Potty talk

I'm almost too tired to blog this, so I'll keep it short. Besides, this isn't something you'd want too much detail about. Quinn did a tiny (as in, you'd need a magnifying glass) #2 in the potty today. We weren't thinking he was really ready, but he was showing interest, which was fine by us. So it was a complete surprise. But it was definitely intentional, as evidenced by Quinn's giant smile of pride at his accomplishment, even before I offered praise and a chocolate chip. I am SO proud of my little guy.

Maybe it was good we were lazy about lazy eye

So we went to the doctor yesterday to discuss Quinn's sleep problems, and it turns out that the eye drops Quinn was prescribed for lazy eye (which we had begun using with greater frequency over the past 10 days in an effort to be better about treating the lazy eye), are a CNS stimulant for sensitive individuals. People with neurological conditions have greater sensitivity to the stimulant effects. Wow. We will most likely still adjust the sleep medication (on the doctor's orders, we increased clonidine last night and had a great night's sleep), but we are very happy to discover that simply NOT using those drops may improve sleep. This is great, but disturbing news. I think from now on, when anyone other than the MIND Institute or our pediatrician prescribes something, we will run it by our pediatrician first. Too many professionals seem to be unaware of the complexity of treating a kid with FXS. As for the lazy eye treatment, we may have to trick or bribe Quinn into wearing an eye patch. Arrr!

Quinn's new haircut

Obtained at the cost of much screaming and fussing, but we like the results.

Less sleep, more words

The last few nights, Quinn's sleep has been awful: multiple wake-ups between midnight and five am, loud screaming and crying. It's been very hard. His clonidine and melatonin regime, which was working quite well for a few months, seems to have become ineffective. We're calling the doctor toady. Perhaps we need to increase the dosages. We've read some pretty discouraging statistics on Fragile X Syndrome and sleep disorders. They go together at a very high rate.

On the brighter side of things, Quinn is talking a lot! He can say "watch" (as in wristwatch), both spontaneously and on demand. He also said "box" several times this morning while grabbing a cardboard box that was on the kitchen table. We also cut his hair last night and it looks much better.

Onward we go.

Talking!

Here's a list of all the words we've heard Quinn say over the past couple of weeks:

- Nyet! (no)
- Booook
- Bye (sometimes said to people who've just arrived at our house)
- Dada
- Ma (Mama)
- Car
- Muh (more)
- KiKi (Kitty)
- Go!

And lots and lots of speech-like babbling. We are so proud of our little man!

Lazy about lazy eye treatment

So Quinn is developing a lazy eye, aka strabismus, a common problem for kids with Fragile X. We were prescribed some drops to blur the vision in his "good" eye so that he is forced to use the lazy one, and thus hopefully avert lazy eye. But as you can imagine, Quinn has no love for the drops, so we've been bad and lazy about using them. Has anyone else had to use these drops? Did they really work? Perhaps your success story will motivate us to adhere to the treatment a bit better.

A picture is worth a thousand words

Here I am, trying to wrangle Quinn into his stroller as we play tourist at Fisherman's Wharf last month (Dec 2009). Fortunately I am feeling better and better these days and have to wear that expression less frequently.

Fingers Crossed for a Boring 2010

Happy New Year! We are pretty glad to say goodbye to 2009. It wasn't all bad, but there was way too much going on. In the 12 months of 2009:

• Zac got laid off and got depressed
• I left one job and started another
• Quinn changed schools twice (one school closed, he "aged out" of the second school by turning three, and he began school district preschool)
• Quinn transitioned from "early intervention" to "status 2" services through the regional center
• In the regional center and school transitions, we had to changes social workers, occupational therapists, speech therapists, and physical therapists
• We bought a house, remodeled it (with two contractors because we had to fire the first one), and moved into it. We lived with the remodeling for some time, including periods of having no kitchen, no furnace, unreliable electricity, and people and noise in our house for months.

