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.

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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.

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*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:

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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

 

 

 

 

Posted in Autism, Down syndrome, Recreation/Leisure and Special Needs, Resources for Special Needs

Blog #84~ Resource Links Related to Down syndrome and Autism

Blog #84~ Resource Links Related to Down syndrome and Autism

Today is President’s Day, so there is no school.  My ability to focus and write is hindered by interruptions from Nick who is making loud mooing noises, pushing the fan button on the microwave, dropping things behind the TV and watching “The Other Guys” while tapping a can of tennis balls against his mouth.  Yes, that’s a slice of  Down syndrome and autism here this morning………

Nick tennis balls

So this week I’ve included my favorite resource links related to Down syndrome and autism:

Down syndrome links:

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www.ndss.org  The National Down Syndrome Society is the national advocate for the value, acceptance and inclusion of people with Down syndrome.

www.ndsccenter.org  The country’s oldest national organization for people with Down syndrome, their families and the professionals who work with them.

www.nads.org   NADS is the National Association for Down syndrome and a solid support group in the Chicago area.  There is also more links for dual diagnosis of Down syndrome and autism here (including a complete list with signs and symptoms for parents wondering if their child has more than just Down syndrome). 

www.gigiplayhouse.org   Down syndrome Awareness Centers all over the Midwest and expanding to New York, NY and Mexico. These centers provide play, fitness and social groups.

www.noahsdad.com   This site is invaluable for parents who have a baby or child with Down syndrome. There is some great information and useful tips and links and positively focused.  It is one of my favorite websites.

www.futureofdowns.com   Run by parents of children with Down’s syndrome.  Covers a wide range of topics regarding babies and children with Down’s syndrome, pregnant and in need of advice on screening and tests or have just received a positive diagnosis following an amnio or CVS.

Autism Links:

autism ribbon

www.facebook.com/autismdiscussionpage  This page was developed by Bill Nason, MS, LLP to discuss tools that help children on the spectrum. This is one of my favorite links related to autism.

www.autismspeaks.org  Autism Speaks provides information and advocacy and good general information and links.

www.autism-society.org  The Autism Society improves the lives of all affected by autism through education, advocacy, services, research and support.

www.tacanow.org  Talk About Curing Autism and has a ton of links and articles along with coffee groups.

www.brianraymondking.com  Brian King teaches his proven methods to individuals and their parents across the country in a private one-on-one format using the latest technology. He  writes a variety of articles, is an author, speaker and trainer  for schools, parents and support groups.

www.bridges4kids.org  Great resources for special needs families. One of my favorite go to sites.

www.myautismteam.com Parents share daily trials, triumphs, questions and recommendations

www.mayer-johnson.com  Boardmaker software for assistive technology/AAC devices

www.teeach.com  Information on TEEACH materials

www.pottytrainingsolutions.com Gathers the most common problems and their solutions to help take the stress out of this major milestone.

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

www.specialedadvocacy.org  Advocacy site for parents and teachers

Down syndrome and autism links:

down syndrome and autism intersect

www.nickspecialneeds.wordpress.com My site which provides information on topics specific to a dual diagnosis of Down syndrome and autism including supports, communication and speech/feeding issues, occupational therapy, behavior/ ABA and much more.

www.ds-asd-connection.org  Offers good information related to a dual diagnosis of Down syndrome and autism.

www.theupsideofdowns.org  Provides support, advocacy and information specific to Down syndrome and autism.

In addition, let me add that there are several Facebook groups directly related to Down syndrome and autism.  These groups are a safe place to share information, ask questions, and share the crazy things that our kids with a dual diagnosis do.  No one in these FB groups would  bat an eye if you posted a picture like this……… (In fact they would hit the like button and add in their own pictures in)…….

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There is help out there right at your finger tips.  Let me know if you have any more to add in.  Thank you for reading and sharing my blog. Now, it’s time to gather up the contents of my purse that Nick decided to dump all over the living room floor.  That’s what is in my noggin this week! 🙂

~Teresa

Posted in Autism, Down syndrome, Feeding, Personal Hygiene, Toileting

Blog #67~Dear Abby, Down syndrome and Autism Style

Blog #67~ Dear Abby, Down syndrome and Autism Style…

Dear Abby

Advice Columnist, Dear Abby 🙂

It’s comforting to know that as a parent of a child who has Down syndrome and autism I can click the mouse and find support online. When Nick was born 19 years ago, a nurse handed me a couple of brochures on Down syndrome.  That was it!   This is the vision sustained me after hearing of Nick’s diagnosis of Down syndrome. Thank you, Chris Burke…..Actor, advocate, icon, my rock star!

