I Want It Now

SnapRecovered.  Healed.  Cured. No longer on the spectrum.  Lost diagnosis.   I don’t care what the correct term or phrase is, I just want it and cannot understand why it is taking so damn long. I know, “Autism is a marathon not a sprint.” “There is no Magic Bullet.” I get it.  My son is now 11; he was diagnosed with autism when he was two and a half.  I thought for sure I would have him better by the time he turned five.  He would attend a regular kindergarten class, and all would be well in our world again.  When he turned five, he was not “recovered,” but was making progress.  I stopped putting a timeline on him, but continued full force with trying to heal him.  I go through my days remaining positive and being grateful for what I do have.  I rarely cry over autism.  I just keep going.

jill babyLast week I was watching old videos from when my son was a baby.  He was such a beautiful baby.  His little curls and his cute little face with that huge smile.  I miss that baby.  Why can’t they stay that small?

I started watching from when he was six months old.  He was laughing, having fun with me and his grammy.  He was playing peek-a-boo.  I watched him at 11 months old, his fancy footwork dribbling a soccer ball like he was a pro. I watched him playing basketball with his papa.  Tears started; he was “normal,” happy, and healthy.   Next, I started watching the video of him at 18 months, I heard myself saying, “Hey, buddy, why are you ignoring me? Look at the camera. Why won’t you look at me?”  I called his name, and he didn’t respond.  I missed every sign.  Autism wasn’t even close to being on my radar.  It was clear as day; it was autism.  I continued to torture myself, watching video after video of him not talking, not responding to his name, not engaging with anyone, not knowing how to blow out a candle at his second birthday, and not interested in anybody at his party.   I missed it all.  Mind you this whole time his Jill olderpediatrician continued to tell me, “You have a healthy, happy baby,”  even though we battled ear infections every other month.  I would ask our pediatrician, “Why so many ear infections? And why does he keep getting eczema?”  Her response: “Oh, he is a boy. It’s common. Here’s a script for amoxicillin.”  This was normal?  My son gradually slipped into autism.  It was not overnight.  However, by the age of two he was completely gone.  Full-blown autism.  But nobody knew, not even me, his mom.

I decided to break out our autism therapy session videos.  I started from his very first session.  We took video once a month, so we could track his progress.  When I got to his fourth session I watched how well he was doing.  I was amazed at how much he had changed in four months.  As I continued to watch, I completely and uncontrollably lost it. I cried like I did the day my son was diagnosed.  I asked myself, why the hell is he not recovered by now?  WHY?  WHY? WHY?  What am I doing wrong?  We have spent hundreds of thousands of dollars over these nine years trying to recover him.  We have an HBOT and infrared sauna. We have seen every specialist. We have done every therapy, diet, even voodoo crazy things. EVERYTHING!  And he is still not “recovered.” I am angry, I am pissed off.  I feel so much guilt.   What piece to this autism puzzle am I missing?  I am able to help everyone else’s child, but when it comes to my own I can’t.  I am failing.  I called my dad, who could barely understand me because I was crying so hard. “WHY IS HE NOT BETTER?”  “But he is better,” my dad said.  “Look how far he has come.”  We will just continue working on it.

When my husband came home that night, I started telling him about my day.  I started telling him how I can’t believe our son is not “recovered by now.”   He stopped me immediately. “I don’t want to have this conversation. I think about it every day.”  I stopped.  I know my husband; he holds it inside.  Some may think this is a bad thing, but I accept that this is how he copes.  The next morning as my husband was leaving for work, he looked at me and said, “Hey, I want to talk about that doctor in Canada we went to. I think we need to rethink his treatment as an option.”  My husband may not be a talker, but he is a “Thinker,” always strategizing with me on what our next game plan will be.  Our hurt and anger turns into adrenaline and keeps us going.  I know my son has come a long way, but we still have a long way to go.

