Long back, when I was a young naive parent, whose child was just diagnosed as PDD-NOS….I started the biomed journey. Like all parents on the journey, I dreamt about the end. “Boy, if I get through this, I’m going to have the world’s biggest party! The recovery party!” I even bought a nice bottle of Scotch just for that planned special occasion. Every year, I would say, “This is the year! This is the year I do it! Get ready for the party!”. And of course that went on for 8 years. I realized….it doesn’t work like that. You try to make progress…promise yourself that you see to it, that there are gains every 6 months. And eventually the sum of all the gains will result into your final goal.
I’ve been at it for eight years. It’s been a long time. I’m not even sure I know how to do anything else. My son is doing well…perhaps recovered by many people’s definition. I’m guessing he qualifies for more of a developmental delay status than autism. I don’t care what they call it. I’m not done yet. He’s going to go to college and be an engineer like his father.
My friend, Ana just asked me at the AustimOne conference, “What are you going to do when the kid is recovered?”
I said, “Well, the whole recovery process is so slow going and on-going, that I don’t think there will be a fist pumping day when it all clicks and I yell YES!! He’s recovered!”
She said, “Well, there’s going to be day when you’re done.”
I said that “Yes, when he has no IEP, and get A’s & B’s at school on his own.”
So she says, “How are you going to commemorate the occasion? You must have some plan, ie Recovery Party?”
I said, “Ah….now I know what you mean. Come to think of it, I do have a plan. I have a recovery bottle. It’s a 25 year old bottle of Scotch. No particular attachment to this bottle. But I designated this as the recovery bottle.
It will take a lot before I ever consider opening it.
But the day I open it…..you see, its the day I finally admit it’s all over.
My hands will tremble when I reach for it….
I will shake just trying to open it….
And pour it….
And I just want to be alone when it happens.
Probably find a lonely spot in our dimly lit unfinished basement….
Sit on the floor slumped against the concrete wall with my bottle…..
I’ll have a photo of my father with me….
A baby pic of my son….
And I’ll tell my father that I did it…..
It’s over.
Your favorite grandson is ok.”
And that will be my recovery party.
~Count
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I loved reading this post! Thank you! I was alone after my then 5 year old son’s therapy team left the house. It was that moment I realized it had really happened. There was nothing left to teach him, and our fading program had been successful. I celebrated alone by just sitting there. I called my close autism mom friends to share the news. Only they could truly get it.
Five years later, my mother-in-law felt comfortable enough to talk about it. It is 9 years later now, and my son is going to high school! We will never forget where we started and grateful every day.
In health and in hope, Ashley
Count u rock.
I wonder if that day will arrive at my household? It has been a loooong twelve years, so far…I wonder if there will even be a house left after the voracious Autism monster is done chewing up our finances and decimating our life plans? I hope to see that day, because I can’t die before it happens and leave her at-risk. When (if) it arrives, I plan to build a funeral pyre of the mountain of therapy notes, therapeutic “toys,” volumnous IEPs (she has her own file drawer at the School District), and myriad slips of paper with names of the doctors who caused my daughter’s descent into Autism, those who did nothing to help her when she was in-pain, and in-need of help, and those who chose to jeer and point fingers, rather than listen to those who made a real difference; while the bonfire of the vane rages, I will build a small shrine of thanks featuring the community who helped my through (grammyAnnie, you’ve been there with me, the whole way, despite your web-name change), the doctors who listened, researched and helped us overcome, my family, our amazing therapists, and those in the world-at-large who stopped to THINK. I will meditate on the shrine and send my sincere wishes for our world to RECOVER alongside of us. And then, I will start to actually train for the half-Ironman races I run and my shirt won’t bear my current slogan, “Last one is is the Autsim mom…”
There IS “recovery in a bottle” it’s in 2 actually!
ALA and DMSA!
ALA & DMSA + Cutler Chelation=complete recovery
Life is so much better! I have to remind myself daily that the other shoe won’t be dropping! We survived!
Nobody feels the way I feel the way the people on this board/book/page do (and for that I thank all you Thinking Moms (and dads)). I have been planning our Recovery Party in my mind for five years, but never breathed a word of my swirling plans or intentions to anyone. It is my secret goal. The guest list keeps changing (increasing) and the venue keeps moving, but it’s always there in my mind waiting to be brought to reality. But then I get hit with moments of isolation in this need to celebrate. I sometimes feel the need to mark the “moment” with just my husband who has been my true teammate since the first words of “your son has autism” came out of the doctor’s mouth. I was so moved by The Count’s plan with the bottle in the basement. I don’t know who I would say “We did it” to except the man who will, no doubt, be sitting next to me. We haven’t had the support we so desperately needed through this, but we’ve had each other. Perhaps The Count has the right idea. Maybe I don’t need the big celebration that has been playing in my head all these years. I might just need a quiet spot, overlooking the mountains, a good bottle and our best glasses and whisper to the heavens “We did it…..we damn well did it.”
