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.

Quinn with Grandma Cathie

Wrapping paper is more fun than presents

Quinn dives happily into the bag of wrapping paper.

Quinn opens a present

Quinn opens a box of...clothes! Two sure is a fun age. I bet it will be a lot harder to please him next year.

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!

Gratitude

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.

Quinn looks at daddy after being dropped off at school

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.

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.

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.

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!

Rules:

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.

Quinn & Sarah sledding

The city of Martinez creates a short artificial sledding run as a
fundraiser. Here's Sarah & Quinn after a successful run.

Quinn shops for Christmas trees

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!

REJECTED.

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

REJECTED.

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!

REJECTED.

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

MUNCH MUNCH MUNCH!

(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

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."

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.

Happy Halloween from Darth Vader!

More cuteness may be posted tomorrow. This is the best we could get on the way to work/school.

I've linked from Internal Monologue

I've linked to here from my other blog, Internal Monologue (this is a copy of what's posted there):

Quinn has Fragile X

I haven't mentioned this on Internal Monologue yet, but it's time my readers know that my two year old son Quinn has fragile X syndrome, a currently incurable genetic condition that causes mental retardation, developmental delay, and low muscle tone. Much of my readership knows about this already, and we thank you for all your words and deeds of support and encouragement.

Sarah and I have a separate blog about it, Love and Survival with Fragile X. I'll be posting most of the fragile X-related material there, while Internal Monologue will continue to cover the subjects it has in the past. LSFX is a much more personal, emotional space for us, so I'll probably be keeping things separate there except for this post and the link in the sidebar.

Quinn continues to be a wonderful, happy, friendly, cute, and for the most part healthy little guy. We hope he has a community who will support and look out for him. We don't want his fragile X syndrome diagnosis to overwhelm his identity, or ours. But it is an enormous reality in all of our lives, and it's time I shared it with my readers. If you want to take a peek at the joys and sorrows, head on over.

Ugh: Ear infections, negative ear pressure, antibiotics

OK, here's a fun little sample of life with a fragile X child: One of the symptoms of Fragile X is low muscle tone. This has all kinds of implications: delayed motor skills, delayed vocalization (your voice is controlled by muscles, though it's not clear how much of the delay is due to cognitive deficits and how much is due to muscle tone issues), and more ear infections.

Why would low muscle tone cause more ear infections? Well, it turns out that the tube that connects your ear to your nose (so pressure can be equalized) is opened and closed by some very small muscles. Those muscles have the same low tone problem that other muscles do. So that passage isn't opened or closed as well as it ought to be, and that means it's easier for bacteria to get a foothold in there.

And more ear infections means more diarrhea. Why is that? Because the antibiotics prescribed to kill the bacteria that cause the ear infections also kill the ecosystem in the large intestine, causing diarrhea, diaper rash, crying, stress at his school, parental sleeplessness, relationship stress, etc.

Quinn just got back from the audiologist (another 3 hour chunk out of our workdays, this one taken valiantly by my wife), and after two ten-day courses of antibiotics, still has fluid in his ears and negative ear drum pressure. This means he probably needs tubes in is ears (small tubes that put a hole in his eardrum that allow the pressure to equalize and the fluid to drain). This will probably be a big relief to Quinn, because it should lessen his ear annoyance. Indeed, we've heard anecdotal evidence that this can improve sleep issues dramatically. But it means surgery, general anesthesia, a raft of bills, possibly a round of dealing with the insurance company, more missed work, etc.

Oh, and he has to go back to the audiologist in 3 months because they can't do their experiments when he has fluid in his ears. Add another 3 hours of daytime occupation to one of our calendars.

Is all parenting like this?

What's it like?

A friend with a typically-developing child asked me this the other day, and in a way, it's really hard to answer. Since Quinn is our only child, it's difficult to say how raising him would be different if he were a typically-developing kid. We have no basis for comparison. But my observations of other parents and their typically-developing kids suggest that in many ways it is similar but more. More appointments, more restrictions on what you can and cannot do, more stuff to worry about in the present and future, more work. Someone else recently asked me if we were planning on having a second kid (and she was clearly unaware what a minefield that question is for carriers of Fragile X), and I said that among the many reasons I wasn't sure about a second child is that it feels like we already have two. Here are some observations of our friends' typically developing kids that lead me to the more hypothesis.

