Rights and Other Rants

September 3, 2013.

The day Kelli Stapleton made a decision that she can never take back.

The day she, an advocate and blogger for autism and related issues, decided that she and her autistic daughter Issy would be better of "going to heaven."

I don't go off about these hot button issues often. I try to keep what I write about MY sons, and OUR life, not the choices someone else made, because I am not Kelli, and I do not know what drove her here, to the point she reached. I imagine she was scared, and desperate, and, much like those who are suicidal, felt she had no other choice. And I know she says she regrets what she did, and that she does not feel worthy to beg her daughter's forgiveness.

This post is not about her. Well, it is, but it isn't.

This post is about the condoning of what she tried to do. Let's put her aside, let's put her interviews aside, and let's focus on the bare facts: a mother tried to kill herself and her child.

And there are those who are condoning what she tried to do.

There are those who say it is okay, because Issy is disabled and that makes life hard.

No one is going to argue that it does, indeed, make life hard. No one is going to argue that fact.

But I'm going to argue this: if Issy Stapleton had NOT been disabled, would these people still condone what Kelli did? Would it still be okay?

And the answer to that is NO. The world would be disgusted, outraged, infuriated. There would be no forgiveness for Kelli, no "We understand" for Kelli. There would be mobs calling for justice, for her blood.

But because Issy is autistic, because Issy was aggressive, it's okay? It's okay to deprive her of the basic right to live?

Because Issy has rights, folks. Issy had a right to expect her mother to keep her safe, not hurt her. She had a right to expect that she could safely get in a vehicle with her mother and NOT wake up three days later in the hospital. She had a right to expect that she could fall asleep and wake up perfectly fine, as she has every other day of her life.

Most importantly, Issy has a right to LIVE.

Anyone who says otherwise...I pray you never have a disabled child, because I fear for that child's life if you do.

You who condone what Kelli did, you who decided that Issy does not deserve to live...

Would you condemn my sons, then, to death? Because neither of my sons are exactly "normal." This blog started for K. On Friday, Byrd was diagnosed with autism. Do they not deserve to live? Does Byrd deserve to live, because his only problems are ASD and SPD? Does K deserve to die because his problems run deeper, and are much more complex, and because is not as high functioning as his little brother? Do my sons deserve to die because they are not "normal?" Would you sign their death warrants?

Because by condoning what Kelli did, by saying it was okay because of the disability her daughter lives with, you're saying that MY children, who have the SAME disability, do not deserve to live.

And I am not okay with that.

Just like neurotypical children, Issy, my sons, the other children and adults living with disabilities, DESERVE TO LIVE. They have the RIGHT to live.

And NO ONE, be it a parent or a caregiver or a stranger, has the right to take that life from them.

Button the Bunny: Differences

Every parent who raises more than one child will recognize differences between Child A and Child B. Child A slept better at night, but Child B was sick less often. Child A prefers to be left to their own devices, while Child B wants constant companionship. Child A doesn't like peas, while Child B loves them. So on and so forth.

Now let's turn the tables a little.

The parents bring Child A home from the hospital. Child A was premature, so they expect delays. They do not expect Child A to still not be sleeping through the night at four years old. They do not expect that Child A will not crawl anywhere even close to on time. They do not understand why Child A will not play, or look at them, or respond to their voices, or follow directions, or walk. They expected Child A would do things just a little behind other children the same age. They did not expect to have rounds of tests and diagnostics and appointments to find out why Child A was not doing what Child A was "supposed" to do.

Then the parents bring home Child B. Child B was full-term. Child B sleeps through the night from birth. Child B crawled ahead of schedule, spoke in full sentences ahead of schedule, loves to play, knows their voices, follows directions, walked on time, and did everything they could not get Child A to do. This goes beyond the "expected" differences between siblings.

This is the life of a family whose first-born child is disabled. Every day, I am reminded more and more of how my son's are different.

I'm not going to lie.

I'm not going to tell you we celebrate all their differences. We don't. I don't stand up and cheer every time Byrd uses a spoon, and throw a party when Kai reads a book even though he still hasn't mastered eating with something that isn't his fingers. I encourage them to be themselves, certainly, but I see little point in celebrating these types of differences.

What prompts this? Well, two things: one, my irritation with friends and family who don't grasp that there is little to celebrate about my child's inability to do what his friends and younger brother can do, and two, my children's differences were at an all time high today.

Kai has no imagination. The world confuses him. I asked him today "What's your name?" And he told me all about his doctor appointment. "Yes honey, I know. I was there. Can you tell me what your name is?" And he proceeded to tell me all about his toy boats. "That's great, honey. That still doesn't answer my question. Can you tell me what your name is?" See, we've been working on teaching him his whole name just in case something happens. I spent half an hour on this today-asking him his name just to have him regale me with stories of his day...all of which I knew, because I was there.

Now, from my child who will be two a month from now, I got the following response: "Baby, what's your name?" "Tawyn Michael." That was it. Took less than a minute. (He knows his last name too, for the record.) I dug through my memory box today, too, and found an old stuffed rabbit. Byrd saw it and wanted it. "What will you name him?" "Button!" So. Wren gained a new friend-Button the stuffed rabbit. Kai found a rabbit in the Easter decorations that he wanted. "What will you name him?" "I'm not going to name him, Mom. He's a toy." Kai carried his toy (which, incidentally, he finally agreed to call...Button) with him. Wren insisted on Mommy sewing up a hole in his Button's foot, giving Button hugs and kisses good night, tucking Button in, giving Button a cupcup with Taryn, and singing a song for Button too. I went to check on my sleeping boys, and Kai's Button was tossed carelessly to the floor.

Taryn's is snuggled up with my sleeping baby, held tight by a child for the first time in over twenty years.

I try not to think about all the things that are "different" about my precious first-born son. Sometimes, though, they are so glaringly obvious (to me, at least) that I can't help but feel an ache in my heart.

Taryn and Button the Bunny