Posted in Government/Legal Matters Related to Special Needs, Recreation/Leisure and Special Needs

Blog #41~Back to the Future

Blog #40~Back to the Future

Candles blown out, presents opened and heads resting on pillows.  Another birthday week celebrated.  It’s was a big one for Al the 5-0 and Nick now 19 years old.  Only a day apart separates them. On the night of his birthday, Nick had crashed in his room, but he woke up and crawled in the king bed next to me.  I hesitated but pulled the covers up and nestled my cheek next to his.  I should have walked him back to his bed, but I wanted him near me. I needed to feel his warmth and hear his breath against my cheek.

Flashback to 19 years ago, Nick was held in ICU under oxygen and monitored.   I didn’t get to hold him or nurse him that first night.  I barely knew him. Small, helpless, holding on, I had no idea if he would be okay.  I wouldn’t be able to put my arms around him that night and it crushed me.

And so on the evening of his 19th birthday, I took in his breath and felt his limbs stretched long like a mature adult. I gazed at his features, the almond shaped eyes and tiny nose.  Similar they were, as if I could close my eyes and transport myself back to 1994.  And for a moment I did, to the time when I was in fear for my son’s health and whether he would be okay as the two nuns entered my room to hold hands and pray.

Exhale, I am back to the future. Slapped into what I should face.  But I don’t want to.  It’s an ugly web that is snagged with red tape. The maze of bureaucracy is daunting. First it was filing to continue to be Nick’s guardian (yes when he turned 18 we had to file to become his legal guardian since he can’t take care of himself.) Second it was to apply for SSI benefits that he qualifies for. Third, when your child turns 19 then you must contact DHS to have them switched from child Medicare benefits to adult. I only found out about this snafu the night before his 19th birthday, yikes!  I still don’t think I have my mind wrapped around any of this.

And on top of this, Nick is graduating high school in May and moving into a transition program until age 22.  I can’t say that I am ready to face the future after that.  Where will he live? Will he be taken care? Is he going to be safe and happy?  I attended a transition fair last week on the eve of Al’s 50th birthday.  I filled up my goodie bag with flyers, free pens, pads, cinch bags and sage advice. I came home and hit the wall, overwhelmed and that is where I stopped; until tonight.

After dinner out with Nick’s grandparents we came home to celebrate the birthdays. It is cold.  The heater went out sometime over the weekend. We kept our coats on as we gathered around the kitchen island.

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As I lit the candles on the chocolate cake for Nick to blow out, I had a flashback. While we cupped our hands around the steamy cups of coffee I spoke.

“Isn’t this ironic, here we are with no heat in the house.  It is just like when Nick was born and the ice storm had knock out the power. We didn’t know what we were doing while Nick lied there in ICU or whether he was going to be okay.  And poor Hank was so scared of the fireplace; that’s all we had to heat the house.”

Al pointed out something I had forgotten. “Mom you had the oven and heaters blaring on the stove top to keep it warm, remember?”

Oh how we were lost, Nick in ICU…. No power, and a new diagnosis of our son having Down syndrome…There is more to the story….. But you are going to have to wait for the book 🙂

Back to the present, I sit by the fire writing and try to stay warm.  I pictured little Hankie just 19 months old and scared standing at the staricase immobilized, pointing to the fireplace saying, “hot.”

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Birthdays bring a time to pause and reflect back and also look to the future. I don’t have any answers on Nick’s transition plan. In a way like Hank, I have been immobilized. I am trying to push the webs out of my face, and walk through but I feel a push and pull. I need to look to the future for my son.  He is 19 and like his brother Hank who is 20 and a sophomore at NIU, there is a need to let him spread his wings. But Nick knows no fear or evil.  I can’t help but feel like I am the only one who can protect him. That’s what is in my noggin this week. For now I will continue to pray for strength to fight my way out of this tangle.

~Teresa

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Baby nick 🙂

Posted in Fun Side of Nick

Blog #40~Say It’s Your Birthday

Blog#40~Say it’s your birthday…

“You say it’s your birthday
It’s my birthday too–yeah
They say it’s your birthday
We’re gonna have a good time
I’m glad it’s your birthday
Happy birthday to you.”

