It was early 2000, and we had been called to a parent-teacher conference. Our daughter was turning four years old. Being a bit annoyed, I was wondering why at four, we were having an important parent-teacher conference. Our world was about to change. The first sign I knew something was wrong was shortly into their explanation of their concerns about our daughter’s learning abilities…one of the teachers began to cry. I’m thinking, lady, pull it together, WTF, it’s just a parent-teacher conference. The next word they mentioned was autism. Autism, what’s that? Okay, how do we fix it? More school, special teachers, let’s go. A typical male response, right. At this time in early 2000, autism was a new emerging diagnosis. Little was known about it, and how effective treatment plans are. All I knew then was that teachers are some of the most stoic people, and now one of them is crying. Whatever this autism thing is, it must be serious.
Slowly, the realization of what they were talking about was coming into focus. I am not a religious person, but when I knew what my daughter had in store for her, I cried and for the first time in my life prayed to someone or somebody. We dove into autism with the full force of parents motivated to find a cure. We did research, spoke to experts, read books. Only to find in those days, there wasn’t much. What we did learn was early, and aggressive intervention was required. Also, we learned the term “spectrum.” Autism can range from mild and almost unnoticeable to severe. Her early language development was lacking, and her sensory issues were challenging her. However, we didn’t feel she was severe in her particular case.
We embarked on language and sensory therapies. We quickly found that the squeaky wheel gets the attention. Our school district was not dealing with this new emerging challenge in kids. Her Individualized Educational Plan (IEP) was handwritten, illegible, and unprofessional. It was so bad I had a hard time reading it. The straw that broke the camel’s back was when the special education teacher told me that my daughter was only going to be here, holding out her palm flat, to give a level in society. I was told to prepare for that. Essentially they were kicking my daughter to the curb. Usually, I am a stoic individual. At that moment I couldn’t take it any longer, and in a not so subtle way, I told her she was out of line.
On a different note, her primary teachers were in her corner all the way. I can directly attribute our daughter’s success to those teachers, grades 3 to 6. As a result, many have become close friends. With the school district Special Ed department failing my daughter, it was time to take it to the next level. We hired a student advocate. A student advocate can:
- Negotiate with the school on your behalf
- Facilitate IEP and other meetings with the school, including mediation
- Advise you on educational services and supports
- Recommend specialists, service providers, evaluators, and school districts
- Help you write letters to the school
- Review your child’s IEP or 504 plan
- Give you information about the law
- Represent you in a due process or an impartial hearing
Once the school district found out we had an advocate, they started moving in the right direction, as they knew the next step was litigation. One of the results of the advocate was that the school district immediately went to an electronic IEP that is being used to this day.
Over the next several years and into high school, my daughter faced many challenges, mostly social issues and making friends. She was officially diagnosed with Asperger’s Syndrome (AS) in her first year of high school. I find that people with AS become specialists in the world. They will typically latch onto a subject and immerse themselves into that world. They have exceptional attention to detail that they excel in areas such as math, science, engineering, computing. Some famous people with AS are Dan Aykroyd, Einstein, Lincoln, and Ford, to name a few. One of the current most famous is Temple Grandin, of which a movie was made about her life. Claire Danes played a fantastic role in this great film.
My daughter, who is sometimes awkward but always loving, has turned into a beautiful woman that is now attending a state university. She is specializing in biology and living on her own while having many accomplishments. Social challenges still confront her once and a while, but she has learned to adapt. I think in many ways, life is all about adapting.
Some things to consider:
- Be an advocate for your child. Hard to believe, but not all school districts will have your child’s best interest at heart. Some will do what is minimally required of them. My experience is most teachers and schools match efforts if parents are part of the team.
- Bad stuff happens all the time. When dealing with a child in crisis, be confident in your abilities as a parent. You’re going to get through it. You have lots of help out there.
- You’re going to have good and bad days. That’s normal and okay. Roll with them.
- Know what to share with your kids about their challenges and what they are not ready for.
- Always tell the truth.
Thank you for reading.
By A Dad
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