I’m way busy at the moment (vacation fast approaching) but I HAVE to share this…

Pasted from IM (yes, that short on time):

[17:55] Umma:
[17:55] Umma: holy crap!
[17:56] Duhdee: tell me about it!
[17:56] Umma: lmao
[17:56] Umma: crying
[17:56] Umma: lol
[17:56] Duhdee: lol
[17:56] Duhdee: he’s in his boxers has been most of the day
[17:56] Duhdee: he just walked in there… lifted the lid and went
[17:56] Duhdee: lmao
[17:56] Umma: woah
[17:56] Duhdee: by the time I got in there he was peeing!

How cool is THAT?

I’m not sure who needs more “training”

For the last two or three weeks (time gets away from me these days) we’ve been actively potty training and we’re having some success, I’m happy to report.  Monkey was NOT a fan of potty training at the beginning, every time we asked him to use the potty he’d sign “all done” and run off saying no, no, no.  We finally discovered that Monkey is much more willing to use the potty if we allow him to stand up at the toilet and we don’t try to make him sit down on either his potty chair or the toilet with a Monkey-sized seat insert.

We also discovered that Monkey covets Duhdee’s boxers.  After each trip to the potty he began running to our bedroom and stealing a pair of Duhdee’s boxers from the drawer.  He would concentrate very hard on getting those boxers pulled up to his armpits.  He could have spent a little more time making sure the boxers were right side up first but I suppose he just hadn’t gotten to that bit yet.  It really was quite cute.  We tried to convince him that the tighty-whiteys with SpongeBob and Lightening McQueen were just as cool but he was having none of that.  Last weekend at Old Navy we found Monkey sized boxers and the child is in heaven now.

So he’s now willing to stand at the potty, he’s willing to wear something other than a “‘per!” on his bum, and he is able to stay dry for a few hours at a time.  He’s still not telling us that he needs to go, we have to catch him.  We sometimes get a clue (he’ll cross his legs or grab himself …nice, I know) and we can get him to the toilet but just as often we miss the clue or there is no clue and we end up with a wet ‘per or wet boxers.

We’ve had a couple accidents (I will be over the moon the first time he goes poop on the potty and I manage to NOT get it on myself in some manner) and we’re not always the neatest (really, the worst was a public bathroom and honestly, how likely is it that he was the FIRST person to pee on the floor that day anyway?) but we’re making progress and we’re all pretty happy about it.

One day we will no longer have random, used (but dry!) ‘pers lying around the house like forgotten toys.  We will no longer be at the beck and call of a kitchen timer.  AND hopefully, one day, I will be permitted to not throw my arms over my head and scream and jump around like a fool over every drop that lands in the toilet.  In the meantime, though, it’s not so bad…in fact, it’s kind of fun!

Successful shopping.

On Sunday, before we went to NH for our nephew’s 2nd birthday party, we decided to go shopping at Toys R Us.  We needed a birthday present and we had some good coupons so we thought we’d take our time and pick out some stuff for Monkey as well.

We were able to pretty quickly narrow down the birthday options, we wanted an outdoor toy.  That may not sound like much but that does eliminate about 3/4 of the toys at TRU, lol.  We found a lawn mower that you push and bubbles come streaming out.  It was the hit of the pre-school set, btw, if anyone needs ideas for a 2-3 year old boy or girl.

We had a coupon for a free Thomas train as well so we browsed through that section and found a new engine (Spencer!) for Monkey.  He’s a big fan of the Trackmaster trains (motorized, not wooden) and he’s gathering quite the collection.  It took a while to drag him away from the train table but we eventually succeeded.  We found this wooden puzzle with colors and shapes, both things we’re working on at the moment, so we grabbed it and then died from sticker shock.  Really?  $20 for a wooden puzzle?  I need to go to more yard sales!  I got one for $.50 the last time I went out looking.

