Delays, Dreams and Destiny

It’s been nearly seven weeks since I’ve written a post. I guess it’s kind of been like a long night of the soul. I just couldn’t bring myself to write for whatever reason. Uninspired, maybe. A little stuck. A lot stuck. Yet, at the same time, going deeper in this spiritual quest I’m on. I’ve been doing some reading, some journaling, a lot of praying. In the meantime, my blog has sat collecting dust. Perhaps Facebook and its bite-sized morsels of the beautifully mundane and funny, and the endless volleying of daily autism news via bulldog autism moms has filled a little bit of a void that this blog initially provided for me.

But I’m not quitting on my blog! Far from it. I’m just realizing more of my place amongst all of the voices of parents crying out for advice, for justice, for hope, for answers in this autism quagmire. Perhaps it’s a lonely niche I’m feeling led to because it’s largely spiritual. (Although www.rhemashope.wordpress.com does it better than anyone I’ve found.)

What Do I Have to Say?

While I do a lot of research, and am up on and in the camp that rues the vaccines, I have nothing more to offer to that discussion, really. Although I cheer on those who are going before government to lobby for our kids, I really can only offer an email here and there to my congressman right now. While I am going the biomedical route for my son, nothing has helped so profoundly that I can shout “eureka” from the rooftops to enlighten other parents to what we discovered. Even though I love ABA and its offshoots, my son is still struggling. And, my son is on the GFCF diet, but quite honestly, I’m not going to be writing any cookbooks–unless heating up gluten-free Dino Nuggets in the toxic microwave counts.

So what is my purpose in all of this? I believe as it unfolds, my voice will emerge with more clarity as it gets boisterously tangled with the messy spiritual side of walking through autism. That sounds so ethereal, but really it’s more earthy than that. It’s real life. It’s here and now. It’s not in a church building. It’s not waiting for the other side of Heaven to make everything okay. It’s not about getting a little lift from reading a daily devotion with your Wheaties. This is real, in-the-trenches Christianity. The kind that’s with you at the playground when your heart starts cracking. The kind that sustains you through a tantrum–yours or your child’s. The kind that kicks your butt out of the Valley of Doubt and Weeping for the fiftieth time. The kind that encourages another heart when yours is downtrodden. The variety that actually believes that God wants our bodies well. It’s not going to be safe. It’s not going to be pretty. But, I believe it will be worth it! You want to come on the ride with me?

Here some “real stuff” that has happened in the past seven weeks around here:

• When we thought our new state insurance costs would be $5,0o0 out of pocket max, they will be $8,000.
• Our son’s primary therapist moved away–we miss her.
• Josiah has regressed it seems–even fewer words, poor attention. It feels like he was better a year ago.
• Josiah has stopped sleeping through the night–I’m up with him 2-3 hours in the middle of the night, generally.
• His therapy center called us in for a parent meeting, concerned about increased sensory-seeking and inability to focus on his tasks, and they are wanting to go to alternative measures for communication like PECS and perhaps an augmentative speech device to hopefully help his speech along.
• We’re trying some new biomed stuff, including trying to fit in chiropractic appointments twice a week. More time, more money. Where are the results?
• We’re supposed to seek out additional speech therapy outside of his center. With both of us working full-time, I’m not sure when.

It all just feels so hard, right? Unlike other things, like New Years resolutions, you can’t quit. You also can’t escape or deny or numb. Sometimes you really want to. But you cannot go backward–you know too much. Where would you go anyway? You wake up every morning with this beautiful and sweet child before you, and you realize the weight of carrying your own life is light in comparison to carrying his. But there are more lives like his, and more families like yours, and that rends your heart too.

Desperate for the Destiny and Destination

There was a time that I thought autism came to shatter our dreams, but I’m becoming more convinced that it is moving us toward our destiny. Sickness is never good–and it is never from God. After hundreds of hours of study and combing through God’s Word, of that I am assured. But my life and this journey is not a mistake. My son’s life was not a mistake. God starts with us every day right where we are–using ALL of where we’ve been. These experiences will not go unused. Will we trust Him enough to lead us through? Will we have the fortitude to go the distance?

I’m afraid that up to this point in battling autism, I have not been able to find the “answers” like some people have in those things that I can control myself. I’m a classic “achiever” and “learner,” and this road has roughed me up pretty bad. If I can MAKE something happen, I will. If I can unearth the holy grail of autism research, I will Google my fingers bloody. If I feel like I’ve failed, I can take it personally and get profoundly frustrated.

Now, I’m desperate. But in a good way. Desperate presses through the crowd to touch the hem of Jesus’ garment. Desperate believes Jesus when he says your child will live, even though people reported that she has died. Desperate craves more of the Lord than “Jesus in a Box” that only pops out when I choose to wind up the handle. When I get desperate, I have seen women come into my life and encourage me beyond belief. When I get desperate, I’ve got to pay closer attention to my marriage. When I get desperate, I stop just hemming and hawing over the latest report on vaccines or the flavor-of-the-day autism cause/cure. I have to go to the Healer for my little Josiah. He’s all I’ve got.

Oh, all of you who are beaten down, broken and battered, are you ready to dream again with me?

When we walk in the valleys, we have a decision to make. Our pain can make us wither, or it can awaken our hearts to be passionately real. Our losses can destroy us, or they can help us grow stronger. Our actions can feed the devil’s victimization of our lives, or they can point us to the Word of God.

True dreamers will take their anger to the foot of the cross where they will find a heart big enough to hold their pain. They will begin to understand who God is and what He thinks about them.–Jill Austin, Dancing With Destiny

Celebrate Good Times Come on. Come on!

