The Recovery Room
By Julie Obradovic
I haven’t written a lot this year. Frankly, I haven’t had a whole lot of time. Between grad school, a new full time teaching position, and a family to take care of, writing has had to take a back seat.
But truth be told, there’s more to it than that.
For starters, I often feel like I’ve run out of anything new to say. I’ve been writing about Autism for almost eight years.
Furthermore, I’m a sensitive soul. Writing about it takes a thick skin, and honestly, sometimes I just want to cover up.
But there’s even more than that; sometimes I just don’t know where I fit in all of this anymore.
The thing is, I live in between two worlds. My daughter has recovered from Autism, yes. She does not qualify for a diagnosis any longer. And yet, my daughter has not totally escaped the residual effects of what it did to her. We still deal with our fair share of social and academic issues; medical and self care concerns, and more.
Make no mistake; I’m not complaining, just explaining.
It’s bizarre, really, one foot in the non-affected world, one foot in the affected. I am never completely in one or the other. A strange state of simultaneous gratitude, relief, sadness, guilt, obligation, responsibility, anger, panic, elation, fear, and exhaustion lives inside me.
On any given day I am relating to the crises so many of my friends are experiencing, trying my best to help them, and then closing my lap top and going to have a conversation with my daughter about her day.
And so it has been with great caution I have tried to share our experience. On the one hand, I want everyone to know recovery is possible! We are living proof! It’s so important my child’s experience make a difference. I also want to share our hardships and lean on my friends.
But on the other hand, those problems pale, I mean pale, in comparison to what some are dealing with. It gives me great pause. Am I being insensitive by sharing my heartache and problems? Can they even compare?
All I know is I still need this forum. I can’t imagine my life without this group of people. And I can’t imagine there aren’t many of you reading this who can’t relate.
Your child has also made great strides; perhaps they too have recovered. And yet, you’ll never be the same. Your life will never be one that isn’t or wasn’t affected by Autism. You too need the support of a group of people that in some ways you can’t relate to anymore. And they need you, too.
As I have struggled with writing for the past year, I have finally realized that it’s not writing that’s been the problem. It’s been figuring out what to write about. Now I know.
Moving forward, The Recovery Room will be a column here on Age of Autism. I’ll write about living between the two worlds, easing from one into the other, and all of the problems, issues, heartaches, transitions, and celebrations that go along with it.
I’ll highlight the lives of children who have proven recovery is possible and help give direction and hope to parents and loved ones who still want to make a difference for those on their way. I’ll give a voice to the parents and children who live a life most of the world denies is possible. I’ll do all of this and more.
Join me, won’t you? My greatest wish is that we’ll all meet in the recovery room some day.
Julie Obradovic is a Contributing Editor to Age of Autism.
"And yet, my daughter has not totally escaped the residual effects of what it [They] did to her."
If I had a child on the ASD recovered or not I would consult with a good trusted autism recovery specialist on the cheating powers of cilantro. They say to do this with young children as special protocols/testing may be required. For myself I having been eating at least two BUNCHES of cilantro/week, often more, for twenty years.
Not only will the cilantro pull out mercury but also aluminum, lead and a few other things that can affect neurons and other body parts.
Cilantro Protocol
Cilantro is one of the few known foods that removes mercury, aluminum, lead and other heavy metals from your brain and Central Nervous System as well as the rest of your body. Be sure to eat at least a bunch cilantro at least each and every week.
