In Case You Think it’s a Burden to Have a Sibling with Special Needs

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Many years ago I received an unusual request from my OBGYN. He suggested I share my personal experiences with one of his patients at my home. I welcomed the opportunity and invited this pregnant woman to visit with my boys and me. My oldest son who has Down’s Syndrome was about 4 at the time and his two brothers were 2 and merely months old, when we sprawled on the floor and talked with her in our tiny living room.

The woman’s unborn child had recently been diagnosed with Down’s Syndrome and she was considering an abortion due to the unknown burdens her first born daughter may one day encounter if she has a sibling with special needs. She asked me her fear-packed questions and I answered with as much honesty and sincere hope that I could express.

I never saw her again. I don’t know what choice she made-but I often think of her and those who entertain similar fears. I think of her when a stranger pulls me aside to tell me how they watch us and are so impressed with the brothers’ interactions. I think of her when my teenage boys walk hand in hand from the high school soccer field with no bother about anyone’s opinions or stares. It’s a spontaneous love.
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The “burden” of having a sibling with special needs organically causes a depth of character. If you were to spy into the windows of our home you will discover typical teenage behavior as well as a display of perseverance, empathy and the ability to not “bat an eye” at what outsiders may view difficult.

Today my oldest son AJ, turns 20. Eighteen years his siblings have cohabitated, 18 years they have shared schools, bedrooms, car seats and adventures. Each has been kicked, scratched and mutually endured each others poop at different stages of their brotherly bliss.

Many times their plans have been altered because of their sibling with special needs-and many times his plans have been altered because of the other two. It’s just a give and take relationship.

 

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When asked if they could have the opportunity to change AJ with a pill or procedure, they will express an emphatic “No”. No hesitation-they adore their older brother. His entire messy package of anxiety, stubbornness, physical limitations, funky noises and difficult behaviors are outnumbered by his laughter, silliness, hugs, huge accomplishments and stick-to-itiveness!

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Unconditional love and acceptance lingers between the threesome.

So to further ease your fears in case you think it’s a burden to have a sibling with special needs, I offer you these images of authentic brotherly love. And I can’t help but do it with the captions written from the words of one of my own favorite songs from the 70′s, “He Ain’t Heavy, He’s My Brother” (B. Scott and B. Rusell, sung by the Hollies).

 

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The road is long
With many a winding turn
That leads us to who knows where?
Who knows where?
But I’m strong
Strong enough to carry him
He ain’t heavy, he’s my brother

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So on we go
His welfare is my concern
No burden is he to bear
We’ll get there
For I know
He would not encumber me
He ain’t heavy, he’s my brother

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If I’m laden at all
I’m laden with sadness
That everyone’s heart
Isn’t filled with the gladness
Of love for one another

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It’s a long, long road
From which there is no return
While we’re on the way to there
Why not share?
And the load
Doesn’t weigh me down at all
He ain’t heavy, he’s my brother.

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The Anxieties and Adventures of Learning to Ride a Bike

Day 1: Anker sits next to the bike. He has completely shut down with anxiety and cannot be coaxed onto the bike.

The ability to ride a bike brings a sense of independence and joy to children.  For a special needs child, bike riding has the potential to provoke anxiety, frustration and disappointment.  Family bike rides are a simple pleasure our family has not been able to enjoy since our boy grew out of the buggy we could attach to the back of a bike.  Our son Anker continues to express a desire to ride a bike, so when the “Lose your Training Wheels” program came to the Sacramento area, we signed him up.

Our youngest son protested, “AJ will never do that. We are just going to sit and watch him do nothing.”  Truthfully, he echoed my private thoughts. I told my son, “As long as AJ expresses the desire, we will give him the opportunity. Ten years from now we will not have any regrets for giving it our best shot.”

Anker was so happy to go to Bike Camp Monday morning. We read about bikes and talked about how fun it will be to ride a bike with his brothers. It took a while for the volunteer to fit the helmet on Anker’s head properly. He was losing patience with the man as he took the helmet on, fussed with it, and replaced it on his head several times.  Finally it was time to meet his volunteer helpers and approach the bike. Anker began shouting, “No, No, No!” and plopped down next to the bike. He has completely shut down with anxiety and cannot be coaxed onto the bike. Yes, for 75 minutes he sat like a lump on the hard gym floor.

