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My Buoyant Son

9/19/2016

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He's sinking.

I can see it. I can feel it.

Yet, here I stand watching from the shore, a life preserver at my feet, but, the string not quite long enough to reach him, so I'm helpless to do anything. I yell to him that I want to help, I need to help, but, he tells me I can't. He tells me I don't understand and that he doesn't want my help. "I can manage my own life", he shouts. The life preserver lays on the shore next to me, useless, as if mocking my helplessness as I watch my son struggle. Even if I could toss it to him, even if the rope was long enough, he wants to make it on his own. So I let him.


I watch him go under and pop back up again and again. I'm amazed at his resilience, at how alone he seems out there all by himself and how far under he sometimes goes, yet, he continues to surface time and again. I'm as terrified as I am amazed, but, mostly I just feel helpless at my inability to rescue him.

He wants to blame autism. I get that, and sometimes I do too. After all, he was just walking happily along the shore, autism, although always present, for a while, seemed far away. He was happy. He was eager. Even though change scares him, he was so excited for the start of high school. He was proud to be growing up and moving on. He felt safe and confident...on the surface. Then whoosh, like a rip current lurking in seemingly calm water, he was taken out and under unsuspectingly, and now he is trying to find his way to the surface and safely back to shore.

And I am helpless.


Of course I call out to others asking for help, running up and down the shore trying to find something to help him hang on and make him see that the current will subside and that he will eventually be able to make it safely back to shore, but, he wants no part of my help or anyone else's.

As his mother, it's hard to watch how many times he goes under wanting to rescue him while trying to decipher what took him down in the first place. My number one job is to protect him and make him feel safe, and failing that feels like the current has taken us both under. As much as it hurts to watch him struggle, I am in awe of how he continues to rise up time and time again. I worry each time he goes under that maybe this time, this occasion, will be the one that causes him to sink to the bottom, going deeper than he has gone before. I stand on the shore, a list of what if's goes through my head, as I watch closely and I wait, holding my breath that he will find his way back to the surface again.

And then suddenly, there he is. I see him surface. I see him smile. I hear him script. I know he has made it back.

I can breathe again.


After the end of a very difficult week, it seems that even though he touched bottom, going deeper than he has before, he has risen to the top yet again. I am grateful. I am proud. I am in awe.

I know I will not always be able to rescue him, with my life preserver a stones throw away, which is why he must find his way back to shore on his own, but, that doesn't mean I won't be there waiting to celebrate each and every time he surfaces knowing that when he does, it will be my face he searches for on the shoreline smiling happily that he rose to the top again.

​On his own, just like he wanted.
Picture
Safe on the shore once again.
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To the Grandparents Who Always See Him

9/10/2016

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Dear Grammy and Pappy,

It's National Grandparents Day! Who knew? If it weren't for social media, this day probably would have passed by, unannounced, unnoticed. I'm afraid at times unnoticed may be how you feel, with all of our busy schedules, fast pace life style and the distance between our homes and our visits (insert guilt here).

So, on your very own National Holiday, I wanted to take time to make sure you know that your love, support and acceptance does not go unnoticed by me or your grandchildren, especially one grandchild in particular. Today, on National Grandparents Day, I want to thank you. Not just for being the best grandparents to all your grandchildren but for never treating Ryan differently, never making him feel “less” than any of your other beloved grandkids.

Your support and your unconditional love has not gone unnoticed by your grandson or by your daughter. We have all come so far on this unplanned journey, but, as with everything in my life, I could not have made it here without you.
 
In the early days, when I saw "different", when I obsessed over “different” you saw "same". You pointed out all the things Ryan did so well, instead of focusing on his struggles. When I was so scared, so worried about The A Word and all I could see was AUTISM, you both only ever saw HIM.

When I finally got the courage to say The A Word to you through my hiccupy sobs, you never saw "less". In fact, if anything you saw "more". You saw his amazing memory, his ability to mimic any voice or noise he heard and you saw progress. You always saw progress-more and more progress. Since day one, you always saw and gave "more", even from two hours away.

