Posted in Autism, Down syndrome, Fun Side of Nick

Blog #39~Hardy har har Nick

Blog # 39~Hardy har har Nick

I spent a lot of time just observing Nick this weekend. The frigid temperatures begged us to stay hunkered down at home layered up in sweats and bulky sweaters. I thought a lot about what I have already written since I started the blog last March. One thing about Nick that stands out is that he is a funny guy (even when he is being a pain in the butt.) As soon as I sat down to the computer, he came over and carefully balanced this on my thigh. Then he ran away laughing. 🙂

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Harold the Helicopter is using my thigh as a landing strip.

He loves playing jokes on us. There is a signature sound he makes, it’s a stimmy sound like his is saying “geeeeeehhh,” while he flaps his hands by his ears. I stop, look and listen to see what he has been up to. Oh hardy har har, he turned on the faucets in the bathroom full blast and ran out quickly. Sometimes while showering, he will turn the lights off on you too. Now that’s funny stuff. 🙂 After his shower last night, I saw him out of the corner of my eye putting something underneath the covers on my side of the bed. He pulled the covers up quickly and took off all excited. Underneath here is what I found.

Sneaking Mr. Platypus under the comforter……….

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Then a little while later…….. He’s on a roll….

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He also likes to mess with our cat. I am not so sure that Miss Mellie appreciates the *propinquity of Nick’s stuffed animals on top of her…….

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Poor kitty, I don’t think she wants to be a velcro icon strip.

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There are a lot more pictures in Blog#33~Stuff on my Cat located in the December archives!
I admire his cheerful spirit. He wakes up each morning with a big smile and first thing he does is let out a big fart while gleaming proudly might I add. What a great wakeup call. 🙂 In the same sophomoric vein, that boy can rip out the loudest and longest burps all from just a mini eight once can of Sprite. If you want to get a better sense of Nick’s funny side you’ve got to read Blog #6~The Nick Connection (in the May archives) and Blog #14~PB Unnerstall (June archives.)
Yesterday morning I watched him cheerily dancing side to side with his headphones on. He was in the zone. As a mother there is nothing better than seeing your child happy and hearing them laugh. Well wait a minute…. maybe when they sleeping like angels. Now that supersedes everything else. 🙂

Oh yes the sound of silence, zzzzzzzzzzzzzzzzzzzzzzz…..

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Looks like the cat isn’t holding any grudges.

Here are a few other examples of his sense of humor. He thinks it’s funny when he bangs or bonks himself accidentally. Anytime he drops something or someone else does he busts out laughing. He enjoys watching You Tube videos of funny cats, epic fails like the ones you see on the show America’s Funniest Videos, and people sneezing. Many of his favorite movies are comedies. Eddie Murphy is his favorite (Dr. Doolittle series, Norbit, The Nutty Professor) along with Mrs. Doubtfire and Little Man.

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My funny guy, that’s what is in my noggin this week.

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I think humor is what has kept us afloat all these years.

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Have a great week, and keep that sense of humor with you!
~Teresa

*According to Ask.com, the word propinquity means a close kinship or similarity. It can also mean being close to someone or something, either physically or similar in nature.

Posted in Speech and Occupational Therapy

Blog #38~ Speak Easy

Blog #38~ Speak Easy

Speak easy……If only Nick could….. But having Down syndrome and autism has led him down a different path.

Last week I participated in the parent interview for his speech evaluation.  One form used in the evaluation was called “Expression of Intentions and Emotions.” 

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Communication isn’t just about using words.  As you can see on the chart there are many ways of making needs known.  Not all are positive; in fact Nick uses many of the negative presymbolic means (tantrum, aggression, and self-injury) to get his point across when he is frustrated or angry.  When Nick is pissed off he will grab his cheek and pinch it really hard several times over.  This is a warning sign of escalation and possible meltdown that has to be redirected quickly.  My go to for a redirection is doing something to distract him or embarking some humor (banging my elbow and saying ouch) always makes him laugh. As I have mentioned in past blogs, every behavior even the negative ones are communicating something.

In the same vein he can show love without uttering one word.  He will come up randomly while I am working a give me a sweet peck on the cheek.  I love his kisses, so sweet.

