Because I Said So

Barkeep! Two Fingers of Miralax, Please

Henry is at summer camp this week. And I mean sleep-over summer camp. Yes, it's a big step for him and for us. There have been very few nights when he has been separated from both of us: last year when Jon took me on a lovely, romantic night to a hotel in downtown Minneapolis, and once five years ago when we went to Italy for our 10th annivesary, and Henry stayed with family.

You know -- for an autistic kid, Henry is really pretty flexible. He doesn't mind changes in the routine as long as you tell him about it in advance. He likes to do new things, especially if they are outdoor things or involve food of almost any kind. He also really likes people. I hope (I really hope) he likes camp.

My dad used to go to a bar that sold beer only, no hard liquor, and "set-ups": a glass of 7-up or tonic water or what-have-you. And the regulars had their bottles of liquor, labeled with their names, on a shelf above the bar. I was reminded of this at the camp yesterday while standing in the medical check-in line, and noticing that each parent had a large bottle of Miralax in tow for his or her kid. I pictured all of these bottles of Miralax on a shelf above the nurse's desk, and each kid coming forth with his juice, or pop, or milk -- the nurse settin' em' up so they could knock 'em back down.

I took Frieda on a walk downtown (Excelsior) with me today. We got a sandwich and a cookie at the local bakery, waded in the lake, played on the playground, then headed home. It was hot and we were both tired (we'd been up since  4AM when Frieda awoke from a bad dream and wouldn't go back to sleep), and I had to cajole her to keep going all the way back. By the time we got home, we were both pretty well fed up with one another.

It was a good reminder that parenting can be very trying with "typical" kids, too. Yesterday, my neighbor (a mom to four kids under the age of 10) said she needs a break -- just wants to go out to eat , then watch some "adult" (not adult-adult, but grown-up) movies and then go to sleep. Amen, sister. Hell to the yeah.

Halloween 2009

Yesterday a woman I work with at my new part-time job mentioned that her son has autism. "Yeah?" I said, "Mine, too! Fist bump!"

I feel like we parents of autistic kids should have a handshake or signal or some kind of special greeting to express our solidarity. Whenever I meet POAK in real life (vs. in virtual words, i.e. the web) I feel a kinship -- despite our differences in the vaccine question, therapies, or any other controversial issue. In real life we almost always talk about our kids first and our ideology later, and this seems sound. It gives us a chance to know and connect with each other as we really are, and not as we imagine each other to be when we're pounding out some screed on a discussion board.

From the pics you know that we took the kids out for trick-or-treating. We have a close-knit neighborhood but we went to only three houses. Henry struggled with the concept of staying in the doorway and not going into the house. This was especially difficult at the house where he used to go for daycare -- he wanted to bolt inside and run around and he got upset when we said no. Still, he did a good job overall and of course enjoyed the candy, especially the Skittles.

Frieda enjoyed being out and about, although she's still too little for candy or for getting into the whole Halloween thing. Maybe next year...

We still have seven pounds of leftover candy. So c'mon over and get some!

The Autism "Community"

I'm done.

Done, done, DONE with reading autism blogs, Facebook groups, discussion boards, etc. etc. Anything where the point of the dialog (sic) is to prove why "we" love our kids more than "you" do. The whole thing is a lot more complex than this, but generally and roughly:

Group A believes that autism was caused by vaccines, that their children are damaged and that government and big pharma are responsible. They generally follow alternative medicine/biomedical protocols, say they will do "anything" to help their kids (including potentially dangerous interventions) and this means they love their kids, are more devoted to their kids, than Group B.

Group B is the group that doesn't believe in the vaccine theory, but believes autism is caused by a combination of genetics and some kind of environmental trigger (needle-in-a-haystack here). They are often called the "Neurodiversity Movement" (ND). They believe that their kids are not "damaged", and that they shouldn't be spoken about in disrespectful, angry terminology such as Group A uses. They believe autism is a lifelong condition that there is no cure for, hence the "snake-oil" treatments of Group A are nonstarters. They believe they love their kids more because they accept them for who they are without trying to "cure" them, and that they don't waste time being bitter, disappointed, etc. because they are "too busy loving." (That last is an actual quote.)

