What do you do on the day of your child’s diagnosis? Is it a day of reflection, a day of tears (happy or sad) or is it just another day.
When Austin was diagnosed 6 years ago today, June 15, 2004, I never cried. Not once. I cried when a co worker of Ed’s child was diagnosed a year later, because I worried what she was walking into with our district.
I have cried over success and failure of friends children, but until this year I don’t think I have actually cried for me, for the Primer’s and for our losses and gains from Autism.
Some how I think this year is different. I have been weepy for the last few weeks. Not all the tears were sad and not all were happy. I have just been a mix of emotions lately. I do fear I have gone soft. SHHHH don’t tell anyone, it’s our little secret!!!!
I have cried every time I think about our Special Ed Director, Bruce Kramer, leaving Carlsbad Unified, I cry because I know what a difference he has made for Austin, and I cry because I worry about who is coming to replace him. Will it be like it was at the beginning where I had to fight for everything or will our district bring another Autism knowledgeable person in to continue Bruce’s work?
I have cried because an awesome warrior mom, Christina Martynec, who I met at the Green Our Vaccine Rally in June of 2008 and now know personally had her child undiagnosed a few weeks ago.
When Austin was diagnosed 6 years ago today, June 15, 2004, I never cried. Not once. I cried when a co worker of Ed’s child was diagnosed a year later, because I worried what she was walking into with our district.
I have cried over success and failure of friends children, but until this year I don’t think I have actually cried for me, for the Primer’s and for our losses and gains from Autism.
Some how I think this year is different. I have been weepy for the last few weeks. Not all the tears were sad and not all were happy. I have just been a mix of emotions lately. I do fear I have gone soft. SHHHH don’t tell anyone, it’s our little secret!!!!
I have cried every time I think about our Special Ed Director, Bruce Kramer, leaving Carlsbad Unified, I cry because I know what a difference he has made for Austin, and I cry because I worry about who is coming to replace him. Will it be like it was at the beginning where I had to fight for everything or will our district bring another Autism knowledgeable person in to continue Bruce’s work?
I have cried because an awesome warrior mom, Christina Martynec, who I met at the Green Our Vaccine Rally in June of 2008 and now know personally had her child undiagnosed a few weeks ago.
I have cried over Austin leaving parrell play and actually seeking kids out to play with. He may not always succeed, but he is trying. So thankful he has kids who want to help him be successful. Not just the kids at school, but kids like Paige and Julie. Tag seems to be a universal game every child can play even the non verbal ones!!!
Some how all these tears seem different then when I cried for Ed’s co worker all those years ago. Those tears were angry tears. These tears are tears for all the emotions I have felt over the last 6 years. They represent the ups and downs I have gone through. They represent my fears of the future and how I am unsure my kid will ever be recovered. They represent my thankfulness of how far we have come. They represent the things I know that I have changed and made better for the person who walks into Autism after me. They represent the things I know I still have to fight in the future.
Today not only do I reflect on my own child’s diagnosis, I reflect on those who came before me and paved the way for me and others like me. Thank you Lisa Ackerman, thank you Becky Estepp, thank you Katie Wright, thank you Dana’s view, thank you Karen L. DeFelice, thank you Dr. Wakefield, Dr. McCandless, thank you all DAN doctors who have stepped up and thank you all who I can’t mention who made a difference the for me and many others who follow us. I hope even if I change the world I live in, that I some day have the right to stand next you all, because you all changed the world for me, Austin and the entire Primer Family. We don’t have the recovered kid, but we have a completely different kid then we had 6 years ago today.
PITAup, you may not be able to change the world, but you have the ability to change the world you live in!! If it was not for someone like you, I would have had to gone home and done what our Kaiser, go home and don’t “thrive”, neurologist said and learned to live with Autism. Instead, I am today on our 6th anniversary of our Autism diagnosis, I get to reflect on the ups and down, but I know my life is better because of parents like me.
Thank you also to all that I call PITA, without you I could not get up every day and do what I do. You give me strength and courage to continue to fight. Love you all!!!
