I checked my e-mail today and found an e-mail from YouTube Support thanking me for reporting a server error. At first I thought it was spam but then I looked a bit closer and saw that someone HAD sent YouTube a report, from my YouTube account, stating “kk ll.”
First of all, there is only one YouTube user in this house and, secondly, there’s only one person in this house who types like that. I can’t believe Monkey’s sent in his first support ticket and he’s not even 4.
We’re back to crappy sleep here but there is a reason. Monkey and I are sick, oh the joy!
We’ve managed to come down with some sort of virus that includes a racking cough, fever and a general feeling of yuckiness. We’re both tired but we can’t sleep well because we’re so uncomfortable. Work is so very busy right now that I can not stay home. Even worse, I need to work late most nights. Monkey has stayed home from school with Duhdee all week but it doesn’t seem to be helping. His temp is below 100 but he is very whiny, very tired and not sleeping. Poor Duhdee, it’s a wonder he hasn’t taken to drink!
I refuse to end this on another sour note, it runs contrary to my need to find the silver lining. Hmmm…well isn’t this a pickle? I can’t think of anything new or fun to share!
I guess I’ll just settle for a sweet moment Monkey and I have begun sharing in our time of sickness. Monkey has noticed that, although we are really strict about making him sleep in his own bed most of the time, we relax our standards when he’s not feeling well. As if to further sweeten the deal, however, he has taken to pausing as he crawls over me to find an open spot in the bed just long enough to give me a nice cheek to cheek hug. It takes me long enough to recover from my moment of “Awww” for him to plant himself securely between us and pull the covers up to his chin. Only a monster could remove him from the bed at that point 😉
That’s all I’ve got. I’m a sucker for a sick Monkey 🙂
I’ve hit a rough patch here. We had another appointment at the Fragile X clinic and they always throw me off no matter how nice the folks there are. Having to outline, in great detail, all the ways Monkey isn’t “normal” really gets to me. It makes all of the Fragile X stuff seem so much bigger than it is in our every day lives.
I always end up spending too many hours after the fact dwelling on all the questions the Dr. asked and my answers. I second guess my answers, did I overstate or understate the positives and negatives? THEN I start to second guess whether we’re doing all we should for him. Should we have him enrolled in more therapies, more activities? What therapies? Should we be doing more vitamins or supplements? What vitamins? What supplements? Have we totally screwed up by letting him watch TV? We never used to allow it. Is that why he can no longer pay attention to an entire story?
Uh, well…I think you get the idea. All my insecurities and fears get really big and try to drown out the really good stuff, like the fact that Monkey spent a very pleasant evening with us and his paternal grandparents last night. He will normally not stay in the same room with them but he did so last night with a smile. I’m trying really hard to focus on that right now.
POSITION :
Mom, Mommy, Mama, Ma
Dad, Daddy, Dada, Pa, Pop
JOB DESCRIPTION :
Long term, team players needed, for challenging permanent work in an often chaotic environment. Candidates must possess excellent communication and organizational skills and be willing to work variable hours, which will include evenings and weekends and frequent 24 hour shifts on call. Some overnight travel required, including trips to primitive camping sites on rainy weekends and endless sports tournaments in far away cities!
Travel expenses not reimbursed. Extensive courier duties also required.
RESPONSIBILITIES :
POSSIBILITY FOR ADVANCEMENT & PROMOTION :
None. Your job is to remain in the same position for years, without complaining, constantly retraining and updating your skills, so that those in your charge can ultimately surpass you
PREVIOUS EXPERIENCE :
None required, unfortunately.
On-the-job training offered on a continually exhausting basis.
WAGES AND COMPENSATION :
Get this, you pay them! Offering frequent raises and bonuses. A balloon payment is due when they turn 18 because of the assumption that college will help them become financially independent. When you die, you give them whatever is left.
The oddest thing about this reverse-salary scheme is that you actually enjoy it and wish you could only do more !
