Sturr Family of Rockford, MI 160 Courtland St. 616-866-8837 fax: 616-866-4790
Tom is an architect here in Michigan. He makes any and all "ideas" actually work! I'm (Beth) a full time mom now. In the past I was a paid teacher! We lived in Fort Worth, Texas when I taught Severely Multiply Impaired students. In 1990 Kailey arrived and I quit being a paid teacher and became my child's parent and "unpaid" teacher. The therapists I had worked with wanted to tape "normal" development so starting at day #3 of Kailey's life, we began taping, assessing, etc... We THOUGHT we were looking at and taping "normal" development. So we have some wonderful footage of Angelman P.T., O.T. & S.T. testing right from birth. There has got to be some good use of that. Because I was around abnormally developing students for so long, far away from any family members, and Kailey being my first child...I just took her development all in stride. I wasn't going to be one of those worried teacher/parents frantic that my child wasn't "on schedule". I was reveling in being a mom! I played and interacted with Kailey both as a mom AND a teacher of severely impaired, which meant I did a lot of sensory stimulation play, adapting activities to help Kailey be successful at them and encouraged by them, and really worked at building beginning communication through body-on-body play, signaling for requests, etc... Mom and teacher really melded into one so Kailey really got therapy from day 1 I guess you could say!
I could see Kailey hit on most developmental skills (albeit very late) but I would only observe the skill a few times. Until her brother Cooper arrived, I had forgotten just how much repetitious practice a normal baby does ALL DAY LONG and how the mom doesn't have to work at it all day to help the baby learn/practice the skill. Being a teacher in this area first was both helpful and a hindrance in ways. We would explain away things like: crawling ("well Tom never crawled, he scooted on his bottom"), talking ("Beth was a late talker." Come to find out it was because all my siblings talked for me. My mom said once she made them stop doing everything for me I began talking!), reflux/spitting up ("It must be because she scoots on her bottom (and very fast too) and it upsets her stomach so much."), slow development ("every child develops at their own pace, just enjoy this blessing we have."). At 15 months of age her head circumference measurement fell off the chart in percentile. Starting at 6 mos. of age it slowed in growth and by 15 mos. fell below 5% on the chart, which is an A.S. characteristic. We were then referred to a specialist. That same week I found out we'd be expecting Cooper, our son. What a blessing that was for so many reasons.
So our life of therapies and all that added "stuff" that comes with this began. We moved to Michigan to be closer to family and in the transition found out about Angelman Syndrome. I have listed below the various stages, "therapies", and programming that we have tried over the years. If you'd like to talk about any of them, feel free to call us, e-mail us, or fax us at (616) 866-4790.
1. We chose both a P.T. and O.T. who had a strong background and understanding of Sensory Integration therapy. Also a S.T. who understood that being a Speech Therapist meant being a Communication Therapist! That's usually not a problem with infants being treated but becomes a problem when our infants turn into toddlers then children and adults. Somehow S.T. forget they are Communication Therapists still. (To protect myself, not ALL are like this!!!!but way too many.)
2. Tried Cranial-Sacral Manipulations with a D.O. in Fort Worth.
3. Did Mom's Day Out church programs with goal of inclusion down the line as well as did Special Needs Infant/Toddler program.
4. Moved to Michigan, began Doman-Delacato Program (aka: Patterning, Institute for the Achievement of Human Potential) I got tired of therapists saying "research shows that any more than 30 min to 1 hr. of therapy 3 times a week and the kids don't learn any more or any more quickly." My feeling was, a normal baby does "therapy" 24 hours a day, 7 days a week, 365 days a year. This just doesn't add up. Now, my feelings on the Program we did are varied. They went to the other extreme than the therapists. I WAS young and energetic so then was the time to go for it. But after a set amount of time doing the program we decided to take what we thought was worthwhile from it, incorporate it naturally and functionally into our day as best we could, and re-focus on our entire family. The areas I felt made a big difference in Kailey were the physical program and the sensory program. All that these encompass do not require of one to go through the Doman-Delacato Program. I'd be happy to share what they consisted of with you. I hope to add a separate link on this at a later date after I return from Finland to go into detail.
5. Kailey began school in Michigan. Pre-Primary Impaired Pre-School Program (ages 4,5) Full Inclusion in Kb and Kindergarten at neighborhood School 1 block away (ages 6,7) and what would be considered more mainstreaming by combining programming in Autistic Room (A.I.), regular ed. classroom, and community; our community (ages 8,9,10).
6.Auditory Integration Therapy: See Books/Catalogs in H.E.L.P. Index for the books Dancing in the Rain and The Sound of a Miracle.
7.Therapeutic Horseback Riding
8. Music Therapy
9. "Anti-Drool" Surgery: That's not the official name but it'll do!!!! This was one of the best things we did. Will write more on this later.
10. DMG
I will add more later when I return from Finland. Ran out of time!