Category: Down syndrome

Topics related to characteristics and information related to having Down syndrom including health, self-care and leisure activities also included in this subject area.

Posted in Autism, Down syndrome, Education and Special Needs

Blog #19~ Back to School Tips for Special Needs Kids

Posted on by Teresa Unnerstall

Back-to-School

Blog #19~ Back to School Tips for Special Needs Kids

I love scrolling the Facebook wall and seeing all of the first day of school pictures.  Kids all spiffed up in their new back to school clothes and shiny shoes.  Leaving the subdivision last Thursday, I glanced over at the bus stop filled with elementary kids and their parents all with cameras in hand.  As moms that is what we do, take that moment and freeze frame it.

I did my share of taking those pictures, Nick, age 6….

      

Spiffy!

It’s hard to believe that Nick is starting his senior in high school. He has Down syndrome and autism and is in a self contained classroom.   And yes, I did take a picture of him.

It’s a little blurry because he was rocking back and forth.

I never get sad when Nick goes back to school.  In fact I do the happy dance celebrating my regained independence, (not to mention actually being able to hear the sound of a pin drop after the bus takes him away).

A couple of things have changed over the years. I don’t feel the need to have everything so perfect anymore. Also, his school supplies are no longer the typical things like rulers, scissors, pencils or wide ruled notebook paper.  His curriculum in the self-contained classroom has shifted from academic to functional.

Nick’s school supplies….

In last week’s blog, I mentioned that age brings wisdom and an AARP card application in the mail every few months. With 11 grade school years under my belt, here are my top 5 back to school tips for your  child with special needs:

  Top 5 Back to School Tips_

1. Get the haircut early, at least a week before the start of school.  Having a child with special needs often means a lot of sensory issues and angst over haircuts.  For Nick the stress of getting one can affect him for several days after.  See Blog #18, “A Cut Above” in the archives for more haircut tips.

2. Arrange a time to take your child to the classroom before school starts.  Video or take pictures of the classroom set up (desk area, sensory area, restrooms, etc..) along with the lockers, lunch room, gym and of the teachers & aids.  I create a social story using these, much like a blueprint of what his day will be like. If a child with autism can see it in picture form, they will understand it. It will also help to keep the anxiety level down.

3. Have your child help lay out the clothes, organize the school supplies and pick out lunch/snack choices the night before.  They will feel more invested, and it makes for a smoother start to the day.

4. Arrange the mode of communication with the teacher ahead of time at the meet and greet. I found that e-mail is the best way to go. In addition, I use a communication notebook that goes back and forth to school.  I can jot down how Nick’s evening went and how he slept.   In addition, the teacher and I created a custom report in a visual form.  Nick is able to point to the icons and share what he did each day with me after school.

5. Consider doing volunteer work at your child’s school.  It’s fun and you can see firsthand how your child is doing and interacting with peers. Here are some volunteer activities I’ve done:

*Room mom helping with parties

*Chaperoning on field trips

*Art awareness presenter each month

*Working book fairs

*Making copies, laminating,  and putting together learning tools for the Case Manager/Support Teachers.

Getting organized, planning ahead, becoming involved in the classroom and communicating with the staff will help make this year a success for your child with special needs. Good luck with the new school year! That’s what is in my noggin this week. 🙂

~Teresa

 

Posted in Autism, Behavior/ ABA, Down syndrome, Dual Diagnosis Down syndrome and autism, Feeding, Personal Hygiene, Toileting, Speech and Occupational Therapy

Blog #18~ A Cut Above The Rest

Posted on by Teresa Unnerstall

Blog #18~ A Cut Above The Rest

Haircuts are no fun with Nick, period.

I can still remember the first time they started to bother him.  It was right before we moved to California in 1998.  He was around four years old. I took him in on a Sunday morning hoping the churchgoers would be worshipping and the salon would be empty.  We walked in and there was only one lady who sat relaxed in her chair and getting a perm.  I sat him on my lap and as soon as the scissors came out, he began squirming and yelling.  Next thing you know he set off the car remote I had put in my pocket.  I couldn’t get out of the salon quick enough. I slapped a twenty down on the counter and got the hell out of there.  That was one of the last professional haircuts he ever got.

Nick’s first haircut in 1996, this one went well……

Nick the early years. His hair was so soft and silky…..

It got to the point where we decided to get some clippers and just give him a home haircut.  Nick’s new look became the buzz cut.

The older he got, the stronger Nick became. Nick has Down syndrome and autism.  His behaviors became more challenging as he got older. He started putting up a big fight.  In fact, if you ever wondered why his tooth is chipped it was from him flailing his body and hitting his face on the floor during a haircut.  Al and I began to dread them as much as Nick did.  Bribes, oh I mean rewards such as a Sprite and a shower didn’t seem to help either.  He began to pitch even bigger fits and we had no choice but to pin him down.  The worst haircut was sitting on the floor of the bathroom with my legs around him and my arms holding his in a basket hold. We were covered with sweat and his fallen hair felt like needles jabbing at our skin. Nick flailed and then peed all over the floor.  We sat there in a puddle of warm urine and fallen hair sticking to us.  Worst yet, we were only half done.  Picture this,  a buzz cut front in the front and mullet in the back.

As I mentioned earlier the bigger the fight, the more traumatized he became (and the longer it took him to de-escalate).  We would finish these sessions and he would be shaking, red-faced with tears streaming down his cheeks.  It broke my heart. 😦

As Nick got into his teen years, I worried that we were going to have to go to extreme measures.  Then, there was another area of hair removal to be addressed. He was starting to grow facial hair, nooooooooooo!

Now it was already impossible to give him haircuts and clipping his toenails was no walk in the park either.  It’s much easier after being in the hot tub or a long shower so that the nails are a little bit supple.  How could we possibly get a razor to his face.  Luckily I had a good team of teachers and aides in high school who offered both visual supports and tips to tackle this next hurdle.

