Today, we are featuring Stacie Lewin with Supermommy to the Rescue. A member of AutismLearningFelt will be featured every Monday. This is a small group and we would love to have more bloggers join us. Stacie has written a wonderful post for us. After you have read it, please leave a comment and then visit Supermommy to the Rescue and our other members.
Our Autism Journey
written by Stacie Lewin, Supermommy to the Rescue
My son Dakota was flagged for autism around 10 1/2 months. I can remember the doctor doubted me and said if I was that concerned I should see a developmental doctor. Before we went, we had hearing tests done, bloodtests, and Dakota had an MRI done. I don’t exactly remember if it was the seizures or something else that led to the MRI. The MRI showed abnormal white matter in his brain. I can remember dropping the phone and screaming as they wanted to rule out a brain degenerative disease. I felt alone as my family lived over an hour away. Turns out that he didn’t have a brain degenerative disease and they were going to monitor it each year.
We did finally get to see a developmental doctor. Let me tell you, this woman is amazing. She really knew her stuff when it came to autism. We had a couple of visits with her and by the time Dakota was 18 months, she diagnosed him with PDD-NOS. She recommended that we use WEAP – Wisconsin Early Autism Project for early intervention. She also recommended Birth to Three, speech and occupational therapy.
We did start out with Birth To Three where Dakota received speech therapy and occupational therapy. I remember at this point he sure didn’t like being dirty. He didn’t have many words and we were using signs. By the time he was three he started using two words and short sentences. We then set up appointments to be evaluated for WEAP. The doctors who evaluated Dakota suggested that he has Autism. So the diagnose changed from PDD NOS to Autism. Doesn’t matter, still on the spectrum. WEAP uses ABA therapy.
We must have gone through with therapy for a few months. I noticed there was a lot of repetition and Dakota didn’t like that. He got really bored. During the team meetings he would cry. I then decided enough was enough and we switched to a different service. The next service we had was Innovative Counseling. Their approach was using play therapy (Greenspan Therapy). Dakota did better but new behaviors came out and we had problems with therapists. They didn’t last long as we moved to another county In the new county we went with Phoenix Behavioral Health. We stayed with them for almost 4 years. They also use the play therapy approach. He did very well and made gains as well as set backs.
Once Dakota was in fulltime Kindergarten I noticed he was regressing. I decided to cut back from Intensive therapy which was 40 hours per week to 7 hours per week. Dakota continued to regress in school. His speech was getting worse, along with his dexterity, sensory, and social skills. We actually thought he would do well all day in school but, truth be told, he couldn’t handle the noise, theamount of kids, and the stress of being their all day. I fought like you wouldn’t believe to develop an IEP that would benefit Dakota. I felt the school was under educated as well as some of the staff. I was very frustrated and decided to home school Dakota for almost 2years.
Well, behaviors were getting worse and we stopped with the company we were working with and now have a counselor that comes in to work with the family. We are learning news ways to deal with the situations that come up. Changes have to be made with Dakota as well as with the way we, as a family, do things. Dakota is now back in school full time. I won’t really know how he is doing until next year when school starts. I am ok with the IEP right now, but I have a feeling things will have to change. We have come a long way in the last 8 years. My best advice to any parent is, if you have doubts or questions that your child has autism or feel that something may be wrong, don’t stop or give up until YOU are satisfied with the answers. Early intervention is the best thing that could have happened to Dakota.