I’ve decided (and I am apparently not the only one given a quick internet search) that having a child with a disability requires a period of grief. Parents of kids with disabilities must “raise the child they have while letting go of the child they’ve dreamed of.” And if you think that sounds terrible or if you are a parent that said “all I want is 10 fingers and 10 toes” - I think you’re full of s**t. We want our kids to be musical, athletic, popular, and/or smart. We want them to avoid drugs, find love, be kind to others, and be happy. All of the above would be the best.
And this post is not about love – love is different – love is the bond that you get that helps you survive parenthood. Because we all love our kids – without that – frankly – no kid would get past the terrible 2’s. We love our kids with disabilities (and we love those without a disability.)
No the grief is about the hopes and dreams and we all have them for our kids and the real challenge of acceptance when their limitations are real and significant. Here's an annotated synapsis:
Stage 1: Denial. There is nothing wrong. He/she’ll grow out of it. Everything’s a phase, right? We need a better school / discipline / structure. It’s not OUR kid with a problem, he/she doesn’t fall into THAT category. It doesn’t apply to us. ((always the initial stage – but feel free to come back here anytime! ))
Stage 2: Bargaining. We need to find the “cause.” Get to the cause, get to the cure. I’m sure it’ll work out fine if we do X, Y, and Z. ((Google – we love you, but honestly, there’s a lot of kooky options out there. A spoonful of olive oil every day – sounds great! It worked for Sally Field! We’ll try it anyway –these are our KIDS we’re talking about for heaven’s sakes! We'd feel worse if we didn't try.))
Stage 3: Anger. Why did this happen to us? It’s not fair. Jealousy of everyone who doesn’t have to deal with X, Y, and Z. It’s not our child’s fault – it’s the other kids. It’s not our child’s fault – it’s ours. Resentment of others and, yes, even sometimes the child. ((nothing can be gained if you’re not honest here… we’re not proud of this phase. You say your Tommy is in the talented and gifted program, star soccer player, and was invited to 15 birthday parties last year …. I’m saying ‘great’ but thinking ‘f-you’))
Stage 4: Depression. Guilt. This problem will never get better. This phase will never pass. How do we possibly plan for the future? Will he or she ever achieve *fill in the blank*? Overwhelmed. ((if we’re smart here we seek out other people to share our experiences with…. we’re not always smart here. Why? Sometimes we’re embarrassed. Sometimes we think you won't understand because you don't have the same problems))
Stage 5: Acceptance. It is what it is. We will do the best that we can and trust that it’s good enough. We have new goals and new ideas and we measure progress based on those. We make changes and we adjust. ((if we’re lucky, we spend a lot of time here. Sometimes we’re lucky. The kids are the luckiest if we make it here. While the semantics of the word acceptance imply a certain sense of ease – it’s not easy to be here))
The most elusive – Stage 5. You think you’re there and then suddenly there is a new challenge, a new day, and you may go back to 4, to 3 or even to 1. Note – never talk with me within 24 hours of an IEP meeting (typically in March) – that’s a way for even the most seasoned parents of kids with disabilities to go straight to 3 or 4. Because sometimes acceptance for a period of time lulls you back into a sense that nothing’s wrong. You’ve revised your plans, made adjustments and it’s going great. And then it’s not – and you grieve all over again.
(End note - if your Johnny is a star soccer player, smart and a whip, and the most well-liked kid ever - I do really want to hear about it and will really be happy for you. Because if I'm in or around phase 3, I'm probably actively avoiding you..... at the very least I'm avoiding facebook. It's like Lake Wobegon in there....)
http://www.livestrong.com/article/14684-stages-of-the-loss-process/
No comments:
Post a Comment