Even though I battle the autism beast everyday, I have to remind myself: My son is making progress.  I can’t imagine where he would be if we had done nothing and just “accepted” autism.  He has made many gains and is doing well.  Just the other day, I caught him putting the towels in the washer and he turned the washer on.  Oh, my God, he was doing laundry!  (Yes, he forgot to put the detergent in, but so does my husband.)  He is loving and continues to amaze me everyday.  Most importantly, he is happy.  Patience is not one of my strengths.  I know in my heart he will be healthy someday; he will make it.  I never give up hope.  I just want it now.

(If you are unable to view the video, please click here or copy and paste this url into your web browser:   http://www.youtube.com/watch?v=TRTkCHE1sS4)

~ Snap

For more blogs by Snap, please click here.

Pin It
This entry was posted in Blogs by Thinking Moms' Revolution, Snap TMR and tagged , , , , . Bookmark the permalink.

29 Responses to I Want It Now

  1. Mama bird says:

    I needed to hear/ read this today…. Thank you

  2. Kris says:

    OMG you just wrote my story. My son also 11, diagnosed at 2.5 yrs old, happy baby, sick toddler eczema, asthma, ear infections, autism, two and three mortgages worth of therapy and treatments, now mainstreamed in school, but still things we need to do, roads we need to travel. Our kids are lucky us mums want it all and never sat back and accepted it. We will give them the best possible outcome, whatever that looks like and we will go to our graves knowing we did everything we could and that’s as much as we can do. x

  3. julie says:

    Have you tried CEASE therapy? 🙂

    Best of luck, never give up!

  4. Sherry Eshraghi says:

    I can’t believe how your story is exactly the same as mine. Just yesterday I was looking at my daughters pictures as a baby and was in awe how she was full of life looking directly into the camera with a smile on her face. I posted them on facebook just as PROOF for everone to see that she WAS normal. Now at 6 1/2 I too am very disappointed that she is still not recovered and same as you we have spent thousands of dollars and have the HBOT at home! Sometimes I think God makes it harder for some of us because he has a plan. Iwent back to school to get my PhD in natural medicine to help other parents yet was not able to recover my own daughter. I guess I have to experience every obstacle to be able to advise other parents. But we won’t give up, if not recovered it’s still better to be high functioning!

  5. Cameron Bellestri says:

    You are the most determined mom I know and the most impatient! 🙂 Many parents would have given up by now but that’s not in you and your son is improving because of it. He will get there but until then know that you are helping so many others (including me) with all of your experiences. I love you and so does Miss Emmy Belle!! 🙂 xoxo

  6. nikki barbieri says:

    My God I felt like I was reading our story! My son is 11 years old too.I’ve been a bio med mom for a decade already.He is no where near recovered but has made gains but he regressed again and now is coming back from that.He has been through hell and me along with him.I love him so much.He is a true warrior! God Bless! : )
    PS were in Canada : )

  7. Chrissy says:

    I also feel as though I could have been the author of this post. How sad is it that so many people can relate to something that no one should have to go through. I also feel like my son gradually slipped into autism; it was not overnight. At first, that made me doubt the links to shots or other toxins. But now I look back at the smart, friendly baby boy I had, who spoke his first words at nine months, 3 words in one week, and I know something terribly wrong happened to him… I just missed it. He also had 9 ear infections in one year, then tubes in his ears, and 3 after that. Now, to date, he has been on 20 rounds of antibiotics, which the mainstream docs just give out like candy. We are battling yeast like crazy and can’t kill those SOBs off. And our DAN says we can’t chelate till we kill yeast, so it’s this awful waiting game…..

  8. Kari says:

    My heart goes out to you. He’s beautiful. I need to say that I did not vaccinate my kids 22 years ago. Well, I did fold once when my son, the oldest, was 7 months due to peer pressure and he had convulsions and screamed for hours that night which of course was responded to by the Dr. as: It had nothing to do with the vaccination. Hmm. Why I’m responding to you is that I’m finishing a nutrition certification and I am now very committed to people understanding the power of GMO’s in Autism. Since they’ve become prevalent in our food autism has skyrocketed. I’m seeing a main culprit in formula with their only sustenance being completely neurologically and immune system damaging. There have been many reports that if you take them out of his diet he can get better. I’m not sure how many mom’s really get this and feel strongly about it. He can get better is my point. I want that for you and don’t ever give up!

