Life with Fragile X Syndrome

Monkey’s sleep has been disrupted for the last week or so, understandable given the fact that he has not been feeling well.  He’s been waking up several times during the night and seeking me out.  I normally escort him straight back to bed, lay him down, cover him over and then return to my bed.  Sometimes this will happen multiple times in a single hour.

Since I have been sick too, and sleep deprived (stress and sickness and Monkey’s interruptions) I’ve been asking Duhdee to take a few turns.  Ever since Monkey was an itty baby, I’ve always done night wakings.  Duhdee is just not at his best in the middle of the night.  When we’ve gone through rough periods like this in the past I do them as long as I can and then will ask for help and he does help with limited grumbling (he never remembers grumbling, sometimes doesn’t remember me waking him up!)

Last night Monkey came in and woke me up around 1, he was scared (I have to assume a bad dream b/c he can’t tell me.)  In these situations I let him crawl into bed with us for a while.  I was so tired last night that I just gave up my spot, tucked Monkey in and went to take a nap on the couch, lol.  I returned to bed at 2:30 and he was sound asleep.  I took him back to his bed and then it started.  Every 15 minutes he was back in our room.  Argh!  At 4:30 I asked Duhdee to take over, I have to work today.

For the next couple of wakings Duhdee walked Monkey back to his room and tucked him in.  Then Duhdee did something that has NEVER crossed my mind.  When Monkey walked into our room Duhdee said “Go BACK to bed.” very firmly.  With wide eyes I watched my little man turn right around and go to his room.

“Aren’t you going to check on him?” I asked.

“Nope.” Duhdee replied and then he promptly fell back asleep.

I lay there for quite some time listening for Monkey, I expected him to return at any moment.  He didn’t though.  Little man had gone back to bed, covered himself over then fallen asleep.  Why, in 4 years, has it never occured to me to just TELL HIM TO GO TO BED?  I’m totally going to try this the next time!

Yet another rough night last night but this time I could have slept if Monkey had let us.  He had an upset tummy yesterday and his skin is so sensitive that he had a slight diaper rash bloom.  Last night it woke him up and he was sad and tired and in pain.  Five hours of back and forth between our room and his room.  He was miserable, I was so sad for him.  Now I’m so sleepy.  Hopefully, he’s enjoying his day off to veg with Duhdee! 

I went to bed “early” for me and then lost 2 hours to the television (honestly, I just wanted to watch the news!)  Now I’m awake again only 4.5 hours later.  Another long day of work ahead of me, bummer.

This morning I woke up thinking that I don’t know what a “typical” 4 year old is like and wondering if we’re holding Monkey back as a result.  I know that most kids at this age are more independent and are doing more for themselves but Monkey seems to be missing (for the most part) the independent streak.  He’s even a bit lazy, I would venture to say.  He comes by this honestly of course.

Last night I was sitting on the couch complaining  to my husband (via IM who was not 5 feet away from me) about being cold.  I spent more time complaining and asking him to get me socks than it would have taken me to walk the 20 feet to our bedroom to get them myself.  His solution was to turn the A/C down a bit via remote control so he wouldn’t have to listen to me complain or walk to our bedroom.  So clearly he’s gotten a double dose of the lazy gene here.  The child still asks me to carry him up and down stairs sometimes though I do say no 95% of the time, it’s a treat when I do agree to carry him.  And, this past weekend, I made him some oatmeal.  At one point, after he had eaten nearly all the oatmeal on his own with a spoon, I took the spoon to get the last little bit for him.  He sat there with his mouth open, waiting for me to give him that last bite for I don’t know how long since I was distracted and talking to Duhdee. LAZY boy!

The point is that I woke up with this thought and tossed and turned for 45 minutes before I finally gave up and came out here to ask Professor Google.  The Professor turned up lots of research abstracts (another sign that I’m not a typical parent, nearly all my search terms turn up research abstracts, lol) and finally spit out this.  It seems pretty reasonable to me, any opinions from those been there, done that moms?

There are a number of things on there that Monkey is doing, there are some slight gaps and definitely some pronounced delays but there are things on there that he isn’t doing, that he could do if we encouraged him to do so.  For instance, is there any reason Monkey can’t be putting his own clothes on?  Sure, he doesn’t have the fine motor skills for zippers or the strength for snaps but he can easily put on his own boxers, sweatpants, pajamas, shirts, etc.  So why doesn’t he?

