Friday, September 6, 2013

When We Fall...

When a baby learns to talk... She babbles. She makes noise. She keeps babbling. She learns to talk.

When a toddler learns to walk... He falls. He gets up. He falls. He gets up. He learns to walk.

When a child learns to run... She trips. She falls. She gets up. She tries again. She learns to run.

When a child learns to ride a bike... He gets on. He falls. He gets on. He falls. He gets back on. He falls. He learns to ride.

You struggle. You learn. You experience heartbreak. You suffer disappointments. You get up. You dust yourself off. You continue on.

You sit in the office. You hear the words. "He has what we call Autism." You react.

You fall. You get up. You continue on.

You struggle teaching him to speak. To dress. To eat. To just call you "mom."

You fall. You get up. You continue on.

You sit helplessly as you watch your son rage against himself. He wants a new brain. He doesn't understand why it "doesn't work" the way people expect it to. Why can't he be like his friends at school? Why can't he understand what others do? He wants to die.

You fall. You get up. You continue on.

You find yourself holding him. He's raging. He's angry. He doesn't see you. He doesn't see his mom. You are there. But he doesn't see you. He sees anger. Upset. He surprises you with an amazingly powerful right hook to the cheek.

You fall. You cry. Your world shatters again.

What do you do?

What you do next defines you. It makes you. It breaks you.

What do you do?

Do you get up and try again?

Do you decide you've had enough and give in?

What would you do?

I see his frustration. I can see it in his eyes as he rages within trying to get a thought out.

I see him struggle to tell me an idea.

I see him fight to tell me how he feels.

I hear him rage verbally about his brain. He screams that he needs a new one. He doesn't understand why it "doesn't work" like he thinks it should. He beats his head with his fists, leaving scratches and bruises, trying to get it to "work."

I watch him struggle with who he is and the body he is in.

There is nothing I can do to make it better. Nothing I can do to help him make sense of it.

All I can do is hug him, tell him how much I love him, tell him he's perfect as he is, and duck.

I never knew just how much I would struggle as a mom. I cry more than I like to admit. I scream. I yell. I throw things. I totally lose my mind. I have nights where all I want is a drink so I can relax. I am constantly stressed. Constantly on my toes. Constantly in high gear.

I get hugged, kissed, scratched, hit, punched, snuggled, yelled at, smiled at, and gifted. All in one day. Sometimes all in the same hour.

And when I cry, I cry hard. Sometimes it's a single tear sliding silently down my cheek unnoticed, all the upset contained in that single drop. Sometimes it's the ugly cry locked in the bathroom.

When I crack, I crack hard.

But I do the only thing I know how to do.

Get up.

Dust myself off.

And continue on.

My baby is relying on me. He's the most precious gift I have.

Tomorrow is a new day.

We adjust. We adapt. We overcome.

**Editor's note: Whenever I do break down and lost my cool it is rarely in the kiddo's presence. I will leave the room. I will take him to Grandma's. I will do what I need to do to get a break and regroup. We all need a plan. What is yours?**

31 comments:

  1. My hands remained paused on the keyboard a very long time as I cannot express adequately how exquisitely beautiful this is. Even though they are typing now it still isn't possible. Never stop writing.

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    1. I will do my best to keep writing... ;) I'm glad you loved it so much. <3

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  2. I'm a grandmother to an ASD 7 year old boy. He is my precious daughter's precious son. This is wonderful writing but terribly depressing to me. I read lots of blogs, etc. on autism and nothing I read is encouraging or uplifting. So, there is no answer? Just keep on keeping on? I want to know WHY 1 out of 88 kids, WHY 1 out of 53 boys.
    I only commented as "anonymous" because I don't know how to post any other way. Senior Citizen, you know.

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    1. That's really all we can do. We have to just keep pushing on, keep fighting, keep loving our kiddos. We don't know why. Study after study proves that we really have no idea why. So all we can do is just do what we can for our children to ensure that they have a bright and happy life and future. A lot of blogs will mix the happy and the not-so-grand. We write because we don't want anyone to feel alone, as no one truly is, and to share our experiences in the hopes that it helps someone. We have a lot of really great moments too. I see a lot on facebook on the pages that go with many of the blogs. We do share the uplifting with the depressing. We just continue our fight for acceptance in the hopes that one day the why won't matter. It's often all we can do. Support, fight, and love those kiddos!

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    2. "Anonymous" getting up and dusting off is all we can do.it doesn't help that we do not have enough services for our kids and families. the system is broken. I have 2 ASD kiddos, one is 4 and the other is 17 months-he seems to be self injurious at times...how must it feel to bash your head against the wall to feel better??? I personally have no family support and very few friends due to nobody gets why I do al of these therapies for my kids and that they 'don't get' them. There are times that I really feel that it is just me in this. I know that I'm not and I thank God everyday for my Respite Care. But that is all I get.

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  3. you just described my life and myself WOW!! thank you for sharing xxx

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  4. i also ask myself why? i have 3 sons with Autism all 3 are moderate to severe all 3 boys completely different. diagnosis's are only recent 1 being last week..this blog just described my life.. WOW xxx

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  5. I am sobbing. And standing and cheering you on and applauding you!!!!! You are AMAZING and what you do MATTERS. KEEP THE FAITH!!! XOXOX

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  6. It's been long enough for us (my 2 sons and I) thhat this is a way of life. We laugh, we get mad, we cry, we giggle, we snicker, but we NEVER give up. I don't take excuses for an aswer. There is always a way to skin a cat. Even if its pulling one hair strand out at a time.

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  7. Great read and very powerful. We as parents of ASD kids never give up, we may break down but we pick it back up and never give up. We search and seek new therapies and treatments some help some don't but we never stop Thank you for the words <3

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  8. Well said. Very well said. Definitely an area for public discussion....every parent having a plan "b". There is a program created by Bethany Christian Services called the Safe Families for Children program. (http://m.bethany.org/mobi/safe-families-children ). While this particular program would never work for all of us as a backup plan....what if there WERE a plan "b" specific to the needs of our kids with this same premise? You know, we talk about special needs trusts and estate planning. We talk about interventions, but this....even after what we keep seeing, THIS talk about plan "b" is still taboo. Very eloquently stated and a very strong point made here.

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    1. Thank you for sharing that information. Having a plan in place is so important. We need to have options. It's funny how people don't talk about it. You would think they would, especially with all of this recent news. Hopefully that changes soon.

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    2. Safe Families is kind of sort of voluntarily sticking you kid into foster care, but without the (minimal, far too often not met) standards:
      http://m.startribune.com/?id=128599723

      SF also has a pretty bad reputation with respect to refusing to return (neurotypical, healthy, generally very young and often white) kids to their natural parents, ie voluntarily handing your kid over to not quite foster care makes it hard to get your kid back, under certain circumstances (admittedly ones unlikely to apply to a kid with severe autism and aggression issues).

      That being said, something, anything as a Plan B is better than nothing (hurting yourself or your child).

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  9. I am so happy to have come across your post tonight. Today was a horrible day and we were told that his teacher believes that our son is not just Autistic, but that he may be bipolar as well. To any parent this would be hard to hear, but as soon as I heard it, I started blaming myself. I come from three generations of varying degrees of Biopolarism and struggle with a mild form myself. I already feel bad because my sister has Aspergers, but now my son has another bad gene and it's my fault. My son has become a violent, hate spewing stranger and it is my fault. He is only four and a half and I have managed to utterly screw his life up. I was at a loss and felt scared, angry and like a complete failure. Then I came across this. And it reminded me yea, I have been at this poing before, but I kepg on fighting and trying all I could and this is not going to be any different. Sorry for my ramblings. Thank you, always good to know I am not the only one.

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    1. You are not alone. I can imagine that those words were very difficult to hear. But please don't blame yourself. You are doing the best you can with what you have. It's all you can do. We make mistakes, but we grow and we learn as well. Be sure to reach out and get the support you need.

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  10. I love your words. They convey how we all can be so different, yet the same. You've reminded us that when our days are at their bleakest a deep breath and counting to ten can go a long way. You've reminded us that those in our lives who have special needs are a gift to us.

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  11. Powerful and so very touching. Bless you and all the moms who live this life (and dads and grandparents too)

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  12. AMAZING! I have no other words. You have touched me and my life as I am sure many others. Prayers for us all.