1. We were at an adult dinner party at a friend's house. My out-of-town friend was there with her 18-month-old and had been staying in the friend/host's house for a couple of days prior to the party. The first thing I observed was that the host has a beautiful apartment, full of many breakable items, including floor-length paper lamps and a giant glass vase next to an un-baby-gated fireplace. Amazingly, even though the 18-month-old had been in the home several days, these items were untouched by the child, as were the many choking-hazard-sized foods on the coffee table. The parents did not spend the party chasing the child around, trying desperately to prevent accidents. The child seemed to have an understanding of what was and was not hers, and restricted her behavior accordingly. This was even more amazing when my friend told me it was way past the kid's bedtime, and the kid had jet lag.

2. I was bringing a meal to a friend who had just had a second baby. Her first baby is a few months older than Quinn. The mother had told me she wasn't sure how long I could visit for because her toddler needed a nap. I was at her home for about a half hour. During that time, the newborn slept in a sling without making a sound. Meanwhile, the toddler crawled up on the couch beside the mother, laid down, and fell asleep, also without making a sound. As I was leaving, the mother asked me if I would mind putting the toddler in her big girl bed, so she wouldn't need to lift the toddler while wearing the newborn. I said I would try, but expressed some trepidation about waking the child accidentally. I put the toddler in her big girl bed. She woke briefly, looked at me (a near stranger), smiled, and closed her eyes. The mother later called to thank me, and mentioned that the toddler kept sleeping for another two hours.

3. We were at a friend's child's second birthday party. Despite the allure of a steep staircase with no baby gate, lots of computer equipment, adult musical instruments, and glass beer bottles sitting on low tables, most of the children in attendance simply played with the toys strewn about the house.

4. We were at a party. Another couple was there with their 9-month-old. When it was time for the baby to sleep, they put her in a portable crib upstairs. We didn't hear a peep. The parents said they felt pretty confident it would be no problem to move the baby from the portable crib, put her in her carseat, and then put her to bed when they got home.

I know not all typically-developing children are as easygoing as the above-mentioned kids, and I know that even the above-mentioned kids have bad days. But these above-mentioned scenarios are about as likely in our house as a snowstorm in San Francisco. Here is how these events were or would have been different with Quinn:

1. For party number one, we hired a babysitter, and boy were we glad. Much cheaper than replacing all the beautiful things in my friend's apartment. And going out past 6 PM is a definite no no under any circumstance, unless we want to deal with a screaming, thrashing, red-faced baby. This has been the case since he was just a few weeks old.

2. Though it's getting better, up until a few weeks ago, taking a nap was a looong process involving up to an hour of crib gymnastics, babbling, and/or crying. We often give up on crib naps altogether and resort to stroller or car naps because Quinn gets so cranky, which of course makes us cranky. And moving Quinn once he's asleep is very risky. Until we started Quinn on melatonin about 1 month ago, this was also the case for night-time sleep as well.

3. I spent the party trying to keep Quinn from hurling himself down the staircase, playing with computer equipment and musical instruments, and spilling beer.

4. See numbers 1 and 2.

The other answer to the question about what it is like is to raise Quinn is that I really have no clue what typical development looks like, other than from parenting books I used to read. I am frequently blown away by the accomplishments of Quinn's peers. Until I see a friend's child do something, I don't know it is common or even possible for a toddler to do it. I have seen kids younger than Quinn sing at least some of the alphabet song, say many words in two or three languages, run, climb tall ladders, tell me they have a wet diaper, and engage in pretend play. Sometimes this makes me sad, but more often it just takes me by surprise.

Good Stuff

Though I'm not terribly religious, I am a big believer in the "everything happens for a reason" hippie/new age-y school of thought. So here are some signs that tell me our experience of having a son with Fragile X syndrome is meant to be:

• I've never been motivated by money, but I am very motivated by achievement, particularly scholarly achievement. It is a large part of what I thought made life meaningful and fulfilling. I feel confident that Quinn will have a very fulfilling and meaningful life, both in his subjective experience and in his impact on others, even though it is unlikely that his greatest achievements will be scholarly. Every day he is turning my worldview upside-down, and I think that is a very good thing.
• I am a social work researcher who had never sat in a public social service waiting room before, had never been a client of a social service agency, had never had to fill out pages and pages of nonsensical social service forms before. Now I have, and that gives me a new perspective in my work. When I practiced social work, I imagined I was sympathetic and compassionate, and though I did my best to be, now I know I had no idea how my clients felt. I hope this will make me a better social work researcher and teacher.
  
• I have already met so many wonderful, knowledgeable, dedicated, strong, wise people - early intervention therapists, teachers, doctors, other parents of kids with special needs - and we are just beginning this journey. My life is richer because of the people I have met through this experience.
• It is sad to let go of the image of the child I thought I was going to have, but also liberating. I enjoy my little guy just as he is, and hope I will continue to do so. Like all parents, I have no other choice than to accept and love my son for who he is, but I think the process of accepting your children for who they really are may be accelerated for parents of children with special needs.
  

