Down syndrome – Page 26 – Down Syndrome with a Slice of Autism

Blog #79~Reboot 2014

Posted on January 6, 2014January 7, 2014 by Teresa Unnerstall

Blog #79~Reboot 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.

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

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 19^th 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.

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.

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!”

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

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……

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

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……

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.

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

Autism, Down syndrome

Christmas Wishes

Posted on December 23, 2013 by Teresa Unnerstall

Thank you for reading and sharing Nick’s world this year. Have a Merry Christmas and we wish you a Happy New Year! Enjoy your holiday with family and friends.

I am taking a two week break from the blog, but there’s plenty of good stuff in the archives to dig thru and enjoy in the meantime. We look forward to sharing more fire alarm updates, stories, and information about Nick, Down syndrome and autism. See you next year (that never gets old does it?) 🙂

Cheers,

~Teresa

Autism, Down syndrome, Fun Side of Nick

Blog #78~Christmas Past

Posted on December 16, 2013December 15, 2014 by Teresa Unnerstall

Blog #78~Christmas Past

This week; a look at Christmas past with Nick and his older brother, Hank. Having a brother with Down syndrome and autism requires patience and understanding. It’s not always easy with Nick yelling, dropping things, stimming and giving us all a run for our money. I give Hank a lot of props for putting up with it all these years. Here are some of their special times together at Christmas.

Christmas in Texas, no pants required 🙂

Family gathering back at my parent’s home. I love Nick’s toothless grin!

Christmas at GMA Theresa and GPA Jim’s house in Chicago. Here’s Nick with his cousins Anna and Sam. Looks like Nick got a new musical toy 🙂

Christmas and Bears game time!

They’re getting bigger!

My high school boys…..

I hope that you enjoyed a look back at Christmas past. I treasure the many fond memories of my boys over the years. May your Christmas be filled with joy, love and peace.

~Teresa 🙂

Autism, Down syndrome

Blog #76~Social Skills and Autism

Posted on December 2, 2013December 2, 2013 by Teresa Unnerstall

Blog #76~ Social Skills and Autism

A few weeks ago I did a guest lecture at Northern Illinois University. The graduate level class topic was “Functional Communication Skills and Social Skills” from a parent perspective.

NIU at WCC Sugar Grove Campus

Blog #73 covered the topic of communication skills as it relates to autism. This week I will cover how to incorporate social skills for individuals with autism. Nick has Down syndrome and autism. It makes for an interesting mix because his verbal speech is lacking, yet he is very outgoing.

Here some of the ways in which his teachers have incorporated opportunities to practice social skills:

*Lunch bunch groups in school-play board games, practice turn taking, boundaries.

*Community outings to grocery store, library, mall, and eating out.

*School and community jobs

*Practice self-regulation through his behavior plan. Work in a controlled setting on what triggers his outbursts.

*Social Groups tailored for kids/teens with autism

*Best Buddies Program- monthly meetings, parties, bowling, movies, dances, etc…

Nick trying a hat at Jewel Osco Grocery Store 🙂 ………..

All of these opportunities have helped Nick to behave more appropriately when out in the public. When Nick was in middle school he went to each classroom and emptied the recycling bins. He was able to practice greeting students. At the end of the semester, the students made thank you card for Nick:

Having peer role models is very valuable in this process. At his recent school conference his teacher commented that Nick was quite “restaurant savvy.”

Nick’s all aboard for lunch with his classmates 🙂

Children and teens with autism can benefit in participating in social skills groups. These groups have not been a fit for Nick because he lacks the verbal skills. They tend to be suited for higher functioning persons with autism who have speech. Check with community autism support groups, speech therapy clinics and schools to find a one in your area.

Here is a sampling of topics that might be covered in a social group for individuals with autism:

*Interventions for hitting/biting and conflict resolution

*Handling transitions

*Asking friends to play and what to do if they don’t want to play with you.

*Turn taking in general conversation.

