When Connor was first diagnosed with autism, figuring out which component of his care was the most critical for his success presented a challenge. Despite wanting to give our son the world, there are only so many hours in a day and so many dollars in the bank. We have done private speech therapy, in-home ABA therapy, adaptive swim, music therapy camp, adaptive baseball, integrated play groups and social skills programs. I am sure there are other things I cannot even think of off of the top of my head, but needless to say, if we found an intervention that we thought would help Connor we always gave it a shot.
However, as Connor got older, I quickly realized that no matter how much money or time we spent on outside therapies, we could never accumulate as many as hours and resources per day as he had available at school. Spending 7 hours a day at school (8:30-3:30) versus the 4-5 hours we had at home which have to include dinner, bath and bedtime; made it obvious that a large portion of my son’s success was going to depend on the interventions that he received at school, so I dove head-first into learning about his educational rights and his very unique and specific needs.
Let me preface this by saying that our public school district has been victim to outrageously high levels of administrative turnover (at least 7 Directors of Student Services and 5 Superintendents in the 5 years Connor has been in public school) as well as lack of appropriate funding for special education (we are currently on another budget freeze). Couple these large scale issues with other smaller issues and you quickly realize why there have been pervasive problems within special education. To make a long story short, you can have great teachers, related resource providers and paraprofessionals available and you will still need appropriate funding, resources, on-going training, and administrative support to create successful special education programs. Without every piece of the puzzle, it just doesn’t work.
After discovering the depths of the issues impacting my child’s education, I started exercising my right to call PPT’s to address my concerns rather than waiting for his scheduled annual reviews; his first couple years in pre-k we had more meetings than I can count. I went to the newspaper and got involved with an investigative journalist who was interested in looking into the issues within special education in my district and used that as a platform to highlight the need for change. I started TAFA as an autism parents support group to connect with other parents in the community. I spoke at Board of Education and City Council meetings and found any community events related to individuals with special needs that I could attend. I discovered my right to file a complaint with the state Department of Education when my son’s IEP was being mishandled, and to always ask for Prior Written Notice after leaving a PPT where I had requested a change to his IEP. I learned to record PPT meetings to ensure that everything was covered and to be able to listen back if I needed to. I learned to always come prepared with data and evaluations to back my requests, but, most importantly, I learned that despite being at a table with a handful of people with more advanced degrees than my own, I was a valuable member of that PPT team because I am Connor’s mother.
During Connor’s pre-k years we fought for and were granted a 1:1 BCBA, an extended school day, and eventually outplacement to a private school for autism at age 5. Outplacement was the best choice for us at that time, we saw firsthand how the availability of autism-specific resources, the intensity and level of intervention was crucial to Connor’s success. He was talking more and self-stimming less, he potty-trained, he completely stopped mouthing items and no longer exhibited pica and his behavioral issues like elopement had significantly decreased. However, after 3 years in an outplacement and with serious consideration, we requested that Connor transition back to public school. It was a very hard decision to make, one that we only made after ensuring that all appropriate and necessary resources were in place for the transition; a decision that we made when we took a long hard look at life-long goals for Connor. A decision that we made knowing that we would have to work diligently alongside staff to address long-term issues with special education programming in our district. We wanted him to have access to typical peers for social modelling, functional communication and learning appropriate social behavior. Also, we wanted him to be educated in the community where he lives, enabling his peers to become better allies and advocates for him when he enters the work force and adulthood. We felt that inclusion in public school was mutually beneficial for Connor and his peers, allowing the other students to see how valuable it is to get to know those who are different and to decrease stigmatized beliefs surrounding autism.
We have seen the benefits of both public education and outplacement firsthand. There are pros and cons to each, and every single child has unique needs that have to be considered when choosing an educational placement. These are some of the toughest decisions to make and require constant vigilance to ensure efficacy. My heart goes out to every parent who has been in our shoes, who dreads PPT’s, who is fighting with every ounce of conviction they have, who loves their child beyond the confines of academic placements, evaluations and ratings scales. Navigating the world of special education is not for the faint of heart, just know that you are not alone.
With every major change to Connor’s education, with every huge life-changing decision, there have been times where we have lost sleep, lost hope, lost faith and to be honest, probably even lost a bit of our sanity to worry and despair. We cannot guarantee that what works one month or one year will even work the next, but we can guarantee that through it all, we will be right there beside our child, exercising his rights to an appropriate education and fighting for him every single step of the way; because he is worth fighting for.
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