Some how all these tears seem different then when I cried for Ed’s co worker all those years ago. Those tears were angry tears. These tears are tears for all the emotions I have felt over the last 6 years. They represent the ups and downs I have gone through. They represent my fears of the future and how I am unsure my kid will ever be recovered. They represent my thankfulness of how far we have come. They represent the things I know that I have changed and made better for the person who walks into Autism after me. They represent the things I know I still have to fight in the future.
Today not only do I reflect on my own child’s diagnosis, I reflect on those who came before me and paved the way for me and others like me. Thank you Lisa Ackerman, thank you Becky Estepp, thank you Katie Wright, thank you Dana’s view, thank you Karen L. DeFelice, thank you Dr. Wakefield, Dr. McCandless, thank you all DAN doctors who have stepped up and thank you all who I can’t mention who made a difference the for me and many others who follow us. I hope even if I change the world I live in, that I some day have the right to stand next you all, because you all changed the world for me, Austin and the entire Primer Family. We don’t have the recovered kid, but we have a completely different kid then we had 6 years ago today.
PITAup, you may not be able to change the world, but you have the ability to change the world you live in!! If it was not for someone like you, I would have had to gone home and done what our Kaiser, go home and don’t “thrive”, neurologist said and learned to live with Autism. Instead, I am today on our 6th anniversary of our Autism diagnosis, I get to reflect on the ups and down, but I know my life is better because of parents like me.
Thank you also to all that I call PITA, without you I could not get up every day and do what I do. You give me strength and courage to continue to fight. Love you all!!!
We love you too Shannon!
ReplyDelete<3 I remember the day Kaelyn was diagnosed like it as yesterday. I already knew- but hearing the words "I'm sorry, your daughter has Autism, mourn the loss of your hopes and dreams, there is nothing you can do" (Word for word, this is how I was told). I did not cry. I responded that I disagreed I couldn't help her and I would find a way.
ReplyDeleteNOT coincidentally at the same time, my sister saw Jenny on Oprah talking about the gluten and casein free diet and she told me about it. We started the next day. It was never a choice- it was what we were supposed to do. Seeing IMMEDIATE progress, we knew we were on the right track.
Through the years- I have shed tears for what could have been. I sometimes hear the words of the doctor in my mind and while I silently rage at her for her choice of words, I also thank her- telling me there was no hope gave me the power to prove her wrong- and as it turned out- a LOT of other people. Kaelyn was UNDIAGNOSED with Autism last month and given a "provisional" diagnosis of PDD-NOS because the psychiatrist feels that in the next year, in kindergarten, Kaelyn will make such progress that even the PDD-NOS diagnosis will no longer fit.
2 years ago, my daughter didn't seem to hear or see us. She was trapped inside her own world. We did not exist to her (so it appeared). Now, she is a talkative, affectionate, amazingly brilliant little girl. She fought her way back from hell with the aide of a diet change. My greatest wish is that the diets worked for all.
Kudos to you mama, for keeping this going, for being a voice in the madness. We all hear you <3
Love you girl. We will cry together not only for our kids but all the kids who will recover. It's nice to know you're on my side.
ReplyDeletegreat write up Shannon.
ReplyDeleteI don't do anything bc I have no idea when it was. Timmy has been "like this since birth". I know he got his official 3 years ago and I could look up the date on the neuro sheet but i was kind of relieved bc he finally had a diagnosis. But I remember days like when his PT of 3 years had tears welling in her eyes bc she knew... See More it wasn't "just a delay" - that one made me cry bc it was so different than what anyone had told me -- oh he will catch up, he will grow out of it, he is just a preemie. I remember the last day he ever spoke; he said "up uppy up up" to my Dad. I wasn't there. I missed his last words. I hope I am there for his next first. That is what I care about most.
Just another day. Heck I would have to look it up just to know when it was. It wasnt a big deal for me maybe because there are others with problems including aspergers in my family. Dont get me wrong, my sons have different therapies but they are wonderful, smart kids.
ReplyDeleteI am tears now reading this! I love what you wrote, so very true Shannon!
ReplyDelete