After this stop we decided that we needed to go to Old Navy.  Duhdee needed a new pair of shorts* and we wanted to pick up an outfit for the older nephew as well since he hadn’t yet received his present and we were giving a toy and clothes to the younger…we’re all about fairness here.  While Duhdee was shopping for clothes for his nephew I chased Monkey and “redirected” him away from the door.

Basically, I was the border collie preventing my charge from running into the street.  At one point I had him cornered in the back of the store where I could let him out of my sight because there was no escape route.  Suddenly he reappeared.  He was holding a small brown stuffed bear by the ear.  Monkey doesn’t do stuffed animals (at least not since early last fall when he abandoned his blue bear.)  He looked at me, then looked at the bear and pointed at it.  “Bearr!”  “Yes, it is!”   He then hugged the bear and held it to his shoulder like it was a baby and said “Awwwwww!”  And then I died from the sweetness (which is, FYI, a whole lot nicer than dying of sticker shock.)

I quickly herded Monkey over to his Duhdee, sure that he’d toss the bear aside at any moment and run off toward the exit again but he didn’t.  In fact, he cuddled the bear for the rest of our time in the store and then marched off toward the check-out with us sighing “Awwww” over his bear.  Of course, we bought the damn bear which is a good thing since he threw himself to the ground to have a fit when we had to let the cashier ring it up.  He was good as gold once she handed it back.

It is a darn cute bear.

*Is this a guy thing or is it just my husband?  He has like 2 pairs of shorts and 2 pairs of pants that he wears all the damn time.  When they get worn or get HOLES he waits until he judges them to be “bad enough” and then he buys a replacement pair.  On Sunday, he found an identical pair to what he was wearing (they had a ripped hem) and swapped them in the parking lot (he was sitting it the truck but still.)  The ripped shorts are now “yard shorts” which means they’re reserved for the neighbors vs family now.

Here enters the cavalry…

This is a Fragile X Memory from before our Fragile X diagnosis.

At Monkey’s 12 month check-up his pediatrician was a bit concerned about his lack of babbling.  She asked us to set up another check-up for 15 months so that we could gauge his progress.  She reassured us and told us not to worry.  When his 15 month appointment arrived he had made no progress on his speech and at that point she gave us a referral to our local Early Intervention providers.

There is sometimes a long wait for an EI evaluation but we were seen fairly quickly.  The two woman who did the screening were a developmental specialist and a physical therapist.  We were very surprised to learn that he had global delays.  His speech delay was the most pronounced but he was lagging far enough behind in gross motor and fine motor development to qualify for services there as well.

We quickly set up a schedule of services and soon (what felt like) an army of young woman were traipsing in and out of the house 5 days a week while I was at work.  The developmental specialist and the physical therapist who had performed the evaluation became his case manager and his physical therapist, respectively.  An occupational therapist and a speech therapist rounded out the team.  They were all very nice and Duhdee, in particular, was appreciative of their efforts.  Monkey and I were not that happy.

Monkey, with his stranger aversion, was probably the most unhappy with this turn of events.  Suddenly there were strange people in and out of our house and they all wanted him to INTERACT.  The horror.  He spent a lot of time avoiding but we were so fortunate to have a very stable team.  Over the  20 months that we received services his team remained nearly intact.  He was able to develop bonds with each of his providers over time.

My reaction to all this is interesting to me, in hindsight.  I was not grateful for the help.  I took every comment or suggestion as an indirect insult.  I cannot tell you how many times I thought “Do they think I’m stupid?  Maybe they think we keep him in a box when they aren’t around!”  I probably even said those things outloud to Duhdee a few times.  Prior to receiving his diagnosis I was convinced that we were doing something wrong, Monkey was fine, we were just idiots.  We had no business having a child if we couldn’t even teach him to talk, for goodness sake.  So all these feelings of being a failure as a mom manifested in a simmering rage at the lovely folks who were helping us and helping him.

I’m not proud of how I felt about the situation, I think (I HOPE) I was more friendly to them than I felt at times.  If I was not, I hope they understood that it was not them that I was angry with.  I was feeling like a failure, I felt helpless and that came out in anger.  Ultimately, I did come to appreciate his team.  His developmental specialist, in particular, became very much a part of our inner circle.