“We found that cilantro accelerated the elimination mercury, lead and aluminum thru the urine. If given before mercury filling removal procedure the mercury can be eliminated in 2 to 3 weeks by giving cilantro four times a day.” Omura et al 1995
"A generous sprinkling of fresh coriander helps to make up for the lack of green leafy stuff in our diets. It contains good levels of beta carotene and vitamin C, two of the antioxidants thought to protect against age-related disease, and measures up pretty well against other antioxidant-rich fruit and veg.” Life Extension, Note coriander is the dried seed of the cilantro plant
"Cilantro is a power-packed flavor enhancer that contains an eye-popping amount of phytonutrients including borneol, carvone, camphor, elemol, geraniol, and linalool among the most prominent. It also contains popular flavonoids such as quercetin and apigein. Cilantro also contains active phenolic compounds and is nutritionally dense in dietary fiber, manganese, iron and magnesium." Life Extension
"A Japanese investigator Yoshiaki Omura has made the revolutionary discovery that cilantro can mobilize mercury and other toxic metals from the central nervous system if large enough amounts are consumed daily. Dried cilantro does not work." Sally Fallon
Posted by: Lou | December 24, 2012 at 05:59 PM
I think it's a great idea to write about children that have recovered. I, too, have a child that falls into that category. I relate to parents in Age of Autism because I have been through some of it, but there are issues too with recovery. One difference is that when a child needs to recover from a biological illness that has to come first--the right diet, the exact diagnosis, the weaning off antibiotics, or maybe getting the right antibiotic. Anyway, it's a biological puzzle. But a recovered child has more psychological trauma because he/she has to live a very clean life compared to peers, and probably has suffered through years of peer rejection anyway. My daughter's ataxia was once so severe she could barely hold a pencil, let alone jump rope, or play hand games; I had to watch the other girls exclude her. Now she has an extreme fear of rejection. She doubts all her relationships. And of course she can't join in the partying with the other women her age because she can't drink, eat in restaurants, etc. etc. Recovery is real but it's conditional, still the right diet, the right supplements, the right doctors. And there is post traumatic stress, permanent psychic scars.
Posted by: Kapoore | December 23, 2012 at 12:37 AM
I have not used the word recovery, maybe can not, because the process has been so slow. My son is headed to entering the work world, maybe some people won't guess autism...just different. He is smart, but... I am not afraid of the word autism because I believe it is just another word for mercury poisoning. But I am afraid of other peoples perceptions. My 15 year old grandson will never be able to use the word recovering, but hechanges...understands more, etc. Mercury poisoning via vaccines has happened and it will always be part of so many lives. I think I will enjoy your site.
Posted by: ldb | December 22, 2012 at 01:31 AM
Love this idea!
Have been inspired by your posts since I first read about your girl on GR years ago.
I also live in a netherworld of having a child once on the spectrum (now without diet, therapy, and functioning well in regular school) but still struggling with constant anger that this happened to my child/family and continues to hurt other children.
It's hard to relate to people who haven't experienced this or some other catastrophic issue. And with new people in our lives - do we share and expose our child to endless scrutiny?
It's far better than ASD to be *here* (and in some ways we appreciate the mundane more) but we have been forever altered.
Look forward to your unique perspective in this space!
Posted by: Michelle | December 21, 2012 at 10:51 PM
Thank you so much Julie!! As Sam nears recovery himself and his dad and I fight ever harder to keep his services that enable him to become successful, I can relate so very much to what it is you say. Thanks for being a voice for many of us who have grown too tired, overwhelmed and often confused by our new surroundings and situations. You made my day on day when I needed it most! We were just informed today by a state hired and paid shrink that he believes Sam will outgrow his issues and that his peers will become increasingly accepting and tolerant of his issues. He hasn't even entered middle school or begun puberty yet!! I kid you not. Sigh..........now we await the denial of services letter. :( Merry Christmas!!
Posted by: Lin Wessels | December 21, 2012 at 09:11 PM
AMEN to this!!!
"And we must counter the insidious and false propaganda that autism is a life sentence, most recently disseminated by Autism Speaks: "I will always have autism.” Really, how do you know? And if Autism Speaks is giving up on you, why should we give them our money?"
Posted by: Beth | December 21, 2012 at 03:47 PM
Julie,
This is precisely where we are. In the regular world, we feel like aliens. I come to The Age of Autism many times each day, because even though we may not fit here, exactly, this is where people make the most sense to me. It is where my heart is.
