July 29, 2012

No, you don’t know.

Posted in Parenthood tagged , , , at 4:10 am by openendedcomment

I am a parent of a special needs adolescent.  Notice I did not use the word “child.”  He isn’t a child.  He is almost sixteen years old.  I am his step-mother and he lives with my husband and I full-time.  As in he sees his biological Mother a few times a year at the most and it has been this way for many years.  This means that we never, ever get a break.  Ever.  Not a break from parenting, we don’t want that, I don’t want that: but a break from the 24/7 worry and responsability…to know that we can relax.

And chances are, you don’t know what that is like.  Puberty is difficult for any parent.  The teen years are never the best.  But this is a whole different level of heartache, struggle and angst.

I am writing this in the hopes that other parents and caregivers who are experiencing some of the same feelings we (I) are/am will know that they are not alone.  I am hoping that I am not alone.

Last night a woman I barely know took it upon herself to explain to me that in her opinion (she’s met him a handful of times and exchanged maybe a hundred words total) that he was fine and we shouldn’t have him in any programs or on any medications.  We were talking about a program at our local high-school and the subject came up.  OK, I’ve heard this before from perfectly well-meaning people who simply don’t get it and this time…this time I stayed perfectly quiet and nodded as she explained how perfectly normal he is.  I was seething inside…seething at her judgement of me and of my husband for doing everything we can and having been doing so for years and years and years while struggling with the guilt of sometimes just wanting it to be easy….just wishing for one day he could be “normal” whatever that is…”normal” the longer I live the more I question that there is such a thing, and we wish could go to bed at night without wondering what he was going to do when we are asleep…hating the medications and trying to find a way without them only to learn over and over again that it was/is a danger (yes, danger, and I don’t use that word lightly)  to not rely on them…or the guilt over wanting just have a break…just for a few days…please, just once.  Not a worrying-about-whats-happening-because-we’re-not-right-there few hours, but a break that would allow the guard to at least be lowered if not put down even for a night or two.  None of this means that we would change him, because we wouldn’t.  I could not imagine him any different from who he is nor would I want him to ever feel he should be or needs to be anyone but who he is, he doesn’t.  He is our son and we love him exactly as he is.  But how do you, how do I, ever explain this?

He looks “normal.” Better than normal.  He is so very handsome and he has the biggest, most innocent looking blue eyes you’ve ever seen.  But not everyone who struggles has physical signs.  He can be wonderful, he has an ability to see the good in things the rest of us are too jaded to notice.  He is driven and motivated to a level that is often astonishing.  His work ethic puts everyone else I know to shame, he perseveres far past anything I am nor or ever have been capable of.  More often that not he is wonderful, polite, sweet, kind and good.  There are other times, though.  Those are the times that break our hearts.  I didn’t tell her what we deal with.  I did not want to invite the conversation to continue.  I know if I’d gotten into it she would have shut up immediately…she would have been horrified, stunned and perhaps even embarrassed for assuming so much when she knew so little…a few of the less extreme examples would have sufficed, but why should I?  Why should I have to?  Why does anyone else think that they have the right to give their opinion, much less advice on something so deeply personal and painful?

He isn’t easy to live with.  At all.  Don’t get me wrong, I love him.  Dearly.  One does not cancel the other.  Him not being easy to live with is not very different, I imagine, than many parents feel about their adolescent children.  I’ve heard many women and men I know state that they can’t wait for their child to leave for college.  And they can say that.  They can say that because it’s expected to be totally and utterly fed-up with a teenager every now and then.  We can’t state such things because then we sound like we don’t accept our son.  The inequity is mind-boggling.  But parenting this child has been a challenge.  Aside from the constant guilt over feeling challenged, one of the greatest challenges is in people having no idea what they’re talking about and assuming they understand his needs by simply spending a few hours with him here and there.  In them telling me not to let a Doctor “label” him…because they don’t belive in labels.  In telling me that he seems perfectly fine and that we should get a second opinion.  In saying he will “grow out of it” or he’s just “going through a phase.”

