Chicken Soup for the Soul Children With Special Needs

Great Grandma Ross gave me this particular book a few years before The Middle was actually diagnosed as having autism. While I appreciated it at the time, and told her so, I have never read it. It's kicked around this house, from pillar to post, so to speak, without ever having it's cover parted. Until tonight. I'd dug out a new James Patterson book I'd bought at Costco and hadn't yet read, and got all comfy on the couch with my coffee, and realized it was not the new book after all. And in trying and failing to find the newer James Patterson, I found the Chicken Soup book instead. I blew off the dust and I started to read.

And before I'd even gotten through the acknowledgments, before I'd read word one of what are sure to be heart rending stories, I was weeping. Yep. Weeping. Kinda like I am right now. Quiet but deep weeping. I guess because I own it now. Special Needs Children. It's my life now. My reality. When The Middle was diagnosed with the first few acronyms, The Girlie had already collected a few of her own. I won't go into the personal hell that I lived in when she was first tagged as learning disabled, that's a story for another time; but when The Middle was finally formally diagnosed with autism, it was at long last a place to start from. A place to begin to make reparations, to learn different methods to teach, to try to rewire the thought processes that had gotten jacked up in his blue prints. It was a filthy and rough worn combat boot right to my teeth to read it in black and white, but still, it was a place to jump from here to there. A place to start. A place to begin. A place from which to issue the primordial bloodied battle scream and to take back my son from his own private hell.

When The Girlie was later diagnosed as also being on the spectrum, it wasn't nearly as difficult, but still hard. She didn't have the behavioral issues that made day to day life a navigation through murky treacherous waters like The Middle. And as The Middle was better able to control himself and the raging and the melt downs and the despair started to decrease a bit, and then more so, life got better for everyone. And it continues to get better. There is the quite reasonable expectation that both of The Olders, with therapies and exercises and diligence to cause and effect reasoning and the teaching of life skills, along with plenty of love, despite their diagnosis, will grow into responsible, productive, happy, capable and independent individuals. There is something, many things, to be done to ensure their success and happiness, both now and in their futures.

And then came Jack. Jack's Down syndrome isn't what I was hurting over as I finally opened this book. It was thoughts of The Middle's daily struggles that had my grief and fears spilling out in liquid down my cheeks. But Jack is the one who tipped me over the edge. I don't know that this makes any sense. I can only say that my days of grieving over Jack having Down syndrome are done. Finished. He's just fine. (Don't quote me on that ~ I may have to revisit this idea.)

Let me try to explain it this way: Jack has Down syndrome. He always has. He always will. Nothing I can do, or have failed to do, can influence this fact. With Jack, everything I do with him is going to be beneficial. Every therapy. Every experience. Every hug, kiss and snuggle. It's all up from here. So, I'm kinda off the hook with him. As long as I do my job and do it well, he will be the best that he can be. My toughest job with him will be to outlive him. I cannot die while he lives. I have to be there for him, in how ever much or little he needs me to be. When he's taken his final breath, I can die. And yes, I am quite sure that a broken heart can and will kill me. When I'm 107.

And there's still the huge question with The Middle. Have I/am I doing enough? Is he getting what he needs? Am I/have I been diligent enough? Provided enough? Loved him enough? Played with him enough? Disciplined him enough? Taught him enough? Hugged him enough? Do I/ have I said yes often enough? Held firm to no often enough? For all the stages of his life so far, these are the questions that never go away. And there's no measuring stick at the end of each stage to show me if I've come up short with him. There's no roll of the dice where you pass GO! and collect $200.00. There's no litmus test to say, yeah, we're good. Advance to the next stage of growth and development. There's also no Uh-Oh...better change this. This thing right here. No, not that, THIS! Jack progresses. Not in leaps and bounds, but it's visible progress. With The Middle, all I can cling to is that while he's mastered so few of his own behaviors, while he still struggles daily, sometimes hourly and even minute to minute to reign his own little self in, he is progressing. And at the end of the day, no matter if it's been a great day or a pretty crappy one for the records, we come together at the end for hugs. Snuggles. Bedtime tuck-ins. Sips of water. Just one more kisses. And it's not so much that the questions are still out there. It's more that the answers are still out there. But I need some litmus now. Before it's too late. Before I screw him up. Because~I~Don't~Know. Too many questions. Too many variables. Not enough certainties. Zero answers.

So I read one story in the book so far. Ironically, about a girl with Down syndrome. I will go back and read more. I will. And maybe I'll discover the answer to the question hidden in the wording: Why is it called special when everything about it is so damned hurtful? Because that's where I am right now, sobbing over the keyboard, feeling like the world is on my shoulders to get it right the first time, for them, especially The Middle.

And I am no closer to knowing why Jack having Down syndrome makes The Middle having autism so tragic. He had it before Jack was ever a dream. Maybe it's the juxtaposition. Like I said before...I don't know.