My Grandson Broke His Arm

My grandson broke his arm at school yesterday.  It seems, he was running to get a drink from the water fountain, because he was "so thirsty."  He tripped over his feet and fell.  It happens.  Kids fall, they get hurt.  It's no one's fault.  And yet, and yet ...


My grandson has PDD-NOS.  Things are never simple when someone has an autism spectrum diagnosis.  We have been arguing with the school since ... forever ... about his need for additional services.  As we argued that he needed more services, his services were slashed.  He has had no PT since he started elementary school, and his OT services have been reduced from direct services, x amount of time per week to consultation only, y amount of time per month.  We were told, by someone who must have been observing someone else/insane/choose your explanation, that he could move from sitting on the floor to standing without the use of his hands.  It would have been funny if it weren't impacting the boy.


So, after he got hurt, my grandson was unable to get up from the sitting position on the floor that the kids assume during the gym class he was in.  He, apparently, requires the use of both his hands to stand up.  Because it was approaching the end of the year, the weather was hot, and who-knows what other reason, the class had a "bonus" class of gym.  He was not able to participate because of the pain in his arm.  He visited the nurse's office three times, complaining of pain - something this child never does.  He was unable to put his chair up on his desk at the end of the day (the usual end-of-the-day routine).  My daughter was not told about any of this.  At 3:00 she received a call telling her only that her son had been to the nurse's office, impliedly once, after having fallen during gym class.  Another tid-bit, when the boy fell, he did nothing to try to break his fall.  No reflexive trying to catch himself.


Beyond this, and to me, far more disturbing, was his response to the injury.  He didn't cry; he didn't scream.  Breaking a bone, even a minor break, hurts.  Even for a child with a high pain threshold, this is not something one shrugs off, and the fact that he went to the nurse's office three times means it was a big deal to him.  What he said later said it all, for me.  He tried not to cry, even though it hurt - a lot.  He said he screamed silently.


The casual observer, or the uninformed might wonder why.  I, unfortunately, know why.  School has worked very hard with him, over the past couple of years, to not cry at school.  To him, there is no real difference between not crying because you're upset about having trouble opening your water bottle and because you broke your arm.  The rule is "don't cry at school."  He's learned the rule.  He's internalized it.  He's proud of himself for doing so well with it, and he's gotten lots of positive feedback for it.  No one has been able to explain the difference between appropriate upset and inappropriate upset. I'm not sure they've tried.  So they have a star pupil, who doesn't cry when he breaks his arm - he screams silently.


And so do I.

"Pervasive Developmental Delays"

"Pervasive Developmental Delays."  The term alone is enough to strike terror into the heart of any sane parent.  Autism spectrum disorders fall under this category of disorders.  Scary stuff.


My son was not diagnosed with Asperger's until he was eight and a half years old. Eight and a half years old?  How can a child with pervasive developmental delays go unnoticed for that long?  I admit, I tend to ... perseverate.  We, who are NOT new to the spectrum, are old hands at perseveration - our own, or someone else's.  But I can't help it (isn't that the key to perseveration, anyway?) - what do they mean when they say pervasive developmental delays.


I'm a good mother.  I feel guilt in the appropriately large amounts.  How did I not see pervasive developmental delays in my beautiful, wonderful child?  I go over my mental list, again:  he walked at 9 1/2 months - that couldn't be it; he talked before a year of age, and was speaking in 3-4 word sentences at a year and a half - also not it; he mastered the sorting toy (for 18 mo. - 3 y.o.) at 10 mo. - no, not a "sign;" he played competently with legos (yes, legos, not duplos) at age 3 - fine motor skills, check; he taught himself to read before entering kindergarten ... Where were the pervasiveness of these delays that I had so negligently overlooked?


Don't get me wrong.  I know my son has Asperger's, and he definitely has the deficits that go with it.  He also has some amazing strengths.  I just look at people who say "don't you wish you knew earlier" with some measure of confusion.  What, exactly, was I supposed to "know?"  That my boy had difficulty with transitions?  I knew that.  That my son was not terribly interested in his peers?  I knew that, too.  Happily, he had a built-in playmate with his brother, and his brother's friends were very tolerant of the little brother tag-along in many play situations.  It was working.  It was probably better than any "therapeutic" intervention or "inclusion" placement would have been.  He was in a regular education pre-school and elementary school, because he wasn't diagnosed.  Most teachers recognized that he was a bit "quirky," and accommodated him accordingly.  It worked.  Right up until the time that it didn't.


