Operation: Button your pants continues

Time slips through our fingers. It has been almost 3 months since we began Operation: Button Your Pants! To refresh your memory regarding our special challenge to teach our 17 year-old son how to button his pants, you can read about it here: http://www.womangonewise.com/2012/01/30/operation-button-your-pants/.

Because the days do pass so quickly, I am more deliberate in setting practical goals for our growing young man. Teaching a new skill to a child with physical or developmental challenges requires breaking the skill into small steps. Each step is carefully approached with patience. The time it takes to acquire the step is not as important as keeping each goal in mind.

I am happy to say A.J. has passed each of these first steps:

Operation: Button your Pants

  • Work on pincer skills by playing “Feed the Dog” every day. Celebrate every attempt!                   Check!
  • Breakdown the steps to buttoning. Practice one step every day. Celebrate every attempt!         Check!
  • Progressively practice smaller button holes.           Check!
  • Practice on a pair of pants.           Check!

What a surprise to see A.J. enjoying the process so much. He is so pleased with his new accomplishments that he initiates the “Feed the Dog” game and button cards. Without any prompts from us, he practices daily.

The Motivating Factors

Personal pride for his accomplishments is not his only motivating factor for working on the buttons. I have to admit, he has become a little sneaky.

He knows he cannot access gummy treats whenever he wants, so he has learned to zip through his button games and exercises and go directly to the treat cupboard to get his gummies–multiple times a day! It took me a couple of weeks to catch on to my sly boy. I guess that means he has trained Mom pretty well.

I was not thrilled with the notion of introducing sweet snacks as a reward, but the fact is treats are highly motivating. When a skill needs to be taught to a highly frustrated or stubborn individual, I tell you, a reward that works is worth it!  But, because the new skill  became so easy, its time to create the next step of challenges toward buttoning his own pants.  This means he will have to really work for those gummies again!

A.J. Hits a Roadblock

Whenever I have the opportunity to interface with Occupational Therapists or Behavior Management Consultants, I tap their brains for any resources they have for teaching pant buttoning. One of the most important tidbits of advise I received was to place a pair of pants on his lap as though they were on his body. This way he will not learn the button skill backwards!  Backwards buttoning had never crossed my mind.

I found the largest and oldest (softest) pair of jeans in my husband’s closet and placed them on A.J.’s lap. First I sat behind him on the floor and placed my hands on his hands, trying to guide the button through the hole. That did not work well.

A.J. had his own idea to  place his hands on my hands as I slipped the button through the hole.  That was a good idea, because he could feel the way my wrists turned and how fingers have to move behind and beside and in front of the button.  Did you realize you move your fingers and wrist that much when you button your pants?!

Finally, I sat beside him as he attempted to slip the metal button through the stiff little hole. Frustration mounted. He grunted and motioned for me to help. I kept my hands away but sat closely to encourage his efforts. He must wonder why this button will  not cooperate as easily as the buttons he has been practicing on.

Disappointment set in for both of us. Eventually, I placed my hands on the waistband, giving him a sense of support. A week or so went by without any success.  Both of us have ignored those jeans lately. Feeling a little defeated myself, I have not taken any further steps toward getting those jeans buttoned.

I have my finger and hand issues due to arthritis and am aware of adaptive tools for everyday tasks. After a little online research, I discovered a handy tool to help with buttoning pants. I stared at the picture and considered what it would mean for A.J. on a daily basis. Not only would he have to carry the tool on his person daily, but it would be very difficult to get him motivated to button his own pants after using the tool. Any adaptive tools at this point will be our last resort.

Give him every opportunity to excel

Our philosophy since his infancy has been to give him every opportunity to excel, and then let him show us what he can do. If I resort to the tool so soon, I would be cutting the process short.  Through his willingness to continue buttoning  he is still showing us a desire to develop.

So, I called on the school Occupational Therapist. She agreed it is best to stay away from the adaptive tool at this time. She suggested cutting into the buttonhole–a little skill I know about from my earliest days of learning to sew. Then I got the idea to cut up the waistbands from a few pair of old jeans and make a new button board. This will be my project for the week.

