Life with Fragile X Syndrome

I hate milk. I have hated milk since my mom switched us from whole milk bought directly from the dairy across the street to grocery store milk. Blech. Duhdee doesn’t like it either, I’m not sure how far back his distaste for it goes but definitely since childhood.

I do recognize, however, that there are some benefits to drinking milk and we do want Monkey to drink it and, so, we lead by example. But we cheat. We use Nesquick (no high fructose corn syrup!) in strawberry (for Monkey and I) and chocolate (for Duhdee.) So that’s my confession. I bribe my child to drink milk by adding the least bad strawberry flavor I know of.

Now for the funny story. On Wednesday, Monkey was ready for dinner 15 minutes before dinner was ready for him. We explained that it was almost finished when he begged for croutons. We sternly told him he needed to WAIT when he continued to beg. Eventually, he seemed to accept what we were saying and he wandered off.

As Duhdee and I were chatting Monkey came back to the pantry and grabbed the two containers of Nesquick from the shelf and marched over to his stool. Since this is the last thing that we do before we put dinner on the table the message was pretty clear. He was ready for dinner to be under way. Duhdee and I snickered at his roundabout way of continuing his pre-dinner assault but ignored him. I even left the room.

Realizing that we weren’t yet convinced he was serious, Monkey stepped down from his stool, marched to the refrigerator and pulled out a FULL gallon of milk. Duhdee rescued the milk container before it crashed to the floor because there was no way Monkey could get it onto the counter by himself. We realized we had, yet again, been defeated by Monkey’s cuteness and persistence. I made the dang milk.

Too bad he still had to wait for dinner to finish cooking.  It really was a pretty good plan.

On Sunday the three of us took a nice long walk around Fresh Pond Reservoir, it’s one of our favorite places to go.  Monkey absolutely loves all the dogs we see on our walk.  He tries calling every single one of them over as soon as he spots them.   The constant “‘mere, ‘mere, ‘mere, ‘mere” becomes background noise to the long talks Duhdee and I have.  I never thought I’d be one of those moms, tuning out their child, but I so am.

After our walk, Duhdee had to go grocery shopping so Monkey and I hung out.  We live on the 2nd floor of a two family and we have a nice deck on the back of the house which Monkey just loves.  I decided to clean up the deck a bit because the pollen has been out of control this spring and everything had a fine layer of pollen on it.  Once the chairs were wiped down Monkey sat and watched me sweep the deck.  I realized that I really don’t sweep very often, we pretty much just vacuum or Swiffer, so Monkey found sweeping to be very interesting.  More than just interesting…he found it HILARIOUS.  He sat on the porch for 15 minutes laughing the deepest belly laughs as he watched me.  I’m glad he’s so easily (and cheaply!) amused.

Later in the afternoon Duhdee’s parents came for a visit.  They’ve been making it a point lately to come and see Monkey on his own turf where he’s most comfortable and it’s REALLY paying off.  He was quite a lot of fun during their visit.  It used to be a major coup to get him to stay in the same room with his Grammy and Grampy but now he’ll sit at the table with us and eat like it’s nothing.  He sat next to Grampy this time and after dinner he was showing off for them.  He was full of giggles and jokes, it is so cool to see him open up with them.  Now if I could just get MY family to come visit!

On Monday we had a neighborhood cookout.  It started out with our house (including Great Grampy who lives downstairs) and the next two houses but ended up including quite a lot more people.  We live in such a great neighborhood and we’re blessed to have some neighbors who’ve lived here for decades.  It was a really nice multi-generational gathering.  The youngest was 8 months old and the oldest was 80 something (honestly I’m not sure who the eldest was, I’ll have to ask Grammy…she grew up in this neighborhood and will know!)  We all had so much fun.  We started setting up around 1:30 and the last folks went home around 9/9:30.

Last year Duhdee and one of our neighbors replaced the fence between our yards and in doing so they installed a gate in the back corner so we can move from one yard to the next without having to walk around.  One of the neighbors called it a “friendship gate” which I love.  I think it says an awful lot about what a great place we live.  I hope some day someone moves in on the other side (it’s a rental so turnover is high) and stays long enough so we can put one in on that side too.

Is anyone trying L-acetylcarnitine (aka acetyl-l-carnitine; aka ALCAR)?  If so, where are you getting yours?  The study that was done in Italy used 500mg twice a day.  I am finding it in capsules and in powder form through healthstores.  Has anyone gotten a prescription for it?

Has anyone tried Neurofeedback?  Postive, negative, neutral experiences appreciated.  If you feel more comfortable e-mailing me vs. commenting, please feel free to do so. Admin @ basicallyfx.com

Thanks!

We sure had a great time here and we kept very busy, it’s going to take a couple posts to catch up!

Saturday was dedicated to finally finishing up the outdoor landscaping and planting our vegetable garden.  I had a very bad feeling about Saturday because Monkey started off in a very whiny mood.  He was constantly on the verge of tears for the first few hours for no apparent reason and of course those were the hours we had to spend running around gathering supplies for the lawn irrigation system! 

His mood finally picked up after we got home and started playing in the yard.  Duhdee moved two sprinkler heads so that they wouldn’t flood the garden since our veggies need much less watering than our lawn does.  Monkey was very helpful, he loves using tools so he kept a close eye on Duhdee’s progress.  He would grab one of Duhdee’s screwdrivers and find something to “fix” himself.