Day 2: Anker becomes familiar with the bike and his loving helper

The next day Anker was ready to go back to bike camp. He talked about it repetitively. Once again, he plopped down on the hard gym floor for half an hour or so. He eventually broke into tears and his helper lovingly hugged and encouraged him. Anker requested to walk and together they walked around the gym floor for most of the morning. He watched the other bikers as they passed him by. Eventually he decided to make friends with the bike and walk it around the gym.  He spent the rest of the morning pushing the bike with his patient helper, Cathy.

Day 3: Anker bravely attempts sitting on the tandem bike

Teacher Kevin rode the tandem bike up to Anker at the end of the session. Surprisingly, he climbed onto the seat. Keeping his feet firmly on the floor, Kevin slowly walked the bike around the gym. This was a huge step for Anker!

The design of this tandem bike allows the rear rider to steer and control the bike, while giving the student the feel of control. When a biker actually pedals, the teacher is able to diagnose any corrections the biker needs to learn, such as leaning too much to one side or not pedaling strong enough.

Teacher Kevin, a college student studying to work in special education and psychology, is being challenged by Anker’s level of anxiety and resistance.  Today a volunteer shared with me there is another young boy with Down’s Syndrome in the afternoon bike session who is struggling with the same level of anxiety and resistance.  Together we have decided it is best to break down the steps of learning to ride a bike even smaller, in order for Anker to become comfortable with each part of the bike.  We are hoping Anker makes friends with the bike pedals tomorrow!

On the fourth day of camp Dad takes off 4 hours of work to come watch Anker at bike camp. Anker is the most alert he has been all week.  We blasted his favorite music in the van, “Juke Box Hero” and “What if His People Pray” to pump our boy up. He talked about putting his feet on the pedals today and earning a cheeseburger at In ‘n Out. Anker grabbed onto Dad’s hand and ran into the gym.

Day 4: Anker shuts down for awhile

Moments after walking through the entrance of the door, he plopped on the ground with a shout, “No!” and completely shuts down again. Pictured here, brothers and Dad try to coax our reluctant bike rider.

 

Anker makes progress with the additional support of his family

Anker decides to walk the bike around the gym. First, he enlists the help of Dad and his brothers. Together they walk slowly around the gym floor for another half hour. Time was almost up and I tucked my camera away for the day. For the first time this week I considered not coming back for the final day of bike camp. What would be the purpose of driving another 50 minutes back and forth just to hold a bike handle and walk in circles?

At that very moment a switch seemed to go off in Anker’s brain! He asked for help to get on the bike. Dad and brother helped him on the seat, while his youngest brother held the bike — trying to keep the bike from any movement that may trigger anxiety. I fumbled to retrieve my camera and ran to the middle of the gym floor. There was my boy—feet on the pedals–riding a bike!  The parents and volunteers broke out in cheers and clapped enthusiastically for him.

 

 

Day 4 & 5: Anker rides a bike! 

Eighteen years of failed attempts and four days of working through anxiety over bike riding, and here he is–pedaling his own bike and almost independently causing it to move!

Today is our last day of bike camp and we cannot wait until next year for the “Lose your Training Wheels” program to come back. We will be carrying out our own bike-riding plan at home. Keep in touch to see how we use behavior management, rewards, creativity and consistency to help Anker progress in his bike-riding adventure.

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A Necessary Agony

Our Special Olympian

The perpetual mission of a special needs parent includes gleaning the abilities, capabilities and potential from our children in every aspect of their lives. This has been our mission since the third month of my pregnancy. Yes, that is when we were told our child had Down’s Syndrome and we began to face opposition for his life before he took his first breath outside the safety of my womb.

I swung my chin higher and my husband became stronger as we instantly took on the role of protector and advocate for our special need’s child. We recognized in those precious infant days that the ignorance of society would be one of his greatest enemies. So we surrounded him with people who believed and expected the best in him. Quickly we learned those doctors, therapists and even loved ones who viewed our boy through a stereotypical box would be the most dangerous people in his life.

Those boxes, marked with stereotypes of what he will be able to do and what he will not be able to do would only confine his ability. Those are the very boxes which once put children with Down’s Syndrome in group homes, and chose not to teach them reading or writing because “they will never learn”.

No, we would fight to surround him with forward thinkers, those who think outside the boxes, who brainstorm with parents and try new approaches and respect his individuality.  After all, God works outside the parameters of boxes!

