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, Government/Legal Matters Related to Special Needs

Blog #79~Reboot 2014

Blog #79~Reboot 2014

happy new year 2014

The New Year gives us a clean canvas to start over.  It’s an opportunity to paint a fresh picture.  The past year was full of many challenges and changes.  I am ready to re-boot and here’s why……

2013 started out good until Nick’s birthday in February.

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The heater broke……. We had to bundle up for the celebration….. Here I am with Nick’s grandparents Jim and Theresa….. Brrrrrrrr  🙂

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The first task was to tackle the annual report for “Continuance of Guardianship” of Nick.  It’s a two page form along with a yearly expense report.  As long as you submit this a month before the hearing, there is a good chance it will be approved.  Then, you won’t have to appear in court before the judge.  So far so good…..but not so fast…….

Bam!!!!!!!!

I got a notice from the State Department of Illinois stating that Nick’s benefits would end on his 19th birthday.  I would have to switch over from the child waiver (94 case) and apply for an adult waiver (93 case).   Somehow the PAS agency that I work with failed to inform me ahead of time.  The application process was daunting and the paperwork alone practically killed a whole rain forest.  Nick’s funding was lost for several months which meant we had to pay his respite workers out of pocket.  It took awhile and a lot fumbling through the red tape but eventually the adult waiver was approved.

See Blog #44 located in March 2013 archives for more about this debacle.

red tape documents

During the course of doing all this, I applied for SSI for Nick.  SSI (Supplemental Security Income) is available for persons who have a disability.  Nick has Down syndrome and autism and certainly qualified for this aid.  The application procedure was straight forward, done online and much easier than the process for state funding.  Again, it took a few months and a scheduled phone interview before Nick was able to receive funding.  What I have learned through this past year is that you have to stay on top of things when you are managing an adult with special needs. It’s definitely more time consuming to handle his affairs now then when he was younger.

Early spring brought on several upgrades to the house including  a new roof and siding.  Then in April, the Chicagoland area experienced major flooding. The sump pump couldn’t keep up and the water poured over submerging the basement.

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It took several months to get everything back in order. The garage and  dining room became the “catch all” in the meantime. One word…….. “Mayhem!”

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In May, Nick graduated from high school, what a milestone for big guy!

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During the summer the dry wall was restored, walls freshly painted and new carpeting installed in the basement. I was thankful for my in-laws, Jim and Theresa who helped out with putting things back on the walls, shelves and in the bar area. They were instrumental many times  helping out in 2013.

Vacation was spent in the Outer Banks, NC, it was just what we all needed.  Upon our return, Miss Mellie our beloved cat of 17 years was in poor health.  We had to say goodbye to her.

Rest in peace Miss Mellie……

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In the fall, Hank returned to Northern Illinois University and moved into an apartment.

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Nick started the post-secondary transition program called STEPS, which he will attend until he is 22.   During the fall, new carpet was installed in the rest of the house.  A fresh coat of paint was put on both the boy’s bedrooms. Twelve years and two boys, uh….. let’s just say they needed a complete overhaul!  Carpet installation is quite an ordeal. You have to pack everything up and clean out all the closets much like moving out of a house.

Fresh paint and carpet, sweet! Nick approves……

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Within a week after the carpet was put in, Al was scheduled for shoulder surgery.  40+ years of hard core tennis had taken a toll and the USTA Sectionals in August really did it in.  The surgery was lengthy and the recovery was painful. The worst is behind him; his arm is out of the sling with 6 months of rehab before he can pick up a tennis racket.

reboot

2013 was challenging, painful and filled with many changes.  The house is restored and things are nearly put back together.  I am ready to re-boot and greet the 2014 with a clean slate.  Mostly, I am looking forward to settling down, seeing what the new year will bring, and get back to writing about Nick’s world without interruptions.  That’s what is in my noggin this week.  🙂

~Teresa

Posted in Autism, Down syndrome, Government/Legal Matters Related to Special Needs

Blog #64~When Your Child With Special Needs Hits Adult Age

Blog #64~ When Your Child With Special Needs Hits Adult Age

What happens when a child with special needs hit the age of 18?  While other parents are busy visiting college campuses and searching for extra-long sheets for the dorm bed, a parent with a child with special needs is going down a different path.