Here's me: though I do fall into the ND camp regarding the causes/root of autism, I am heartily sick of the holier-than-thou attitude that lately has been springing up on boards and blogs around the Web. Even bloggers that I usually admire, find informative, humane and funny sometimes stumble (in my opinion) and start slamming the parents in Group A and tossing about the ol' "If you really loved your child you'd be more like us" thing. Yeah, Group A does it, too -- but they're not my people so it bothers me less.

And here's each and every social/movement group:
1. They all have an agenda
2. They're filled with well-meaning people
3. They get swept up in political bickering and infighting and uncivil behavior
4. They're prone to using hyperbole OR minimization to further their agenda/viewpoint/side
5. They each have their own magazine

Regarding #4: here's how I see it working.

Group A -- the Vaccine Group -- often focuses on the most difficult aspects of raising children on the spectrum: the toileting issues, the tantrums, the occasional violence, etc. Remember: they believe that Big Pharma caused this, so showcasing the results of that serves their purpose. In short: bring on the negative.

It's a distortion.

Group B -- the NDs -- sometimes downplays the worst aspects of raising children on the spectrum, saying it's not that bad and even if it IS bad, you shouldn't talk about it in public -- if you do feel angry/sad/disappointed you should suck it up or see a therapist (who will tell you these feelings are normal, but I digress).

Sometimes I get the feeling that the parents in this group who have "higher-functioning" children are especially cold toward parents who have "lower-functioning" kids. They don't want to hear about the bad shit. The whole "I've never been upset -- I was too busy loving" thing is a clear example of this. There's something of the Pollyanna in this. It's not just that we shouldn't complain about our kids in public (a sentiment I agree with up to a point) -- it's that there's something wrong with parents who grieve over their child's autism.

And here's where it bothers me personally: 90% of the time, I'm fine with Henry's autism. Hey -- it is what it is. I love him as he is. But 10% of the time, I STILL struggle with it -- because I am scared of the future, and worried that he will never learn to communicate, and that life for him will be really, really hard.

And I still have days where I feel sorry for myself. When I feel weighed down with responsibility, when I wish parenting were easier. (I'm sure I'd have the same feelings if I had two "typical" kids.)

And I have days where I feel a bittersweetness as I watch Frieda learn to walk and talk (she's talking!) -- and I know that someday soon she will speed past Henry, developmentally. And I feel sad, sad, sad.

And I don't feel like Group B would have much sympathy for this -- not from what I've seen lately. Sure, they'll be all "Why can't we all get along?" and "We all love our kids" and they'll hold out an olive branch of sorts to Group A, but when it comes right down to it, the rigors of their moral philosophy are a bit, well, too rigorous for me.

Plus, I think they lie.

I think at least some of them feel sadness and disappointment more often than they admit. And let me make an important distinction: when I say "disappointment", I never mean disappointed in Henry. I mean disappointed FOR him -- that he will never experience some of the things a typical kid does, and that things that are easy for a typical kid will never be easy for him.  An inability to communicate (not just talk -- communicate) is a huge handicap. Yes, it's a handicap! And I say that not because it makes life difficult for me, but because it leads to all kinds of misery for Henry.

Example: this summer he has been having hysterical crying jags. One week, they were near constant. He cried at home. He cried at school. He was inconsolable, and we tried everything. Finally I brought him to the doctor. Three people held him down so we could get a temperature. (You can imagine how distressing this was for him. And he was already crying.) He couldn't say what hurt, if anything; what was bothering him; why he was sad. Nothing. Not a clue. Feeling that kind of despair -- and not be able to make others understand it -- must be a kind of hell. Being helpless in the face of it is.

Parenting a child with autism brings, in my experience, an admixture of emotions: joy, sadness, despair, depression, optimism, bravery, weakness. It's all in there. It's a complicated stew. And lately I've been reading too many bloggers in Group B who don't recognize that, or don't believe that, or would -- in short -- have no sympathy for anyone who doesn't express only pride, joy, and love where their children are concerned.

THAT'S a distortion.

No one who parents any child at all can possibly say, with all honesty, "I'm never upset -- I'm too busy loving."

Are those really mutually exclusive? I can't be sad and loving, scared and loving, anxious and loving, yes even angry and loving?