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  13. Thank you for putting this into words. People ask how I do what I do. My only answer is I have to. You just suck it up and keep going. It's exhausting, but those sweet hugs and cuddles are more precious than anything. Sending *hugs* I love having an online community of people who "get it". Before I found so many wonderful parents online that share their struggles, I felt so alone. I now know that after a really bad day, if I have the strength to go online, I will find support, understanding and sometimes I read things that make me realize my day wasn't as bad as I thought it was.

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  14. I hate what asd have did to our life how people have turn away from us how things get twisted when I post something on my page about being strong & don't tell me how to raise my child. Now they don't say anything to me or him they say that way I can't get mad since I don't need help anyway. I once call a person ignorant for staring at my child having a melt-down they told me you're the one that birth a retard in front of my child so I have learn if I don't want him insulted it's just best to shut up. As I was told once your child your problem deal with it and stop acting like everyone owe you something. So I do.

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  15. My 9 yr old son is diagnosed w PDD/NOS. So many times has he in tears broke doke and told me he brain is broke, it doesn't work, he needs a new one, its not fair, and he can't learn something because he believes he s stupid. It s heartbreaking. I've watched him slam his head on tables out of frustration because "he can't think" bc his brain doesn't work. Or searching in his mind for a thought he knows is there he just cant find it. Hes never been violent toward me hopefully that doesn't change w puberty. But to watch ur child struggle is so hard especially when they actually have so many talents maybe its not math or reading talents others would right away appreciate . But he's smart and its so heart crushing to hear a child say they think of themselves as stupid or hate school because its just to hard.

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  18. My child is what they call Higher functioning yet this still brings a tear to my eyes as I struggle each day to just keep going with permanent back issues I will never admit to anyone were caused by my own child. Hence the posting under anonymous. This poem expresses so well that when its your child you just have to keep on keeping on no matter how difficult it is.

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  19. I read this twice today. My step son is non-verbal and very rarely does he hit himself or others. We did go through a point where he was injurious almost every day, during that time I was working in a group home with kids who were DD and behaviorally "challenging." I decided to quit the job because I could not deal with it at both places. I often wonder if he could feel my tension and hyper-vigilance and it caused him to feel uncontrollably anxious, too. when he needs a break, we give it and he goes into his closet and works it out (we monitor him to be certain that he is not hurting himself). Once he goes over the edge we can do or say nothing to help him. He works it out better on his own. yet, even the small meltdowns are hard, because you can't make it right for him, and most of the time we just don't know what caused the meltdown.
    I often say I would take 10 like my step son over the issues we get from his NT sisters, which will become more complicated as they grow older. I think of all the things we will never have to worry about with him- dad, I wrecked the car...dad, i am in jail...dad, suzy is pregnant...and it makes me so happy, yet sad too. bittersweet trade off, but I would never trade for the other- would my step son be who he is without ASD (an (almost) always smiling, brilliant, beautiful inside and out, loving boy)? We will never know, nor do I care to.
    I pray that you and all of your commentors (is that a word?) find strength everyday to get back up.

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  20. Great writing. Hits very close to home. Even though I'm an autism dad, not an autism mom, I can identify with the emotions here.

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  21. I have found that using humor works great with my son....making him laugh redirects him....I look like Iam crazy but I dont care...it works! I sing songs from Barney, Sesame Street etc....make silly faces...he reacts much better when humor is used to redirect him instead of direct confrontation....since he has hit puberty Ive been singing my butt off! lol Its also better for me.

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  22. Hello everyone: May each one of you be blessed with the love of God. As my grand-son was diagnosed with autism and my daughter and son-in-law have been going through a lot. I would like to encourage anyone to check out Andrew Wommack'ministry from Colorado as he has a testimony how the Lord healed completely 2 brothers and the doctors said that they could not find one trace of the sickness called (autism) and said to both parents your child is normal and they cried with happiness. Please do not give up as I am believing for my grand-son that the Lord can do exceedingly and abundantly beyond what I imagine or think because I am not God and that is why I choose to believe that there will always be hope as long as there is life. With love from Canada danielle

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  23. I have cracked hard and cried hard. You have put into words what so many of us cannot while we continue to pick ourselves up and dust ourselves off ...

    Bless you, and continued strength to you.

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