After our diagnosis she accompanied us to a myriad of assessments, she spoke the language of the therapists and we felt so better to have her knowledge and support.  She also accompanied us to a Coffee Talk presentation and brainstormed with us as to how we could use this new knowledge to improve how the team worked with Monkey.  She went so far above and beyond what we could have ever hoped for.  She even arranged for her best friend to babysit for us on a few occaisions (she couldn’t do it b/c he was a client.)  After he turned 3 she babysat for us just to have a chance to see Monkey, she loves him so much.

At this point I think his entire team has left EI which is a terrible shame.  Low pay, too much work and no appreciation from management took their toll and these amazing women have moved on.  I know they will go on to use their training and skills to help other people, I’m just sad for all the little kids who won’t get to have the experience Monkey had.

Our little trickster…

Monkey outsmarts us on an almost daily basis.  I keep thinking to myself “I need to blog that!” when he does something like this but it slips my mind.  I have a few recent examples to share though.

1.  Monkey looks at Duhdee and points toward the floor.  He’ll sign/say “Help, look!”  If this doesn’t work he will get down on the floor (with sound effects to let us know exactly how hard it is to get down on the floor, you’d think he was 40 not 4!) and look under the couch.  At this point Duhdee usually gives in and gets down on his stomach to look under the couch.  Sometimes there is something under there but most times it’s just an elaborate ruse to get Duhdee on the floor so he can jump on his back and tell him “go!” which is Duhdee’s cue that he should crawl around with a giggling Monkey on his back.  Once, when I kept refusing to fall for this trick, Monkey placed something under the edge of the coffee table so I could see that there WAS something under there to look at!  Yes, I then “fell” for it and he got his piggy back ride.

2.  This past weekend we were visiting Duhdee’s sister at the campground they spend summers in.  There is a pond across a small field from their campsite and Monkey is OBSESSED with getting to that pond.  Duhdee and I took turns chasing him down and heading him off.  After a while a game of baseball started up amongst the other kids.  Monkey saw his chance.  He grabbed the baseball and threw it to his left and Duhdee chased it.  Monkey ran to the right and headed straight for the pond.  It might have worked too but I was right behind him and Duhdee did realize what he was doing right after he turned away from Monkey, lol.

3.  On Monday, at 5, Monkey was looking for Duhdee to turn on the TV so he could watch Curious George.  Duhdee always turns on “George” while he cooks dinner but we’ve been cutting back on TV time so…he told Monkey no, that he could use the computer instead.  Monkey was not impressed and stewed over it for a few minutes.  Duhdee next heard “George” on the television in OUR bedroom.  What??  We have hidden the remote control to prevent just this sort of rebellion!  The kid has learned to turn the TV on and change the channels using the buttons on the front of the TV.  That tactic didn’t last very long!  Monkey is going to be very disappointed when that TV disappears I think.  Darn kid!

An aside, the folks at the clinic were very impressed that Monkey has learned which channels “his” shows are on.  He flips between 2, 11, 16 (the 3 PBS stations), 24 (Disney) and 25 (Nickalodeon).  From what I’ve been reading lately though this is a pretty common FX skill 🙂

Inspired by Sunny Day…

When Monkey was younger he played with a Leap Frog Fridge Farm magnet set all the time.  I had a stroke of brilliance and bought him the Leap Frog Fridge Phonic set and he promptly abandoned ALL of the magnets.  Bugger.

Recently Sunny Day posted about the phonics set and mentioned that she only leaves a few of the magnets out at at time for, in her case, mess control.  A very small, dim bulb wavered over my head and I thought, hmmm…I wonder if leaving fewer of the magnets would see less overwhelming to Monkey?

I came home and promptly removed all of the magnets from the fridge except for the letters of his name and within 5 minutes Monkey was exploring them.  Woah!  So thank you to Sunny Day for providing the spark!

