May 10, 2013

It’s Not Fair.

Posted in Parenthood tagged , , , , , , at 9:21 am by openendedcomment

Mother’s Day hasn’t always been fun around our home.  If you read my blog you know that we are a blended family.  In our blended family, the “other” mom, the biological parent of two of my sons, is severely uninvolved in their lives.  She hasn’t seen them in almost fourteen months and calls about every three to four weeks.  This has been the norm for the past nine years.  She will go in spurts of seeing the boys once a month or so for a bit and then it’s back to several month to a year absences with no warning.    She lives only twenty minutes away and works in our same small town.

This is hard on any child.  Clearly.  This is harder still on my boys.  The eldest has special needs.  He has never been capable of processing her behavior as something that does not reflect on him but rather on her.   It hurts him terribly and despite the hundreds of therapy appointments we’ve driven him to and from and the constant reassuring words we provide that he is worthy and he is good, I worry he still doesn’t get it.  Last week was terrible.  She had called, as she tends to do this time of year,  and he called her back.  During the five short minutes they spoke he explained to her what his adapted sports were and why he loved them (it is his fifth season and the woman had no clue what it was about), he told her how old he was though she kept correcting him and insisting he was older than he is and he again had to defend that he was not a bad son and wasn’t asking for too much for wanting to get a schedule set to see her.  My second son, J, keeps it all in.  He avoids speaking to her whenever possible and when he does he simply says, in his words, “Whatever makes her not mad at me.”

And that is why I hate that woman.

Not for anything to do with me, not for anything to do with my husband or anyone else on this earth aside from how she makes my children feel.  Every time she calls, she hurts them.  Each weekend she doesn’t bother to show and can’t even be bothered to call or cancel, she hurts them.   The dozens of instances she’s said she will be attending a game or a concert or sending a letter or arranging a  visit and doesn’t follow through or show up, I am the parent that picks them up, that shows up, that makes up for and consoles them.   I am the one that fixes what she breaks time and time again.

It isn’t me who does this because my husband can’t or won’t or doesn’t.  He does what he can do.  It is on me because I am a mother and these boys need and deserve to know what a mother should be and for most of us, is.  They need this not only for their well-being but for the wives and children they will one day have. They need to know that what she does isn’t normal and is not at all acceptable.   It never has been.

Nine years ago, when they came into my lives, I went upstairs to tuck all four children in for the first time.  I entered my second bonus-son’s room, placed the blankets around him and began to sing a lullaby.  When I was done, he had tears on his little three-year old cheeks.  When I asked him why, he said he didn’t know mommy’s did that in real life.   That was also the night I told my now-husband then very-serious-boyfriend that I had to know that we were going to be married soon or I couldn’t do it anymore.  I was in love with more than him.  I loved his children, too.

I suppose you’re wondering why this is being written about Mother’s Day when this is clearly not a post about a good mothering moment.  Well, here’s the thing.  She wants the boys for Mother’s Day.  She wants a day to celebrate her being a mother.  I realize I have to let this go and that I shouldn’t be petty and I should support their relationship with her, however flawed, because at the end of it all she is their mom and I am the step-mom.  When it comes down to it, if she does plan to pick them up and spend the day I will tell them to have fun and smile, for their sake I will be positive.  But for right now, here in my little blog-world, I’m going to go ahead and say what I feel which is that this isn’t fair.  I am the mom that does the homework, bandages knees, cheers in the stands, makes them clean their rooms and take their medication, grounds them when they need to be grounded, knows who their friends are, what size shoes they wear, what girl they secretly like, their code words for when they want to leave a friend’s home, what they want to be when they grow up and why.  I am the one the school calls and emails.  I am the one who makes the Doctor and Dentist and Orthodontist appointments.  I am the one who writes checks for year-books. field-trips and camps and makes lunches and cleans puke and does load after load of laundry and makes their favorite meals when their little lives stink and this just isn’t fair at all.  I am sorry for whining and I do realize I am, but every Mother’s Day for eight years has been chaos because of her.  If she shows up  to see them it’s at strange hours and I don’t get to see my own mother or really celebrate with my biological daughter and son.   On top of that, my husband is usually on edge because she’ll have made some awful comment or threat as she picks the boys up rendering him useless until they are safely home.  If she doesn’t show up and sometimes even if she does, the oldest is so upset by her that he takes it out on Mother’s Day in general.  He has broken every single Mother’s day gift I’ve ever received from any of my children.  He doesn’t always do it on Mother’s Day, it could be anytime of year when he is upset with her, but those are the things he destroys.