When he was tired of helping Duhdee he would help me with whatever I  happened to be working on at the time.  I repotted our strawberry plants and just generally dug around in the dirt.  We found a few worms in our flower beds and decided to relocate them to the new garden.  Monkey was very gentle with the worms.  It was just so cute to watch him cup these itty, bitty worms in his hand and carefully walk across the yard.

The last outdoor task of the day involved planting all the little seedlings we started in our basement under growlights 6 weeks ago.  We are now the proud parents of 16 tomato (4 varieties), 4 cucumber, 2 pepper, 2 basil and 2 parsely plants.  We were all pretty pleased with our efforts but none moreso than Monkey. 

Seriously, this boy of mine can not get enough dirt.  I actually caught him giving himself a dirt SHOWER prior to planting the veggies in the garden.  He would put a big handful of dirt on the top of his head and then tip his head down so the dirt would fall past his face.  Obviously, Saturday ended with a LONG bath.  He was mostly skin colored by bedtime which I’ll claim as a victory.

When he was younger Monkey really hated it when I wore my hair down.  As soon as I removed my hairclip he’d bring it to me and mime how to put my hair back up.  He would put the clip in his mouth, just the way I do, then twirl his hands in his hair and then put the clip to the back of his head.  It was quite cute and the message was clear.  If I refused to put my hair up he would make sure that he didn’t accidently touch my hair.  It was obviously a sensory issue for him. 

Recently, though, he has been encouraging me to let my hair down.  If I stand so that my hair is hanging away from my body he will walk through it and let it trail over his face and he’ll tell me “hair” and giggle.  I’m not sure what has brought on this sudden change in him. I’m just glad I can finally wear my hair down again and still get hugs!

I remember when I was little my mom used to brush my sister’s teeth and every once in a while she touch the back of her tongue with the toothbrush and make my sister gag.  She’d laugh.  It was one of those things that shouldn’t have been funny but kinda was.  Like seeing someone trip, as long as they don’t get hurt. 

I guess I’ve inherited my mother’s inappropriate sense of humor.

Last week, as we were preparing for Monkey’s birthday party, we pulled out all sorts of party supplies to see what we needed to buy.  We found a couple bags of balloons and we blew one up for Monkey to play with.  We also blew one up and, instead of tying it, we would let it fly around the room.  Monkey thought it was pretty darn funny, except when it “chased” him. 

After watching the balloon spin around the room, he ran over to pick it up.  He grabbed the now limp piece of rubber in his hand and…gagged.  He ran to Duhdee and handed it to him and the whole time he was gagging.  Duhdee blew the balloon up again and let it fly.  Once again Monkey ran over and picked up the deflated balloon…and gagged. 

I’m probably going to hell for this but I handed him the balloon two more times to watch his reaction.  I stopped when I thought he might actually puke.  Yesterday I discovered that this toy causes the same reaction. 

He just received one shaped like a puppy for his birthday.   I should totally get rid of it, right?

Monkey points to his chest and say “Meh.”

He’s really enjoying being four so far. He has enjoyed the attention this year more than ever before. We skipped the activities that we know will upset him, like singing “Happy Birthday,” and pushed him a bit on the things we thought he might enjoy, like opening gifts. We were really pleased with how well he’s done!

Yesterday was the big, family party at my parents’ house. Monkey loves going there and since it’s almost always a party when we visit he is not at all phased by the crowds; whereas here, he gets upset if there are too many people in the house. He did so fantastic!

He played with his older cousins, he tickled Auntie Kristie, he let my second cousin (who he doesn’t see often) help him up after he tripped and even let her hug him and he sat at the table with Papa (his great grandfather) and they shared cake and ice cream. He moved in and out of rooms, interacted with people who approached him and sought others out for help or fun.

One of the biggest surprises yesterday was that he opened all his gifts. He has never done this!  We thought we were doing good at Christmas when we convinced him to rip a few small strips of paper off his gifts but he did so much better yesterday. Initially, I had thought we’d just let him open things when the mood struck and we wouldn’t make it an event but we ended up giving it a shot and I’m glad we did. We gave him lots of time and everyone made sure he had plenty of space but he stayed with Duhdee and I at the center of the room and opened them all. He did the classic kid thing of tossing aside clothing but he was very excited about all the toys. It was great!

Everyone commented on how much he has changed recently and we definitely see it too. Sometimes progress is so painfully slow that we miss it but not lately! Lately he changes on an almost daily basis and we’re all having so much fun.

Monkey has a great love of balloons as most kids do, right? We always seem to have one of those party store, disposable helium tanks in our basement and we’ll occasionally run down and blow up a couple balloons for him. Sometimes, we’re too lazy. Sometimes, we’ll just blow up a balloon and call it good enough.

Usually this is fine with Monkey, he will use the balloon as a ball. He throws it around and still finds it amusing enough. This week, though, it has proven to be a bit of a disappointment for him. He just wasn’t satisfied with tossing this balloon around, so he found a way to make it fly.

Balloon, meet ceiling fan. I wish you the best of luck.

I wonder how many times it will withstand the beating before it pops. Our youngest dog is going to fuh-reak when it does. Poor Barley.