It was a cold snowy morning in January of 2014 when we were blessed with our first child. Much to our surprise, only minutes after she was born, we were told that there was suspicion of her having Down syndrome.
As first-time parents, we had all of the usual jitters that revolved around eating, pooping, weight gain, and naps. These typical worries were combined with a lot of fear and unknown about parenting a child with a cognitive disability. Our goal was to give Sidney, our daughter, the appropriate resources to allow her to reach her potential.
Through early intervention services, Sidney started having therapies in the home (PT, OT, Speech) at six weeks old. We worked hard and cheered her on as she learned to walk around age two. She was potty trained around age three.
We were able to connect with local families with children with Down syndrome in the metro Detroit area.
We connected through groups such as the Down Syndrome Guild of Southeast Michigan and Families Exploring Down Syndrome (FEDS). The more individuals with Down syndrome (DS) that I was fortunate to meet, the more I realized that while their chromosomes might be the same, that each person was a true individual with strengths and weaknesses like anyone else.
For instance, some people with DS are super chatty. We noticed that Sidney’s speech and vocabulary remained significantly delayed, despite all of our efforts. However, we just chalked up the speech delay to her chromosomes. We hoped that she would start talking more on her own timeline.
In March of 2020, the world (and Sidney’s school and her routine) shut down. We started to see new behaviors such as repeatedly asking to visit her grandma’s house, refusal to do school work/learning, and a tendency to spit or “blow raspberries'” when she was frustrated. We also noticed more aversion to things such as hair brushing, and less ability to make eye contact. Sidney had just turned six and was reading close to age-level when all of the academic progress came to a screeching halt.
As parents, we were very distraught and did not know what to make of the changes we were seeing.
Combined with a global pandemic, emotions ran strong! Thankfully, we had a dear friend who worked at the University of Michigan. They recommended that we have Sidney seen by a Developmental-Behavioral Pediatric Specialist (medical doctor). There are typically long waiting lists at insurance-approved sites. After a several-month wait, Sidney was seen and diagnosed with Autism Spectrum Disorder (ASD). Having this medical diagnosis opened the door for us to start receiving intensive in-home therapy called Applied Behavioral Analysis (ABA).
Most importantly, as parents, it gave us a team of professionals to help us to learn about and connect with our child. There are varied opinions of ABA across the community of neurodiverse individuals. In our unique situation, it was exactly what we needed to help Sidney to express herself, start working towards independence at home, and improve her social awareness and ability to develop relationships.
According to a report released in December of 2021 by the National Down Syndrome Society (ndss.org), ASD is seen in approximately 16% of individuals with Down syndrome (per meta-analysis, although some studies suggest much higher). The NDSS also reported that the onset of ASD may occur around age five with Down syndrome. This is later than the typical population for diagnosis. We were unaware of these statistics at the time of her diagnosis. Autism was not on our radar with her being “older” at the time of her regression. We just knew our child was struggling, and we as parents did not have the tools to help her.
The challenges for us as a family with a child with a cognitive impairment AND autism now involve mainly schooling and finding a balance with academics and therapies.
Many local public schools will not allow outside ABA therapists to come in to support a student, and/or push students with Down syndrome to segregated special education rooms. There is nothing in the law to stop a private school from denying a student with Down syndrome based on their cognitive ability (we have personally had both scenarios in Oakland County).
Sidney was evaluated by a neuropsychologist who specializes in testing children on the spectrum. We were told that she is an excellent candidate for academic inclusion. This means being taught alongside her neurotypical peers who she needs to learn social cues. However, the opportunity for us to give her what she needs (adequate support in a classroom with neurotypical individuals) is very difficult to find.
We are thankful and grateful to have found a “pod school” (homeschool adjunct) who have allowed us to do exactly what she needs to learn.
However, this scenario should not be a needle in a haystack type situation like it is. Research published by the NDSS continues to show the benefits of inclusive education for children with Down syndrome and specific studies advocating for it can be found in the paper titled “Down Syndrome: Guidelines for Inclusive Education” that was published in December of 2021. I highly encourage all parents to print these guidelines. Provide them to your child’s educational professional to help fuel their efforts.
As I write this blog post, Sidney is an eight-and-a-half-year-old little girl. She loves to go to the park, and bake and cook in the kitchen. She loves to go grocery shopping with mom, play doctor and dentist (especially if the teeth are play-doh!), and torment her little brothers. Her sentences and word bank continue to lengthen and improve. And almost every day, we hear her say something that we had never heard before!
On days that she struggles, I now look at her behaviors as a form of communication. We work through them together. It is a gift and a privilege to be her mother. I encourage parents who are on a similar journey with a child with Down syndrome to trust their gut feeling. Consider reading about Autism and/or having your child evaluated if you have any question about a possible dual diagnosis.
–Guest submission from Ashley Prince