I have to give a lot of credit to Rob Trefil, Nick’s aide in high school.  He was able to get Nick to tolerate an electric razor and actually get in there at his chin and mustache area.  We found the roller top razor worked much better than the rotary one.  Introduce shaving a little bit at a time.  Then, increase the time with each session and lots of praise.  Having a male to model this helps a lot.

Mr. T rocks…..

Big guy shaving……

Last weekend, we geared up for another haircut session.  I was worried because we had waited too long and his mop was out of control.  It was going to be like cutting the lawn two weeks too late.

Pre-haircut Nick, it’s a bit scrappy? 

To my surprise, Nick did outstanding.  In fact, it was the easiest haircut we had ever given him. He didn’t cry or get too upset at all. Hallelujah 🙂

Post haircut Nick….. *A cut above the rest!

I think a couple of things have happened to tone down the level of anxiety and how he tolerates haircuts.  Puberty has passed along with the severe aggressive meltdowns.  I see a maturity about Nick now that he is a young adult.  As parents, we have learned more about behavior management, and use visuals to guide him through the process.  We also figured out that it’s easier to cut his hair first thing in the morning before being bombarded with sensory overload.  Finally, investing in a good pair of clippers makes the cuts go smoother. Nick even helps some with it.  I am so glad the days of holding him down in a basket hold and shearing him are gone.  That is what’s in my noggin, until next Monday may every day be a good hair day!

~Teresa 🙂

*A cut above the rest…. It is originated from the saying “you and I are cut from the same cloth” (being the fabric of life) and that the cloth, from which you were cut… was or superior quality.

 

Posted in Down syndrome, Recreation/Leisure and Special Needs

Blog #17~ Life’s a Beach

Posted on by Teresa Unnerstall

Blog #17~ Life’s a Beach*

Drip, drip drip… Last Wednesday morning we were met with nothing but grey skies and the sea blending as one. It put a damper on the day in which we just wanted to bask in the sun and splash in the water. The rain tried to beat down our souls.  But all we had to do was crack open the patio door and hear the waves.  There is something about the ocean that energizes and grounds me all at once. Here is a favorite quote of mine…..

“Why do we love the sea? It is because it has some potent power to make us think things we like to think. -Robert Henri

What is it about being by the water that awakens a person?  For as long as I can remember, Nick has loved the water. Nick is 18 and has Down syndrome and autism.

Nick age 5 with his Dad, Al……

Too Cool, by the pool, Nick age 14 at the NADS Behavior Retreat….

Nick heading to swim class at MVHS….

The thought of getting Nick to actually learn to swim seemed impossible.   I enrolled him in lessons with the special recreation department where we met Mary who had been teaching for over 30 years.  She had a no nonsense approach and Nick knew she meant business.  About 5 years ago she got him to go underwater and dive for pool toys.  Seeing Nick swimming was amazing.  He looked like all the other kids in the pool. No longer was he the boy that sat in the shallow end stimming with a cup.

A few years later I started private lessons in her backyard pool out in Batavia.  Her task was to coordinate the arms and legs together. Mary put flippers on Nick and suddenly he could feel the kicking sensation that propelled him faster across the pool.

The following summer he was syncing up the movement without the flippers and heading into the deep end.  It was magical!  His technical skills are far from Michael Phelps, but he can do a mean doggie paddle.  Most importantly, he can make it across the pool without sinking.

No flippers or flotation devices….Go Nick!

This is our third year to go to the Outer Banks of North Carolina, (simply as OBX here.)  It is a crazy strip of land known as a sandbar that rose above sea level.  Just turn the knob to Bob, radio 93.3 and chill.

OBX Beach time 2011~Hank, Sam and Nick…..

The house we stayed at has a private pool and the beach access. Nick isn’t crazy about the texture of sand, but we continue to push him out of his comfort zone.  It is important to get him out in the world.  If we don’t then his world and ours will become too narrow.

Here is a bird’s eye view much in the movie “Rear Window” of our back yard here in the OBX….

A walk down the beaches of the Outer Banks is a greeting of many characters.  Floppy hat ladies in low slung chairs reading books. I wonder how many are reading Fifty Shades of Grey (or as my writer friend, Marcia F. calls it “Mommy Porn.”) A glance to the ocean you find the sporty types throwing Frisbees, footballs or out on the water kayaking, paddle boarding, body surfing and skim boarding.  Joggers dot the edges of the shoreline in varied stages of serious (with headphones and shoes) and casual barefoot walkers simply taking in the day.   Sandpipers scamper across the sand and ghost grabs burrow and pop up from time to time.  Gulls and pelicans glide across sky in seemingly perfect formation. Umbrellas act like rainbows adding pops of color across the coastline and the fisherman patiently wait for the catch of the day.

Al with Ron, my brother in law, his happy place….

The Outer Banks may be a narrow strip of beach but it offers up a large slice of chill time that brings families together and fills up the photo album with wonderful memories.  I love this beach quote!

 “Our memories of the ocean will linger on, long after our footprints in the sand are gone.” –Anonymous 

The sun did come back out.  I sat on the beach thinking about life.  It isn’t always smooth as when the full moon casted its glow over the quiet waters the night before.  The waves can get rough when navigating a child with special needs. Especially during vacations, when they are out of their element. But I am not going to let my world with Nick close in on me.  Like the ocean that has no boundaries I plan to keep pushing out to the horizon. That is what is in my noggin this week.  Until next Monday, may your life be a beach!

~Teresa

*There is no direct origin for this phrase “Life’s a Beach. But Word Reference.com says this about the quote, “Although the expression ‘life’s a beach’ may have originated as a pun for ‘life’s a bitch’, it’s also a statement on it’s own, that life is not a bitch at all, rather, life’s a beach. It signifies that the wearer views life as a pleasant beach – sun, surf, relaxation…

Posted in Autism, Down syndrome, Fun Side of Nick

Blog #15~ Super Nick!

