Two brothers and a doctor

Cade hangs with his brother in the waiting room

 

You can count on one hand the amount of times I take my kids out of school for reasons other than illness.  Today it may appear I had no good reason to take Cade out of school.

His older brother, Anker, had a doctor appointment with the Pediatric Cardiologist.  Anker doesn’t often do well at doctor appointments.  He equates doctors with poking, prodding, and the need to fight for his life.  Growing anxiety is the way he prepares for the doctor.  The last time we visited Dr. Van Gundy, Anker was too anxious to sit on the doctor’s table.  So, the 6-foot something doctor bent his knees as he sat on the bare floor and invited Anker to lay down beside him.  Anker responded to this gentle giant, and lay on the floor, allowing the doctor to examine his heart.

I was touched by a doctor who understood our son’s increasing anxiety. Try as he may, Anker could not utilize the resources to successfully express his fear.  Dr. Van Gundy communicated compassion to our son, while offering us a great sense of relief. After all, it is no easy task taking a growing boy to intrusive doctor appointments…we have the bruises and bite marks to prove it.

 

There are two things about Cade which prompted me to take him along to this appointment.  Cade adores his older brother. In the fifteen years of his young life, he has loved his special needs brother with a depth of understanding and strength which blows any observant onlooker away. He gently guides Anker to try the things the O.T. or speech therapist, or optometrist request Anker to do. He models the task, and playfully and patiently invites Anker to follow his lead. Down Syndrome individuals respond well to peer role models, and with gratitude, we have a wonderful role model sharing life beside his brother.  Anker felt relief today, with his brother beside him.

We have experienced many doctors in our special needs journey: doctors who have little sense of compassion, those who lack understanding of our child’s specific needs, and those who are absolutely outstanding.  These outstanding doctors are the ones who speak with compassion as they offer respect and care to our child.  They are acutely aware of the specific special physical needs of our child, and are the very doctors we remain faithful to. Since Cade desires to be a doctor himself, we find great value in exposing him to the characteristics of these outstanding doctors. I knew Cade would offer support to his brother, while gaining an education himself.

Cade sat closely as the nurse examined his brother.  Anker began to shout with anxiety, and Cade talked gently to his brother.  Anker calmed down.  Dr. Van Gundy entered the room and carried on a conversation with Anker,  “You are growing whiskers, aren’t you, Anker?” He took time to visit with our boy. He took time to ask questions, and he gently examined Anker while sitting beside him, this time on the examination table.

Heart problems are prevalent in individuals with Down Syndrome.  Many are born with heart defects and require heart surgery. This is one statistic we have not had to bear.  But, Anker does have a murmur, which we must continue to watch closely. Dr. Van Gundy referred us to a Pulmonary Specialist to rule out sleep apnea issues, and blood tests to check for Leukemia, Diabetes, and thyroid–all medical issues which have a higher occurrence rate in individuals with Down Syndrome.

So, we take the yearly tests, and we continue on with life. We stop for a special milkshake topped with whipped cream and a cherry, then head back to school.  Anker asks to stay home with me–feeling a little too stressed to return to his afternoon classes.  Cade returns to his texts and tests; having gained a little more knowledge from experiencing a life lesson on character with his brother and an extra-ordinary doctor.

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Helping Special Needs Kids Adjust to a Gluten Free Diet

My three sons 2005

May is Celiac Disease Awareness Month

My son’s communication and language skills were so limited at the time of his Celiac Disease diagnosis.  How will he understand what he can eat and not eat?  How will he be able to communicate his dietary needs to others?

I simply told him if he ate the goldfish cracker his tummy would get sick.  He managed to find a hidden cracker and thankfully he threw it up.  I repeated,  “Goldfish crackers make your tummy sick.  No more goldfish crackers.”  It was a quick realization for him.

Slowly, I pointed out the other food culprits.  He continued to grasp the concept.

Thank you God, we prayed for this.

How will your child learn to make healthy new choices?