*Facilitating cooperative play- taking turns, practicing patience coping with losing a game

*Dealing with large crowds, busy settings and stimulus overload.

*Initiating a variety of conversational topics – Sometimes intense, restricted interests result in sticking with only their preferred topics (like dinosaurs, academy award winning movies, etc..)

*Working on conversations that reciprocate the interests of others in the group.

*Providing needed information based on a partner’s knowledge of the topic – Gauging length of conversational turn and working on noticing the cues others send us so we can adjust the length of our conversational turn.

Currently, Nick participates in the post-secondary transition program. His schedule includes community trips to the store, library, mall walking, cooking, vocational jobs and move and groove (dance party) along with the regular curriculum. The STEPS program also has dances and recreational trips after school from time to time. As you can see, there are many occasions built in his schedule to practice social skills. It is essential to keep Nick’s world open and provide opportunities to socialize.

This past weekend his brother came home from college. I found it touching that Nick wanted to hang out upstairs in Hank’s room a lot of the time he was here.

Nick with his brother a few years back…..

Having a child with autism doesn’t mean you have to close yourself off to the world. Look for ways to get out there and mingle. That’s what is in my noggin this week! 🙂
~Teresa

Autism, Down syndrome, Fun Side of Nick

Blog #75~ 5 Reasons I am Thankful for Nick

Posted on November 25, 2013November 23, 2015 by Teresa Unnerstall

Blog #75~ 5 Reasons I am Thankful for Nick

The road I have travelled with Nick was not in the plan. It’s the thin, grey line on the map that is bumpy and full of twists and turns. Nick has Down syndrome and autism. The pace was bogged down as he struggled to hit developmental milestones. Other times it has been lightning fast, (like when you are racing to beat him to an exposed fire alarm). After 19 years and 30 fire alarm pulls, I am very thankful for Nick and here is why:

1. I appreciate the small successes much more now. I don’t take anything for granted that a child has to learn like sitting, eating, crawling, walking, talking and especially toilet training. Each victory has been sweeter when Nick hit the marks.

2. I am more grounded because of Nick. He has taught our family to stay humble. While other moms were bragging about their child getting A’s in honors classes, being the star athlete and what colleges they were looking at, I smiled politely. In my mind I was thinking, “At least Nick didn’t pee in his pants at school this week.”

3. I’ve become some what of an expert on Down syndrome and autism. Through trial and error along with wonderful teachers, therapists and mentors I have learned what works best for Nick. I am now able to pay it forward in my writing, speaking engagements and helping other parents out.

4. Life is never boring with Nick. He cracks me up with his mischievous ways. He generates laughter and tons of “Likes” on my Facebook page: Down syndrome With A Slice Of Autism”.

Here’s Nick’s signature elbow bump, (his version of a high five) with his Dad and Aunt Laura 🙂

He’s got that look on his face like, I’m going to grab your wine) 🙂

What a jokester, hardy har har Nick……

5. Nick gives unconditional love so freely. Each morning he wakes up, lets out a fart and smiles. All through the day he showers me with kisses, elbow bumps and hugs.

I am truly thankful to have travelled down this road with Nick. It has been a blessing to be his mom. That’s what is in my noggin this week. Have a wonderful Thanksgiving!
~Teresa

Autism, Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #74~ Teaching to 21

Posted on November 19, 2013November 12, 2018 by Teresa Unnerstall

Blog #73~ Teaching to 21
Last week, I was a guest lecturer at Northern Illinois University. The graduate level class topic was “Functional Communication and Social Skills” as it relates to autism. I presented a parent’s perspective.

