One small change is paying off big time here.

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 🙂 

How to make 2 moms cry.

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.

So did I mention that we’re back?

We had an absolutely fabulous time visiting with my family.

Duhdee and my dad spent a lot of time fishing with mixed results.  Duhdee managed to somehow catch fish that were not much bigger than the lures he was using, that takes talent.  My poor dad said he needs to “reset” his fishing rod so that it catches the proper sized fish again, lol.  Twice during the week I dropped Monkey off at the boat launch so he could join Duhdee and Grampa out on the boat for a few hours.  He LOVED it.  Grampa’s boat has lots of gadgets with buttons and he was captivated but all the mischief he could get up to.  Grampa was pretty laid back about it all but he was glad Monkey didn’t discover the button to raise the engine on the boat out of the water until the very end of the last day on the lake.  Here’s hoping Monkey forgets that little tidbit before our next trip (but who really thinks he will???) since having the motor out of the WATER makes trolling and returning to dock a bit difficult.

During my Monkey-less hours I indulged in a time-honored tradition with my mom.  Visiting yard sales!  I didn’t buy much, since everything we buy has to be packed up and dragged back home!  Duhdee had put in a request for a small cast iron skillet to join the two larger cast iron skillets I’ve already bought for him at yard sales and I was happily able to fill his order.  He really enjoys cooking with cast iron and I enjoy eating so I consider it $5 well spent.  Now he needs to season it, which sounds complicated and an awful lot like work so I’m glad it was his idea and not mine to buy it.

When Monkey and I were left to our own devices we spent quite a lot of time riding Grampa’s quad up and down the mountain.  Grampa bought us a special harness that lets us strap Monkey securely to our chest which means we can steer and control the machine and not have to worry about Monkey landing on his head!  It’s quite nice.  Monkey is OBSESSED with riding the quad.  He woke up every morning and headed straight for the harness and started signing “go, go, go.”  He even started saying it but it comes out “doe” and not “go.”  I would tell him every morning that he first had to eat breakfast, brush his teeth and get dressed before we could go and he was mostly OK with that answer the first 10-15 times, then he’d start to get very sad.  The boy can really tug a heart string too, let me tell you.  He’ll put his palms to the side of his head and CRY the most pitiful cry.  Such a sad Monkey.  But he still had to eat, brush his teeth and get dressed!  He was not all that impressed with me in the mornings.

Besides riding the quad his favorite vacation activity was throwing rocks in the little brook that runs through my parents’ property.  He could do this for an hour, easily.  The first couple of days were rough since my patience for this activity was quite short.  I finally smartened up and found that with enough bug repellent, a chair and a decent book I could outlast Monkey and we were all much happier.

Let’s see, what else?  He made up a sign for “fire” that includes a vocalization “Dir!” he does the “more” sign vertical instead of horizontal.  We tried showing him the correct sign but he likes his, thank you very much and will not be dissuaded.  I’m sure he’ll get it right at some point but for now I’ll add this to the list of quirks (like everything animal-ish that is not our dogs = cat!) that I find so charming about my little Monkey.

The last night we were at camp I had hoped to get ice cream, go “moosin'” and then have a camp fire.  That’s a pretty ambitious schedule with a 4 year old when you finish dinner after 7PM and town is 7 miles away. When we returned from moosin’, Monkey was ready for bed so I put him down and then joined everyone else around the fire, clutching the baby monitor in my hand.  I heard a little bit of initial giggling but then it was quiet and we assumed Monkey was asleep.  NOPE.  The reason I couldn’t hear him on the monitor was because he’d gotten out of bed and come downstairs to turn on the TV (TV does not work, it’s there for DVDs) and then decided to lay down in front of the TV that wouldn’t turn on for him.  Duhdee found him there on the floor (still awake) when he went inside for a bathroom break.  Monkey then joined us for a half hour around the camp fire and I was a happy Umma indeed.

There are lots of little stories to share about the new things that Monkey is doing and the things that he’s saying.  I need to get a little bit of sleep though.  I will end with probably the highlight of the trip though…

Monkey is very uncertain about his Grampa.  We don’t see as much of my parents as we’d like and when we do it’s usually an “event” so it’s noisy and busy and we are all running every which way.  Monkey does fine with this busyness it’s just that he doesn’t get very much one on one time with anyone in particular.  And my dad is not one for sitting still anyway.  Even on vacation he’s always “puttering around.”  Seriously, he mowed their non-existent lawn (that’s a good story) TWICE in just over a week.  He just makes up work when he has too!  ANYWAY, the point is…Monkey is uncertain about Grampa.  He’s very shy around him and often leaves the room or hides his face when Grampa addresses him.  After spending the hours on the boat together they seemed to be bonding a bit.  Monkey was much more tolerant of Grampa’s attention, Grampa could even touch him!

The last hour we were at camp Grampa had us all pose for a family portrait in front of the big dirt pile (part of that good story I mentioned) and they used the quad as a tripod (we’re an inventive lot…also cheap, thus the improvised tripod but I’m guessing you got that cheap bit when I shared our mother/daughter yard saling tradition, right?) and he then had to put the quad away.  I thought this was the perfect opportunity to try to force a bit more Grampa/Monkey bonding and tried to put Monkey on Grampa’s lap for a ride.

Being the long, bone-less muscle that he is Monkey was able to effectively communicate his distaste for this particular idea of mine.  Grampa was disappointed.  I felt bad, really, I had just set my son up to REJECT my father, right?  Very smart move, Umma.  Ugh.  ANYWAY, I then had a brilliant idea.  I put Monkey in the raised seat BEHIND Grampa and showed him how to hold on.  He actually let me set him down and held on!  Grampa slooooowly drove down the driveway and Monkey went with him.  Screaming, of course, but with EXCITEMENT.  It was the cutest damn thing I think I’ve ever seen (except for this other new found skill that Monkey developed over vacation, that had both me AND my mom choked up from the utterly bittersweet…but mostly sweet…moment, that I’ll share later.)  My mom caught a few short videos of the action which I will share as soon as Grampa sends them to me.  I’m not sure who was more excited about the whole deal, Monkey, Grampa (who was glowing) or me.  You’ll even be able to hear Monkey and I screaming like fools on the videos, heh.  Bet you can’t wait.

Holy moly.  I guess I should have done mini-blogs while I was away.  I hope this didn’t give you a headache and I’ll fill in the teasers…later.  😉

OMG, OMG, OMG!

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] Duhdee: MONKEY JUST PEED WITHOUT BEING PROMPTED!!!!!
[17:55] Umma:
[17:55] Umma: holy crap!
[17:56] Umma: WOOOOHHOOOOOO
[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.