Wednesday, November 12, 2014

Could I forget my kids have Fragile X? Probably not.

I read a blog post earlier about a mother of a son with Down Syndrome who had a cashier make an ignorant comment to her about prenatal testing.  The mama set her straight about how it woudn't have mattered whether she knew in advance (in her case, she did) about her son's diagnosis or not.  She just loves her son so much that she forgets he has Down Syndrome.  I can relate to the "wouldn't have mattered" part of her line of thinking--the other part, not so much.  It was a nice blog post.  Maybe my kids are more severely affected than her son is--I don't know.  It really doesn't matter.   But it made me question myself.

Eric and I have talked before and commented that people really have no clue what our lives are like day to day.  I have told people about some of the rituals and routines we go through daily, and they are most often befuddled by them. 

I was lying in bed this morning, and I heard Drew stirring.  I thought, "I can't do it today.  I just can't deal with his shower."  How many parents think that about their fourteen year old? He never wants to take a shower.  I get that some fourteen year olds don't like taking showers.  But for the most part, you can reason with an eighth grader. For him to get in the shower, I have to go through a crazy ritual where I say, "Come on, you are so stinky!You need a show-wer!" and have to sit on the toilet and say, "Oh dear!  Scoop's pooping!  Oh Scoop!  That's disgusting!"  (Scoop is a Bob the Builder character)  Then I have to stand outside the shower to help him wash all his parts.  All the while, he is grabbing my wrists and shoving me away, saying, "No showers!  I HATE showers!"

That is one small example of a thousand different rituals we do every day.  I know I need to teach him to shower on his own.  Both boys need to learn to be independent.  I should not still have to wipe butts.  But, sometimes the thought of the process of teaching them to take a shower independently, or wiping themselves is daunting.  I get overwhelmed with all the steps in the process then forget the whole thing!

When I was lying in bed waiting for Drew to get up, I thought, "Lord, I am weary.  Heavy laden comes to mind. I know your word says, 'Come to Me all you who are heavy laden, and I will give you rest.' I thank you that you always do this.  Help me to be a good mama to my boys and help me to be patient with them." 

Do I forget my children have Fragile X Syndrome?  No, not really.  It colors every part of our lives.  But, what is more important to me than the fact that they have Fragile X is that the God of the universe knew them before I did and loves them even more.  He has a plan for our lives and is working it out for His glory. 

Monday, July 21, 2014

My baby is FOURTEEN today!

It happens every day.  Kids get older in a blink of an eye and moms are left wondering how did he get so old?!  That is what I am wondering today.  Drew is fourteen years old today.

I love the above picture.  I had no idea what I was doing with that baby in my arms, and by the way he was looking at me, he wasn't too sure, either.  

But, we must have figured it out somehow, because here is all handsome, happy and half-grown. Happy Birthday to my sweet Drewy-boy!

Wednesday, June 4, 2014

Learning something of my own

I read this cool story on Huffington Post this morning. It reminded me of something that happened on a smaller scale yesterday with Blake. He was outside while our neighbor's kids were our riding their Power Wheels  back and forth on the sidewalk. He watched them for awhile and made faces at them. I told him that if he wanted to play with them, he shouldn't make faces he should ask them to play.  

They switched to bikes, so he ran to get his bike. Blake said, "let's go, guys!" I told Ean (the oldest brother) that Blake wanted to play with him, but doesn't always say the right things to let him know.  (though "Let's go, guys" was pretty good this time!) He and his brother Holden rode bikes back and forth on the sidewalk.  They could fly! Ean told me that Blake should probably just go in the grass when he wanted to get around his lilttle brother Emerson.  I told him that was a good idea, but he's not very good at driving on grass yet.  He said, "Well, he probably just needs to practice more."  and then proceeded to demonstrate his ability to drive on grass.  And he said, "see Blake?  Do it like this!"

They played awhile longer while I talked with Heather, the boys' mama.  She mentioned that Ean said, "Mom, I'm going to go out and play with Blake," and ran out.  No big deal to him.

It was a small interaction, but it meant a lot to me.  Not to be all melodramatic, but oftentimes, I rein my kids in and tell them not to bother people, encouraging them to play by themselves, just because I fear their rejection.  I don't think I give people enough credit sometimes.

