When anyone is diagnosed with a disease, there’s a whole new vocabulary to learn. Words and acronyms that weeks before you didn’t know existed are roll off your tongue. Parents of children on the autism spectrum are no different.
If you had asked me eight years ago what PDD-NOS, IEP or ABA were, I would have looked at you blankly. Now I can easily tell you PDD-NOS stands for Pervasive Developmental Disorder-Not Otherwise Specified and it’s a diagnosis many parents dread since it means something isn’t quite right with your child, but the doctors don’t know what. As for IEP, that’s Individual Education Plan and it relates to how the school will work with your child and ABA is Applied Behavioral Analysis and it’s a type of therapy used on children with autism.
Figuring out what all the lingo means and how it applies to your child is daunting. For our family, the IEP process has been particularly challenging. Before our son was diagnosed, we started him at a small private school; he thrived in the setting with its small class sizes and once it became clear something wasn’t “right,” we decided to keep him there. According to the laws of our state (Wisconsin), the public school district is required within reason to give treatment to students with disabilities who attend a private school. Michael wasn’t officially diagnosed with autism until he was 8. At that time, we petitioned the school district to do an evaluation to decide if he met their criteria for educational autism, which apparently is different than the medical definition. After many, many months, they said he did meet the requirements, but since we did not live in their school district – although the school he attended was located in their district – they would not issue an IEP. We were then sent to another school district where they performed the same tests and came up with the same conclusion, but they would not issue an IEP either since he did not attend school in their district and ordered District No. 1 to offer the IEP and services. (Don’t worry if you’re confused, we surely were and I was brought to the brink of a nervous breakdown dealing with this!)
Meanwhile through all of this, Michael was at his worse point. He was stimming often, very anxious and just not able to function well at school (I had to bribe him daily to get to school with the treat of applesauce served in the school office.) His small school and teachers were doing all they could to help – giving him an extra desk to help with his organizational issues and giving him a scribe to help on his spelling tests to help alleviate this anxiety – but he was still struggling.
I finally threw up my hands and enrolled him in the local public school in District #2 in an attempt to get him the therapies he needed. That was honestly the worst mistake I ever made. He was only there for three months and it was a terrible experience for him. He didn’t know anyone and his classroom teacher didn’t challenge him at all – despite his social difficulties and anxiety Michael is very intelligent and performs at or above grade level in all areas except spelling. His speech therapist and learning specialist were great, but he saw them for about 30 minutes a day. So we switched gears again and moved him back to his private school; District #1 finally come around – letters to the superintendent as well as to the state department of education may have helped – and put together an IEP, providing Michael with 40 minutes of social skills therapy each week at his small school. We supplemented the social skills therapy with in-home therapy on coping strategies and communication issues as well as some occupational therapy to help with his poor coordination. I basically put together my own patchwork plan for him so he could stay in an environment where he felt comfortable – a key for a child with anxiety.
I was reminded all of this about three weeks ago when the district contacted me to say it was time to review Michael’s eligibility for special education services. It’s something they need to do every three years and this time, I am more optimistic. The district staff has been responsive and open to discussing ways to use assisted technology to help him overcome his handwriting challenges. He has come a long way in the past three years. Michael went through a major life change – moving to middle school this fall – and he did great. I worked with the school staff on making sure they knew his needs and all of his teachers have been wonderful. They adjusted his schedule so he could have time with resource teachers to work on needed areas. His homeroom teacher helps check him out every day to make sure he has what he needs for that night’s homework.
Three years ago, I never would have imagined this much progress. As I look to the future – high school and beyond – I need to remind myself how far Michael has come and hopefully he can continue to improve and someday live that independent, fulfilling life that I want so badly for him.
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