Posted on by Teresa Unnerstall

Blog #15~ Super Nick

“Eeeww” he says as he points down to the bathtub.

I scan the tub surface wondering what Nick is trying to communicate.  Then I see a tiny bug writhing around.  Where these bugs come from I don’t know, (maybe from inside the pipes?) I only see the creepy critters in the tub. What’s with that?  Of course I couldn’t resist turning on the faucet and torturing the defenseless thing watching it fight the swift current that led to the drain.

A few months ago I was shoring up the kitchen and again, Nick pointed at the wall next to the sliding glass window and saying “Eeeww!” There was a trail of tiny ants marching down the side of the crown molding barely seen.   I find it interesting how Nick notices everything, especially the smallest of details.  It’s near x-ray vision like Superman. 

He can scan a room and see something out of place then fix it. The last time the cleaning people came through, the kitchen table was turned at a rakish angle. (Is it just me or does anyone else have a cleaning crew that takes creative license? They are always changing the configuration of furniture or picture frames and knick knacks?) Sure enough as soon as he walked in the door Nick dropped his backpack and pushed it back to its rightful place. Just today, a birthday card fell over and he put it back up.

Later, he pointed up to the ceiling in the kitchen saying “Uh-oh!”  I look around to figure out what he is talking about and *lo and behold, one of the light bulbs burned out. Later, he saw a La Croix can in the kitchen garbage and he retrieved it and placed it in the recycle bin.   Silly things I know, but I appreciate his attention to detail.

A few weeks ago in Blog # 5 Ready, Set, Action, I mentioned how well he has been doing with unloading the dishwasher.  He knows exactly what every cabinet holds down to the last cup, bowl, plate, pan and knife and fork.  I wonder if he has been sitting at the kitchen island taking mental notes all these years while Hank was doing the unload.  The same thing goes happens with the groceries.  He loves to help put everything away and with precision might I add.

Now I wouldn’t say he is a savant by any means. He doesn’t know every single movie that won an Oscar nor what year it was or who had the starring role (like one of Hank’s high school acquaintances that has autism.) He never did obsess with lining up objects in a row.  He just seems to have a keen eye that rather fascinates me.

For as long as I can remember, object permanence has been one of Nick’s strengths.  “Object permanence is a developmental milestone that a child reaches when he or she realizes that the object exists even when it can’t be seen. The term was coined by child development expert and psychologist Jean Piaget. He studied the concept of object permanence by conducting relatively simple tests on infants. He would show an infant or young baby a toy and then cover it with a blanket. A child who had a clear concept of object permanence might reach for the toy or try to grab the blanket off the toy. A child who had not yet developed object permanence might appear distressed that the toy had disappeared.”

Let me give you an example.  When Nick was around age three we would go down to my parent’s house to visit.  Every single time, Nick made a beeline to the front bedroom, opened the toy box and pulled out his favorite, the duck musical toy.   He did the same thing at my in-laws house heading straight to the bedroom that has the stash of videos and TV/VCR and his musical toys.

When friends come over, it’s always fun to see how long it will Nick to try and grab their car keys.  You can see his watchful eye taking note of where they set them down or where a purse is put. He waits and then strikes, scooping them up as he runs to the front door pointing them at their car and pushing the red panic button.  That is actually where all this started and preceded to the bigger bang…….fire alarms!  Al and I have to hide our keys up high on the top of a kitchen cabinet. In Nick’s mind those red buttons=noise and chaos.

Interesting how the same guy that likes things in their proper place also enjoys creating mayhem. (For more mayhem check out Blog # 3~ Getting Your Goat.) His eagle eye vision can lock down on a fire alarm fast.  He looks for the opening too. That moment that you might be distracted fumbling for your sunglasses and keys is when he will make the stealthy move.  I can tell you where every single alarm is located in every restaurant and store we frequent around Aurora and Naperville. (By the way the Taco Bell on 75th Street and Rickert is fire alarm free.) The key is to do the quick scan and find them first then sure you position yourself between it and Nick. In addition, it is essential that you are no more than arm’s length from him because he is faster than a speeding bullet!  I can always expect a call during summer school about a fire alarm pull.  The site is not his regular high school but each year he remembers that there is one alarm sandwiched in between two wall mats that is uncovered. I know he has yanked that particular alarm at least three of the twenty five alarm pulls. Yes, we are holding the tally at twenty five but that won’t last.  It’s just a matter of time before he gets one (preferably not with me!)

Who me?  But  I look so innocent……

So that is what is in my noggin this week, my guy with x-ray vision and faster than a speeding bullet. Hope you enjoyed a slice of Nick’s world, the rest of us are just trying to keep up.  Until next week stay cool and thanks for reading my rants, musings and information that hopefully offers some insight about raising a child with special needs.  I enjoy your comments…. Keep ‘em coming!

~Teresa

* “Lo and behold” according to The Phrase Finder, is an exclamation, on drawing others attention to something.  It is used especially to announce things that are considered startling or important.  The phrase is often written with an exclamation mark.  Its origin comes from the word “lo” as used in this phrase is a shortening of “look.”  So, lo and behold! Has the meaning of look!-behold! It has been used since the first Millennium and appears in the epic poem Beowulf.

Posted in Down syndrome, Fun Side of Nick

Blog #12- Daddy-O

Posted on by Teresa Unnerstall

Daddy-O

Blog #12- Daddy-O

Three years ago I stood in the card isle gulping back a lump in my throat.  It was the first time I would not be picking out a Father’s Day card for my Dad.  I still miss him dearly.  He was an accomplished man, a Fulbright Scholar, chemist, sailor, and all around witty guy.  I was guided by the best.  I could always talk to him about Nick and he would quietly listen and nod. My son Nick has Down syndrome, and was later diagnosed with autism.

 My Dad and Nick….

My Dad was known to the grandkids as Paw Paw, floor time fun with Nick and his cousin, Austin…

I have been blessed to not only have the guidance and love of my Dad, but also from my Father in law.  Jim has always had my back and continues to be the rock as well as the voice of reason.

