hard to believe that he has come so far in such a short amount of time. When he started this program 9 months ago he had a lot of work ahead of him. Our goal was ambitious, we wanted Matthew to be able to mainstream into a regular Kindergarten classroom with as few behavioral and social problems as possible. The staff at his school knew that this was possible but last year Matthew was having a lot of problems with his classroom behaviors and social interactions with his peers and at home with Carolyn. Even though he was getting ABA therapy at school and the teachers were working with him on changing his behaviors we as his parents felt that he needed more. For those who don't know, ABA stands for applied behavioral analysis and is a proven technique to help children with autism and autism spectrum disorders improve behaviors and learn necessary social and living skills. Thankfully this was something our school district provides for Matthew but he only gets 45 minutes a week. The gold standard of treatment is 40 hours per week. Not every individual needs that much therapy but the more a person gets and the earlier the age has a big impact on how well that person will function later in life. Unfortunately, this is very expensive and it is very hard to find trained therapists in this area. The other bad thing is that this is not a covered expense with our insurance company. Believe me, I tried. I spent hours on the phone with the insurance company, wrote a letter to Senator Tim Johnson, and even filed a complaint against the insurance company with the state. The results were the same...still no insurance coverage. The real kicker is that if we lived and worked in Minnesota (10 miles away) the same insurance company would have covered this. Costs aside, hubby and I decided to foot the bill and got Matthew enrolled in a pilot program through CCHS. We started with 6 hours per week and the therapist would come over to the house and work with Matthew on a variety of skills and techniques. His first goals were pretty basic like dressing himself correctly and brushing his teeth and washing his hands and face. I also had time set aside for Matthew and Carolyn to play games and do activities together. This may sound strange but the two of them had lots of problems getting along and I was constantly breaking up fights. Over time Matthew learned how to play nicely with his sister. There are still fights between them but compared to what it was last year it is so much better. They now take turns and share (mostly) toys and don't bite each other. As Matthew progressed he started doing more complicated tasks such as riding his bike around the neighborhood and recognizing street signs. He even learned how to cross at a stoplight. The therapists also focused on seat work and Matthew did a lot of matching and language recognition skills. Some of the activities were working on lengthening his attention span and others were targeted to his learning how to wait for something whether is was a turn or a favorite activity. He still struggles with always wanting to win a game or trying to turn an activity or task into a competition but that will hopefully come in the future. The real test came this September when Matthew started Kindergarten. He was put in a regular classroom with a shared aid. It was recommended that he have weekly time in a special ed classroom in case he fell behind on his work. A few weeks into the year I received a call from his school caseworker saying she didn't feel the need to pull him out of class because he was having no big problems doing the work and keeping up. The following week I e-mailed his teacher and asked for a progress report due to Matthew having a medication review appointment. She wrote back that Matthew was a delightful little boy who was doing very well in school and she was seeing no real problems with his behavior or social skills. I still get misty-eyed when I think about that e-mail. With our main objective met, hubby and I decided that the costs of this therapy outweighed the benefits of him continuing on so I contacted CCHS and we agreed to a discontinuation date in late November. Transitions are still hard for Matthew so it wasn't fair to just stop everything at once just because we thought he should be done. The extra few months gave the therapists time to finish up on the goals they were working on and do a final evaluation of his progress and skills. On paper, the data looks really impressive. I don't quite understand everything but I do know that he made huge gains in social and academic skills. Last week the two therapists Kat and Kari along with the Psychologist Ryan met with me at home and discussed the final evaluation. Everyone was very impressed at how much progress Matthew had made and agreed that he was ready to be out of the program. Today Kat and Kari came over one last time. We didn't have school today so Carolyn got to be a part of the party. We had pizza and cookies and they gave Matthew the game Hungry Hungry Hippos. We've played it many times today. Part of me was sad to see them leave since they have been such a big part of our lives for most of this last year. I now have to entertain Matthew during those therapy times so I have more work on my hands but when I look back at how much he has grown and changed I don't really mind at all. Tomorrow we give thanks for the blessings in our lives and the people who mean the most to us. I'll always be thankful for my husband and children along with other family members and my friends but tomorrow I'll also be giving thanks to Kari and Kat for all the work and love they have put in this past year.