Special Needs

I was only his 4th Mommy

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For four months I tried to teach him numbers and colors.  Not much success.  But he knew how to use my hammer, drill, and screwdriver.  The most enthusiastic battery-changer I ever met.

We worked on cutting, coloring, and writing.  His age indicated he should start kindergarten this summer.  But he was so far behind in life; that seemed impossible.  His sister, two years younger, passed him up easily.

I taught him how to use the toilet.  He was very proud of that and his big boy undies.  One thing he could teach and model for his little sisters.

When he came, he didn’t know how to jump.  I think that one hits me the hardest.  When he left we were still working on alternating feet going up the stairs.  Repeatedly I corrected his infantile speech patterns all day long.  Improvement came at the speed of molasses.

He was the best, most cheerful helper a Mom could wish.  Dish washing, laundry chores, floor cleaning, table wiping.  Happy just to be near, feeling secure in my presence.  Such a sweetheart. Yet, sometimes, and for some activities, a Mom requires a door closed between herself and a constant shadow.

His favorite thing in the world was to be outside. And if that wasn’t possible, to be fixing something.  Whatever direction his life takes he will surely grow into a very handy man.

When anxiety over took him, for every reason or no reason, he was different.  Withdrawn, unable to interact or participate. Filled with some feeling that could only be relieved by vomiting.  Although his anxiety surrounding attachment, separation, and correction improved as he learned to trust us, anxiety about eating and drinking worsened and consumed him.

Every day was a race to put more calories in him, or his feeding tube, than he threw up.  One unending trauma over the need to take in sustenance.  Neither he, nor we, could maintain that.  His medical needs were greater than our family could meet.

And so he left. To meet his fifth Mommy.  Who has decades of experience with children who have feeding tubes and trachs and wheelchairs.

He still couldn’t color or count or talk right.  But, he could sing Jesus Loves Me.  And he used words instead of hitting or kicking or biting when he didn’t like something.  He had learned how to follow directions and say “Sorry”.  He could accept a consequence without screaming his head off.  He learned that the parents take care of the kids and people go to work to make money.  He could tell you our job was to keep him safe and his job was to stay with us.

He grew so much in things that matter more than kindergarten readiness.  Hopefully things that will make a difference for him the rest of his life, wherever else he goes.

“..when you are done with therapy..”

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Today I glanced into the future, felt sadness pulling, formed a reply and quickly ducked back out, leaving unknowns to simmer until they rise again into the here and now.  Life is busy rolling daily by. Four kids, two dogs who escape when the roofers don’t latch the gate, new gymnastics skills to practice on the bed and over the couch, cleaning and laundry and errands…  And this morning it all stopped for an instant, for a comment meant to be helpful, from a sister to a brother.

A little brother who mentioned learning to crochet – like one older sister knows how and the other plans to learn.  A little boy who hopes to be included in any activity and doesn’t yet recognize that sometimes that may be more difficult for him than for others.  The encouraging sister replied, “Maybe when you’re older bud, or at least when you are done with therapy so your hands don’t shake anymore.” And my heart sank.  The future, that unknown, had sifted through, if ever so briefly.  I needed a reply, truthful, yet filled with hope rather than discouragement, but not hiding behind what might not be.

I struggled as so many different thoughts crammed in, grasped for words as that sweet face processed what he had just been thrown.  And the older one moved on, not realizing the potential anguish she had just glanced upon.  Because “done with therapy” and “hands don’t shake anymore” may never come to pass.  Because that is the one bothersome detail that they don’t really work on at therapy.  Because they can’t, really.  They can try to help accommodate by teaching strategies to accomplish a certain fine motor task or offering the use of wrist weights to help steady hands for a short time.  They can work on balance and pincer grasp and keeping your tongue behind your teeth when speaking (Always behind the teeth – except for ‘th’!).  But, resolving shaky hands is not one of his goals.  I hadn’t realized that his sisters (and maybe he?) expected that would improve.

Just as I didn’t know they were expecting a point in time when therapy is “done”.  That day may yet come. Or maybe not.  Therapy is just something we do. Like other families do volleyball or Boy Scouts. When it all began, just before he turned 1 year old, all the professionals spoke as though he only needed a little extra help meeting mile stones and would be caught up in six months.  Then another six months.  After a couple years I noted with a falling heart when the wording changed before therapy breaks from “if he needs to come back” to “when he comes back…”.  That night I cried as my husband tried to understand why I was upset. (He’s the same as he was yesterday. You are crying because somebody used different words?)  Now we have been at the “new” therapy place over a year. The longest we have gone without taking a break.  No matter how I ask, the therapists won’t give their expectation or guess on his progress and length of time for treatment.  I recognize they can’t. They don’t know.  None of us know.

And for the most part it doesn’t matter.  He likes going to therapy. I like his therapists.  Two and a half hours a week is not a big deal.  It hasn’t always been a smooth ride, but he has made some great progress because of therapy.  I am thankful for the place he now attends (along with two of his sisters).  When will we be done is not something that rises to the top often as we roll through each day.  Many people would meet him and not even recognize that he has any special needs.  I am thankful his issues are mild while knowing many parents whose kids attend his therapy center can’t say the same.

But, today I looked up from ‘now’ and glanced ahead.  I saw that each year he grows older he may more often encounter times when someone discourages him from doing or trying something that might be extra challenging for him.  There will be more times when he might feel different or left out or frustrated.  I saw that as his parents we will have to purpose to encourage him to do anything he wants to try (that is appropriate for his age), even if it might be tricky or slow or hard for us to watch those shaky hands that knock down the pieces when they mean to set them up.  And I felt sadness pushing in.

I know God holds me, and he holds my son. He holds my sadness.  He alone knows what that future looks like.  And He created my child. He created him perfectly, and He gave him to us.  I can rest in that. So I glanced back away from the future and back into the four pairs of eyes surrounding me at the table.  And I took a breath and said, “Well that’s not really something they can work on at therapy. But when you are older you can learn to crochet if you want to.”  And the dogs needed to go out. And children needed to finish eating and get ready for church. And life rolled on.

Psalm 139: 13-14

For you created my inmost being;
    you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.