Survival Garbage Trucks

As you may have noticed, we have sitemeter on our page, which tells us how people find this blog. Most hits come from predictable places: through other Fragile X blogs, through our facebook pages, or from the Blogger navigation bar (which takes people to a random recently updated blog).

However, it is really fun to see how people find this blog when searching. Someone typed "survival garbage trucks" into Google, and lo and behold, the first listing is this entry. I guess this is our claim to fame.

"Mental retardation" vs. "intellectually disabled"

I'm not sure I agree with the current push to remove the phrase "mental retardation" from the national vocabulary. Yes, it's come to have negative connotations, but any phrase that means the same thing will get those negative associations, too. "Mentally retarded" is already the result of this process: it's a euphemism for "imbecile", "moron", or "idiot". We need some phrase we can use to describe the phenomenon. When my son is doing something unacceptable in public, and I say, "Pardon me, he's a special needs kid," people don't know what the hell I'm talking about. I suspect "intellectual disability" would lead to the same "huh?" reaction. But when I say, "I'm sorry, he's mentally retarded," it hits with the proper impact. People get it, or at least get something close enough that they know they should apply a different standard of behavior.

I do not like it when people use "retarded" as a generic insult or as a substitute for "fucked up", and will often gently point this out when I hear it. I feel the same way when kids use "gay" as an insult: it doesn't really do any good to come up with a new word for "gay" that isn't used as an insult. What we have to do is show people that it's not wrong to be gay, and that it's hurtful and destructive to use the term as if it is. Similarly, it is not wrong to be mentally retarded, and to use "retard" as an insult is cruel.

If people started using "cancerous" as a pejorative, the solution would not be to rename cancer "abnormal cell replication" in all federal statutes. It would be to socially penalize people who were insensitive enough to turn it into a term of abuse. I guess I feel that way about "mental retardation". It doesn't seem to me that the term is "only used to demean and insult people" as the ARC posting I link to states. But maybe this is a bigger problem outside my own social circle.

Comparisons are just getting weirder and harder all the time

Of course I know I "shouldn't" compare Quinn to other kids. Of course. He's his own little person with his own special gifts (like his adorable laugh and contagious joie de vivre). But frankly, it's just getting weirder and harder all the time, and I fear the comparisons will only become more stark and obvious as time goes by. Intellectually, I understand why this is. The gap between Quinn's and typically developing kids' abilities will widen because his rate of development, like most boys with Fragile X, is about half that of (give or take) other kids.

Today we tried a new play cafe. It was fun, and a special treat for Quinn and I since I'm usually working when all the cool play cafes are open. Quinn loved the ball pit, different fireman hats, and puppet theater (for playing peekaboo with the curtains).

It's just shocking, though, to see kids literally half Quinn's size and age, talking, running, jumping, going up and down stairs with ease, and engaging in what looks like very sophisticated pretend play, all of which are things Quinn cannot do yet. I know he will be able to do these things eventually, but there will be a point where other kids will start doing things that Quinn will never do.

It's also socially awkward because people seem to do a double take as my relatively big kid needs help with so many things, doesn't talk, and plays peekaboo with mom for a looooong time while other kids run off to play house in the pretend kitchen.

I also felt a bit jealous of other parents, sitting calmly drinking coffee for at least 75% of the time, while I'd say my sit-to-redirect ratio was more like 25% sitting, 75% redirecting. Most of the other kids didn't need to be told 5,000 times (in one hour) that the toys are "not for your mouth" or that you cannot just sit on other kids or touch their faces (Quinn seems oblivious to these social norms that other, much younger children, seem to get). Other kids didn't fall twice, bite their parents, or pull their parents' hair. I kind of get it why we are so tired and stressed.

And this was not at all a bad time for Quinn and me. This was just a normal time. Not a stellar, Quinn-as-superstar time, but not a bad time, which is much worse than what I've described above. This morning was what most activities with my little guy are like.

I can't imagine what it would be like to be out, sitting at a table drinking coffee, for at least 20 minutes while my kid played without incident. My favorite "other parent" example involved another mom, relaxing at her table, when her two-year-old (I know her age 'cause the mom told me) brought her a pretend pizza to eat and said "Pizza, Mommy." The mom said, "Thank you! I love pizza! Can you bring me some parmesan cheese to put on it?" The little girl ran off, happily, and was gone for another 10 minutes. Wow. So many things going on there that are way beyond Quinn's abilities. If this happened to me, I'd probably jump for joy and order a round of cappuccino and chocolate milk for everyone.

I know...I'm whining. I'm a lucky parent of a terrific little guy. But it is tough.

Beach Baby

As promised, here's the first of many pics we can start posting now that we've figured out how to get the pics from the new camera onto the computer. Despite our many miserable ongoing contractor woes (we just fired our general contractor, so it's pretty bad and we still don't have a furnace), we are delighted to be living in our new town. Quinn loves it too, and among his many favorite places here is the beach.

Quinn's new school

Before I start this post, I want everyone to know we will soon be updating LSFX with more fun pictures! We just got a new camera, but I haven't loaded the software onto my computer yet that will allow me to upload the photos.

Anyway, I was thinking that I hadn't said much yet about Quinn's new school, and it might be of interest to folks who are exploring educational options for their little ones who have FXS.

Quinn's new school is a lot like his early intervention program, which we loved, though the new school is a little less warm and fuzzy.