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It’s a silly thing we do…… singing this Beatles tune when calling certain people on their birthdays.  Speaking of which, this week two of the Unnerstall men have theirs.  Al is hitting the big one on Wednesday.  That’s right the big 5-0. 🙂  On the exact day that you turn 50, the AARP card application magically shows up in the mailbox. I proceeded to tear it up and to this day still toss them in the trash. But Al plans to embrace it fully to the extent that will make them go bankrupt.  On the evening of Feburary 6, 1994 I went into labor a week earlier than my due date.  I honestly thought I might have the baby on Al’s birthday.  But like his brother, Nick took his time and so he was born the following day. He was 6 pounds, 14 oz. and was 19 inches long. I gained exactly 19 pounds with this pregnancy.  Nick will be 19 years old on Thursday. 🙂

Here is a look at some of Nick’s birthday celebrations.  What a journey it has been.  Nick’s first birthday was celebrated with my side of the family and with my friend, Sally’s family.  Nick has very low muscle tone and you can see that my mom had to hold him with support over the cake as he blew out the candles.  At this point he was sitting up but far from being able to crawl very far much less pull up to stand.

A single candle on the homemade chocolate cake.  Hank is close by on the right.  Oh, my bangs are hideous…

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It wasn’t until Nick was 3 ½ until he was able to walk on his own. Here he is at the Arbor School in Houston celebrating his fourth birthday.

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We relocated to the East Bay area outside of San Francisco. Many of the celebrations were simple. This is a sad little cake. It’s pathetic as Hank would say. I am ashamed I made that.

Hank holding his brother’s hands so he won’t flap them by his ears…..

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So much for that 🙂

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He is sooooooooo excited! He is going to town stimming those hands by his ears. Looking back I see it; a trait of autism.

This is more like it. A homemade yellow cake with chocolate frosting that Hank and I made.  In case you were wondering I don’t have any formal cake decorating training, shocker right 🙂

Nick turns 6!

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Here’s Al at age 6, sporting a short cut like Nick…..all together, aahhhh he’s so cute…..

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We moved to the Midwest and Nick celebrated his 7th birthday in style with a legit cake and the party theme was Thomas the Tank Engine.

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At school for his 8th birthday, Nick got a special lunch with a Happy Meal. Looks like it is working….what a happy guy!

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The following year the birthday boys celebrated together with Al’s folks Jim and Theresa on Super Bowl Sunday. Best part of the day was the opening kickoff that Devin Hester ran back for a touchdown.
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Unfortunately, Da Bears came up short. But it looks like the birthday boys got some nice presents.  Nick is really growing and rocking that Brian Urlacher jersey!

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Nick’s got to get more lung power for his 17th, whew…..

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Big breath now you have 18 candles to blow out..Big guy’s got this!

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I hope you enjoyed this little taste of the boy’s birthday celebrations.  Common theme seems to be chocolate cake in all shapes and sizes. What a contrast from the low tone baby 19 years ago to present day.  My good friend April G. always says, “Funny thing if you feed and give them drink, they will grow.” Nick has done that in his own way and pace.  Not always in the time frame I had invisioned for him. But he did, and I couldn’t be more proud. That’s what is in my noggin this week.  Happy birthday boys and cheers to many more.🙂  Have a great week everyone and may your cake be full of candles this year and for many more to come!

~Teresa

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….. 🙂

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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…

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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.

Posted in Uncategorized

Happy New Year

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Happy New Year, wishing you health and happiness for 2013.  I look forward to bringing you more stories about Nick’s world. 

Cheers!

~Teresa

Posted in Uncategorized

Christmas Wishes

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My little elf Nick

We wish you all a Merry Christmas and a Happy New Year. We are on vacation and will resume the posts in two weeks. May your holidays be blessed with joy, family and friends. 🙂

Cheers~
Teresa

Posted in Uncategorized

Blog #35~Looking for the Light

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Blog #35~ Looking for the Light

A dark cloud has cast upon us during a time when we all look forward to the holidays and rejoice. My heart breaks into a million different pieces.

Throat tightens, gulp
Tears shed, hearts broken, lives crushed, innocence lost
Hard to breathe and fathom; unthinkable
*Brumous skies clung densely above, silent… over heavy hearts……

None of us saw this coming. I planned on cheerful, easy piece about Christmas over the years this week……But all of that doesn’t feel right. You may be wondering about Nick’s feelings now. Nick has no idea of this tragic, horrific event. He leads a life of innocence that I wish we all could experience to some degree. But Nick feels sadness and has empathy when others are in pain. If someone is crying he will too. It’s a silent cry that tears at your heartstrings.