To some of the Group B'ers, apparently not.

So I'm done with 'em: Group A, whose conclusions re. vaccines and conspiracy theories I can't agree with, and Group B, who lives on some rarefied moral plane I can't aspire to. It's not human up there; it's made for the gods.

And it's far too cold.

What's Going On

Here's Henry in his do-rag, required apparel for his "walking EEG" -- a 24-hour test he had this week to see if he is experiencing seizure activity. The 20+ wires on his head lead to a thingie in a stuffed-animal backpack that gathers the data -- literally, the monkey on his back.

Applying these wires was a difficult process. I held Henry and fed him Skittle after Skittle as a distraction while the technician did the best he could. When Henry cried out and tried to pull away, the technician made a little "Sssst!" noise and jerked back, as though he thought Henry would bite him. Who knows? Maybe the guy has been bit by patients before. But Henry is resistant -- not combative -- and we were able to proceed.

Yesterday we went back to the clinic and did the process in reverse. I had Henry wear Monday's shirts overnight and into Tuesday, so that removing them wouldn't  disturb the wires. I briefly considered cutting the shirts off with a pair of scissors to I could dress him in clean clothes, then decided I wanted to spare the shirts. Then I left them in the shampoo room at the clinic after the wires were removed. Pllllp.

The results came in this morning: all appears normal. Next round: some blood draws for genetic and other testing.

Why the hoopla? Henry has, unfortunately, had a regression in many of his skills in the last few months, and we're trying to figure out if there's something else going on besides "just" the autism. Maybe this a wild goose chase; maybe we'll find something. It's difficult, worrying, and a pain in the ass.

Interesting side-note: when Henry had the do-rag and bandage things wrapped around his head, he was noticeably quite and attentive. Usually he runs around the house, screaming. But Monday: hardly a peep. It wasn't exhaustion (though he was exhausted, as you can see in the pics) because he tends to get more wound up when he's tired.

Do we need to get him a pressure cap of some kind? It's a thought.

Click here to read an interesting article by Temple Grandin about how soothing deep pressure can be.

I Think That I Shall Never See, As Frustrating A Number as 23

Last week we had our annual meeting with Henry's public school team. We got a progress report, updated his IEP, and talked about plans for next year. There were no big surprises, but his special ed teacher said something about Henry's verbal skills being at a 23-month old level.

The next day, I was going through some papers in my office and I found a speech evaluation of Henry from about 2.5 years ago.

And there it was: 23 months.

In two and a half years he has made no noticeable gains in his verbal skills.

He has made great gains in social skills, in attention span, and in receptive language (receptive language being how much he understands). All good; all things for which I am grateful.

But GAH! I am still discouraged and -- as my niece would say -- "frus-ter-ated" at that darned 23. He did, we believe, make some gains in the last year but this fall has seen a backslide, possibly because of all the new things in his life: new baby sister, new school, new teachers/team, new schedule. That's a lotta change. Still, 23.

Damn.

Damn.

Damn.

Thus I find myself once again visiting the autism blogs, boards, articles, parent sites, etc. trying to find some answers -- trying to find someone else who is going through or has gone through this. But what am I looking for? Do I want to hear, "Oh, yes, our son wasn't talking at age 6 but now he's 12 and he's just been admitted to Harvard Medical School!" Or even, "Our son wasn't talking at age 6, but now he's 8 and his language skills have progressed nicely!" I don't even know if reading anything like that would help at this point, because we have spent the last few years hearing "reassuring" statements of one kind or another, e.g.

"Once he has the ear tubes in, and his ear infections clear up, he'll be able to hear and his language will just TAKE OFF!" (December 2004)

"I bet he'll be talking well in a year!" (2005)

"I bet he'll be talking well in a year!" (2006)

"I bet he'll be talking well in a year!" (2007)

(lather, rinse, repeat)

and then the seemingly endless variations of "early intervention is the key...if he has x number of hours of VBA...if he goes to special ed pre-school...if he has more speech services...if he has OT to deal with the sensory issues...if he's mainstreamed..."

If, if, if.

