Blog #155~More Than Just Down Syndrome
There came a point when I felt like we didn’t fit in with the Down syndrome support groups. We stopped going to holiday parties, play groups and other fundraising events. My son, Nick lacked speech, displayed unusual and repetitive behaviors (like tapping and shaking objects along with making loud noises). His speech delays resulted in frustration on his part, which led to behavior problems and violent meltdowns. It became apparent that this was more than just Down syndrome, when he hit puberty.
We approached the school team about these outbursts, where he would throw things, trash the classroom along with pinching and scratching staff. It didn’t seem like any of us (both at school and home), could get a handle these problems. The school was reluctant about getting an autism evaluation done, as they stated; “We have a primary diagnosis of Down syndrome we can work from”. Rather than push the matter, we chose to have an independent evaluation done and paid for it (with some help from our private insurance), out of pocket.
It was money well spent. Nick got the diagnosis of Down syndrome and autism (DS-ASD). If you suspect that your child’s behaviors are more than just Down syndrome, I would strongly suggest getting a medical evaluation done by a clinician. The diagnosis of autism, was like getting the magic key, that unlocked the door to more services for our son. These services were provided in part, by the school district and outside agencies:
*Behavior intervention by the school district, autism specialist resulting in a Functional Behavior Analysis (FBA). This lead to the development of a behavior plan, specifically targeting all triggers, and how to prevent & handle crisis situations during meltdowns.
*Speech support and training using a Picture Exchange System (PECS), along with an Alternative Augmentative Communication (AAC) device.
*Toilet Training and workshops for home support.
*Additional State Funding (In-Home Family Support Child Based Waiver) which funds respite care, behavior support and safety/ health equipment to support the child at home.
*Federal Funding (Supplemental Security Income-SSI)
The formal, dual diagnosis of Down syndrome and autism (DS/ASD), helped professionals, family and friends get a better understanding of Nick’s behaviors. By getting access to these additional supports, we were able to change the strategies needed to help Nick navigate his world. His communication improved, allowing him to feel appreciated, understood and less frustrated. As a family, we felt better assisted with the autism training and having respite staff take some of the burden off us.
If you would like more information on dual diagnosis of Down syndrome and autism check out these resources:
*When Down Syndrome and Autism Intersect-A Guide to DS/ASD for Parents and Professionals:
*The Kennedy Krieger Institute- https://www.kennedykrieger.org
*Down Syndrome Association (UK)- http://www.downs-syndrome.org.uk/for-families-and-careres/dual-diagnosis/
*National Association for Down Syndrome (NADS)http://www.nads.org/resources/down-syndrome-and-autism/
In addition, there are many support groups on Facebook when you type in Down syndrome and autism in the search engine, (including my Facebook page- Down Syndrome With A Slice Of Autism). For behavior support, the Facebook page-Autism Discussion Page (Bill Nason).
The challenges of having a child with Down syndrome and autism are unique. So many parents say that they no longer fit in with the Down syndrome support groups and can’t relate to the autism groups either; they feel isolated. You as the parent, know your child best. If you suspect that your child has more than just Down syndrome, take action to get a clinical, medical evaluation and find the additional support to help your child.
That’s what is in my noggin this week.
@Down Syndrome With A Slice Of Autism on: