June 15th again!?! I’m up at 5am staring at the ceiling feeling like I could die. I haven’t FIXED him yet!! Not another birthday!! And I cry into my pillow dreading the day…
How many of us “crazy recovery parents” go through that?
David was born during the go ahead goal in the England vs. Trinidad & Tobago match in the 2006 World Cup. Don’t ask how I know that…OK, the TV was still on in the delivery room with the volume off when the Petocin finally did its job. I went home that day made a small pitch in my front yard, and bought little boots and shin guards for my boy.
He never wore them…
1
David’s first birthday was full of joy. Not walking yet, but so cute and happy I didn’t seem to care that he only crawled. After all boys are slower, right? And they all walk eventually said the “autism reseller” aka pediatrician. We had a little party for David and I noticed other kids were already standing and making a go at walking. David only crawled. And most times it was the “wounded soldier” crawl. How cute! Or so I thought.
2
David’s second birthday was not so fun. We had an upcoming appointment with the neurologist to see what was going on. Something was wrong. And alone with my son I was told about the” little A” word. It was August 15th, 2008. I cried alone in the parking lot as I thought I had lost my boy to some unknown mystery condition. Mystery only to those who cause it…
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It was a Friday. I will never forget that day.
I spent the weekend reading everything I could find on the subject. So many differing opinions until I came to the now famous Generation Rescue site. And at that moment everything changed. As one who has never backed down from a challenge, I saw that window of which JB Handley spoke in “Autism Yesterday”, and I dove through. I read Louder than Words, Changing the Course of Autism, and of course spoke to my children’s doctor. He quoted studies that I now know were done by criminals currently being extradited from Denmark, and told me no connection with vaccines existed. I read those studies and realized the statistical fraud they represented. I also realized that my daughter’s complete regression after her flu shot was probably caused by the same thing. (she got the mercury and went from trilingual to non verbal)
The next visit I explained to the pediatrician that my children needed me to be out of jail, and so he should probably put away the MMRV booster and flu shots or I would throw his through the window. Time to find another doctor…In spite of having new hope I had new rage at the CDC/AAP cover up that was clearly going on.
Birthdays suddenly took on a different meaning. It was a celestial hourglass with only so much sand in it. How much sand was left? What else can I do?
3?
Truth be told I don’t even remember David’s third birthday. The blur of autism, divorce, and being broke made celebration difficult. Therapy was impossibly expensive, and the DAN! Doctor was simply selling supplements. There was no roadmap, just keep adding one more supplement. See what happens. One time he was in his crib and said “papa” and I ran around thinking “here come words!”
Wrong.
4…
David’s fourth birthday was the first time I felt all the air come out of my lungs at the thought of him being another year older. He had made some progress on the eye contact and bowel issues, but was on just a roller coaster of off label anti-fungal use. The symptomatic gains of one day were the disaster of the next. But one day in July of 2010 I heard Davidino say words for only the second time.
Here is the link to the recording I heard in July 2010.
YES!! I CAN FIX HIM!!! I shared it on Facebook, emailed it to previous therapists, teachers, etc…I remember walking the streets like I could do anything. After all, It’s all easy compared to fixing David. Anything I wanted to do, I could do, if I could do THAT. And then the anti-fungal once again lost the battle, and the words went away…
And this song became my anthem.
The year preceding his fifth birthday was a rough ride for Davidino as he would get better and then worse as the clueless long haired fool I had trusted with his care guessed at what pharmaceutical to throw at my son. And each time the benefit was less noticeable, and the down side was worse. Add to it an incompetent staff that rotated on almost a weekly basis, and even getting an OAT result became a 30 day battle.
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And the whole time always thinking about that sand falling through the hourglass. Wasn’t there a soap opera with that image in the opening credits? Just let the next birthday take it’s time. Please! I haven’t fixed him by then for sure!
5!!!
And then he turned five. The dreaded number 5. The drop in recovery rates past that age. The “turning five” school transition, the loss of services, and one less year to fix him. He was still non verbal and although I had to present a happy daddy, I was dying inside. The gifts, the well wishers, the noise around his being alive for 1,825 days meant nothing. It was his next 25,000 or so days about which I was thinking. Who cares about these material things for him. I was thinking about his “hierarchy of needs”. There is no “self actualization” when you don’t have food, shelter and safety!