PECS

So we're starting a little picture exchange communication system (PECS) with Quinn. I was a hesitant at first, thinking, "But he's gonna talk any day now, so why do we need that?" But it's become clear that: 1) It might be awhile before Quinn speaks; and 2) He has a lot to say, as evidenced by his numerous adorable requests for assistance by putting our hands on stuff. Today, for example, Quinn got Zac to open the car door, buckle Quinn in, and drive around the block - all by putting Zac's hands on what he wanted. (For the drive around the block part, he nudged Zac towards the front seat - Zac had been sitting in the back seat with Quinn - and Zac took that as an indication that Quinn wanted Zac to drive the car.) We wonder, did Quinn want to go just anywhere (like around the block) or did he have a specific destination in mind? We hope that as Quinn's PECS power increases, he'll be able to tell us lots of things. We can't wait to learn more about what he's thinking and wanting.

Some technical notes for others who might be curious about PECS: the pics shown above are just a few of the ones we made. Some of them are pictures we took, and some we found using google image search. We printed the pics on our home printer using picasa's handy "contact sheet" collage function. Then we glued the pics to corrugated cardboard and laminated them using no-heat-needed laminating sheets from Target. Finally, we stuck small pieces of velcro to the finished cards. Yup, it's a PITA. But we hope it will be worth it. We just didn't think Quinn would respond to the standard PECS.

In the spotlight

Today while trying to shop at the Farmer's Market, my son flipped out. He wanted to pick up, squish, and play with all of the expensive organic food. He's really into container play right now, and all those bins are just giant containers to take out and put in. Again and again. He was probably also tired and a bit overwhelmed by the crowd. My refusal to let him grab tomatoes, combined with his fatigue, was a powerful recipe for disaster. A mistake not to be repeated, for sure. He was hard to control, even in the stroller.

While trying to calm him and pay for our food, I got the bitchiest of looks from another woman, not a hint of compassion in it. She said, 'What's wrong with him?" I said, "He wants to grab all the food out of the bins and I won't let him." She continued her rude look and said, "There's something else wrong," implying with her tone of voice that I was a Bad Mother who did not know what her child needed. (And indeed, often I do not know what he needs, since he is non-verbal and does not even point, say, to his tummy or head to tell me that they hurt.) I blurted out, "He's special." She looked at me, like, "Yeah, right." Then I said, "No. Really. Special." This clearly made no impression. Then again, it was a vague communication. But it was the best I could come up with while paying for food, listening to my screaming child, at the end of a long day, while high on cold medicine.

Next time, I'll try to be prepared with one of Fraxa's nifty cards. I don't know why I should care what a stranger thinks, or feel the need to explain. Quinn and I have gotten curious looks before, but never an outright rude and judgmental one, and I'm surprised and saddened by how much it stung. I guess I'll just have to build up a thicker skin and carry around those cards.

Another wake-up

He's been crying for 40 minutes. Take the time of this post and do the math. And this is about the 2nd or 3rd wake-up tonight.

I can't lay in bed when he's crying. It's futile. So it's off to the computer. I guess now I have a place to vent.

This has been very hard for me. I find my emotional reaction to his crying is often not sympathetic, but hostile (especially at night). How dare he interrupt my sleep. He's obviously tired and needs to go to sleep, so why is he just moaning?

Sometimes I feel that something in me got wired wrong. That the neurons that were supposed to active the "love him and cuddle him and take care of him" centers in my brain instead got routed to the anger and resentment networks.

There's probably nothing wrong with my brain. It's probably set up so that the normal range of baby fussiness and inconvenience doesn't produce hostility. The problem is that he falls outside that normal range.

A New Language

PT...OT...ST...SW...CHO...LPCH...PIP...LEAP...RCEB...IFSP...POS...IEP...SELPA...PECS...
proprioceptive...sensory integration...motor planning...CGG Repeat...FMR1...MGlur5...
premutation...full mutation...methylation...FXS...FXTAS...FXPOI...carrier...
mosaicism...respite...weighted vest...chewie tubes...Ps and Qs...orthopedic inserts...crib tent...pronation... expressive...receptive...melatonin... folic acid...carnitine...MRI...eustachian tube dysfunction...negative pressure...karyotype...VABS...Bailey Scales...IDS... Peabody...strabismus...mitral valve prolapse...tongue lateralization...lip closure...macrocephaly...hypotonia...joint laxity...joint compression...vestibular

It Takes A Village

This maxim exists for a reason. It's true for any kid. Raising kids is hard, parents need help, and kids benefit from interacting with lots of loving people. But kids with special needs really do need a village, a fact I am finding both challenging and wonderful.

