Wednesday, December 23, 2009

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.

Thursday, December 17, 2009

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.

Saturday, December 12, 2009

"Da Da!"

Quinn unambiguously said "da da" and pointed at me this morning. He was holding one of his favorite books and wanted me to read it. Tonight he said "da da" a few times when he wanted to be carried when we were looking at the Thompson Avenue Christmas lights.

It was an extremely rare moment for me. I felt so proud of Quinn and so loved by him. It made my heart so happy. But there was melancholy too. I thought to myself, "So this is what those other parents are going on about all the time. This is the love and joy that they're always talking about. This is what sustains them when things get hard, as they inevitably do. No wonder they gush so much." I wonder how much easier parenting would be for me if I got those moments more often. I wonder how much more often I would get them if Quinn were more "normal."

When Quinn said "da da", I felt like I could endure endless sleepless nights, nurse him through an infinity of sick days, wipe a thousand runny noses and change a million poopy diapers with a smile on my face. All it took was a little recognition, a little declaration of his understanding that he knows who I am. Why are those words so important? I know he loves me. I see his face light up when I pick him up from school, I see the laughter in his eyes and heart when I play with him. I know he recognizes me. But somehow it isn't the same as when he says it. Why is that so important? I know part of it is that we've waited so long for him to speak, and to see speech finally emerging is like warmth on a bitter winter day. But this is different than "go" or "ah duh" ("all done"), as wonderful as it is to hear those, or see them as signs. It's ME. I'm "Da Da". What he said means me. And knowing my child means me; nothing has moved me the way that knowing has moved me. I suppose it's like the first time you realize that the person you're in love with loves you back, but it's along a different, quieter dimension.

Well, of course I tried, with mixed results, to get him to say it again and again and again. But Quinn is not one for command performances. I'll have to be patient and let "Da Da" come to me as a gift. I love you, Quinn. Da Da loves you.

Sunday, December 6, 2009

The UC Davis MIND Institute

On Thursday we went to the MIND Institute for a second visit. We feel very lucky to live so close to the MIND, as we know folks come from all over the world to go there. Quinn is enrolled in the "baby study" there, a study comparing the visual processing of children with Fragile X or Down Syndrome with typically developing children. Quinn was not too into the movies they show to assess visual processing; he much preferred the Yo Gabba Gabba YouTube Clips they show in-between the study movies to keep kids interested.

While Quinn was watching the movies and completing the Mullen Assessment, I met with other researchers to complete a parent interview (including the Vineland Scales and a genogram). After we'd finished with the research stuff, we met with Dr. Hagerman and her colleagues for a clinical assessment.

We came away with some helpful recommendations/ideas:

- We're going to try a little tiny bit of sertraline with Quinn to see if it helps decrease anxiety and encourage expressive language skills. We were offered this last year and refused, but as Quinn is still not really talking, and they have had some success with sertraline and few side effects, we're willing to give it a try.

- We can wait on moving to the big boy bed

- We can continue to move very very slowly on potty training (Quinn likes his Elmo potty and likes to sit on it and make Elmo talk, and that's about it)

- We are definitely right to be concerned that Quinn's not getting enough/the right kind of speech therapy at school. According to their assessments (which differ somewhat from other assessments Quinn has had), last year his expressive language was at 7 months, and this year it is only at 9 lots of work needed there.

- A few sessions with an in-home behavioral therapist can help us avoid tantrums, which often involve Quinn's biting us and pulling our hair.

One thing we really like about going to the MIND is not just the specific helpful advice, but how everyone there, including the other families in the waiting room, "get it". No one gives us really stupid advice (as we commonly experience out in the world). No one stares or asks silly questions. It's just such a pleasant place to be. We are very grateful for the opportunity to meet with such knowledgeable, friendly people and it gives us hope that we have options for managing some of Quinn's special needs.