Operation: Button your pants–Step 2

  • Create a button board made from jeans.
  • Clearly mark the Top of the board to be closest to the body.
  • Practice short amounts of time to limit frustration. Celebrate every attempt.
  • Do not give gummies until at least 3 attempts are made on the denim board. Celebrate attempts!
  • Practice every day.

Cross your fingers!  Well, that would mean I believe in luck. I don’t. Through prayer and hard work we will keep taking steps towards success!  I will let you know how it goes.

 

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Operation: Button your pants

It is easy to take certain developmental milestones for granted when you have typically developed children. I never had to teach my second and third child how to use their pincer grasp. I may have tilted their wrist a time or two when teaching them how to use their knives correctly, but they were able to grasp the knife and complete the task successfully on their own. I know I never had to teach them how to button.

Things are different with a child who has low-muscle tone issues. Knife work, shoe-tying and slipping buttons through tight little holes are skills our 17-year-old son does not yet have. With ten stubby fingers and limited dexterity, A.J. has weak fine motor skills. I confess we haven’t required a lot of detailed work from those stubby fingers. Instead, we have spent the last 17 years working largely on speech acquisition, writing and reading skills, behavior management and social skills.

I began teaching A.J. how to read as soon as he could sit up. I consumed every book I could find on the subject of teaching children with Down’s Syndrome how to read. He learned to spell both phonetically and by sight. A.J. presently reads at a third grade level and has a great interest in sounding out words and writing each day. His interest in words is exciting! But, teaching him how to button his pants, is a different story.

Thankfully, Land’s End has cargo pants, denim and khakis with elastic waist-bands. Land’s End receives an order from me twice each year. However, A.J. will soon grow out of their big boy pants and he will be left to wear sweats every day if we do not soon get this buttoning skill achieved.

Each year I request the Occupational Therapist at school to help him with his fine motor skills. He has received minimal assistance. We consider the ability to button his own pants a key independent living skill. So, it is time for me to get to work! Last week I purchased the fine motor game, “Feed the Dog”. It has a large pair of tweezers–just the right size for A.J. to try to manipulate without frustration. Whenever we attempt a new task, it is always helpful to find items with a Disney or dog theme: two of A.J.’s favorite interests. I also purchased a game board to practice large button skills. Now it is time to create a plan for our family to attempt together, “Operation: Button your Pants”.

Operation: Button your Pants

  • Work on pincer skills by playing “Feed the Dog” every day. Celebrate every attempt!
  • Breakdown the steps to buttoning. Practice one step every day. Celebrate every attempt!
  • Progressively practice smaller button holes.
  • Practice on a pair of pants.

Week One Success

Excited to see what I brought him, A.J. pulls the doggie game out of the bag. We placed 30 plastic bones in the doggie bowl, and I model the use of the tweezers. A.J. takes his turn, and is unable to pinch the tweezers closed. Frustrated, he grunts at me several times. I ignore the grunts, and he quickly ceases the resistant sounds. Placing my hand over his, I attempt to place his fingers in the proper formation for pinching. Quietly, I  grunt with my frustration! His fingers are confused. The two of us fumble with the tweezers until finally he is able to pinch them and pick up a bone.

Each step of the game (designed for 3-year-old children), is met with frustration. The game requires him to continue the pinch in order to get the bone to the doggie’s mouth. Then the tweezers have to turn just-so, in order to get the bone into the doggie’s mouth. Alas, he is able to do it. After 10 bones, I cheer and invite him to stop the game. He presses on.

Willingly, he opens the game and enjoys feeding the doggie the plastic bones each day. His pincer grasp is strengthening and he is enjoying the new skill!

Have you ever tried to break down the steps to placing a button in a button-hole? It is a long and challenging process! Operation: Button your Pants may take us some time. I’ll let you know how it progresses.

What skill comes after the ability to button his own jeans? I am afraid it will be teaching our young man how to shave. Oh boy, talk about a challenge!

 

 

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5 Tips to help an overwhelmed child enjoy Christmas

Christmas is quickly approaching, and our kids are so excited, aren’t they? The smells of Christmas dinner, the anticipation of visiting loving family, the sight of brightly covered mystery packages under the tree, and the squeals of laughter and conversation can all serve as sensory overload for a child. Whether you have a young one at home or child with special needs, some of our kids become overwhelmed on Christmas day.