And then he was diagnosed.


And it all made sense.


Except for the name ...


I'm still stuck on the pervasiveness of the developmental delays.  I hate that name.  It sounds so awful.  I look at my now almost-adult boy.  I still adore him (of course).  I know he struggles with some things, but "pervasive developmental delays" sounds like someone who can barely walk and chew gum.  He's gifted and funny and loves to read and loves math and is learning Japanese, and is one of the smartest people I know.  He's not great at social conversation (LOL). 


When people come up with these terms, I wonder whether they ever consider that they will be applying them to actual, other people.  People with feelings, people with families who love them, people who can read the DSM!  Clearly, some of the people who are diagnosed under this category are very severely impaired, and have developmental delays in many areas of their lives, but for those who, like most people with Asperger's, have "delays" in only one or two areas, and areas that may not manifest in the first few years because they don't affect "milestones," the term is misleading - and for folks who tend to be literal, that can be ... problematic.

Mother's Day Too

When my older boy was about two years old, he asked me where his other mother was.  I had to give him the "sad" news that he didn't have another mother.  And no, he didn't have other siblings, either.  Poor boy.

He lived in an ... unusual household.

His sisters both had other mothers and siblings about whom they spoke, and whom they sometimes visited.  It was a bit confusing for a two-year-old who, not surprisingly, figured that this was the norm.  It was, obviously, his norm.

One sister was a "newcomer," although, to a two-year-old, it probably was hardly within his memory that she hadn't always been with us.  A teenager with some "family issues," she lived with us for about two years, and grew up with a happy "ending."  She re-established a healthy connection with her family, and established an independent living situation.  There aren't many of those in the dependency system.  She regularly visited her siblings; less regularly her parents.  She spoke often about all of them.  I think about her often.  I think that she's what foster care is supposed to be about ... but rarely is.

The other sister was my daughter, who came to me as an emergency foster placement, to stay for "two weeks-to-six months" when she was five years old.  She is now married, with a child of her own.  She had siblings who were part of her "case," who she visited regularly for the first years she lived with me - until after her adoption finally came through.  She also visited her biological mother during those years:  supervised visits that were emotionally draining and, as we learned later, not adequately supervised.  Later, the visits were not as regular, but when they happened were more real - the kids met in each other's homes, in their real lives.  Most of them still keep in touch in various ways.  But the mothers who raised them are their mothers.  The mother who birthed them is their "bio mom."

My son has no wish for another mother anymore.  I don't think he did then, either.  He was just trying to figure things out.  He was always very analytical, and in his own careful way, he was trying to assess the situation.  Something wasn't sitting right, and he didn't want any unpleasant surprises later.  

My boy liked to find structure in the world.  When his brother was little, he asked whether we'd be moving.  We had moved when he was two, so he figured we'd move again when his brother was two.  

Being a mother has given me the joy of seeing the world through the eyes, not simply of a child, but of someone who sees the world from a totally different angle - and each of my children has seen the world from a totally different perspective.  What a gift!

Happy Mother's Day

My daughter made me a mother.  

My mother never thought so.  The Mother's Day after my son was born, when I called my mother to wish her a happy Mother's Day, she returned the greeting, saying, "You're a mother, too!"  She sounded so happy for me.

It's always been a complicated, and difficult dance.  "I've been a mother," I responded.  "Yes," she answered, irritably, "but now you're really a mother.  

So the prior four years hadn't been real.

And so it has always been, and continues to be.

A couple of weeks ago, my mother said to me, "Can you believe that your sister is a grandmother? and she's the same age as you?"  Yes, I am a twin.  "Well, I am also a grandmother," I answered, resisting the urge to say I have been for longer.  "Yes, but that's different."

