Author: Teresa Unnerstall

Teresa is the author of "A New Course: A Mother's Journey Navigating Down Syndrome and Autism" and the mother of two boys. Her youngest son, Nick is 30 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). Teresa's passion is helping others understand and navigate co-occurring Down syndrome and autism. She is a DS-ASD consultant, advocate, nationally known speaker, and author. Follow Nick on Facebook, Instagram & Pinterest @Down Syndrome With A Slice of Autism and on Twitter @tjunnerstall. For more information, media links, and booking Teresa for a speaking engagement visit https://www.teresaunnerstall.com
Posted in Autism, Fun Side of Nick

Blog #13~Take 1, Take 2, Take 3…. oh just keep snapping!

Posted on by Teresa Unnerstall

Over the years, the process of getting a clean shot of Nick in a photo has never been easy.  Three things have to happen.  First you have to get him to look into the camera with eyes fixed and not flat.  Then, catch his smile.  Oh and while along try to keep his hands from flapping around his ears.  Nick when excited about something can do some serious flapping…..

Yes I can…

“It’s my brother’s birthday I’m gonna flap if I want to… Happy Birthday Hank!

Most of the family photos appear angelic as we have our arms coiled around him lovingly.  Actually this is a desperate attempt to control the hands flapping!

Unnerstall Family photo….

I love getting the Christmas cards from our fellow dual diagnosis friends and their families.  It is always a mirror image of those wrapped arms that appear to be peaceful and in control. Oh wait there are more……….

Mom and I trying to get Nick to look at the camera for a Rodger’s Family photo…

Oh what a sweet picture of Jim and Theresa with the grandchildren… note the gentle holding of Nick’s hands while calmly looking into the camera….

Mount Diablo in Nothern California… Their faces say it all…

“I know that all my cousins are looking straight ahead at the camera, but  I am look away Nick!”….

Poor Hank, I can’t tell you how many pictures he and  our family have endured  patiently sitting and smiling while waiting for Nick to maybe look into the camera and smile.

Nick says…”Who needs Santa, this hand flap is way better.”   Gotta love Santa’s gaze at him.  

How many school pictures of Nick have been re takes?  Uh ya… all of them!

We call this one “Off-Centered Nick” but it’s a rather cute shot (2nd grade)

Which brings us to senior portrait time, oh my.  A lot has changed since my high school days back in La Porte, Texas.

Back then, they only offered two shots. (That sounded like an old person speaking didn’t it?)  I remember being bummed that we didn’t get to do the pose like Mom had.  Even the graduating classes two years before me did.  You know the one with the fluffy white feathers that hit just above the bare shoulders.  I couldn’t wait to see myself  like this….

Mom rocking the feathers…

My ’79 graduating class got stuck with the casual street clothes look,  fake green ficus creeping over the background  and a lame tree trunk covered with lichen. Not quite the same is it?

The second shot was the with the conservative gray background and traditional cap and gown.  These days it is a complete photo shoot with multiple backgrounds and wardrobe changes including props such as a band instrument or sporting equipment. Which leads this story to the present tense and Nick who had his senior portraits taken last Friday.

Several things need to happen to pull such a feat off.  First besides the top three items that I listed above is timing.   I made sure to block an hour shoot rather than 30 minutes to allow for Nick to transition and in case he needed a break.  With Nick’s hair that grows like Samson……  timing is everything. Oh and the stars need to be in alignment.

This would be too late…..

So, we arrive at the studio complete with my bag full of things to try to get Nick to look at the camera. And the task strip that had icon pictures of camera, smile, wait, smile, all done and then of course the big reward at the end…. ta da!

Double thumbs up.. yes!!!!!!!!!!!!!!!!!!

I told the photographer that he had a limited number of money shots.  Just keep snapping… and he did. Between the photographer, Hank and I engaging in countless sound effects, silly toys like whoopie coushins, fake burps sounds, slap stick humor and yes…..two wardrobe changes and five different backdrops we might just have a few keepers.   We’ll see how the film rolls in a few weeks.  Funny how such a simple thing like having your photo taken can be such a process and wear on you and your whole family.  These things are never easy with Nick.  But somehow in the midst, there usually is a nugget you take with you.  It’s a tiny bit that stays in your memory bank that brings a snicker and smile…..

