Way back when...

I've had this thought rattling around the back corners of my mind for a while now.  It's been tenuous and sometimes hard to grasp.  Right when I think I have it figured out, it morphs into something else and slips just out of reach.

I wish I had the benefit of someone talking to me early on and telling me a little something about those first few years and what they would really be like.

As Alex gets older, it's becoming harder and harder to remember those younger years and in some ways that's a blessing.  Its easier to talk about them and with time they seem less raw.  Alex is almost nine now, and while we have difficult days, hours and sometimes whole stretches of time, for the most part, our challenges are more about how to deal with challenges.  How to deal with bullies, social situations or, understanding what a person meant and then what to do.

We're not in the grind of the early years when he was two and screaming over the TV channel being changed even though it was on static to begin with.  Or coping when he freaked-out in the car for some unknown reason three days running, only to make the connection that we weren't going the same way due to construction and maybe, just maybe, going a different way was throwing him off?

Wondering if we should go out to the store because we didn't tell him we were thinking of going out even though we were out of milk, eggs and everything else.  Having to kick people out of the house as nicely as we could because it was getting close to bedtime and they had to leave or all hell was going to break lose if they did not get the fuck out of the house in ten minutes.

Knowing friends looked at you weird because you couldn't interrupt nap time or go to Mc Donald's because, even at the tender age of three, he refused to walk under those golden arches.  Knowing some of those friends would never understand and they had to be let go and fade away.

And being jealous that other kids ate more than one food and they ate it willingly.  And then going back home to sneak the protein drink mix into his milk at night so he would gain weight, and having to do it in secret because you knew, just knew, if he saw you, he would no longer drink it.

Knowing that sometimes the people you thought you could lean on and would get it were the ones who understood things the least and were the first ones to shut the door in your face.  And knowing that sometimes your own family didn't understand and the reality was, they didn't want to understand.  And deep down, that hurt the most.

And while all that was going on you had to take care of yourself.  You had to try and figure out what was going on with your kid, go to appointments and listen in shocked silence as they told you something you kinda sorta already knew.  And it still stung like a thousand bee stings when they said it out loud and it crashed all around you.

Then, there was dealing with the diagnosis.  I mean really dealing with it.  At first it was a relief.  My first thought was, "By God, I'm not crazy."  I had so many people telling me he was fine, he was just a tish excitable, he just needed a firm hand or I need to learn how to discipline.  It took a long time for me to comprehend I was right about my child all along.  That was a hard lesson to learn and one I still wrestle with today.

I will never doubt what I think is right for my child again.

And dealing with insurance and more often than not, coming to grips with how little was covered and how every therapy fell into flex account spending or fell under the category of private pay.  Wrestling with having OT and PT and Speech come into the house and set up shop and numbly nodding your head that, "Yes, you could be available for six hours a week on such and such day and PECS?  That sounds great."  And not quite knowing what PECS even was.

And somehow we've moved past those early years.  And having lived them, I will tell you those were the hardest years for me.  Having to understand something I didn't yet have a grasp on.  I didn't understand Autism and I didn't understand my child.  I didn't know what triggered a meltdown and I didn't have the faintest understanding of how it all pieced together.  I was lost, confused and scared.  More often than not, I numbly went through the motions.

I can't say what the future will hold for you, but I can tell you it gets better.  It gets better because you have an understanding, a new knowledge of how your child works.  With a diagnosis, a lot will change.  Some people will fade away and others will be thrust into the forefront.  With that diagnosis you will be given the ability to better understand your child.  You will begin to know their quirks, strengths and weaknesses and what makes them run for the hills and what makes them laugh.

So I guess what I'm trying to say is, if your just starting out, it gets better.  With time, you will grow into the mom your child needs.  You won't even know it but you will.  You will start to see what matters most and what once was important becomes a mere annoyance or something that simply no longer fits in your life.  You will be what your child needs.

I'm not saying it will be easy, its not.  There are days you will fall into bed exhausted and then can't sleep from worry and the irony of that won't get past you.  What I am saying is this: you will make it.  You will make it out the other side to a place where you are comfortable in your own skin, comfortable with your decisions and comfortable with your child.

In time you will get there, trust me.  You will get there.  Surround yourself with those who understand and those who want to understand.  Give yourself time to grieve the loss of what you thought your child was and time to accept what you now know.  And know that deep down your child is no different from what he or she was a few days or a week ago.

It's not easy but you will get through.

I guess that's what I wished someone told me when we were first starting on this journey.

You will make it, your child will make it, and everything will be OK.  


Note:  I have a family member who has a child that was recently diagnosed.  This is for you, and those like you, who are just starting out going, "Now what do I do?"  I'm here if you need anything.