The way I'm starting to think about this whole thing is comparing it to current theories of where autism comes from. You've all heard, no doubt, of the vaccine theory -- that the mercury in childhood vaccines caused brain damage in kids -- a theory to which I do not subscribe. Similarly, there are various other single substances that are thrown out there as being the culprit (aspartame, botox, lipstick [note that many of these circle back to mother blame -- mom's vanity -- dieting! trying to look young! getting all tarted up!]).

The people who toss out these little nuggets seem to be trying to discover the magic bullet, the ONE THING responsible for this very complex disorder, when more likely it was not any ONE thing, but a confluence of genetics and environment. As one analogy has it, "Genetic loads the gun; environment pulls the trigger." (I note that many of the analogies you find circulating in the autism community contain war and/or violent imagery. We're at war! At war with autism!)

The cause is unlikely to be singular; so, too, the "cure." Or even treatment. In Henry's case, the kid is bombarded (there it is again! war!) with treatments, therapies, educational instruction -- how many hours in the last few years? Well...lots. And I do believe these have helped him (but which ones, and in which ways, I couldn't begin to say).

But there seems to be something in Henry that is resistant to these interventions where his spoken language is concerned. If there's a magic bullet, it hasn't found its mark. If there's any one treatment that will make his language "take off", we haven't tried it.

And if -- as I suspect -- there is something particular to Henry's neurology, some kind of neurological switch, that -- when flipped -- will indeed make his language go off like a bottle rocket and light gloriously the sky of his development, and blow that dastardly 23 into smithereens, we haven't found it.

Of course my fear is that there is no switch, or that we'll never find it, and that Henry will remain largely non-verbal. It's still too early to tell, but I find that I am steeling myself for it. There aren't enough hours in the day to add more therapies.

This doesn't mean I'm giving up. I have a few idea of different things to try, things that might help make that connection, but it seems that until Henry's switch is ready to be found, ready to be turned on, all we can do is provide the environment -- loving and secure, encouraging, and chock full of hard work for each of us -- that might make that possible.

Why Holidays are Hard

Holidays are hard. Even ersatz holidays like Halloween are hard. Henry doesn't yet get the concept of Halloween and, really, who can blame him? "Let's see. I get dressed up in crazy clothes, I knock on the neighbor's door, I say something nonsensical, and they give me candy!"

And Henry isn't familiar with any of the superheroes or characters from comics or cartoons or movies. Spiderman is a nonentity. Ditto Wolverine, Sponge Bob, or Hulk. But guess which costumes all the stores carry in Henry's size? Yeah. "Licensed characters." The costumes he might understand -- like animals -- are all for toddlers.

So I will be making him a puppy costume this year. I'm going to the fabric store this afternoon. This is a bit of a stretch for me as I don't sew. I can barely glue. But I'll muddle through it.

The way to get through these things, I think, is for me to remember to ramp down my expectations. If Henry doesn't want to wear the dog ears I make, so be it. If he doesn't want to trick-or-treat Friday evening, that will be fine. (The HC takes the kids out in the afternoon, and last year he was done with Halloween by 4PM.) If he doesn't want to carve pumpkins, or watch us carve pumpkins, if he'd rather watch a video or eat a snack or play with some string, that's what he'll do.

The expectations of how children should behave (e.g. that they should be really excited about dressing up for Halloween) seem strongest at holiday times. And the gap between Henry and other five-year old, plastic-sword-toting, cape-wearing boys seems wider.

And I am already anticipating the Christmas season when strangers and semi-strangers will bend down and practically shout into Henry's face, "What do you want Santa to bring you?" And Henry will be thinking "Who is this Santa person to whom they refer?" or maybe he'll be thinking "I want some Chex Mix."

When it all comes down to is that it doesn't matter. In the broad scheme of things, it doesn't matter if Henry "gets" Halloween, or Santa, or Valentine's Day.

And perhaps this is once instance where parents of typical kids could envy us: we can walk into a Target, even days before Christmas, and Henry can see all the toys and lights and whatnot, and he doesn't run around screaming that he wants this toy or that, he doesn't beg for bigger and more expensive things, he doesn't get overloaded by the concept of "want" because he doesn't quite understand that it exists. He has, in his own quirky way, opted out of consumer culture.

Yesterday in kindergarten he was able (after a difficult two days of near-constant stimming and screaming) to sit down at the table and work on an art project for twenty minutes. Twenty minutes! That is a huge accomplishment.