BENEFITS :
While no health or dental insurance, no pension, no tuition reimbursement, no paid holidays and no stock options are offered; this job supplies limitless opportunities for personal growth and free hugs and kisses for life if you play your cards right.
We’ve seen some really nice improvements with Monkey lately. He’s becoming really vocal and attempting more and more to repeat words when asked. He has also spontaneously used a couple of new words this week (water and Tigger.) Typically, we will see the improvements weeks before the teacher and the assistants do but they’re hearing all the same words and sounds from him at school. It’s nice that he’s comfortable enough to “show off” for them.
Another area of improvement is sleeping. Out of the last 9 nights he has slept straight through for 6 or 7 of them. He slept straight through 6 nights in a ROW at one point. Bliss! He’s still sleeping on the floor and we have eliminated the melatonin. He’s getting about 10 hours of sleep each night now which is just so nice. I’d love more but, after the awful stretches we’ve had, I’ll take what I can get!
I think we may have also turned a corner on the school drop offs but it’s a little soon to know for sure. I thought that Friday might have been a fluke but he has done really well this week too.
Monday morning we used a combination of tickles and M&Ms as rewards and he walked to within 6 feet of the classroom door fairly happily. Once Duhdee removed his coat, Monkey skipped the water play and took Duhdee straight to the swing room where all the other kids were. Once in the swing room he let go of Duhdee’s hand and ran and jumped into one of the large puffy cushions and promptly forgot all about us. He was still rolling around on the cushion when we left.
Tuesday we repeated the tickles and M&Ms system and he reached the same location outside the classroom door before he refused to walk further. He was a bit whiney as Duhdee was removing his coat but nothing too awful. Duhdee set him up at the sink to do his morning water play and walked away. The assistant who was going to take over was still engaged in another activity so we stayed to keep an eye on him but from a distance and he never looked for us. Once she was clear to join him we left and he was still happily filling and emptying his cups and toys.
So, I suppose, if McWhinerpants comes along with all these really cool improvements, maybe he can stay a little while longer.
Very interesting!
Effective ADHD Treatment Found for Children with Fragile X Syndrome
ScienceDaily (Feb. 21, 2008) — Fragile X syndrome (FXS) is the most common hereditary form of mental retardation. Many children with FXS also suffer from attention deficit and/or hyperactivity disorder (ADHD), which complicates social relationships at home and at school. Although stimulant medication such as Ritalin® is often successfully used to treat children with ADHD, studies have shown that while it is effective in children with mental retardation, it also causes side effects such as increased irritability, decreased verbalization and social withdrawal.
A previous study showed that L-acetyl carnitine (LAC), a form of the amino acid carnitine, significantly reduced hyperactive behavior in FXS boys with ADHD who were treated with it for one year without causing adverse side effects. The same authors have now conducted a randomized, double-blind, placebo-controlled multicenter study to determine the effectiveness of LAC in a larger group.
Led by M. Giulia Torrioli and Giovanni Neri of the Università Cattolica in Rome, the study involved 51 boys between 6 and 12 years old with FXS and ADHD who were treated in one of eight centers in Italy, France and Spain. Each patient followed the treatment for 12 months, which involved 500 milligrams of LAC or a placebo given twice daily. Patients were evaluated by an interdisciplinary team of child neuropsychiatrists and psychologists at the start of the study, after one month, six months and 12 months. The effects of the drug and placebo were evaluated using a set of neuropsychological tests to assess behavior.
Those treated with LAC demonstrated reduced hyperactive behavior and increased attention. No side effects were exhibited, confirming that LAC is a safe alternative to stimulants. The patients treated with the placebo also showed reduced hyperactive behavior, although not nearly to the extent as the LAC-treated patients. The patients treated with LAC also had significantly improved social ability compared to the placebo-treated group. Both groups took intelligence tests, but LAC did not improve overall intellectual functioning.