Grandpa Jim and Nick….

 Jim is know by the grandkids as GPA…..

And then there is Nick’s Dad.  Al helps me keep things on an even keel. He can lighten the mood with a joke when I take things to seriously. 

Here is Al’s perspective of being Nick’s Dad:

“When Teresa asked me to be a “guest blogger” this week, the topic was very interesting … Being Nick’s Dad.   Just to start off I’ll tell you there is never a dull moment around our house.   With Nick, the house is fully energized.  Yes he does chill but when he is on his game, you can never really relax.  Nick in “high motor” is always searching for the next thing to do, whether it’s an appropriate behavior or not.   There are things we do in our house because of Nick that most families I would gather don’t do … or for that matter would ever imagine doing.   I think back to one morning I had my boss in town and I was just running a few minutes late trying to get out the door to go pick him up at his hotel.   As I reached up on top of one of our cabinets to grab my car keys, they were intermingled with our cellphones, Teresa’s car keys and maybe a wallet.   You see, those important things stay out of Nick’s reach since he will set off the car remotes or they end up in the toilet.  Anyway, as I am trying to find my keys I grabbed whatever I could and a multitude of keys came crashing down off the cabinet nailing me right in the face.   I looked at Teresa, smiled wryly and said “I’m sure everyone has to go through this to get their car keys.”  We laughed and out the door I finally went.    That’s just a part of the functional life with Nick, we do what he have to do to get by and keep it in perspective so we can at least try to have a relatively “normal life”.  

As far as having Nick as a son, I have never experienced the range of emotions as with Nick.   We are truly blessed to have this little dude in our lives, he totally keeps us grounded.   We don’t take things too seriously or at least try not to.   If I happen to have a challenging day at work, once I get home and see Nick dancing or “going hard” (as Hank likes to say) with his iPod and headphones, those troubles totally melt away as Nick’s world does not have those trials or concerns.   Nick’s world is a simpler place and with his big ole’ smile and hugs, he makes my world a better place.   It is especially rewarding watching Nick do his work bins or when he’s vacuuming for work (or enjoyment.)  He has so much pride and wants to please so badly that when he accomplishes his task, you can see him beaming.   Teresa and I would joke about what kind of bumper sticker Nick would earn from his school.   You know the ones, “My kid is a brain surgeon at la de da elementary” blah, and blah, blah.   We just know Nick’s bumper sticker would be well earned!

I remember right after Nick was born and were told he had Down syndrome, one of my first thoughts was picturing us in our retirement years with Nick living at home with us … and you know what, I am fine with that.   I can’t imagine what my life would be like without Nick but I can assure you I would not trade a second.   It keeps getting better each day and each year.   We don’t know what the future will bring for Nick or us.  But we’ll get there when we get there.”

Al with a very low tone (a trait of Down syndrome) baby Nick….

Al and Nick (age 5) oh no, not the fanny pack again…

Al and Nick at the Lincoln Library a few years ago…

A father’s love is special.  I am fortunate to be surrounded by the best and so is Nick!   That is what is in my noggin this week.  Until next Monday may the joys, guidance and love of your Dad keep pushing you to do great things as mine has.

~Teresa

*”Daddy-O” is a slang phrase that is similar to dude. It was used by beatniks in the 1950s and early 1960s.

 One last note……You can now follow the blog via e-mail….check the bottom right side after the archives to enroll 🙂

 

Posted in Autism, Down syndrome, Fun Side of Nick

Blog #11~The Good Ole Summertime

Posted on by Teresa Unnerstall

 The Good Ole Summer Time

Driving home from Dominick’s grocery store the other day I saw a group of enthusiastic kids jumping up and down on the sidewalk in front of their lemonade stand.  It took me back in time.  I recall the makeshift cardboard lemonade stands of past and thinking we could make a fortune.  In reality we barely made enough to buy a handful of Pixie Sticks at the local Stop & Go.  Years later, Hank and my niece Courtney crafted their own while we lived outside the East Bay area of San Francisco.  Our house was located at the very edge of a dead end street.  I think they might have sold enough cups to buy a few Pokémon cards.

Hank and his cousin, Courtney in California….Lemonade anyone?

Funny how such a visual can instantly take you back.  Oh…. the good ole summer time.  I have fond memories with my older brother Tom and younger sister, Laura.  We grew up a couple of blocks from Galveston Bay in Texas.  The Houston Yacht Club (HYC) was our playground.  We called ourselves “The Three Investigators.” We spent hours there swimming, climbing over the rocks on the jetty that served as the bulkhead around the harbor and sailing the Sunfish during the week.   Friday evenings were my favorite before a race regatta weekend. Dad would haul the Ensign out and scrub the bottom of the hull while we went swimming. Mom packed the rattan picnic basket filled with homemade crispy, golden fried chicken.

The igloo cooler (with Dad’s signature marker initials “TAR”) would be chilling Mom’s potato salad the absolute best along with a sundry of Shasta soda pops.  Mom would take us to Kroger and we would each pick out our favorite flavors (10 cans for one dollar!) Strawberry and black cherry were my favorite flavors.  Laura would always choose grape and the cola while Tom always picked the odd flavors like root beer and cream soda.

Our summers by the bay:

Dad getting the boat in ship shape for race day

Mini me in 1968, with my sibs in the background…. 

Looking back, I am not sure if anything stands out in Nick’s mind. But he does like looking at photographs from the past. Nick has Down syndrome and autism.  This week, I wanted to share a slice of our summer activities over the years.  Here is a photo tour of our summer fun:

Sandbox fun in Texas…..

Pool time… Nick messing with his brother, Hank…

Cooling off on the deck..

At Monterey a great coastline…..Yes it’s summer but it can be chilly in Northern California….

Tailgating at Sox Game…

Riding the train into Chicago with Uncle Tom….”Yay, double thumbs up!”

