Wednesday, December 31, 2008

Happy New Year

Happy New Year to all of our IRL family and friends, who've supported us in the first rocky several months of this journey. We made it through what we believe (hope) is the most challenging part of this experience, and we couldn't have done it without you. We're looking forward to 2009.

We also want to send a shout out to all the other parent bloggers of kids with Fragile X. Your honesty, humor, and wisdom has helped us to adjust to our new reality. Thank you. We hope to meet some of our new bloggy friends in Detroit in 2010 - or perhaps even sooner!

To all, we wish lots of health and happiness in 2009.

Tuesday, December 23, 2008

Our little guy got us a Christmas present!

Awhile ago, I posted that he is making a few signs and saying "mmmoohh". We weren't sure at first, but now there's no mistake, Quinn is talking! He is still saying "Mmmoohh" (more) and yesterday said "Ah Duh" (all done). Woohoo!

Since sign language and speech are emerging, we're ditching the PECS for the time being. We were bad and lazy about using the cards anyway. When our kid is crying for milk, it is hard to crawl around on the floor looking for the slimy milk card he adorned with drool and snot and then threw during the last meal.

This is a wonderful Christmas gift for us. It's been a long time coming for both the signs and the speech. Like many good yuppie parents, we started doing a few signs half-heartedly from the time he was a few months old, and have been doing them (especially "more") pretty intensively for the last 9 months at every opportunity (more tickling, more bubbles, more reading, more singing, more food). It didn't look like it was sticking. I'll admit, I was getting discouraged. But clearly Quinn was just waiting for the right occasion to share his newfound ability!

Saturday, December 20, 2008


Tonight while out at dinner, a woman sitting at the table next to us, who was waiting for a friend, spoke to us throughout our meal. She had clearly had a few drinks, or some rough living, and most likely both. She kept saying that she was envious and admiring of what we have - my husband's and my happy relationship with each other and with our son. She told us she had a son, now grown, and she wished he had grown up with a loving father, and that she had experienced parenting and living with a true partner.

Through her eyes, we were a Normal Rockwell painting come to life - a portrait of the functional family she wished she'd had. I feel like this woman gave us a great gift. We are often very preoccupied with our challenges, but in the big picture, we are very, very lucky.

Tuesday, December 16, 2008

After the diagnosis

You all must've known that after the flurry of light-hearted posts, we'd have to throw in a serious one. We have talked many times about the period right after we got Quinn's Fragile X diagnosis, how we were feeling, and what was or would have been helpful. I wanted to write this post while the feelings were fresh enough to remember, but no longer too difficult to write about. We got Quinn's diagnosis about five months ago. For about a year before the diagnosis, we knew he was delayed in his development, but we didn't know why, and we didn't know that it was a permanent (or perhaps someday, but not today, curable) condition.

We are very grateful to many family members, friends, co-workers, and acquaintances who expressed their love and support for us. Some of them commented, "I don't know what to say/do." At the time, we were so consumed with our feelings, we didn't know how to respond.

Now that we've had a little time to think, we have some ideas, which we hope will be helpful to people grappling with a new diagnosis.

When other sad events happen to a loved one, friends and family may feel awkward or unsure about what to say or do, but there is usually a social script or personal experience to rely on. For example, many people have experienced the loss of a loved one, and we have ways, as a society, of dealing with that, like bereavement leave, rituals, and offers of casseroles. We have no social script for dealing with parents who have just learned of their child's special needs diagnosis, and most people have not personally dealt with something like this themselves and statistically speaking, they probably never will.

So here are some things you can offer - or ask for - in the period right after a child receives a special needs diagnosis:
  1. Time off from work and other social obligations. One of the things that was hardest for us was that we felt expected to carry on with business as usual. This was very difficult. We desperately needed a break, and found it difficult to ask for one.
  2. Babysitting help. As much as we love and adore our little guy, it was hard to process this information on very little sleep while avoiding tragic toddler accidents, changing diapers, reading Dr. Suess, and wiping a constantly runny nose.
  3. Help with household stuff. For the first couple of months, we were so sad and exhausted that just paying our bills, doing laundry, and maintaining our house felt onerous.
  4. Social outings that do not involve children. For the first couple of months, just seeing typically developing children was heartbreaking.
  5. Meals, flowers, cards, emails. All of these little reminders that people care mean so much. We treasured the kind words and deeds of our friends. One night a friend of mine invited me over for dinner, when her husband was working late, after her son had gone to bed (see #3). The dinner was spaghetti with jarred sauce and a green salad. I cried in the car on the way home after seeing her, out of appreciation for her kindness. It was so nice to get to talk with her in a quiet, warm, comforting space, and not have to cook or do dishes.
  6. Culturally appropriate spiritual healing. Since there are no rituals for making the transition to being a parent of a child with special needs, it is helpful to find places, people, books, music, and ceremonies that mark and make sense of the experience. We're not talking about the facts; we are geeks and have read too much about Fragile X, early intervention, medications, etc. Edited to add: We are also not talking about the utterance of religious maxims such as, "This is God's way," which can be unhelpful, insensitive, or culturally inappropriate. This is about processes for dealing with the existential stuff: What does this all mean? What now? We are still looking for more ideas on this one, and welcome any resources others have found helpful. (And yes, we've seen "Welcome to Holland". It's okay, but not really doing the job.)
  7. Shared language. One of the things about this diagnosis, and probably a lot of other special needs conditions, is that in addition to dealing with feelings of sadness, a parent must also become an expert in the child's condition, quickly learning new words, people, and places. The more friends and family know, the easier it is to communicate about our experiences. Even day-to-day conversation can be encumbered when in the course of making plans, we casually say, "Quinn has an OT appointment that afternoon," and then have to pause to explain what an OT is and why Quinn has one. We love it when people know the lingo because it makes not only the "big" conversations less taxing, but the everyday small talk as well.
To help anyone dealing with a new diagnosis who has found this page by googling, we hope that other parents of kids with special needs who read this blog will use the comments section to add your thoughts on what was or would've been helpful to you, or write a post on your blog and link to it here.