Well, because we’ve always done it for him and it has become routine.  He doesn’t object, we don’t think about it and oops…there go his self care skills!  Since we have never had a “typical” 4 year old I think we may be holding him back in some ways.  I’ve copied the list and I will print it out as soon as doing so won’t wake the entire household.  I’ll show it to Duhdee and then we’ll start pushing Monkey to do more.  This is one of those times when I really wish we’d had another child first, someone for Monkey to learn from.  Someone for Duhdee and I to learn from!  Instead I’m stuck with Professor Google.  And you guys 😉

From Wikipedia:

Severe hot flashes can make it difficult to get a full night’s sleep (often characterized as insomnia), which in turn can affect mood, impair concentration, and cause other physical problems. When hot flashes occur at night, they are called “night sweats.” As estrogen is typically lowest at night, some women get night sweats without having any hot flashes during the daytime.

Did I mention that I’m waking up burning up during the night lately as well?  POI?  Also did I ever tell you I’m a total hypochondriac?  *Sigh*  I am due for a physical anyway.  Dr. Google is not making me feel any better.

It’s a little after 1AM and I can’t sleep, again.  I do have a cold and that is playing a part but that’s not all by a long shot.  Every time I have woken up in the last two nights my jaw has been clenched so tightly that I can barely open it.  I have to flex my jaw, while it makes loud popping noises, five or six times to just get it working properly again.  I wish I knew why this much stress again.

I think it has something to do with the fact that it is becoming more and more obvious, to even casual observers, that Monkey is delayed.  We had a fantastic outing Saturday night to Castle Island in South Boston and I really enjoyed myself.  We ate burgers and fries, we walked along the causeway, Monkey played in the water and joyously watched the airplanes.  It was just a really nice time.

When I tried to fall asleep last night, though, I kept remembering the looks from people.  It was not staring, people were friendly and smiled at me when I made eye contact but they were looking.  They were noticing.  How could they not?  He’s the size of your average 5 year old child, happy, laughing but definitely not acting anywhere near his age.  No one ever asks questions, they just look and smile.  It’s hard not to smile, his excitement is contagious but I do wish I didn’t feel this need to explain.  I just want to be a normal family.  I want to do normal things and not have people notice.  I want to be able to share information about Fragile X but it feels so forced to bring it up out of the blue.  It also feels like we’re ignoring the elephant in the room when I don’t say anything.

I am beyond hoping that I will wake up to find that Fragile X was just a bad dream.  My hope has now shifted to waking up and finding out we can cure it, that we can take it away and be a “normal” family again they way we were when he was little.  I want to go back in time and shake myself, to somehow force myself to enjoy those first 22 months more now that I know it was such a fleeting period for us.

I wonder how long it will be before I look at this time now and feel the same?

just deleted it without posting? 

I am having a very bad day emotionally today.  I was triggered by two silly situations and I vomited it all upon the screen, proofed it and agreed that all the emotions were appropriately described.  I dug deep into a lot of personal issues about my childhood, being picked on and being the sibling of a child with special needs and how that colors the way I parent. Then I tried to come to some conclusions and could not.  I even managed to offend myself with some of the thoughts I was having, which takes a special talent, I think.  

So I’ve decided to make a long story short (and to try to avoid making anyone uncomfortable with my raging mental illness) and do a bulleted list of why I having a terrible, horrible, no good, very bad day.

• I am not a talented hair stylist;
• Monkey’s only pair of sandals are trashed and he has only sneakers to wear;
• Little kids say mean things;
• Mean things stick for decades sometimes;
• Not everyone thinks different is beautiful;
• People are judgy, especially other parents; and,
• I do not handle criticism well, in fact, if feels like judgement.

Normally, I’d say something trite about needing chocolate but I’m so raw and weepy that even thinking it pissed me off at myself.  *Sigh* Now that is definitely a bad sign.

Monkey didn’t watch television, dvds, play with electronic games, etc. before his second birthday.  Duhdee and I had elected to follow the APA’s recommendations on the matter and, besides that, after we began receiving EI services there really wasn’t any TIME for such things in Monkey’s day. 