One of the greatest gifts we can give our kids is teaching personal independence. It’s never too early to start working on these skills. One concept brought to my attention by Nick’s support teacher from elementary school is called, “Teaching to 21.” What skills will an individual with special needs require to lead a successful life after school is finished? Here is a list of skills that should be addressed both in school and at home for students with special needs:

Assessment of Functional Living Skills (AFLS)

Source: http://autismbeacon.com/topics/article/functional_skills_for_people_on_the_autism_spectrum

“Functional skills” are those skills that if learners cannot do for themselves, someone will have to do for them. Functional skills are immediately useful and important. They increase self-help and independence and are present in every setting and throughout every stage of life:

Basic skills:
Self-management
Basic Communication
Dressing
Toileting
Grooming
Bathing
Health, safety, first aid
Night time routines

Home Skills Module:
Meals at home
Dishes
Clothing
Laundry
Housekeeping
Chores
Household mechanics
Leisure
Kitchen
Cooking

Community Participation:
Basic mobility
Community knowledge
Shopping
Meals in public
Money handling
Phone
Time
Social awareness
Manners

School Skills:
School waiting and transitions
Classroom routines
Meals at school
Classroom people, places and objects
Classroom mechanics
Outside school
Functional academics
Classroom leisure and independence

The IEP team should address these skills in goal planning and daily schedules of the student. In addition, supports should be put in place that will assist the student in reaching these goals. Here are some of the supports that Nick has used in school. Since Nick has a dual diagnosis of Down syndrome and autism, these tangible provisions give him clarity and focus in doing his tasks.

*Visual supports such as task strips, social stories, picture schedules and video modeling:

*First-then visual or app to remind student what they are working for:

*Timed Timer clock or app and Picture Scheduler app:

*Physical prompting-teacher may do hand over hand to teach a school and fade back to just pointing to direct student.

*Guiding student with visual cues (putting stickers on washcloths to teach folding sequence, sprinkle hole punch paper dots on floor to teach vacuuming, using counting templates, etc…)

For students with autism, if they can see it…. they can understand it. In Blog #5~Ready, Set, Action (located in April 2012 Archives) I wrote about how successful video modeling was in teaching Nick skills around the house. He responds to and is motivated by seeing the footage in a video format. It also landed him a community job at a local elder residence care facility.

Nick hard at work 🙂
.

Nick takes great pride in his jobs both in the community, school and at home. We continue to work on the skills needed for him to be as independent in all areas of his life so he is ready to manage things when he is finished with school. It’s all about starting early and teaching to 21! That’s what is in my noggin this week. 🙂

~Teresa

Follow Nick on Social Media:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram @nickdsautism

Twitter @tjunnerstall

Down syndrome

Blog #73~ Feeding Issues and Down Syndrome

Posted on October 28, 2013October 28, 2013 by Teresa Unnerstall

Blog #73~ Feeding Issues and Down Syndrome

Last week I wrote about Down syndrome and low muscle tone. Not only does it affect gross motor areas of development but also oral motor and speech as well.

There are studies that have suggested these factors contribute to feeding problems in infants with Down syndrome:

“The problem lies in strength, mobility and range of motion of oral muscles. (Kumin, Goodman & Councill, 1991) This can result in weak sucking, swallowing, lip closure, and tongue protrusion (Pilcher, 1998; Kumin, 1994), and gastroesophageal reflux (McCurtin, 1997). The combination of reduced oral space and limited control also contribute to feeding problems in infants with Down syndrome. Due to a small oral cavity and midfacial hypoplasia, the infant’s lips appear thin, the palate is usually flatter with a high arch in the midline and the nasal passages are narrowed. The combination of reduced oral space and low muscle tone can result in tongue protrusion.” For more information: www.down-syndrome.org.

Development of oral motor skills improve the progression in feeding:

*Breast milk or formula

*Pureed foods

*Table Foods

*Skills for sucking a nipple

*Usage of utensils (straws, cups, spoons, forks)

Nick certainly had his own struggles in this area. At three years old, he was still eating concoctions of pureed and mashed up vegetables, fruits and still blended in baby cereal that resembled gruel. You didn’t dare introduce food with any lumps that he could gag or choke on. We enlisted a speech pathologist that specialized in oral motor feeding that included an intense treatment to address these problems.