Of course this is an incomplete list. We are so grateful to our friends and family for supporting us through all of this. We know we owe you! Adieu, 2009. May 2010 be totally uneventful!

Perks of having a child (our particular child) with special needs

Because our sense of humor about having a child with special needs keeps us sane:

• He cannot run. He is pretty fast with what one of his teachers has described as "hurried galumping". Still, chasing him down is not too difficult.
• He does not know that a big holiday is coming up, let alone one in which he will receive gifts. There has been no begging or pleading for toys.
• Preschool is free.
• He does not really say "no". (But he is getting close, and occasionally says something more like the Russian "nyet".)
• Our doctor prescribes drugs to help him sleep.
  
• The toys people give us are usually a bit advanced for him, so we get to savor and enjoy them for a loooooong time before he outgrows them.
  
• When I put the crib tent up almost a year ago, some folks told me Quinn would figure out how to escape within a month or so. He's made no escape attempts yet.
• We do not worry that any of our "bad" parenting (letting him watch too many videos, letting him eat sweets, letting him have lots of totally unstructured, "unenriching" time, etc) will prevent him from being a Rhodes Scholar.

Advocacy on the ABLE Act - Exciting Update!

Awhile ago I posted about the Achieving a Better Life Experience Act, which would allow parents of kids with disabilities to create tax-advantaged accounts for their children's medical, housing, and other living expenses. I emailed our Representative, Pete Stark, about this bill (only the first few lines are what I wrote - the rest is from the sample email from the Fragile X Foundation). Here's what I wrote:

...As the parent of a three-year-old with fragile x syndrome, I ask that you support this bill. It will be an enormous help to us as we plan for our child's future. We opened a 529 Education account for him before he was born, but it is unlikely he will ever be able to attend college. He already shows delays of 50% or more in every area of development. In his areas of greatest delay, his age equivalent is just 12 months old. On behalf of the individuals and families impacted by Fragile X living in California, I am writing to ask you to cosponsor the Achieving a Better Life Experience Act (ABLE) of 2009 (S 493/HR 1205) led by Senators Casey (D-PA), Hatch (R-UT), Dodd (D-CT), Kennedy (D-MA), Brownback (R-KS), and Burr (R-NC) and Representatives Crenshaw (R-FL), Meek (D-FL), Kennedy (D-RI), and McMorris Rodgers (R-WA). The ABLE Act will allow individuals with disabilities to create a disability savings accounts or 'ABLE Accounts' that would accrue interest tax-free.

The account could fund a variety of essential expenses for the individual, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation. The legislation prohibits amounts held by, or paid or distributed from any ABLE accounts from being treated as income or assets when determining eligibility for benefits provide by any Federal program. Asset development is one step towards improving economic self-sufficiency, and the legislation's focus on encouraging asset development will greatly incentivize people with disabilities to live more productive lives through earning and saving resources for their future.

If you would like to cosponsor this legislation, please contact [Bryn McDonough (202-224-6324) in Senator Robert Casey's office or Dustin Krasny (202-225-2501) in Representative Ander Crenshaw's office]. Thank you for your consideration of this very important piece of legislation.

Today, I got this response:

Thank you for contacting me about HR 1205, the Achieving a Better Life Experience Act of 2009, which would create a tax-advantaged savings instrument for parents to invest in on behalf of children with disabilities, and prevent these accounts from disqualifying the child for federal entitlement.I do not normally support these kinds of tax-free savings instruments in the tax code. However, in this case, I think that if the tax code provides instruments for parents to save for the well-being and future of a child without a disability through college accounts, there should be a similar opportunity to save for the future of a child with a disability. In addition, I agree that federal programs that are intended to improve the welfare of our most vulnerable must not create a perverse incentive for family members to not save money in the child's name for future care. Upon your suggestion, and the input of other constituents on this matter, I have decided to co-sponsor this legislation.