Three Nights of Sleep!

We have just enjoyed three miraculous nights of sleep. On Thursday night, Quinn's grandma babysat and we went to a hotel after Thanksgiving dinner, literally just to sleep. On Friday night, Quinn gave us a post-Thanksgiving gift and slept through the night for the first time in many, many months. Last night, we took a mini-vacation to Napa while Quinn's grandpa babysat. (If you live locally, we can highly recommend the places where we stayed and dined.)

I feel like a different person now that I've finally had some rest. I honestly cannot remember the last time I felt so good. On sleep, life's challenges seem a lot less daunting. Exhaustion had made me forget myself. I really hope Quinn's ear tube surgery on Wednesday brings us all some much needed relief from our usually scheduled program of exhaustion.

We are so grateful to Quinn's grandparents for giving us this break!

Full Moon

Quinn's favorite book this week is Chicka Chicka Boom Boom. If you are not already familiar with this book, all the lowercase letters of the alphabet climb a coconut tree and then fall down. After the uppercase letters (adults) extract all the little ones from their big fall, the narrator notes that there's a full moon, depicted as a large yellow orb on the page. This morning I asked Quinn, "Where is the moon?" And out came his tiny index finger, pointing to the moon!

We think his receptive vocabulary is increasing rapidly, and that is mightily reassuring. Lately when I say, "Let's go play in the living room," he at least looks in the right direction. When I tell him to bring me a book, he does it. It's wonderful and amazing to see his understanding grow.

The R word

I know it is no longer politically correct to use the term mental retardation, and that disability advocates want us to say intellectual disability instead. But here's the thing. No one knows what that means, and well, with my already having to give a science lesson every time I try to tell someone what's up with my kid, I don't want to also have to give a lesson in politically correct vocabulary. Mental retardation is quick. Everyone understands it.

Case in point. Today, two co-workers were discussing potty chairs (don't ask) and then one co-worker (who doesn't know me well and didn't know about my son) asked me which one my son used. Ummmmm... So in an effort to have a quick conversation and get back to work, I simply said he probably wouldn't be ready to have a potty chair for quite awhile. I could see the wheels in her head turning, like she was doing the math, trying to figure out how old my son was. Then she asked and I said, "He's a little over two." Then more wheels turning. So I volunteered, "He has a disability." Then she said, "But I've seen him walking and he is quite charming!" Ummmmm, okay... So I said, "Oh, he can walk, but he is mentally retarded." And then the light blub went on. She asked for more info and I began the Fragile X Elevator Speech.

I've tried intellectual disability and developmental delay before, and those words tend to elicit irritating puzzlement ("Huh?") or trivialization of the problem ("Oh, my son was a little slow, too, and now he's a rocket scientist!"). But mental retardation works every time. What language do you use?

None of that works for us

When parents are having a difficult time, there are a number of things they tell themselves to help them through ordeals that would otherwise be intolerable:

1. "He'll grow out of it."
2. "It'll get better soon."
3. "It's worth sacrificing so he'll have a better life."
4. "Well, if we want grandkids, this is what we have to do."
5. "Someone did all of this for me, and my child will do all of this for my grandkids."
6. "He'll take care of us when we're older."
7. "All kids are like this."

None of these apply without modification when raising a special needs child:

1. "He'll grow out of it.": Well, perhaps he will, but it may be several years.
   
2. "It'll get better soon.": See above. Several years is not "soon."
   
3. "It's worth sacrificing so he'll have a better life.": Yes it is, but "better life" doesn't mean "smarter, higher-achieving, better off materially, more opportunity than we had". It means maybe he'll be able to live outside our home someday, maybe get some kind of job in a supervised environment, maybe get a treatment that will alleviate his severe cognitive impairments.
   
4. "Well, if we want grandkids, this is what we have to do." Unless treatments for Fragile X progress a great deal (and in time for Quinn to be able to take advantage of them), it is highly unlikely that Quinn will be able to create and maintain a traditional family.
   
5. "Someone did all of this for me, and my child will do all of this for my grandkids." People sacrificed enormously to raise us. But they didn't have to go through the shit we're going through. Twice the work and half the goodies. By "goodies" I mean those developmental milestones whose arrival cheers us and makes us feel that it's all "worth it".
   
6. "He'll take care of us when we're older." Again, without major advances in treatment, this is highly unlikely. Of course, I hope by the time we need elder care, the singularity will have arrived and we'll all be uploaded into a hive-mind god machine.
   
7. "All kids are like this." No, they are not. Watching other children do what seem to be superhuman feats of development or even just reading the blogs of other parents with toddlers makes that abundantly clear. We're in the secret club of parents with special needs kids. And it is difficult to communicate what that's like to other people. Not impossible. But not something easy to do in a lunch conversation with a co-worker, or in an e-mail to an acquaintance. This blog is an attempt to bridge that gap, and to provide some comfort for those of us trapped on this side of it.
   

