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 Autism, Down syndrome, Resources for Special Needs

Blog #98~More Special Needs Resources

Blog #98~More Special Needs Resources

How do I even try to come close to topping last week‚Äôs blog post?¬† Ryan Solomon’s¬†story about being Nick‚Äôs Peer Partner touched so many people.¬† This post got 1,750 views (the most ever)¬†on¬†my¬†Facebook Page Down¬†Syndrome With A Slice¬†Of Autism!¬†¬†ūüôā¬†Just in case you missed it, here’s the link,¬†and don’t forget the box of¬†tissues:

@https://nickspecialneeds.wordpress.com/2014/06/02/blog-97-being-…s-peer-partner/

Nick and his Peer Partner Ryan…..

Peer Partners

This week is all about more resources related to special needs.  During the recent NADS Family Behavior Retreat, I lead a brainstorming session to pool together all the resources the parents had.  We put our noggins together and found support in these areas:

*Autism Support and ABA Therapy

*Advocacy and Legal

*Doctors, Dentists and Specialists

*Therapists

*Recreation and Leisure

*Online Support Links

*Toileting and Personal Care

*Tech Support and AAC Devices

*Safety and Wandering Prevention 

Here is what we came up with.  There are many more that are based out of the Chicago area that are not listed below. If you would like those as well drop me a message.  Please note: This is a parent recommendation list.  NADS does not endorse, recommend, or favor any products, processes or services on this list.

Autism Support and ABA Therapy: 

www.easterseals.comEaster Seals offers programs, training and equipment for families

www.theautismprogram.org Autism resources

Advocacy and Legal:

www.SpecialNeedsFreedomGuide.com Free Estate Planning Guide

www.LifesPlanInc.org  Estate planning

www.specialneedsadvocacy.wordpress.com Advocacy for parents

www.specialedadvocacy.orgAdvocacy site for parents and teachers

Doctors, Dentists and Specialists, Therapists (are all Chicago based)

Recreation and Leisure (most are Chicago based but here are a few others):

www.nps.govNational Park Services free camping tent and tools for first time campers

www.discovernac.orgNational Abilities Camp in Park City, Utah

www.thebikerack.com Special needs bikes and bike modifications in St. Charles

www.joniandfriends.orgParent/child camp in Michigan

www.gigiplayhouse.org Down syndrome Awareness Centers

www.icanshine.org Loose the Training Wheels bike camp

diveheart.org  Scuba and Snorkeling for persons with disabilities

www.bigbeadjewelry.com  Special needs micro-enterprise

www.specialsparkle.com Jewelry micro-enterprise run by a young adult with Down syndrome

www.downsdesigns.comSpecialty clothing and jeans that fit

hammertravel.orgTravel opportunities for special needs

Online Support Links:

www.parentcenterhub.org  Extensive information and help with links your state/local agencies

www.behavioradvisor.com/FBA  Behavior support site

www.myautismteam.comNetwork site for parents

www.bridges4kids.orgGreat Resources for special needs families.

www.mayer-johnson.comBoardmaker software

www.teeach.comInformation on TEEACH materials

www.bridges4kids.orgIEP Goal helpful ideas

www.noahsdad.comEnjoyable site highlighting Down syndrome

Toileting and Personal Care:

www.especialneeds.co/diapers-pads-incontinence-swim-diapers.html

www.Theraquatics.com  Swim diapers for child and adults

www.incont.org  Diapers, swim diapers and related products

wetstop.com Bed wetting alarms

Tech Support and AAC Devices:

www.easterseals.orgAssistive tech evaluations and training

www.mydynavox.com Free 30 day trial app available ($29 monthly thereafter)

www.silver-kite.com/touchChatCommunication application for iPod/iPad technology

www.assistiveware.com/product/proloquo2goAugmentative and Alternative Communication

Safety and Wandering Prevention:

www.awaare.org.  Autism Wandering Awareness Alerts Response Education has a comprehensive list of tips, materials and tools.

www.medicalert.org Medical ID bracelets

www.projectlifesaver.org Tracking system located in various cities

www.caretrak.com GPS Tracking bracelets connected to participating police departments

safetynetbylojack.com  GPS tracking device for wrist or ankles

caretrak bracelet

There are more resources and links in Blog #84 and #85 (located in the February 2014 archives). If you have any others please share them in the comment section below. This list (much like Nick’s behavior plan and * painting the Golden Gate Bridge) is never quite complete and always evolving.

Golden Gate Bridge with the family and my niece Courtney when we lived outside San Francisco 15¬†years ago. ¬†Note barefoot Nick (he would never keep his shoes on back in then)…….

golden gate bridge

That‚Äôs what is in my noggin this week. Stay tuned for more about Nick‚Äôs world next Monday. ūüôā

~Teresa

*According to goldengatebridge.org:  There are a couple of misconceptions about how often the Bridge is painted. Some say once every seven years, others say from end to end each year. The truth is that the Bridge is painted continuously. Painting the Bridge is an ongoing task and a primary maintenance job. The paint applied to the Bridge’s steel protects it from the high salt content in the air which can cause the steel to corrode or rust.