And definitely something worth celebrating.

Who's Who?

I received an email the other day that said I'd been nominated to be in "Who's Who" where I'd join some of the "other [heh] most accomplished women in America." Can I have their contact info? Maybe they can help me with the laundry.

But seriously, folks, things are going swell around here. Last week was the first week of school, and it went off without a hitch. No, it didn't. In fact, it took four days to get Henry's bus schedule straightened out. But he is now arriving home at the time arranged, sometimes wearing both shoes and jacket.

I like his new teachers -- both H., who is the special ed teacher, and J., the kindergarten teacher. I met with J. last week, and she volunteered to make her classroom "string free" for Henry's sake. Yes, he's still deep into string, ribbon, long leaves, and -- in a pinch -- coiled up snakes of toilet paper (which drive me nuts).

I don't know what sensory need the string fulfills for Henry, but it sure does something. But we all have our "sensory things." This is something I realize now, that my dislike of crowds, cartoons (too much visual noise/too bright), and lima beans (ugh!) are reactions against certain types of stimuli or texture or legumes.

And I know from my discussions with all of Henry's teachers and therapists that this is more widely recognized than it was when I was a kid. The boy in my class who constantly fidgeted or moved about was simply told to just be still or sit on his hands. And now it's much more likely that this same kid might be allowed to have a little toy to play with or a pebble to rub or he might even be allowed to chew a piece of gum. In this way, his sensory needs might be (discreetly) satisfied enough for him to participate in class, and he won't be harangued by the teacher or made to feel like the "bad kid" who doesn't fit in.

I'm sure there are people out there who would view this as being too permissive with children, too lax, like a certain "radio personality" who recently claimed that 99% of autistic kids are just regular kids whose parents don't know how to discpline them. Their parents just need to tell them to knock it off! I am deeply saddened that I didn't hear that three years ago when Henry's issues were becoming clear to us. To think that I could have put an end to it right then. Just like that! How truly frustrating.

I'm not going to link to that guy because, dear readers, you can Google the whole pathetic thing on your own to find out who he is. My links are like gold, and I'm not going to line the digital pockets of the aforementioned personality, a personality whose parents were remiss in never telling him what an ass he is.

Hit Me With Your Best Shot

Today we brought Frieda to the doctor for her 8-week check-up. She met all the milestones for her age (e.g. smiling, eye contact). Her height is in the 85th percentile, her weight in the 50th, and her head in the 10th. Translation: she is lean, lanky, and has a little head.

The last caused us a little worry at first, but it turns out that small heads run in Jon's family (his mother has never been able to find hats that fit). Also, Frieda's head is growing at the same rate as the rest of her -- a good thing. At our first visit the doctor said, "It's probably nothing, but we'll keep an eye on it." Those words -- meant to reassure -- caused me some alarm. We heard this same phrase, with some variation, from several people during Henry's baby- and toddlerhood. The "probably nothing" turned out to be autism.

But in this case, it seems that the small head issue IS probably a non-issue. Still, we're keeping an eye on it.

Frieda also had her first round of vaccinations today. Anyone who reads about autism (or who doesn't live under a rock) has heard about the "vaccines-cause-autism" theory. (More aptly, that the mercury in the preservative in the vaccines causes autism.) We do not believe that vaccines had anything to do with Henry's autism. We knew from very early on that he was "different", though we initially ascribed this to temperament and not to any problem. As he grew older, it became apparent that there were, indeed, problems with his development.

But he had no reaction to the vaccines (aside from the typical low-grade fevers and crankiness), they didn't cause a sudden loss of language skills as reported by some parents, and he's never had any "gut" issues. But to believe something intellectually (i.e. no vaccine/autism link) and to be completely, emotionally at ease with this belief are two different things. In other words, we had a frisson of doubt about vaccinating Frieda.

After a fairly lengthy discussion with our pediatrician, we decided to vaccinate Frieda.