That’s what is in my noggin this week. Until next week may you find those little nuggets of happiness and say cheese…..  and don’t forget to flap your hands!

~Teresa

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, Behavior/ ABA, Fun Side of Nick

Blog # 10 Nano Second!

Posted on by Teresa Unnerstall

Last Friday, Nick and I celebrated the end of school with a trip his favorite eatery, Taco Bell.  I like the one off 75th street in Naperville because there are no fire alarms in site for him to grab.  Yes, Nick has an obsession with fire alarms.  Since 3rd grade he has pulled 25 of them total.  For the record he has only got me twice and it only took a nanosecond!  Nick is always looking for the opening, that one moment when you aren’t paying attention.  That is the instant when he will strike.  The first fire alarm pull on my watch happened as I was fumbling to get my keys out of my purse.  He lunged across my body and clawed at the alarm before I could even try to block him.  Yes he’s that fast!

The object of his envy…..

So back to Friday lunch, I was glancing at the menu board to find something remotely low calorie when Nick grabbed a set of keys that a man in front of us had set down on the counter next to his newspaper.  Just before he pushed the red panic button on the remote I scooped them up.  Mom 1, Nick 0!

If you are around Nick for any given period of time you develop razor sharp reflexes. Let me put a lens on this. Here is a series of encounters that happened just this week.  On Sunday, my husband Al left Nick inside while he rolled up the hose reel. In merely two minutes he came back into the kitchen where Nick had wildly ransacked the refrigerator leaving the door wide open.  He had pulled out several things including two bottles of salad dressing.  The ranch dressing rested on the island with the cap off and was only spared because it was nearly empty.  Clearly, that wasn’t satisfying enough. But the full bottle of Asian Sesame was wrapped between his hands, turned upside down while he stood there choking it like a chicken as the rose colored liquid drained onto the floor.  Nick 1, Al 0!

A few days later while rolling the garbage cans halfway down the driveway Nick thought it would be funny to push the garage door button (again with the buttons!)  I stopped short in my tracks sprinted back and ducked under with my heart pounding just before I got locked out of the house.  I won that round, barely!

On Thursday we had a nice visit with Rob, a former teacher/respite worker.  Incidentally, Rob carries the esteemed title of being #20 on the fire alarm pulls.  About halfway through our visit I began to hear the sound of running water from upstairs.  Moments later the pitter patter of Nick’s footsteps followed by what I can only describe as a dastardly laugh  as the vein popped out of his forehead.   Clearly he was delighted. Rob offered to go upstairs and see what was going on.  As he came around the corner back into the kitchen he stood there holding his flip flops which he had politely left by the front door. They were dripping wet!

Nick and Rob….

Oh and let me not fail to mention that Hank left his bathroom door unlocked. I had just mopped the floor…. Cue the sound of the glug, glug….glug of Crest Fluoride rinse spilling over the banister.

A few hours later… as I put the finishing touches on the master calendar…. I might have left my pen out while I put of load of clothes in the dryer….uh oh…Nick inserted his intents…

Which brings me to Saturday, what more can he possibly do?  Nick is crafty and as I mentioned before he is always looking to find your weak point.  On this particular morning I was trying to get ready to go teach a step aerobics class.  While upstairs getting ready, Nick was in the kitchen pushing the popcorn button on the microwave followed by the intercom button on the phone.  A few minutes later in the midst of putting on my lycra spandex he made a nice Jackson Pollack design using toothpaste which he squirted in a swirling and splattered pattern from the second floor….(yes, the usually dumping spot, I am thinking of putting a plastic baby pool down any day now.) Thinking that I was staying one step ahead of him I carried my coffee with me into the closet while I changed.  However I accidentally left the mug there as I went back into the bathroom and bam, that is when he emptied it out onto the collar of my warm up jacket.  Nick 4, Mom 0….

This is going to be a long summer!

Even with the cabinet door locks back on he still manages to find ways to dump.  His goal is always trying to get our goat (see blog # 3 for more of Nick’s shenanigans.) He is *nano second fast and he will get you. I would love to hear any fun stories you have of Nick pulling one on you.  Send me your experiences with Nick and I will write a follow piece with all of your perspectives. Please e-mail your encounters with Nick to tjunnerstall@comcast.net.