I know you are all DYING for an IEP update.

Heh.  I’m so sick of this.  I cried at Duhdee the other day “And he’s only FOUR!” I cannot believe we have…uhhh…too many more years of this ahead of us.

Anyway, I spoke to our advocate and she advised me to call (and e-mail) his team chair.  I don’t know why I didn’t think of this before!  She was not present at the last meeting and I think that’s the fastest way to cut through the BS.  So, I called her and told her that the meeting got off track, that we had agreed to update his goals and add a summer program to his IEP, then reconvene in Sept. to discuss the rest.  I also told her we still haven’t seen an IEP that meets these two (and only these two) requirements.  I told her that I don’t want to sign it until we go back to his February IEP with ONLY these two changes.  I also told her that I don’t want to reject in part, which is our other option if they can’t give us what we had agreed to sign, because we don’t want the Department of Education getting involved (which they would automatically have to do if we reject.)  So, that’s where we are at.

If his team leader can get us the report we want quickly enough we’ll sign it.  If she can’t, I have a list of issues so I can reject it in part and we’ll have to let the DOE get involved which I don’t think any of us want at this point.  There’s no reason we can’t handle this ourselves without mediation.  Either way, we’ll be signing something and returning it to them so that he can go to the summer program.  It’s up to them to decide which route we take.

Our advocate also is now up to speed on what went wrong last week, what we have coming in for reports/information from the Fragile X clinic and I think she understands how far apart we are right now on placement.  I’m glad we have the summer to plan for this, I need a little time to recover from the stress of last week!

***CUE THE ANGELS**** We have an IEP we can sign!  WOOT!  WOOT!

The Fragile X Clinic (Day 2 of 2)

On Friday we were back at Children’s Hospital for the genetics portion of the yearly evaluation.  There was quite a crowd this year.  Besides Monkey and ourselves there were 4 other people in the room for this part.  This visit gives them a chance to observe Monkey and ask questions about seizures (none), eye problems (none), heart problems (none), etc.  It also gives us a chance to voice any concerns and get some great advice/input.

We discussed the toileting challenges we’re facing.  Dr. Picker suggested keeping a food diary to see if we can pinpoint foods that might be related to his excessively soft stools.  We haven’t set this up yet but we’ll get there 🙂

We discussed our concerns with Monkey’s ability to focus and sit still for learning, this seems to be a constant source of comment from his teachers and therapists.  Duhdee and I are well aware of his high activity level.  The child does not stop moving.  We take a tag team approach to get through the day.  On a good day we’ll take 30+ minute shifts, sometimes a few hours…but on bad days…we will drag though 10 minutes of chasing him before we cry uncle.  It is tough.

Since ADHD is common in boys with FXS they are going to take a closer look at his Connors scores.  I did one on Thursday and we’re going to have his summer teacher rate him as well.  If they look “off” we’ll have to consider medicating him.  They really don’t want to do it at this age, it’s hard to even diagnose ADHD at this age, but if it’s holding him back we’ll do it.  Personally, I’d like the school to implement a sensory diet and a behavior plan before we jump to medication.  I am not convinced they’re committed enough which is unfortunate.

We also discussed Monkey’s PDD diagnosis.  It was first given to him a few months after he was diagnosed with FXS by doctors who were not familiar with FXS.  At that time they said that it COULD be the FX and that he’d lose the label at some point but that it would make us eligible for extra services so we didn’t argue.  Dr. Picker doesn’t see autism when he looks at Monkey.  He said he’d be surprised if he kept the label but he also said that if the evaluator is not familiar with FXS that he very well could get a straight autism diagnosis and lose the PDD.

Duhdee and I feel that the school looks to that PDD too heavily.  They’re not focusing on the whole child, they’re focusing on the PDD aspect.  We’ve put off having the additional screening because we were worried about the evaluator confusing FX symptoms with ASD symptoms.  Dr. Picker knows of a psychologist, however, who is very good at recognizing the differences between FX and ASD.  He said that even though he does not see it, if she sees it and gives him that label then he’ll be confident that it’s proper.  That’s all we can ask.  He’s going to see if she thinks we should do the evaluation now of if we should see how the school situation plays out.

