Life with Fragile X Syndrome

It isn’t that I have nothing to say.

Melissa

Sometimes I get into these periods when I just want to forget (as much as possible) about Fragile X.  I just want to be a normal (as much as possible) mom and do normal things with my normal family.  I have been deleting almost all of my FX related e-mails.  I have kept a few because the subject perked my interest but I haven’t read them.   I have been deleting almost all of my SPEDPAC e-mails too.  I am a very good ostrich when I want to be!

So many really cool things have been going on here but I got so behind on posting that I couldn’t figure out where to start and then I felt overwhelmed and paralyzed so I just didn’t.  It is too totally rational!

Anyway, during the radio silence we here at Chez Monkey have been a grand time.  We’ve been working on projects around the house in preparation for our Thanksgiving feast.  My dining room turned office/playroom turned office/playroom/dining room is back to being just a dining room! 

Thanksgiving here is done in 3 Acts.  Act 1 is Thanksgiving Day which takes place at our home with just our little family.  Act 2 is the Saturday following Thanksgiving which takes place at my parents house and included 23 people this year…and some were missing!  Act 3 is the following weekend at our house once again but this time with Duhdee’s family.  Even though we chose to do a non-traditional ham in Act 1, I am still heartily sick of turkey.  This is very unfortunate since we have approximately a metric ton of turkey left from Act 3 and it is still in the process of being turned into turkey pot pies so my house still smells like turkey.  Ugh.

Monkey had school pictures taken this year.  The last two years we’ve told them to let him participate if he wants but please don’t torture him.  The child hates having professional pictures done so badly that we’ve NEVER done it sucessfully!  This year I expected the same.  I gave them money for a package of individual portraits and money for a class picture and told his teacher to use her judgement.  The kid actually let them take his picture!  He is sort of smiling but not looking directly at the camera.  I consider it a huge win since under normal circumstances he is on the floor doing his limp noodle impression.

What else?  The talking.  OMG the talking.  We have still not told him to stop talking but only just barely.  It is still hard for other people to understand him at times but his words are getting clearer and clearer.  He has the “Umma, Umma, Mama, Mama, Mom, Mom, Mom” thing down PAT.  His inflections are much better, we can tell when he’s asking questions now vs. making statements.  He is a little repeater now.  This morning on our way to class he was goofing off and I said to him “You are a fruitcake!”  Not only did he agree with me (he also agrees that he is handsome, goofy and a smarty) but he repeated the word! 

His sleeping still sucks.  He is fine going to sleep but he wakes up in the middle of the night 3 to 4 times a week.  Sometimes he goes right back to sleep but most times he does not for long periods of time.  We have tried all of the advice given to us at the last FX clinic appointment and it’s helped marginally but not nearly enough.  Great Grampy told me this weekend that when Monkey wakes up during the night it wakes him up too.  We really need to figure something out.  We asked his teacher to make note of the days when he is really tired.  We can see the effect it’s having on him at school.  When he’s well-rested he is much more vocal and calm…when he’s not he’s a ball of frenetic energy.  His teacher thinks he’s just trying to stay awake by constantly moving.  I’m not sure what is next…we’re going to have to go for another appointment…with the changes to my health insurance we’ll have to pay this one out of totally pocket.  Bugger.

I think that’s enough for now, don’t you?  I still want to write about cutting our own Christmas tree in the near future though 🙂

Happy Halloween!

Melissa

I will not promise pictures of Monkey’s Halloween costume because I am probably not going to witness him wearing it…but his teacher reported yesterday that he wore it nearly all day at school!  This is huge!  He hasn’t worn a Halloween costume willingly since he was 2!  The other times he wore it just long enough to get a photo or two and then stripped.  He also ate enough sugar at his Halloween party to make himself sick but he had bounced back by the time I picked him up.

We’re on our way to Maine today to dig potatoes and to celebrate my mom’s birthday, it should be a long, fun day.  In the meantime, here are those photos I promised….a while ago 🙂

The Fair! And an apple picking bonus! (Did I ever even mention we went apple picking??  I’m such a slacker!)