Obviously, there's a back story here.  My daughter is adopted; she was an "older" adopted child.  I never had the opportunity to rock my daughter, as a baby, to sleep, or to nurse her, feed her baby food, see her roll over for the first time, take her first steps, hear her first words.  I also didn't get to prevent her first, second or umpteenth assault at the hands of caretakers who were supposed to love her.  I wasn't there when she was ripped, literally, from the arms of her biological mother, by police officers who were trying to protect her from the abuse she'd already suffered in her young life.

I was there when she screamed every time she saw a police car, or a police officer in uniform.  I was there when she, hesitantly, started to reveal bits and pieces of what had happened to her.

I was there during what was euphemistically called her "rocky" adolescence, when she had to deal with what her early childhood trauma had meant to her, and what it meant to her future ... if she could envision one.  Mostly, she could not.

My daughter and I have been through a lot ... together.  We both know it.  It has made us very close.  We laugh about things that no one should laugh about.  We got through it, so it can now be funny.  She IS my daughter, and I AM her mom.  Neither of us has the slightest doubt about it.

When people talk about a "real" parent, biology has little, if anything to do with it.  

Happy Mother's Day, to all the mothers, and to all the children who made their mothers into mothers!

SAT's and Autism Awareness

Really, I had thought I would post during Autism Awareness Month.  Like many (most?) parents, I have some extremely ambivalent feelings about the entire "autism awareness" thing - we don't really need more awareness, we need more acceptance, more services, more ... blah, blah, blah.


I, on the other hand, have spent much of my "discretionary" time this month trying to deal with getting my son properly set up for next month's (May's) SAT test.  For years, I had been hearing about and dreading the process of obtaining accommodations.  The College Board is tough!  They aren't giving anyone accommodations.  Hyperbole?  Of course.  But still, it is a real concern and we were nervous.  My son has some serious writing issues.  When he has to write more than a few words by hand, well ... he doesn't.  He's had writing accommodations of using a keyboard since fourth grade!  We started working on getting him accommodations for the SAT's a year ago.  The happy shock was when he was approved for the requested use of a computer (for word processing) and extended time, with no appeals necessary!  Wow!  I figured we were home free!


I was an idiot.


First, there was the "simple" matter of signing my guy up for the SAT.  Despite the wording on the online form, that seemed to suggest that one needed only the prior date when the SAT had been taken, or the prior registration number, they wanted both.  Well, he took the SAT four years ago, when he was in 7th grade, as part of the Johns Hopkins Center for Talented Youth program.  Oddly enough, I did not still have his admission ticket from then.  It took a mere 45 minutes worth of questions to ascertain that I wasn't making off with state secrets by establishing myself as my son's mother - who knows what the SAT scores of a 7th grader might reveal?  But that was the easy part.


The College Board is convinced that my son's tiny private school can administer the test.  His school is equally or more convinced that they cannot.  While speaking to the College Board's office of Services for Students with Disabilities, I found representative after representative (there have been numerous lengthy phone calls) who seemed to have no idea what an approved private school, a home school, a sending school, or a receiving school is.  They repeatedly assured me that if I simply contacted the named person from my boy's school, all would be fine.  What they could not comprehend was that the person they named had left the school 15-20 years before.


I tried to explain that the institutional memory of the school, which went back almost ten years, included no administration of the test, and the school could not and would not administer it, whereas my son's home school was perfectly capable of administering the test.  "What do you mean, that is his home school."  Um, no.  


Many, many hours of phone calls and emails later, I thought we had the situation resolved (after detours through apparent but inaccurate conflicts with finals), and we are back to a push-pull between which school is going to be responsible for administering the test.


And this is truly what the problem is with Autism Awareness.  People can be as aware as we want them to be about autism, but if our children/loved ones can't get the services/accommodations they need, are entitled to, have been granted - all the awareness in the world is basically useless.

Oh my, how things have changed!

Recently, I was at an event and the conversation wandered to territory that caused me to say something about my son, and I mentioned that he was autistic. The person I was talking to assumed I meant figuratively.  As we chatted, I said something about the Asperger nature of my son's behavior making it impossible for him to do something, and was met with something like "yeah, everyone is like that."  

Nine years ago (can it really be nine years!!??) when my son was diagnosed, few people knew what Asperger's was, let alone identified as having similar characteristics.  Now it's nouveau cool.  It took several "takes" to clarify that I wasn't being figurative or colloquial in my use of the terms; my son actually has Asperger's, actually couldn't have coped with whatever we were discussing, and has the medical/educational diagnoses (to say nothing of the IEP's, placements, and emotional scars) that back it up.

