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 the local support group holiday parties, play groups and other fundraising events. My son, Nick lacked speech, displayed unusual and repetitive behaviors. These stimming behaviors included tapping, shaking and throwing objects. Vocal stimming and yelling was another behavior that he exhibited. His speech days 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 elementary school IEP 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, could get a handle these problems both at school and in our home. 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...….
Here are the additional services we received with the secondary diagnosis of autism for our son Nick who also has Down syndrome. These services were provided in part, by the school district and outside agencies:
*Behavior intervention by the school district, BCBA certified 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 on how to implement a Picture Exchange System (PECS), along with an Alternative Augmentative Communication (AAC) device.
*Toilet Training and workshops for home support This included coaching on how to develop and implement a timed toileting schedule and visual supports to promote independent living skills inside the home.
*Additional State Funding (In-Home Family Support Child Based Waiver) This funds respite care, behavior support and safety/ health equipment to support the child at home.
*Federal Funding (Supplemental Security Income-SSI) A federal income supplement program funded by general tax revenues (not Social Security taxes): It is designed to help aged, blind, and disabled people, who have little or no income; and: It provides cash to meet basic needs for food, clothing, and shelter.
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’ve been able to change the strategies needed to help Nick navigate his world. His communication improved, allowing him to feel understood, respected and less frustrated. As a family, we felt better assisted with the autism training and having funding for respite staff that takes some of the burden off us.
If you suspect your child with Down syndrome may have autism, read this link by the National Down Syndrome Society for the signs and symptoms: @https://www.ndss.org/resources/dual-diagnosis-syndrome-autism/
Additional resources for navigating a dual diagnosis of Down syndrome and autism:
*When Down Syndrome and Autism Intersect-A Guide to DS/ASD for Parents and Professionals and Supporting Positive Behavior in Children and Teens with Down Syndrome books:
*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/
*Facebook Support Groups
-Down Syndrome With A Slice Of Autism
-Autism Discussion Page (Bill Nason)
-Down Syndrome and Autism (there are several of these groups, all very supportive and openly honest)
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 🙂
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