Ch-ch-ch-change

So much has been happening lately, I haven't had any time to blog. Some quick catch up:

- Quinn is three! His birthday was a week ago. It's a little hard to see my baby growing up, but I can't be sentimental for long while being attacked with hugs and smiles. He just glowed at his party as he saw many people he knew come over. It was his first birthday that he really enjoyed. I don't think he had any idea why people were coming over and giving him gifts, but he had a fantastic time. I am so grateful for his adorable, affectionate, joyous presence in our lives, and appreciate all of the things he has taught me. I love being Quinn's mom.
- We all had a sad, sad last day at his early intervention program, and sad, sad goodbyes with his OT, PT, and ST. As you can see in the picture in the previous post, he started at his new school, and the transition is about as expected. Quinn seems apprehensive when we drop him off and gets fussy towards the end of the (longer) school day. But according to his teacher, he is having some fun there with water and play doh and music, so it seems like he is adjusting.
- Based on a recent assessment, Quinn will most likely qualify for "status 2" from the Regional Center. This means we will still get some continuing support from the Regional Center, like respite and case management, which is a relief.
- Our move was stressful (see below), but it's great to be in our new community. I'm enjoying the beautiful September weather (in the Bay Area, September is a warm, low-fog, no-rain month) and exploring our new neighborhood. Quinn is turning into a real beach baby, and I'm delighted because I have many happy seaside memories from childhood (the Jersey shore). Our new street is also much busier than our old street, which may seem like a drawback, but to Quinn it's a benefit. He is spending a lot of time jumping and gawking at buses and trucks.
- We are having major contractor woes. I really hope we have a usable kitchen, a foundation, and a furnace soon. This has put a damper on the elation I might otherwise feel about our exciting new digs to say the least.

Our First IEP

On Friday, we attended Quinn's first Individualized Education Plan (IEP) meeting with the school district. This was a meeting to discuss Quinn's eligibility for special education services, the transition from early intervention to special education, and the specific goals and services provided to meet those goals. Quinn is not turning three until September, but our school district wanted to have the initial meeting now, before folks leave for summer vacations. I'm a plan-ahead type of person, so that worked well for me.

Years ago I attended IEPs as a support person for others in a professional capacity, and so I know they can be contentious meetings. As we told friends and professionals about our upcoming IEP, they advised us to make sure we knew our rights and be prepared to advocate.

I'm happy to report that the meeting went very well and was entirely drama free. What a relief! And they offered to give Quinn everything we'd want him to have (except PT, which they admitted they should have evaluated for, and will be evaluating for asap). 

There were, however, a few odd/sad moments.

First, the odd moment. At the very beginning of the meeting, when they asked the school psychologist to report on Quinn's eligibility for services, she seemed tentative as she said, "Quinn has significant global developmental delays which do qualify him for services [pause] which is consistent with [pause] a diagnosis of [pause] mental retardation." Then everyone in the room looked at Zac and me, seemingly wondering, "Are they gonna cry?" So I just said, "Yeah...it's not a surprise." And the meeting continued.

Then a couple of sad moments. The first goal they wrote for Quinn, which he is to accomplish over the next year, is to make a chain consisting of X number (can't remember) of large beads on a thick rope. Quinn has had big beads and a thick rope in his toy collection for about a year (thanks, Grandpa Bill!). He plays with them often, and can sometimes get one bead on. His therapists also use beads like this regularly with him. The sad part is that not too long ago, we had another couple over, and their son, who is several months younger than Quinn, made a long necklace with the same beads in about 15 minutes, after his parents showed him just once how to string the beads. They said he did not have beads like this at home and had probably never played with beads. So, the idea that after a year of instruction Quinn would be able to make a bead necklace successfully on 75% of all trials was a little depressing.

Also, though there were goals related to speech, none of them actually stated that Quinn would, in fact, speak. Again, this is over the next year. The goals were about making pre-speech sounds, improving imitation skills, drinking from a straw (important for mouth control), etc. But no actual talking appears to be expected.  I do think Quinn will be talking more in the next year. As noted before in this blog, he does say a few things, (like "moh" for more, and recently animal noises, and he is signing several words now, too). But it's just kinda sad that he's not so far along that it didn't seem appropriate to have a goal stating that he'll speak X number of words over the next year.

Depression

This is not a post about the economy.

Being depressed doesn't mean I can't feel pleasure. I seem to be able to feel pleasure and enjoy the things I've always enjoyed. It's just that pleasure has no afterglow: once the positive experience is over, the funk slams down like anvil. ("Funk slams down" sounds like a groovy '70's tune. Trust me: it's not. The only 70's music I'm grooving on right now is Pink Floyd's "The Wall", which cannot be a positive indicator of mental health. Not entirely true: Keith Jarret's solo concerts are also a great comfort and solace.)

Anyway, remedies pharmacological (SSRIs) and logistical (get a nanny so I don't have to deal with him as much) are under consideration.

[end iPhone composed portion of post.]

I didn't realize that being told by my therapist that I was showing signs of depression would have such a big impact on me. It certainly didn't come a surprise: anyone who's read this blog or followed my Facebook updates may be wondering why it's taken me so long to put the obvious label on it. And any of the stressors I've been going through (unemployment, child permanently mentally retarded, purchasing and renovating a home) are on their own enough to drive someone into mental illness. It's not like things suddenly got worse last Thursday when I talked to my therapist. But I certainly feel worse. I feel not like myself. I don't know if its the impact of being told I'm showing signs (albeit mild ones) of a bonna-fide DSM mental illness that is making me feel like crap, or that being told I'm showing symptoms of depression has given me permission to feel as shitty as I've wanted to feel all along.