But everything has changed today, when we faced a necessary agony. My husband and I sat in our attorney’s office and talked about all the things our son was incapable of doing. Did I say “our attorney”? We have never had an attorney before, yet we just spent two hours rehashing and recording the disabilities and inabilities of our child.

We talked about the time he took a walk around the block with his dog by himself while the babysitter was caring for him. A neighbor had to bring him back to the safety of our home. We talked about the day he was playing in the backyard while his Grandfather was working on the lawn. He came in with a bloody hand and cuts all over him, but unable to tell me what was wrong. After investigating, I discovered a broken glass he was playing with until it crushed in his grip.

We explained about the fact that he is like many American males (at least in this household) who like to strip down to his underwear after school. The difference however, is he will answer the front door to a stranger before putting his pants back on.  We explained the biting, kicking and hitting that goes on when a doctor approaches him with a needle.

Our attorney continued to ask us to explain his limits to dressing himself, preparing meals safely and independently or simply whether people in the community can understand him when he talks. My chin dropped lower as I sank down into the office chair. Then the lawyer explained our son would be given a court-appointed attorney. Yes, we are actually taking our seventeen year old boy to court in order to gain the rights to provide and care for our boy-man for the remainder of his life.

I came home from that appointment in an emotional haze. No parent enjoys talking about all the things their child is not (yet) capable of doing, let alone recording it for all to see. I sat in a heap on the corner of our bed and replayed the last seventeen years of our son’s life. As advocates of his capabilities, we are used to sitting around IEP tables and therapist’s offices talking about the great strides he is taking and how we can continue to work together toward his great progress. Even though we openly address his disabilities, it is always in context of what action can be taken next to get him to the next successful stage. We all know progress comes in months or even years, but the room is filled with positive energy towards the reaching of the next goal.

What a dreary day, when a parent lays down all their hopes for what could be and only focuses on what is not.

Conservatorship is something we have heard about over the years, but had no idea the extent of emotional and financial agony it would require of us. As I leaf through the stacks of resources I have acquired in our home library, there is very little information dedicated to the process of Conservatorship. We were advised to go to the local court house for information, only to experience a lot of red tape. Finally we realized it was best to have an attorney help us with the process.

In the state of California, in order to gain 100% Limited Conservatorship for our child, we must state why our boy-man is not able to care for himself independently, medically, physically, and social-sexually.  Proof must be gathered through doctor’s statements and court-appointed investigators. Lastly, the Regional Center interviews the family and the child and makes a written recommendation to the court.

Without 100% Limited Conservatorship, we as parents would not be legally allowed to make ongoing medical decisions for our child, nor would we be allowed to intervene if our boy-man agrees to marry someone, leaving him vulnerable to predators and all-types of frightening scenarios to a parent. What seems to us to be an infringement upon our parental rights and an insult to our family history with our child has been set up by the legal system in order to protect the 1% of the population who takes advantage of vulnerable individuals.

So, we have spent the last two months in passionate pursuit of Conservatorship in order to protect the well-being of our son. The last weeks have included multiple reports, attorney phone calls and strangers coming in our home to interview our son privately.

Our court date is quickly approaching and we are told the final decision comes down between the regional center’s recommendation for full or partial Conservatorship, and how much authority the judge gives to the regional center’s report. The regional center is known to generally withhold the parental ability to make social-sexual decisions. This news brings my saddened spirit back to the protector’s stance.

This is the big court week–one week before our son’s 18th birthday. I will post again about the results of this Necessary Agony: Conservatorship.

 

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Why not celebrate Celiac Awareness Month with a plate of decadent brownies?

Naturally Gluten Free!

 

Why not celebrate Celiac Awareness Month with a plate of decadent fudgey brownies?!

Although gluten-free flours and products have happily improved over recent years, I still prefer to bake and cook with ingredients which do not require the use of flour. I made these Flourless Fudge Brownies last week for a wonderful group of women who have varying dietary requests.

Rather than bake separate items, it is so much easier to bake something amazing everyone can enjoy. No one is left tempted with competing desserts, and you don’t have to tell your child, “No, you can’t eat those today”.

This recipe is taken from my favorite baking cookbook, given to me by my parents in 1996. The well-worn pages covered in chocolate fingerprints are evidence this is my go-to book for baking delicious desserts. Check out this funky shot of my treasured book,  “Debbie Fields Great American Desserts” cookbook (published in 1996).

