Clouds, May 2010

Clouds, May 2010

Friday, June 24, 2011

bathroom break

As in, a break from the bathroom. 

H was not feeling well this week, and by the morning of his birthday he woke up with a swollen cheek and his voice was gone, and even the presents waiting for him didn't bring his smile back. 

He is on antibiotic to help heal something in his mouth. And a pain reliever for comfort.  

How do we get the meds in him? Dan sits on a chair, pulls a screaming, thrashing, crying Hayden across his lap, forces him to recline back, grabs his wrists in a human handcuff, and I use a syringe-type-thing to squirt the liquid in his mouth. We sit him up and his red face turns on a gagging expression. 

Sometimes we have a mess to clean up. 

Although he is starting to get much better, and actually ate a small meal last night for the first time in (more than) two days, we'll have to re-visit the potty business when he's completely well. 

Pick & choose your battles wisely.  

Sunday, June 19, 2011

potty presents

He sat today. I had to physically show him the wrapped gift, and then he sat on the toilet to open it. 

He loved it and did not want to get off of the toilet after that.

He pointed to his chart and new what step he was on, without me moving the magnet over to the sunny side of the tree. And when we he was ready to get up, he said, "fluss". I said, "that's right!"

We're trying.

Tuesday, June 14, 2011

another aspect of personal hygiene

When Hayden was a toddler, we honestly had to make sure no windows were open when we trimmed his nails. 

People with FX will also have sensory processing disorder, and therefore experience tactile defensiveness (among other things). You can look that up under any search engine and get some idea of what it means. 

(Actually, go open a new tab or browser window and familiarize yourself. Then come back to this blog entry.) 

When it was time to groom Hayden, the desperate screams that would come out of this child are not noises that a human should release. Unless their life is coming to an end. Dan and I were genuinely concerned that a neighbor might misinterpret what they're hearing and call 911.

So, when we had to trim Hayden's nails because we let it go long enough-- we locked this place up as if we were preparing for a storm. (Well... in essence, we were.)

Those were the easy days. It was just screams. 

Now he is much larger. He is much stronger. And he knows it.

Imagine if you will, that you're wearing pants that are too tight. And you have to sit on the floor, with your legs crossed like a pretzel. If you're right-handed, squeeze your left fist. Now sit on your left arm, while still holding a firm fist. If you can't figure out how to sit on your arm, then slump yourself over a little bit. 

(If you're left-handed, reverse the aforementioned and squeeze your right fist.)

Do this until your muscles start cramping, and your arm tingles. 

Now, hold a piece of paper in your left hand (yes, the tired, aching one) and try to cut it with your right hand. Using only your right hand. Oh, and use dull kid scissors. Keep in mind, each cut must be crisp and straight. 

Are you managing alright? Now, have someone kick you while you're doing this. Not like they're trying to get a soccer ball down the field, but more like they're trying to push you with their feet. 

At the same time, they should periodically try and pull the piece of paper out of your left hand. Also they must constantly ask you, in a yelp, if you're done. And their voice must grow louder and more desperate. They can only say the word "done". And it sounds like "gun". "Gun? Gun? GUN? GUN??!! GUUUN??!!!!"

When you're sweating, and throbbing, and think you can't take it anymore, get a second piece of paper and start all over again. (Now you have to trim the other five.)

If you have any feeling left in your arm and hand that you were holding the piece of paper with, then you weren't giving the experiment all of your effort.

If you have no feeling left, start pacing and shake it off. 

Now imagine what the child must be going through that they maintained this much effort to try and stop you from trimming their nails.

Sunday, June 12, 2011

I hate the word ignorance but I understand how it can be bliss

I was at my parents house yesterday, and H was playing with another little boy a few years younger than him. The other little boy started doing his "flippies"-- a sort of somersault roll, but with more ooomph. He would tuck his head, and then go into a semi-handstand, and let himself fall the rest of the way over. 