All the phone calls where I worried I was screwing up, you assured me that my lack of understanding did not equate to my lack of love. In fact, I remember calling you as I laid on the floor in a puddle of tears after a particularly hard day and you told me how proud of me you were. I thought perhaps your hearing was going since clearly I believed I was failing him, but, you knew I was not.

Every time we show up at your home to visit, on your counters, in your refrigerator and in your pantry are his favorite foods. And even though those foods are limited and very, very specific, you have never complained about how “picky” he is and you have never said my most hated phrase, "He will eat when he is hungry". You do not wait for him to be that hungry. You give him what he needs and understand that it's not just about what he wants.

When touch bothered him, you respected this, you never forced kisses or hugs even though every ounce of your grandparent being wanted to scoop him up and reassure him of your love because you understood his body wasn't ready. And in turn, now years later, when his body was ready, he shows his appreciation for your respect and understanding by bowling you over with his big bear hugs that I fear may knock you down and cause you to break a hip.

Whether you were there in person or not, you have always been in the audience watching him grow and flourish as he finally finds his way. And whether I saw the pride as tears streamed down your face or heard it in the crack of your voice over the phone, I know that your love for him matches my own and that the three of us know how blessed we all are to have him in our lives.

All that you give, all that you are, is love and even though we don't say it enough we are so very grateful. The thing that means the most to your grandson and to me is not just your love and acceptance of him, but, your willingness to understand him. To read the books, watch the movies and educate yourself so that you could love him, support him and give him “more” without ever seeing “less”.
 
For all the times he didn’t say it, for all the times I didn’t say it, thank you Grammy and Pappy. Thank you for always seeing HIM and in doing so, filling his world with your love all while seeing the beauty that his world holds for you.

We love you,

Ryan and me
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10 Things I've Learned Loving a Child With Autism

9/8/2016

10 Comments

 
This list could be endless. This list could go on for days and days. This list is comprised of only 10 things because I know, we are a fast paced society who likes short lists. Really, really short lists. So here it is, short, sweet and begging for about 200 more things I've learned loving a child with autism:

  1. Experts know a lot about autism, I know a lot about my child. Autism is not a one size fits all diagnosis, therefore, neither are the various supports and therapies available. If it doesn't look like it fits, it probably doesn't, try something else on for size.
  2. Never say "never" and never believe "never". Ever. My son loves proving that "never" should NEVER be part of his vocabulary or mine.
  3. My son has empathy, he feels the emotions of others. In fact, I believe my son "feels" more than most neurotypical people, but, how he shows his emotions may look different. "Different" does not mean absent.
  4. Most people need educated about autism. The stares, the comments and the unsolicited advice is typically a result of ignorance. I can spend time being offended by the ignorance of others and counting in my head the various ways I could slap them, or I can educate them so the next autistic individual they encounter is better understood. I have chosen to educate and not be charged with assault.
  5. No, he will not "eat when he is hungry". My son has a very specific and limited diet as a result of his sensory sensitivities and his need for routine. It doesn't matter how good Grandma's famous mac and cheese is, it's not going to change his needs, so I won't ever test this theory.
  6. His time, his way. All the wasted time I spent agonizing over his delays or watching other kids wondering if, or when, my son would ever catch up was so pointless. My son always gets it, in his time, in his way.
  7. I worried so much about my future son that there were times I missed my "present son". I would give anything for a do over, to see the boy who was standing in front of me rather than focus and obsess over the boy who was yet to come.
  8. All those scripts, all those echoes and imitations, all those times I said to my son, "I don't want to hear so and so's voice, I want to hear YOU". Unfortunately for me, it was my son talking, I just wasn't listening.
  9. My child is not broken, he does not need to be fixed. He needs to be accepted, understood and loved. And trust me, he is.
  10. Autism is a journey and if you spend too much time watching others traveling a different road, you will miss many wondrous moments on the road before you.
  11. Yeah, I know the title says 10 things, but, I'm slipping in one more. Some days understanding a child with autism is hard, but, loving them is not.
Picture
Loving him comes as easy as breathing.
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