The time on this post is the subject of it

[I sent this from my iPhone, so please excuse any excessive brevity or
typographical errors.]
--Zachary Drake

Top Ten Reasons Why I Work

This is a topic that I have agonized about since we put Quinn in daycare when he was around 11 months old. Before that time, I was working from home on my dissertation, and felt almost no agony - somehow the balance felt perfect. I worked just a few hours a day, on something I loved, with a very concrete goal, and Quinn didn't demand the same level of supervision and interaction that he does now. And though I noticed his delays, I didn't know that he had Fragile X Syndrome, or even that he had delays in every area of development. However, despite any past or present misgivings, I am confident that working is the right choice for me. This is not in any way an invitation to debate about working out of the home versus in the home (because stay-at-home parents certainly do work!). This is intended as a reminder to myself, when I'm questioning my sanity for doing this, and perhaps it will be helpful for assuaging the anxieties of other working parents.

1. On a good day, I wake up to cuddle and play with my sweet little guy, but then tire of reading The Lorax for the tenth time. I go to work, where no one asks me to read anything by Dr. Suess. Then I get tired of work, and I miss my little guy and even The Lorax. So I pick him up from school, and we have lots of cuddling and giggling and reading and eating and playing. And then I get tired again, and he goes to bed. We wake up the next day and do it all over again. Of course, not all days are good days. But that's another post.
2. I like drinking my coffee when it is still hot.
3. I hope that my work is contributing, at least a little, to a better community.
4. I worked hard to get this degree, and I like using it on a daily basis.
   
5. I like having my own money. I like knowing I could build up a secret stash and jet off to Paris. I have no immediate plans to do so. But it's nice to know I could, though at my current salary it would take several years.
   
6. I like talking to other grown-ups about things having nothing to do with children.
7. I think Quinn benefits enormously from his special school, and there wouldn't be much reason to send him there if my husband and I weren't both working.
   
8. I like going to the bathroom whenever I want without worrying that someone is hanging himself from the blind cords or about to stick his hand in the toilet.
9. I am fairly good at what I do, and it's nice to put in a reasonable amount of time and have a pretty good idea of the outcome. Parenting in general, and parenting a child with special needs in particular, is not like that at all. For example, despite all of our efforts to get Quinn to make the "more" sign, he still can't. At work, effort + time almost always = at least partial success.
   
10. For me, more would not be more. Because I don't see Quinn all day, I really treasure my time with him and have more patience. He is a handful, and I need the break that work gives me.
    

Time

When I was young, I longed to buy computer games and Dungeons & Dragons stuff. These days, I long for the time to play with all the computer games and Dungeons & Dragons stuff I have.

Two Exciting Milestones This Week

1. Quinn brushed a baby doll's hair and gave her a drink of "water"! Previously, baby dolls were treated the same as most other toys. That is, they were seen as tasty to nibble on, and that's about it. He is starting to use other toys more appropriately, too. Like cars and trucks - they actually get pushed around on the floor now. So cool!

2. Quinn walked about 6 blocks down a city street! Previously, most attempts to get him to walk on any sidewalk outside of our house involved some combination of Quinn's sitting down and removing his shoes, crying until we picked him up, and acting like a floppy jelly baby, or alternatively, like a super-tense, head thrown back, red-faced tantrum baby. So walking down Solano Avenue holding hands was such a treat. I got tears in my eyes. I feel my dream of walking to Trader Joe's with him (about two and a half blocks away) will soon become a reality.

Wordle

Thanks to Holly Daze for sharing her wordle and inspiring this one! Click on the image above for a better view. Make your own at http://www.wordle.net

Obama Victory Party in Berkeley, CA

This is not a political blog, but this victory means a lot to me and to our family. May Quinn and all of our children grow up in a better world under Barack Obama's leadership. Yes, we did! Yes, we can!

New dreams

I haven't read this book or even ordered it. But I saw it awhile ago while searching for books about Fragile X and disabilities in general, and the title, You Will Dream New Dreams, stuck with me.

I don't think I realized I had dreams for my child, because I thought of myself as a very enlightened parent who would not pressure my child to be a straight-A student, a doctor, or a lawyer. But then when we got Quinn's diagnosis, and I was so sad, I realized that some of what I was sad about was indeed the loss of my hopes for his future. So I had dreams, hopes, and/or expectations, but just wasn't aware of them.

Anyway, I think I must be on my way to acceptance, at least for now (I imagine I'll be cycling through the stages again, maybe even tomorrow) because while driving the other day, I realized I was beginning to make new dreams for Quinn. Here are a few of them:

1. To have a happy childhood, full of rich, fun experiences and lots of love. To get to be a little boy first, and a client/student/kid with special needs second (or third or fourth).
2. To find the activities and relationships that bring him pleasure and fulfillment. To have many opportunities to do these activities and to participate in these relationships.
3. To reach his full potential, whatever that may be.
4. To be loved, healthy, and safe throughout his life.

Interestingly, a cure is not really part of these dreams. Though I'm certainly open to thinking about a cure, and excited about the possibilities, I have some ambivalence about it (shared by at least one other mom of a kid with fxs), which will likely be the subject of another post. For now, given that there isn't a cure available, I'd rather focus on the dreams that make sense for our little guy just as he is right now.