 

Debbi’s Flourless Fudge Brownies

This recipe is baked differently than any other brownie recipe you may have. It tastes like no other brownie you have eaten!

Equipment Needed:  *9-inch square baking pan            *electric mixer

Ingredients:  *6 large eggs              *18 ounces semisweet chocolate, chopped         *16 Tablespoons (2 sticks) unsalted butter, cut into tablespoons      *1 teaspoon pure vanilla extract

      Glaze:      * 1/4 cup heavy cream        *4 ounces semisweet chocolate, chopped      *24 pecan halves, toasted for topping  (I chose fresh raspberries in place of the pecans)

Directions:

  1. Preheat oven to 425 F.  Butter baking pan, line it with aluminum foil, and butter foil. Set the eggs in a bowl and cover them with hot tap water.
  2. In the top of a double boiler set over barely simmering water, melt the chocolate with the butter, stirring until smooth. Stir in the vanilla. Transfer the mixture to a bowl and let it cool slightly on a rack.
  3. Put the warm eggs in a large bowl and beat using the electric mixer on high speed until about triple in volume, about 5 minutes. Fold half of the beaten eggs into the chocolate mixture to lighten it.  Gently fold in the remaining beaten eggs. Scrape the batter into the prepared pan and smooth the top.
  4. Set the pan of batter in a larger baking pan. Pour hot water into the larger pan to come halfway up the sides of the brownie pan.
  5. Bake the brownies on the middle rack of the oven for 10 minutes. Turn off the oven and let the brownies stand in the oven for 5 minutes. Remove the brownies from the water-bath to a wire rack and let stand while you make the glaze.

Make the glaze:

  1. In a small ceramic or glass bowl covered with plastic wrap, heat the cream with the chocolate on High in a microwave oven for 30-second intervals, stirring after each interval, until smooth.
  2. Pour the hot glaze evenly over the surface of the brownies.  Spread it with a rubber spatula until smooth and let cool completely. When cool, cover the pan with plastic wrap and refrigerate until well chilled and firm, about 4 hours, or overnight.
  3. To serve, cut into 12 squares and top each with pecans. Arrange the brownies on a serving plate. For the best flavor and texture, let the brownies stand at room temperature 20 to 30 minutes before serving.

These decadent brownies are so rich, it is a good idea to cut them into small squares.

Thank you, Mrs. Fields!

 

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Help your special needs child adjust to the gluten free diet

My three sons 2005

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? If you are facing a similar dilemma, you can help your special needs child adjust to the gluten free diet.

I was straightforward. I 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: http://www.exceptionalfamiliescoaching.com/2012/02/09/celiac-disease-our-nauseating-road-to-diagnosis/

 Could you benefit from the support of a parent who understands the unique challenges you and your family face? A Special Needs Family Coach offers a confidential sounding board and so much more: www.exceptionalfamiliescoaching.com

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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He asked for homework, he got it

Our teenager often spells words to us as a means to communicate, so we request spelling tests each week from the teacher.

Weekly tests means weekly homework. But, the homework is always minimal. It isn’t given with a lot of expectation.

The priority for academic learning is getting lower as he gets older. Classroom emphasis is often placed on living skills and social outings.

But, individuals with Down’s Syndrome continue to learn. They take longer to learn, but they keep on learning. As long as he shows ability, we will continue to offer him academic opportunities, regardless of his age.

He sees his brothers doing homework, so he wants to do homework.

He asked for more homework, and he got it.

Anker enjoys a healthy snack and working on his homework each afternoon.  He knows this is part of being a teenager and he enjoys his accomplishment.

Anker proudly displays his homework and receives a high five from Dad and a lot of family celebration each day. He beams with pride and stays motivated to apply himself.

Encouragement from his teacher is displayed on the refrigerator.

Could you benefit from the support of a parent who understands the unique challenges you and your family face? A Special Needs Family Coach offers a confidential sounding board and so much more: www.exceptionalfamiliescoaching.com

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Celiac Disease: Our nauseating road to diagnosis

 

Phone calls trickled in every few days when he was 11 years old.  “A.J. threw up in class today. “ The calls steadily increased and whether I was in an appointment or on a field trip with my other children, I would drop everything and run to pick A.J. up in the school office.  The vomiting continued daily.  Anticipating the mess he would leave, we carried a beach towel for him to sit and spit up on. The projectile vomiting indiscriminately landed on the carpet in the van or the backpacks.  Our family room carpet and recliner could no longer hold up to the abuse of constant cleaning and scrubbing, we tossed them away.