I'm sure there are many more of these difficult decisions ahead of us. We know and accept that there is a chance that Frieda, too, will have autism. Our new pediatrician has a son with autism (and a daughter without), and we are glad to have another pair of eyes to watch for any signs of developmental delay. So far, though, her development is already quite different from Henry's. He had, and has, some quite severe fine and gross motor delays, and hasn't met the age-appropriate milestones for these since he was a baby. (On some of his skills, he tests at the 19-month old level. He turned five in May.) And even when he was meeting those goals, he was always at the tail end of the "normal" scale.

But Frieda is already lifting up her head, and doing those baby push-ups, and putting weight on her feet when you hold her up -- all things it took Henry much longer to achieve.  Looking back, I think that those were probably the first signs of his autism. Jon and I were discussing all of this the other night, and decided that if Frieda turns out to be typical, we will be completely at sea -- like being first-time parents all over again.

We seem to have this specialized knowledge that doesn't apply in any other situation. Henry doesn't misbehave, or push boundaries, or talk back (I would be in heaven if he would talk back!). It's not that he's perfect, calm, and a joy at all times. The times when he does act out, it is often obvious to us that he's doing it because he's tired, or over-stimulated, or anxious. Not because he's seeing how far he can push us. It takes a certain amount of knowledge about the rules of behavior in order to break them. And he doesn't have that knowledge. Not yet.

So if Frieda does turn out to be typical, and mouths off (a favorite phrase of my parents), and acts out, and pushes our buttons, and does all those things that cause parents so much frustration, we will be just as raw and fumbling as anyone who hasn't been through that experience before.

We have a lot to look forward to.

Goodbye, Autism Mom

I've thought about deleting my last post -- the "special parents" one -- because part of it comes off as sentimental drivel. But you know, there truly is something about the whole experience that defies any other kind of language. So I'll leave it in.

I am weary of autism. Not of Henry, but of the topic -- of all the reading I've done and continue to do, the blogs I peruse, the research I scour (and there is more and more of this every day). It's fills a huge chunk of my life and my time. It's like a hobby I obsess over. So I'm going to quit for awhile, cut back to the basics (i.e. anything directly applicable to Henry, to stuff that can help him right now) and try to let some other interests and ideas filter back in. You know -- the stuff I used to do, before "all this" happened.

I've resisted making this into an "autism blog" because I have wanted, so much, to keep some balance in my life -- to stay an individual apart from special-needs-mom. I've only succeeded, to the extent that I have,  by a great force of effort -- a conscious choice to write about other things. But in "real life" there's no balance.

Have I been working on my fiction or poetry? No.

Have I been working on my school work? No.

Have I been reading books apart from autism books? Yes, though that sometimes feels like an escape. That's what it's come to mean, when it used to mean intellectual stimulation, creative study (reading as a writer, using those ideas as springboards for my own writing), and just plain fun. Instead it feels like time I'm stealing time and effort from my autism studies -- and I don't want it to be that way anymore.

Balance, people! That's what I'm after.

This also means more of a focus on Henry, as a kid and a person. It's easy for me to get distracted by autism studies, the intellectual "take" on things, and ignore the real-life, here-and-now stuff that should be my focus. There's so much comfort, for me, in filtering everything through my intellect. It's often easier for me to read an autism article or book than it is to sit down with Henry and just play. And that's a shame.

It's freeing to think about making this change. I truly feel that I know what I need to know about autism. I haven't seen or read anything new, anything truly helpful, in a long time. It's just the same stuff, over and over again.

What's truly new are the improvements in Henry's language and communication, the fact that he is occasionally making observations and not just demands (e.g. "My fish sticks are all gone!" versus "I want more fish sticks!", an exchange that happened a couple weeks ago, one that Jon and I were stunned and so happy about. It was like having an actual conversation! Truly a lovely moment).

Another reason this change is necessary is that there is another human being on her way -- another member of the family joining us in a couple months. And I've got to have energy and time for her, too. I can't be only autism mom. I've got to be Mom.

Period.

Special Needs Parents: Are We Special?

I've been thinking about this for awhile now. It was kind of floating around in my mind, a wisp of a thought, until an exchange on a popular baby site bulletin board solidified it.

