WORKING WITH GRIEF

I was grocery shopping yesterday (fantastic feat when you forget you have ALL your soccer equipment in the back of your van when you go to load your groceries), and in the check-out, I saw the newest "People" magazine. One of the featured articles was Holly Robinson Peete discussing her son's autism.

Any time I see an article on a magazine, or on the internet about autism, I always feel compelled to read it. Well I mean minus the research studies (I'm sure all autism parents read those when they publish). But it's more the social stories I'm talking about. Reading about other people in a similar situation as you, talking about their child and their struggles. So you know I bought it and later in the afternoon, sat on my couch and read it. I have to say this: it amazes me how every parent seems to go through the same experience. It doesn't matter who you are, whether you are just the average Joe or a famous celebrity. We all breakdown to the same place, and go through the same emotions: shock, denial, anger... That immediately makes me think of the five stages of grief by Elizabeth Kubler-Ross. For those of you not familiar with this, it is the psychological explanation of the emotional stages when dealing with grief over death. It's always interested me how closely the two scenarios seem to command the same stages of dealing with grief. So my question is: is dealing with the "loss" of your child to autism the same as dealing with the grief of death. Yes I realize this is not a comparison. In autism, you still have your child (this in no way minimizes those who have actually lost a child). I'm specifically talking about the grieving process; not the situation that triggers it. And what I have found is most families I read about seem to go through this process.

When Kierra was first diagnosed, I was expecting it. I knew in the back of my mind months before we even started the evaluation process that this would be the verdict. I tried to emotionally prepare myself as best I could. Still, I was still semi-floored when I skipped through the evaluation papers to the very last page where it said, "Kierra is diagnosed with Austism Spectrum Disorder, mild to moderate range." Maybe it was seeing it in print that made it real. But there it finally was. Of course as soon as everyone left I had a major breakdown. Jarrett strangely went back to work (I think he never truly believed that would be what they told us). And over the next year or so things changed a lot. I was a lot more depressed, upset, angry - trying to bargain with God to give me back my child. And finally I came to accept that Kierra was who she was. However, I did for a long time, mourn the child that I thought I had.

As a parent of autism, it is a hard thing to accept to have a notion that your child is perfect in every way, and to have that rug pulled out from under you. It's difficult to see your baby born and reach all her milestones. To see her thrive and begin to talk. Ah the talking... you know every parent is thrilled to hear first words. I had no clue that I would have to fight to get them back a year later. It is heartbreaking to watch your child slip away and not be able to do anything about it. Such is the disorder: it is cruel.

Don't get me wrong, I accept my daughter for who she is. She is still my sweet girl, and I love her with all my heart. But I'd be a complete liar if I didn't say I sometimes wonder what she would be like without Autism. What stories would she sit and tell me? Who would be her best friend? What's her favorite color? All the things I know about Jenna and Karis are a mystery to me with Kierra. It is hard to live with someone, to love them, and not know entirely what they are all about. I'd also be a liar if I never admitted I grieved for a life for Kierra that she'll never have. That sounds harsh but it's not to undermine her quality of life in any way. I mean I mourn for her ability to live her life simply and without the problems of her disorder getting in her way. At the tender age of 4 (five in a few weeks), I already see the hardships that lay in front of her. Add that with the normal life struggles - it seems unfair. I wish for her the same things in life as my other two daughters: love, happiness, contentment. Those don't seem unreasonable things to ask for.

To answer my own question, parents of autism definately grieve for the loss of their autistic child. It is a process of dealing and coming to terms with a situation we didn't count on. However, it proves to us that our love for our children is boundless. That we struggle through our feelings and rise to the occassion to completely support our children and do what we have to. To be honest, it's not hard to give it your all when you think about all that you give back to your child. It's not a sacrifice when you find something in yourself you never knew you have. Unlimited love, devotion and knowing that no matter what, you would never give up on your kid. Being the parent of autism is a hard thing no doubt about it, but it definately makes you aware of the kind of person you really are. Through all the grief, that is the greatest reward.