Monday, October 1, 2012

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.  

51 comments:

  1. I <3 you so much for this. It's just what I needed.

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  2. I too remember those early years fondly. It was still intense with Jacob, much like your son, but it almost seemed easier then. Now we just prepare for school and what it takes for Jacob to have a good and productive day. But having a child with an ASD does get easier in some cases. It just takes practice.

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    1. Practice and understanding, I think.

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  3. Thank you. This brought me to tears.

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    1. I was thinking of you in some parts but I know you know that.

      xxoo

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  4. So nicely written!

    I couldn't agree more, those early years were rough. But somehow you come out on the other side, still in one piece.

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    1. Yeah, its different now. Not any less harder but different.

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  5. Thank you. I could have written this post word for word. Except the part where things get better. My Aspergers child is only 4 and I am going through the roughest time right now. Thank you for giving me a glimpse into what the future could hold. I cried throughout the whole post.

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    1. Bonnie, it will get better, it will. At four I was in a fetal position in the bathroom with a pint of ice cream with the door locked. PM me if you need anything---the way I got through it was by having friends who got it, I mean really got it.

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  6. This is beautifully written. My son is six, and I can honestly say that we are all in a better place than we were a few years ago. To all of the newbies out there, never let go of hope.

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    1. Thanks Lisa. And you are so right. Never let go of the hope.

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  7. Think what the early years would have been like just 50 years ago. Thank God now is now.

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    1. I know, right? Eight years ago I never even heard of a weighted blanket.

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  8. Great post. I think we're finally getting to the transition years. I'm starting to feel like I'm more seasoned now. But then the days come around just to remind me that I'm definitely no expert. And that's okay. I'm learning daily. Thanks for sharing!

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    1. Me too, don't get me wrong we have our days. We do. It wouldn't be Autism if we didn't, huh?

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  9. Amen. To it all. Brilliantly written and so obviously from the heart. Thank you.

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  10. Hell yeah! I love this post, beautifully written!

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  11. Thanks for this. I needed to remember.

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  12. Thank you.

    We still don't have a diagnosis, but there had been much talk of a possible one. So much of this still applies, and it gives me hope.

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  13. I heart this post like I heart u
    Its so true - it gets so much better

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  14. This is so true. It's like childbirth. Time softens the actual events.

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  15. We are three years in, but it still feels like the early years in many ways. It is so helpful to remember that things always change, and can get better. Thank you!

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  16. Utterly beautiful and clearly heartfelt. I'm starting to forget the details of the early years too. It's weird to get glimpse still of what once was. As they grow, regardless of how verbal or where they fall on the spectrum, everyone grows and the harsh and hard days change. For us, they have softened significantly but still make appearances. Your words will help so many people. I'm sharing this one today! xoxo

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    1. Yeah, I often think of you because T is a year or two behind Alex. When you post sometimes, I go, "Ahhhh, I get this..."

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  17. I hope so many of the people who need you find you. You are beautiful! xoxox

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  18. Beautiful, hearfelt, and inspiring. I got a little choked up, but in a good way. Thank you!

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    1. I"m still waiting for my barrel of wine (or vodka) from when the kids were sick..... :)

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  19. Thank you so much for this post. It brought me to tears. Finally someone understands. I feel so out of control most of the time. I'm so tired of people (even family) telling me I'm crazy that all kids speak at their own time, that she just needs disipline, and that this is why they call it the terrible twos. When I know deep down it is so much more. I feel so isolated in this world, her world that we live in.

    Thank you so much for being the person that understands, for being the person that says you will make it through, and for being the person that offers help and guidence. Thank you for taking the time to write this to help me get through. It meant so much to me. It was just what I needed to hear.

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    1. xxoo...it's not easy but if what you're going through was anything like I endured then NO, you're not crazy and NO she's not like all the other kids. Not in a bad way, mind you, just that what your child is doing is so different from the other kids---but it's not different enough for everyone else to see so they just assume you're the one with issues. Sigh. You're not alone in this.

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  20. My son went through all those early years never being diagnosed. It was awful. He missed out on much of the help and therapies he could have gotten. His dad yelled a lot. I got blamed a lot. Somehow we made it through. I cried when he was finally diagnosed with Aspergers in 8th grade. He was relieved. It was a good day.

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  21. You are truly an inspiration, lizbeth!