Attention well-meaning albeit grossly inappropriate individual: You have no clue what you’re talking about.  You have no idea how hard it is for us to ever, ever admit we are struggling.  You do not get it that for every time we seem the slightest bit frustrated we have already cried ourselves to sleep for nights on end, called the Doctors, read at least one more book and spent hours upon hours conversing with him about why and  just why he would do these things…that we’ve had to spend more hours with our other children trying to help them cope with the chaos his actions create before we ever let it show.  The shit that would make you call every single one of your girlfriends, your therapist and your Mother doesn’t even make us blink.  I have never, ever told anyone, including my parents and my best friend all of the details of the things we see and cope with on a daily basis.  I know my husband hasn’t, either.  It is simply too hard.  Too humiliating.  I’ve come close and I know if I were to ever start really letting it out, I’d never stop.  Part of me thinks that if I dont’ say it…all of it…that I can keep it from being too real.  It’s how I cope.  It’s how am able to go forward and keep working for him and helping him each day with the same amount of dedication and hope as the one before.  I tell people just enough for them to understand that yes, he has needs and yes, it can be challenging.

We have gotten a second opinion.  And a third.  And an eighth.  We have spent tens and tens of thousands of dollars year after year that at times we did not have in order to try to find something, anything to help him.  We have looked for a way to avoid a label but the label gets him the help he needs and without it (the label) he does not qualify for the only school program that has ever helped him and the only place he’s ever felt comfortable socially.  So I’m sorry if it offends you, but yes, there is a label.  It’s there for a reason.  He won’t grow out of it.  Do you have any idea how hard that is for us to accept?  For him?  This isn’t a “phase” it’s not something you can “fix.”  All we can do is help him grow to be the best man he can be.  No different from our other children, from yours.  With luck and faith and a great deal of hard work he may, may be able to live independently one day.  The “experts” say no, but we do have hope…and there is his perseverance.  Which should never be underestimated.

He is almost sixteen.  It breaks my heart that he won’t be getting his licence.  He should be in drivers ed.  I hate it for him that he isn’t, but he would not be safe on the road, not safe for him and not safe for other drivers.  We didn’t decide this on our own, his Doctors and educators were involved and were all in heated agreement.  No way.  He could not pass the drivers test and even if he could, he should not.   At least not now.  So, when you are at my home or run into me or talk to our son and tell him he can drive soon or ask what kind of car he’s getting or chastise us for making him wait…it’s cruel.  It is salt on a wound.  We accept him for who he is and to tell us who he should be or who you think he is, however well-meaning, is mean.  It hurts.

I’m not alone.  Even if I feel as though I am, I know I can’t possibly be.  I can’t be the only Mother, Step-Mother, or relative dealing with this.  For all of them and selfishly for me and my family, please: The special needs families you know, support them.  Don’t give unsolicited advice, do give a shoulder.  An ear.  They likely won’t tell you everything, but what they do say…just listen to it.  Even if you do happen to know another child with the same diagnosis, it does not mean you know their child.  All are different.  All have their own challenges, their own needs, their own level of ability.  Even the “normal” ones.  It is hard enough for we parents of these children to come to grips with the reality of the situation, don’t make it even worse by enforcing their already deep feelings of guilt over not being able to prevent or fix it by telling them they are wrong, or over-reacting.  Chances are they are under-reacting…and whatever they’re doing, they’re doing it from a far more informed position than you.  Respect that.

Remember that many of them are also raising other children, and that those children also need their parents.  That sometimes there are only so many resources, only so many hours.  That though the special needs child will always get the lion’s share, the other children deserve and need their parents and a life, too.  It’s hard on these siblings, hard to take the back seat and hard to be understanding so often.  The resentment is inevitable and that is its own unique set of challenges to be addressed.  Again, it’s never easy but it is reality.

I wish that well-meaning woman last night understood.  I hope that someone reading this approaches a man or woman they know differently as a result.  If not, that’s OK too…I feel better for having said it.  Of course with it being about this subject that I hold so much guilt/frustration/stress and heartache over I’ll likely delete it in a day or so.  But for now its eleven PM on a Saturday.  A night my husband and I were supposed to go out.  A night, one of so many, too many, we’ve cancelled over the years as tonight was a bad night for our son and we couldn’t leave him with a sitter.  *Sigh* Maybe next time.


1 Comment »

  1. Sending good thoughts your way…hang in there.

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