  9. Stacey Homyk says:

    Wow, this sounds like me. My 7 year old son has Autism. I also say he slowly slipped into Autism – from a heathy ” normal” little boy until about age 2 yrs. Then he stopped babbling, responded to his name, playing with toys in the typical way, etc. With ABA therapy, speech, equine therapy we have seen him progress, though he still can not talk with words. He babbles all the time and is pretty much a happy boy, for which we are grateful. But there are days when I am sad that his speech hasn’t progressed to at least the point of being able to ” tell us ” if he is hurting or what he needs. Our family will not give up, trying our best to do what we can to see our son succeed.

  10. Lisa Kelly says:

    Absolutely me! I am having an incredibly hard time lately as my daughter is just not getting better. I feel sometimes that i have done something wrong with her. Just like you, i help other families and their children get better, why doesn’t mine? Thanks for sharing your feelings, i thought i was the only one. Hang in there Lady!:)

  11. Liz P says:

    I live every day pushing Veruca Salt out of my way – she is not very helpful and makes me less productive. I am always so (inwardly) angry for my daughter and what she misses-out on, every single day. I am frustrated for my family, too, because we all sacrifice so much to assure her success; every decision we make is driven by our (now) limited finances and her therapy schedule. She has made so many gains, and not one has come easily – imagine, 17,000+ hours in therapy over less than 10 years! Add regular school days to that, for the last 10 years. People can’t really tell she has Autism when they meet her, but will quickly detect something is missing — I liken her to the dried-in frame of a house, we have given her the ability to stim in socially acceptable ways, the ability to use language and typical prose, we have taught her the social rules, and how to use the toilet, wash hands, brush her hair and teeth and bathe, but what we haven’t yet taught her shows. The words she hasn’t been taught, she cannot infer. She cannot learn just by hearing, reading, or seeing something new. She requires direct, planned, repeated (up to 300x) instruction in order to learn. So, while she can “pass” from a distance, she has difficulty attending to what you are saying and appropriately responding in a conversational manner. Some people would call her “recovered,” but I argue that she will always have her Autism because as hard as she tries to work around it, it is still a hurdle, front and center in every task she attempts. Like everyone else on this journey, I do want it all and I do want it now, but I can see that unless and until the Government is willing to admit our kids exist and were injured, the research will not happen that could lead to faster and more effective treatment options. Simply put, it sucks to be us, today.

  12. Carolyn Gammicchia says:

    When our son was diagnosed there weren’t the options for parents now. His destiny was to be institutionalization and that was after trying to get an appropriate dx for almost two years. Today families can go in a get a ASD dx in one appointment. There weren’t many options for us. That was almost nineteen years ago. We were almost pioneers at this…..the GF/CF diet was then was thought to be hogwash. ABA or DTT then was what some thought as a form of animal training used adversives to get desired results. Secretin…..yes we utilized that too and were thought by others to be out of our minds. Sensory integration or cranial sacral therapies? Folks didn’t even know what it was until we asked and that was what is was like with everything we sought to assist our son. I often look at families now and think there is too much actually because it is so, so daunting to identify a need set and then match the appropriate intervention to that. Then you have to do that within medical interventions, educational services and supports, and within your daily life. Hell that is like being a CEO of a major corporation and that is really what we are doing day in and day out.

    I am very glad that you’ve shared your story. It is important for parents to realize there are no fluid timelines, no gauges on what will provide the best results for any individual in this process, and that this is in no way reflective of them as a parent. We have to pace and realize that is repair and remediation is taking place at the same time as the acquisition of new skills sets. So we do have to be extra patient and more forgiving of ourselves as well.

