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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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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We swallowed our pride and invited in help

 

Our Family

Some months the stress and challenges of raising a child with special needs is pressing, tiring, even close to unbearable. I say close, because God always comes to the rescue when we’re in our greatest need!

On the other hand, there are weeks when life becomes status-quo…as far as special needs families go. We can laugh as a family like only a family who knows, can. These days, we are in challenging/laughing mode.

Our sweet, funny boy with Down’s Syndrome, has gone through his own tough times. In his pre-teen years, he developed behavior that is difficult to manage. It stumps his social and intellectual growth. It stumps our family’s ability to do things together in and out of the home. And it stumps me—the Mom with the M.A. in Marriage and Family, the youth worker, the educator of family life. After the trial and error of contacting “helpful” professionals, we requested the best, oldest (sorry if that offends you young ones), and most experienced behavior specialist.

Six months later the old male version of “The Nanny” walked into our home. I will call him Ned. Thankfully, he was not sporting a camera crew, but he interviewed, scrutinized, analyzed, and labeled our every move! How unpleasant to have all of our parenting and child’s idiosyncrasies listed in a ten page document.

Ned touts his prescribed behavior plan as if it is his religion—the only way, the right way. He talks down to us if we don’t entirely agree with him. My husband and I sit open-postured, trying to remain humble as we consider a new view. Silently, we are struggling with some of his philosophies. We burst out laughing sometimes when he leaves, yet we are ever so willing and desperate to try his plan.

Ned trained us, followed behind us and coached us. He plopped himself on our chair while I was cooking, or by the pool as the boys splashed and played. He entered our home for hours of observation. Sometimes Ned gave us a thumb up for his approval or pulled us aside to the dining room for a “talk” if we needed to respond differently to our child. At his direction we have role played, high-fived each other, yelled “yeah, great job!” louder and more enthusiastically than ever before. It has worked wonders!!

In a short amount of time our boy is productive, happier, using more effective communication, and negative behaviors are dwindling away. But it is not the end. Our family is in the midst of a grand process. Together we are struggling and giggling as we work it out. We can’t afford not to. As long as we desire our children to thrive and our boy to live his best life possible, we will diligently stick to the plan.

Have you ever thought about seeking outside support for your personal or family struggles? What keeps you from pursuing help?

I’d love to hear how you have benefited from the help of pastors or other professionals in your life.

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