There are no lessons to be learned or wise words to offer this week, except to say that I know better. I should have found something for him to do while I was busy in my realm.  So this week I simply want to offer a slice into Nick’s world….the rest of us is just trying to keep up.  That’s what is in my noggin this week.  Until next Monday, may you be on point and razor sharp as you take on the week ahead.

~Teresa 🙂

* Nano Second according to Answers.com is One billionth of a second. Used to measure the speed of logic and memory chips, a nanosecond can be visualized by converting it to distance. In one nanosecond, electricity travels approximately a foot in a wire. Admiral Grace Hopper was famous for handing out strands of “telephone wire nanoseconds” to her audience whenever she lectured about technology. Holding the wire turns the unreal concept of a billionth of a second into reality.

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…. 😉

.

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

Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Education and Special Needs, Tech Stuff/Apps and Video Based Instruction

Blog #5 Ready, Set, Action!

Posted on by Teresa Unnerstall

“Wash… wash…wash,” I hesitated going into the other room in fear of what Nick might be doing.  Would it be my fitness shoes in the sink under the faucets running full blast yet again?  To my surprise, I went into the laundry room to witness him taking the dirty clothes off floor and one by one plunking them into the washing machine and with each one saying the word wash!  It hasn’t just been the laundry either. For the past year, he has step up in other household chores.  Trying to get his brother, Hank to unload the dishwasher was like trying to pull teeth.  But Nick completely enjoys his role that he took over since his brother left for college last fall.  Everything has its place and his careful eye has taken note over the years.  He proudly puts every cup, plate, pot and pan along with the stemware carefully in the cupboards.

A few months ago I packed away the last of the Christmas ornaments and decorations and pulled out the vacuum to clean up all of the needles that had fallen on the carpet. I plugged the cord in and turned around to see Nick with his hand on the handle.  He was ready to take it on!  Much to my surprise, he not only navigated it but held the cord appropriately off to the side and did a nice job running the vacuum across the carpet.  I knew he was doing this for his school job at the elder care home but had no idea how well he was performing.

I have to give all of the credit to the staff at his high school.  Mrs. W brought in Northern Illinois University (NIU) to do a study that was done on six of her students last year.  The abstract was about maintaining vocational skills of individuals with autism and developmental disabilities through video modeling.  Research has shown that using video modeling helps to promote independent work-related behaviors and decrease the reliance on staff.  Video based supports often result in fostering independence and generalization of job related skills.  This means there is less reliance on job coaches and co-workers all for which are critical for sustaining competitive employment.  It is like a script in that breaks down the tasks that need to be performed.  These short videos are narrated in the background with short verbal prompts.  Nick watched them every day for two weeks and then each time before he was to perform a particular task. In the case of the NIU study the videos were for loading the dishwasher and washing machine.  What I noticed immediately is that Nick enjoyed watching them over and over again.  They are much more effective than any task strip that he has always used in the past. Here is an example of a task strip:

For me the proof is in the pudding*.  I noticed a significant increase in Nick initiative and accuracy in helping out around the house.  The videos did in fact increase his generalization to doing other chores besides these two.

While the jobs are pretty basic for most people, for Nick they mark a milestone.  His goals are no longer academic in nature for the most part they are all functional.  Functional goals are non-academic and generally understood to refer to skills used in the context of routine activities and daily living. Anything he can do independently gives him not only a better chance at getting a job upon graduation but also a placement into a group home someday.   Right now, he also has many other jobs at school including shredding, washing windows, loading the dishwasher, recycling and washing clothes for the PE department.  This week we have his annual IEP meeting to discuss his progress and goals for his senior year of high school.  As I look back it is amazing to see the progress he has made given his disabilities.  At this rate, I am going to be able to give him the reigns around the house while I sit back on the couch, prop my feet up and eat bon bons!  That is what’s in my noggin this week.

*Origin of Proof is in the Pudding

Proof in this case means “ultimate test.” To “prove” used to mean to test, a meaning which survives in a limited number of usages. This is one: it literally means you can show me a wonderful recipe, and tell me about your fine ingredients, but ultimately, the test is in the thing itself, the actual results.