Our boys also got a chance to spend time down at HYC.  It was nice to share my childhood playground with the both of them.  Here is Nick with Paw Paw (my Dad)……

Nick behind the ships wheel, no worries we were dockside here. 

Hank and his cousin, Sam taking in Half Moon Bay in  California

Hank flying a kite at Hilton Head Island with his Dad and Grandpa Jim.  Nick’s playing in the sand to the right….. 

Most recently, we have been going to a new spot. An island strip called the Outer Banks (OBX) located in North Carolina.  We rent a house in the town called, Duck.  There is a peacefulness and charm to this area and the Duck Fire Department is very accomadating.

Siren testing, Nick is loving it…..

We get together with Ron and Ali, (Nick’s aunt and uncle) along with their kids Anna and Sam.  At OBX we are on beach time, very chill.  We turn the knob to “Bob” our favorite radio station and let the music take us back in time while the waves wash away all worries.

Hank, Sam and Nick chilling on the beach in OBX….

Pool time at OBX….. Nick says, Life is good!

Hope you enjoyed a slice of the good ole summertime.  That’s what’s in my noggin this week.  Time to slather on the sunscreen, blow up the beach balls, spit some watermelon seeds and enjoy the fireflies dancing in the evening sky…..  Looking forward to visiting a new coastline in Oregon for a family reunion and another trip to the OBX! Until next Monday, I hope your summer memories are  sunny, warm and relaxing.

Cheers!

~Teresa

Posted in Autism, Down syndrome, Fun Side of Nick

Blog # 9~ Brotherly Love

Posted on by Teresa Unnerstall

Nick’s final exam schedule came home in the back pack last week.  I showed it to his brother, Hank who had just finished with his finals at NIU.  We both had a good laugh.

“Mom, remember my junior year of high school and those finals I had? They were a bitch!”

“How can I forget?  That one day you had a final in Trig and English.  Nick had the Blueberry Hill breakfast final.”

“Yea then the next day, it was Genetics and History and Nick’s was like Naperville River walk and shopping.  That was so pathetic!”

Each day that week, Nick got off so easy compared to Hank.  The rivalry of brothers extends past the boundaries of normally developed children.  So this week is all about brotherly love.  One question I am often asked is what the relationship is like between the two.  Rather than try to answer this I decided to go to the source, Hank.  Here is his perspective on the relationship with his younger brother.  Hank is going to be a sophomore at Northern Illinois University (NIU) and will be turning 20 next month.  The boys are 19 months apart in age.

My Brother Nick, By Hank Unnerstall:

“My brother Nick is not like any ordinary brother. There is an extra chromosome in the 21st pair which is the result of Nick having Down syndrome and later, an autism diagnosis that separates him from normal people. Having Nick as a brother has made me open my eyes to life in general and the traits that make me the man I am today.

Some of the earliest memories with Nick start from when I was around 5 years old. Being that young I did not fully understand why my brother was different but I accepted it because he is my brother.  I remember when I began getting older and going to elementary school when my mom and brother would pick me up and drop me off at school. Nick would be doing his normal sound making and hand clapping in public that would sometimes embarrass me in front of my peers. I also recall the times at the old California house we had where Nick and I would start messing around and wrestling with each other but then Nick would take it seriously and start pinching me. His ways of fighting back around that time were much less harmful than it is now when he has one of his meltdowns or I like to call them “monkey boy” episodes. These memories are some examples of tough things in which I have had to deal with in which growing up with my brother.

Hank and Nick at San Francisco Bay….

It would be remiss of me if I didn’t mention a horribly embarrassing time.   Back around my freshman year of high school, Nick and his respite worker and I all went to Arby’s for a late lunch. Once we got our food we sat down, Nick started to make loud and disgruntled sounds when we put his food in front of him. I told him to be quiet in a not so nice tone. Next thing you know he became furious and proceeded to throw his food and random objects like trays, sugar packets and salt shakers all over the place.  We tried to calm him down but he was at the point of no return (aka monkey boy.)   I went on to restrain him and he was pinching, kicking and biting, anything to hurt me.  Somehow we ended wrestling around on the ground and to the other people in the restaurant it must have looked like we were fighting.  This was awkward and embarrassing for me because I was much bigger than him.  I knew it didn’t look right. I just wanted to leave and never show my face again.

That was the worst, or well at least one of them!

 But, there are many traits to Nick.   For example, he is usually a very happy and silly kid who always has a grin on his face. That’s why people love him at school and of course our family despite what we deal with when relating to Nick. Also, even though Nick has autism it does not stop him from being a socially engaging little dude even though he can’t speak. He loves to get attention whether it is him trying to act cute or to negatively do something to get ours. For example if we do not pay Nick any attention for a while he might spray shaving cream over the stairs.

Some of the best memories I can recall having with my brother can be the times where he will just sit next to me on the couch and watch TV with me and just chill out. Also I love to see him dance intensely while listening to the music that I provide him which is usually hip-hop/rap. Basically whenever Nick is in a good mood and happy he always knows how to put a smile on myself and many others faces. Having Nick as a brother has taught me to be a very patient person. I think I got this trait from the numerous times I have had to babysit Nick throughout the years. Also I feel that I have a certain outlook on life after growing up with Nick. For instance, Nick is always happy about the smallest things and he’s the one who is mentally disabled. So how I’ve been trying to live my life is to the fullest and I’m always trying to be as positive as possible no matter what life throws at me.”

Hank and Nick at the Sox game this past weekend……

Oh how they have grown up since the days of past when they use to play sweetly on the living room floor.

My Dad always said they looked like innocent cubs wrestling on the ground…..one more…. 😉

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Those peaceful days long faded as Nick became more frustrated…..giving way to huge meltdowns as he became older.  I applaud Hank putting up with the challenging behaviors of having a brother with not only Down syndrome but also autism.   We did our best to provide support by taking him to sibling workshops along with having him read “The Sibling Slam Book” by Don Meyer.  This is an excellent resource of what it is REALLY like to have a brother or sister with special needs.  We carved out time to just spend with Hank (buddy days) so he wouldn’t feel like Nick, Down syndrome and later autism didn’t consume our family.  I am very proud of Hank and his relationship with his brother.

