Posted in Behavior/ ABA, Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #223~When It’s More Than Just Down Syndrome

Blog #223~When It’s More Than Just Down Syndrome

Parents of a child with Down syndrome will post questions online, about the possibility of their child also having autism.  Their questions are, what are the signs and symptoms, and also what is the benefit of having a secondary diagnosis of autism with the primary diagnosis of Down syndrome (DS-ASD)?  Having navigated the path of a dual diagnosis of DS-ASD for 24 years and working as a dual diagnosis specialist and consultant, I can attest to the benefits of getting the secondary diagnosis of autism along with Down syndrome.

Do you suspect that your child, student or client with Down syndrome may also have autism?  Learn about this:

*The signs and symptoms of DS-ASD

*The benefits getting an evaluation and secondary diagnosis of autism related with Down syndrome

*What additional services are available to support a dual diagnosis of DS-ASD

*Resources and support related to having a dual diagnosis of DS-ASD

Click here to learn find out: @https://nickspecialneeds.com/2016/09/12/blog-155more-than-just-down-syndrome/

Getting the secondary diagnosis of autism along with Down syndrome was the key to unlocking the door for more specialized training, communication and behavior support, funding and respite care for my son, Nick.  It also lead me to find support groups that are dealing with tough issues that are unique to children and adults with a dual diagnosis of Down syndrome and autism.

magic key       down syndrome and autism intersect

Please feel free to share this blog post and any others that I’ve written.  My goal is to enlighten, educate and provide support for parents, families, professionals on navigating the path for children and adults, with special needs.  Message me if I can be of help, and be sure to check out our social media sites below.  That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice of Autism

Instagram @nickdsautism

Twitter @tjunnerstall

 

Posted in Augmentative and Alternative Communication (AAC), Autism, Behavior/ ABA, Dual Diagnosis Down syndrome and autism, Uncategorized

Blog #155~More Than Just Down Syndrome,DS-ASD

Blog #155~More Than Just Down Syndrome, DS-ASD

My son, Nick has 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 and 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 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.

photo-26

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 with the school, 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...….

magic key

Here are the additional services we received with the secondary diagnosis of autism for our son Nick who also has Down syndrome.  Obtaining these services took some time, and didn’t happen all at once.  But the effort to get them, has been well worth it. 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 Assessment (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.

ipad touch chat.JPG         photo (123)

*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 school staff, therapists, medical 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:

down-syndrome-and-autism-intersect

Book Supporting Positive Behavior DS

*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 🙂

~Teresa

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism 

 Instagram @nickdsautism

Twitter @tjunnerstall