Sometimes we gotta laugh

Our family enjoys reminiscing about an incident we shared while vacationing at Disneyland.  We stood on the crowded sidewalk watching Mickey’s parade.  My husband stood behind A.J., while A.J. stood above a man watching  the parade from the curb.  Without warning, A.J. bent over to throw up over the stranger’s head.  Thanks to my husband’s quick reflexes, he was able to catch the barf in his hand.  I ran to the nearest restaurant for a wad of napkins and quickly cleaned up my husband’s  hand as the mess dripped through his fingers.   Everyone was so engrossed in the parade, it seemed we were the only ones who noticed.  Snickering over our family drama and the accident interrupted, we scurried away from the crowd.

“It’s all in his head”

We knew A.J. was not “ill”, he didn’t have a fever or lack of appetite.  But, he would grab his head or stomach and lay to rest as the episodes increased.  We were visiting our pediatrician frequently.  Due to A.J.’s limited speech and ability to communicate with us what he felt in his body, the diagnosis was difficult.  The doctor tested him, and eventually threw his hands up stating, “It’s all in his head”.

Our instincts knew the doctor was incorrect.  As I took notes of A.J.’s episodes, I believed it was connected to eating, possibly his consumption of cold and acidic smoothies. We needed to advocate for our child. I pushed the doctor for a referral to a Pediatric G.I.   The pediatrician agreed, but added a cynical remark.  We waited 6 long months before we could get an appointment miles away from our home.

The G.I. asked a few brief questions:

“What does he eat for lunch?”  A sandwich.

“What snacks does he enjoy”?  Goldfish crackers and Cheezits.

The specialist seemed to know immediately what was wrong.

How Celiac Disease is diagnosed

A simple blood test was ordered and the diagnosis came quickly:  Celiac Disease.   You should know however, that blood tests can come back negatively when it is indeed, Celiac Disease.

A definitive diagnosis for Celiac Disease can only come from an endoscopy/biopsy where tissue samples are taken from the small intestine.

What is Celiac Disease

Celiac Disease is a genetic disorder in which the small intestine is damaged by gluten.  Gluten is the protein within wheat, barley, oats, and rye.  Gluten must be completely avoided in the Celiac’s diet.

A secondary result of the gluten intolerance is damage to the villi.  Lactose must be completely avoided the first 6 months after a Celiac Disease diagnosis, in order to allow the villi to heal.

Symptoms of Celiac Disease

  • Abdominal cramps, gas and bloating
  • Anemia
  • Diarrhea
  • Easy bruising
  • Epitasis (nose bleeding)
  • Failure to thrive
  • Fatigue or general weakness
  • Flatulence
  • Fluid retention
  • Foul-smelling or grayish stools that are often fatty or oily
  • Gastrointestinal symptoms
  • Gastrointestinal hemorrhage
  • Infertility
  • Iron deficiency anemia
  • lymphocytic gastritis

For a complete list click here: Celiac Disease Symptoms.

Who has Celiac Disease

Children, adults and family members of individuals with Celiac Disease are all susceptible.  If you have any question about yourself or a loved one, don’t hesitate to request testing.

Celiac Disease is often misdiagnosed or overlooked.  The results of untreated Celiac Disease include epilepsy, internal hemorrhaging, pancreatic disease, miscarriages, infertility, central and peripheral nervous system disorders.

Down’s Syndrome and Celiac Disease

One study performed in 2001 showed Celiac Disease in individuals with Down’s Syndrome occurs 25 times more than the general population.  Generally speaking, 10% of the Down’s Syndrome population has Celiac Disease.  I would venture to guess many of these individuals do not know.

In our case, the doctor was not in tune with the symptoms of Celiac Disease, nor its prevalence in the Down’s Syndrome population.  While we carry our gluten-free food products to A.J.’s special needs classroom or Special Olympic events, we have not encountered another family with Down’s Syndrome and Celiac Disease.  Since many of the general population does not know they have Celiac Disease, I am confident many more of the Down’s Syndrome population have not actively pursued a diagnosis either.

More information regarding Down Syndrome and Celiac Disease:

Down Syndrome: Celiac Disease Prevalent in Children With Down Syndrome.

Cures for Celiac Disease

Besides a strict adherence to gluten-free eating, there are presently no known cures or medications for Celiac Disease.  Celiac Disease awareness is increasing among doctors and patients.