Beautiful..u ladys make
me cry
As Cobra said: “This is profound!”. The end really got to me too.
Love this post! Thank you for sharing your heart and the end goal.
I’ve thought a lot about this too. We are not 100% there yet but feel we are getting there.
I think about people that survive wars or warriors returning home. They are exhausted, don’t have much but their lives and once they reach home, they are happy to be there. But they don’t jump up and down a lot, they just sit. That’s what I see myself doing…just sitting. Bring on the sitting!
My husband and I decided that we will take a Disney Cruise as a family to celebrate and we will renew our vows. Praying its going to happen soon!
oh count, this is profound. thank you for sharing.
I have 2 on the Spectrum. Beautifully written and all I can say is I so get it.
We will be in spirit at recovery parties. I think if we share our recovery journey, the good, bad and ugly with others, then it helps others, and with our own PTSD too. Long live the Count.
The day will come… soon and we will all be with you in spirit.
Love this!
I have recovered my daughter. About 6 months ago, I had my recovery moment. I had caught on to my daughters delays at 1 year old and at 18 months, after a total of perhaps 18 vaccinations all in all, I began diet changes and biomedical. She is now a few months shy of five years old. She had been at home with me until she turned 4 years old, at which point she qualified for pre-kindergarden. I put her into a mainstream school, without a word of her past and only with a caveaot of allergies understandable to teachers (gf/cf/sf). She started a little bumpy but within 6 weeks she was on track. In december of 2012, we moved, but just as we were moving I opened up to her pre-k teachers and showed them all her before, during regression, and recovery photos and videos. They couldnt believe it. That was the tipping point. Now 6 months later, in a new country, new school, new language, she is thriving. But, here is my point.. once you start to let go of all the stress, it takes a lot of time for you the parents to recover. Its PTSD, so I am now in this phase of learning how to let go of the constant fears, worries, and as I have been peeling these layers off, my daughter has made even more strides ahead and so has the rest of our family. I know that I am not yet completely recovered on all levels (emotional, physical, spiritual but I am working on it! ). This means, taking all I have learned biomedically and applying it to me ie.. to get adrenal levels back to normal, exercising a lot more, and tapping into who I have become after all this and who I will be, and of course paying it back to new mothers, newly diagnosed etc.
Congrats and hope you recover soon too. I think in some ways we take longer but like all loses we learn how to live with it and hopefully get happier 🙂
This is so true.the emotional aftermath.the.anger pain manyof us moms feel will take years to recoverlong after our kids recover. So many parents also have been persecuted along the way. Lot of broken warriors will be after the journey..i think i may cry non stop for many years lo g after..means so much to be part of to hear other moms goin thru similar
OMG what u said…it is so spot on! We r in the same place. It took my kid a lil longer & he is a boy….but what u wrote here, I could’ve written myself. It is exactly how I feel!! Its amazing-I’m not worried abt my son anymore…..myself? That’s another story. Man, do I have issues now….PTSD is right!
I love this! I’m on my 6th year and I suspect a mito dysfunction as well which complicates things. Having enough energy to do things is so important. I am bound and determined that my daughter WILL graduate from high school. She has 1 more year. We will be traveling this week to an intensive 3D learning center to accomplish that goal. We fire more neurons through movement!!! The toxic insult from the Vaccines disrupted this. Our governments vaccination program is purposefully dumbing down our population.
Sobbing. Because for many of us, recovery is, at the core, a solitary affair. Don’t get me wrong, the support, the advice, the knowledge from the other autism parents has been invaluable. It would be impossible to be on this road without the beautiful men and women who are also fighting this fight. But the weight of the responsibility, the agony and fear around autism. The anguish of all those lost years. Searing sensations etched on the most private parts of the self. Count, I too will celebrate alone. Although, I have to say, I’m going to pick a beach, not the basement! So make your first few celebrations however you want and then take yourself somewhere magical and ENJOY. We will all be with you in sprit. Take us with you, even as you sit there by yourself.
Wow, Count ~ the end of this really got me. It is a long journey and some of our loved ones may be watching their favorites from above! It also shows how once everything is said and done, a modest commemoration is all we need.
Crying
Just Wondering…
Gut Bacteria Play Key Role In Vaccination
http://www.medicalnewstoday.com/releases/261575.php
wouldn’t this study seem to support the connection to Gut/Gut Problems in Autism?
If Gut Bacteria are activated by vaccination, there must be a possibility of Over Activation?