Doctor Appointments with Down Syndrome

Every summer our visits to the doctor increase.  It seems more likely they would in winter, but for us summer is when I schedule well-child check-ups and any extra appointments like yearly eye exams for my glasses-wearing children.

Recently, at a two for one visit, Joseph and Maria had their well-child check-ups.  I was just being me, when their doctor referred to me as a Gentle Steamroller.  I'll get to that in a bit.

According to the National Down Syndrome Society, Joseph needs extra doctor appointments specifically related to issues known to become problematic for people with Down syndrome.  Thyroid checks, neck x-rays, hearing and eye exams, sleep studies, cardiac check-ups - these are all medical issues that need to be addressed.

This handy guide from NDSS lists the recommended health care needs of children with Down syndrome by age.  I refer to this each summer when Joseph visits his primary care doctor for a well-child check-up.

Checking my list is the easy part.

Children with Down syndrome often do not like to be touched or poked upon in any way, shape, or form when it comes to doctors.  Children with Down syndrome also have increased hypotonia (low muscle tone) and for some reason this hypotonia allows them to get their bodies into contortions of epic proportion.  These said contortions make it nearly impossible for a one-poke blood draw.  Measuring blood pressure?  Again, nearly impossible.  Joseph can twist his arm within the ballooned cuff, making the medical assistant work for every dollar she makes.  And eye exams?  Better eat my Wheaties that morning.

I've endured my share of doctor appointments over the years.  Eye appointments, hearing exams, echo cardiograms, weight checks, x-rays, vaccines, blood draws, ear checks, oh the ear checks of toddler days.

I've developed my mom at the doctor style, relived my cheerleader days, and learned a few tricks along the way.  In case you find yourself needing to take a child with Down syndrome to the doctor, I'll share with you what I've learned to date.  I'm sure these tips can be used for any child, I just happen to have learned them by being Joseph's mom.

What I Know About Taking a Child with Down Syndrome to the Doctor

#1 - Joseph is closing in on 9 years old in August and doctor appts. have gotten MUCH MUCH better.  Not great, but better.  It's been a long and bumpy road getting to this point, which is still NOT great.  As Joseph matures so does his behavior and understanding of what's happening at the doctor.

Here's a year by year account of blood draws.  It's not for the squeamish.

Birth - 1 year (2 phlebotomists and me)
Blood draws were miserable.  His hypotonia, tiny, rolling veins, and weakness was almost unbearable.  Three to four pokes was the norm before getting a "good vein".  He was so tiny and easily held still, but his weak cry brought tears to my eyes every time.  I  knew it must be hurting, but he hardly had the energy to let us know.

1-3 years (2 phlebotomists and me)
His heart nice and strong now, he was strong and loud.  He could wiggle out of every hold.  The phlebotomist would always have an assistant holding his elbow.  The needle would go in, he'd wiggle his shoulder and the vein would be gone.  Every time we went in for a blood draw the phlebotomists were amazed.  A couple of the girls actually had nicknames for him like Houdini and Mr. Magic because he could get his elbow out of any hold.

3-5 years (2 phlebotomists and me)
Blood draws were rare in this time period.  I don't have much recollection of what it was like.

5 years - current (3 phlebotomists and me)
Joseph was having a lot of intestinal troubles during this time, i.e. severe constipation which eventually led us to see an endocrinologist.  He checked his TSH and found him to have hypothyroidism.  The blood draws quickly increased to every 2 months.  Joseph is VERY strong and will fight without abandon.  A particularly difficult blood draw was last summer.  We wrapped him in a sheet, one assistant took care of his legs, I had him on my lap with his head locked in under my chin and bear hugging him.  The other 2 phlebotomists were in charge of the actual blood draw.  He was not going to give up; we were all sweating terribly.  And then another angel nurse directed a fan right on us.  That tiny distraction was just enough that the poke "took" and within minutes we were outta there.

We've endured our share of blood draws similar to the one I just shared.  At the last blood draw we dropped back down to only 2 phlebotomists and me.  We are making progress.  Joseph is making progress.  Life is good.

Take heart, mama and daddy of a child with Down syndrome, doctor appointments will get easier.  Time and maturity do so much in the way of easing a child's anxiety.

