This is the story of a Great Lakes Bay family’s journey navigating parenting a child in our community with special needs. To protect the privacy of this family, we have changed their child’s name and some minor details.
Our Special Needs Journey
Like any mother, when my oldest child, Alison, was a baby I worried about her development. It took a long time for her to start talking and the “language explosions” my other mom friends with babies around her age bragged about weren’t coming. My intuition turned out to be correct and Alison needed to enroll in Early Intervention for speech therapy. She spent a year receiving weekly visits in our home and than at 3 years old, we transitioned into speech therapy through our school district.
At 4 years old, Alison’s evaluation showed that she had progressed so much that she no longer qualified for the Early Intervention program. We were so proud and also scared. What if she fell behind again? She was doing really well in preschool so we figured we could always have her re-assessed when she started in kindergarten at our neighborhood public school.
Meanwhile at home, Alison was struggling. She frequently was overwhelmed and would meltdown in public even though most of her same-age peers had outgrown those behaviors. As parents, we worried about her all the time. We mentioned it to her pediatrician at a sick visit because we were desperate for help.
Our doctor referred us to a local therapist and we began regular visits. It became clear that there was something medical going on. We filled out all sorts of screening questionnaires as we pondered possible diagnoses: autism, anxiety, and ADHD were all floated. We were realizing that we might be in for a rough transition to kindergarten even though Alison was very bright intellectually and was a loving, outgoing child.
September came and Alison started kindergarten. It was a disaster. We received frequent notes and phone calls from the school as she would melt down in her classroom. We were extremely concerned as she was now struggling at home and at school. I read and re-read books about special needs kids I checked out from the public library. She fit some characteristics of different diagnoses but nothing matched perfectly.
Alison’s therapist recommended we had her evaluated for autism and we joined a 6-month long waiting list. When we finally did have the evaluation–the team examining her said she didn’t meet the current qualifications for autism spectrum disorder (ASD) but would have if they hadn’t been changed in 2013. The autism specialists said they couldn’t put her in their program but that she did appear to have noticeable deficits in her social skills similar to children with ASD.
We were devastated. It was back to the drawing board medically. At the same time, we were trying to improve Alison’s social skills. So like many parents, we signed her up for different athletic organizations. She couldn’t manage participating at the same level as her peers and she struggled to keep up with the expectations. I started researching special needs organizations and realized that those weren’t a great fit either. She seemed to fall into a gap of being “too typical” for a special needs group but “too special needs” for a typical group.
Eventually, we were able to get Alison more help through her school as she qualified for an IEP and began receiving some additional supports. The school began working on her social skills formally and we continued private therapy after school.
We also were interested in trying private occupational therapy but our insurance would not cover it without a qualifying diagnosis. We went for a few sessions just to get some tips on how to help her regulate her emotions and the occupational therapist gave us some pointers that were really useful. Paying out of pocket for these services long-term was cost-prohibitive though.
While we have found a good treatment regime after a lot of trial and error, Alison continues to need additional adult support emotionally beyond the level of most peers her age. However, academically she is now doing phenomenally well. Unfortunately, we are still searching for just the right fit for after school programs, summer camps, etc. We would love any suggestions! To comment or give give suggestions, click HERE!
Early Intervention: www.1800earlyon.org
Read about other PARENTING ISSUES by clicking HERE.