Posted in Autism, Behavior/ ABA, Down syndrome, Dual Diagnosis Down syndrome and autism, Parenting Special Needs

DS-ASD~What To Do When It’s More Than Just Down Syndrome

DS-ASD~ What To Do When It’s More Than Just Down Syndrome

If you are a parent, teacher, caregiver of extended family member of an individual who has Down syndrome, you are aware of how challenging it is to hit those developmental milestones. There are even more speech deficits, sensory integration problems and challenging behaviors associated with a dual diagnosis of Down syndrome and autism (DS-ASD). My son Nick is 25 years old and has DS-ASD. Years ago we suspected that his behaviors and speech delays were perhaps more than just Down syndrome. We got a clinical, medical evaluation to determine that he also had autism. Getting the secondary diagnosis enabled us to receive additional services and support.

DS-ASD Ribbon

Additional Services and Support for DS-ASD:

Speech and Augmentative Alternative Communication

Behavior Support Plan (BSP) and Applied Behavior Analysis (ABA)

Specialized Training for Toileting

Federal and State Funding for Respite Care and Equipment

Support Groups for DS-ASD families online and on Facebook

Besides the additional services and support, we got validation that our son’s challenging behaviors and speech deficits were more than just Down syndrome. This gave us a peace of mind as a family, that we were no longer alone on this new path.

To read more about additional services, support and links related to a dual diagnosis of Down syndrome and autism (DS-ASD) click here:

https://nickspecialneeds.com/2016/09/12/blog-155more-than-just-down-syndrome/

Getting the secondary diagnosis of autism opened up new avenues for our son to get help with communication and tackle the unique behaviors that hindered his progress both at home and school. This made a huge difference in all aspects of his life and ours. It’s a very different path than just Down syndrome, but with support your child and family can navigate it more smoothly.¬† That’s what is in my noggin this week.

~Teresa ūüôā

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

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 ūüôā

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

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

Blog #155~More Than 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 and inability to communicate, resulted in frustration on his part, which led to behavior problems and 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 in school or at home. The school IEP team 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 new diagnosis of Down syndrome and autism (DS-ASD). If you suspect that your child’s behaviors might be related to more than just Down syndrome, I would strongly suggest that you get a referral from your primary care physician to get an evaluation for autism.

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, 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 Support was requested from the school district, A BCBA certified autism specialist did a Functional Behavior Assessment (FBA). This lead to the development of a Behavior Support Plan (BSP), specifically targeting all triggers, and how to prevent & handle crisis situations during meltdowns. BSP’s can also target skill development in a variety of areas like toilet training which is very challenging. After the BSP was put into the IEP, we collaborated as a team. We built in specific visual supports and sensory breaks into his day, which helped him to stay focused and regulated.

*Speech Support and training on how to properly 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 use visual supports to promote independent living skills inside the home.

*Additional State Funding (In-Home Family Support Child Based Waiver)  This is funding for 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.

Getting the secondary¬†diagnosis label of Down syndrome and autism (DS/ASD), helped the school staff, therapists, medical professionals, family and friends get a better understanding of Nick’s behaviors and additional needs. By getting access to these additional supports, we’ve been able to change the strategies needed to help Nick. It’s important to note that with co-occurring DS-ASD, the autism symptoms often supersede over those related to Down syndrome. Behaviors and additional needs associated with DS-ASD are complex.

DS-ASD Ribbon

As a result of obtaining these supports, Nick’s communication improved, allowing him to feel understood, respected and less frustrated. As a family, we felt better assisted with the training provided from the BCBA and our local autism center. Applying for the state waiver and securing the funding for respite staff took 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)

-The Down Syndrome-Autism Connection http://www.ds-asd-connection.org

The challenges of having a child with co-occurring Down syndrome and autism (DS-ASD) 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 with Down syndrome may have symptoms associated with autism, I strongly suggest that you take action to get a clinical, medical evaluation. The autism label doesn’t change who your child is as a person, it gives you a better understanding how to meet the child at their own level.

That’s what is in my noggin this week ūüôā

~Teresa

Follow Nick:

Facebook, Instagram and Pinterest @Down Syndrome With A Slice Of Autism 

Twitter @tjunnerstall