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, Dual Diagnosis Down syndrome and autism, 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 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 Autism, Behavior/ ABA, Down syndrome, Education and Special Needs

Blog #3~DS-ASD, Getting Your Goat

Blog #3~DS-ASD, Getting Your Goat

  • Eggs
  • Celery
  • Balsamic vinegar
  • Olive Oil
  • Parsley
  • Fajita seasoning
  • Merlot
  • Penne pasta noodles
  • Laundry detergent
  • Acne wash
  • Fluoride rinse
  • Shaving cream
  • Whey protein powder
  • Shower gel
  • Hand lotion
  • Baby powder

That’s the short list and I don’t mean grocery list.  It is just some of the stuff that Nick has gotten his hands on and dumped out on the kitchen floor. I wish I could say that I am rewinding to back when Nick was age six.  But this is the here and now; the flavor of the week (or in this case for the last year or so.) Nick is 18 years old with a dual diagnosis of Down syndrome and autism.  This makes for an interesting mix of behaviors.

I have consulted teachers, therapists and behavior specialists in autism.  After they have a good laugh at the list, the conclusion is the same. First, it could be a sensory issue.  Nick seeks out many odd things to look through, tap and stim on and perhaps the act of dribbling out a tube of Mederma skin lotion from the second floor banister is satisfying some sensory need.   The second theory is that Nick is seeking attention and looking for a reaction. All I know that it is very hard to keep your cool when you see a full 64 ounce, Costco size container of olive oil emptied all over the floor. Fortunately I get my paper towels at Costco too. 🙂 I will say that the floor and my knees have a nice sheen to them.  Then there is our  poor cat, Miss Mellie sleeping innocently while Nick sprinkles a half bottle of fajita seasoning all over her gray fur.  Okay, I had to run into the other room and laugh on that one.

Freshly seasoned and washed cat…..

photo (113)

The dumping is just one facet.  Nick is like a toddler putting all kinds of things in the toilet.  A package of pens, my reader glasses, his iPod nano and his Dad’s watch are just a few of the things he’s submersed.  The newest trick is putting your shoes in the sink and running the water faucet full blast.  Here’s the thing.  He commits the crime, runs downstairs pointing up with a grin on his face and says “Uh oh.”  He is always looking to get a response.  It is not easy to keep a poker face during these episodes.  However I look at it like this, Nick is just trying to *”get my goat”.  The goat is a metaphor for a state of calm and peacefulness.  I grit my teeth, make absolutely no eye contact. On a shelf near the kitchen now stands a stack of permanently borrowed, white gym towels.   I point to the pile and he grabs a towel and cleans up.  No reinforcement is given to him.

Better put Mederma on the list…….

Not all the things he does are this messy.  Sometimes they are just plain funny, like a baby doll in the Pierogis….

So how can these inappropriate, attention seeking behaviors be managed?  First, the incidences are documented on what is called a Functional Behavior Assessment (FBA). On the form I record the date and time of the incident. Then follow the ABC’s:

Antecedent= What happened before the behavior

Behavior= The actual behavior and incident that occurred

Consequences= What happened after the incident

After looking at ABC ‘s, one can see if there is a common thread and determine why they might be doing the behavior.  As I mentioned in my very first blog entry, every behavior (even the bad ones) are trying to communicate something.  In some cases, it’s a sensory seeking reason.  Think about it- the sound of an object breaking or sight of a mess spilling or shattering all over the floor is exciting.  In the case of dumping, often it is when a parent is busy around the house, on the phone or trying to get ready to go to work.  It is clear that Nick is bored and seeking our attention while we are busy.  But mostly, I think it is a “control thing” for him.  It is something that HE has power over in his own life.

With this information a positive Behavior Support Plan (BSP) can be developed targeting undesirable behaviors.  Look at what possible replacement behaviors could be put in place instead.  This is where the “choice board” comes in.  This board has appropriate choices in the form of icons which he can pick from to better occupy his time. These choices should be highly preferred and stored away, so they are not accessible.  Below is a sample choice board.  The drop box is filled with fun things to throw and dump, followed by the woopie cushion, DVD player and iPod touch:

The final piece will be to add an icon to indicate that the behavior he did was wrong.  If he can see it in visual form, he will understand it.  This is to be done again without eye contact so as not to reinforce the attention he is craving.

Icon to show for inappropriate behaviors:

angry face

In the meantime, as I put the final touches on this piece, I turn around to see Nick unloading the dishwasher by himself.  This is a something he has complete control over (and is really adept at doing by himself).  I smother him with praise, “Good job big guy, I am so proud of you”.  Catch your child being good and reward them with the positive reinforcement.

Way to go Nick! 🙂

Show the icon for appropriate behavior:

happy face

All of these visual supports need to be done consistently across the board in every venue (home, school and community.) Hopefully with this plan in action, we can cut down on the dumping.  At this point in our lives we shouldn’t be dealing with this type of behavior or having to reinstall safety locks back on all the cabinet doors.  What can I say- It’s Nick’s world, the rest of us are just trying to keep up.  That’s what is in my noggin this week.

Here’s to not letting anyone get your goat*!

~Teresa 🙂

*The expression ‘to get your goat’ has its origins in horse racing. Race horses are very high-strung animals. Goats are often used as companion animals, to keep a horse calm. Someone wanting to fix a race would slip into the barn the night before the race, steal the goat, and then an upset, distracted horse would run a bad race. Hence, if you are upset and not at your best, it is said that ‘someone has gotten your goat.’

Nick age 5 with our next door neighbor goats in Northern California.

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