Last week, our neighbor across the street had a birthday party.  They were in the front yard and there was a Happy Birthday banner hung across the garage door.  Blake was outside and I was sitting on the front step, watching him.  He said, "Mom, is a birthday party?  Who?"  I said, "I think it's a birthday party for Norm."  Well, he loves birthday parties, so he sat watching for awhile.  He hollered a few times, "Happy Birthday!  Happy Birthday, Norm!" Norm didn't hear him and Blake kept yelling and watching.  I shushed him, because I didn't want him to seem like a weird gawker.  But I think I got it wrong.

If I am always apologizing for my kids and corralling them in, how can they experience life outside my controlled environment? Sometimes we face rejection.  That's part of life. 

The other day, a young man was walking past our house.  Blake said, "Hi boy. What you doing?"  The boy said, "I am walking to church," and Blake replied, "Oh, good job!"  The boy seemed to get a kick out of it.  He smiled and said goodbye.  Ordinarily, I'd have just smiled apologetically and said hi, or answered for them, telling Blake that they were out for a walk.  

My kids will always be different, but my sheltering them will not help them find their spot in the community.  So, in the future, if you are on a walk, and Blake happens to holler at you, asking what you're doing, I am not going to shut him up.  Just tell him what you're doing, ok? 

Monday, May 12, 2014

Ceiling fan

We haven't put our window air conditioners in yet.  The boys came home from school, and I decided I was going to put their ceiling fans on.  Blake was in his room and he saw me reaching up to turn on his fan. He said, "No! No fan!" I asked him why not,but he wouldn't say why he didn't want it on.  I said, "You don't want the ceiling fan on because it's too..." Giving him a cloze sentence format, which is easier for him to answer.  His fan squeaks and is out of balance so I expected him to say that it was too noisy. But he surprised me by answering "too windy!"  Lol. 

Sunday, April 27, 2014


We had our first practice for Sluggers Little League today.  The first couple years, Drew didn't play at all.  Then he was on Arbaclofen and he was able to play.  He's been off Arbaclofen for going on a year now, and he's doing considerably well.  So I was optimistic about today's Sluggers practice. 

We got there and parked in the correct parking lot (read: same lot as last year) and Drew said he was not getting out of the van.  Eric and Blake went ahead and I told Eric I'd be along shortly with Drew.  Drew got out and stood by the van.

 He asked where Uncle Tony was.  I told him Uncle Tony was there, and pointed out the truck I thought (incorrectly) was his.  I think Drew knew it wasn't Tony's truck.  You know that Fragile X attention to details!  Anyway, a dog on a leash came near, so that was the catalyst that got Drew hurrying toward the diamond. 

We got there and realized that Tony wasn't there after all.  Eric and Blake came over with shirts and hats.  Drew wouldn't change into his Sluggers shirt.  Apparently he was too attached to the too-small OSU shirt he picked out for himself. 

Eric and Blake went toward the diamond and Drew and I hid by the bathroom, with the pretense of waiting for Uncle Tony.

Apparently Eric was having his own troubles with Blake.  Blake had hit and kicked him several times.

Uncle Tony arrived and we went to the diamond.  Kyle, who also has Fragile X-- and a broken foot-- wasn't sure he wanted to go out and practice.  Eric got him to go out there and Uncle Tony tried to coax Drew. 
It was a valiant effort, but it was unsuccessful.  He eventually scooped Blake up and went in the outfield with Blake.  Kyle practiced his pitching and catching with the coach while Eric and Tony tried to get Blake to participate.  He did his classic avoidant behavior, by dropping to the ground and hiding his head between his knees. 

They eventually got Blake to participate some, and when no one was near us, I picked up a ball and threw it back and forth with Drew.  He usually threw it away from me on purpose, making me run for it and buying himself a little time.  He tried to catch the ball a couple times, though he didn't wear his glove. 

And he batted off the tee a couple times:

Blaker was placed in timeout for throwing rocks at me and Eric. 
He was not too impressed. 

In the end, we considered it a success.  I know that may sound weird to some.  But we got both boys in there, and they both participated to some extent.  There were no total meltdowns and no one even cried!  Including me!  We had a small reward of picking up pizza and breadsticks on the way home.