Only 5 years ago, at the time of A.J.’s diagnosis, I was ordering gluten-free products online and paying out the ear for them!  Thankfully, due to the increase of accurate diagnosis and the demand for these products, many of our local grocery stores are supplying a variety of gluten-free products.

Adjusting to a Gluten-Free Lifestyle

Adjusting to a gluten-free lifestyle has had its curve balls.  I will share an additional post how we have managed this adjustment not only as a family, but with a special needs child.

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Sometimes we miss the bigger picture

I was focused on the task at hand during a recent grocery shopping trip to Trader Joe’s. I had a mission to get in and out before the rush hour traffic began in the meat aisle. My mission was accomplished after 30 minutes in the store, and I stood at the grocery check-out. I slid my card, punched in the numbers, and took a moment to relax. My part of the job was done.

As I waited for the clerk to load my bags, I looked around the store. I never noticed the sign above the salads that read, “Take home for dinner today”.  I never noticed the rows of colorful umbrellas hanging over my head as I strolled through the aisles. The clerk and I had a good laugh when I told him.

Have you ever been so focused on a task, so focused on your child’s behavior, that you aren’t able to see the bigger picture? Just a few summers ago, I was greeted each morning by a spilt gallon of milk. My son was persistently dropping the milk carton and making a mess across our hard kitchen floor each morning.

I used to call these my “special needs moments”. These are random moments when my child’s special needs challenge me beyond my capacity. Stress begins to take its toll. But, these days the special needs moments turned into special needs days and special needs weeks.  I felt exasperated. After weeks of purchasing milk only to mop it up the next day, I was literally crying over spilt milk. When my stress was at full-throttle, I finally shared the milk-issue with a friend.

She patiently listened and gently suggested, “Maybe the milk carton is too heavy for him to hold”.

My eyes were opened. How did I miss such an obvious conclusion? I took the latest gallon of milk and poured it into two smaller drink containers. The next morning the floor was dry. The following weeks, the floor remained dry. The milk spilling problem was over. What I thought was a behavior, was in reality our son exercising his independence. His body just wasn’t willing to cooperate.  Kids with Down’s Syndrome have low muscle tone issues, another reason I “should have” figured it out myself.

Often times, we are in the thick of our child’s special needs. We are busily on task, taking care of our children and doing what we can to maintain our own composure. We miss the obvious signs and the dancing umbrellas because we are in survival mode. We miss the bigger picture.

Tonight I gazed at the colorful umbrellas with a sense of relief. They remind me how important it is to have a confidant in my life to gently help me see the bigger picture.

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A Dog’s best friend

Unconditional love is reciprocated, mutual odors are endured, and a depth of communication is shared between our boy and his dog. A deep bond between the two has developed, and this dog has the world’s best friend.

A.J. was one year old when we bought a puppy for our growing family. I was hugely pregnant with our second child, and it wasn’t the greatest time for me to learn how to train a dog. But, I read how dogs help build communication skills in children with developmental disabilities, so there was no time to waist!

Our Golden Retriever, Riley, quickly became a part of the family. Even though I grew up with the love and companionship of family pets, I did not yet understand the depth to which a dog would enrich our son’s life. He and A.J. attached to one another and put up with each others antics like no one else could.

Riley helped A.J. develop physically and socially. The various physical movements required to pet the dog, feed him, brush him, and walk him; all helped provide the trunk movement and daily exercise we needed to fit into A.J.’s developmental routine. When raising a child with special needs, it is crucial to fit specific movement and tactile experiences into their daily lives. These physical interactions with a loving dog came naturally.

A.J. had a bad habit of pulling Riley’s tail. Due to the mild manner of our Golden Retriever, Riley never tried to bite him when his tail was yanked. In fact, we still laugh at the day we saw Riley back his rear-end up to A.J. as if to offer his boy his tail. There they stood in our backyard, boy holding dog’s tail, both with a goofy look of contentment on their faces.

Our dear Riley became ridden with tumors at the age of 12. We were concerned about the toll Riley’s death would take upon A.J., so we began looking for a new puppy to train alongside Riley. The family took a day trip to a woman’s farm where she bred Golden Retrievers. Parked in her driveway, we took a moment to pray together, asking God to help us find the right puppy for our family.

