August Update

Well, it's been quite awhile since we updated our blog. It's also been about two years since we learned that Quinn has Fragile X Syndrome. About a year ago I wrote this post, reflecting on how our first year after the diagnosis had gone. I guess the main difference between this year and last year in terms of our adaptation is that it's softened - more background than foreground.

There are moments when we are acutely aware of Quinn's special needs, but most of the time, we're just doing what most people do. We work, do chores, visit family, go to the zoo, wipe our kid's snotty nose, enjoy family meals, go on road trips, catch movies when we can, do laundry, and do all of the gazillion other activities that make up our lives while trying to remember how precious, awesome, and fleeting all of this is.

Quinn's doing amazingly well. He is already doing things I wasn't sure he'd ever do, especially in those dark days just after the diagnosis. He is talking more. He can name many shapes, including "hard" ones like ovals, rectangles, diamonds, and crescents. He can count from 1 to 10. He can follow simple directions. He can sort of put his shoes on, sometimes, like when the constellations are aligned, though even then usually they are on the wrong feet. He can drink from open cups or from straws. He doesn't use a pacifier anymore. He sleeps in a bed, sometimes, all the way through the night. He gives great hugs. He is still very, very happy. Contagiously so. In short, he is a wonderful little boy.

We continue to be lucky to be surrounded by supportive family, friends, neighbors, service providers, and other wonderful people that make this journey possible.

By the way, the great haircut in the pics was just done today, by a neighbor/daycare provider who's been watching Quinn this week while his usual nanny's been away. She did it just because she likes to cut kids' hair. He hasn't had a cut this good, well, ever. And apparently there were no tears. So much to be grateful for.

You Can Do It!

I said this to Quinn the other day, while asking him to take his own shoes off. After the phrase came out of my mouth, I realized that I rarely tell him, "You can do it," and I felt a little guilty and sad. I am pretty sure that if Quinn were typically developing, I would have started saying this at least once a day a long time ago.

I think Quinn will teach me a lot about how to empower a person with a disability as he develops. He already has many skills, and can do so many things. But I rarely encourage him to be as independent as he could be. Sometimes it's because we are in a hurry, though admittedly, it's probably less often that we are in a true rush, and more often that I am just impatient. I need to take the time, sometimes a very loooong time, to wait for him to do more things for himself.

Many of my friends with typically developing kids have already developed the patience to wait for their kids to dress themselves, feed themselves, get in and out of car seats themselves, etc. But often this is prompted by the kid who says (or screams), "I can do it!" Quinn does not yet do this very often. He is perfectly happy to be taken care of, so we have to take the initiative to encourage him to do more for himself.

"Mental retardation" vs. "intellectually disabled"

I'm not sure I agree with the current push to remove the phrase "mental retardation" from the national vocabulary. Yes, it's come to have negative connotations, but any phrase that means the same thing will get those negative associations, too. "Mentally retarded" is already the result of this process: it's a euphemism for "imbecile", "moron", or "idiot". We need some phrase we can use to describe the phenomenon. When my son is doing something unacceptable in public, and I say, "Pardon me, he's a special needs kid," people don't know what the hell I'm talking about. I suspect "intellectual disability" would lead to the same "huh?" reaction. But when I say, "I'm sorry, he's mentally retarded," it hits with the proper impact. People get it, or at least get something close enough that they know they should apply a different standard of behavior.

I do not like it when people use "retarded" as a generic insult or as a substitute for "fucked up", and will often gently point this out when I hear it. I feel the same way when kids use "gay" as an insult: it doesn't really do any good to come up with a new word for "gay" that isn't used as an insult. What we have to do is show people that it's not wrong to be gay, and that it's hurtful and destructive to use the term as if it is. Similarly, it is not wrong to be mentally retarded, and to use "retard" as an insult is cruel.

If people started using "cancerous" as a pejorative, the solution would not be to rename cancer "abnormal cell replication" in all federal statutes. It would be to socially penalize people who were insensitive enough to turn it into a term of abuse. I guess I feel that way about "mental retardation". It doesn't seem to me that the term is "only used to demean and insult people" as the ARC posting I link to states. But maybe this is a bigger problem outside my own social circle.