After his second birthday we gradually loosened up, he began watching The Backyardigans and then I started letting him watch Red Sox games with me (come on, how could THAT hurt him right?  They’ll only break your heart, ha!)   Gradually, the things he was allowed to watch expanded to include several PBS, Disney and Nickolodean shows (but NO SPONGEBOB!  OK, eventually even Spongebob.)  He was allowed to watch TV at times when Duhdee needed a “babysitter” while he showered or prepared dinner*.  The Red Sox (and then Patriots and Celtics) games meant that we’d watch a few minutes of TV at bedtime together too.  Do you see how far we were sliding off our first-time parent high horse here?

When Monkey was little, before the TV came into play, his favorite activity was to sit and “read” books.  He would spend long periods of time flipping through his books, looking at the pictures.  He would also bring books to Duhdee and I and ask us to read them.  What’s more, he could SIT STILL for an entire book, sometimes multiple readings of a book.  He would laugh, point at pictures we asked him to identify and use his signs to describe what we were seeing and reading.

I noticed that Monkey was no longer bringing us books to read.  He was no longer able to sit for an entire book, nevermind multiple readings of a book.  He preferred to jump on our bed and flip between his channels.  He wasn’t even watching one show all the way through…flip, flip, flip.  And then his teachers began mentioning the lack of concentration in class, his inability to sit still and pay attention. 

So a month ago Duhdee and I decided to make a few changes regarding the TV.  Our TV was accessible to Monkey all the time and though he diligently stuck to the approved channels this meant he was watching more TV than we realized.  So that remote control now lives out of Monkey’s reach.  Then I told Duhdee that I was going cold turkey on TV at bedtime too.  Duhdee was convinced this would lead to a rebellion of epic proportions and I was afraid he might be right but I was prepared to just work through it.

To our surprise, Monkey did not protest.  He still watches Curious George while Duhdee prepares dinner so he’s not totally deprived, lol.  The changes we’re seeing are huge too.  Monkey and I now read 3-4 books, sometimes more, at bedtime each night.  I let him choose half the books and I pick the other half (this way I am able to introduce new stories and not get stuck on his favorites.)  He knows that he has to sit on the bed with me, if he gets down off the bed this means he’s ready to go to bed.  It’s not a punishment, it’s just a fact.  It was hard at first and he went to bed part way through the first story more than once in the beginning but now he’ll sit with me and read until I tell him it’s time for bed (unless he is super tired and then he’ll put himself to bed, lol.)

I’m just so surprised at how far he’s come in this area in such a short time.  He will let me read unfamiliar books to him and not wander off.  He will repeat words and sounds we ask him to.  Last night he sat for an HOUR while we read books.  Considering where we started a month ago, that is HUGE.  We’re considering medication as an option for Monkey, there is some concern that he has ADHD…this makes me wonder if we are jumping the gun.  He sat down and was engaged for a full hour.  What do you think?  Does this sound like something a kid with ADHD could do?  Should we pull back and look to other options again?  I’m really torn on the medication issue…I want what is best for him and I’m not convinced that needs to involve meds already.  This is so hard!

 

*Have I ever mentioned that Duhdee cooks us dinner every night?  He rocks 🙂 

Monkey has always been very affectionate with me.  He loves to cuddle, hug, tickle, etc.  He will accept endless kisses from me to his cheeks and to the rest of his body but he can’t tolerate someone face to face with him, not even his Umma.  I tried to teach him the mechanics of kissing.  I showed him how to do a “kissy face” and he was able to imitate me but he was not able to put it into action no matter how many times I tried.  I really didn’t have a clue how to teach him how to be affectionate in this way and really, it’s not that big of a deal, he’s affectionate in so many other ways.  I taught him recently how to do “eskimo kisses.”  It’s direct face to face contact, it was a HUGE step for him…and I was happy.

Last week, as we were preparing to leave the house for vacation I knelt down and asked Monkey for a kiss.  I expected an eskimo kiss but he shocked me by giving me a very appropriate kiss right on the lips.  I was stunned.  I told Duhdee but Monkey wouldn’t repeat.  Duhdee has gotten kisses in the past but they were opened mouth-I’m going to lick your chin-kisses, lol, I thought he’d like to see this new development.

Over vacation I was sitting in the kitchen with my Mom and I told her the story and decided to try again with Monkey.  And he did it!  He kissed me just the same way and I started to tear up.  I told my mom 4 years is a LONG time to wait for a kiss and when I looked at her she was also in tears and agreed with me.

It’s such a small thing, really.  A token of affection that I never even knew I needed from him until he managed to overcome all the anxiety that it must induce in him to share it with me.  I’m so, so proud of my little boy and how he continues to fight through his challenges.