    Our was diagnosed with severe autism. He was a vaccine injured infant, that we did not realize from the Hep B, and incurred another injury much more significant at 1.5 years. That is when he regressed into what was called ASD. We were told if he didn’t have langauge by five…..there would be no hope. If he didn’t learn to read by the second grade…..there would be no hope. If his behavior could not be modified by age eight…….there would be no hope. I can go on but timelines had no effect other than to cause us to doubt ourselves and our son even more. It doesn’t work. Sustain your hope, visualize your dreams for your child, and work toward those at a pace where you can do so and so can your child.

    Today our son still has autism. However as he says “Just a little bit” and is doing well. He’s progressed then has stages of regression. But so has our older son without ASD. 🙂 That is life. He attends college, made the Dean’s List twice thusfar and currently holds a 3.17 GPA with very little accomodation. He is the healthist one in our family and inspires us and others with his resilence and tenacity. He has dreams, hopes, and career goals. Something that would not have transpired if we gave up. He too has chosen his path at this point, but he is still a work in progress. Yes we do still worry about his future too but know now that those two decades were well worth the work and wait.

    Thank you Snap and I hope you don’t mind my response “blog”. 🙂

    • Professor says:

      You’re kidding, right, Carolyn? We love responses like that. More examples from the community! People who are getting it done when all the odds seem to be against them. How could that be anything but awesome?

  13. Kerry Butler says:

    Another one that could have written this post…exactly. Mine is 9 and still no-verbal. I also torture myself with the “before” pictures and videos. the baby that had words, played with toys and was engaged. Don’t get me wrong we have come a very long way. I love my son….but…we’ve been robbed of everybody’s normal.

    I was on some autism mom FB page and the whole vaccine debate was going on. One mother said, “I would rather deal with autism and have my kids alive.” Wow. Easy for her to say, she isn’t the one with Autism. Or maybe she isn’t the mother that watched her perfectly developing baby slip away and never really come back.

    • Professor says:

      That answer really pisses me off. That answer completely minimizes what people go through with severe autism in the family. The list of possible effects on a family is enormous. And believe me, as the mother of a child who died, I’m well aware of what families go through when a child dies and I would NEVER minimize the difficulty of dealing with autism. That answer also presupposes that the choice is that simple. For one thing, the chance of a child dying from a supposedly “vaccine-preventable” illness is extremely remote in the first place, vaccines or no vaccines. Secondly, the chance of a child being on the autism spectrum these days is orders of magnitude higher. A cost/benefit assessment with any validity HAS to take those two facts into account.

  14. AmyinIdaho says:

    I hear you – I want it yesterday!!! I think the worst part for me is losing all sorts of perspective on what progress has been made and where we stand today. My son has made tons of progress in the last year yet when I completed an ATEC a couple of nights ago, the score was higher – WTF?!?!? It’s like having body dysmorphia – I have been in this fight for so many years and so intimately involved with every-single-thing my son does/thinks/doesn’t do/says/reacts/initiates/doesn’t initiate/looks at/doesn’t look at – I’m clearly too close to have any real perspective! As they get older, their peers are racing along developmentally – we’re making progress forward but the gap is ever widening. As the layers are peeled away, new ‘issues’ are discovered/uncovered and it feels like a cruel, never-ending nesting doll game.

    The marathon not a sprint saying probably needs to be updated. How about “this is an Endurance Eco Challenge on steroids, not a simple marathon”?

  15. Planetpj says:

    I have an almost 8 year old. We have been doing biomed since 4 1/2 when he was diagnosed. I always say he is 85% recovered, but the last 15% is so elusive. AC Chelation has been the key over the last year. Hang in there! You’ll get him back!

  16. Mika says:

    I’m you, I could have written this post. You can cry on my shoulder (I’ll return the favor). Hugs to you Snap

  17. Lori Culbertson says:

    This post spoke to me in so many ways! My son is 13 and not recovered. I want it NOW as well! Heck, I want it YESTERDAY! I have no idea how much has been spent, it has been dependent on SSI, and fundraising money to help him and to do what he needed, and as a result…we haven’t been able to do what was always needed or recommended. It saddens me every day, that my son’s recovery hinges on my finances…

  18. LaLecheMama says:

    I have read over and over and over again that breastfed babies have lower incidence of autism, and when they do have autism, they strongly tend to be on the milder end of the spectrum. I’ve even heard Andy Wakefield mention this in a talk he did.