Consider these helpful tips to make the special day more enjoyable for all:

Pace the opening of gifts
When it is your child’s turn to open gifts, he or she may not be ready to proceed.  Often times, the opening of gifts is the most overwhelming time of the day for a child.  They are asked to wait and take turns, or they rip the gifts open so fast, they become overwhelmed by the very prospect of all the colors, noises, and excitement.
You may need to reconsider the pace which gifts are open. Consider different gift-opening options.  You might try opening a couple of gifts at a time, then take time to open and play with them in another room before unwrapping the rest of the gifts. You may choose to keep some gifts unopened or hidden until a later time.
You know when your child’s stress meter is rising. Be alert and free to roll with it.

Allow your child to explore gifts on their own time clock
We adults have our own expectations about what Christmas day “should” look like. When living with an overwhelmed child, our expectations often clash with our child’s needs. Try to become aware of your own expectations and be willing to adjust for your children.  You may want to start playing with that cool toy and engage your child in exploration, but your child may not be ready.  Let your child lead the way of exploration when he or she is ready.
Offer frequent praise and nurture
When all the family members are engaged in conversation, television or games, it is easy to overlook your child for a good period of time…..until your child has an explosion. When overwhelmed for a long period of time, some young children or kids with special need’s begin to act out. The stimuli has been mounting within them and they explode!
Check in with your child frequently. Cuddle up with them, give them eye contact and specific praise. Praise the positive behavior that you desire to foster. What kind of praise reinforces your child the most? Is it a high-five, a kiss, a tickle game, or an m&m? Be generous with your reinforcements! They will go a long way to sustain your child and possibly prevent the next explosion.
Take calming breaks
Teach your child to take a break from all of the excitement. Through a hand signal, an index card, or a tap on the shoulder; your child can learn how to say, “I need a break”. Just as you are learning when to offer those breaks, your child can learn how to recognize when they need one. Until that time, consider taking your child on a brief break every hour to hour and a half.  The break may last about 10-20 minutes.
Find a quiet room to hang out together, go for a walk in the fresh air, or walk out to the car to get something together. Does your child have items that help them calm down? Put those items in a small backpack to keep accessible on Christmas day.  It may include a blanket, a squishy ball, lotion, or a small dvd player with their favorite cartoon. When the schedule of the day’s events are so unreliable to a child, their familiar items offer a calming effect.
Calming breaks can go a long way in preventing a child from becoming overwhelmed.
Make a game plan with your spouse
Before the big day, talk about these tips and your plan to implement them with your spouse.  Discuss the values to your family when you implement these tips.
What roles will you share during the day?  What vulnerable moments do you anticipate in the day?

When it’s all over…learn from the day

When the day is over, take some time to mull over your child’s day.

What things worked well?

What points of the day were more stressful for your child?

What can you do differently that will help the next big family event run more calmly for you and your child?  What will you do the same?

Jot down some notes and keep them in a place to remind you as you approach the next big event.  I like to keep notes on my cell phone calendar and in other strategic places I turn to when planning for the next season.  These reminders will help you be mentally prepared for the next event.

Take heart, tapping into your child’s needs and fostering positive outcomes is a process. Learn to give yourself some grace, as you live through this journey together.

Blessings to you and your family, this Christmas season!

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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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Did anybody see him?


It was one of those hectic afternoons when we were rushing between appointments and practices and I was driving on a busy thoroughfare to get to our next destination. We sat in the middle of traffic waiting for the green light when we viewed a man on the sidewalk struggling with his motorized scooter-like wheelchair. His body was hunched over and his feeble knees buckled together as he grasped the back of the scooter. He was clearly in distress.

Sandwiched between cars and unable to turn right, I drove along with the traffic once the light turned green. My boys and I were each disturbed by what we just saw. What can we do? What will we do? We drove 3 blocks ahead, hitting every red light in the heavy traffic, before we were able to make a U-turn and drive back to the man in need of help. It was taking so long to backtrack over three more blocks of heavy traffic and red lights.

My boys exchanged their thoughts, “I think someone else has seen him and helped him by now.”