  • Make an accessible food cupboard or basket for your child.  Put their name on the cupboard and celebrate the cupboard as his or her own.
  • Label packages.  Highlight the words “Gluten Free” on the food packages with a highlighter or tape your own colorful label on the gluten-free product.
  • Label choices.  Make a picture board of healthy and fun gluten-free choices: fruit, crackers, yogurt, etc.  Tape the picture board on the outside or inside of the cupboard as your child is learning new dietary choices.
  • Label the refrigerator.  Dedicate a bin or shelf in the refrigerator which remains exclusively accessible for your child.  Clearly and colorfully label the shelf or bin.
  • Look for labels in the grocery store.  Go shopping together and read the gluten-free labels on food products.  When your child takes an item from the shelf ask, “Is this food gluten-free?”  Use your finger to point out the words “gluten-free”.  Then celebrate, “Yea! This looks yummy!  These crackers are good for you.  Let’s put it in the cart”.   The repetition of reading labels together will help your child get in the habit of looking for the familiar “gluten-free” words until one day he or she will be able to do it on their own.

How will your child tell others his news?

Triumph Dining offers restaurant cards you and your child can carry in a wallet.  When entering the restaurant, guide your child to get in the habit of showing the card to the waiter.  If your child is limited in their speech ability, these cards are written to the chef  explaining the limitations of the gluten-free diet.  Cards are available to order through Gluten Free Restaurants, Gluten Free Shopping | Triumph Dining.

If your child isn’t able to say, “Is that gluten-free?  Is it okay for me to eat?”, then you need to provide teachers, caregivers and grandparents a list of those food items which are off-limits.   You will discover the need to produce these lists frequently in your child’s life.  Keep a file of your list for easy access.

The news about withdrawals

In my initial research of the gluten-free diet and special needs kids,  I learned kids who crave these gluten-laden foods have most likely become addicted to them.  There is an opiate effect that occurs and many parents have reported their own children went through withdrawal like symptoms when initially eliminating gluten.  Many children with autism had a surge in their behavior. The withdrawal effects are similar to addicts withdrawing from a narcotic. I stored that information away in the back of my mind.  We began our gluten-free diet.

New textures, flours made of rice and beans, crumbly breads; are all things families typically learn to adjust to with this new diet.  But then the behavior came.  Wild behavior.  AJ began tossing items across the room.  He couldn’t keep his clothes on.  He ran across the hall as quickly as he could, throwing his body into the door, then ran through the family room throwing his body into the back door.  He ran back and forth and back and forth slamming himself into the doors and walls.  His pain tolerance was even higher than usual.

I almost became frantic, until I remembered the possible withdrawal symptoms.  I reread every word and it was describing our boy.  Not every child with autism reacts with heightened symptoms, I believe it is a small percentage, and of course our family hits the jackpot again.  I kept him home from school the first week until his body adjusted and calmed down.  I am so thankful I had the information, and this is why I am telling our story.

I don’t want our story to discourage you from putting your own child on a life-changing diet.  My hope is you will be armed with various information.

Currently more information is available to families of special needs children and some doctors are increasingly aware of the various needs for our kids.  I recently read withdrawal symptoms can be eliminated or less severe if gluten is decreased from the diet gradually.  This sounds promising.

I am not a doctor, nor a nutritionist, just a mom who adores her family and respects the energy and love you are putting into your own family.  Talk to your doctor about your child’s possible reactions.  Contact a nutritionist to discuss how to gradually incorporate a nutritional gluten-free diet for your child.

Arm yourself with facts and support…..and breathe.  You and your child will get through it.

The really good news

Upon hearing AJ had just been diagnosed with Celiac Disease, a friend told us about her own daughter who also has Down’s Syndrome and Celiac Disease.  She told us to get ready for a great burst in growth and mental ability.  Because gluten had been wreaking its havoc on the body, nutrients have not been able to work as they should.  Now as the small intestine is healing due to the diet, the nutrients are capable of reaching the body and the brain.  She was so right!  We saw a great burst in his growth and capabilities.

Other wonderful results included a decrease of spitting up by almost 90%.  AJ, as well as the rest of the family, has adjusted to the Gluten-free lifestyle successfully.  He is progressively able to ask if a food is safe for him, and thanks to the increasing market of products, he is able to find his own gluten-free labeled items on the grocery shelves.

You may also want to read: “Our nauseating road to diagnosis:  Celiac Disease”.

For more detailed information on the Gluten Free Diet or other dietary concerns for your special needs child, you may be interested in these websites:

SteppingStonesVolume4Issue1.pdf application/pdf Object.

Wm. K. Warren Medical Research Center for Celiac Disease.

National Foundation for Celiac Awareness | NFCA.

Celiac Disease and Down Syndrome.

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