The technique used by the specialist was, “Beckman Oral Motor Intervention” http://www.beckmanoralmotor.com. Make sure that you consult with a speech pathologist who specializes in oral motor therapy and has been trained in this area. The essence of the program is to get the muscles firing both around the lips and inside the mouth. First, the muscles around the upper and lower lips were stretched. This followed with gum massage to stimulate the mouth and stretches inside the cheeks. All of this would wake up the mouth and move to the next step of resistive chewing. Nick started with a Nuk Brush for this.

The specialist insisted on doing these techniques on me. I was amazed at how alive and tingly my mouth felt afterwards. She also taught me how to do them on Nick. Consistency is the key to building strength when embarking on this program.

As I mentioned last week, Nick was very delayed in his gross motor development. Because his trunk was so weak, he sat slumped. This affected his ability to chew and swallow. A co-treatment plan of therapy helped to escalate Nick’s progress. After Nick did the Beckman exercises, the occupational therapist would work alongside placing a nubby rubber cushion under Nick to help build up his abdominal and back strength.

She placed her hands on his trunk manipulating his shoulders to maintain integrity while biting exercises were performed. The feeding specialist pulled out all sorts of foods like Cheerios, goldfish, graham crackers, and sour gummy worms and wrapped them in gauze. Then she placed them one at a time in his mouth, and he would bite down. The gauze acted like a safety net to keep him from gagging or choking. In less than a year, Nick was able to chew and swallow textured foods safely and his trunk became strong enough for him to be able to walk at age 3 ½.

I never thought I’d see the day when Nick could eat crunchy foods 🙂

Nick has come a long way since those days of sitting slump, gagging on food. I am forever grateful to all of the therapists who have made him strong over the years and continue to help him grow. He is a force to contend with in the world. Last week he managed to pull yet another fire alarm at school.

Oh no, not again….. Tally now 30 alarm pulls…..

October and Down Syndrome Awareness Month is almost over. I hope you have gained some knowledge about Down syndrome in this month’s blogs. It’s been one heck of a journey raising Nick, but all four burners are going now. That’s what is in my noggin this week. 🙂

~Teresa

Big guy overcame low muscle tone! More Halloween costume pictures over the years are located in the October 2012 archives. 🙂

Down syndrome, Physical Therapy and Special Needs

Blog #72~Down Syndrome and Low Muscle Tone

Posted on October 21, 2013August 11, 2017 by Teresa Unnerstall

Blog #72~Down Syndrome and Low Muscle Tone

October is Down Syndrome Awareness Month. In Blog #26, located in the October 2012 archives, there is a complete overview about Down syndrome.

This week I want to put a lens on one of the physical traits of having Down syndrome. Hypotonia, or low muscle tone is common in almost all babies with Down syndrome. The appearance is floppy and the muscles are flaccid. As soon as I touched my son Nick after he was born, I could feel this. He felt like a rag doll.

The good news is that hypotonia generally improves over time with early intervention and physical therapy. Within eight weeks, we met with the early infant intervention team and began the work to confront his low muscle tone. Right away, we were instructed to roll up blankets and stuff them on either side of Nick when he was sitting in his carrier. Since the muscles are so floppy, there is a tendency for the limbs to dangle open. We then started from the top and worked down. The first step was to get the neck strong. We incorporated a lot of tummy time providing lots of bright, colorful, and contrasting toys that would be stimulating. His brother Hank helped out by pushing the buttons on musical toys so that Nick would lift his head up. This would help develop more alertness as under arousal is typical for babies having Down syndrome.

Everything is ready for tummy time, look at that scrawny baby 🙂 …….

Once he was able to support his head, the early infant team began to work on building strength in his trunk. At first he had to be held at the shoulders while sitting on a play ball. The facilitator would lead the group with songs and blowing bubbles. The babies would both track the bubbles and try to pop them with their fingers. Gradually, the therapist was able to hold Nick at the chest, and after several months hold his waist while he worked on the ball. The physical therapist told us that Nick would not be able to pull up to stand or walk until his core was strong. This meant when he could sit on the ball supported with her hands down on his hips. This took a very long time for Nick.