Hayden began mimicking him and he leaned forward with his hands on the ground, arms locked, tush in the air, and his legs straight... almost as if he was making a tunnel. He can not kick over, but I assisted him into a tumble. 

He wanted to do it by himself, so I let him be. After a couple of tries, these little stunts were causing his shirt to rise up a bit, and his shorts to slide slightly. I caught myself looking at the waistband of his pull-up. I wished I could magically freeze the room for a quick second, and tuck his shirt in. I noticed the other little boy was wearing a training pant, too. Again, he is several years younger than Hayden. 

At one point my Dad was on the couch with Hayden and he was tickling him. The same thing started to happen as he squirmed, and his clothes got all bunched so I could see the top of the pull-up. I wanted to leap across the room and tug his shirt back down. I was hoping to catch my father's eyes for a moment so I could pull my pants up to signal to him to do the same for Hayden.  

As quickly as I catch myself thinking these things, I also begin to feel guilty about it. I should never be self-conscious of my son and I hate that sometimes my mind starts to drift towards wanting to cover ANYTHING up. 

It's the same shallow emotion that has been preventing me from sharing this blog, except with the members of a closed Fragile X Facebook group. I do not personally know the majority of the people on that private Facebook page, so I'm not self conscious. Well, that, and they're obviously empathetic to what we go through.

Thank goodness Hayden doesn't think like me. I've said this more times than I can count: as long as that smile on his face never fades, neither should mine. 

Perhaps moving forward, I should force myself to share this blog with another person every week.

After all, what good is awareneXs if I'm not raising any?

Wednesday, June 8, 2011

he knows

So now Hayden's new thing is sitting on top of the toilet lid with his pants on. 

I tell him if he wants (whatever) he needs to sit on the toilet first. "First toilet, then that." All day I try this. 

So he thinks he's smart or funny or both, which he is, but that's besides the point. 

I do appreciate that he has the cognition to be that way-- I'm thankful for it. 

However, for example, twice today when I was changing him he fought me. His four limbs and forty-something pounds are becoming a tough match for my two hands as I'm trying to clean him up. Not to mention potentially dangerous because he squirms and thrashes all over the place.

It's physically and mentally draining when things escalate to a fight of sorts. 

But I know he knows what he should be doing. When he was in the bath playing with a toy firetruck that squirts water, he watched the skinny arched stream shooting out of it, and wouldn't you know he looked up at me with a smile and said "pee".

It did look like the firetruck was peeing. 

Any time, now. Please. Lord willing. Some serious progress would be nice. 

Tuesday, June 7, 2011

need an UPP today

There was a water main break in town yesterday, and school dismissed early. Today, one of the elementary schools is closed. The older grades are going to be combined at another school, but the kindergarteners and preschoolers do not have session today. 

So H's day began out-of-routine but he handled it well. I explained that his afternoon schedule today would be the same. He seemed fine.

A little while later he wanted to watch this farm video that he has seen more times than I have looked in the mirror in my life. 

It's 7:30 in the morning, and since I don't need to bring him to school I am not in a hurry to get dressed. I really wanted to just chill for a little bit, and the thought of that damn farm video being on the screen was making my eye twitch. 

I distracted him by reminding him how proud I was that he sat on the toilet last night. I told him that makes me happy when he tries. And he smiled. He picked up a truck-- not the bus that he got last night-- but I could tell that's what he was thinking about. (The bus was still in his room because he insisted on bringing it to bed.) 

He asked me in his own way if I bought it for him, and I said yes, and then he said, "kind place?" (As in what kind of place.) And I said the store, and he said, "nice place?" And I said sure. And he said, "me work?" I said yes, maybe you can work there one day. And then he said, "my buddies. play golf." 

Dan has been playing golf regularly, and one time he said he was going with his work buddies. Typical of a child with FXS, Hayden likes to bring up familiar subjects. Repeatedly. I am not complaining...the fact that his expressive language is finally emerging has changed all of our lives for the better. 

