Posted in Autism, Down syndrome, Education and Special Needs

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

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, Feeding, Personal Hygiene, Toileting, Speech and Occupational Therapy

Blog #18~ A Cut Above The Rest

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 church goers 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.

Sargent Nick ready to report for duty……

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 to 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.  Would getting a straitjacket be out of line? 😉    Then, there was another area of hair removal to be addressed. He was starting to grow facial hair! Aaaaaaaaaaaaaaaahhhhhh!

Now it was already impossible to give him haircuts and clipping his toenails was no walk in the park either.  (I don’t know what it is but I swear that extra 21st chromosome called Trisomy 21 is the cause of kids like Nick having really tough toenails.  I usually wait until after 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 moustache area.  We found the roller top razor worked much better than the rotary one.

Mr. T rocks…..

Look at big guy shaving……

He is in the shaving zone…..

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, can you say scrappy do? 

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 him 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. The other thing we changed was to cut his hair first thing in the morning before he has been 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 everyday 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

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…