Nick’s legs are long and hairy like a man, but he still enjoys sitting like a kid.  That along with watching Disney movies and Thomas the Tank Engine….. Welcome to Nick’s world 🙂

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Our son, Nick has Down syndrome and autism.  He is unable to take care of himself and live independently.  When he turned 18 years old we had to file with the court to become his legal guardian.  This process involves a trip to the courthouse to fill out paperwork, pays some fees, secure a court date and then appear in court before a judge with your child. We did not use an attorney but the advantage would be that you get in the queue faster.  Each year you are required to submit an annual report, (available from the county courthouse website), 30 days before the yearly court date.

The next step was to apply for SSI (Supplemental Security Income.)  Supplemental Security Income (or SSI) is a United States government program that provides stipends to low-income people who are either aged (65 or older), blind, or disabled. It is administered by the Social Security Administration and funded from the U.S. Treasury general funds, not the Social Security trust fund.  The application process can be done online (www.socialsecurity.gov).  Once this is processed, a phone interview is scheduled where the application is reviewed and verified.  Determination of how much the stipend will be is based on the applicant’s income, residency/ living arrangement, and resources.

The next item of business in our state was this;  when a child with special needs turns the age of 19 in the state of Illinois, it is required that you apply with the Department of Human Services (DHS) for the adult waiver which covers medical benefits and funding for respite care.  Nick had been receiving state funding through a child based waiver under the umbrella of Medicare.  The funds are used for medical benefits if needed and respite care which allows me to still teach my classes and go out and go out and have a life on occasion.  It is essential to do this before the end of the month of the child’s 19th birthday.  I found myself tangled up in some major *red tape not realizing this.  Be sure and scroll back to Blog #44~Who’s in Control? ( scroll down the right side to the March 2013 archives) for the full story about that debacle! Spoiler alert in case you missed Blog #44 the first time….. oh my!  🙂

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Managing a child over the age of 18 years old has become a part time job.  Every month, all the receipts on Nick’s expenses have to be entered on a spreadsheet to manage his checking account. If the account gets above a specified amount, SSI will be denied.  Each year the annual reports and accounting records have to be reviewed by the county judge and the Social Security Administration. The matters associated with becoming an adult special needs citizen is serious business.  Staying on top of things is essential.  Many school districts offer transition fairs and provide guest speakers who offer valuable information regarding how to navigate through the hoops of bureaucracy.    My advice is to take advantage and learn all you can before your child hits adult age. Oh, one last note~ All 18-year-old males must register for the draft, that’s right even those with special needs. The image of Nick wearing a camo uniform holding a M-16, priceless. 🙂 That’s what is in my noggin this week.

~Teresa

*Red Tape is a derogatory term for bureaucratic methods, derived from the fastening for departmental bundles of documents in Britain. 

red tape documents

 According to Wikipedia:

The origin of the term is somewhat obscure, but it is first noted in historical records in the 16th century when Henry VIII besieged Pope Clement VII with around eighty or so petitions for the annulment of his marriage to Catherine of Aragon. A photo of the petitions from Cardinal Wolsey and others, now stored in the Vatican archives, can be seen on page 160 of “Saints and Sinners, a history of The Popes”, by Eamon Duffy (published by Yale University Press in 1997). The documents can be viewed rolled and stacked in their original condition, each one sealed and bound with the obligatory red tape, as was the custom.

It appears likely that it was the Spanish administration of Charles V in the early 16th century, who started to use the red tape in an effort to modernize the administration that was running his vast empire. The red tape was used to bind the important administrative dossiers that had to be discussed by the Council of State, and separate them from the issues that were treated in an ordinary administrative way, which were bound by an ordinary rope.

All American Civil War veterans’ records were bound in red tape, and the difficulty in accessing them led to the modern American use of the term,[5] but there is evidence (as detailed above) that the term was in use in its modern sense sometime before this.”