One Year After the Diagnosis

It's been about one year since we learned that Quinn has Fragile X Syndrome. It feels like we've lived a lifetime since the day we got that call. I feel proud that we've made it with our sanity (mostly) intact. We both have a few new wrinkles and some battle scars, but we've passed through what might arguably be the most challenging phase of this journey. Quinn's diagnosis has opened up unexpected opportunities. To love, unconditionally, an adorable, happy little person. To see the delight on his face when he uses his hard-earned pointing abilities to ask for things and to show us doggies and trucks. To appreciate the miracle of human development. To meet (in real life and online) strong, smart, funny, wise, patient, inspiring people. To revisit high school genetics and biology lessons. To learn a new vocabulary. To reflect on our values. To experience deep gratitude for the people who have supported us. To join the movement for increased access to resources and opportunities for people with fragile x and other disabilities. To feel strong as a family, as a couple, and as individuals. We are probably not done grieving, but it's good to remember that we're still here, laughing, crying, loving, and being.

Life is good on the bus

Quinn's awesome school is a on a campus with lots of programs for folks with developmental disabilities. Every morning when we drop him off, vans are pulling in full of people going to day activities on the campus. As we've noted on this blog before, one thing Quinn has in common with many boy toddlers his age (we are always very happy to be "normal" - a way to bond with other parents) is his love of transportation vehicles. So when he sees the vans dropping people off, he is VERY excited.

The other day I was dropping him, which I don't usually get to do because I'm often off to work before his school begins at 9. But the other day I had the pleasure of doing the drop off. As soon as we got out of the car, one of these vans pulled up, and Quinn, absolutely delighted, made joyful utterances and started waving. On this particular day, all of the other people on the van, the adults with developmental disabilities, started waving, too.

For a moment, Quinn and these adults were looking very happy as they seemed to take one another in. And in that moment, I almost heard a voice (not really - don't worry no voice-hearing going on here) say, "Don't worry, Mom. Quinn is going to go to a campus like this one someday when he's big, and he will love it! He'll hang out with friends, swim, do art, and learn job skills. And he'll wave at cute little boys."

I have to admit, sometimes when I see the adults with developmental disabilities at this campus, I feel a pang of anxiety or grief, thinking, "Will Quinn be like that when he is grown-up?" And I know he will. I just do.

I still think he will be "like that". But for some reason on that day, I realized that is totally ok. I think he he will have an enriching, fun, happy life. It may not be the life I expected, but I think he will be absolutely fine with it, and I will be happy seeing him happy, riding the van to wherever he may be going.

Grateful and a little depressed

We just received yet another developmental assessment. We've read quite a few in the past year, written by Quinn's many village members. This most recent one is by the wonderful folks at Quinn's amazing new super-intensive early intervention program. This is a pretty thorough report, discussing each area of Quinn's development. And these folks know what they are talking about because they spend hours with Quinn each day. 

Reading about what these folks are working on with Quinn, and how they are doing it (with a combination of TEACHH, PECS, ABA, and Floortime!) gives me an extraordinary appreciation for their work. I've observed Quinn in the classroom there, and the patience, knowledge, commitment, and professionalism these folks exhibit is stunning. So that's what I'm grateful for.

Now for the depressing part. Quinn is really delayed. Assessments are an imperfect measure, and they all differ, and the instruments don't capture all the strengths, and the reliability and validity may be questionable and who cares anyway about the numbers, and yada yada yada. But it's just a downer to read that your 30-month-old has the cognitive development of an 8-month-old.  And even the areas of relative strengths show a 50% delay, so around 15-16-month level. Just not that fun to read, really. None of this is a shock, but well, it always is, a little bit, to see it in black and white, after all the work, all the "more" games and putting blocks away one-at-a-time.

And even though I am blown away with the patience of the folks working with Quinn, that also makes me a bit sad. Because frankly, I just don't have the patience to to exchange a PECS card for a Pepperidge Farm goldfish 30 times at every snack, like they do at his program. (Quinn eats a lot of goldfish - yum!) Even if I were not working, I probably wouldn't do it, which makes me feel a little guilty and inadequate...and grateful that Quinn has people in his life who will do that every day for a few hours.

The conspiracy

There seems to be a conspiracy in the Fragile X care community to keep
parents of Fragile X children from meeting adults with Fragile X. I
haven't met a single one so far. Is it just too soul-crushingly awful
for our tender sensibilities or something? We keep getting this BS
schpiel about how "everyone is different" and "you can't predict what
your child will be like". This is true to an extent, of course, but
I'm convinced that someone somewhere decided that new parents of
Fragile X kids should be kept in the dark about what their children
might turn out like (barring a cure or dramatic improvement in
treatment). Of course, I haven't actually gone and sought out a
Fragile X adult on my own, so maybe I'm part of the conspiracy myself.
I do find myself wondering whenever I see a mentally retarded adult
"does that person have Fragile X?", but I've never actually asked. My
ettiquette script repository does not include an item covering this
circumstance.

