And now what?

It's a very surreal feeling when you are practically begging to hear from a health professional that something is 'wrong' with your child.  (Yes I know nothing is wrong with them, but you know what I mean.) 

I've known for about 5 1/2 years that something was off about Aaron and I started tracking it.  All the night terrors, sometimes two or three a night, sometimes lasting for an hour or more of just trying to hold him and listen to him scream, mood swings, that were completely random and sometimes all day, pressure seeking techniques, that would literally knock me over sometimes, he would push on me so hard just looking for that release, ticks, such as eye blinking, hand slapping, shoulder shrugging, nose picking, all of it.  I tracked if any of it would change according to his diet, according to his environment, according to his sleep patterns, everything.  I did what I was 'supposed' to do, even though I would keep myself awake at night constantly questioning myself.


Aaron

 Was it him or was it me?  How dare I ever think for a second that this beautiful gift had anything wrong with him?  Should I just stop searching now and deal with it all the best we can?  How the hell will we deal with it?  Should we have had children?  How did this happen?  Was it something we did?  They seem to fit in for the most part at school, most days, but them let it out at home?  It has to just be the home.  We are horrible parents.  There is no other rationale some days.  It's a constant internal debate.

We have had so many successes and we sure do celebrate and recognize them.  With each one comes the silent struggle, "See he is fine.  Everything is good.  We can do this.  Nothing is wrong with him."  Then the scale tips back the next minute, hour, day and it's more than obvious that things shouldn't be this way.  I was recently speaking with a dear friend about outside support and how we are eligible, because of the boys' issues, and that I should take advantage of it, but I haven't.  I told her it just doesn't feel right.  They function, they go to school, they can talk, they are so smart.  She reminded me, and it keeps playing over in my mind, that we have "created a new normal and it isn't an easy life.  Most others couldn't step into it for a minute."  Boy that is so true.  For example, right now Adam is in bed screaming "Mommy you hate me.  Why did you birth me?  I was made to be killed.  I hate today.  I want my head to break open.  I know what I wish for."  Over and over and over.  And that's not normal.  He had a hard day.  I'm sure at school it probably looked like he had a great day, but he had a field trip and although he enjoyed it, he was over sensitized and has been miserable and cranky since he got home.  The worst part is, he doesn't know why he is grumpy, he knows he had a great day, he just doesn't know how to process everything he did, felt, heard or saw today.  This from a boy that everyone makes sure to tell me is so kind and sweet, and he sure can be, that is the truth.

I worry for my boys.  Constantly.  I worry that they will be vulnerable to bullies, peer pressure, low self esteem, depression, and many other things too horrid to put into type.  I hardly ever know that what we are doing for them is what they need.  Truth be told, when my house goes to bed, I cry a lot.  It is a tough life and it does take a toll.  All we know for sure is that we love those boys more than air.  They are our hearts and I breathe them constantly.

Today I hold in my hands Aaron's official diagnosis and even though I knew what it would be, for the most part, it's shattered me a bit to see it on paper.  5 1/2 years of independent research, talking to other parents, filling out literally dozens of forms (some over 30 pages long), has all resulted in this.  Aaron officially has Tourettes, Aspergers and ADHD.  The ADHD is debatable in my opinion, but worth a thought I guess.  I'm hoping it is not there for medicating purposes because I'm not convinced on that route yet.  I've always known he has Aspergers.  It has been so difficult to get diagnosed because he is "too social", but he actually isn't very social.  Adam is more social than Aaron but Adam got his diagnosis of Aspergers very easily.  I knew it was Aspergers and now being told that in fact it is Aspergers, I feel vindicated.  Don't worry, it's far from a glorious victory because ultimately, my child (both my children) have Aspergers.  Which is fine and they will learn to live with it and I know they will do great things in their lives, but it is a far from normal life.  And this is just the beginning.

And Adam finally calmed down enough to scream to me that, "I need a hug and kiss.  Sorry mom."


Adam


So now to work on me as well.  There is no need for my late night battles second guessing and constantly questioning our life.  It's all there in black and white.  My children both have Aspergers.  I hardly know what to do with myself now, but that won't last for long.

Okay, I feel like I'm babbling.  So let me wind this down with something profound, to me anyways.  This has been a huge struggle to this point.  No word of a lie.  From dealing with our everyday craziness, to constantly being available for my children, to changing our lifestyle to facilitate theirs, to fighting for a proper diagnosis.  I very humbly say, I have been told so many times how great of a mom I am and it's hard to hear sometimes (most times) because in the moment I always feel like the rug is being pulled out from under me.  I guess, ultimately the only people who ever need to tell me that are my children.  Whether or not I believe that to be true or not, there is one thing that I know I do well for my children and it is something that is lacking in many parents and it is a detriment to the world.  I am an advocate for my children.  I do not back down when it doesn't feel right.  I look for solutions and I make them into law.  If I have any doubt in my mind about anything where my kids are involved I ask questions until I get answers.  Where my children are concerned, I leave no stone unturned.  I answer their difficult questions and fully believe if they have the curiosity to ask it, it deserves a proper answer.  I get involved.  I show up.  I think into their future and try to equip them with the tools they will need.  I'm a mama bear to the extreme.  Don't get me wrong, that does not mean that I am an overbearing, paranoid, helicopter mom.  I watch from afar.  I give them their necessary space and respect their personalities and characters.  But I also make sure to ask them the right questions, I make sure to watch their reactions to things, I make sure I know them enough to know when something isn't right for them and I do everything to fix it.  I make sure that the people around them are safe people to be around.  If there is a lesson in something that my child needs to learn or know, I make sure they experience it.  Yes they have Aspergers, but the world around them for the most part does not care.  The world around them will still spin and they need to find their place in it and it is my job to help them find it.

I see many many kids who's parents refuse to admit when something is up with their kid, they don't want to admit that their child might be a little different, so much so that the child suffers.  When that child suffers, what happens?  What is the ripple affect?  Does it just affect the child, the family, the community, the world?  When we decided to have children, we took on an obligation to the world to raise them with compassion, dignity, love and respect.  We have an onus to society to raise conscientious, responsible individuals.  So when a parent wishes away a child's problems, it only creates more problems, but it goes so much bigger.  Please pay attention to your children.  Please help them grow.  Please teach them the tools they need to change the world.

Here is a glimpse into an aha moment that I had with Adam.  No surprise, I love dogs.  Boxers in particular.  I was looking through facebook a few days ago and showing my son Adam some pictures of a boxer who was a skinny little flea covered rescue but is now in a home of my friend (yes N&R it is you) and he is thriving.  More than thriving, he is doing amazing and boy does it show.  It overwhelmed me and I teared up a bit.  So Adam said, "Why are you crying mom?"  I said "because he needed them and they needed him and it changed the world for them, it's beautiful to see when it happens."  He said, "but one person can't change the world."  I said, "Why not?"  He smiled.  I smiled.  He got it.  His eyes twinkled and he hugged me and said, "We can try though."