So back to the chart above and a few more examples of communication.  When Nick request food or objects he will use “eye gaze.”  I can hold up a box of Little Debbie Swiss Cake Rolls and Oatmeal Creme Pies.  All you have to do is watch where his eyes will follow to know which one he will choose.

I’ll take one of each….hee hee….. 🙂

little debbie cakes

He will also use “pointing.”  Nick and his speech therapist Brian’s hands made the wall in the lobby at Suburban Pediatric Therapies………

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 He also demonstrates by  “pushing away” along with “signing” the word no.  In addition, he incorporates his picture icons to make requests.  During the evaluation it is clear that his strengths lie in his good eye contact, receptive language (listening and understanding what is being communicated), usage of icons (which in a way has become his voice) and his ability to seek attention.  He does this both appropriately (by helping out around the house and taking great pride)/ and inappropriately, (fake sneezing, burping, farting, dropping and dumping, etc….) If you want to get a real taste of this see Blog #3~Getting Your Goat located in the April archives and Blog#10~Nano Second found in the June archives for more about his shenanigans. 🙂

Silly fun fake sneezing with Aunt Laura…..Aaaa-choo, that’s funny stuff!

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The weakness for him lies in “joint attention.”  He can’t verbally comment on an object.  I can prompt him by asking him if he likes let’s say the movie “The Nutty Professor.” He can respond with a smile and a thumbs up. Actually that is what he is watching this morning.  He was laughing earlier at the dinner table scene (where Eddie Murphy plays almost every character in the family.)

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Of course there is some farting involved which always cracks Nick up.  I think he gets that from my Dad 🙂  I get a kick out of Nick, what makes him tick along with what makes him laugh.  He does have many words he uses and says pitch perfect.  However, he is unable to string together more than two or three words at a time.  If I ask him if he “needs to go potty”, he might respond with, “No need, potty.” Most likely he is following my verbal model on this. *Speak easy, no but language can be unspoken too.

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So we will formulate new goals to work on for speech therapy after the evaluation is completed. We will continue to help him communicate his needs, wants, frustration and disappointment. And so I leave this piece by quoting the Nutty Professor Klump, “You got to keep on pushing, pushing!”  That’s what is in my noggin this week. 🙂

~Teresa

*Speak easy: According to Wikianswers.com, A speakeasy was an establishment that was used for selling and drinking alcoholic beverages during the period of United States history known as Prohibition (1920-1933, longer in some states), when the sale, manufacture, and transportation of alcohol was illegal. The term comes from a patron’s manner of ordering alcohol without raising suspicion – a bartender would tell a patron to be quiet and “speak easy”.

Posted in Down syndrome, Physical Therapy and Special Needs

Blog #37~ Just Do It!

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Blog #37~ Just Do It!

This week I want to hop on the fitness bandwagon.  I ‘m not really hopping on it.  2013 marks 30 years of teaching in the fitness industry.  The gym gets busy in January with folks coming in with their resolutions to get in shape.  Are there any trade secrets?  How can someone like Nick who has Down syndrome and autism keep fit?

Buff Nick is too cool by the pool….. 🙂

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First of all there are physical attributes that are associated with Down syndrome which should be considered.  Here is what I pulled off the following website, Livestrong.com is a great resource for more than just its well known cancer support:

http://www.livestrong.com/article/367865-exercise-safety-tips-for-those-with-down-about…”syndrome/#ixzz2Hu6k2Yg3

“Injuries may be caused by many of the symptoms of Down syndrome, including an underdeveloped respiratory and cardiovascular system, poor balance, perceptual difficulties, hypotonicity — muscles that have the ability to stretch far beyond their normal limits — hypermobility of the joints, and ligamentous laxity, which is flexibility of the joints associated with an increased risk of dislocation, says the National Center on Physical Ability and Disability or NCPAD. In approximately 17 percent of people, there may be a severe cervical cord disorder known as atlantoaxial instability that is characterized by laxity between the first and second cervical vertebrae. This makes spinal cord injuries much more likely. If a physician allows exercise, strict monitoring is important to avoid injury to the spinal cord and other areas of the body.” 