We propped up pillows in his high chair so he would flop over to the side. His brother Hank, keeping him entertained…….

A special chair was provided by the early infant intervention program. Nick’s trunk was still weak and he had a lot of trouble sitting upright…….

Take a look at the average gross motor milestones:

Sitting alone-

Typical age 5-9 months

Down syndrome 6-30 months

Nick 22 months

Crawling-

Typical age 6-12 months

Down syndrome 8-22 months

Nick 28 months

Walking-

Typical age 9-18 months

Down syndrome 1-4 years old

Nick 3 ½ years old

As you can see, Nick’s low muscle tone affected his development in all of these gross motor areas. After his first birthday, the physical therapist suggested we try doing horseback riding therapy with Nick. He was the youngest person they had ever tried at this facility. We made the trek out to Tomball, Texas for these sessions for over a year. Nick gained a lot of trunk strength during this time. Keep in mind, not only were the muscles weak but also had less endurance. Doing the sessions on the horse helped with increasing his endurance and the sensory input was very stimulating.

Giddy up Nick……

After a year of hard work, he finally sat on his own! Nick with his cousin, Austin

Once Nick was able to sit up and crawl we began to find creative ways to get him up on his feet. Hank would often dangle his favorite musical toy at the top of the bean bag chair. As the music blared and lights flashed, Nick would climb up the makeshift mountain to reach the toy. Around this time, I also began redecorating the living room. I mounted several musical toys above the fire place so if he wanted to get to them, he had to pull up to stand. His brother also enticed him, bouncing ping pong balls on the coffee table. He would crawl over, pull up, play and laugh with Hank.

It was a long, slow rode to get him up and walking. Nick had to work a lot harder to build his strength, endurance, alertness to defy the effects of low muscle tone and under arousal. Hard work always pays off, and gets you to the top of the podium!

Nick in Middle School, brings home the gold 🙂

That’s what is in my noggin this week!

~Teresa

Down syndrome

Blog #71~Down Syndrome Diagnosis…Have No Fear

Posted on October 14, 2013December 6, 2013 by Teresa Unnerstall

Blog #71~ Down Syndrome Diagnosis….Have No Fear

October as everyone knows is Breast Cancer Awareness month. It is also Down Syndrome Awareness Month. Last year in Blog #26, located in the October 2012 archives, I did a full piece on Down syndrome awareness. Click here to check it out: https://nickspecialneeds.wordpress.com/2012/10/15/blog-26-down-s…wareness-

This year I am taking a different route. What happens to a parent when they find out that their child may have Down syndrome? One feeling that evokes the mind immediately is fear. The unknown tends arouse worry and anxiety. Nineteen years ago when my son Nick was born the doctor told us he had several markers that suggested he might have Down syndrome. Three days later, the chromosome test came back to confirm he did. In 1994, there were no laptops or smart phones to quickly Google “Down syndrome” and great websites like http://noahsdad.com to ease my worries. I was handed two brochures by the hospital administrator, that’s it. There were so many questions in my mind. How was my life going to change? What would my son’s life look like? I wonder what that crystal ball would have revealed?

Here are 5 things that I wish that crystal ball could have illuminated about having a child who has Down syndrome……….

1. Don’t worry about giving up your life. You will still be able to work, go out with your friends and take your son with you everywhere, even overseas vacations.

2. You will meet many people who will show you how to navigate this new path and teach you about courage along the way. They will be educators, therapists, specialists, advocates and other parents who will light the lanterns and guide you and help your son learn and grow.

3. Trust that all those milestones you are worried about like eating, talking, sitting up, crawling, walking and toileting will be met. Yes, eventually he will make it out of Pull-ups and Depends though this may test your limits. 🙂 Hitting these milestones may take a lot more time but when he does it will be glorious and sweetly savored.