    Am I missing something here?

    Is this not a great big clue to both cause and potential cure for autism?

    What about breast milk helps children avoid and/or recover from vaccine injury?

    AND WHY IS IT NOT BEING STUDIED AS A POSSIBLE TREATMENT FOR AUTISM???

    Nobody bats an eye when a younger sibling donates bone marrow to an older sibling with leukemia. People just shrug and say, “how wonderful” when a relative donates a kidney.

    Why is nobody suggesting that mothers of autistic children obtain mother’s milk as a supplement? Obviously, it can’t hurt–and for the majority of autistic children with younger neurotypical siblings (yeah, that older father thing is a lie, isn’t it?), it would be easy enough for a nursing mom to pump a little extra.

    And as trials of autism treatment go, it would certainly be safer than ANY of the drugs Big Pharma wants to sell….

    • My middle child was dx’d with autism while he was still breastfeeding. He was 3, and his brother was born 4 days later. Since I was nursing the little one, I made sure my 3 year old got milk too. I even pumped for him. It didn’t help. At least not noticeably. Who knows what was going on internally?

      • Taximom5 says:

        Luna, I think that there is a significant subgroup for whom it might be an enormous factor, but that doesn’t mean that it’s the only factor, or that it’s a factor for every autistic child.

        The connection may be in amount combined with timing–perhaps when a child is getting no milk but breast milk at the time of vaccination, the protective effect of the breast milk kicks in in full gear. We know that breast milk has an effect on vaccine effectiveness–there have even been suggestions that moms NOT breastfeed at the time of vaccination so that the vaccination is more effective! (Ya gotta wonder what these idiots are thinking…)

        But if a child is getting just formula, or even a combination of breast milk AND formula (and remember, the older formulas had high fructose corn syrup=mercury), or breast milk and cow’s milk (which has added vitamin D2, that we don’t absorb well, instead of D3, and D-deficiency causes glutathione depletion, and glutathione is needed to excrete heavy metals), the protective effect would be much less.

        I breastfed my autistic child, too–for 2 1/2 years. I am convinced that he would have been much, much more severely affected had I given him formula.

        His MMR coincided with our giving him cow’s milk for the first time–and he had severe diarrhea and his first ever ear infection.

        Had I not immediately pulled him off the cow’s milk (it never occured to me at the time that the MMR might hae had something to do with it), I’m sure that he would have been much more severely affected with both ear infections and intestinal problems.

        Of course, I was going against the advice of the pediatrician when I pulled him off cow’s milk. And that’s the problem–they don’t recognize even the most obvious problems, like what happens when you give cow’s milk to a toddler with diarrhea, let alone things like vaccine reactions.

    • Professor says:

      I have heard this, too. But I have severe doubts about its validity. It is not borne out in my experience. Don’t get me wrong. I think breastfeeding is awesome, and better for virtually every reason, and I breastfed my two kids for 3 and 4 years, respectively. But, frankly, I see no strong correlation in respect to the manner of feeding and severity of autism. In my experience, you CANNOT count on breastfeeding to keep autism at bay. While doing everything you can to keep your child healthy would certainly include breastfeeding if possible.

      • Taximom5 says:

        Really? I’m the only autism mom I know who didn’t use formula, avoided cow’s milk, etc. And, as I said, even Andy Wakefield said that he had noticed this. The available literature supports it as well.

        And I must not have been clear; I’m not saying that breast feeding keeps autism at bay. I’m saying that it’s a factor that may have a lot to do with vaccine reaction.

        Think about it.

        We all know that parents of SIDS babies report that their child had just been vaccinated, right? Nobody dares to study that one, of course, but they have looked at what the baby was fed. Why is the risk of SIDS 2-3 times higher in babies who were formula-fed?