It has been a crazy, twisted road we have been on but let me just say this….While the sibling relationship takes on a different form with a special needs child, there is no doubt that the bond is there.  I wish that Hank and Nick could have conversations, play video games and throw a baseball like most brothers do.  But that was not meant to be. One thing for certain is that there is a connectedness and love between them.  Last fall Hank took off for NIU. How did I know that Nick missed him?  He walked around with this picture in his hands, never letting it go even as he used the bathroom 🙂

Brotherly love is evident.  That is what is in my noggin this week.  Until next Monday, may your short week be full of love and connections spoken or unspoken.

~Teresa

***Special thanks to my son, Hank my guest blogger extraordinaire 🙂

 

Posted in Autism, Down syndrome, Education and Special Needs, Speech and Occupational Therapy

Blog #8~ Three Scary Letters: IEP

Posted on by Teresa Unnerstall

Blog #8~ Three Scary Letters: IEP

Who would think that the 3 letters IEP could evoke anxiety and trepidation in the hearts of many parents of children with special needs?  IEP stands for Individualized Education Plan.  I used to be one of those scared and frail kittens shaking as I walked into the doorway.  My son, Nick has Down syndrome and autism.  I’ve been through my share of IEP meetings and learned a great deal on how to handle them.  I heard my share of war stories:

“Watch out they will try and get away with cutting your service hours!”

“Why would they do that?”

“Oh the budget constraints and pressure from the school district, that’s why. They are going to say the teacher can address the issues and you don’t need the additional speech therapy hours.”

So enter the neophyte parents into the doorway to face the army of personnel from the school.  The IEP team usually consists of the classroom teacher, case manager, occupational therapist, speech therapist, adapted PE teacher, school counselor, social worker, school nurse and a student services representative. Oh and yes, the parents too. 🙂  I can recall many in the early days crammed in tightly around a table and feeling very clueless in the early days.   The IEP meeting is intended to be a team effort, but sometimes we couldn’t help but feel like it was them against us.

What an IEP exactly?  Here is some information from Wikipedia:

An IEP is designed to meet the unique educational needs of one child, who may have a disability, as defined by federal regulations. The IEP is intended to help children reach educational goals more easily than they otherwise would.  In all cases the IEP must be tailored to the individual student’s needs as identified by the IEP evaluation process, and must especially help teachers and related service providers (such as paraprofessional educators) understand the student’s disability and how the disability affects the learning process. 

The IDEA 2002 requires that an IEP must be written according to the needs of each student who meets eligibility guidelines under the IDEA and state regulations, and it must include the following:

  • The child’s present levels of academic and functional performance
  • Measurable annual goals, including academic and functional goals
  • How the child’s progress toward meeting the annual goals are to be measured and reported to the parents
  • Special education services, related services, and supplementary aids to be provided to the child
  • Schedule of services to be provided, including when the services are to begin, the frequency, duration and location for the provision of services
  • Program modifications or supports provided to school personnel on behalf of the child
  • Least Restrictive Environment data which includes calculations of the amount of time student will spend in regular education settings verses time spent in special education settings each day
  • Explanation of any time the child will not participate along with nondisabled children
  • Accommodations to be provided during state and district assessments that are necessary to the measuring child’s academic and functional performance
  • The student should attend when appropriate. If the student is over 14 they should be invited to be part of the IEP team.
  • Additionally, when the student is 16 years old, a statement of post-secondary goals and a plan for providing what the student needs to make a successful transition is required. This transition plan can be created at an earlier age if desired, but must be in place by the age of 16.

IEPs also include other pertinent information found necessary by the team, such as a health plan or a behavior plan for some students.

The IEP can be daunting on paper, or shall I say more like a ream of paper averaging for Nick around 50 pages total.  The biggest tip I can share is to request all of the reports and intended goals prior to the meeting for your review.  In addition, I suggest meeting with the case manager at least a month before the meeting to discuss proposed goals that will be in the education plan.  That way there are no surprises at the IEP meeting.  If the parent and teacher have a good communication system back and forth there shouldn’t be any.  (For additional support, go to the links and resource pages on this website and look under Wrightslaw, Bridges for Kids-IEP goals and Barb Bateman’s book, Better IEP’s.)

Over the years we have utilized outside advocacy when we felt like the needs of our son might be compromised.  Rewind to 1998 in Houston, when Nick was attending a public pre-school program twice a week and a private special needs pre-school three days a week.  (This was before we could get him in the private school full time). We brought an entourage of very strong women from the private school to advocate for Nick.  Our advocates dissected that IEP and insured that all supports were in place down to the last detail.  That being a nubby rubber cushion for Nick to sit on to keep his core activated and him alerted.  I was floored at the way they spoke up for our son.  I would have never known to boldly ask for these things.

Nick at The Arbor School in Houston, Texas……

The presence of an outside advocate walking in with you at an IEP meeting can certainly make the team members sit up and be on point.  Memorable meeting number two was in 2001 when lived in the east bay area of Northern California. Nick’s language was minimal and he was getting frustrated not being able to communicate verbally.   On this particular occasion we were being met with resistance with regards to the school providing a proper picture communication system and training of staff and parents.  Enter the Executive Director of The Down syndrome Connection by our side.  (DSC is the local Down syndrome support group)  The school’s Physical Therapist asked if she could report first as she had another meeting to attend.  The Social Worker raised her hand and asked if she could go second and then excuse herself.

Without blinking an eye,  the DSC Director calmly said, “Wait a minute, we are all here to discuss Nick’s future, right?  We only have this meeting once a year. The least you can do is stay and be a contributing member to this team.”