The fair!

Melissa

An agricultural fair is just about the most exciting place ever for me.  I mean, how can you not love it?  Cows, goats, chickens, bunnies, sheep, the smell of manure, the sight of men walking around eating turkey legs!  OK, those last two I could do without.  It’s funny, I’m certainly no vegetarian (and as if I need further proof that I’m a big, fat hypocrit, our cow goes to the slaughter house tomorrow…) but it really grosses me out watching people chowing down on those greasy turkey legs.  I like my food to look a bit less like the animal I was just feeding grain to, thank you very much!  In my defense, I’ve never met our cow much less fed it grain…which would have gotten me in trouble anyway because this cow is grass fed not grain fed so … wait, where was I?

Right, the fair.  We had a lot of fun.  We saw some farm animals, ate some fried dough, bought Monkey a ridiculously overpriced toy (which he loves, so maybe it wasn’t that overpriced.)  The only part of the fair we skipped was the midway.  It’s way to overstimulating for Monkey but I don’t much like the midway either.  I like to be nice and those people really, really want my money…I feel almost compelled to just walk through and hand out money to everyone.  No need to play the games, I’ll just skip to the part where my wallet is empty.  We did walk on the very edge of the midway though, it’s hard to avoid, and one of the carnies almost made a huge mistake.  He wanted to hand Monkey darts to play one of the games.  The problem is Monkey would have just tried to play “catch”…hopefully with the operator but most likely me or Duhdee.  He has a good arm, he has hit me with balls before and it stung…trying not to imagine dodging darts.  Eep.

I’ll post some pictures tonight.  I would do it now but I forgot to download the pictures yesterday because Duhdee and I were too busy rearranging the bedrooms.   That was just a ton of fun, let me tell you.  I was worried that it might freak Monkey out, he’s not a big fan of change, but he was fine.  Barley, our Aussie mix, was not fine.  He was so freaked out that everytime I bent over or sat on the floor he was trying to crawl inside my skin…I’m not entirely sure that even that would have been close enough.  Poor, crazy mutt.  I guess we should have given him his anxiety medication before we started!  Next time.  Another 6 years seems soon enough for me!

I can’t believe we did this but…

Melissa

we’ve decided to embrace another of Monkey’s obsessions.  Duhdee signed Monkey up for his very own IM account and installed an instant messenger program on Monkey’s profile on our computers.  We’ve set it up so only people who are on his list can IM him and his only friends are Duhdee and I. 

How long before he is asking for a cell phone and wanting a texting plan?  Srsly.

A day off.

Melissa

Monkey created his own day off from school today by waking at 2 AM and staying awake until 5:30 AM when he finally crashed.  Umma was woken up again at 7 AM by a whiny little boy who had run from his room, where Duhdee was trying to wake him up to take a shower , and hopped into her bed.  He had the covers pulled up to his chin and he looked to be on the verge of tears with his eyes were squeezed shut.  Just by looking at him I knew he wasn’t going to be able to hold it together today if we made him get up so I called off the torture and let him go back to sleep.  He slept there until a little after 9.  Umma still had to get up and go to work though.  I sure hope he’s feeling better than I am right now!

Obsessions

Melissa

Monkey has gone through various little obsessions in his life.  When he was newly diagnosed it was spinning objects and we came down a little hard on that one.  We refused to let him play with toys that encouraged the behavior as if that would 1. stop him or 2. make a bit of difference to his development.  I mean really, if you just STOP him from spinning things he’ll be better, right?  It sounds pretty stupid, even to me, in hindsight 🙂

Anyway, we now embrace, and at times encourage, his obsessions.  The ones we encourage are those that he’ll share with his peers…obsessions about trains or playing ball, for example.  There are some that are just so unique (and cute) that we enable him despite the fact they won’t ever be very useful to him.  The latest of these is his obsession with receipts.  Not just any receipts though, he prefers the receipts that the library hands out each time you check out books.