Saturday, December 13, 2008

Quinn walked all the way...

...from our house to the El Cerrito Plaza, about one and a half blocks. This has been a goal of ours for a long time.

Friday, December 12, 2008

Happy news alert!

So despite Quinn's having been sick this week and missing three days of school, it's been a great several days:
  1. Except for the couple of days when he was feeling really icky, he's been sleeping through the night for over a week! "Through the night" ends at 5 am (or sometimes 4:45 just for kicks), but it is a heck of a lot better than waking up again and again all night, or listening to two+ hours of crib gymnastics at 2 am. If we time it just right, we can sneak him into our bed at the sound of the first murmur and get an extra half hour of sleep. It's pretty awesome. We are living a shiny new less sleep-deprived life, albeit a life that requires us to be in bed by 10 pm if we are going to get 6-7 hours of shut-eye. Oh please, please let this last. I like being a sane individual.
  2. He makes the "more" sign and even said "Mmmoohh" at least once. We usually see "more" when Zac is singing to Quinn (i.e. more singing). But hopefully soon he will figure out how to get "more" of everything in his little world. He's also made the signs for "open" and "all done", though not as consistently.
  3. He is doing some cute mimicking stuff. For example, after grocery shopping one day, I gave him the empty reusable bag he likes to play with and he started to put things from around the kitchen in it - including play food, so I think he was "shopping".
I've left the shopping bag just where he left it, full of play food, farm animal magnets, and bags of ramen because it fills me with joy just to see it there. It seems like he is waking up to the world. I am relieved and delighted to watch the process unfold.

Tuesday, December 9, 2008

We measure up!

Many thanks to Vicki at Holly Daze for giving us the "measure up" award that's been circulating the blogs lately. People pass it on to others to say that their blog "measures up" - i.e. is good and worth reading!


1. Say one nice thing to a man in your life.

Thank you so much, Zac, for being my hero last night as I prepared for a job interview. You did a number of wonderful things that deserve public commendation: You put the baby to bed, fixed our printer (and that involved leaving the house to get a new cartridge on a cold night!), fed me chocolate, and let me sleep in a bit in the morning. These are just a few examples of the kinds of gifts you give me every day. I love you.

2. List at least six ways that you measure success in your life (or for your blog).

I feel successful when...

1. When I ask myself, "If a bus hit me today, and I were lying in my hospital bed with only an hour left, would I feel regret about anything (big)?" If I can honestly answer that I have no regrets, then I feel successful.
2. When I am giving enough (not necessarily equal) attention to the things that matter most to me: family, work, friends, personal time.
3. When Zac and I seem to strike the right balance between recognizing and managing Quinn's specialness and letting him just be a kid.
4. When I do something at work that I feel truly proud of, because of the effort I put into it and because of the potential for positive impact on the community.
5. When I remember to be grateful for the many, many blessings I have in my life and allow my gratitude to dominate me, rather than what are, in comparison, relatively small complaints.
6. When I remember to give Zac the kinds of gifts he gives me (see above).

3. Assign this award to six other blogs and leave them a comment telling the blogger that you’ve assigned them this award.

Well, this is only five, but that will have to do.

X-Dad: Did X-Dad get this already? I'm not sure, but I think it's okay if he gets it twice. His sense of humor about FX and other parenting challenges is great. (Because you can't just cry all the time.) I still laugh to myself every now and then thinking about the last line of the "Feeling a little pissy" post.

Purses and Poop: This is a blog by a former supervisor and old friend with two beautiful adopted daughters. I like her blog because she blends the day-to-day with the big picture stuff so well, and the topics: parenting, work, health, and general life stuff are always interesting.

Princessa Sianessa's Distraction: A great, well-written blog by one of my oldest friends. Her recipes are wonderful and she has a wry sense of humor I always enjoy.

Llama + Duck = Love: Really fun and interesting blog about family and geeky topics by another IRL friend.