Finally we came to the last stop at the top of the hill, where we could see the man still struggling on the sidewalk. The hot sun was beating down on him and he had barely made any progress with his scooter.

The boys continued their discussion, but this time with surprise, “A few hundred people must have passed this man and no one has stopped to help him.” Did anybody see him?

We turned into a fast food parking lot and the boys piled out of the car. My oldest son, with special needs himself, threw his little Cars backpack over his shoulders and struggled down the small but steep hill to the sidewalk. He didn’t know what this new adventure would entail, but he was more than willing to find out.

“Can we help you, sir?” we asked the young man as he stood along the busy stretch of street.

“Yes”, his words slurred as he explained, “the batteries in my scooter have died and I need to get them recharged. If I bring it to that restaurant over there, they have a special plug I can use to charge my scooter”.

Staggering around the scooter, the gentleman sat down in the seat with a breath of relief. His forehead and red shirt were both dripping with sweat as he took in deep breaths of air. He had exerted so much energy in the hot afternoon sun.

Two of my boys grabbed the sides of the scooter and began to push. The scooter resisted, lacking any mobility without the battery power. Anker peeled off his Cars backpack and shoved it at me. He was compelled to push the scooter alongside his brothers.

Slowly we walked down the sidewalk, three boys pushing with all their might to mobilize a stubborn scooter and its determined owner. Taking small steps, I walked alongside them holding a little Cars backpack stuffed with snacks and small treasures belonging to my own special son. “This is what matters most in our lives”, I thought. No schedule or practice or hustle and bustle can replace my boys investing in the life of someone in need.

I held the door of the restaurant open as my young men figured out how to push this scooter and its precious cargo over the door’s frame. My 14-year old rearranged a table and chair as the young man directed him how to plug in the scooter to get its much-needed juice. The boys backed the scooter in to the corner, shook the man’s hand, and we quietly left the busy restaurant.

There was no applause that day, there was no ribbon for their effort, there was no money raised or meetings necessary to perform a mission just blocks away from our home. I challenged our boys to tell no one but their Dad about their activities that summer afternoon.

The boys showed no concern about showing up late for practice when we finally arrived at the field. They had just experienced first-hand the deep sense of joy and satisfaction that comes from placing someones needs before their own.

Oh, that our kids would not strive for success or applause by jumping through the hoops and demands of our culture! Instead, may they pursue the heart of God and love people as though they were serving Jesus Himself.

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A new day: Our special need’s summer vacation, pt.2

Hume Lake 2011. The Lord is Good!

“Yes, boat”, our oldest boy said with a huge grin.  His eyes scanned each of ours as he awaited our response.

A glimmer of hope rose up in me, “Do you want to go on the boat this morning?”

“Yes, boat”, he said a second time.  It was our third day of summer vacation, and our boy with special needs was beginning to drop his guard.  He was slowly adjusting to the change in environment and opening himself up to fun activities.

We barely finished breakfast, but we all intuitively knew to take advantage of the situation.  No one bothered to put on their bathing suits or sandals, instead we scurried off to the boat house.  This time we avoided the creaky wooden dock and the rowboat which rocked so much it shook his footing.   I stopped to pick up paddles and life jackets while the boys walked straight to the kayaks—the red ones, because red is AJ’s favorite color.  It made him equally happy to adorn the red life jacket.

AJ cautiously walked through the muddy path, weaving in between the other boats, then awkwardly swung his leg into the kayak.  Dad held the boat steady while brother helped AJ sit down.  The kayak was a good choice.  He was able to sit securely on stable land while his Dad gently slipped the kayak into the lake.

The rest of us stood on paddle boards and glided alongside the kayak.  He was not protesting with the anxiety he displayed yesterday.  Quietly grunting to express his discomfort, he suddenly changed his tune. “Yea!” he yelled and then applauded his own accomplishment.   I dug my paddle through the water as my toes dug into the board.  Our other two boys stood beside me gliding through the lake on their own boards.

My youngest boy teased me and reached his paddle out to nudge my board.  My feet changed positions to regain balance, but down I went.  I crashed into the water with my skirt flowing up around me.  Thankfully, most of the campers were still eating breakfast and there were no other boaters on the lake.  With little grace, I crawled and slipped my way back on the board.  What a great morning.  We floated and laughed and enjoyed each other for a couple of hours.