Chris Burke

Ten years later we would meet Chris in person at the National Down Syndrome Congress convention.  (For more information: http:// www. ndsccenter.org)

My older son, Hank with Chris Burke at the NDSC  Convention……

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There are several groups that I belong to on Facebook. (Just type in “Down syndrome and autism” in the search engine.) These parents are going through many adversities trying to get through the day and night with their kids.  Most are sleep deprived because their children are up all night turning on lights stimming, banging things against the wall, and opening and slamming doors.  I dedicate this week’s blog to these brave warriors who get up weary, reaching for the Visine and Advil to take on another day.

autism and sleep cartoon

Down syndrome and autism support groups are a safe haven to share war stories, tips, get advice, commiserate and laugh.  No one flinches when a parent writes about a walk on the local nature trail, and stopping to go back to their dawdling child.  The 11 year old stood there having just pooped in the middle of the path. What can I say but, it happens.   Topics last week were varied.  One mom needed help on how to explain and guide her daughter about getting her period.  I added a comment about a great book that tackles puberty and body privacy issues called:  “Taking Care of Myself,” by Mary Wrobel.  There were dozens of helpful tips from other parents who had daughters that had dealt with this issue.  Another parent had just given birth to a baby who has Down syndrome.  I was moved by all the support given to this new mom. Here are just a few of the many offered to her:

  • “Go home and bond and love your baby”
  • “Congratulations you have been blessed.”
  • “Get regular checkups and a heart echogram to rule out heart defects.”
  • “Low muscle tone may make it difficult to nurse your child but don’t give up.”
  • “Focus on the baby, not the Down syndrome.”
  • “Go to www.noahsdad.com it has great information presented positively.”
  • “Check out www.futureofdowns.com it has a lot of good information.”

It’s good to know that the struggles of feeding, toileting, hygiene, sleeping, sensory, gross and fine motor issues are felt by so many parents.   For a long time I was alone.  I pulled away from the Down syndrome support groups because I didn’t fit in.  Nick didn’t progress like the kids who just had Down syndrome.  After Nick’s diagnosis of autism I reached out to the Chicago based group, National Down Syndrome Association: http://www.nads.org.  Within NADS, there is a group is called “More than just Down syndrome.”  I found a new home here.  We have a unique bond because these parents get it!

We’ve have been through it all with Nick.  Our days are far from perfect. He still wakes up some nights but at least he isn’t banging the walls or turning on all the lights.  But some things have become easier as he has matured into an adult.  Just yesterday we gave him the best, most cooperative haircut ever!  Miracles do happen. 🙂

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As I wrote about in Blog #66, reaching out to a support group has helped me realize that I am not alone on this path. I’m not the only one who has bent down and had to clean up my child’s poop.  Bless these warrior parents for getting up and fighting the good fight!  That’s what is in my noggin this week!

~Teresa

Posted in Autism, Down syndrome, Recreation/Leisure and Special Needs

Blog #66~Taking the Leap to a Support Group

Blog #66~Taking the Leap to a Support Group

I can’t make it there.  I have two boys that are 19 months apart under the age of two.”

“I have it under control.”

“We are okay.  There is no need to reach out to the local Down syndrome support group.”

“I have no energy to get out in the evening to make it to a meeting.”

Those are some of the excuses I have used.  It’s hard to take the leap to a support group.  Over the years friends and teachers have offered names and phone numbers of other parents whose children had Down syndrome.  I found it difficult to make those cold calls as well.  It’s not easy to open up and be vulnerable around people you don’t know.  Every parent handles the diagnosis of a child’s disability in their own way.

Eventually I did reach out to the local Down syndrome support group.  What I found was a community of individuals who had been on their own roller coaster of emotions.  They had dealt with uncertainty and doubt.  They had experienced anger, fear, worry, sorrow and guilt.  These parents offered encouragement and reassurance.  In addition, support groups can provide a forum for sharing feelings and concerns as well as providing information, advocacy and resources available.  See more information at: http://www.ndss.org/Resources/New-Expectant-Parents/Finding-Support/#sthash.dTRJb4bF.dpuf.

When we moved out to the east bay area outside San Francisco we didn’t know anyone.  The Down Syndrome Connection: http://www.dsconnection.org  provided resources, after school classes, social events and an invaluable kinship.

5 Year old Nick with his buddy playing in the Challenger Baseball League….

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Nick at the Down Syndrome Connection Picnic 🙂

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Before we relocated to the Chicago area twelve years ago, the local support group called National Down Syndrome Association, NADS: http:// www.nads.org,  provided a list of parents that lived in the area which we were planning to look for a home.  These parents were so open to answer my questions about school districts and gave me emotional support even before the moving truck had pulled up to our house.  NADS continues to provide services and has been instrumental in making a difference with Nick having the second diagnosis of autism.  Within NADS, there is also a sub-group called “Down syndrome and More,” which holds retreats for families dealing with a second diagnosis.

Nick at the NADS Retreat….. 🙂

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Music Therapy at the NADS Retreat…..

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These days there are multitudes of online support groups and Facebook pages to reach out to.  There are several Facebook groups specific to Down syndrome and autism.  Be sure and check out my resource page for more.  As a parent I have gone through phases where I thought I had things under control.  When Nick’s body was raging with hormones during puberty he had massive meltdowns.  After talking to a few parents whose children had Down syndrome also had autism, I realized the need to get help.  I also quit being ashamed that I was a bad parent that couldn’t control my child.  By reaching out to the support groups for assistance, I found out that I was not alone.  It has made all the difference.

Help is out there, sometimes you just have to take a breath and make the leap.  That’s what is in my noggin this week.

~Teresa