My daughter is not completely recovered. She carries emotional and social scars that must also be healed somehow. Even if she is healed completely, I will never leave this battle. There is no going back.
Thank you for creating a place where we really belong.
Posted by: Kathy | December 21, 2012 at 02:59 PM
That is a great idea! My son has made enourmous strides since he was diagnosed with moderate autism at age 2.5. He still has a very long way to go, but how does his life compare to the life of so many of the kids that we know from back then? Why are they still almost non-verbal and have only made little improvements in spite of intensive therapies over the past 6 years? Why are we so lucky and got our kid back? We still fight, fight every day, but we are also so grateful for all the gains he has made.
Posted by: Anja | December 21, 2012 at 02:22 PM
I have a five year old in managed recovery..we still have some bad days but over all he is functioning like a normal kid...I am looking to meet more moms in my boat...
Posted by: channa brennon | December 21, 2012 at 01:20 PM
I, too, live this life. I will never leave this community as it is what has gotten us through the darkest of times. I am so incredibly thankful for my son's recovery, yet I still feel the pain of everyone who is desperately hoping for their own child's recovery. Our days of flying around to DAN! Dr. appts, conferences, blood work, supplements, testing, B-12, HBOT, craniosacral, Yasko, homeopath appts, blah, blah, blah seems like it was forever ago, almost like it happened to someone else. But I will never forget, and I empathize with everyone who is still stuck in the middle of it. Survivor's guilt is ever-present.
My son was diagnosed as moderately autistic at 2.5 years old and today, at 11, he would most certainly get an Asperger's diagnosis, if we cared to take him in for reevaluation. Many people who meet him even tell me "Wow, I would have had no idea what you had been through if you hadn't told me. He seems totally fine to me." He's still in special ed and he has some social and learning deficits, but he is the sweetest, most polite, articulate, caring, happy child. Every once in a while we'll still get the massive hissy fit, but considering we lived our lives in hyper-overdrive with almost constant tantrums for about five years straight, we are doing pretty well, all things considered.
And for those who are wondering what it was that worked for us, I would say all of it. The DAN! stuff gave us a great foundation, healing the gut, etc...but when we started homeopathy we saw the most change, at least behaviorally.
Good luck to all who are out there still fighting the fight. You are not alone!!
Posted by: Jenny | December 21, 2012 at 12:56 PM
Julie,
You are, hands down, one of my favorite writers over here! I cannot begin to tell you how inspirational your articles have been to me over here (I have a binder full of them, to tell you the truth).
I used to feel tremendously guilty over our son's vaccine injuries; and now, at times, I feel guilty that he has recovered. It's crazy, isn't it? But I find myself here at AOA every single day, rooting for the rest of these kids and thanking God for the ones who have recovered.
You have NO idea how much you have helped.
Posted by: Bayareamom | December 21, 2012 at 12:47 PM
Oh that is an excellant idea!
Very good -- idea!
I love it!
I know as an older parent - I feel sorry for the younger ones.
Right before I had my children I thought death as horrible but heath problems relating to the brain and behavior was worse.
Well it happened; and I found out that death would still be a lot worse.
I know the older parents come on here and talk about increased or even the emergence of seizures/depresion when their kids hits puberty.
I know the older parents come on here and talk about other mental illnesses co morbid with autism when they reach their 20's a whole decade of worry there.
If I was a young parent reading this I would shut down-- I am not sure I would want to know the future possibilties that are so bleak.
Everybody needs hope.
Posted by: Benedetta | December 21, 2012 at 12:20 PM
Julie, I think what you will be writing about is more important than ever especially after what happened in Newtown. There is no doubt in my mind that the shooter had sensory processing disorder. He couldn't feel pain. He hugged the walls of his school as he navigated the walls. We need to look at behavior as how a child sees, how a child ears, and how a child feels. I know I'm speaking to the choir here. I just want to give the public permission to sound the alarm bells when something doesn't appear right. It is up to us in the autism community to educate the public on what "autism" really is. We are in a world of hurt right now when the public is only being told "autism is a social disability" as an "expert" on NPR said the other day. I look forward to reading your column and passing it on:)
Posted by: Mary Cavanaugh | December 21, 2012 at 12:06 PM
What a great idea, Julie!