“We propose that LAC be recommended as a treatment of ADHD in FXS children,” conclude the authors, “since it effectively reduces hyperactive behavior and improves social abilities without adverse side effects.” They also suggest that these results may be applicable to children with autism, who also do not easily tolerate stimulants.
I want my Monkey back! Is the incessant whining thing a delayed 3 or is it 4 knocking on the door?
Monkey has never been a whiny kid but for the last few weeks he’s been sitting down on the floor and whining a lot and over nothing. The worst (or best, I can’t decide) part is that when he does the whining it is accompanied by the most serious puppy-dog eyes I’ve ever seen, lol. I laughed outright the first couple of times because it was so stinking cute but now I stiffle it. I don’t want to scar him (or encourage him :))
So is 4 the whiny age or is 3 finally catching up to us?
Duhdee is snowmobiling in Maine this weekend. Monkey and I dropped him off at the train station last night which means Umma got to do the morning drop-off solo. To quote Great Grampy, “Ohhh, boy!”
Our morning drop-offs have been improving, it is true, but they’re still not what anyone would call fun. It takes BOTH of us to get him in the door, down the ramp and to his classroom. I walk ahead with bribes (M&Ms) and coax him to walk to me. Duhdee walks with him and peels him off the floor whenever Monkey does his “Look Ma, no bones!” trick.
Once we are within 6 feet of the classroom door, Duhdee has to drag/carry him into the room. He used to carry him ALL the way into the school but then Monkey started hitting Duhdee in the face trying to get put down (it was a brilliant delay tactic but we saw through it) so now he has to use his OWN feet and walk like a big boy.
You can imagine how excited I was about this morning. How was I going to both walk ahead to coax him *AND* keep him on his feet? I improvised. I would aim him in the right direction and only get a few steps in front. I promised M’s at all the normal spots. It worked pretty well too! He only flopped to the ground 3 times and the last time was when we were right outside the door like every morning. So not too bad.
Once we were in the classroom one of his lovelies came to see him. He sat on the floor and let me take his coat off with minimal fuss. THEN instead of going to the sink for his morning bubble play he signed “Baby Fish” and pointed. He wanted to show me the fish tank! After we took a peek he went to the reading nook to visit with the HUGE stuffed bear and his friend joined him again for a bit of tickling. I said good-bye as he grabbed his friends hand and brought it to his belly to ask for more, lol.
The teacher wanted to share a cute story as I walked out so I lingered just long enough to see his friend bring him by the hand to the “swing room” (the OT room which is connected to the classroom.) They were redirected by one of the aides because it is NOT swing room day and they took off, hand in hand, to find something else to play. Just so sweet. He’s going to miss “his” girls next year. They will be old enough to move up to Jr. K next fall and Monkey will most likely be staying in the same classroom for another year. He may catch up to one or more of them again in Kindergarten but we have school choice options so they could end up anywhere in the city. We’re not yet certain which school we will be requesting for Monkey.
Duhdee and I have been flooded with arts and craft projects since Monkey started pre-school last September.
He’d never had the interest or the attention span before to really work on anything with us or his therapists but now that he’s in a classroom he’s discovered his inner artiste. He’s also discovered a muse…or rather muses (what can I say he’s a ladies man.) The result is that we are now bringing home tons of paintings, drawings and pasting projects.
We pick our favorites and toss the rest but we still have TONS of art projects. What to do? I finally had a brainstorm. We live over an hour from both sets of Monkey’s grandparents and what better way to share him with them than sharing his creative endeavors? They certainly seem to appreciate it and I appreciate seeing the top of my dining room table, lol.
We still have a ton of projects, we brought home another 7 or 8 this morning. I think perhaps I need to expand my mailing list. Anyone want an original piece by Monkey? Only the joint project with one of his muses is off limits. I think her love note to him written across the top makes this one memory box worthy…as soon as I find out which of the lovelies wrote it. I’ve narrowed it down to 3, lol.