But our little conversation made me think about what kind of opportunities he will have when he's older. And whether or not he'll have work buddies, and if they'll ask him to play golf. 

I'll snap out of it. It's just these little subtle things that get to me sometimes.

Monday, June 6, 2011

back to the toileting board

thank goodness! 

Finally got H to sit again tonight. For days I have been telling him I have prizes and presents, and finally I said "toys" so he wouldn't think it was just more doughnuts. 

I could tell he was happy and he repeatedly asked me, "see it?" I said, "sure- just sit on the toilet first. Then I will give you a new toy."

At bed time he was finally ready to humor us again. And I gave him his first toy reward-- a double decker bus from the Cars 2 movie. He was very excited and while sitting on the toilet he pushed it up the wall, and then drove it across his lap, and was all smiles.

I hope this was enough of an incentive to keep moving in the right direction. As we were putting him to bed, I reminded him there are more. He said, "me 'cited!" I said, "you should be excited! Next time try to put pee in the toilet and you'll be even happier." 

This just might work. And if we take a few steps back again, at least now I know he can rebound. 

Sunday, June 5, 2011

anything worthwhile is rarely easy

the toilet training is not going so well in recent days.

there are tears involved.

I know these kids are expected to succeed at this. I know he will. Hayden does everything when he's ready and not before. There is already a long list of accomplishments that I was originally so discouraged about him mastering, and he never ceases to prove me wrong.

We went to an FX conference in Brooklyn this past weekend. One of the presenters said that they worked with a man who did not speak. When he was 32 years old he began using expressive language.

You can't put a time frame on anything.

At six months old we wondered why H wasn't sitting up, but 2 months later he was ready. At a year we wondered when or if he would crawl. But 3 months later he was ready. At eighteen months we hoped he would walk soon. And a month later he was ready.

One winter evening in February of 2007 we stood him up against the couch, and he nearly walked clear across the living room. Frankenstein's monster style. It was awesome.

He was delayed transitioning from a bottle to a cup, but he did it! He was delayed drinking with a straw, but he did it!

Delayed in most aspects. Yet constantly progressing.

The day he sits on that toilet and goes, this child is going to be so unbelievably praised I almost wonder if we'll be able to get him out of the bathroom.

Wednesday, June 1, 2011

on a side note...

If Fragile X Syndrome was part of routine pregnancy screening and I knew ahead of time that my unborn baby tested positive, at the very least it would have been a mental preparation for us. In addition to that, it would have been an opportunity to have Early Intervention services beginning at infancy. Also, this would have allowed us a chance to educate ourselves, on how to meet our child's special needs. 

(Early Intervention services are provided by the state for infants and toddlers up to three years of age, who need one or more various therapies. There are many different therapy areas that a child may qualify for-- following evaluations. Some examples include physical therapy, speech, or occupational therapy which is more sensory and fine-motor focused.)

The early knowledge of FXS, as I was saying during pregnancy for example, would also have been crucial for the rest of the family to know. Therefore they too could get tested. After all, FXS is a genetic condition and there will likely be other carriers.

However, taking a step back for a moment, if I knew about this prior to getting pregnant I would not have chosen to take our chances. A woman (one who has, or carries the FX gene) has a 50% chance of passing Fragile X Syndrome to her child. It's a roll of the dice I would not have wanted to gamble on. Therefore, we would have involved reproductive specialists who could test my eggs prior to them being fertilized. (To be blunt...)

I respect the decision of other parents who just want more kids and don't believe in having the assistance of modern medicine to avoid the gene being passed. 

That being said, I disagree with them with every single fiber of my being. 

The love, respect, and admiration that I have for Hayden is indescribable. He is my heart, my spirit, and my soul. And YES I believe in him. I am PROUD of him. But of course I wish he was not mentally impaired.

There is a reason there are doctors and scientists devoting their careers and their lives to finding treatments, and ultimately, a cure. I believe it's wrong to knowingly risk passing on a genetic disorder that will compromise anyone's life. 

This is my belief.