Fast forward to this birthday. Six years old. Can I handle today? It’s not going to be easy. But as they say in the UK. Keep a stiff upper lip! I don’t have David today. I’m not one of those “every other weekend fathers.” He’s with his mother only half the time. The same mother that blatantly lied to a judge regarding David’s needs and opportunity for services during our divorce has my little Dino until this evening. The mother who is so unlike all the warriors I now call my friends. All I can do is get through the day until I see him. And thanks to someone I adore, I made it through OK. Hi!
6…
I put on my smiley face and with the help of my recovered daughter (Yes, recovered. But that’s a whole other story…) we made him a little diet compliant birthday cake. I love you Bianca! Thanks for making the candle! My little Thinking Kid.
I went to sleep feeling like it will be OK. Thanks to a community of fearless doctors, parents and some that are both, I have a roadmap to recovery. I am more determined and confident than ever in David’s recovery. I have the support I need to get him what he needs, and as I sit with my little episode of the “Stimpsons” I can only say I’m truly full of hope & confidence. Don’t get me wrong, there isn’t a day that I don’t feel the oxygen leave the room. But, then I take a deep breath, get back to life, and move on.
So if you are watching the sands run through the hourglass crying into your pillow on the morning of each birthday, take this advice…don’t dread it. Instead “go big! Go really fucking big!” Because if you’re reading this, you are already in the right company. And that means your child is one of the lucky ones. And as we see from the recovery stories around us, recovery can happen at any age.
I know there WILL be a birthday when he says. “Thank you Daddy, I love you too”.
I love you Davidino.
Always and all ways,
~ David’s Daddy
* About David’s Daddy:
I am the parent of two. I have seen one recover and another on his way.
But to me, they are all my children.
Always learning, always teaching.
Always loving, always fighting.
All ways
We are recovering my boy with frequent low dose and not a day goes by that I am not thankful. And not a day goes by that I don’t think of all the other children out there like David who are still struggling and working towards recovery. This is such a great blog post full of emotion and hope.
Thank you Tiffany. Yes, I know Dr. Theo well. I am convinced that there is one path to autism which goes through the collapse of the Blood Brain Barrier. The resulting inflamation causes what is known as an ADEM. And that can result in the dx we call autism. And if one in ten with Mastocytosis has autism, that is 40,000x more prevalent than it should be if completely unrelated to one another. (100:1 x 4000:1)
So the other 9 kids surely are dealing with some consequences of over activated mast cells too.
BTW, the best way to activate mast cells is with a combination of Human Mitochondrial DNA and Aluminium.
Guess when that gets into a kid(Hint, human aborted fetal tissue and adjuvant)
Dr. Theo will win the Nobel prize some day.
I assume you tried Neuroprotek?
Thank you so much for sharing your vulnerable moments around milestones with your little boy. Our precious son doesn’t have autism, but a volatile mast cell disorder…had we vaccinated him, or had a higher burden of chemicals in his immediate environment, we’ve been told many times over, he likely would be dead or would be on the same journey as many parents here. Instead, we are fighting for his physical recovery, to lead a normal life at some point. His biomedical profile is similar to that of many children with autism, and 1 in 10 children with masto have autism as well, there is a very close link. Issues with enzyme synthesis, GI, skin and nutrient absorption. When he is overwhelmed with environmental chemicals or physical stress, we have neurological tics and some mild stimming.
In our search to calm his body, so he isn’t constantly reacting to his environment and in the hopes we can give him a chance at a normal life, we have found some info that clicks when reading about other family’s journeys…like when I read your blog post today. Dr. Theoharides, mast cell and autism researcher, mentioned at a conference I attended last month, that antifungals inhibit the liver from producing antihistamine metabolites from being synthesized in the liver. For those individuals with hyperactive mast cells, this could be incredibly dangerous, yet we hear of docs prescribing them often, without much regard for the interaction.
In some other research, we found that they also have other interactions with anticonvulsants, hypoglycemia meds and more that many in this population are utilizing. I can’t even imagine the frustration and grief all of you experience, as parents, watching your child regress, after seeing a glimmer of some improvement and recognition. I know there has to be some other paths that would help with candida infestations in these kiddos who often have such very sensitive systems, in a very delicate balance…and often they also have mast cell issues that are causing the chronic non-IgE mast cell reactions, which show up like they are allergic to the world, that allergists and other docs are just discounting, when they don’t come up on an ‘allergy test’.