Posted by: Jen | December 21, 2012 at 12:00 PM
There is no need to feel guilty. That energy needs to be directed at those who should feel guilty: the people who are in denial that something can be done. In my book autism is the result of a toxic reaction, and when a doctor avoids changing his mindset, he needs to be exposed. He avoids reading the available literature. He has the power to stick his head in the sand. He needs to be shamed by the visibility of recovery.
Your idea of writing about proven recovery is an excellent one. It gives hope to parents, and it gives their children a chance.
Posted by: Birgit Calhoun | December 21, 2012 at 12:00 PM
I'm so glad that you will be writing about this and I'm sure your articles will be very interesting to me - even though my son has a very significant mental handicap and is not recovered from autism. I will celebrate your daughter's successes and empathize with her (and your) trials and tribulations. I have often thought that in some ways it would be harder to have a child who was closer to fitting in the mainstream and finding a regular job and education and social life, but encountering certain challenges. My son is so happy just as he is. He is not aware of being different, or not succeeding. Of course I worry about his life after age 22, but at least for now he is happy. Anyways, we all have different lives and autism is a broad spectrum, but hopefully people can appreciate that diversity. Plus, with so many naysayers denying that recovery is ever possible, it's so important for the recovery stories to be told. Thanks for writing!
Posted by: Twyla | December 21, 2012 at 11:46 AM
I look forward to The Recovery Room Julie.
There is no way to move on until the carnage stops. Who would expect recovered 9/11 survivors to move on if planes were being hijacked and flown into buildings routinely?
Posted by: samaxtics | December 21, 2012 at 11:21 AM
Julie, we ALL celebrate your daughter's success. I have friends whose kids are typical and they have said to me, "Do you mind if I talk about Janey her getting license?" and I always say "Of course not! I'm happy for what your kids can do." The folks who make me want to scream are those who try to equate the garden variety not so tough issues they have with their typical kids with what we go through in our family. My own sister has done that to me - meaning to find a shared spot and not meaning any ill- but being tired and not wanting to take your honors student to his calculus tutor is NOT the same as being exhausted 24/7 and taking your 3 kids to speech therapy.
Posted by: Stagmom | December 21, 2012 at 11:17 AM
Julie: Never, never feel guilty or hesitant about openly discussing what you've accomplished with your daughter. The successes should be celebrated, the remaining obstacles identified. I have one daughter who has largely (but not entirely) recovered, and one who has so far not responded much to treatment, but you hold out hope and guidance for us all. And we must counter the insidious and false propaganda that autism is a life sentence, most recently disseminated by Autism Speaks: "I will always have autism.” Really, how do you know? And if Autism Speaks is giving up on you, why should we give them our money? The Issa Committee should hold another hearing featuring kids who have recovered from autism.
Posted by: JerseyGuy | December 21, 2012 at 10:58 AM
Thank you, Julie. I think it's called "survivor guilt". I too have a daughter who has recovered and one that is 99% better. AofA is my favorite site where I read and root for all our precious children who are stuck in this quagmire. My oldest is a freshmen majoring in Environmental Science/Environmental Policy. She is going to take on some of these greedy companies who are ruining our environment and posioning our children. I will continue to tell our story....never forgetting the battle we have fought. My wish is that she will tell her story to everyone and anyone who will listen.
Posted by: Mom to Two daughters with vaccine injury | December 21, 2012 at 07:49 AM
You have just described my life and my son's life. Make no mistake, I am so grateful for my son's recovery, no complaints from me. I still feel very isolated as my priorities are so different from everyone else in my life. My extended family wants me to move on already. I also live between two worlds. This website has helped alot.
Posted by: LInda | December 21, 2012 at 07:33 AM