As April, with Autism Awareness Day and Month being almost upon us, I think about the double-edged sword that "awareness" is.  So many people are "aware" of autism; far fewer have a clue about what autism actually is or means.  They know it is being diagnosed with greater frequency.  They know it is something they never used to hear about.  They don't really know what it is, or what people with autism need in order to become the most productive members of society they can become.  Unfortunately, the providers, who need to know these things, seem to be almost as ill informed as the general public on how to properly support this population.  So we slog on - another April, another month of "awareness," another barrage of vacciners vs. anti-vaxxers.

Some day, this will be ancient history.  And we'll wonder how we could all have been so cruel to each other, and so, so stupid.

Paul Offit meets Stephen Colbert!

In some areas, there was a lot of "buzz" about Paul Offit's appearance, last night, on the Stephen Colbert television show.  There was a Facebook page dedicated to the "event," and a rather heated debate place between anti-vaxers and Offit supporters.  


Some early posts on the FB page had indicated that some anti-vaxers were expecting Colbert to skewer Offit.  Those viewers were, no doubt, deeply disappointed.  Colbert's questioning of Offit was done in a way that gave Offit ample opportunity to explain his position, and for Colbert to throw some funny barbs in the direction of the anti-vax crowd.  It was just silly enough to be Colbert, and serious enough to get the point across.  


The vitriol that was being posted on the FB page was amazing, to me.  There was at least one person, maybe more, who seemed to be spending her whole day just posting - one post after another.  The thing is, her posts made no sense.  She posted quote after quote and link after link.  The links often did not prove her point, or even contradicted her point.  The claims that are so often made, that Wakefield's study had been replicated, were repeated like a mantra, but the links showed that those studies did not prove what the posters claimed they did.  Two or three of the five studies were, in fact, not really studies at all - they were case studies of one, two or three individuals who had ASD and gastrointestinal disorders.  That proves nothing about a link between the two.  Only one of the "studies" even comes close to being a replication of the Wakefield finding, and that was performed by ... Wakefield's group in Texas!  Not, exactly, an unbiased, disinterested source.  The finding is merely that there is some correlation (not significant, if I recall correctly) between ASD and GI issues.  That still doesn't link vaccines with ASD.


The moving target issue - first it was MMR, then it was thimerisol, then it was the number of vaccines ... - is huge.  But the bottom line for the anti-vaxers seems to be that it HAS to be the vaccines, even if they have no idea what it is.


I want to be clear here.  I know that some children have been injured by vaccines.  It happens, and it's awful.  It's also very, very rare.  For those children, and those families, and those friends, it is tragic.  Like just about everything else, there is a cost-risk analysis that says that the risk of those injuries is small enough that the benefit, for the vast majority of people, makes it worthwhile.  Clearly, for that person, it wasn't - but one never knows who that person will be.  NO ONE claims that vaccines are 100% safe.  Nothing in life is.  Not getting vaccinated isn't safe either.  And therein is the rub.  


While Age of Autism is vilifying Offit for his supposed blind adherence to all vaccines, they ignore the fact that he was the doctor who fought AGAINST continuing to vaccinate against small pox when the risk benefit analysis moved to the point where the risk became too high to justify continuing to administer the vaccine.  The histrionic opposition to vaccines is every bit as thoughtless as they accuse people of being when they "blindly" follow all the directions of their doctors.  


Personally, I wouldn't consider rejecting a tetanus shot for myself or my children.  The idea appalls me!  The standard vaccines, for me, are non-negotiable.  What about the others?  I don't get flu shots.  I still think there's too much hit-and-miss with the annual mix, and the annual angst about whether they got this year's right.  I'm also concerned about recent studies showing a link between flu shots and later development of Alzheimer's.  I'm also not approving the Gardisell (sp?) for my sons - I think that vaccine was rushed to market with inadequate testing and the testing for boys was even worse than that for girls.  But as far as meningitis, MMR, chicken pox, hib, Hepatitis, - my kids had all of those, and I would never second-guess myself on them.