I have no little vases formed of clay.  No flowers of tissue paper, no cards with names barely etched out in wobbly hand-writing.  Over the years he’s destroyed each one.  His Doctors tell me it isn’t against me but an outburst of anger at her that he doesn’t feel safe expressing to her so he expresses it to the idea of a mom.  They’ve gone on to tell me it is actually a testament to my relationship with him that he feels safe enough in my love to be able to misbehave without fearing I would love him less or reject him for it.  I suppose there is truth to that, but it still isn’t fair.  It doesn’t make it better.  It makes me hate her more…and that is something I will never say to them.

To them I will say what I have always said: Your mom is doing the best she can, she loves you and you’ve done nothing wrong.  I’m sure things will be better soon.  When you see your mom, remember to keep it positive,  to have fun, be respectful and enjoy your time together.

I suppose this is a post for all of the step-mothers and adoptive mothers and foster mothers and aunts and grandmothers and single dads out there who are raising children who may not be your own and loving them as though they were.  This is for all of you who do the work of the women who will be celebrated Sunday and have to turn that celebration over to someone else.  This is for the women who are mothers without carrying a child  but who still carry the load, made heavier by their failings…this is your day, too.  And even if no one else realizes it or says it out loud: I get it.  I know how hard it is.  You are a mom.  You do matter.  You deserve Mother’s Day, too.  Cheers.

April 1, 2013

Special Lies.

Posted in Uncategorized tagged , , , , , , at 1:23 pm by openendedcomment

You ask how old they are, because that is what people do.  I say 16, 13, 12 and 10.

“Oh cool!  You have a driver!”

And now I say that no, I don’t.  He has special needs and he doesn’t drive.  You are silent, or quickly tell me about someone else’s child who is now “fine.”  Which isn’t the same thing.  At all.

Or I lie and avoid it.

I have learned to lie.

You ask what’s “Wrong” with him

And I tell you he has Aspergers Syndrome (because it’s the one people have heard of) and you say “Oh! I know about that! So he has social issues but he’s really smart.”

I lie.

It’s not that simple.

He also has severe learning disabilities, ADHD, anxiety disorders, developmental delays and sometimes, he hears voices. But that’s too much and too personal for casual conversation so I say “sort of”

I lie.

When you meet my family and say “So, a big sister and three little brothers”  I quietly correct you that he is the eldest.  And you say “Oh, I just assumed…”

I say “it’s OK.  Honest mistake.”

I lie.

It isn’t OK, he’s going to cry himself asleep tonight or destroy something of hers.  Maybe both.  Because he doesn’t know how to take it and even though it isn’t her fault, he’s going to blame her for being “normal”

Or take it out on his brother, who has lost trophies and awards and friends.  Because he is afflicted by normalcy, too.

You try to do the “right” thing and tell me how lucky we are to have such a special and great kid and how our other children are being taught so much by him being a part of our family.

I lie.

When most of it is right and mostly I agree, that we are lucky, his parents,  I lie that they are lucky.  They aren’t.  They’re lucky to have him and they love him and wouldn’t ever want to be without him, but they aren’t lucky that we are always fighting the next battle which means spending more money and losing more time.  This means they aren’t getting to go skiing or be in hockey over the summer, or have friends over when he’s having a hard time, or go on the vacation we wish we could take or attend a camp, the money and the time goes to get and give him the help he needs.  Something that sounds and when written seems trivial but to kids this is a big deal. It isn’t even kind of fair to them.  It isn’t lucky for them when we’re so stressed we barely speak for days on end because we don’t know how to get to a place where there can be calm and peace in our home when chaos lives here each day with no warning as to when it will come roaring back…in some new awful way.  Lucky would be to have him and also have a break.  Or at least a warning when the “other guy” is on his way.  No such luck.

When you say that you don’t know how I “do it all”

And I tell you “It’s nothing”

I lie.

I don’t “do it all” I do what I can and what I can control, mainly because there is so damn much I have no control over.

When you say “Well, maybe you just need to….”

And I smile and agree or act like I’m paying attention

I lie.

You saw one weekend or one day or one hour of “good” and you have no idea what the other side is like.  He is Jekyll and Hyde and you’ve met but one.  So no, your advice doesn’t really mean anything to me.

When you say “but he seems normal enough, it can’t be that bad.”

I lie.

I spare us both, and I lie.