We also discussed the benefits of extra OT.  The OT did say that it would benefit Monkey to get extra OT but our insurance company is notoriously difficult to work with on this.  I am going to see if we can get the OT covered on my own first but they did indicate that they would write a letter of medical necessity if we have any trouble.  Of course, even that does not give any guaruntees.

Dr. Picker commented on how very well Monkey is doing overall, he said he’s seeing great maturity from him and physically he’s doing great.  He’s going to work with our pediatrician on a couple of things (folic acid and ultimately ADHD meds if necessary) but he thinks we’re doing as well.

Oh, and, I was brave and asked for help for me too 🙂  I asked for a referral to a psychiatrist who has at least a basic understanding of FXS carrier issues.  I should be seeing that soon.  Also they’re starting a support group for FXS carrier moms through the clinic and I’ve asked to be included in that as well. 

This was a great way to end a very stressful week!

The Fragile X Clinic (Day 1 of 2)

On Thursday and Friday we went back to the FX Clinic for Monkey’s yearly evaluations.  Thursday was the long day, he had a psych evaluation and his OT evaluation, the two were scheduled to last for a total of 5 hours combined with a break for lunch in between.

The fabulous Dr. G conducted the psych evaluation again this year.  Monkey hadn’t seen her since March when it was decided that we had the tools we needed to continue with her behavioral plan.  We did update her in May when the plan finally reached it’s primary goal of Monkey walking into his classroom under his own power.  The room she uses is really, really small.  Monkey normally doesn’t mind it but he was struggling on Thursday for some reason.  I left the room to fill out REAMS of paper evaluations while Duhdee stayed with Dr. G and Monkey.  After she had finished I went back to the room and we discussed current issues and concerns.

We gave her copies of the various reports and IEPs that the school has provided recently.  She had some concerns with the goals that were proposed (and those on his last IEP) because they were too vague.  She wants numbers and measureable goals, not language like “will improve self-regulation.”  She also wants to see academic readiness skills on there, colors, numbers, shapes, recognizing the letters of his name, etc.  She feels like this year was a bit of a waste for him.  He DID make progress, of course, but she feels that if he had been given the proper behavioral supports that he could have done so much better.  She doesn’t want to see that happen again. SO, her report is going to include a lot of very specific goals and behavior related suggestions.

Our meeting with Dr. G ran over so we had to ask the OT to delay the evaluation until we could eat lunch.  Only in Boston is it going to cost you almost $30 for 3 sandwiches, 2 drinks and fruit.  Oh my.  Monkey did eat the tuna salad though which is nice, he’s never been a fan of sandwiches (besides PB&J) so we weren’t sure what to expect.

After lunch I had to go back to work.  The evaluations and the IEP happened at the very worst time possible from my perspective.  I am basically doing the job of two people last week and this coming week.  Ugh.  Duhdee took Monkey to his OT evaluation and he did GREAT.  It was the same OT as last year and she could not believe it was the same kid.  Duhdee left the two of them alone for the evaluation and sat in the waiting room and it seemed to work wonders for Monkey.  One of the goals on last year’s IEP was to build a tower of 6 blocks, the OT left it on the IEP for this summer/fall because he hasn’t met it yet.  He did during the evaluation so I guess we can update that one now.  He has made 5 months of progress in the last 12 months which is a bit discouraging but he is showing so much more maturity.  There are a couple of skills that are holding his score down that were not put on his IEP previously so she is going to recommend those goals for next year.

So that was day 1.  He had a rough AM session but bounced back for the PM session.  We are going to get some great, specific goals from both evaluators in their written reports which we’ll provide to the school.  We should be in good shape for our next meeting.

Day 2 up next but we have a family barbeque today in New Hampshire so I need to get motoring 🙂