#2 - Practice, practice, practice!  Play doctor at home.  Does that need much explanation?  In the toddler years shine a flashlight into your child's ears, have them say "aahh" after brushing their teeth, tap and activate their knee reflexes while getting them dressed.  Basically, do doctor and dentist stuff at home as often as possible.  New experiences cause freak outs.  Don't let the doctor's actions be new.  Give your child plenty of opportunities for practice at home.

Now that Joseph is older and can understand my explanations better, I talk about the doctor a lot at home.  A couple days before an appointment I start sharing all the things I can think of that the medical assistant and doctor will be doing to him.  For example before an endocrine appt. I'll tell Joe that he's going to step on the giant scale and his height will be measured up against the wall.  I remind him what it feels like to have his blood pressure taken.  Then we take turns squeezing each other's arm as hard as we can.  I show him how to feel my pulse; then I feel his.  I feel his thyroid gland and tell him how the doctor will feel his neck to see how big or small his thyroid gland is.  He'll have to let the doctor push on his tummy.  I talk A LOT about what will happen.

PRACTICE, PRACTICE, PRACTICE

#3 - Leave the fussy clothes on the hanger and opt for comfortable, easy on/off clothing.  This is so important.  And it makes total sense, right?  I like to schedule multiple appointments in one day.  That means lots of on and off of the clothing.  I have Joseph wear his most comfy, elastic waist shorts or pants with a favorite t-shirt or hoodie (depending on the season).  I keep my outfit simple, too.  If a wrestling match breaks out, I want to be ready.

#4 - Learn to be a Gentle Steamroller.  I've practiced every possible doctor office scenario, talked myself to sleep about what'll be going down at the doctor, and dressed Joe in comfy clothes.  Now we're there and he's decided that no way, no how is the doctor going to touch his thyroid gland.  My standby line has always been, (said in the sweetest Michelle Duggar voice)  "you need to cooperate or I'll force you".  That's what I said when Joe's pediatrician referred to me as a Gentle Steamroller.  A compliment, I think.  I guess it basically means I will not take "no" as an answer from my kids.

I've also taught Joe to say thank you to all the medical staff he encounters.  It's so sweet when he says thank you to the blood drawing phlebotomist as she places a band-aid in the crook of his arm.

I think having this mindset as the mom going into the doctor appointment reassures Joe that the exam is necessary and it's going to happen no matter what.  It's not optional; bad behavior will not get him a ticket to home.  My time is valuable and we'll get done what we came here to do.  Harsh?  No, just reality!

#5 - If you're gonna be a gentle steamroller then holding tightly is required.  In years past, before Joe accepted an ear exam, I had to hold him on my lap, one leg over his legs and one arm around his chest, the other forearm holding his head.  He wouldn't cooperate so I had to force him.  I've found that holding him as tight as I can to my chest is helpful.  Gradually I've been able to ease up on the tight holding.  Ear exams?  Now he asks for them.  Crazy, I know.

#6 - Encouraging words are vital.  On days when my emotions could easily get out of control, I find that pulling out my old cheerleader voice helps me get through the difficult exam.  Telling him how I expect him to act as if he's already acting that way sometimes gets results.  Does that make sense?  Talking him through it, talks me through it, too.  I say things to Joe like:

Wow!  Great job, Joseph.

You can do this.  You're strong.

You're such a good boy.  Look how still you can sit for Dr. _______

Awesome job!  You can let Dr. ________ touch your tummy.

Show the doctor how wide you can open your mouth.

Great!  You can tell Dad how much you weigh.

#7 - Pray without ceasing.  One thing I love about the Catholic faith is memorized prayer.  My favorite is the Memorare.  It is the perfect prayer in tough situations.  I often find myself not even thinking about prayer until the doctor visit isn't going so well.  And then the Memorare is the first prayer that pops to mind.

From Rosary Rendezvous

It never fails me.  NEVER.  EVER.

What would you add to this list?  What has helped ease the "pain" of doctor appointments for your child with Down syndrome?  I'd love to hear.

Calming Clipper Review

We're in the bedroom.  Joseph is struggling to get free; I'm laying on him, holding his arms to his side.  Warren's armed with the hair cutting scissors.  Joe's screaming, I'm sweating, Warren's frustrated.  Cutting Joseph's hair is akin to bathing a cat.  Catch my drift?  It's not something you want to get involved with.  This stellar parenting moment happened about 3 years ago.  