        There’s a connection there. No, breast-feeding is not to be counted on to keep autism at bay. But breast-feeding AND not vaccinating might–and don’t be too sure that breast-feeding didn’t save your baby from a SIDS vaccine reaction.

        I’d suggest a poll, only I fear it would be misinterpreted by too many as yet another way to blame mom for her child’s autism (“it’s all her fault, she didn’t bother to breast feed,” etc) rather than as a way to confirm both a vaccine reaction and protective effect (to whatever extent) of breast-feeding.

        And, as I said, I think it’s something to be looked at as a potential treatment.

        Why on earth would you consider a gf/cf diet, yet not consider breast milk, with all the immunological protection it can confer, when we’re talking about kids with a truckload of intestinal disorders and autoimmune issues?

      • Kari says:

        Hi everyone. I have been following and researching this for a while now. And what I’m seeing is that vaccinations must be at the root of this epidemic for most. However, again another factor is the GMOs in our food now. Unless formula is organic it is full of GMOs and other detrimental factors. If a baby has that as it’s only sustenance it would be amazing if it maintained normal. There would be no energy of nutrients to engage the fight when vaccinated so for me it’s not that breast feeding would help cure this as much as not giving regular or soy nonorganic formulas which could destroy the chance and further the neuorological disruption happening or about to happen. This information does not seem to be widely known and frankly the powers that be don’t want it to be. GMOs are now in almost everything. In boxes cans fresh fruits and veggies and meat. Pigs eating Gmo corn display the same symptoms as autistic children, they can’t find their feeding trough, they start biting each other, they become loners,and when taken off it… They return to normal in a couple of weeks. The pesticides within the seeds of the GMOs are acytal choline esterase inhibitors and there must be acytal choline esterase in order for the synapses to be cleaned off and prepared for the next impulse. They are fat soluable so they are attracted to the nervous system and immune system and create havoc and pain in the intestinal track. I experienced this in myself after doing some intense cleansing and I was eating perfectly lovely alkaline fresh foods and started feeling horrible. I figured it out, went organic, and instantly got better. It had an impact on me and I’m passing it on to you.

  19. Sylvia says:

    Watching the old videos can be a soul-sucking endeavor. Maybe it’s important to do, so that we know we weren’t crazy. Our children were healthy, developing. Then we lost them. For us, it was after 20 months. The difference btwn a 20 month video and a 26 month video is striking. “Theo…..Theo……look at mommy…..look at mommy sweetie”. And yet that was not his worst. The regression continued. We are approaching his 5th birthday this June. I, too, thought it would all be done with now. I am a physician, we have resources, have done MANY different integrative treatments and mainstream therapies. Is he a bit better? Yes. But so very very far, still, from that beautiful 20 month old baby, who could call his sister’s name, play games, make eye contact and TALK. Spontaneous, varied, talking. I feel for you Snap. We all just simply keep moving forward. Keep trying. I think the word is COURAGE. COURAGE to keep working for a goal that seems elusive. I made a rare trip to the movies the other day, saw Lincoln, and you know what, it helped my autism battle. COURAGE. To keep fighting, to keep trying, to move onto the next treatment. Some recover. Many improve. Courage. More of it. For all of us.

  20. Janet says:

    This is how I feel too. My son is about to turn 5 & I’m freaking out. I’m tired and the road ahead seems so, so long.

  21. Lynn says:

    HUGS. more HUGS.

    I believe you are correct to “want it now”. I believe it will be the impetus which will continue to drive you (and Husband) to find the many “little” advances which will add up to the best possible outcome. Everyone says/said Albert Einstein was a Genius. I read a article written by him. In it he said something to the effect…”everyone says I am a Genius….Me, I am not so sure. I just want to know things more. I have more stick to it ness than others. When most would have given up, I keep on going, and keep on.. Until I figure things out.” So, not genius, “stick to it ness”…and “wanting to know” at least according to Einstein’s own thoughts….Seems like you are on the right track to follow Einstein.

Leave a Reply to Sherry Eshraghi Cancel reply

Your email address will not be published. Required fields are marked *