 

Posted in Autism, Down syndrome, Fun Side of Nick

Blog #4 Happiness is….

Posted on by Teresa Unnerstall

Happiness is……….

In the Peanuts cartoon, happiness is a warm puppy.  In Nick’s world happiness comes in the most surprisingly simple ways.  While it would be nice if he could tell me what makes him happy it isn’t really necessary.  You can read it all over his face.  His smile is infectious and radiates through his big almond shaped eyes that twinkle while his eyebrows arch upward and the vein across his forehead pops out.  While my fingers dance across the keyboard writing this entry, I look over to see that exact look as he watches the famous flatulence scene in the movie, The Nutty Professor.  Oh jeez boys, farting and burping…. more on this in another blog entry…..

I think back to my youth and the things that made me happy were quite simple.   Mom packing my favorite lunch, a tuna sandwich, crunchy Cheetos and Little Debbie Swiss Cake Rolls tucked inside the brown bag that she stapled at the top.  Swimming and getting a Mr. Pibb out of the coke machine for .15 cents at the Houston Yacht Club always made me happy.  Much like me, Nick loves swimming, soda pop and Swiss Cake Rolls.

As an adult, happiness is the treasured time filled with the greatest of love from family and dear friends, digging in the garden, dancing,  having my cat snuggled on my lap and hitting those fuzzy yellow tennis balls.  Those are a few of the things that feed my soul along with watching my dancing machine…….who comes by it naturally….

And oh how he loves tennis balls too….

Regarding tennis balls, he seeks them out often and taps them rhythmically on his mouth.  Sometimes that seems to be all he needs to be content.  Besides tennis balls, Nick is constantly stimming with all sorts of odd things.  The term “stimming” is shorthand for self–stimulation.  It refers to a repetitive body movement which stimulates one’s own senses such as rocking, spinning, tapping or hand flapping. It has a function related to sensory input.    Each of us during the course of a day engages in some type of behavior to rev ourselves up. How many times have you been sitting and trying to pay attention and your feet or legs are either rocking or bouncing?  What about twirling your hair?  While Nick’s behaviors may stand out more they both serve the same function.  They are all ways we are trying to alert are senses.

This is an excerpt from a report by Kendra Convery, Occupational Therapist who evaluated Nick when we lived in California twelve years ago.   “Nick’s sensory system requires high intensity and duration experiences to meet the sensory threshold.  For this reason, his engagement in sensory activities in these realms often becomes more repetitive and all-encompassing.  In addition, it seems, at least in part that many of his behaviors are an attempt to create sensory input that is organizing for him.  For example, the calming effects of watching visual stimuli appear to slow down his body and calm him.”

Not all children with sensory processing problems actively seek out more at all times.  In fact, the threshold can be much the opposite. Too much stimulation or noise may be overwhelming and supports must be put in place to control the environment.  On the autism spectrum the pendulum swings both ways. It is not just the movement but the visual as well. More on this in another blog entry in the future… now back to happiness according to Nick…

Nick looks at the world in many colorful and shiny ways and always with hand flapping by his ears… Here he is watching the movie Babe and seeing a very cool reflection….

For years he would actively seek out anything in a blue bottle like Windex as his new set of lenses.  He would turn it sideways and hold it as he peered through like it was a pair of binoculars.  These days all bottles of fluids are locked behind the newly minted child proof locked cabinets.  Yet he still manages to find something else to look through.  He is quite resourceful that way.

I love Nick’s sense of humor. He finds joy in the silliest things like watching funny cats or people sneezing on a YouTube video. Yes, you can find anything on YouTube (thanks to Brian S. – Nick’s Speech Therapist for the sneezing hook up!)  And playing practical jokes while I am trying to cook….

Ooooh nooooo Woody……Hardy har har, Nick!

As his Mom, there is no greater joy then to know that he is content and happy. He is engaged in our lives and full of spunk. What more could I ask for?  One sure thing to seal the deal is to make a run to the border.  We pull up and Nick pumps his fists with two thumbs up, saying “Taco Bell” pitch perfect!   In that moment, life is as good as it gets. Simply put,  happiness according to Nick.

That is what is in my noggin this week.  May you find the simple, shiny, colorful and tasty things in your week that make you want to do a happy dance!

~Teresa