Banging My Heart Against The Wall

I truly endeavour to not shine a bad light on my life.  I am blessed beyond my wildest dreams.  I have a wonderful husband who is kind, sweet, handsome and so supportive.  He still gives me butterflies when he smiles at me.  I have two smart, funny, loving and sweet boys.  I live on a beautiful peaceful acreage.  I have three beautiful and compassionate dogs who really are my best friends (no mention of our next couple days with DeJa in this blog - I just can't yet).  I have parents who I love and admire, who are there for me through thick and thin, never judging.  I have a couple close friends who know me well - very well.  I am able to volunteer when my heart calls me to.  I love my profession - yes I love accounting.  This is my life and it is beautiful and I don't ever want what I share in my blog or in person with anyone to be misconsrued as misery.

So here we go.....I am a professional when it comes to my children (as most moms are).  I know them inside and out.  Sometimes they throw me a curve ball, but I usually have them pegged.  What irks them, what makes them happy, what won't work, what I've already tried, blah blah blah.  We have been searching since Aaron was 2 (he'll be 8 in July) for an assessment that fits what he needs.  We feel strongly that he has tourettes and aspergers.  We do live with one child that has aspergers and done so much research on it, I could likely write a book.

Aaron had a psycho-educational assessment (no it does not mean he is psycho or psychotic).  Just an in depth look at what makes him tick, no tourettes pun intended.  And although it was very thorough, it didn't pinpoint the root of what is going on with him.  Yes he has tourettes, yes he is on the spectrum, but where does he fall in the spectrum???  Still no idea.  I refuse to let even a glimmer of PDD (Pervasive Developmental Disorder) hit his assessment.  It receives little to no help from most of the resources we need help from.  PDD is just a nice way to say, your kid has issues, we can't figure out what they are and really a PDD assessment puts us back to square one.  We need a clear and specific diagnosis for Aaron to get very specialized help for Aaron.  He is complex.  He is more complex than his brother who has an aspergers diagnosis.  Aaron changes constantly.  What works for him today, doesn't always work for him tomorrow.  He has a lot of anger and his mood swings are spontaneous.  He presents more asperger markers than his brother except he is social.  But he's not really social.  That's just it.  He has a friend at school that he plays with.  A friend.  His brother is more social than he is.  We go to a kids bingo and he can't handle the pressure and needs to wait in the hall, while Adam is a social butterfly.  He has learned to blend into his social settings, but when he gets home, we all pay the price for whatever socializing he has done during the day.  It's a stack of cards and all day he keeps adding to the stack and adding to the stack and when he gets home, he doesn't just knock down the stack, he burns it to the ground.  So, on one marker he is just shy of having aspergers because of the social element, so we will just say he is on the spectrum.  3 out of 4 markers, yes he has aspergers.  Just a hair shy on the 4th.  Fine for the school, fine for everyone, not fine for my child.  We need help for a child with aspergers, not a child on the spectrum, it's too vague.  The assessment isn't complete yet.  There are a couple of components that need it to be complete, and maybe it will show yet.  But I'm frustrated.  Don't get me wrong, I don't "need" both my children to have aspergers, but I do need to get them what they need.

I'm so frustrated.  We have been searching for 5 years.  I'm so tired of treading water.  I'm so tired of my son and my entire family suffering.  I can't bare the idea of waiting any longer because one checkmark was on a 4 and not a 5.  It's been an emotional day, if you can't tell already.  Sitting in a room hearing all these findings about your son is heart wrenching.  Even if you already knew everything you are being told.  The validation is painful.  Knowing we still have no concrete answer is ... I can't even explain it.  Something I will never get used to.

If I have ever told you I'm having a hard day or shared with you something about my life with my kids, please don't take that as a sign that I am unhappy.  Take it as a sign that I trust you.  Don't tell me how to fix my kids.  Don't ask if I've tried this or that.  Don't tell me I'm crazy.  Don't tell me how sweet my kids are.  Don't tell me that my children are always good for you.  Just smile and maybe give me a hug.  The truth is, that although there are many amazing things about my life - my life is hard.  It is so fucking hard.  It might not be hard forever.  But right now, it's hard.  I don't need sympathy for it, don't insult me with that, I just need the few minutes I have here or there to maybe vent, cry, scream, whatever.  Then I'm good and I can face it again.

I am the mom, the wife, the friend, the daughter, that will always give you a smile, lend an ear, make a joke, speak my mind, put myself out there.  It makes my heart happy and that is who I am to the core.

Now I'm going to vent.  Leave now if you can't handle it.  This is where the hard part comes in.
It is an impossible life when you see your child suffer every day.
It is an impossible life to hear your child say they hate themselves, to say they hate you.
It is an impossible life to explain to someone who sees your child at his best, that there is another side that is exactly opposite that he only feels safe enough to show to his family.
It is an impossible life to feel like you are helpless to your child.
It is an impossible life to fight with your child everyday.
It is an impossible life when your child can and does effectively tune you out completely.
It is an impossible life when your child says you don't love him.
It is an impossible life to hang your heart on a hook on the days where your child just needs to rage and you need to be strong.
It is an impossible life to help your child through night terrors that just don't seem to stop.
It is an impossible life to believe compliments of being a good mother when you yelled at your children moments before because they just wouldn't stop.
It is an impossible life to wait until they are asleep to cry.
It is an impossible life to fear the future for your child.
It is an impossible life to worry that your child might one day hurt themselves or you.
It is an impossible life to not be able to just kiss it better.
It is an impossible life to watch your child bang his head against the wall.
It is an impossible life to have to explain to other people why your child is acting the way he is.
It is an impossible life to be excluded from things because your child will be coming with you.
It is an impossible life to try to explain why life is harder for him but why he is so wonderfully unique.
It is an impossible life to hold your child while he cries because he can't control his stress.
It is an impossible life to be expected to be screamed at by your child for an hour and then next moment be asked for a hug by the same child.
It is an impossible life to be an advocate for your child when you are standing all alone against the world.
It is an impossible life when you can't have one day in your home that does not consist of major warfare between your children.
It is an impossible life when your child says he's stupid, even though he is gifted.

It is an impossible life when you are constantly banging your heart against the wall.

*Vent over...and yes I will still be smiling tomorrow but I'm allowed to be pissed off today.*