This may be all old news to you…but on my journey, I’m following the ‘nudges’ and ‘bread crumbs’ as much as possible and am grateful for any time someone shares something that adds even a small piece to our puzzle, so maybe this will apply to someone else reading at some point.
Blessings on your journey as an amazing advocate and father to your children.
BTW-Also Staind “So far away”. Oh & “Outside”. I love Staind!!! Theyre music takes me away…& as u know we all need to ‘get away’ sometimes. Love mostly their old stuff (2006), now theyre a lil bit too metal for me but anything that has Aaron Lewis’ voice is awesome! He’s def got a pantydropper voice!! Hahaha:) Whew! Its gettin hot in here! LOL
You’re killing me! lol. So many songs that reflect the struggle. Some stop you in your tracks and some get you moving faster.
I listened to all those songs and it’s not easy to do. I find the pain is worse when things are getting better. You actually let yourself feel the pain than you couldn’t afford to feel before.
I see Coldplay tomorrow.
Can’t imagine hearing Fix You live…
Great post. I wish u & ur son the best. I know its hard. As diff as our children r, so r their recoveries. Bdays have def been bittersweet. They still r somewhat. Bc altho my son is now nearly recovered, he is not quite at the same place as all his 6.5yo peers. In alot of ways yes he is. (sweet) But in a few ways theres a lil difference. (bitter) But u know what? Those lil differences make him so much MORE special than the rest! And everyone who knows him sees him for who he truly is (& they luv him!) That is all i ever wanted- to know who he truly is & for him to be able to show that to the world!!
Ur son will get there- dont focus on recovery status on his next bday. Bdays r ALWAYS goin to be bittersweet. Even those who r 100% recovered, we still grieve those bdays (2,3,4…) when celebration just was so so difficult. But as long as u continue to hold onto hope, give it ur all everyday & never EVER give up! Celebrate every accomplishment no matter how small. In our world-bc of all the work,time&energy vested they r always big!!! Bc when u look back to the prev yr-u WILL c change, progress, successes,etc… The “sweet” will start to outweigh the “bitter”!! If u focus on THAT for his next bday-there WILL be reason to celebrate!
PS-love coldplay!! “Fix you” has soooo much meaning to ALL OF US on this journey to recovery. “Every teardrop is a waterfall”-very symbolic to this journey. Also check out Jason Mraz “Still lookin up”- beautiful inspirational song!
And Linkin Park “Iridescent”. I think music is healing & symbolic to our feelings during difficult times. We all have certain songs that mean,express& help us so much.
There was a time when I didnt think our journey to recovery would have 3parts. The soundtrack to my son’s journey will forever play in my mind. All 3 songs=):
1)Beginning(hardest time both emotionally& physically)- Hoobastank “Crawling in the Dark”
::help me carry on,assure me its ok,to use my heart¬ my eyes,to navigate the darkness::
2)Middle(warrior mode/fighting back & winning)- The Script “For the First Time”
::we’re smiling but we’re close to tears,even after all these years,we just now got the feeling like we’re meeting,for the first time::
3)Now(not the end but beginning of new happier,easier,rewarding{finally},optimistic phase)- Staind “Believe in Me”
::this life aint always what it seems,believe in me bc i was made for chasing dreams,its my life,its my choice,hear my words,hear my voice,and just believe::
Beautiful…just beautiful. Fix You is my song to LoRenzo! I have given up the expectations of what years should bring what milestones,we’re moving forward and that’s what really matters. He just turned 6 and is completely potty trained, think I care about how long it took? HELL NO!!! I’m ecstatic he got there! I’m doing this alone (too much for his father) but Hope springs eternal in this house. Hope for him and me. I’m so proud of you and I don’t even know you!
Thank you Diana, My next blog will be an invitation to all the fathers who, like your husband, don’t fight. Maybe it’ll get him involved.
Hey David’s Daddy….you rock! Your son and daughter are very lucky to have you and you will see, as you and many of us have, that recovery is hard work but worth it.