The thought of spending time with my son makes my chest tighten.

So, what exactly have I been experiencing?

• Pleasureable experiences don't leave any lasting impression on my mood
• I'm easily panicked and overwhelmed by seemingly small tasks that trigger anxiety or insecurity (this has been a problem for me for a long time, but has gotten worse recently).
  
• I find I need my pleasures in a very visceral way, the way I imagine a drug user might need them. I need them to ward off other things.
• I'm very moody and irritable. I'm not used to feelings of rage and helplessness on such a frequent basis.
• Difficulty understanding what my wife says: I'm saying "what?" and "huh?" a lot. It might be an actual hearing problem. But more likely it's just because I'm escaping to alternate imaginary worlds as much as possible in an effort to get some peace, control, and solace. Or maybe it's because I don't particularly want to hear what she's saying, for fear it will be some request involving Quinn or otherwise disturbing me.
  

Of course, a lot of this may simply be sleep deprivation: Quinn has woken up at 3:30 am every night for the past 3 nights or so.

My therapist tells me that anecdotally, about 75% of couples raising a special needs child have one of the parents go into depression some time in the first three years. She also said that it's usually the woman. But I think Sarah is dispositionally unsuited for the role of depressive. Which is not to say that all this isn't incredibly hard for her.

Let's see if I can get some sleep...

UPDATE: No.

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 tentacles of obligation

• Work stuff, which I should be doing now
• Insurance stuff/Medical bill stuff: where to even begin?
• Quinn appointment stuff
• Dust Storm stuff: logistics
• Dust Storm stuff: publicity
• Dust Storm stuff: get the show back on its feet
• Thank you notes from holidays
• Catch up on sleep
• Deposit a check
• Valentine's Day stuff
• Clean up holiday decorations
• Bunch o' stuff from to-do lists scattered around my desks
• Oil change for my car
• laundry stuff (always)
• Update Internal Monologue to the new templates
• Return The Tudors season 2 disc 1 to the video store (too impatient for the NetFlix!)
• Suff that should be fun but can feel like an obligation anyway (D&D campaign 1, campaign 2, campaign 3, getting my new GPS to work, setting up my laptop as my main computer)

And of course the usual day-to-day, some of which got on that list and some of which did not.

Somehow the balance is out of wack and my time feels like walls are closing in on it all the time. Just recently evening has seemed to become incredibly short. The time between when obligations are filled (or just pushed aside) and when Quinn's schedule demands I go to sleep seems to have collapsed into a barely over an hour strip of time spent in a sleep-deprived daze avoiding things I "ought" to be doing.

Being a father really blows sometimes. I love my family, but it is a snake pit of obligations and duties that are incessant and unfulfilling. And I didn't feel that way before Quinn. I used to love being at home with Sarah. We would cheer everytime we came back home from somewhere, even if it was a vacation, because home was so wonderful, so safe, such a place of renewal and rejuvenation and comfort. No longer. I used to never understand why people avoided their homes by spending so much time at the office. But god, this place, with all its dysfunction, is so much quieter and safer and attuned to my needs.

Everyone who has raised children deserves a fucking medal or three. I feel like race car that's been pressed into service as a dung hauler. I feel like I should go around wearing a sign that reads "NOT OPTIMIZED FOR THE CARE OF OTHERS". But who would read it or be able to heed it? Sarah's as busy as I am, so I can't fairly ask her to do more. And Quinn doesn't give a rat's ass what I'm optimized for or how much sleep I need. I've never had to be around someone so needy for so long. I've always been able to get the hell out of miserable situations before, to close the door to my room and tell the world to go fuck off. Oh, for the ability to do that now!

For an introvert, there is nothing more scary than another person whom you can't get away from, who can take away any quiet moment, interrupt your sleep, demand your attention, and is 100% designed by nature to insist on his own needs being met and to be utterly oblivious to yours. And the kicker is, because of Quinn's Fragile X, I don't know when the fuck it will end, if ever. I suppose we can move him to a group home or something at some point. Or maybe we should move me to a group home.

I used to fantasize about affairs with attractive women who were extremely eager to cater to my sexual proclivities. Now I fantasize about having an affair with a woman who travels extensively and lets me use her very quiet, empty apartment to curl up with a good book and a cup of tea and then sleep uninterrupted for nine and a half hours.

Maybe drugs are the solution: the purpose of pain is to let you know that you should get out of the pain-causing circumstance. But if one cannot do that without shirking one's moral obligations to one's family, doesn't it make sense to use pharmaceuticals to enhance one's mood? A pain signal that has to be ignored is really just distracting noise, and should be eliminated, no?

Or maybe there are other things in my life that are going to have to give way. Work? Play? The energy it takes to pretend I give a fuck about other people? What lamb is next to have its throat slit on the gore-stained altar that is "caring for a special needs child?" The knife is out, the god wants another sacrifice, and his wrath is terrible to behold.

I better get back to work, I have to leave by 3:30 to pick him up from school.

Sigh.

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.

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."

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.
   

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.

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.
  

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.

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.