"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!