He's calmed down a bit.  No more full contact on the bed haircuts.  In the summer we set him on the 4-wheeler and nearly grizz him bald.  One haircut = One entire summer season.  It's not easy - there's a lot of yelling and crying and flailing of arms, but we get it done.  For the rest of year, we're in the kitchen on a stool toggling between the clipper and shears, singing, dancing, promising treats, anything to get him to sit still and accept the haircut.  It's been a difficult road to say the least.  He hates the buzz of the clipper and moves so much that it's nearly impossible to use scissors without at least one nick.

Getting a haircut can be a traumatic experience for children.  And children with special needs often have sensory sensitivities making it even more traumatic.

I first saw Calming Clipper on Facebook.  They graciously offered to send me my very own set in exchange for an honest review.  I've actually had the Calming Clipper since last June and have used it many times.  I finally took the time to take pictures.

Before

Calming Clipper

Quality of Product is excellent.  The scissors are super sharp with a rounded tip and the finger grips can be removed for larger fingers.  Changing out the length guards is super simple and quick.  

These scissors are like the clippers for those off the grid - no electricity required.  Hence, they are quiet and do not vibrate.  That's what makes them calming.

I use the longest guard to remove the bulk.  Just cut, cut away.

I like to give Joe lots of praise.  This is amazing - if I were using a traditional clipper, he'd be screaming and I'd be stifling my screams.  Even so, I still take short breaks and wipe his face with a cool washcloth to remove bothersome, little hairs.

Slipping in a shorter guard, I work up the back removing more bulk, working towards my desired length.

That smile.  He actually seems to be enjoying this or maybe it's the camera.  He loves mugging for the camera.

Just being silly!

Now, I've moved to the shortest guard.  I make quick snips, checking both sides for evenness.  I'm no pro, it takes me plenty of time, but Joe's remaining calm.

See the red marks on Joe's neck?  He has such sensitive skin; the electric clipper does a real number on his skin, but the Calming Clipper is gentle, leaving only small, light red marks.

 My handsome young man - all clipped up and very calm.

Thank you Calming Clipper for providing me with a simple solution to calming our nightmare haircuts.

Note:  This was my 6th or 7th time using the Calming Clipper.  My first haircuts didn't turn out this nice; it definitely takes practice.  With each haircut my confidence increases and the time decreases.

More tips for working with your special needs child at home.

Laundry Room Speech Therapy

Two Clothing Tips for Kids with Down Syndrome

Can Pre-Schoolers Cut the Grass?

Last week I shared my low-tech way of keeping track of all the cute and educational ideas I find on Pinterest.  Notecards are my friend.

Peter is always asking to do a project.  

"Mom, can we do a puzzle project?"

"Mom, can we do an art project?"

"Mom, will you print coloring pictures so I can do a project?"

Mom, Mom, Mom......project?  project?  project?

It's his mantra.

These little notecards come in handy; one quick thumb through, and I find the perfect project for the day.

Last week we had a couple beautiful fall days - sunny, warm, low humidity, slightly breezy - just gorgeous.  So, in between walks on the marsh, Peter and Joseph did this fun grass cutting activity project.

The card read - Grab scissors, cut grass.

Simple enough and fun in its own way, it also offers some skill development for Joseph.  His hands being on the small side, they're a little weaker than the average kid's hands.  I'm always on the lookout for ways to strengthen his hands to improve his pencil grasp.  Scissor work offers plenty of opportunity for strengthening his dominant hand.

Peter gets to practice perseverance.  I told him to cut all the long grass around the big rock.   And cut he did.

This SIMPLE project freed me up for a while.  What did I do?  I swept thousands of cranberry leaves off the garage floor because those thousands of leaves were finding their way into every nook and cranny of the house.

Have a great day.  What kind of projects do you hope to accomplish today?  this weekend?

Letting Him Gain Some Independence

When I first learned Joseph would have Down syndrome I fast-forwarded 20 years imagining my grown child always by my side, always needing my help and I was scared.  I wasn't scared of the baby stage.  I wasn't scared of the child stage.  I was scared of the adult stage.  I was scared of him being dependent on me forever.  I was scared of my perceived loss of freedom.

Joe is quickly approaching eight.  He's dependent on me like any eight year old would be.  He needs me to crush his Thyroid tablet and mix it with applesauce.  He needs me to wash his clothes.  He needs me to help him with shoelaces.  

