It's the one year anniversary of my first post here at Hopeful Parents.
That post, The Wheels on the Bus, was about my first public acceptance of my son's special needs. I wrote about getting him off the van after his summer school program, and how it helped me come to terms with his autism spectrum diagnosis. While never in denial about it inside my house, the van rides marked my first time showing the world that my son was "different" than the other kids on our block.
And now, one year later, I'm back on that road again. This time with my youngest. My two year old was diagnosed on the spectrum last week.
But this time, the acceptance isn't coming as easily.
In her book, The Five Stages of Grief, Elisabeth Kubler-Ross described the stages that people move through as they cope with loss and grief. She lists the stages as denial, anger, bargaining, depression and acceptance.
When my middle son was diagnosed back in December 2009, I knew something was "off". He needed help. We needed help. The diagnosis saved us, confirming for us that every missed milestone was as a result of this disorder, and not because of bad parenting or bad behavior. The diagnosis "fit".
I don't remember feeling grief at all. It was more like relief.
This time I'm having trouble. I'm firmly planted in stage one: denial.
I still don't see the red flags cited by the doctors in their evaluation. I don't see the limited play skills, or the reduced eye contact. I don't see the inability to follow through on an activity.
I don't see how his refusal to sing "Happy Birthday" to a play-doh birthday cake is a sign of rigidity when he sings just fine at home to a Lego birthday cake. I don't understand why it's a concern that he shut down after two hours of evaluators taking away a new toy every 30 seconds. I don't see how a doctor can tell me that this is just the way my son is after spending an hour looking at him through a one-way mirror.
I still can't believe it. And it doesn't help that the people who know my son are just as shocked as I am.
I know what I'm supposed to do. I know what phone calls to make to get the early intervention therapy started, I know who to call at the preschool to get things ready for his IEP meeting when he's three. I've informed his speech therapist and the school district about what services we'll need. I've told friends and family.
This road to acceptance should look familiar to me. But it's paved very differently this time around. The first time, the diagnosis gave me the ability to explain my middle son's behaviors and difficulties. I hit the ground running, ready to get him anything and everything he needed.
But I'm not running this time. I can't even take that step out of denial.
A friend sent me this quote: “You never get good at grief. Just because you have done it often doesn’t make you good at it."
I have lived through grief before. I will live through this again.
And I know at some point I'll get to acceptance. I'll just be taking baby steps this time.
"I always waste my time just wondering
What the next man thinks of me
I'll never do exactly what I want
And I'll sculpt my life for your acceptance" - Road to Acceptance by Green Day
Alysia Butler is a stay at home mom to three boys, two who are now diagnosed with autism spectrum disorder. When she's not filling out paperwork or making therapy appointments, she writes about her kids and other things at Try Defying Gravity and on twitter at @trydefyinggrav.
This is a terribly hard post to respond to, but I feel so deeply in my core that I must. I have no words of wisdom for you, no shiny quotes, nor tidbits of inspiration to share. All I have is an ear and a keyboard, but perhaps that is enough. I know that you will work through this in your time and in your space. I cannot imagine how hard it must be, but I so get it. I'm so sorry. Please know that you are not alone. I will be thinking of you often over the coming days, weeks, and months as you begin to delve into the emotion that comes with this 2nd diagnosis. *hugs*ReplyDelete
You know, it is true that you know your boy best, and a short assessment is never going to trump that. Some kids just don't test well, and that whole process is demanding and disturbing. I was always grateful that I was allowed to stay in the room with Cubby during the sibling study, because his separation anxiety is so strong that all they would see was a screaming toddler. We put these kids through a lot, and they're only babies at 2. There is a whole lot of time to develop.ReplyDelete
Now, you could go for a second opinion, or you could wait a year and have him reevaluated. Either way, he is in the very best of hands, no matter what label is placed on him.
Thank you for a year of beautiful posts. You truly epitomize what it means to be a hopeful parent- even when weighed down by grief.
I too wish I had some advice, encouragement, or a shiny quote for you (thanks for that one, Aimee)... but nothing. I know how it feels to get something back from a doctor that just doesn't sit well -- because you're the parent... you know that child. You know there is SOMETHING going on and what that "professional" says just doesn't cut it.ReplyDelete
The comfort I give myself is that I continue to give Little Miss what she needs -- regardless of the alphabet-soup diagnosis that just doesn't describe her. She gets her therapies. She gets all the love I have. And, she is still my Little Miss. That's all that matters.
I think your dear friend, Spectrummy Mummy, said it so perfectly that I will simply say "ditto" and wish you a happy Hopeful-versary, my friend.ReplyDelete
Is it denial - if you are logically denying it ?ReplyDelete
here is what is different about denial and what you are talking
you actually know what autism is
Loved your post and your writing and I am sending you lots of positive vibes that your little one will blossom and bloom
I know you know your school only has to consider his medical diagnosis, and that they will do their own evaluation. "Everyone" seems to want to diagnose autism right now. (I guess it's "trendy") So many things "look" like an ASD in a two-year-old. My point (and I do have one LOL) is that maybe you're doing the right thing. Keep on with the speech. Add early intervention if you think it's the thing to do...if not, don't! If you're getting appropriate therapy who cares what you call "it". And at your next eval, things might be different. Hang in there, Alysia. :)ReplyDelete
Oh Alysia, I am so sorry to hear you are having such a hard time. Grief is a tricky foe. If you need to talk I am only a FB message or a text away (will send you the number on FB)ReplyDelete