For us we will be celebrating our son’s 21st birthday July 1st in Las Vegas. His request specifically was “Mom and dad I wa to
go to Las Vegas for my birthday to gamble, drink, and go the a Gentleman’s Club.” this from a young man who had severe autism and his destiny by his diagnosing doctor was institutionalization. Yes we sat in a parking lot too and cried, had no direction from this expert than to concentrate on our older son.
That was almost over nineteen years ago. In reading you piece the first thing that made me want to scream us realizing not much has changed. But what hasn’t changed is parents are not listening and navigating the road to recovery. We wish we had then what folks have now, but our son is doing well and still seeking overall wellness, often with his choices now.
So for parents out there please know this work is worth it. We used to do “Walt
Therapy” with our son with st least one annual trip to a Disney property. It was difficult initially and we were most likely the first parents to hand out “onlooker” card to assist others in understand his challenges at the noise, waiting in line , not being able to eat the majority of snacks that Mickey and his friends were offering. Over the years he’s progressed, healed, and made us extremely proud
So now it’s his time, his reward, and what happens in Vegas stays in Vegas!
Thank you for sharing your story and making others think.
Thank you. Wow, a pioneer. Yes, so much more we can do today, however so many more vaccines so early (26 in year 1). I would give anything to hear David ask to go to Vegas and a strip joint! lol. Next trip I take is with him to Disney for sure.
Love this post!! Thank you so much for sharing it. I no longer believe the ‘little to no progress after a certain age’ BS. We will be celebrating a 9th birthday this year….and my son has made AMAZING gains this year. Recovery.will.happen.
Your son is a cutie pie! (that’s a Southern term of endearment 😉 )
MUAH!
Thx Sugah. The word is asymptotically…Always half way closer to recovery, eventually it’s indistinguishable from the actual goal.
As someone who just celebrated my son’s fourth birthday, I empathize completely. I, too, was able to take a breath this year and make real peace with the fact that we will be living with autism for a good while longer (like many, I was sure he would be recovered by now–we’ve been at this for almost 2 years). There is such a fine balance between acceptance, of who are children are, of what they are capable of TODAY, versus the ever-present urgency to find a way to help them. This birthday, I truly enjoyed my son’s pleasure at blowing out his candles and enjoyed our small “party”, which consisted of his immediate family and one grandma. I love this precious child more than I can bare at times. I remind myself, that I need to ENJOY him as he is, even while trying to heal his tiny body and fragile mind. Keep at it David’s Daddy and continue to enjoy him along the way.
Thank you. I enjoy him as he is all the time. I don’t enjoy him when HE is miserable. GI and related stuff. If I tortured him I couldn’t get him to make a more miserable sound…
Two steps forward, one step back – is still one step forward…I keep telling myself. Beautiful blog that we can all relate to…
<3
Sometimes it’s a big jump forward…and a hard fall backwards. But the one who crosses the finish line isn’t the one who doesn’t fall. It’s the one who gets up.
Keep on Truckin’, Dad. We’re gonna get there. We will.
Thank you. Two steps forward, one step back, two steps forward…
So refreshing to hear from a Thinking Dad. Your ability to see past the struggles and hold on to a brighter tomorrow is what makes you special. You are involved…..truly involved in David’s recovery as well as his day-to-day. Go big or go home, right? I am honored to call you my friend and David is blessed to have you in his life. He will be healthy, happy and grow into a wonderful man because he has you as a role model. Keep fighting (Pfftttt……like I need to tell you that: )
Thinking Very Big! Healthy Indeed!
Oh, those birthdays. They are so bittersweet. Each year I get a little more anxious about another year gone. I can’t believe the next one we will be staring down will be TEN. Thank you for sharing this. Great piece, David’s Daddy.
Thank you! One day we wont go to A1, instead we’ll all go to vacation with our recovered kids. You’ll have to get your drum of seeds in Jamaica or Mexico…
We just had our 6th birthday here too. It is always hard becuase w have such a long way to go and the par between him and other kids keeps getting bigger, but looking back at where we started – he has come so far and I try to be thankful and hopeful and take consolation in the fact that we are indeed doing everything to fight for our son back. Keep up the fight David’s dad – he is lucky to have you in his corner!
