Tuesday, November 30, 2010

communication 101

I've received a couple of emails lately related to speech, so I thought I would post some of my response here in case anyone else came looking for similar information. When Punkin was 18 months old, it was clear that he knew I was the most important person in his world, but never looked to me when asked, "Where's mom?" He didn't know labels for objects or people, which is a common problem for children with Fragile X, autism, and other developmental disabilities. Here's what I did.

I used my digital camera to snap a bunch of close-up pictures of some of his favorite toys, people, and most important objects: his toy truck, his sippy cup, his high chair, me, his grandma, his grandpa, etc. I printed them at a local store and slid them into a small photo book. Then I wrote the words on the sticky labels and stuck them on the bottom of the pages. You can also print off the sign language signs off the internet and stick them on the page or slide them in the page next to the picture. Then just "read" them book with your child. This may be easier said than done, I understand. (My son loved being read to at that age, but he doesn't like it very much now.) Be sure to point out the actual object with the picture if possible. For instance, if you are on the truck page, point to the picture and say, "truck," then pick up a toy truck and say, "truck." This helps make the connection. If you can get the sign in there, that's even better. It's one more visual aide to assist learning. Sign is never a bad idea as long as you pair it with speaking. My son learned that everything has a name this way. It worked for us.

After he picked up a few words from that, I was able to make a communication board using those same pictures. I took the sippy cup picture, the blanket picture, and several others and used velcro to stick them to an old piece of furniture. I showed him how he could hand me the picture, while saying the word, and then get the object. This took a little longer, but it helped with decreasing the frequency of crying fits. And even if he was already crying, I could say, "Can you show me?" and he could sometimes find the picture of what he wanted from the board.

Once you get this mastered, you can move to Boardmaker, which is the standard program that is used in special education classrooms. It's expensive, so if you can't afford it, ask your speech pathologist or occupational therapist if she has it and can print some pictures off for you. You can also use clipart. The idea is basically that you're moving from real pictures to representative ones.

There are options for voice output devices as well. They range from one button switches that you can record to say anything you want when pressed to thousand-dollar multi-button electronic devices. For example, with a simple one button device, you press the button and it says, for example, "juice, please" and then the child either learns to press the button every time to fulfill that need or hopefully learns to say the words herself because she hears them modeled. Here are pictures of what these devices look like and an article about how they can help.

If your child does have Fragile X, it's been shown that results are best when eye contact is not demanded and when the instructor sits next to the child. Most activities should be play-based to ease anxiety and to get the most out of the sessions. It's sometimes difficult to convince professionals, specifically speech pathologists, not to demand eye contact, because they think the child isn't listening. This is not the case with children who have Fragile X. Allowing them to look away increases their ability to concentrate and take in information because it isn't as visually stimulating.

I hope this information helps. I'm certainly not a professional myself, just a momma who's been through a lot with my kiddo. If you need articles or advice from experts, the National Fragile X Foundation offers their Foundation Quarterly online through their website. They have really good information in those. It's along the right-hand side of the front page. Also, you can email them and they will email you back. I have done this several times and they have been very pleasant and helpful.

(I will post this here now and may move it to a tab up at the top later. I just wanted to make sure it was seen.)

Monday, November 29, 2010

relationships are full of compromises

I realize that this is a horrendous photograph, but I just wanted to finally show you what my son looked like on the day we put up our brand new Christmas tree. On November 5. He has pants on under those swim trunks, FYI, and those are swim goggles. Also, I don't recommend taking a child prone to perseveration Christmas tree shopping unless you intend to purchase and set up the tree that same day. Just sayin'.

Friday, November 26, 2010

go see da train!

While Oma, Auntie, and I were finishing up dinner preparations yesterday, Opa was busy entertaining Punkin. Opa may have suffered some minor bruising in the process, but I think they both had fun.

Punkin has always liked trains (they have wheels!), but he's become fascinated since we visited the Festival of Trees and saw their expansive German village with five trains running simultaneously. I'm pretty sure he would have sat there the entire day. Opa's train isn't quite as fancy, but it's just as exciting when you're five.

Saturday, November 20, 2010

i don't even care that i got charged $40

On November 5, I wrote on my Facebook wall that I was missing a tube of prescription face cream and my toilet was broken. Three visits to my apartment later, the maintenence people couldn't locate the source of the problem and I was unable to locate my rather expensive face stuff. The toilet kinda worked after I showed them a part that needed replacing.

On November 16, I wrote, "I'm tired of being a grown-up. My toilet overflowed again." That is 11 days later. ELEVEN DAYS.