Nick had a spinal x-ray which ruled out atlantoaxial instability.  This screening should be done before any exercise program is implemented.  Because of his low muscle tone he received physical therapy and early infant and childhood intervention programs which showed us how to incorporate exercises into his daily routine and play time.

Here are just a few things we put into place at home:

*Sit your child on a small ball and do music time and bubbles to build core strength.

*Create a mountain with a bean bag chair and blankets.  Put a preferred music toy at the top so your child will have to climb up it to reach it.

*Tack musical toys up so your child will have to pull up to stand to play with them.

*Push toys can sometimes be too light, so add some weights to them so it is easier for your child to be stable and push them.

*Bean bags work great to work on vocabulary.  Line up a few flash cards and have your child toss the bean bag to the word you want them to recognize and speak.

*Balls, balls, balls.  Get a mini basketball hoop, Slo Mo balls and nerf balls are easier to catch.  I use to have Hank bounce ping pong balls on the coffee table to entice Nick to pull up to stand.

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Now that he is older I have incorporated more household chores in his routine like vacuuming, taking laundry baskets up and down the stairs, and unloading the dishwasher.

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In school he takes P.E. and enjoys swimming, walking on the treadmill and even yoga.  Of course his favorite is dancing.  He slaps those headphones on and goes hard.  There are many programs through your local park district as well as Special Olympics that can enrich the lives of people who have special needs.

It’s all about consistency in having an active lifestyle, which should begin in childhood.   Increasing activity will help minimize obesity, decrease cardiovascular and type II diabetes risk factors. For aerobic and strength training, make sure adolescents participate in recreational and community activities.

What about the rest of us?  The same holds true about consistency in exercise and dietary intake.  It’s not rocket science.  Calories in and calories out is what it boils down to.  If you consume more than you burn then you are going to gain weight.

 Here’s my top 10 Tips…….

  1. Get medical clearance before starting any exercise and dietary program.
  2. It’s a good idea to enlist the help of a personal trainer who can help you set goals and a timeline. Be sure to ask about the FITT Principle when setting up your program (Frequency, Intensity, Time and Type of exercises.)
  3. Carve out a reasonable time of day that you can commit to and make it a part of your routine like brushing your teeth. (You wouldn’t skip brushing your teeth would you?)
  4. Pick activities that suit your interests and will keep you motivated.  Mix up your workouts so you incorporate all 5 components of fitness (Cardiovascular strength, muscular strength, muscular endurance, body composition and flexibility.)  Total fitness!
  5. Every little bit adds up.  Take the stairs, park further away, do some triceps dips while you wait for the shower to warm up, etc…
  6. Use it or lose it.  Did you know you start to lose training effects after just 48 hours of inactivity?
  7. Don’t obsess with the number on the scale. I always say your jeans don’t lie!
  8. Shop the outer aisles of the grocery store, fresh is best.  If you can’t pronounce the ingredients on a label it might be wise to leave it on the shelf.
  9. Have a support system in place.  Get some workout buddies that will hold you accountable.  There are also some great phone apps to help track and keep you motivated.  Check out the app called “My Fitness Pal.”
  10.  All in moderation, when it comes to eating.  Don’t deprive yourself of your favorite foods now and then.  If you know you are going out for a nice meal plan to eat lighter that day.  Watch those serving sizes too.  I love the visuals like one serving size of protein=a deck of cards, one serving size of pasta=a tennis ball, one ounce of chees=a pair of dice.  Check out sparkpeople.com and foodnetwork.com for more of these tips.

Finally let me borrow a slogan from Nike, “Just do it!” That’s what is in my noggin this week.  Cheers to feeling good and having fun while you’re at it.  Nick and I highly recommend putting on your favorite music and dancing it out!

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~Teresa 🙂

Posted in Down syndrome, Health Issues and Special Needs Child

Blog #36~ What is Red and Green and Runs All Over?

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Blog #36~ What is Red and Green and Runs All Over?

Answer: That would be Nick and his ruddy cheeks and nose crusted with green, gloppy boogers from a cold.