No one dared to leave that meeting.  Oh, and yes the communication specialist was immediately put in place to help with the picture communication system for Nick.

Nick in California

There is only one word for these advocates and the others that followed…..Rock Stars!

I have learned from the best.  The frail kitten morphed into a lion that can roar.  Why, because I have to fight for him because he has no voice. I know Nick the best and what works for him.  I don’t have to agree with the team.  In my matter of fact approach I simply state my parent concerns and have them put in writing in the IEP.  So parents, if you don’t agree, then push your chair back, state that you don’t agree and do not sign it. You may have to take it to the next level if you get a push back.  That’s when you use the two words that can evoke the most fear…Due Process!  (Thank you Kendra, Nick’s Private Occupational Therapist for giving me the courage to do these things.)

Nick at private occupational therapy with Kendra

More fun with Kendra

And please, do not call me “The Mom”, or “Nick’s Mom.”  The name is Mrs. Unnerstall.  Yes, IEP meetings can be scary.  But parents, don’t be fraidy cats.  Just get prepared!   Request those reports and goals ahead of time.  Schedule a meeting with the case manager before hand to make sure you are on the same page.  Communicate with the teacher so there are no surprises.  And finally if you don’t feel supported, then bring an advocate to the meeting.   That’s what is in my noggin this week.  Until next Monday, may you find the inner lion within you and fight the good fight!

~Teresa

 

Posted in Down syndrome

Blog #7 Mama Mia

Posted on by Teresa Unnerstall

Mother’s Day circa 1969, my brother Tom and younger sister Laura and I get up and make breakfast for our Mom.  It takes us at least 3 or 4 tries and subsequent tosses of undercooked and burnt pancakes into the trash. But finally we get the griddle just right and pull off a couple of edible ones.  The tray is prepared with orange juice, her favorite strawberries and a small, clear vase filled with bright orange pomegranate flowers from the tree on our backyard patio.  This year I had made a gift at school that I was especially proud of.  I found the most perfect brown conch seashell and stuffed the opening with cotton and covered it in red velvet to make a tiny pin cushion.  This was my favorite gift I had ever given my mom.  Oh how proud the three of us were for our accomplishment.

As a mother of two boys, I think back on what were my favorite presents.  Without a doubt it was the special gifts and handmade cards they each made at school over the years.  I still use the recipe box that Nick made in preschool with a picture of him clapping on the front of it. Hank handcrafted a colorful ceramic bowl that I treasure. Seeing their faces so proud is perhaps one of the greatest gifts of all.

Over the years I have been asked often on what it takes to be a mother of a child with special needs. In many ways it is the same as for a typical child but it takes a greater amount of time, energy and perseverance. Milestones are not met and checked off the chart at the yearly physicals like a typical child. A large chunk of the schedule is carved out for working with your child at home and taking them to physical, occupational and speech therapy. Having my son, Hank just 19 months older gave me a good idea of what the benchmarks were supposed to be.  However, I realized quickly that Nick was going to do things in his own time.  Nick’s time was much slower than a snail’s pace.

Nick ( 2 months old) with Grandma Babs

Let me pause and offer the quick facts about Down syndrome. Wikipedia  states that “Down syndrome  also known as trisomy 21, is a chromosomal condition caused by the presence of all or part of an extra 21st chromosome It is named after John Langdon Down, the British physician who described the syndrome in 1866.  The incidence of Down syndrome is estimated at 4.6 per 10,000 births. Often Down syndrome is associated with a delay in cognitive ability and physical growth, and a particular set of facial characteristics. The average IQ of young adults with Down syndrome is around 50, compared to normal children with an IQ of 100. A large proportion of individuals with Down syndrome have a severe degree of intellectual disability.

Nick with his brother Hank, with his low muscle tone we constantly had to prop him up for pictures.

Individuals with Down syndrome may have some or all of the following physical characteristics: microgenia (an abnormally small chin)[ an unusually round face, macroglossi (protruding or oversized tongue), an almond shape to the eyes caused by an epicanthic fold of the eyelid, upslanting palpebral fissures (the separation between the upper and lower eyelids), shorter limbs, a single transverse palmar crease (a single instead of a double crease across one or both palms), poor muscle tone, and a larger than normal space between the big and second toes.

Brushfield spots are the tiny flecks that shine in the iris. One of the characteristics of  some individuals with Down syndrome. By the way Nick grabbed the camera and did his own self shot here 😉

Health concerns for individuals with Down syndrome include a higher risk for congenital heart defects, recurrent ear infections that may lead to hearing loss, obstructive sleep apnea, thyroid dysfunctions, and obesity.”

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Here is how Nick fit with his development:

Crawling- Average age= 14 months (range 9-19 months) / Nick= 24 months.

Sitting while supported with own arms- average age= 8 months (range 5-15 months) / Nick= 12 months.

Eating solids-Average age= 8 months (range 5-18 months) / Nick=40 months

Walking independently-Average=23 months (range 13-48 months) / Nick=40 months.

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Nick at age 9 months with Grandpa Jim. He still looks like a rag doll….

While Nick developed much slower than the averages above, he did hit the marks and this proud mama can still taste the sweet victories of each glorious triumph!

Yay, he is sitting up supporting himself with his arms at age 1!

Who would have ever predicted that the low tone boy with wobbly legs that didn’t take off walking until 3 ½ years would run like a cheetah and win a silver medal at the Special Olympics in the 100 yard dash. And the year before, in fifth grade he became a state gold medalist in the softball throw down in Bloomington.  Nick never got the significance of his medals.  He was more excited about standing on the podium and dancing side to side as they played the Special Olympics music theme on a portable jam box.  On the other hand, I was snapping photos like a crazed paparazzi photographer. 😉 He fought hard as we pushed him constantly for 12 years….. and look he won……Oh *Mama Mia!

State Special Olympics Gold Medalist!

Up on the top of the podium, taking a bow!