On Friday, I came home from work and was greeted at the door by Monkey, “‘per (paper)?”  I told him I didn’t have any paper but that I could go and get some if he wanted, he replied “Yesssss!”  So I tromped off to the library only to find that it was closed!  I forgot that it closed at 5 on Fridays.  Dang.  I went home feeling guilty and a little apprehensive.   I didn’t know how Monkey would take it when I walked through the door empty handed.

I was, again, greeted at the door, “‘per?”  I apologized and explained that the library had closed, I didn’t have any paper.  “hoot (receipt)?” he clarified as he eyed my library bag.  “Sorry bud, no receipt.”  He wandered off and started searching through various books to see if he could find one he had somehow missed.  I was expecting a night of constant “‘per?  hoot?” but he soon moved on. 

On Saturday, he once again asked for paper.  I knew the library was open so I asked him if he wanted me to get him some paper.  “Yesss!!!”  I asked him if he wanted to go with me.  He firmly said “Noooo! Home! Dogs!” as he walked as far from the front door as he could get.  I grabbed my coat and keys, he came running to yell “Byyee!” as I left the house.   When I got home, about 20 minutes later, Monkey ran to me and shoved his arm into my book bag.  With a worry line between his eyes he searched “‘per? hoot? ‘per?”  He finally found the receipt and took off running while he hugged it to his cheek, “Awwww, hug!”

Not 5 minutes later, Monkey was in tears and asking for paper.  What???  I began searching for it but Duhdee had to break the news to me.  Monkey had FED IT TO THE DOG!  Copper, the older, gimpy one, has an obsession with paper too.  He will shred and eat any paper or piece of cardboard he can find.  Monkey will often tease poor Copper-dawg with his paper and play keep away.  He thinks that is hilarious, right up until Copper wins and eats his prize.  *Sigh*

The library was closed for the day but…Umma had been tricky.  She had checked out her books and Monkey’s books separately and had TWO receipts!  Of course she then had to spend the rest of the weekend chasing Monkey around telling him “He’ll eat it, put it away!” and telling Copper “Touch it and you go in the crate!” 

Do you think the librarian will mind if I ask her to put each book on a separate receipt from now on?  Actually, I think the better question is…do I care if she does?

Preparing for battle.

Melissa

This is sad, sad, sad but Duhdee and I are already gearing up for some more fights with the school system.  I wonder at what point we will give up and just move.   We don’t want to move.  Five generations of Duhdee’s family have lived in this house.  We like our neighbors, a lot.  We like the neighborhood, a lot.  We just may not have a choice.

The “impossible” challenges we need to resolve before the end of the school year are to convince the district to create an integrated kindergarten classroom and/or change their policy on 1-1 aides (“We don’t do them,” is a direct quote.  Our advocate finds that rather amusing.)  If we had sent Monkey to kindergarten this fall on schedule he had two options 1. mainstream classroom with minimal support or 2. substantially separate classroom, possibly with integrated “specials” (gym, art, etc.)   Neither of those would have been appropriate. 

Neither of these changes are really impossible, of course, we have a new superintendent who knows the benefits of both changes…he’s seen them work in his last district.   But there is a whole layer of bureaucracy built up in this district and while most are genuinely good and likeable people there are people in positions of power that are downright hostile.  One in particular causes a visceral reaction, the very sight of her creates so much anger in both of us…sigh.

Our son’s preschool teacher wants us to stand up and push for these changes but the last time a teacher used us as an example for needed changes it backfired big time and almost cost Monkey his placement.  If we start this fight we will have to see it through to the end.  It’s going to cost money…maybe a lot of money if we have to hire an attorney.  It’s going to cost time, guarunteed to be a lot of time (we’ve yet to write an IEP with the district with less than 12 hours of face to face meeting time.) It’s going to cause stress, which is not beneficial to anyone.

I know it’s needed.  I just hate that it has to be us.  I don’t want to have to fight over everything.  I’d just like something, for once, to be simple.

Yeah, yeah, I know…suck it up 🙂