If I Had A Photograph of You: Adorable kids, terrific photographs, and a very sweet approach to life.

Saturday, December 6, 2008

What toddlers will eat

Here's an instructional post on toddler eating preferences. One common suggestion to get toddlers to eat new foods is to make sure they are presented in a fun and aesthetic manner, and to make sure the food is of high quality. This does not always work. In fact, I'd say our success rate is pretty low. Here are three rejected presentations from the lunch Quinn just ate:

1. Very fancy packaged toddler meal with fun star shapes! Yumm! Chicken! And we know you like peas and carrots!


2. OK, how about Ravioli with organic marinara sauce in a fun froggie bowl! Mmmm, Yum! You LOVE red sauce!


3. What if daddy takes the peas and carrots from #1 and makes a cute smiley face! You love cooked carrots (when they're in the cheap "Gerber Graduates" toddler meals). And you eat peas all the time! How cute!


4. OK, what if we just throw some cereal and raisins on your tray?


(The blotch on his hand is a stamp from Tumble & Tea (soon to be SadieDey's Cafe), where we spent the morning.)

I don't think this pickiness has anything to do with Quinn's Fragile X. Toddlers are notoriously finicky about what they eat. We are trying to expand his food repertoire. In fact, the raisins are a recent and most welcome addition in that department. But Quinn does not care how much time or love you put into preparing his food. No credit given for showing your work or for effort. He is a harsh critic whose verdicts cannot be appealed, though you may re-submit at a later time and hope for a different decision.

Now the first three tries described above didn't really take up that much time. But the rejection still stings. And we worry about him getting proper nutrition. On the other hand, it is somewhat fun to have a problem that is common to all toddlers. Most of our problems separate us from other families. This is one that brings us together.

Glitter ball boy

Quinn at Tumble & Tea

Thursday, December 4, 2008

Ear Tubes

Double-posting today with a quick ear tube update. The ear tube procedure yesterday went very well. We arrived at 6:30 am, sat around for a longish while trying to prevent our slightly irritable, fasting child from boarding the elevators or pulling a garbage can onto himself, and finally got called in for surgery prep. They talked to us a lot about the anesthesia and post-surgery guidelines, had us dress Quinn in some nifty hospital pajamas, and then it all began. We stayed with him while they put him out. That was a creepy thing to watch. They restrained ("hugged" in the doctor's words) him, put the mask on his face, he struggled a little, and rapidly fell asleep. This was a creepier anesthesia experience than we had for the MRI, because for that procedure, they gave him an oral sedative and a little flashlight toy to play with. It worked much more slowly, and with the toy, he looked like a teenager at a rave, which added some comic relief to the experience.

Anyway, after he fell asleep, they sent us away. We went down to the lobby to get coffee to go, and a few minutes after we sat down with our coffee in the post-op waiting room, the doctor told us the procedure was done. About ten minutes later our little guy was awake. He was cranky and cuddly. Once they made sure his vitals were all normal, he was discharged, around 8:30 am. At home he insisted on eating great quantities of food even though he was supposed to take it easy to prevent post-anesthesia nausea. By mid-afternoon, it was impossible to get him to "rest" as was recommended in the discharge instructions. He was HAPPY and wanted to play, play, play.

So all went well. It's too soon to say if this has had any effect on his sleep, hearing, number of ear infections, or speech development, but he was full of joy all afternoon yesterday, and all day today. More updates to come after further observation. Thanks for the positive thoughts, everyone!

Me, too.

When one human tells another something, it is pretty common to say, "Me, too," in one form or another. It's just human nature, and most of the time, it can create a sense of connectedness ("I want a big piece of chocolate cake." "Me, too! Let's get one!") or is simply benign ("I like the nice weather." "Me, too.") Though I know people are just trying to be nice, to sympathize, and to relate to our experiences, the "me, too" response is often not the best one. Here are some forms of "me, too" we hear a lot:

- "My kid is a poor sleeper, too."
- "My kid can't talk yet, either."
- "My kid has a short attention span, too."
- "My kid had a tantrum the other day, too."
- "My kid needed ear tubes, too."
- "My kid needed an MRI, too."
- "My kid drools constantly, too."
- "My kid wasn't potty training at that age yet, either."
- "My kid walked late, too."
- "My kid also needs lots of help eating with utensils."
- "My kid also won't drink from a normal cup or straw."

Parents of kids with special needs may experience all of the above and more all on the same day, or even in the same hour, with a low expectation that things are going to get better soon. So in this situation, depending on my mood and how much sleep I've gotten, "Me, too" can sound hilarious, ridiculous, irritating, or out of touch. EDITED TO CLARIFY: This does not apply to all cases of "me, too," - just the ones where the purpose of the "me, too" seems to be to suggest that Quinn is not all that unusual...

If you are a parent of a kid with special needs, then by all means, "Me, too" is very appropriate and will most likely be appreciated. If you are a parent of a kid whose development is roughly on target most of the time, then some more helpful responses are "That sucks" or "Here's a big glass of red wine."