This is a rare occasion.  Do you know how often some of us special needs families are able to enjoy adventures together?  Often times either my husband or I hang out in the hotel room watching Lion King with AJ while the other parent takes the siblings out for fun.  What a gift we experienced this morning; two parents together with all of our children enjoying the lake.

Carefree in the kayak

We pulled our boards and the red kayak ashore after a great morning of water fun.  The boys stripped off their life jackets when AJ requested, “more boat ride”.  So, out went he and his brother on a second adventure.  This time he was done after 10 minutes, but he was able to build one success upon a previous success.  The praise and the high fives and the gummy bears were flourished upon our boy for the happy choices he made.

The family was encouraged with progress while the heart gives credit and gratitude to our Lord. Thank you Jesus, for a carefree spirit in our boy today.  Please give us more. 

I’m going to pray this prayer relentlessly.

AJ enjoyed many moments of relaxation on vacation

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Planning for the (Un)expected


Shopping, educating, and cooking are some of my favorite things.  So, when I received the offer to go on a “Mom Shop Along” at one of our favorite grocery stores, I jumped at the chance.   This was an opportunity to communicate my grocery shopping preferences as well as our special dietary needs to the Raley’s personnel.  (Raley’s writes about our family and my gluten free tips here:  June Mom of the Month.)

The day of our Mom Shop Along, I began to get cold feet.  Raley’s management was going to follow my boys and I as we shuffled through coupons, reached for products and read labels through every aisle of the store.  What was I thinking?  I agreed to come at 4:00 in the afternoon; not only a down time for my kids, but a crowded time for the grocery store.   As I pondered the (un)expected things that could potentially happen, I considered cancelling.

Living in the community with a special needs child-or even juggling multiple children, calls for a certain state of mind.  I can opt out of life and isolate myself and children because day trips are too stressful, or I can choose a “can do” mindset.  I told myself the words I often use to motivate my boy, “I can do it”.

Then I began to think through the effective tools I use to help our special needs family be successful in the community.

Communicate with significant others before the event

In the event our shopping trip became too stressful for my son, and honestly, in order to manage my own anticipated stress, I needed a plan.  I contacted the Raley’s personnel to inform them I needed to assess how my child was doing before and during the shop along.   They were agreeable.

Ahh, step one of operation de-stress was taken care of before we arrived.

Have a back-up plan for your child

As always with special needs, you need a back-up plan.  It serves as an escape and survival plan if the event becomes too stressful or overloaded with stimuli.

The back-up plan may include the following:

  • an early exit
  • spouses bring both cars if family members want to remain in the event uninterrupted
  • discuss pacing the child’s activity level with a quiet time and quiet place
  • bring necessary items in a specified bag to soothe the child (lotion, paper, book, textured ball)
  • bring behavior chart, and don’t forget the frequent verbal praise and rewards
  • inform your host about your plan and make any gracious requests as needed

Today my back-up plan included frequent verbal praise for making good choices, as well as the reminder of his favorite smoothie he would receive at the end of the event.  If he became too grumpy (which is often the case given  a stressful situation in the late afternoon), I would be sending him to hang out in the van with his brother.  (Safety note:  It was not hot outside, windows are cracked, both boys are legal age to be in the car alone, and we often come equipped with paper, pen, or dvd player to help him pass the time).

Educate those who will be with you

I am always learning, when I let others know our special needs, they become team players with us.  Educating others in the mission of helping your child and the event be successful, gets others on board.  When they understand why you are bringing a chart, gummy rewards, or addressing behaviors a certain way, they will often become an emotional and physical support person for you.

What special needs family couldn’t use another team player in their corner?  I am finding when I am open about our needs and plans, I am less likely to feel the stress of sticking out like a sore thumb.

Stick to your plan

Under the pressure of being watched, stared at, or misunderstood, do not shrink back my friend.  Stick to your behavior plan or your operation de-stress plan.   Be there for your child.  Remain consistent, confident and even-tempered in order to carry out whatever your child and your family needs.

I believe in being respectful and courteous of others around us, but my mission is first and foremost to my own family.  If I bend and change to the pressure of how others perceive us, I will not be the strength and consistent parent my special needs child requires.