4. Your son will teach you what pure, unconditional love is. He will wake you up with a light in his eyes each morning. He will share a great sense of humor that will warm your heart and the hearts of many.

5. One day your son will make you proud because he will be eager to work hard. He will take great pride in the jobs he does both around the house and in the community. Unlike most of us he will enjoy vacuuming, laundry and unloading the dishwasher. 🙂 Yes, there will be some things he may not be able to do. But other times he will surprise you. Just be patient and let God take him down the path that fits him.

Those are the 5 things I wish that I’d known when faced with the diagnosis of my child having Down syndrome. So, I tap all the moms on the shoulder that might be dealing with the birth of a child who has Down syndrome and say this…. “It’s going to be okay, relax and have no fear.”

That’s what is in my noggin this week. 🙂

~Teresa

Autism, Behavior/ ABA, Down syndrome

Blog #70~When Down Syndrome and Autism Intersect

Posted on September 30, 2013 by Teresa Unnerstall

Blog #70~When Down Syndrome and Autism Intersect

I just finished reading the Woodbine House book, When Down Syndrome and Autism Intersect, A Guide to DS-ASD for Parents and Professionals. As always, Woodbine House delivers the goods. I only wish this book had been available fifteen years ago when I began to suspect that Nick had something more going on than just Down syndrome.

I started to notice little things at first. Around the age of five Nick started to bang objects and exhibit other odd behaviors. After doing some internet research I stumbled upon a sensory processing disorder checklist. Nick met many of the criteria which led me to believe this was the reason for those behaviors. When we attended the local Down syndrome support group functions I also felt that he didn’t speak as well as his peers.

Nick is more interested in his hand flapping than Santa 🙂

So, I went to have an evaluation done to see if he might have autism. The results of this indicated that Nick did not have autism as he was highly social and his language deficits were a result of having verbal apraxia of speech. For more information on verbal apraxia of speech I would suggest reading this Woodbine House book, Speaking of Apraxia A Parent’s Guide to Childhood Apraxia of Speech:

Six years passed and as puberty was full on, Nick’s behavior and meltdowns became more violent and dangerous. The staff at his school struggled along as well. It was nagging at me. I brought up my concerns and the need for an evaluation for autism. The staff informed me that this was not necessary as there was already a primary evaluation of Down syndrome. We decided to have an independent evaluation done at Little Friends Center for Autism, http://www.littlefriendsinc.org. Getting the official diagnosis of autism confirmed my suspicions and gave me a sense of relief and validation. Most importantly, the formal diagnosis allowed for getting the services of the school district’s autism specialist. This specialist helped to identify what triggers set off meltdowns and was able to put a behavior plan in place along with a better picture communication system with proper training for the staff and myself.

Nick age 12, proudly stands on the podium winning the state gold medal in the softball throw at the Special Olympics…

According to the Kennedy Krieger Institute, http:// www.kennedykrieger.org, around 10-15 percent of children with Down syndrome also have autism.

For an autism diagnosis there are three areas of development that a person must show significant difficulties:

1. Social Functioning
2. Non-verbal or difficulties with communication
3. Restricted interests and activities

Some of the symptoms and behavior shown with children having Down syndrome and autism are:

*Significant lack of social response
*Difficulties with communication and reported loss of verbal and expressive language.
*Repetitive behaviors like hand flapping, spinning or rocking, fixation on inanimate objects (strings, fans, mirrors, water, etc..)
*Sensory issues including the intensified sensitivity or need for more sensory input
*Behavioral challenges including frequent tantrums and physical violence

The book, When Down Syndrome and Autism Intersect contains a great deal of information on health issues and gives practical information on tackling the complex world of raising a child with Down syndrome and autism. My best advice is this, if you suspect that a child with Down syndrome has something else going on then run; don’t walk to get a firm diagnosis. There are more services that become available to help with challenging behaviors, communication and learning for our kids. That’s what is in my noggin this week! 🙂
~Teresa

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