Celebrating Abilities - Down Syndrome Awareness Month

During the month of October, we celebrate people with Down syndrome and help others become more aware of their abilities and accomplishments. It’s not about focusing on disabilities, it’s about celebrating abilities. 

To gain a parenting perspective on Down syndrome, we turned to TEAM parents, James and Stephanie Mertz, to discuss their family’s story. James and Stephanie have two biological children who do not have Down syndrome, and two adopted children with Down syndrome.

Melissa:  What made you choose to adopt children with Down syndrome, rather than "typical children"?
Stephanie:  We had always felt open to adoption. With our first two pregnancies, prenatal testing showed a higher risk for Down syndrome. We just felt that was God’s way of preparing us for our life to come. I was also teaching in Special Education at the time, working with children of differing abilities. After our oldest two kids were born, we looked into adoption and just really felt God leading us to adopt kids with Down syndrome. We found a wonderful agency through a chain of events and were able to adopt both of our boys with Down syndrome through Spence-Chapin in New York.

Melissa:  How is parenting a child with Down syndrome the same as parenting your "typical children," and how is it different?
Stephanie:  We have 2 older biological children who do not have Down syndrome. You would think they would be easier to parent than our two children with Down syndrome. This is not always the case. Our kids who do not have Down syndrome can be just as difficult to parent. They are currently teenagers and have minds of their own. 

Raising two kids with Down syndrome certainly has it’s challenges. Most of the time, especially when they were very little, I didn’t think of them as different unless we went somewhere like maybe the park. Other kids were running and playing, whereas mine weren’t very mobile yet, even though they were the same age or older than the kids playing at the park. I honestly don’t think of them as having a disability until a challenge arises that prevents them from doing something like their same-age peers. They are children just like everyone else. They laugh, cry, reach milestones, throw fits, etc., just like all other kids do. The Down syndrome part is secondary to who they are. When I notice the differences between them and their peers, it’s things like meeting a milestone, but in a completely different time frame than other kids do. For example, a phase that a typical child goes through in 6 months may last a couple of years in a child with Down syndrome. They throw fits, just like their peers do. The difference is that it’s my 10 year old throwing that fit in the doctor’s office, not a 2 year old. 

You sometimes have to get creative when it comes to helping them understand what it is you want or need them to do. You have to remember that just because they are 10 doesn’t mean they are going to act like your typical 10 year old. However, you also can’t treat them like the 3-4 year old they may be acting or thinking like. There is a fine line between parenting them respectfully (due to the fact that they are older than they act) and parenting them at their developmental age. There are other challenges when their chronological age is greater than their developmental age, like a seven year old who isn’t potty trained is much more challenging to deal with than a much smaller child.

Melissa:  In your opinion, what are the benefits/joys/gifts of having a child with Down syndrome?
Stephanie:  There are so many joys in raising a child with Down syndrome. The greatest thing is that they see life through the eyes of a child for so long, whereas the rest of us “grow up” and become hardened to the world. There is also nothing like the sound of our boys’ genuine laughter of pure joy. I have also found, as have many of our friends and family, that through the boys, we have learned to appreciate so much more in life. We appreciate the seemingly small achievements that are such big achievements for them, like being able to tie our shoes. Seeing how others relate to the boys is also very rewarding. Our boys seem to bring out the best in people and have touched so many lives. 

A special thanks to James and Stephanie Mertz for their wonderful insight into the special challenges and joys of parenting children with Down syndrome! 
Down syndrome (DS), also called Trisomy 21, is a condition in which extra genetic material causes delays in how a child develops, both mentally and physically. (kidshealth.org)

• DS can present with a wide range of developmental delays and health problems, from very mild to more severe. Some of the ways Down syndrome can affect individuals include:
  • Low muscle tone
  • Intellectual delays
  • Slower growth rate
  • Heart defects
  • Hearing and vision difficulties
  • Spinal instability

• 1 in every 691 babies in the US are born with Down syndrome – About 6,000 per year (www.ndss.org)

• There are approximately 400,000 people currently living with Down syndrome in the United States (www.ndss.org)

Resources: 
National Down Syndrome Society
Kidshealth.org – Down Syndrome

Halloween Handouts... of the Non-Sugary Variety

Halloween is coming! If your kids are anything like mine, they have been dreaming about their costumes for weeks already! I am very fortunate to live in a large neighborhood that is FANTASTIC for trick-or-treaters. Therefore, I have around 200 little pumpkins and goblins knocking on my door each year happy to receive my Halloween handouts. I love Halloween, but I am not a fan of all of the candy that is consumed. PLUS, so many children have allergies to peanuts, gluten, milk, red dye, etc., that it is really too much to keep up. There is even the “Teal Pumpkin Project” to raise awareness of food allergies and to help encourage non-food treats! 