Enlist buddies

Thankfully, my son has brothers who are attentive and compassionate buddies to him.  I communicate the plan with them and they are team players.  The brothers have been talked with and have the information they need to know in order to help the afternoon go smoothly for all of us.

Sometimes my youngest son doesn’t understand it all and he doesn’t really need to.  I am always trying to strike the balance between expecting the siblings to be vital family members, but not burden them with responsibilities which do not belong to them.

Mommy-helpers are always a great assistance to any Mom who is juggling multiple kids.  I was given the great advice years ago to enlist a young girl, not quite babysitting age, to hang out with us when we run errands.  Now that my son is a teenager, we have a peer-helper; another teenage boy who comes to hang out with our son.  Together they play Wii, walk the dog, and swim.

Express your gratitude

I don’t know if those in our lives will ever comprehend how vital they are to our day-to-day survival sometimes.  Having the opportunity to be active in the community with people who are willing to be flexible and understanding of our special needs family is a true gift.  It may even be a rare gift.

I want these people, including my own children, to know how grateful we are for them.  Whenever we have the opportunity, we write thank you cards, provide financial support, and try to express actions and words of gratitude for helping us make life more enjoyable and successful.

Thanks to Raley’s, by the way, for taking the time with us on the Mom’s Shop Along!  They were generous with their time, questions and note-taking, in order to provide even better customer service to the community.

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I said I’d never do that

Ever since our first strolls around the neighborhood, I would observe a little yellow school bus pulling up to the same house, picking up a boy with special needs for his school day.  I formed many opinions about this, and made a silent promise to my own baby with special needs, “Never will a little yellow bus come to our home”.  I clung to this “Never” promise over the years, for reasons I may get into another day.

One day I spouted off some other deep conviction, a “Never” to a friend.  She kindly reminded me, “Bonnie, you always said you’d never wear stretch pants, and you’re wearing them today.”   I was a little bewildered by my inconsistency, but continued on through the years with my declarations of “Never”.

My latest, “My kids are never going to that rich hoity- toity high school”.  Countless friends and family members have heard me repeat this over time.  But every day I creep among the new sports cars and pristine SUV’s with our 8-year-old van in the school traffic.

I stop in front of the hoity- toity high school and my son leans over the seat for his blessing, hug and prayer. It turns out; there are great opportunities for him there.  He is happy, challenged, and making great choices as a freshman.

I have been pondering my “Nevers”.  Have they been spoken in pride or even fear?  Have I been making projections into a future I know little about?

Little did I know about the benefits of a little yellow school bus which now comes to our home.  Our son enjoys the independence, the soothing movement of the bus, the shared experience with his friends.  He runs to his seat each morning with a wonderful anticipation.  I give him a hug and a prayer, and with a grateful heart, I wave goodbye.

I am discovering God has blessings waiting for me when I release my “Nevers”.   My presumptions, my lack of trust, my inhibitions stamp a large Never – period.  Now I am allowing God to replace commas for my hasty periods and I am embracing the process with a grateful heart.

 For my thoughts are not your thoughts,
   neither are your ways my ways, declares the LORD.
 For as the heavens are higher than the earth,
   so are my ways higher than your ways
   and my thoughts than your thoughts.

Isaiah 55:8-9

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Our nauseating road to diagnosis: Celiac Disease

May is Celiac Disease Awareness month

Phone calls trickled in every few days when he was 11 years old.  “AJ 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 AJ 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 AJ, while AJ stood above a man watching  the parade from the curb.  Without warning, AJ 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 dripping hand.   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 could tell AJ 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 AJ’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 AJ’s episodes, I believed it was connected to eating, possibly his consumption of cold and acidic smoothies.   I pushed the doctor for a referral to a Pediatric G.I.   Cynically, the pediatrician agreed.  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 AJ’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 AJ’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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Running the 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, because AJ has not been able to walk his way through an amusement park, zoo, or family outing.  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 let P.E. teachers and caretakers know we do not want AJ to stoop on the ground during field trips or shopping errands.  We believe he is healthy and capable enough to remain standing and walking, no matter how slowly.

We continue to keep the 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.  But 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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