That’s what is in my noggin this week.  Until next week, may the milestones you strive for and meet be the sweetest of victories :).

~Teresa (aka Mama Teresa)

*Mamma mia (literally “my mother”) is an Italian interjection, used in situations denoting various kinds of emotions of surprise, fear, rejection, and joy.

Posted in Autism, Down syndrome, Speech and Occupational Therapy

Blog #6 The Nick Connection

Posted on by Teresa Unnerstall

Once upon a time, Nick only had Down syndrome.  I am unable to say with any certainty when the light switch flipped.  The symptoms of autism didn’t appear after any round of immunizations or before the age of 3.  In fact there were many symptoms that Nick didn’t have.

Autism is defined by the Mayo Clinic as, “One of a group of serious developmental problems called autism spectrum disorders (ASD) that appear in early childhood — usually before age 3. Though symptoms and severity vary, all autism disorders affect a child’s ability to communicate and interact with others. Children with autism generally have problems in three crucial areas of development — social interaction, language and behavior. But because autism symptoms vary greatly, two children with the same diagnosis may act quite differently and have strikingly different skills. In most cases, though, severe autism is marked by a complete inability to communicate or interact with other people. Some children show signs of autism in early infancy. Other children may develop normally for the first few months or years of life but then suddenly become withdrawn, become aggressive or lose language skills they’ve already acquired.”

Nick has always found a way to connect with people.  Years ago, when he was around 2 years old, a woman approached me in the local Kroger supermarket.  She went out of her way to tell me how good Nick’s eye contact was and how engaging his personality was.  Countless doctors, therapists and teachers have made the same recognition over the years since then. He thrives around people and having fun with them.

Being silly pouring water on Grandma Babs

Fun with his Dad and brother, Hank

As I mentioned earlier, there was no flip of the switch.   A few things stood out around the age of 4. At the time, we lived in northern California. He started rocking more back and forth and became increasingly intolerant of having his hair cut.  Then there was the trip to Half Moon Bay where he began to pinch his cheeks hard as we walked across the coarse grain sandy beach. I suspected these behaviors were sensory related.  To make sure all the bases were covered I took him in to be evaluated for autism at age 5.  The Mayo clinic states that, “Though each child with autism is likely to have a unique pattern of behavior, these are some common autism symptoms:  

Social skills

  • Fails to respond to his or her name
  • Has poor eye contact
  • Appears not to hear you at times
  • Resists cuddling and holding
  • Appears unaware of others’ feelings
  • Seems to prefer playing alone — retreats into his or her “own world”

Language

  • Starts talking later than age 2, and has other developmental delays by 30 months
  • Loses previously acquired ability to say words or sentences
  • Doesn’t make eye contact when making requests
  • Speaks with an abnormal tone or rhythm — may use a singsong voice or robot-like speech
  • Can’t start a conversation or keep one going
  • May repeat words or phrases verbatim, but doesn’t understand how to use them

Behavior

  • Performs repetitive movements, such as rocking, spinning or hand-flapping
  • Develops specific routines or rituals
  • Becomes disturbed at the slightest change in routines or rituals
  • Moves constantly
  • May be fascinated by parts of an object, such as the spinning wheels of a toy car
  • May be unusually sensitive to light, sound and touch and yet oblivious to pain

Of the symptoms listed above, Nick displayed none in the social skills category.  The physician noted that his slow speech development was probably due to having Down syndrome and Verbal Apraxia (a neurologically based condition that is characterized by difficulties planning and producing the complex set of oral movements necessary for intelligible speech. For more information on Apraxia click on my favorites section, a new book, Speaking of Apraxia- A Parent’s Guide to Apraxia of Speech by Leslie Lindsay has just been published.  Regarding behavior, Nick did exhibit a few of the symptoms but never was fascinated with spinning any objects or sensitive to light or pain.  So cut to the chase, after the screening the conclusion was he did not have autism.

Fast forward 6 years later, his speech hadn’t improved and the behaviors were growing more severe.  Nick’s speech was limited.  Imagine someone putting duct tape across your mouth and trying to navigate the world.  With no voice he would get frustrated and turn to throwing such things as a chair across the room or breaking a glass across the floor.  Worse yet, he would have meltdowns that drew blood and bruises when he would pinch, kick and bite. At Gi Gi’s Playhouse group time (a local Down syndrome support group,) I began to notice that he was playing more by himself and primarily with any musical toy he could get his hands on dancing side to side.

This was more than just Down syndrome.  Next stop Little Friends Center for Autism.  The second screening was much more comprehensive and included a team of therapists who individually assessed him.  Voila, diagnosis confirmed.  I can say first hand that the evaluation methods had improved tenfold.  I suspect that is one of the reasons why the incidences of autism cases have risen so significantly over the past five years.

So back to the Nick connection, because he has always been highly social it was hard to see that somewhere in the midst autism had crept in.  The tapping, rocking, hand flapping, humming and the sounds of musical toys had become white noise to us like the dryer running in the background. We had become immune to them all. To us he was the guy who won over the hearts of everyone he touched.  He was the fun guy who can click with everyone. When he was much younger he had a belly flash club.  He wouldn’t see his Aunt Laura or my friend Sally for months and yet when he would reunite he greeted them by lifting his shirt up and flashing his belly.

Nick getting ready to belly flash!

He likes to give a high five, rub elbows, noses and he loves to get raspberries. Oh and let me not forget the burps, fake sneezes and what we like to call “force farting” to get your attention. For that I am grateful, well maybe not the force farting (Al’s term given for when Nick pushes out one to get a rise out of us) 😉 but I am glad he is so engaging.  And I have to say those who know Nick can attest to the fact that he can replicate exact sneezes after you do yours. Even Aunt Ali’s tiny, high pitched achoo!

Elbows… with his teacher, Rob

Noses…

The fact that he can make those connections warms my heart as his mother.  That’s what is in my noggin this week, until next Monday….May you find those special ways to connect with those around you!

~Teresa