Well, long story short, the landlord fired the property manager and hired a company that has their own maintence people. They came out on the 18th (that's THIRTEEN days after the initial problem) and when I came home I found this note:

In case you can't make that out, it says, "Toilet works. Tube of cream stuck in toilet."

HA!

Monday, November 15, 2010

i can say "i told you so" to the internet

I'm the type of girl who breaks things. I also happened to have given birth to a child who breaks things. We own it; we know what's up. Because of this, I make sure to purchase warranties that cover accidents and other sorts of breakdowns. I even buy roadside hazard for my tires.

When I purchased my last notebook PC I had the opportunity to purchase a rather expensive warranty from Best Buy and considering I was replacing a notebook whose motherboard had failed, it seemed wise to just go for the whopping three-year deal. A month later Punkin threw a toy and cracked the screen from corner to corner; they replaced it with no questions. A year after that they replaced my power cord. And just a month ago they replaced my battery. So far the warranty has paid for itself and the Geek Squad has been extremely pleasant.

When I had the battery replaced I also told them that the computer was failing to boot. It would take maybe five or six tries, often showing a black screen, and even then would boot very slowly. Of course it booted just fine, if not a little slow, for them, and they basically told me that I needed to wait until it was completely broken before I brought it in again. It just wasn't broken enough and the warranty company wasn't going to pay for them to take my computer apart and figure out what was wrong with it.

Considering my warranty is up in April, I certainly didn't want to wait around for the thing to fail in say, June. Their answer irritated me, but I felt stuck until, like the toilet situation, the proverbial and literal poo hit the floor the week we were quarantined. The computer would not boot AT ALL.

So the quarantine is lifted, I have respite, and it's finally my chance to be able to take the machine in to the Geeks and make them admit that there's a problem. It's obvious! Except he still tries to argue with me because he pressed a couple buttons after a minute or so and got it to boot. Because that's normal.

I texted my friend Jennie, "I think I just used the teacher voice."

I think my exact words to them were, "I paid a lot of money for a warranty and I really don't think it's too much to ask for you to honor it. I'm not taking this machine home. It's a paperweight."

They took the computer in for diagnostics; the hard drive failed. They replaced it for free. But now I have to order recovery discs from HP and have them installed. So we're looking at another week and a half.

Between this and the toilet I feel like people just don't believe me when I say things are broken. Is it the blonde hair? Honestly, maybe they just don't want to pay for me anymore. But like I told Jennie, "It's not my fault they sold a warranty to a girl who breaks stuff."

Saturday, November 13, 2010

almost a poop story

While Punkin and I were quarantined for Pertussis, I posted the following to my Facebook page: I'm missing a tube of prescription face cream and my toilet is broken. Anyone see where this is going? (My cousin found this to be infinitely amusing. It's okay if you laugh, too, I won't ever know.)

This was on a Thursday night and the toilet had just overflowed. While I was cleaning up the mess in the bathroom I needed more towels and walked out into the hall to see Punkin smearing strips of paper around in about a half a can of overturned Pepsi on top of the glass end table. And the age-old mother's conundrum hit: Which mess do I clean up first? I opted to save the carpet/punish the child before sopping up toilet water.

I called my apartment manager and left a message. She called the next day and said she'd be over to look at it while we were at my parents' house. That night it still wasn't working properly, so I called her again. Turns out all she had done was plunged it. Super helpful. Hadn't thought of doing that myself.

It overflowed again the next morning and I left again to wash towels and buy groceries since Punkin's test came back negative. Supposedly they came that day with snake to look in the drain. On Monday the thing was STILL not quite right and I was about over the edge, so I called my landlord who assured me that someone would be coming to take the toilet off of the floor to look at it the following day.

Let me say that I change the diapers, clean up the vomit, and wipe the noses of other people's children all day every day. I don't have a glamorous or particularly yummy-smelling job. I also watch my son eat, which generally involves rubbing condiments in his hair and picking up cottage cheese with his fingers. But I really don't know how plumbers do it. The rancid smell eminating from the bathroom as that brave man searched for the clog was quite amazing.

And he didn't find anything. An hour and a half later he put the toilet back with no face cream or other foreign objects discovered. It did flush again, though, so I thought we were back in business. Until it didn't STOP flushing.

Yep, there's a part inside the tank that's broken and I have to manually replace it every time we use it. That doesn't feel yucky at all. So I called my apartment manager, a week after the first time I had originally called her, and told her the problem. It's now Saturday and I'm wishing on a star that when I go home it's replaced. Who wants to take bets?

