Updated: December 2023
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Letter from a parent:
“When Mike was young, I was working closely with the College of Education at the University of Illinois. The department head of special education was an acquaintance of mine. At that time, she advised me that we must begin working on transition issues from high school to post-secondary with Mike by the sixth grade. We fought very hard with the school district to get Mike weaned from an aide by eighth grade- the school did not want to do it! However, we were able to use doctoral students from the University to assist in the process. The department head allowed the doctoral students to work with Mike for two years until we successfully weaned him from the aide by the time he entered high school. Additionally, we had a wonderful speech pathologist, and a psychologist, as permanent members (paid for by us) of Mike's IEP team.
I am telling you all this so that it is obvious that even informed parents don't always know so much! Parents/educators need to know when/how to intervene. And as you say the intervention needs to be "less is more".... And that timeline needs to be early, early, early. When Mike was in sixth grade, I witnessed the aide turning the pages in the book for him in history class! I almost had a MOM meltdown right there at the Jr. High. That is when I knew SOMETHING had to change at school.
However, a big thing for us was that we did not look at the home environment! We were so focused on Mike's academics and his desire to do well in sports that there was very little time left over at home for life skills. Mike was very motivated in sports and academics. He drove himself to school every day and had a group of neurotypical friends he hung out with on a regular basis. We treated him like any other regular high school kid. He didn't have a lot of chores, because he was so busy- I did the laundry, dishes, etc. -I guess we thought, as with most kids, he would just "get it" when he went away to college. Home and high school are nothing like what awaits our kids when they go to college-think about the statistics of dropouts after the freshman year for neurotypical kids, due to difficulty adjusting-let alone our kids on the spectrum who face many more challenges!
Of course, there were definitely times when Mike was bullied in high school - but after meeting Mike and seeing how big he is and easy going, you can see why this was something he handled very well. He was the most happy- o-lucky, resilient, and laid-back student. We would never, in million years, have expected "the descent," which you so accurately describe, that Mike fell into. Parents need to know this can happen! Mike's troubles were compounded by the devastating party that took place at our house while we were in France.
In some ways, we were shocked, but slightly relieved to realize that this descent into anxiety and depression was a common phenomenon and not just something that happened to Mike. The statistics for success (in college and work) are so dismal for kids on the spectrum. Many can fall prey to this devastating turn of events. Even most experts - psychologists, psychiatrists, have yet to understand what is happening to these kids. Trust me, we went to many, and no one could figure it out until we took Mike to Johns Hopkins.
In addition to not having Mike concentrate on life skills, after reviewing the list you created (which was a set of worksheets about creating long term/short term goals and how goals only get worked on when we break them down into action plans) I realized other errors we made. The school and we thought we were helping Mike by making sure he had assignments on his laptop everyday so he could do well academically - another big mistake - he was not expected to get his own assignments in the gen ed. classes, they were written on the board in his "resource study hall."
By the time Mike left high school he had scholarships and admittance to six colleges and had been a varsity athlete in three sports. We handpicked and interviewed carefully at the schools, but, despite promises, most were only tutorial-based programs for an additional fee. While he had the scholarships and admits, he probably did not have the skills to succeed. Not only was it very difficult for Mike to be organized but he ran into problems in the dorm during his second semester, which really ramped up his anxiety/OCD.
During high school, Mike had no idea of true self determination; I truly don't think that is built into the school system or IEP process, unless things have changed a great deal. As a student, Mike's self-determination would consist of him saying he wanted to go to college at his IEP meetings. As a family, everyone went to college, so how was he to know anything different? In retrospect, we should have been looking into vocational options and placements. The other "big clue" which we should have considered was his written language disability. Composition was truly a challenge for him, and you really can't get through college if you can't write an essay.
In the long run, would we have been happier if Mike would have had Cs or Ds on his report card, or been on a vocational training path? Knowing what I know now, and if the self-determination had truly been Mike's, then the answer is a resounding yes! He had no clue, nor did we of what Mike could really do by himself.
So here we are today - Mike is working on putting his best foot forward, but it is shaky. The path is not yet clear, so at this point, it will be one step at a time. With your help Michelle, we now have some direction.
We will let you know how things develop.
Thank you so much!"