Grieving

When a friend and colleague, with a lot of Special Education background, realized that I had taken a leave of absence from work, she said to me, "It can be very stressful to receive a diagnosis of ASD, so that's understandable for sure." I replied, "What? No! I love Asperger's! (and I wholeheartedly meant that and still do) But I have some other stuff going on in my life right now as well..." Retrospect says to me that, although I had had suspicions of autism for over a year, I was in one of those stages of grief that people talk about.

I have been grieving. There. I said it. I am working through the grief. It's not easy to hear that your child has autism. I even had a bit of a headstart, suspecting ASD at least a year ago. My lovely and supportive colleagues at work will remember that day. To have the grief perspective now, explains a lot of my personal challenges over the last year. My hope is that people will also reflect and forgive me for for not being me. This is not to say that I have any guilt. I did the best I could, and continue to do the best I can. But doesn't it also lend perspective to accepting people's differences...? Something to think about... I will get back to being me again and when I do, those know me will welcome me back.

According to my Google searches :), the stages associated with grieving a diagnosis for your child look somewhat like this:

Shock
Parents may not accept the diagnosis and look for another doctor to tell them something different.

I think I was in shock that day last September, a year before the diagnosis, but I've never looked for another doctor to give me a different answer. My experience in Special Education has given me reasonable perspective, and put that together with the number of assessments we did over the last year and a half, there are too many professionals who agree that a diagnosis is accurate. Likely, I experienced it again the day I got that piece of paper with the word "Asperger Syndrome" on it, signed by the doctor, dated August 14, 2012.

Sadness/Grief
Parents mourn the hopes and dreams they had for their child and will experience periods of great sadness.

Can I get a "hell yeah!". I have good days and bad days. Some days I feel hopeful. Some days I feel relief; especially when the teachers tell me what a great day Sienna had at school, and I see that reflected at home. However, some days I feel very sad. Those are the days I don't want to leave the house and I don't wish to talk to anyone. Or the opposite. I want to get the heck out of my house, avoid all the housework, and talk my friend's ears off about all my "problems". Thank goodness for my friends... As parents, all we ever want for our children is an easy life. No bumps. No hardships. No sadness. And this one is out of my control.

Anger
Parents may direct anger at those closest to them and may feel resentment toward people with typical children. They may overreact at small things, snap at people, and possibly yell.

I'm not going to lie. I have felt resentment knowing that our family will always have this "extra" challenge in our lives that others don't have. But I'm beginning to come to terms with that, knowing that everyone will have challenges in their lives. This one is ours. And I'll be the first to admit, my diplomacy is not getting from my brain to my mouth on occasion! :)

Denial
Parents may refuse to believe this is happening to their child.

I think my denial stage has been to keep myself busy. I have spent hours upon hours of filling out paperwork, calling community agencies, keeping in touch with the school (poor teachers!! LOL), and setting our house up appropriately for our daughter. Now that I have a handle on that stuff, I have been able to move in and out of the other stages...

Loneliness
Parents may feel they don't have time to contact friends or family, or that if reached out to, they wouldn't understand or be supportive.

For sure I have felt this way. But it's really interesting how people "come out of the woodwork" with support when they know you're hurting. I was able to keep some of my girl's nights out here and there but totally dropped the yoga unfortunately. I think everyone however, with two young children, goes through this at times. For us, the new school transition caused health concerns with Sienna and it took both parents to be home to ensure she was okay (along with our son), not to mention other significant stressors going on at the same time. So, I'm beginning to organize my life somewhat and trying to figure out how to find that "me" time in our busy lives... I recognize that I have to take care of myself in order to be emotionally available to my family. That is where my work begins. Back to yoga I go!

Acceptance
Parents will begin to accept the diagnosis and accept autism. This will allow them to learn about autism and begin to advocate for their child.

I am thankful for the very basic knowledge I had of autism prior to receiving the diagnosis. It is nothing, however, compared to what we have still to learn about our own child. We will always be educating ourselves, trying new things, figuring out what works, and reading more. Parenting a young child is something we've never done before. Parenting a child with autism is something we've never done before. The learning curves are steep and we are always looking for new ways to support our children.

It's important AND healthy to go through all these stages. And personally, I have to remind myself that I may revisit these feelings from time to time... and that's okay.

There is a really great web site called Autism Speaks which also has an iPhone app that I'm in LOVE with!! There is great information here including a blog, information about family services, scientific news related to autism, how advocacy and action are supporting autism, news, and videos. I'm sure I will be sharing and posting videos and articles there in the future. In the meantime, check it out!!