Sunday, November 7, 2010

the things i do

It's me, milking a fake cow. Just for you, George, 'cause you asked so nicely. :)

Friday, November 5, 2010

pink's back, babydoll

Punkin picked up his favorite blanket at bedtime, started crying, and threw it over the footboard, crying, "NO WAN NIT NO MORE!"

Uh, okay. Think fast. Think fast.

"NO WANNIT NO MORE! NO WAN NIT!"

"That's okay!" Think perky. "You can pick a NEW blanket!"

"NO WAN NIT NO MORE!"

I pulled out a Rubbermaid, "There's a blue blanket, there's one with footballs . . ."

"Booballs."

"there's one with a raccoon playing baseball."

"NO WAN NIT NO MORE!"

"There's a green one. Oh, it's soft. There's a pink one. Look at this red one with Mickey and Minnie."

He stood, hands on hips, for about 45 seconds, "Hmmm. Hmmm. What one a ya want? Hmm."

"Pick one, please. You can have any of them."

"MY PINK! MY PINK! DIS ONE!"

"Okay, get in bed."

"Is mine?"

"It's yours."

"My pink?"

"It's your pink blanket."

"On on on na bed?"

AfterI laid it out on the bed, he stood and twirled, "Is great! Is beauful!"

"It is beautiful."

"Night, mom."

Wednesday, November 3, 2010

pick, pick, pick a fat pumpkin

"A PUMPKIN! A PUMPKIN! I GET IT! I GET IT!" He proceeded to fill a wagon with various pumpkins and pull it around the field, which I'm not so sure pleased the driver of the wagon that took us out there. Oh well! Can't please everybody now can we?

Before the giant meltdown at Auntie's, we decided to go to a pumpkin patch. This pumpkin patch had a KITTEN PALACE (oh yes it did), a giant sandbox, a swing set, a fake cow for milking (I may or may not have a picture of this), a petting zoo, and a super stinky barn with chicks. Super stinky. Auntie insisted on going in there. I said no, but she REALLY wanted to see it. As the three of us ran for the door, mouths covered and gagging, I may have mumbled an, "I told you so."

After the meltdown we hung out for a bit and then took Punkin to dinner, where he was an angel. He continued to show off his mad skills as he wrote As, Es, and Ds all over his notepad and ate his salad with impressively low gross-out levels.

The next day was Trick-or-Treat and I have yet to hear the end of "My pumpkin? My candy?" Although the real highlight was when a woman gave him a bag of snack size Doritos. If you felt the earth shake at 6pm on Sunday night, it's because my child was THAT happy.

It was a good one. Thanks, Auntie.

Tuesday, November 2, 2010

the one where i don't have the answers

I had the distinct pleasure of taking my son to my doctor with me today (asthma issues). And then we went to his doctor. And then we went to a lab. You know who has lots of paper? Doctors. You know who likes paper? My son. It was super fun.

Pertussis, better known as Whooping Cough, is making its way around our area, and since Punkin has some symptoms they decided to go ahead and test, quarantine, and treat him to be safe. That means we can enjoy nothing but each other's company until Monday! That's five more days, y'all.

Do you know how they test for Pertussis? A swab up the nose. That was good times. Took three people. And they wanted him to wear a mask! HA! A mask! They're so funny.

Anyway, life has been interesting lately as his anxiety levels have seemed to sky rocket over recent weeks. He's afraid to go into any room that isn't part of his typical routine, he has wet the bed several times, and like I said in a previous post he has started crying any time I leave him except at school.

Over Halloween weekend we went up to visit my sister and he asked for a snack. I gave him several options and he chose a Pop Tart. He sat down with it and immediately started fake crying and asking for Lucky Charms. I said no, he chose a Pop Tart. This continued for several minutes until the Pop Tart ended up on the floor and toys were ricocheting off the walls. It ended in my sister and I restraining him for at least 20 minutes until he could refrain from hurting himself, hurting us, or damaging anything in the apartment. It sucked. He was stuck, red faced and overcome with tears, in a complete meltdown that he wanted no part of until finally something clicked and he let go of the tension.

Now, I know this wasn't really over a Pop Tart, though it seems that way on the surface. There was some kind of communication breakdown coupled with not getting his way and being tired and being in a different place. It all added up to overwhelm him. And I know he wasn't being naughty. And I know he hates meltdowns as much as I do, though I don't think he fears what will happen 5 or 10 or 15 years from now. But I don't know what to do about it. What's the next step? Do we try Zoloft again? Do we try therapy? Do we go see Dr. Berry-Kravis? Where is the instruction manual, people?!