It was on a "Mom's Over 40" board, and the discussion was about pre-natal testing. One of the posters relayed a story about another woman on a different board, whose pre-natal testing had shown nothing unusual but who gave birth to a baby with Down's Syndrome. The poster relaying the story described this scenario as her "worst nightmare". The couple with the affected child ended up giving her up for adoption. I posted that I thought that the whole story was sad, but that I took offense at describing this as a "nightmare" -- that I had a son with disabilities -- etc. We went back and forth, civilly, for awhile -- and another poster chimed in to say that she had worked with kids with autism, and thought that the parents of these children are "very special" and that not everyone is cut out for it. Hence, the adoption was not a sad thing. Parents who were equipped to handle it were adopting the baby. Happy ending for the most part.

But I don't know. I don't disagree with the adoption per se. But the idea that you have to be "special" to handle parenting a child with disabilities irks me somewhat. I remember when Henry was close to two years old, and his delays and issues were just becoming clear to us -- when the "A word" was first mentioned. I remember the self-doubt I felt, thinking "I'm not cut out to be a special needs parent!" I had some image of an endlessly selfless and giving woman, saintly and beatific -- which didn't feel like me. At all. The idea that I needed to be special, stronger, better in some way, to handle what was before us, contributed to my depression and anxiety. I wonder if this kind of thinking lead to the couple putting their daughter up for adoption: the belief that they couldn't handle it. That they weren't special enough.

But you never know what you can handle until you are, in fact, forced to handle it. In many cases, you haven't a choice. Things happen. Your three-year old is diagnosed with autism. Your father gets cancer. Your husband is injured in an accident. And out of love and care for them, you do what needs to be done. There's nothing that special about it: it's what anyone would do, anyone who's capable of love.

(I'm setting aside any people who -- for psychological reasons or deficits -- can't, in fact, move beyond their own fears, issues, whatever, to do what needs to be done. Those people lie outside the realm of what I'm talking about, and that would be another post.)

But there is something that happens to you, that has happened to me, since Henry's issues became clear. I am much more aware of people with any kind of "handicap" or difference than I was before. This seems completely natural, to me: some things just don't show up on your radar until you are personally affected by it, or work in a field where you see it. Though I've always been a sensitive person, I am more so now. And my feelings have moved beyond mere pity (which does nothing for anyone) to a much stronger stance of advocacy.

I don't do any official advocacy with autism groups and such, though I know people who do. But I have to advocate for Henry all the time, as any other "autism parent" does for their child. You're truly called upon to fight for your child, and the contentiousness of that battle has to do with local school districts and what services they provide (or don't provide), and what your doctors say, and what your health insurance covers, and how your family views your child, and how you deal with the insensitivities and prejudices of people and society in general, and your own feelings of doubt, anxiety, and inadequacy.

The latter is often the biggest struggle for me. I'm not that saintly, selfless woman, the ideal of the "special needs" parent. There are still days when I think about the future and am filled with fear and self-pity, when I feel overwhelmed, when I lie down on the bed and have a good cry. (Yesterday was one of these.) "It's a hard world for little things," as the movie has it, and it's even harder for people who are more vulnerable. Like Henry. There are times when I don't feel strong enough to forge ahead, when I let myself dwell on the difficulties and forget to enjoy the little triumphs. At these times, I don't feel special and I don't feel strong. I feel weak. And the world feels like a hard, hard place.

Another saying has it that pain is weakness leaving the body. Maybe so. Maybe special needs parents don't start out being special, but maybe we become special: stronger than we were before, despite moments or days of doubt and hopelessness. I do rally; I do get out of bed. I do what needs to be done, most of the time.

Does this make me special? Or am I no different from any other parent (including those of "typical" kids) who helps their child with his deficits, and applauds his strengths, and struggles to do what's right, and who feels overwhelmed by the responsibility of it all? Who thinks about running away, if only for a weekend, where no one demands anything of them, where they can have that good cry, or have a drink and eat "adult food", or watch some crappy, escapist television show, and forget -- for a little while -- how god damned hard it can call be?

I don't know if I'm special, but I know that Henry is. He is so beautiful, and so bright, and funny, and vulnerable, and he has called on me to give more than what I ever expected to give. And I do it, imperfectly and haphazardly, and often with a feeling of flying-by-the-seat-of-my-pants. And what I feel is an admixture of doubt, sadness, joy, and hope.

I'm not special for caring for and loving and supporting Henry the way that I do. I just can't help myself.