Every year, for over a decade, I have handed out a mixture of food and non-food treats so that both the chocolate-lovers, and the candy-avoiders can be accommodated. My husband always cringes and says that our house will get “egged” with handing out trinkets instead of treats, but I am always surprised that the kids seem to really like the novelty of receiving a non-food item. SO, this year, I am going all in, and I will NOT buy any candy to pass out. However, I am scouring the stores and the internet to find the coolest, most cost-effective trinkets for my cauldron. Here is what I have found:  

• Glow sticks/bracelets/necklaces:  I handed out glow bracelets last year, and these are #1 on my list this year. The kiddos LOVED them, and I also like that they keep the little monsters highly visible to any passing cars. Wal-mart, Target, and Oriental Trading Company have glow bracelets for under 20 cents a piece if you buy in bulk. I actually bought mine at Wal-mart and got 100 bracelets for $10. And, they are so cool, that I have never had a child complain at just receiving one.  

• Glow-in-the-dark items:  Its Halloween, its dark, and glow-in-the-dark items are fantastically spooky. Oriental Trading Company, as well as Amazon, have a variety of glow-in-the-dark items for only pennies a piece. I picked up glow-in-the-dark bouncy balls and glow-in-the-dark bugs for my hand out basket!

• Pencils/erasers:  Helllloooo! I'm an OT! I work on handwriting! I am always shocked when the kids actually say “cool, a pencil,” but they really do say it! Again, these can be found in stores or online for under a dime a piece, and yes, of course, pencils will be in my hand out basket this year!  

• Bouncy Balls:  I can't stand these things, but my children love them. They bounce all over the house and knock things over, and make a mess. But they are not staying at MY house, are they? I am causing headaches for other parents! These can be found at stores or online for a few cents a piece.  

• Stickers:  I always give out stickers, and they will be in my shopping cart again this year. They are perfect for the toddlers who might choke on candy but love the immediate gratification of getting a sticker on their hand when they come to my door.  

• Mardi Gras beads:  Talk about cheap! You can get dozens of these things for only a few dollars. Halloween is a time to dress up in crazy costumes! More is better! Help your guests add some pizzazz to their costumes! 

• Crazy straws:  I got this idea from a fellow OT and loved it! The kids can use the straws right away, as they hopefully drink something semi-healthy with all of that candy. AND… As you will remember from past blogs, oral input (including sucking & blowing) is calming. Way to help out your fellow parents by calming down the wild little monsters and goblins!

• Mini bottles of water:  OK… maybe a little bit lame, but practical. Halloween costumes tend to be geared toward cooler weather. But, the past few Halloweens here in Arkansas have been quite warm. The costume-laden kiddos who have knocked on my door have been dripping with sweat! Yes, bottled water is a bit boring. However, it does allow for continued trick-or-treating fun without taking a break to find refreshment.  

Also… Recycle, recycle, recycle! I am not a total Scrooge - I love chocolate as much or more than the next person, but there is simply WAY too much candy at Halloween. Don’t throw it away; put it to good use:

• Re-gift:  After your own children take a trip around the block, have them pick out a few of their favorite pieces of candy. Then dump the non-preferred candy items in your own hand out bucket, and re-gift that candy to the neighborhood kids. Again, I get around 200 trick-or-treaters at our house, and it definitely cuts down on the amount of candy I buy.

• Buy-back programs:  Many doctors’ and dentists’ offices will buy back your child’s candy. Your child gets a couple of bucks, and the candy is sent to soldiers overseas. Get more details in the resources section below.  

We still have a couple of weeks until the big day, when I will have 200 monsters knocking on my door! Please share any additional non-food treat ideas you may have!

Resources:
Food Allergy Research & Education (FARE)
Wal-mart
Target
Oriental Trading Company
Amazon
Halloween Candy Buy Back

Tabitha Mayberry: Living Life with Spinal Cord Injury to the Fullest

Did you know that September is Spinal Cord Injury Awareness Month? I know I am a tiny bit late, but better late than never, right? I actually didn’t know that September was Spinal Cord Injury Awareness Month until I stumbled upon an article that TEAM speech therapist, Tabitha Mayberry, shared on Facebook. It was an article in the in the Huffington Post about living life with paralysis.

