Posted in Adult Day Programs for Special Needs, Autism, Down syndrome, Health Issues and Special Needs Child

Update This Week

Update This Week

Nick had a checkup this morning.  He cooperated for the most part.  Although he wasn’t to thrilled about getting the TB test.  This is in preparation for his transition to the adult day program that I have been writing about the past two weeks.  My son Nick has Down syndrome and autism, and will be turning 22 very soon.  As I sat there with him, I thought back on all the times we have been to the doctor.  I am grateful that he has been in good health.  It is truly a blessing.

That’s what is in my noggin this week 🙂

~Teresa

The face of unsure expectations…..

Nick Doctor

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Posted in Down syndrome, Health Issues and Special Needs Child, Physical Therapy and Special Needs, Speech and Occupational Therapy

Blog #127~So, Your Baby has Down syndrome

Blog #127~So, Your Baby has Down syndrome        

In October everything turns pink for Breast Cancer Awareness Month. But did you know it’s also Down Syndrome Awareness Month?

Twenty-one years ago I gave birth to my son Nick. The doctor detected several markers that he might have Down syndrome.  The next day, a hospital social worker handed me two brochures about Down syndrome. That is was what I had to work off of.

Here are the facts about Down syndrome courtesy of The National Down Syndrome Society, www.ndss.org:

  • Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
  • There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95 percent of cases, translocation accounts for about 4 percent and mosaicism accounts for about 1 percent.
  • Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.
  • There are more than 400,000 people living with Down syndrome in the United States.
  • Down syndrome occurs in people of all races and economic levels.
  • The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women younger than 35.
  • People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
  • A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.
  • Life expectancy for people with Down syndrome has increased dramatically in recent decades — from 25 years old in 1983 to 60 years old today.
  • People with Down syndrome attend school, work and participate in decisions that affect them, and contribute to society in many wonderful ways.
  • All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
  • Quality educational programs, a stimulating home environment, good health care and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.

I think back on that 33-year-old mom who was unsure of her future. What advice would I give her today?

Down syndrome journey

First, I would say that everything is going to be OK. The path will be different and move slower. But your child will work through the low muscle tone with the help of early intervention programs. The benchmarks like sitting up, crawling, walking and eating solid food will take longer to reach. Try to be patient and rest assured that your child will hit them.

Nick, age one….

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The next thing I would tell her is that there will be angels that light a path along the way. Embrace them and incorporate what you learn at home. The speech therapists will teach him how to blow bubbles, work on lip closure, feeding and to use sign language along with songs to communicate. The occupational and physical therapists will guide him in fine and gross motor skills. The teachers will hold the lantern and illuminate his mind. The social support groups will be your shoulders to lean on.

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Finally, I would share this message. Your baby was born with Down syndrome, but they are a person first. People with Down syndrome experience the same emotions that you and I do. Your life will change for the better as you savor the sweet victories. They will steal your heart and touch others in ways you can’t imagine. Your child will bring a unique perspective of seeing the best of the human spirit.

Nick in Sox hat

This is my advice to the young mother who just gave birth to a beautiful baby, who just happens to have Down syndrome. That’s what is in my noggin this week. 🙂

~Teresa

Posted in Autism, Down syndrome, Health Issues and Special Needs Child

Cold Season Survival

sneeze achoo

Cold Season Survival

Since we are in the trenches of the cold and flu season I wanted to post some survival tips that I use with my son who has special needs. Nick has Down syndrome and autism.  So, tackling the cold and flu season very challenging.  Here is some great information on this subject that I wrote a few years back:

https://nickspecialneeds.wordpress.com/2013/01/07/blog-36-what-i…-runs-all-over/

Cheers to a healthy start to the new year and surviving the cold and flu season.  That’s what is in my noggin this week. 🙂

~Teresa

Posted in Down syndrome, Health Issues and Special Needs Child

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

photo (115)

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.

sneeze cover up

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. 

Patron

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.