Oh man, he's been challenging lately.
"I'll make you take my canes," he said to me, by the fire pit, when I wouldn't hold them for him. I wanted him to find a safe place to put them. To take responsibility for his extra legs.
For his balance.
His way.
It's all about him right now. No room for sharing or compromise. He whines, pushes, cries, squeezes, kicks, hits, to get his way. Pushing boundaries beyond a mere stretch, to a clear cutting of the forest that limits him.
On the one hand, I want to applaud his independent spirit and will.
On the other, I want to walk away from him and not look back for days. I want to rewind time and choose abstinence.
Of childbearing, that is.
Join my many friends who have chosen not to procreate in order to recreate, travel, and pursue goals that don't involve potty training, sleep, or negotiating sibling feuds. The fortunate ones that don't know the angst of raising another person to inhabit these tumultuous times.
I worry so much about Elias. I worry about Olive too but its different. With Elias the worries run deeper, rivers to streams. Same love, same water, only a different grade of cut.
I worry about the damage to Elias's brain.
If you've been reading for awhile, you know that Elias's ability to communicate "normally" was the last straw I wasn't ready to release. Vision, breath, movement, growth had already been pried from my hand that expected perfect health. I'm a writer. No, it's not fair, not communication too.
But yes, communication too.
(What is fair?)
Elias thinks and processes and sees the world differently. I know this now.
I can't explain it fully yet, as I still sit here and can dream of a boy with CP that "passes" due to his ability to overcome all his obstacles. You know, the micro-preemie-who-fully-catches-up-legend that carries you when you need to be lifted. In a back corner of my mind, I still hold this vision that got me through those early months which led to years when I had to believe he would be "Ok", because I hadn't yet written a different definition for OK.
Elias is different.
And he is OK.
I know this.
But I still worry.
And these days, its less about walking and growing and more about his inability to interact appropriately with is peers. His lack of social skills. Empathy. Understanding of the personal space of others.
His melt-downs and tantrums.
Tonight he pushed his sister down in the tub and laughed about it. He didn't understand why this resulted in a time out in his room. He wasn't sorry.
I hate that I can't leave Elias and Olive alone together for more than a breath or two without worrying that he has her in a headlock or is about to push her off a kitchen chair.
As he did this morning.
Please tell me it will get better. That he will someday see the world beyond his own light.
Because we all know, he has light.
Do you suspect Elias is on the spectrum?
It's a hard question but sent full of support. Hang in there. One day at a time. You can do this.
Posted by: Ghkcole | 02/28/2011 at 12:26 AM
It will get better. It already has in some ways. He can LEARN the cues even if they don't come naturally to him. He is on his own path and has his own light. It will get better. hugs.
Posted by: fleming | 02/28/2011 at 02:17 AM
I don't believe most kids come wired to empathy, sympathy, etc. Mine didn't even with the extra developmental blessing of full term births. They have to learn it. It takes time. Patience. Repetition. I'd bet based on what I've read that he'll get there in his time. I'm no gambler. There is such sweetness in him. You. Your family. Now as to how to have the patience? I can't answer that one!!! But wine and chocolate help....
Posted by: Josie | 02/28/2011 at 04:42 AM
My son IS on the autism spectrum, and also has a mood disorder, and it is exactly the same way. The adrenaline is ALWAYS on, waiting for the other shoe to drop. He touched our daughter inappropriately (4 years ago), and we have been on constant watch since. There is no break, no respite from the constant fear of something, anything happening. He also has a good heart and is endearing, but there is no telling what could set him off or when, and something unthinkable could happen. I only pray she and my 1 year old son can come out on the other side and know their brother is different, and not hate him, and us, for it. I feel your pain, and will say a prayer for you.
Posted by: Beth | 02/28/2011 at 06:35 AM
i agree with the poster who said that kids don't come hard wired for empathy. I don't think most 7 year olds would care and he is developmentally delayed which means he is like a much younger child. Time outs don't serve any purpose if he has no idea what it's about it. The reality is that you have to be vigilant and not leave the 2 of them alone. Is there a room you can gate off so that you put Olivia there and he couldn't get at her?
It is hard to let go of those things we want to hope will even out, where they will catch up.
I do know, I have been there over and over again with my daughter who is now 14.
Posted by: susanna eve | 02/28/2011 at 09:18 AM
My 9yo son is also on the spectrum (PDD-NOS) and BiPolar. He acts impulsively and without thinking of the consequences. We have him on mess and working with psychologist, so it is slowly getting better. For some kids, they learn to have a conscience easily. But for others, it takes patience, time and maybe extra resources. We still keep an eye an him, but my other kids are 10 & 6 and are luckily able to verbalize when he upset and stay out of his way on the bad days.
@Beth--I can pretty much reassure you that your 2 little ones will not hate you or your ds later on. Just be honest with them about what is going on with their older brother and discuss their feelings about him (out of his earshot). We also connect other special-needs families and our 'normal' kids really have bonded which helps.
Posted by: Lee | 02/28/2011 at 10:17 AM
Thanks all for you thoughts. I do often wonder if he is on the spectrum despite multiple doctors and therapists dismissing my concerns. I still wonder. And yet it could also be on overlapping of symptoms of differences in the brain. Elias may have a lot in common with children on the spectrum due to the affected areas of brain. I don't know. When I watch the character Max,a young boy who has been diagnosed with Asperger's, on the show Parenthood, I am often reminded of my son. And yet Elias loves touch and interacting with people and so there are many ways he's different too. I just know that conversations with him aren't quite like conversations with other 3 to 7 year old boys. What he asks about is different. "What is your house number? When you lived in Ct what room did the side door open into?" Oh I don't know. (How many times can I write that?)
As to the gate, we have one for his room and will gate her out so he can play with his train tracks without her destroying them and so we know the two are separated for awhile. It helps. (Though she tries to climb it and has come close.) I was right next to the tub with him when he pushed her down in the bath. In his defense he was trying to keep her from standing up and turning on the water but I'd warned him repeatedly that it was my job to keep her safe and he would have to leave the room if he couldn't listen and he still reached over the side and pushed her down.
Lee, thanks for the siblings reflection. After six years with an only child this "normal" "healthy" sibling thing is all new to me. And i know there will be many conversations ahead.
Beth, prayers right back at you for some moments of peace.
Now back to my wine and chocolate...
Posted by: Christy | 02/28/2011 at 08:40 PM
He is learning, and learning comes in fits and starts for all kids, but even more so for those with developmental disabilities of all stripes. He's starting with the building blocks now: cause and effect (if I do this, you do that); and also learning to get what he wants and needs in the mix of what other people want and need. It's complicated business figuring that all out, and it's perfectly typical that it's hard to hold what other people might be thinking or feeling in mind when you really, really need or want something. What makes it even more complicated for him and for you is that there is another little person who is starting that learning process at the same time. It will get better. I have absolute faith in this.
Thinking of you all as you muddle through a rough patch.
Posted by: bec | 03/02/2011 at 02:58 PM