Life with Fragile X Syndrome

Duhdee has this thing…he’ll say “What?” after I speak to him.  Most times I will repeat myself but other times I will just stand and look at him until he is able to repeat what I’d just said to him.  I think our house has some magical echo that only Duhdee can hear, lol.

I was amused to see that Duhdee’s on-line “hearing” is just as sketchy.

[11:04] Umma: i think we need cinnamon
[11:05] Duhdee: say what?
[11:08] Umma: i think we need cinnamon
[11:08] Duhdee: oh
[11:08] Duhdee: gotcha
[11:08] Duhdee: lol

We don’t, btw, need cinnamon.  He already bought more. A good reminder of why I keep him around.

I have no excuse.  I am just mentally exhausted for no apparent reason.  Yes, work was stressful the last two weeks but I normally bounce back pretty quickly.  Poor Duhdee keeps asking me what is wrong and telling me I seem “off.” I can’t put my finger on anything though.  I’m just tired and while I’m not unhappy I’m also not happy.  Very odd, even for me.

The commute tonight was not fun.  It snowed this morning, then it turned to sleet and finally it turned to a cold driving rain.  The sidewalks in the neighborhood were a disaster, ankle deep water and slush were everywhere.  I had to walk in the street and even that wasn’t entirely clear.  Oh, and, this morning…I forgot my umbrella.  So.  I was not a very happy camper when I arrived home.

Then I opened the front door.  I knew the moment that my son realized that I was home because he began yelling excitedly.  I peeked in the doorway and as I stripped off my dripping coat and damp boots he bounced and waved to me.  As soon as I stepped into the living room, I opened my arms and he said “Ummy!” and ran to hug me.

I love coming home.

I present for you Monkey’s second favorite activity.

Cleaning.

I am a lucky, lucky Umma.

Sometimes I worry that people will think that we are overly permissive with Monkey because of his disability ((I need to write a post about this sometime b/c I’m uncomfortable with this word.)).  We run a very child-centered household for sure and we do it because we are trying to foster a sense of power in Monkey.

It seems to me that it would be very easy to feel powerless if I were in Monkey’s position.  If I were unable to clearly communicate my thoughts and desires in many situtuations, what are the chances that even well-meaning people would discount them?  How many times do you suppose that he tries to communicate something and has it misinterpreted?  I know for sure that it has happened at school and it happens at home too.  There are times when, no matter how well we know him, we cannot understand what he wants.  We’ve given up, at times, out of frustration because we can’t figure out what he’s trying to tell us or ask of us.  Those situations, few and far between as they are, break my heart.

Also, Monkey is asked to do things frequently that make him uncomfortable.  His comfort zone is so very small that this is unavoidable.  In the name of therapy he is asked to touch things he does not want to touch, he is asked to get into physical postitions that he does not want to get into, he is asked to jump through hoops he does not want to jump through just to get what he does want.  I understand the importance of all of these things and I understand that it’s for his ultimate benefit but I do wonder at times what this does to his sense of worth.  No one forces him to do anything but we do exert a great deal of (well-meant) pressure to induce him to comply. 

So home is the place where we feel we can best empower him.  Sometimes it leads us to do things we do not want to do.  For instance, Monkey will grab a stick of shortening and point at the mixer to indicate he wants to cook something.  It’s now up to me, even when it’s the last thing I want do, to figure out what we can cook with shortening and a mixer (the answer is Snickerdoodles, btw.)  Saturday evening he decided he wanted to use the food processor.  We don’t often use the food processor so it took a little while to figure out what we could use it for (homemade hot chocolate)  and we did so even though it was dinner time and we should have been cooking dinner instead.  It seems like such a small thing, to stop whatever plans we were making to do what he requests but I hope it pays off in the long run.

I want him to grow up and know that what he wants counts.  That what he likes is important.  That what gives him joy is worth pursuing.

Even if it means we need to order out for food if we want to eat dinner anytime soon.

I woke up to find our refrigerator handle looking like this:

Hmmm, I didn’t recall it looking like that when I went to bed.  This isn’t looking good for that pumpkin pie Duhdee had baked, is it?

Well, it’s still covered but are those Monkey fingerprints in it?

Why, yes they are!  He did say “Yumm” so I know he enjoyed it at least.

I am useless in the kitchen.  I bake, I boil and I can cook grilled cheese sandwiches but that’s it.  It’s pitiful, I know, but I don’t feel any need to change that because Duhdee loves to cook and he’s really, really good at it.  As if he needed any more characteristics to prove, beyond a shadow of a doubt, that he is Duhdee’s “MiniMe,” the boy has a burning desire to cook as well.  Oh, the ways I suffer.

The sound of a cabinet door being closed or utensils being gathered causes Monkey to drop whatever he may be doing and run straight for the kitchen.  He loves to add pinches of this and that to Duhdee’s recipes.  He has to be supervised very closely because he will add things that should not, under any circumstances, be added.  For instance, garlic croutons to Duhdee’s coffee?  Duhdee was really confused as to why he coffee tasted so terrible until he cleaned out the pot, ha.   Extra, extra, extra salt?  Sure thing!

Sometimes, though, Monkey is not allowed to help.  The rule in the house is that if something is on the stove he is not allowed to help.  Monkey hates this rule and has sat in time-out on more than one occasion due to his non-violent, but persistent, protests.  Duhdee recently made a delicious pot of beef stew ((haha, I typed BEET stew initially, ew)) and, since this meal revolves entirely around a stock pot on the stove, Monkey was forbidden to help.  What is a poor Monkey to do?  He’d already sat in time-out for violating the rule so he decided to improvise.

He stole some of Duhdee’s onion and “cooked” on the kitchen table.  Heh.

Now here’s a question for you, how do you decide if a child is safe enough to assist with cooking on the stove?  Since age is clearly not going to help me here, what would you look for in terms of readiness?

Monkey has lately been showing interest in assembling his train tracks all by himself.  This morning he built what I told Duhdee was obviously a pork barrel project.  We shall call it the “Track to Nowhere.”  It was a 6 piece section of straight track that he moved around the house wherever he wanted to go.  Pretty clever, actually.

He was very proud of it and when I asked him to show me his track he gladly did so.  It required a little bit of repair but he can always use the extra fine motor practice.