The main challenge is logistics, as noted in the prior post. Here's a rundown of our family's team, roughly in order of frequency of contact:

- Special needs integrated pre-school including multiple teachers and aides
- Speech therapist
- Occupational therapist
- Physical therapist
- Infant development therapist (who we sadly had our last meeting with today as she's retiring).
- Housecleaners
- Therapist for parents to help us deal with this diagnosis and all the baggage it comes with
- On-call nanny to care for our child when he can't go to the special school due to the common cold he will most likely have all winter
- Babysitter (she has a day job so can't be the on-call nanny)
- General pediatrician
- Developmental pediatrician
- Social worker
- Geneticist
- Fragile X specialist
- Neurologist

(As a fun aside, which will be the subject of another post - lots of these village members will be replaced by new ones when our son turns three because at that point the school district will be in charge of his care. So we'll have a whole new set of people to get to know.)

Logistics aside, this is a blessing. It has been humbling and freeing to be able to say that I really don't know, often, what to do with my son or how to help him. I have to hand my son over to the village. There's no other choice because we can't possibly do this alone. If you are not the parents of a child with special needs, you may think I am suffering from a lack of confidence or need to read more parenting books. Here are a couple of examples of things I couldn't teach my son:

1. To eat. Literally, to bite, chew, swallow. My son would not touch non-pureed food of any kind until we got a feeding therapist to teach him how to eat. We tried everything from organic scrumptious fruit to french fries to cake, and at best he wouldn't touch them, and at worst, if we tried to introduce the offending substance into his mouth, he would cry, gag, and vomit. Our feeding therapist got him to eat within a few months.

2. To play. I really wanted my child to play with this toy. He loved it whenever I pushed the popper around the room, but whenever I handed the stick to him, he just looked at it blankly. After months of popper demonstrations which delighted my son, but did not succeed in teaching him how to play with it, I told the infant development therapist what was happening. She explained that he had a motor planning problem, and could not easily envision his body moving through space the way that most people could. Thus his difficulty in mimicking us. She put his hand on the toy, then put her hand over his (a common technique I now know is called hand-over-hand), and pushed the popper. Within a few minutes, he was smiling and popping the popper on his own.

Something in our society makes parents, especially mothers, feel that they must know how to take care of their child, that they are the expert of the family. It seems accepted that a parent will take pride in this responsibility. Some of our providers are sensitive to this, and will say, "But of course you know what will work for your son," and though I appreciate the comment, I sometimes think, "No, I really don't." And that's okay. I'm very grateful to our village for all their support, patience, and guidance. Even if it is a logistical nightmare.

Love and Survival, Part II

Love: I'm not even sure it makes sense to try to describe how I love my son. I guess it's like the love most parents have for their children, but since I only have one, I have no basis for comparison. Our child is very special. Not just special needs special, but special in the totally pre-euphemistic sense of the word. His smile lights up his face, our faces, and the faces of everyone he's with. He gives great hugs and slobbery kiss-like things. He loves books. His awkwardness and delays are quite charming. He walks like a tiny Frankenstein and sleeps with his butt in the air. He has developed a habit of taking our hands, bringing us across a room if necessary, to ask for things in the only way he can - by putting our hands on what he wants - videos, outside play, blocks. I love being dragged about my home by this little authority figure in a puppy sweater. I love how he smells (usually), how he picks up his sippy cup so earnestly and drinks his milk like he is tasting the sweet nectar of life itself, and how he laughs at many, many things. Like velcro and the swiffer wet jet.

Then there's the love for my husband. My exhausted (see below) sweetheart, who dreams of hiding in a cave for a long, long time to play d&d wows me every day with his tender and funny interactions with our more-than-a-handful child. He gives me frequent backrubs and is patient with me as I bore him with the tedium and stress of our over-scheduled new life (see below).

