Thursday, May 3, 2012

A Fragile X Post

This is a blog post from a friend who has three kids with Fragile X Syndrome.  One boy and two girls.  This is what happens sometimes to our kiddos.  Not a fun experience.

I know this title has nothing to do with my surgery.

But, in a way, it does.

Read on.

We have received so much help while I have been down post-op. We've had meals brought in, caregivers for the kids and family to care for me.

We are so grateful.

But, we also tend to feel a bit guilty and try to do what we can on our own, so when we realized that Baby still needed her prescription filled for her sinus infection we thought that I would be able to handle Baby and Brother at home while Marc took Sister with him to Harmon's to get the medicine. Harmon's is a grocery store with a Pharmacy inside and Sister LOVES to go to the store.

While I was here at home helplessly listening to Baby attack Brother downstairs I kept trying to muster up the strength to walk down stairs and see if I could bribe Baby away from Brother because I knew I would be able to do the usual "heave, ho" of lifting her up and off and away from the temptation of pulling his hair and biting his shoulders. But, I didn't have enough strength or will power so I just listened to him whine hoping he would finally get his whits about him, stand up, pick her up and bring her upstairs.

Thankfully, he did.

He came upstairs with Baby in his arms, face reddened and a look of exasperation... and pride. He was very proud of himself for handling the situation on his own. I was very proud of him too.

I told him to bring Baby over on the other side of the bed with me and maybe I could get her to watch a movie with me or something.

Brother went back downstairs and I was getting a movie ready on my laptop to entertain Baby.

But, Baby hasn't been able to have access to "attack" me for at least 3 days and just couldn't resist any longer. She went for my face first and I was able to hold her off a little while I was trying to get the laptop off my lap so I could get in a better position to hold her off and then she noticed my weakness and started going at me full force, teeth bared and legs flailing.

I could feel my stomach muscles straining trying to to keep her from hurting me but I can't sit up like usual and have to roll to my side to get up so, of course, she held on tight as I rolled to my side and then because of her extra weight I couldn't get up. I started to panic because of the pain and I didn't want to ruin any of the work that had been done so I reached for my phone and tried to speed dial my neighbor and there was no answer.

And you have got to remember that I have a "piranha" child on me this whole time.

I finally get her off of me, don't even remember how, I think I did some sort of dive-roll off the bed thing and then decided that laying down while I was alone with her was not a good idea. So I sat at the kitchen table while she ate some cookies and I waited for Marc to get home to relieve me from the experience of being home alone with Baby... (Really how do you not laugh when you reflect on how crazy Our Life can be at times? Like "home alone with Baby" should ever cause any worry... tee hee!)

I see the red car pulling up to the garage and a wave of relief flows over me.

Then, I here the blood-curdling screaming come from the garage up the back stairs.

Sister comes in red-faced and crazed screaming that her umbrella is broken.


(Side note: Sister loves going shopping with us, but sometimes we forget that that means she loves shopping because she thinks it always means she gets to buy something.)

Marc comes in looking a bit frazzled yet calm.

He was trying to explain to me what had happened but, Sister's incessant screaming didn't allow for a friendly adult conversation so we just moved on to the process of calming Sister down which entailed swinging in the hammock, rubbing her face and rocking and reading.

Marc was finally able to tell me about his experience with Sister at Harmon's.

He went straight to the Pharmacy and gave them the prescription and was told it would be 15 minutes. So he and Sister wandered about the store just "shopping" around (because that is what Sister loves to do) and Sister found an umbrella that she liked. Marc made sure to inform her that they would not be buying it, but they could still look around and spend time together while they waited.

Finally the prescription was ready and they went to pick it up and then leave.

Sister would not leave without an umbrella.

Marc said they could go pick out a treat instead.

They walked to the other side of the store to get the candy all the while Sister is holding onto to "her" umbrella desperately yelling that she wants the it. By this time they have drawn a lot of attention at the store. On-lookers wondering what is going on.

Marc tells her that she needs to put the umbrella away and she can choose to have or not have a treat instead. She is still yelling and screaming and stomping and flailing. He sees that there is no talking any sense into her so he calmly takes the umbrella away from her and picks her up and proceeds across the store to the exit.

All this time she is hitting him, kicking him and then she grabs the sunglasses off his head and throws them to the ground. He calmly picks them up and puts them back on all while holding her during her fit.

Then she grabs his sunglasses again, but this time, twists them in from of his face until they break and then throws them on the floor.

Marc again, while holding her, bends over and picks them up and throws the pieces in the garbage on the way out the door.

She is still screaming once they get out to the parking lot and trying to run back into the store to get her umbrella while he is trying to unlock the car.

She won't cooperate getting in the car so he realizes this looks pretty strange as he is trying to shove her into the car and it wasn't helping her calm down so he takes her in his arms, sits in the front seat and rocks her till she calms down.

As he is rocking her two store employees approach him and tell him how impressed they were with how calm he stayed during the whole ordeal and also expressed to him that there were some patrons who were asking the employees to call the police because of the disturbance. So, I guess the employees came out just to double check to make sure that Marc was not a kidnapper or abusive. I am still impressed with how calm Marc is about the situations with the kids. It is not easy.

I am sure people at the store did not know what to think of the situation he was having with Sister. I am positive that it just came across that she was throwing a tantrum about not getting an umbrella that she wanted. They have no idea, in general, that she is perseverative and does not understand, fully, the world around her.

I am sure that most people who witnessed the occurrence will just rehearse it to others as a severe tantrum and not as a overstimulated, hyper-aroused and out-of-routine-while-her-mother-is-re-cooperating-from-surgery individual with Fragile X Syndrome. That's why I wish, so badly, that we could raise more awareness about Fragile X Syndrome and the affects it has on different people.

So, both Marc and I had a our fair share of frustration last night and we both came to realize that we do need the help while I am healing. I just hope that I heal a lot faster than I seem to be.

I will post soon more positive experiences (because there have been many), I just wanted to write this one down before I forgot and I can finally look at the computer screen without seeing double (smile).

1 comment:

  1. This was eye opening. Thank you for sharing. Praying for you daily, and those two wonderful little boys of yours!