Posted in Adult Day Programs for Special Needs, Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Recreation/Leisure and Special Needs

DS-ASD~Fall Update 2019

DS-ASD~Fall Update 2019

Happy first day of fall ūüôā! Here is an update on my son, Nick who is 25 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). My son attends an adult developmental training day program which he enjoys very much. The program has a nice variety of learning and enrichment activities incorporated throughout the day. Outside this program, Nick enjoys spending time with his personal support respite workers in the community going out to eat, movies, parks and other activities.

Some of the highlights of Nick’s day program are community trips, including shopping, visits to parks and local amusements along with going out to eat. In house, the curriculum includes learning centers, communication, functional living skills, recreation, music, movies, gardening, crafts, cooking, Friday fun days and other themes round out this program each week.

Here are a few pictures of Nick at his adult developmental training program:

nick sweeping keeler      Nick nature walk keeler     Nick visor keeler      Nick learning centers keeler

nick connect game

On 9/11 the clients at his program made thank you cards for local first responders. Here’s Nick giving cards to a police officer:

Nick and APD

Nick’s verbal skills are limited, due to having the additional diagnosis of autism and verbal apraxia of speech along with Down syndrome. He uses an Augmentative and Alternative (AAC) device and picture exchange system (PECS) to communicate his needs. There are two ways that I know that he likes going to his day program. Over the weekend, he packed his lunch and put it in his backpack, which he set by the front door. He also took the school icon out of his PECS book and puts it on a Velcro task strip and handed it to me. It’s nice to see how much he wants to go to this program. The routine and structure helps individuals with Down syndrome, autism and other intellectual and developmental disabilities navigate their days successfully.

That’s what is in my noggin this week.

~Teresa ūüôā

Follow Nick and see more pictures of him in action, along with other stories:

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 ūüôā

~Teresa

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism 

 Instagram @nickdsautism

Twitter @tjunnerstall