He's also quickly becoming independent in many ways.  He's figured out all the safety measures put in place to keep him from getting outside.  He makes his way out the door without so much as a "See ya" and walks to his favorite spot - the water's edge.  Last year I had to literally chase him around the yard for fear he would walk straight into the reservoir, but now this year he actually looks back waving his hand in a manner that says, "Go away, you are not needed.  I got this."  

Recently, while shopping, Joseph had to use the bathroom.  The normal routine is to use the women's restroom, but this time he walked straight for the men's restroom, turned to me and signaled for me to stop like a police officer does when directing traffic.  I reluctantly let him do his business on his own, waiting at the door in case of emergency.  And you know what?  No emergency ensued.  I could hear him talk to himself, flush, struggle with the lock, wash his hands, and then he appeared in the doorway all happy and independent.

Sometimes I find myself feeling almost sad that he's so independent.  It's hard to let go.  It's hard to let him spread his wings in this harsh world.  Independence means making decisions and living with the consequences.  Is he ready?  Am I ready?  

I suppose we'll keep adding to his list of I Can Do's slowly, just like we do with our other children.  I'll stand back, watching, waiting, and ready to swoop in for a rescue if need be.  But, rescuing isn't easy when he's always running away from me.  My early fears of him at my side 24/7 were just that -  fears.  And then as the realization of his independence sets in......

I walk into the living room to find this.  Leaf added for privacy.  We still have a long way to go.  And that's OK.

Blogging has been light to say the least.  Summer is a busy time.  Three teens working at 5 different places.  BMX racing and 4-H events are keeping us hopping.  The garden is ready for a tilling and the house needs a good makeover, especially those school room closets.  I hope to get back into a routine of regular posting, but family obligations come first.

Have a great day!

Dealing With Kids Who Do Chores Slooooowly

We have 9 people living under one roof.  We homeschool (at home of course).  We own a business and work at home.  Our kids work for us (at home).  Many of our hobbies take place at home.  We eat most of our meals at home.  Some of these things happen inside and others, outside.  The bathrooms and kitchen and garage never really get a break.  No matter what, when this many people are doing this many things at home, messes are bound to happen.  Stuff needs to be picked up and put away.  Floors need to be cleaned.  Food needs to be prepared and DISHES need to be washed.  EVERY. SINGLE. DAY.

In order to make it all work, every member of the family has to contribute what they can to the cleaning up.  We use rotating chore charts to keep everyone in the know as to who is in charge of what.  But chore charts don't make chores get done fast.  And if there's one thing that puts me over the edge it's dilly dallying while doing chores.  I know, I know when they dilly dally around it only wastes their own time.  True, sort of.  But what about when you need to use the sink for washing tomatoes or soaking cucumbers in preparation for canning and you can't get to the sink for one and a half hours.  Aargh!  It wastes my time, too.

After nearly 18 consecutive years of parenting and a combined 70 years of mothering my 7 kids I've learned a thing or two about dealing with kids who do chores sloooooowly.  First of all, I've tried all the tricks (I think).

*I've set the timer and offered a reward if they beat the time.
*I've set the timer and taken away privileges if they didn't finish in time.
*I've charged them a nickel or dime for not working diligently.
*I've sent them on time outs every time they got distracted while working.
*I've made them do extra chores thinking that they would simply work faster next time.
*I've explained the ramifications of working slowly and how it wastes their own time.
*I've explained the benefits of working diligently and the self satisfaction that comes with it.  Yeah right.
*And I've probably, maybe, sort of said that if they don't learn to work quickly and stay on task they'll probably get fired from their first job and then maybe they'll learn to just GET.  THE.  JOB.  DONE.  ALREADY.  Maybe I've said that a time or two.

Now for the tips on dealing with said kids.  The ones who work painfully slow.

#1 - Make sure they know exactly what is expected from them.  Write down the steps, draw a picture.  Do whatever you have to to ensure they know exactly what the task is.

#2 - Encourage, praise, fist bump, give a hug letting them know you believe in them and their ability to work diligently.

#3 - Walk away and let them just do the job.

Number 3 has been very effective when dealing with kids doing the lunch dishes.  Within minutes I can tell if the dishwasher is going to give me guff.  If it seems likely they will, I take the little kids outside to the trampoline or some other spot "hidden" from the kitchen window.  If I happen to go back inside and the dishes still aren't finished, I work very hard to refrain from saying anything.  I simply let them finish.  It's amazing how quickly they can get a job done when there isn't anyone to hear their complaints.