Since the fabulous Ms. Tabitha Mayberry shared the article that informed me of SCI Awareness Month, I decided to ask her to share a bit of her story on living life with paralysis. (Cool tidbit of information:  Tabitha is the reigning Ms. Wheelchair Arkansas. You can read more from my Ms. Wheelchair Arkansas Q&A interview with her here.)

Tabitha’s Story

I was 21 years old when I sustained a spinal cord injury in a car accident. When I was first injured, I fought diligently for the longest time to walk, mostly to satisfy my family. I attended regularly scheduled therapy sessions. After approximately 18 months, however, my insurance company decided to cease payment for therapy. Despite the progress I had made, it was not enough to warrant continued services, according to the insurance company.

I shared with my rugby coach my desire to use an AutoAmbulator. This is a treadmill device to help patients train to walk and learn gait patterns. It was not available in Arkansas at the time. Some dear friends of mine, including my college rugby coach, decided to make their very own version of the AutoAmbulator. They completed the task with an old treadmill, a harness, some 2x4s and their own strength. For an hour every day throughout the entire summer, we would gather in my rugby coach’s garage where they hooked me up to a harness and took turns moving my legs for me while we laughed, sang, and truly enjoyed each other’s company. However, once the summer was complete and my right leg consistently began to swell, we had to make the tough decision to stop.  

You see, my spinal cord injury may have been an accident, but I am much stronger now. I am grateful for the human I am today. I have become a firm believer that things in life happen for a reason. A reason we may never know, but a reason nonetheless.  In order to make an attempt at receiving additional therapies, I decided to try KAFO (knee, ankle, foot orthotic) braces. This allowed me to receive 6 more months of treatment. Anything to continue therapy. I set a goal to walk across the stage at graduation to receive my Bachelor’s Degree. I completed the goal and obtained a standing ovation during the ceremony. It was one of the proudest moments of my life. It was a moment in my life that changed me – a moment when I realized we can accomplish anything we set our minds and hearts to do. After that moment, therapy was no longer an option. I made the decision to stop focusing on the desire to walk again, and instead, focus on living. Really living.  

Want more information on truly living life with a spinal cord injury? Check out our links below a few statistics on Spinal Cord Injury (SCI) in the United States, obtained from the National Spinal CordInjury Statistical Center. All of these numbers are listed as “approximate.”  Since my injury, I have sky-dived from an airplane, been to the beach several times, become a Speech-Language Pathologist, purchased a home, attended professional rugby matches, attended many concerts, traveled to Guatamala to serve orphans with disabilities (through TEAMworks), survived a second back surgery, and much, much more. These things I could never have imagined when I first woke up in that hospital bed on June 6, 2005. And for that, I am extremely proud of myself. I can only hope to inspire others around me and to let them know that limits do not exist.  

• 17,000 individuals sustain a new spinal cord injury in the US each year
• 282,000 people in the US currently living with a SCI  
• Males account for 80% of new SCI cases each year  
• 38% of new injuries are caused by car accidents, while an additional 30% of new injuries are the result of falls  

An Interview with Ms. Wheelchair Arkansas!, Children’s Therapy TEAM Blog, May 2016
The Precious Commodity of Time: Taking a Second Look at the Effects of Paralysis,The Huffington Post, November 9, 2014
Spinal Cord Injury (SCI) Facts and Figures at a Glance, National Spinal Cord Injury Statistical Center, accessed September, 2016
United Spinal Association, accessed September, 2016

Melissa Foster is the leading contributor to Children’s Therapy TEAM’s Weekly Blog. She is a Pediatric Occupational Therapist with over a decade of experience in the field. An active public advocate in the NWA community, Melissa addresses topics related to Autism, Sensory Processing Disorder and general health and child development.

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Children’s Therapy TEAM believes that every child who may benefit from therapy should be able to access it… PERIOD. We feel strongly about it. That’s why we offer financial assistance to families at every income level, even those with insurance, if the cost of treatment creates a hardship. Therapy may even be provided at no charge, depending on a family’s level of need. Please don’t hesitate to contact our Family Support TEAM to learn more about options. Every child deserves the best we can give!