Several adorable puppies played around our feet, and each of us had our eye on a different one to bring home. I told the woman our concern about A.J.’s reaction to the impending death of his reliable companion. She stepped inside her home and came out with her favorite puppy in her arms.

“Take this one, I was going to keep him for myself.” she said.

We trusted her and brought home her favorite puppy. We named him, “Petra”, which means “The Rock”. He is named after our all-time favorite Christian rock band.

A.J. and his brothers fell in love with Petra. Riley welcomed the puppy and nurtured him for a couple of months before his death. A.J. emotionally handled his passing better than we expected. How loving our God is, to take care of these details and concerns in our lives.

“Petra, you are home! I came back!”, AJ walks off the school bus and routinely heads directly to greet his companion.

“Look Petra, your boy is home,” I add.

They greet each other with sloppy kisses and a long hug. A.J.’s speech and language skills increase with his interactions with Petra.

“You are okay. Go outside boy. You go potty.”

“Okay, come on in now. You are a good boy.”

Recently A.J. told me a story about his Auntie’s beloved dogs playing with their friend Petra. He told me, “Maize and Jax and Petra are chasing outside.”

“What are they chasing?” I ask.

“He, Maize and Jax and Petra are chasing a squirrel.”

It has taken our son 15 years to answer a “What” or “Why” question with a full sentence. His story about chasing a squirrel required putting several words together with a little creativity and recall. I was thrilled. The doggie adventures and interactions are constantly helping develop his communication skills.

Petra keeps pace with A.J.’s needs as they walk. Together they walk, run, and rest in the shade. It can take quite a while for these two to make it around the block!

A.J. and Petra often have a chat under the kitchen desk. AJ shares special pictures of his Aunt’s dogs with Petra. Petra obliges and enjoys the pictures with his boy.

Always available, willing to listen, patient when the words take a while to form a complete thought; Petra is an unconditional friend. And his boy is the best friend a dog could ever dream of having.

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Running a mile with my special needs child

One of the biggest issues with Down’s Syndrome individuals, is their overall low muscle tone and potential weight gain as they get older. It is a challenge to keep our own teenager regularly active and engaged in physical activity.

We are always trying to incorporate movement and exercise into his routine. Among other exercise goals for AJ, is the goal to walk a mile, without stooping, stopping, or resisting.

My husband has carried AJ on his back too many times to mention. AJ has not had the endurance to walk his way through an amusement park, zoo, or family outing, and before the adventure is even half through, he climbs onto his Dad’s back. When he was too big to be carried or pulled in a wagon, we considered using some kind of adaptive walking assistance for our family trips. But we weren’t ready to give up the goal for walking just yet!

Thanks to his wonderful 6th grade Adaptive P.E. teacher, Mr. Ray was the first one to motivate AJ to make it around the track for the entire length of a mile. No doubt, every time AJ stooped to the ground to play in the dirt, Mr. Ray cheered and nudged him to get back up and keep walking. What patience Mr. Ray had for our boy.

We continue working on the goal to walk a complete mile. We communicate to P.E. teachers and caretakers not to permit AJ to stoop on the ground during field trips or shopping errands. We are confident he is healthy and capable enough to remain standing and walking, no matter how slowly.

We continue to keep this long-term goal in mind. Now four years later, AJ is able to walk a mile around the track, shop without stooping, and even willingly take part in the Special Olympics track team. Through the financial gift of a loving family member, we purchased a treadmill this winter to help incorporate his daily movement.

Lately, AJ makes requests almost daily to go run on the track. What he really means is “walk”. Well, run for 3 seconds then walk. It can be easy to get discouraged by the accomplishments which come so slowly. Instead, I choose to celebrate his thought and intent; both are great achievements!

Today we went to the park together to “run” along the path. “To infinity and beyond!” he yells, spreading his arms like Buzz Lightyear as he bursts out running. He ran a few yards in front of me, then began to walk. We walked arm in arm, then I walked briskly ahead as he continued to walk his slow steady pace toward me. Ten minutes into our walk he began saying he was “all done”. I ignored him. Sometimes we get more accomplished that way.

As we completed our walk and headed back toward the van, AJ waved his arms with accomplishment, “I ran track”. We drove to his favorite local spot for his “groovy smoothie” reward.

We have both come a long way. He is willing, able and happy to walk a daily mile, and I am more willing, able and happy to accept his growing effort.

Do you have a child who is difficult to get moving? Leave a tip that works for you.

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