The nasty funk that boy can emit from his nostrils is like a faucet that can’t be shut off.  Under the mucus are his parched, red cheeks that blare even more with the cold air beating over his dry skin. Welcome to the cold season and Nick’s world. 🙂

Certain traits attributed to having Down syndrome factor into the likely occurrence of more respiratory infections. “Medical & Surgical Care for Children with Down Syndrome,” available through Woodbine House is an excellent guide for parents who have a child with Down syndrome. Here is what this guide says about drainage and colds:

Physical growth may also be different in the details. The head and facial features (eyes, nose, jaw, ears, etc.) of children with Down syndrome are smaller and may grow more slowly than in other children. As a result, facial structures such as tear ducts, sinus passages, and Eustachian tubes (connecting the middle ear to the back of the throat) may be smaller in size and become blocked more easily. This contributes to an increased likelihood of tear duct, sinus, and ear infections in some children.”

“In addition, because of the relatively small size of the nasal cavities, sinusitis is common. So, too is drainage from the nose because sanal drainage s often due to infection or inflammation of the sinuses. Eight out of ten children with Down syndrome have persistent nasal drainage.”

Children with Down syndrome are prone to having dry skin and hair. Here are a few things that I’ve found essential to include during the winter months:

1. Aquaphor: a great healing ointment that is non-irritating and soothing.

2. Oils of Aloha- Hawaii’s Kukui Conditioning Shampoo: A less harsh dandruff shampoo that doesn’t sting the eyes. Here are my two favorite body washes:

At Bath and Body Works, really relaxing and clears the head…

stress relief body wash

Skin soothing body wash for sensitive skin…

Aveeno body wash

3. Exergen Temporal Scanner: Swipes across the forehead, easier for those with sensory issues.

4. Hand Sanitizer:  This along with constant hand washing and not touching your face in between.  Did you know cold germs can live on surfaces for 7 days.  So, If you have to touch your face use the inside of your shirt and not your hands.

5. Cover Up:  A sneeze can travel 32 feet in the air. I always do a duck and cover with my arm or turn quickly away when Nick fires one at me.

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Each winter season, I find myself dressing Nick in the hues of grey and green or camo colored shirts when he has a cold.  These colors blend in better when he decides to blow his nose and wipe it on his shirt. It has never been easy giving Nick medicine. He is unable to take anything in pill form so it has to be liquid or dissolvable in form. Countless times I’ve tried to get him to down a tiny cup of Dimetapp.  The end result was him spewing that sticky, purple stuff all over the both of us. Now that he is older, it has become much better. I hand him the cup of Dimetapp and he slams it down as if it was a shot of Patrón. 

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Cheers to that! 🙂

Having a child who has Down syndrome and autism can be extra challenging when they are not feeling well. Because his speech is so limited he is unable to tell me how he feels. I have to go by his energy level and the look in his eyes.

Poor guy…….

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The sure fire way of knowing he isn’t feeling well is his appetite. Hmmm, is it *Feed a cold; starve a fever or the other way around?

Answer:  At the end of this post.

The cold season can be rough, especially with a child with special needs.  I hope these tips might helpful for your family.  For more information about health and Down syndrome click on @https://nickspecialneeds.wordpress.com/2012/11/26/blog-32-cheers-to-good-health/

That’s what is in my noggin this week. Here’s to a mild cold season for all of us and to a healthy New Year in 2013!

~Teresa

*According to Ask Yahoo, The original maxim is “feed a cold, starve a fever.” In other words, eat plentifully to fight a cold, and resist food if you have a fever. To avoid confusion, we recommend steering clear of both versions of this myth. The Straight Dope dates the practice of fasting to combat fever to a 1574 dictionary. As do many other medical practices from the Middle Ages, starving yourself when you’re sick seems to us to be a pretty questionable tactic. However, opinions on the issue differ. A 2002 article from New Scientist cites a Dutch research team that ran an ad hoc experiment and came to the conclusion that “eating a meal boosts the type of immune response that destroys the viruses responsible for colds, while fasting stimulates the response that tackles the bacterial infections responsible for most fevers.” But the evidence is far from conclusive. Colds and flus are caused by viruses, and your body needs energy to fight them. Stay at home, eat light, healthy food when you’re hungry, and drink lots of fluids. You can find lots of other ways to fight the flu naturally at eHow.com.