The program, designed for kids with autism, is about five and a half hours a day and uses ABA, PECS, TEACHH and other teaching techniques. It has a 1:2 ratio. Though Quinn does not have a diagnosis of autism, he seems to benefit from these techniques. He recently did get a diagnosis of PDD-NOS, which I don't entirely agree with, but that's a topic for another post.

Quinn's also still getting occupational, physical, and speech therapy, so no complaints there. We did recently have a 30-day IEP meeting in which things were cut slightly from our previous IEP, but, well, you have to pick your battles.

One thing I'm finding tough is that I feel like I know very little about Quinn's days at school. We have a "home-school communication system" (that's a quote from the IEP, folks, most of us would call this "system" a notebook), but the teacher's notes are rather brief - often just 1-2 sentences every few days. For example, one day the note was, "Please bring extra pants." And it's not like I can ask Quinn about his day. His old school teacher wrote long notes in his "home-school communication system", we met weekly with a parent educator who talked with us about Quinn's progress and ways to incorporate more learning at home, we were encouraged to hang out and observe anytime, and the staff in general were more chatty at drop off and/or pick up.

So that's one thing I'm struggling with a bit - it's hard to rant or rave about a program that I don't know much about. Any suggestions from others about how to get more info on what my kid is doing all day at school?

Yay! Drinking from a Straw

At his new school, Quinn learned how to drink from straws, even skinny juice box straws. It is an awesome superpower! Now we can go almost anywhere in the world, and Quinn can drink, even if we don't schlepp around his kiddie cups. Woohoo! One less item in the diaper bag!

Quinn has been able to drink from super fat straws for awhile, but he hasn't had the ability to close his lips tight enough for a normal straw. This has been an early intervention goal for a loooong time, because I guess being able to close your lips is essential for making some sounds. It has also been a hygiene goal because having lip/mouth control helps to hold back the drool.

Quinn has also been able to drink from open cups for awhile, but the risk of spillage has been too great to take advantage of that super power while in restaurants, unless we order an extra cup and poor a tiny amount from a larger glass into the extra cup. But that can be rather tedious over the course of a meal.

So we are delighted with the straw drinking. One of the things I enjoy about raising a special kid is taking pleasure in all of the little hard-earned accomplishments.

How good is the Fragile X Conference?

So we need some advice, fellow Fragile X bloggers. How good is the Fragile X conference? We had planned to go, but then realized it falls on the same weekend as our 5th anniversary. We have been planning to spend our anniversary at our favorite honeymoon hotel on Vancouver Island in Canada for years - pretty much since we left the hotel on our honeymoon!

We thought about going to just the first couple days of the conference, and then flying to Canada, but the logistics are complicated. Is it worth it to go for just two days? Do we bring Quinn with us to the conference? How is it for kids there? Is there childcare?

If we can't bring him, then we probably won't go because there's no way we can get someone to watch him for 5-6 days (a few while we're at the conference and a few while we're in Canada). I also couldn't bear to be away from him for so long. The longest we've been away from him is 24 hours, so contemplating just the 3 days for the anniversary trip is a lot.

Anyway, we'd love to hear from those of you who've been! Thanks.

Ch-ch-ch-change

So much has been happening lately, I haven't had any time to blog. Some quick catch up:

- Quinn is three! His birthday was a week ago. It's a little hard to see my baby growing up, but I can't be sentimental for long while being attacked with hugs and smiles. He just glowed at his party as he saw many people he knew come over. It was his first birthday that he really enjoyed. I don't think he had any idea why people were coming over and giving him gifts, but he had a fantastic time. I am so grateful for his adorable, affectionate, joyous presence in our lives, and appreciate all of the things he has taught me. I love being Quinn's mom.
- We all had a sad, sad last day at his early intervention program, and sad, sad goodbyes with his OT, PT, and ST. As you can see in the picture in the previous post, he started at his new school, and the transition is about as expected. Quinn seems apprehensive when we drop him off and gets fussy towards the end of the (longer) school day. But according to his teacher, he is having some fun there with water and play doh and music, so it seems like he is adjusting.
- Based on a recent assessment, Quinn will most likely qualify for "status 2" from the Regional Center. This means we will still get some continuing support from the Regional Center, like respite and case management, which is a relief.
- Our move was stressful (see below), but it's great to be in our new community. I'm enjoying the beautiful September weather (in the Bay Area, September is a warm, low-fog, no-rain month) and exploring our new neighborhood. Quinn is turning into a real beach baby, and I'm delighted because I have many happy seaside memories from childhood (the Jersey shore). Our new street is also much busier than our old street, which may seem like a drawback, but to Quinn it's a benefit. He is spending a lot of time jumping and gawking at buses and trucks.
- We are having major contractor woes. I really hope we have a usable kitchen, a foundation, and a furnace soon. This has put a damper on the elation I might otherwise feel about our exciting new digs to say the least.

Quinn's first day of new school

He seems to be settling in nicely!

In our new house

I'll have to add a picture to this later, but we are officially in our new house! We've been here since Friday afternoon. It was an challenging experience, as most moves are, requiring an army of helpers, including two professional movers, two grandparents, two professional packing assistants, a babysitter, two cleaning people, plus a salvation army pickup for a truckful of no-longer-needed belongings.

But the hardest part is behind us, so now we can enjoy the new home - especially once the kitchen and yard are usable. Right now, it's a bit like camping, and though that was fun over the weekend, I am ready to settle in. Some of that is within our control - like if we can find the box of linens so Quinn, Zac, and I can stop sharing the one towel we could locate...