And yes, there are things that would and could be so very much worse and I remain blessed to have him and all of them each day…but there are times

Times when knowing I and we are blessed and that I should treasure each moment and endeavor to teach them all about unconditional love and acceptance, times when knowing it and feeling it don’t always agree…times when he and sometimes they ask me why this is the way it is and when he will be “better” and what more I can do to help him, when I don’t know that there is more to do that I am capable of…and still have the strength hold the rest together.

Months and days and hours of hurt and pain that a parent who can’t make it all go away feels and still has to explain…

When all I can do is lie.

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.

January 5, 2012

One step away…

Posted in Parenthood tagged , , , , , at 7:13 pm by openendedcomment

I am petrified.  Tonight we receive our son’s three year evaluation paperwork.  Next week we sit down with his “team” and discuss his “plan”…and everytime this happens (and it happens every year in one form or another) I want to scream and throw things and in general act like a 2 yr old instead of the “Mom” because when we deal with this, I don’t want to be the Mom.  I want to be a kid.  I want someone else to be the grown-up.  I want someone else to deal with it, to handle it…to do the right thing.  I want that so badly because in this situation, I can’t screw up.  I don’t get a re-take in the test of major-parental-duties.  I hate this.

I hate this even more for my husband.  I just called him and offered him a night out with his friends.  He will need it.  I will need it.  I will need to read through this alone, before him.  I need to know how to prepare him.  It’s what we’ve always done.

Our DS15 is my step-son.  I’ve raised him with my husband with little input from his biological mother for the past 7.5 yrs, so in almost every respect he is “mine”…but really, he isn’t.  His brother, for instance, my DS10, is “mine” all-the-way.

I love my children, all four of them.  I would die for them, I cry over them, I am filled with joy when they have one of those “moments” in life, but there is a difference with my eldest.

It’s hard to define where the difference lies.  I love them the same.  I worry about them constantly, perhaps DS15 a bit more than the others.  I am involved in everything, attend everything, do all I can…but DS15 has always been just a little less “mine”.

At the end of the day, it doesn’t matter where the difference lies, it is there and despite it and maybe because of it, most of the practical and emotional toll of this “plan” falls on me.  I am one miniscule step removed and it allows me to see the whole situation from a somewhat detached view that we’ve learned actually does matter in order to get through these meetings and constant barrages of “issues” and diagnoses with a semblance of sanity and, so far, without actually harming any of the “team” members…though its been close a few times.

My DH is devastated.  He’s been devastated for years.  It is heart-breaking beyond belief to have to realize and then accept that your son is disabled.  It is made harder when his parents and ex don’t choose to/want to believe it…they seem to be of the opinion that 5 private psychiatrists/psychologists, 4 IQ tests, 3 school psychologists and 2 pediatricians counting are wrong.  I can even sort of understand that.  It took my DH at least three years to accept that he wouldn’t just “grow out of it”.

I always knew.

Maybe that’s why I’m one step-removed.  Someone had to accept it all.  Someone had to deal with the situation and help this child in the most appropriate manner possible.  Someone had to drive him back and forth to his Doctor twice a week, 25 miles each way for years on end.  Someone had to do that who could handle what she would hear at said appointments and not break down twice a week, every week.  Someone had to be the bearer of bad news heard at these visits.  And, if you were ever curious, they do indeed shoot the messenger.  I am riddled with holes and learned, finally,to wear my Kevlar vest at all times.  Some say I am cold and other say I am cruel.  I had to detatch…just a little.  I had to keep a safe distance or my heart may have never recovered.

The thing is, after so many years of love and worry, I’m still not as removed as I need to be.

Next week I’m going to sit in a room with seven district employees who are going to tell my DH and I what they recommend for my son’s “plan”…not for high-school, but for his life.  They are going to use words like “group home environment” and “intellectual capability”…they’re going to hurt us in there.  Little needles of words that will poke and prod our souls while they remain clinical and maddeningly accepting.  My DH is going to squeeze my hand.  His nostrils will flare and his voice will grow stern.  He won’t be angry with them or him but at Him and IT.  I’m going to whisper in his ear “calm down, honey” and “it’ll all be OK, I promise” and “we will help him”…as I feign reaching for a pen in the bag I will hang on his chair.

I will ball my fists and walk out with crescent-shaped marks in my palm, but I’ll do it under the table so they don’t see.  I will leave there and drive straight to my office, stopping only once to breathe.  Breathe.  Breathe. Breathe in as there is no out.

I will call my DH; console him.  I will hold him that night.  I will listen and I will support.

I will remain one-step removed.  Even when it breaks my heart.