Survival: We are tired, oh so tired, all the time. Our son doesn't sleep well. Though he makes progress every day in little ways, the milestones are a long time coming. We see everything coming for months, and sometimes years. Unlike many of my friends with typically-developing kids, we never just "wake up" to find that our child is doing a new feat. We are thinking of having a first word party, because already we've been waiting about 1 year longer than most parents do. We might even have a bye-bye party, because he doesn't wave bye-bye either. Though there are benefits to this slower development (we still don't have to run to catch our toddler; he just doesn't move that fast and he has little interest in leaving the stroller when we're out), the downside is that we put in a lot of effort, and our rewards come less often and less dramatically. He has 4 therapy appointments per week, not including any extra appointments, like our upcoming visit to the M.I.N.D. Institute, regional center service review meetings, dentist appointments, regular doctor check-ups and sick visits. The therapies could be an entry unto themselves, but for now let's just say they are wonderful and our therapists are all incredible, dedicated, knowledgeable people BUT...we end up with a lot more on our to-do lists beyond the actual time spent in session. There is homework, and sometimes special supplies are needed. So, we don't just play with our child; we know we should play the right way. Here's what I got in the mail yesterday: a bill from a medical provider related to his care, a form to fill out related to his care, and a letter thanking me for my donation to FRAXA. There's also email and phone calls related to all of the above scheduling, doing, early intervening. I have honestly thought of hiring a personal assistant to help us with the logistics of it all.

No Yale, No Vassar, No grandkids

When it was first suggested that we test our son for Fragile X, my first thought was, "Do you really think he has big ears?" It was a small, silly thought, but it captured my perspective at the time, which was that I just didn't think my kid was that special. But he is.

When I got the call from our geneticist, it was a lot like all the cliche stories you read about something awful happening to someone. Everything stopped. I don't remember what the doctor and I discussed, except for that one fact. I got off the phone as quickly as I could, because I don't like to blubber in front of strangers or bosses or random acquaintances. (But it does happen sometimes, and since getting this diagnosis, it has happened a lot more.) I put on a video for my son, who I think had never seen me cry before. And then I just sat down and cried until my husband came home from work, about 30 minutes later, though it felt like an eternity.

The next few months were kind of a blur. We did what had to be done. We told our families and close friends. We kept going to work. We tried to act okay. We saved our blubbering for our meetings with a therapist who specializes in talking to parents of kids with special needs.

We are slowly, slowly, slowly coming back to something like normal, but this new normal will never be like our old normal. No professional has ever said that our son can't go to Vassar or have kids. But unless a cure is found - and that is a distinct possibility in our son's lifetime - the best case scenario involves some type of supported living situation and supported employment. Occasionally we read articles in which this scenario is painted rather rosily, but come on now. Even if you don't expect Yale or grandkids, no parent of a young child is thinking, "Gee! Someday maybe my kid can have a below-minimum-wage job and live in a group home!"

There are other rotten aspects to this particular diagnosis. Since it's genetic, and I'm a carrier of it with a relatively high repeat number, there's approximately a 50% chance that any future kids will have Fragile X Syndrome, too. And the decision has to be made fast, because I'm at risk for experiencing early menopause. There's also the issue that my father, a carrier too, is at risk of developing a tremor and dementia disorder, and just the general fact that he feels sad about having unknowingly passed this on. All of this in one phone call. Welcome to Fragile X.

Prenatal genetic testing

I didn't do it and I'd make the same decision again, even knowing what I know now. If the doctor had told me, "Well, mom-to-be, you're about to have a two-headed, fire-breathing dragon," I would have said, "Then I guess we'll be adding fire extinguishers to the baby registry."

Who am I to decide what constitutes a worthy life or an excess of parental suffering? And where do we draw the line as a society? What if there were genetic tests to find out if your child would be obese, depressed, unkind, or just totally uninterested in attending your alma mater and reading The New Yorker? What is an acceptable reason to terminate a pregnancy? These "private" decisions have social consequences. And one such decision is the decision not to have a retarded child.

I want to live in a world that's welcoming to people of all kinds, and I felt when I was pregnant, as I do now, that the personal decisions we make help to create our world. It is okay to be different. Really different. Admittedly much harder than I thought it would be, but ultimately okay.

In addition to my ethical concerns about where society draws the line about worthiness of life, I also just didn't want to be in the position to have to make such a decision. So I refused the tests for Fragile X and Down Syndrome and other genetic abnormalities. Maybe a part of my subconscious already knew that my kid was special.

My only regret about not having the testing was that we spent about a year spinning our wheels trying to figure out why our child was so delayed, and it might have been nice to avoid the doctor visits, the insurance co-pays, the missed work, and the anxiety. On the other hand, for the first few months of my son's life, I felt like a "normal" parent for awhile. I wonder if an earlier diagnosis would have interfered with bonding and attachment. We didn't learn of his diagnosis until he was almost two years old, and I'm grateful for the time we had to get to know one another before the label.

I do worry that my child will suffer when he is older because he is different, and that troubles me ethically as well, knowing that perhaps I could have prevented that suffering. But then again, I also would have prevented the joy he brings to our lives, and the joy he clearly experiences as he learns about the world.