Never stop looking. almost four years into it and I just found a new great way to kill the bugs. look up http://www.mmsautism.com
A Thinking Dad on a mission. I love it! Mission : TotallyPossible
David is one lucky boy. It is clear that your drive and motivation will help David’s healing in countless ways. Cheers from London.
thank you Claudia. (my sister’s name).
btw, I’m British (among other things)
I’m a temporary Londoner….among other things! 🙂
Btw- Your comment about the long haired fool highlights the need for stricter requirements on who can qualify as a ‘DAN!’ practitioner. It reminded me of the fool we saw in New York several years ago. Very few answers- lots of our hard earned cash in his bank account.
Really loved your blog post David’s Daddy! My son has now had 16 birthdays, and even though he has not lost his autism dx, he is so much better and still continues to make progress, so this is what keeps us going. Why would we stop now, even though 16 birthdays have passed, when each birthday still brings with it progress. Some years more than others, but we take what we get each year and celebrate that!
Thank you. We never give up. Not on our kids. I have only the rest of my life to give. Nothing less.
This was beautifully written and very thought-provoking. Thank you. Listening to Cold Play always gives me goosebumps. We played it every night for our son when he was a newborn from the day he came home from the hospital.
I keep reminding myself that this is a marathon and not a sprint and try to revel in every success. However, birthdays and other transitions do sometimes put me in a state of panic…I do sometimes start to think…”What if he can not do______. What will happen if________.” It can be scary and overwhelming.
Thank you. Coldplay seems to be the band that most touches my heart.
Yellow – David’s favourite colour.
The Scientist – My life in autism
Warning Sign – Being away from my daughter
…but fix you seems written for my son. And I sing it to him as a lullaby every night as I scratch his back.
Going Friday to Coldplay!!!
I loved this post… and I love to be your friend….. Yeeeehhaaaww for Warrior dads… Your are AWESOME!!!!!! <3
Gracias Myrna. Parece que son anos que nos conocemos. El 14 vamos a cambiar el mundo. Un abrazo fuerte!
It’s so wonderful to hear a dad’s perspective! David is truly blessed to have you and and when the day comes that he is able to say, “Thank you and I love you” it will be your most memorable day.
Thank you.
And I’ll share that as well.
You are one of the BEST Fathers in the entire world. Your love for David is palpable. I am so happy and honored to call you a friend and fight this battle along side you, Brotherman <3 Kiss that kid for me….
sweetest.face.ever.
xo
Thank you! You are so special to me. We are in this together to the end. I’ll always be there for you as you are for me. FUA!!!
David’s Daddy,
So great to have a dad post! Thank you for sharing your story. So true about the emotions that go along with our kids birthdays. Hopefully soon it will all be a distant memory.
May this next year bring lots of healing and laughter and words!!
Ana 🙂
Thank you!
David’s Daddy, please look into music as part of speech therapy for David. Here in the US, cutting-edge speech therapists are using singing to retrain the brain for those suffering traumatic brain injuries; apparently, we use a different part of the brain for singing rather than for speech, BUT IT CAN BE TRAINED TO HANDLE SPEECH. I don’t know if this is only true for those who already had speech or not. I’m also pretty sure they haven’t bothered to transfer this to autistic kids because they haven’t realized that these kids have brain injuries…
Is there a Suzuki method violin teacher in your area who is willing to work with autistic kids? In the US, most Suzuki teachers are now trained to expect and be able to work with ASD, ADD, ADHD kids, and the method requires parental participation in lessons and beginning group classes anyway–and the method is so perfect for autistic kids, you’d swear it was taylor-made for them.
They start children at age 5, so it’s perfect timing for David. They start with little cardboard violins and dowel bows, with several weeks of musical games, so you don’t need to worry about smashed fiddles. It does everything auditory processing therapy does–except they come out of it being able to pkay the violin, and with other skills as well.
We replaced OT (for balance/coordination issues) with tap/ballet class, which also involved music.
And we found that an hour of outdoor activity (walks, playgrounds, umbrella parades in the rain, puddle-stomping, etc) was EXTREMELY helpful in a zillion different ways.
Hope those ideas are helpful….good luck!
Thank you! Doing The Listening Program starting this week. Will put music on the roadmap as well.