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

Update to discipline post

In the comments section to the discipline post, I wrote the following and thought it was important enough to publish as a regular post as it clarifies the original one:

There's no question we want/plan to provide structure and discipline for Quinn. The question is HOW. One of Quinn's therapists once wrote in a report that he requires "literally thousands" of repetitions to learn something. This is true. He does not yet say "mama", and only about a month ago indicated that he knew what "mama" meant by looking in my direction when someone said "Where's mama?" So many discipline techniques require a higher level of cognitive ability and understanding of communication than Quinn yet demonstrates. He is about 2.5, but is cognitively around 1 year old. I don't think many 1-year-olds have chores yet! Even having Quinn help pick up his own blocks requires constant supervision and reminding - i.e. sitting right next to him, putting the block in his hand and saying "put in" and offering praise for EACH block. We've been doing this for many months, and we're still at the one-block-at-a-time stage. I know his abilities will increase, and I see the development every day. But regardless, figuring out effective strategies for teaching him anything, including discipline, is very hard.

Discipline

So tonight Quinn was a little outta control at our dinner out (at 5 PM, eaten quickly, as all dinners out must be), and in the car on the way home, we started wondering if and how we should provide some discipline when we think Quinn is exhibiting behaviors we think he knows are inappropriate (but we don't know for sure what he knows, cause there's that whole talking thing that isn't happening much yet). We're not yellers and certainly not ever hitters. I'd say we're reasoners, but given his cognitive abilities, well, probably talking it out won't work, at least not yet. So we mostly opt for distraction. Tonight I pulled many fun items out of the swiss army diaper bag, and when those were all exhausted, I let him jump (literally, as in standing and jumping) on my lap while I tried to eat with one hand, a skill I perfected in his first year of life when he weighed considerably less and could not stand. Hey, at least he wasn't crying and I did actually eat.

I've read that permissive parenting styles are not associated with good outcomes, but I'm afraid we're pretty permissive with Quinn, since we don't really know what else to do. We can already see we will have to change our ways as he slowly but surely begins to act like an actual toddler. But without good communication, how will we do it? Any books or workshops you can recommend?

Update on work-life balance

I posted a couple of weeks ago that I was starting a new job. It's started, and I absolutely love it. There is a learning curve, and the logistics of childcare, etc are a bit more complex now because of the longer commute and occasional evening hours, but I am so much happier that even though I am exhausted, I don't really mind. This is making me think that some of my prior work-life balance angst was about not loving what I was doing all day; ironically my last job was less pressure, but I felt more stressed.

Even though work is busy, I'm still having fun with my little guy. We go to Petco pretty much every day after work to see the fishies and birds, and I think today he said "aga" which I think meant "again" when I was reading "Goodnight Moon" for the 5,000,000,000th time this afternoon, and he seemed very happy when I responded "Yes, okay, again!" and went for a 5,000,000,001th reading. I love how much Quinn LOVES the things he is into - Goodnight Moon, the pet store, milk. His joy is pretty infectious.

Much happier today

For no particular good reason that I can think of, I'm much happier today than when I wrote that previous post. Indeed, I have every reason to be in an extremely crappy mood. Quinn woke up at 2 am this morning and did not go back to sleep until about 7 am or so. At around 5 am I took him for a drive and got him to sleep, but the transfer back to the crib failed and he woke up again. I managed to sleep a little bit in the morning when he finally slept, but I'm completely sleep deprived. And I had to take him to an ear doctor appointment this morning (it went fine; his left tube is a little encrusted but I got some drops that should take care of it) and then drop him off at school before coming to work.

And the difficult work situation I'm in is still going. But I'm just much happier. Maybe my rant let out a lot of bad energy that needed to get out. Or maybe it was something hormonal. When he woke up at 2 am, I was sleepy and thinking "aw, crap", but it wasn't the crazy feeling of helpless rage that I was having before.

I am thankful, thankful, thankful for my new-found serenity. May it last!

And for the record, I am not now nor have I ever been searching for an actual mistress. Sarah is my one and only :)

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.

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.

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.

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."

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?

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

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.

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.

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.