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  22. Excellent post my lovely friend and so well written.
    I remember, oh boy do I remember! *AJ is 19 now and I am so very proud of who he is. Thinking back on my single mom days and all the ways I had to think through doing normal everyday stuff. He went through the system just like me, with no diagnoses or any extra help. I knew back when he would never sleep. When I had to give him tinned custard in a McDonalds cup with a straw and add milk because it was the only way I could get him to drink. Yep, I had to sneak in the Minadex to try and build up his appetite. Such a skinny kid, with way too much energy and far too busy to eat.
    Getting the diagnoses for *CAL took so long but I wasn't going to let her miss out on ANY help. I knew as soon as she started school and spent her dinnertimes with her hat pulled over her face rocking in the corner of the playground. She was 4 years old when I first pointed it out, it wasn't until she was 9 that we got a diagnoses of Autism/Dyspraxia. You'd think with me being Aspie I'd recognise these things earlier. But the thing is, to me it was all just normal. When it come to the shopping, my kids having meltdowns/shutdowns was normal. It was just me and brother all over again. I just didn't know that everyone wasn't like us, that these things were actually easy for other people. No one really asks how you think things through do they?!
    I learned my way of coping, it's not always great but most of the time I get by. My kids will get by so much better than me because they know they are on the spectrum.
    Your boy is going to do great, I know that because I see how much you love him and how you will always fight for him. Your kids are very blessed.
    So going to share this post.
    Love you loads. xxx :)

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    1. Thanks Lovie. And you know what was funny early on? I had similar experiences just assuming thats how all kids were. I didn't realize it's not 'normal' for kids to scream in the store and get upset at a change in routine or if we used a different tooth paste. I had no idea.

      xxoo--Liz

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  23. this was tear jerking for sure. thank you so much for sharing my life ;) "by God, I'm not crazy" were my exact words. I actually lost a friend in the community when I mentioned that I thanked God the day I received her diagnosis. I had prayed to God just before opening the envelope, "Lord, I don't care what it says, as long as it's positive and a step forward." it was such a struggle and, we did always know it was something-just needed the confirmation and documentation. I remember my daughter letting out the demonic type scream one day over a McDonald's thing and I remember thinking at that moment-"what am I to do? I don't even recognize my own child?!" thank you for sharing that! I have a lot of people who ran for the hills when I jumped in head first with her diagnosis. that also hurt, having one friend push you in that direction to get the diagnosis because she actually sees it due to her own kid having it, and then falls off the face of the earth. odd. it really hurts when family doesn't want to be involved either...oh, sorry for rambling. I just wanted to thank you for another wonderfully written, heart connecting blogpost <3

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    1. It is amazing the people that come into your lives with Autism and the ones who leave quietly or not so quietly as things progress....having that diagnosis confirmed for me so much. That I was right, I wasn't crazy and that there really was something going on. It was such a huge relief. HUGE.

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  24. THANK YOU!!!! We're 2 yrs in to our diagnosis and I'm still struggling to get it together and do all the things that I think I need to do. But already things are somewhat better. You made me cry when you said "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."

    Anyway, thanks again.

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    1. Sometimes it's not the Autism that's the hard part. That is, in some ways, the easy part....its all the other things going on in the periphery that seem to take its toll. I get it.

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  25. You know me... I try to roll with it, but we too are still in those early years. And right now, we're in a big ol' puddle of sucking hard core. Thank you for the encouragement, my friend -- and the reminder that it will get better. I REALLY need that right now!

    ((hugs))

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  26. I need this. My children are still molding me into the mother they need:)

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  27. Sometimes, I think no matter how long you've been "living special needs", it's still good to hear the words, "you will make it, your child will make it, everything will be OK". Good words for ALL of us, Lizbeth.

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  28. Yes yes yes. Been there, done that in all of those early days situations. It is getting 'easier'. Or maybe I'm getting easier, who knows?! Anyhow either way, life is good. Thanks for re-affirming this :)

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  29. Yes! And that's all I have to sayabout that!!!

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  30. Wow. You're so great. I can relate a little bit - just with depression and anxiety. The worst was not knowing what was going on. Once I knew, and once I got used to the concept, it got a bit easier.

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  31. Thank you! My 4 year old son was Dx with PDD-NOS in July. It was almost a year coming but still hearing the words stung a little. It's all a bit overwhelming but we're slowly making our way toward our new normal. Not that he's any different of course, he's still the same awesome kid he was before all the evaluations. But we're now accepting that IEP meetings and therapies are here to stay. Thank you for the hope.

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