I am the mother of a beautiful 21 year daughter who has had more than her fair share of struggles through the special education system and facing mental health challenges. In my parenting journey, I learned to expect the unexpected, had the rug pulled out from under, and finally ended up on my feet. I want to share my story to provide the hope and confidence that if you are a parent like me, you can do it. You are your child’s champion. I am also an occupational therapist that has worked with hundreds of special needs kids. I am here if you need me!
Noticing early developmental delays in my baby
My journey began when my daughter was an 18-month-old baby, with sensory issues and a significant speech and language delay, and ultimately diagnosed with developmental apraxia of speech. She went to a special preschool program in town through the public school system, qualified for Birth to Three services, and got the services she needed. Life was good. ☺️
Early school years and her first IEP
Her IEP carried over into elementary school and she continued to receive speech therapy weekly. By the time she was in 3rd grade, however, I knew there was something more than just speech going on. She was struggling to read at grade level, had short-term memory deficits, and anxiety. As a parent, I knew we could request a PPT (Planning Placement Team) at any time, so I did. After discussing my concerns and reviewing a checklist for Specific Learning Disabilities, I walked out of there with a new identification – specific learning disabilities. Goals were added to her IEP for reading as well as reading support. Life was good again.
Middle school years
In 5th grade, we were having her transition PPT and triennial review. While I thought I was prepared for a seamless transition to middle school, turned out I had the rug pulled out from under me. She “tested out” for special education. Most parents would be thrilled that their child “graduated” from special ed, however, I was not fully on board with their decision. No more speech therapy or reading help. I refused to leave that meeting without at least a 504 Plan in place. Determination? Anxiety. I requested they transfer everything that was in her accommodations and modifications page of her most recent IEP. They agreed, probably to get me out of there as quickly as possible.
High school years
Her 504 Plan, which was now for anxiety and executive functioning, carried her through the rest of her high school years, with across-the-board testing requested in the Spring of her Junior year. I needed to be prepared for when she transitioned from high school to college or the community, as I knew she would need support in many areas.
Mental health challenges for my young adult
Fast forward: Today she is 21 years old. She made it through one year of college (barely) with many supports in place. Unfortunately, her mental health got the best of her, and she had a major breakdown in Fall 2019. She has been in and out of facilities for self-injurious behaviors and major depression (ask me about navigating that process) and has currently qualified for the Department of Mental Health and Addiction Services (DHMAS) in town. She has been diagnosed with everything from anxiety, reactive attachment disorder, depression, bipolar, schizoaffective- manic type, OCD, and cognitive-communication disorder. Her reading comprehension is at an 8th grade level. She has been receiving therapy since she was 12 and continues weekly. She played the medication game, on and off several, gained weight (side effect of meds), and is currently unmedicated per her choice.
I am pleased to report that through DHMAS, in addition to her weekly therapy sessions, she will be seeing an OT for daily living, community, and social skills. Somehow things are working out, but it took a LOT of research and planning (and delays due to COVID-19) on my part navigating for her young adult transition (ask me about that process) for her to get the help she so needs and deserves. I found parent support groups, specifically the National Alliance for Mental Illness (NAMI), and learned as much as I could about mental health diagnoses. To this day, I rely on my NAMI binder as situations come up.
Reflections as a parent
I often wonder if I had fought harder during her school years, would she have gotten the help she needed? Would it have avoided a breakdown later? To this day, she struggles in so many areas, with an underlying language processing disorder and articulation issues. Executive functioning is a daily challenge as well as decreased social skills. She was always that “borderline, on the cusp” kid that fell through the cracks of special education. Not significant enough to get the services she so desperately needed, but she still struggles daily in all aspects of her life.
I felt like the system let me down and I had to do what I could to advocate for her going forward. This child had been through extensive testing all of her life: Autism, neuropsychological, psychoeducational, speech and language, had outside speech therapy and social skills training, plus a myriad of medical tests.
I hope this information could be helpful for those of you whose child is on the cusp like mine. If you would like to know more about how I navigated the system (special education and mental health) find me on Vitalxchange.