To recap, the most important thing in dealing with kids who do their chores slowly is to walk away and let them get the job done without a hovering parent or nit-picking sibling within earshot.  Sooner or later or later or later they'll learn to work quickly because it's really boring complaining to oneself and much more fun to be where the action is rather than alone doing chores.

An oldie, but a goodie post on why you should ignore your children.

Put A Stop To "I'M BORED" - Part 2

In the original Put A Stop To "I'M BORED" I shared how I dole out jobs whenever "I'm Bored" is  uttered by one of my cherubs.

Today is going to be more about preventing the phrase "I'm Bored".  There's this line in Cheaper By the Dozen where the kids are complaining that none of the other kids on the block have chores and the parents retort with:

Well, we're not like other families.

My kids always chuckle at that line because it's funny, but it also rings true.  They've definitely let me know that some of their peers don't have many chores and in fact have most things done for them.  Gasp!  That would never happen in this house.  We've expected our kids to pitch in and help out since they were able to walk.  Since Maria is our littlest, it's easy to think of examples of her helping out.  She can open the kitchen drawer and pull out a pile of forks which she will place mostly in the correct spots at the table.  She can pick up and sort toys into baskets.  She can wash down cupboard doors with a cleaning wipe or wet washcloth.  

As a parent it's so easy to want to just get it done, but it really is to your benefit to include kids in the work.  Because one day those toddlers will become teenagers.  And teenagers that can't do basic housework or home repairs can easily become an enemy, where as teenagers with skills are your allies helping the household run smoothly.

Not only does a child learn valuable skills they'll one day use in their own home, but it teaches them to use their time wisely.  Working in a diligent manner results in a job well done, quickly.  However, working slowly with lots of distractions is a waste of time and doesn't allow much time for play.

But this is supposed to be about keeping kids from uttering the words "I'm Bored" and nothing works better than real work.

Need a chicken coop door built - enlist a teen.

Need a chicken coop stained - enlist 2 teens

Need some brush cleared - enlist 2 teens and a boy

Work.  It does a body good.

So there you have it.  That's how we keep our kids from being bored.  Of course, there's still plenty of time left for fun.

Put A Stop To "I'M BORED"

This is a 2 part series on Summer Boredom

Part 1

It's August.  The kids have been on summer break for 2 months and maybe they've run out of things to do.  I know, how can that happen?  But it does.  And then the worst thing a busy mom can hear from her lounging on the couch kids is:

I'm Bored

And then what does the well meaning mom do?  I'll tell you.  She quickly lists 10 super fun ideas for her child.

Well, you could build a LEGO creation or go for a bike ride or bake cookies or go dirt biking or go for a 4-wheeler ride or call a friend or jump on the trampoline or go fishing or read a book or get out the finger paints (no, I've never said that one either).

Of course, none of those ideas are acceptable to the child and so the mom might list 10 more.

Play the electric guitar

Build a race track on the sand pile

Set up the play farm

Get out the snap circuits

Make Popsicles

Play with the dog

Ride the horses

Run through the sprinkler

Make sky-high block towers

Play a board game

Maybe the child gives one of the ideas a try, but it won't be long and they're back exclaiming:

I'm Bored Again

This is not how it goes in my house because I have an unwritten rule:  

Child says I'm Bored = Child is given a job to do

And if anything keeps kids finding their own fun it's this rule.

Making their own fun........running races

Making his own fun......playing in the gravel after a rainfall

To make this work, you as the mom (or dad) must keep a mental list of jobs to be done.  Because if you have to pause to think of a job the effectiveness rate drops dramatically.  The child will see you pausing and thinking and might catch on and run.  Some jobs on my mental list include:  water outside flower pots, fill all the milk jugs with water for the animals and flowers, brush the dog, sweep basement steps, tidy up all shoes in garage, Windex the patio door, wash down dining room chairs.  Now some jobs require more effort than others.  First time rule breakers get a quick and easy job.  Some kids learn slowly and have had to do multiple jobs in one day, each job more involved than the last.  

I've been implementing this rule for many, many years and it's worked so well in our house that I've only heard I'm Bored once or twice this summer. Only from the 11 year old.  The teens have all learned to make their own fun and have found their passions by doing so.

Reading this blog post by no means guarantees results.  Just sayin'.

Linking up with Raising Homemakers.