Light a candle and take a few moments to reflect….. This life we have is but one, and might be cut short in an instance. Hug those you love a little tighter and remind them how much they mean to you.

That’s what is in my noggin this week.
~Teresa
*Brumous– Of grey skies and winter days; filled with heavy clouds or fog; relating to winter or cold, sunless weather.

Posted in Behavior/ ABA, Speech and Occupational Therapy

Blog #34~ Holiday Stress

Blog #34~ Holiday Stress

The holidays should be a time of joy and celebration.  This is not always the case for families of children with special needs, especially autism. The pressures we all experience with the demands of extra shopping, cooking, cleaning, decorating and the barrage of company can be daunting.  The level of anxiety you have may be tenfold for someone who has autism.  We all handle stress in different ways.

“What can I say?  Its Christmas and we’re all miserable”……Oh I love that movie Christmas Vacation. 🙂

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A few weeks ago in Blog #30~ 7 Senses of the World, I wrote about sensory processing disorder.  Taking in the senses in the environment can be both over and underwhelming and Blog #30 showed specific ways to cope.  I heard from many of you on what you found aversive along with ways you handle sensory overload.  Some of you struggle with crowds and people moving into your personal space.  Another was overhead lights. My son Hank and I can’t stand them and use indirect lights as often as we can.  Aversion to color and textures was another that my readers expressed.  So Ali it’s not just you and green slimy food like olives and artichokes. One of my friends has trouble with any foods that are white (sour cream, cottage cheese, milk, etc….)  I learned so much from my readers like how the color orange bothers one along with brown which reminds her of vomit.  Isn’t the sensory processing machine fascinating? 🙂

Regarding ways to cope, many readers mentioned using quiet background noise such as soft music or fountains (my favorite) to help to stay calm.  Visual and auditory ways to cope were sitting by a fireplace or hearing the waves of the ocean. One of my friends finds that someone brushing her hair is an instant calmer.  I know whenever I get to be with my mom, I want her to stroke her fingers through my hair.  Tell me how you manage the stress.  How do you deal with those quirky sensory issues that come at you….Does anyone else avoid cranberries  because it leaches all over the food on the plate? …..That would be Al, Nick’s Dad. 🙂  I want to hear more, message me at tjunnerstall@comcast.net or leave a comment at the end of this blog.

Let’s look at some ways to navigate the holidays with a child who has autism.  It doesn’t mean you can’t partake in activities but you may need to plan better and be prepared to scale back to some degree.  Decorations might be overwhelming for some kids.  Flashing lights or musical decorations can disturb some children (not Nick, he craves it!) 🙂 Decorating might need to be done in gradual stages.  Be sure to allow your child to help out if they can tolerate it. This gives some control when they are losing some from changes in their environment.  Going out shopping and other public places can bombard anyone with a cacophony of sights, sounds, smells and ringing bells. Intense stimuli while shopping  might be too much.  Try to plan a time when the mall and super box stores are not as busy during the week.

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Changes in routines can be hard as well.  Using behavior supports like social stories and  visual schedules can help prepare for complicated days.  Be sure to prep your child by including pictures of family members and friends you will be seeing. Provide them a blueprint to follow. Whether written or in picture icon form, it will give them predictability which keeps the stress level down.  Regarding gifts, you may need to work ahead of time to teach the concept that gifts are not to be opened.  An advent calendar could be a visual cue to countdown until Christmas.  This year I just hid the gifts.  Nick has tried to open them twice already (I am picking my battles)

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Finally, know how much noise and sensory input your child can take.  Watch for signs of tension. Nick will put his hands over his ears or pinch his cheeks really hard.  Allow them a safe place to decompress that is quiet and away from everyone.  This will help to act as a grounding place amongst the turmoil.

Let there be peace, at last….. my sleeping angel, Nick 🙂

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If all else fails then take some advice from Clark Griswold’s Dad……

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Clark:  “Our holidays were such a mess.”

Clark Sr.:  “Oh, yeah”

Clark: “How’d you get through it?”

Clark Sr.: “I had a lot of help from Jack Daniels.”

That’s what is in my noggin this week.  May you find your own way to deal with the holiday stress and have the “hap, hap, happiest Christmas!”  Cheers to all and fingers crossed that the little lights will be twinkling. 🙂

~Teresa