I am a terrible person. I am. Today the thought crossed my mind that perhaps I should change my religion to Jehovah’s Witness so I never have to celebrate a birthday or Christmas again. Today is Josiah’s 4th birthday. It’s wrecking me pretty bad. I beat myself up more than anything. “Why can’t I just be stronger? Why do I still want to crawl in a hole and weep? Why can’t I just stuff this ache in a far away place and enjoy the day for what it is, and my son for who he is? There are better moms of special needs kids than I am. They can embrace the journey and go on. I can’t.”

Friends, I’m not on anti-depressants, but right now I wish I was I guess. I’m not a big drinker, but I would like to cozy up with a box of wine and just mask this, this loss. It’s not like I woke up with a lot of expectations or anything. In fact, that I woke up with any clarity at all is a miracle, given that I was up with Josiah between the hours of 1-4 am again. To be truthful, I’m probably just incredibly selfish and self-absorbed. Josiah had a fine old time today, and it is HIS day, after all. I just grieve because he doesn’t even know it’s his birthday. I’m messed up because I’ve always had high expectations for myself and everything I do, and I CANNOT make my boy right. I would endure anything if by doing so I could make him right.

And then I feel guilty for saying that. He’s my son, and he’s wonderful the way he is. But, you know what, I wish I could have woken up this morning and gotten the house ready for a bunch of the neighborhood kids to come over for a birthday party. Josiah would have been so excited because everything was decorated with Cars or Spongebob or Transformers, or whatever the boy obsession of the day is. He would have had a cool cartoon cake–not some lame GFCF chocolate cake with soupy dairy-free frosting and sprinkles I tried to make so he’d have something. Well, he wasn’t interested in eating the thing that cost about $20 to make anyway. He also had no idea what it meant to blow out candles so that was pretty anti-climactic. And as for the party, it was just me and my husband and his parents visiting from ND. Not another kid. Not a sleepover. Not a pinata.

Again, Josiah was a happy camper today, so what’s my problem? He was so excited to see the mini trampoline we got him, and he loved the toys he got that lit up and made all sorts of noise. But everything was magnified for me today. I just changed my 4-year-old’s diaper. His words today were… jump, swing, ice cream, push, come on, banana, muffin, get out. That’s about it. When, oh when is this stuff not going to affect me? It’s been two years. And it’s been exactly that long since I walked through the day with that wonderful feeling that all was pretty darn right in my world. I want to feel that again.

I guess my problem is that I’m scared. And tonight, I’m definitely coping not hoping, which is pretty ironic being that my whole blog is supposed to be about hope. I cannot comprehend how we ended up with our child having this disorder that NO ONE can tell us what really causes it, and we really don’t know what his particular “ceiling” would be. And, his success in life might be dependent on me to keep chasing that next thing that just “might work.” And, who knows–tomorrow they may come up with some breakthrough that cures all of these kids by blocking some gene receptor or something–probably in the form of a vaccine (again, ironic). And now 1 in 58 boys in America have this disorder, but not enough people care about that stat. And I don’t know if my son will go to the prom, or have a girlfriend, or work. And I don’t know if I’ll have any other kids, or grandkids for that matter, and life just isn’t how its “supposed” to be. And, is God going to come through here, or what? Pretty dumb how a person spins everything out of control, isn’t it? But I’m going to let myself go on the spin cycle right now, damn it.

Am I the only one that is thinking this stuff? I’m probably honest with my feelings to a fault. I’ve never been able to “stuff” them, and that probably makes some others feel uncomfortable. It’s not that I’m not an optimistic person. I just have to experience my feelings to get to the other side, I guess. However, I’m sure my husband would appreciate a little more of my “stuffing” with his dinner.

I often wonder if I grabbed Josiah and headed to the hills if the words “normal” or “typical” would even matter. Who would care if the kid didn’t think or act like the other kids do–there wouldn’t be any other kids. What are we all comparing our own lives to anyway? Who made the rules that said life had to be a certain way? I don’t know, but this isn’t how I pictured mine going. So, I feel guilty and ungrateful and selfish and discontent tonight. Because I do want my life to look… normal. And I want my son to eat a bunch of sugary, delicious normal birthday cake until he gets sick, okay?

Alright, I have embraced my humanness, and now I’ve got to bring it before the Lord because he told me not to worry about tomorrow; today has enough worries of its own. I hope I didn’t thoroughly depress you, reader, because I feel better now that I got all of that out.

^{Lamentations 3:19-30}

I’ll never forget the trouble, the utter lostness,
   the taste of ashes, the poison I’ve swallowed.
I remember it all—oh, how well I remember—
   the feeling of hitting the bottom.
But there’s one other thing I remember,
   and remembering, I keep a grip on hope:

 ^22-24God’s loyal love couldn’t have run out,
   his merciful love couldn’t have dried up.
They’re created new every morning.
   How great your faithfulness!
I’m sticking with God (I say it over and over).
   He’s all I’ve got left.

 ^25-27God proves to be good to the man who passionately waits,
   to the woman who diligently seeks.
It’s a good thing to quietly hope,
   quietly hope for help from God.
It’s a good thing when you’re young
   to stick it out through the hard times.

 ^28-30When life is heavy and hard to take,
   go off by yourself. Enter the silence.
Bow in prayer. Don’t ask questions:
   Wait for hope to appear.
Don’t run from trouble. Take it full-face.
   The “worst” is never the worst.

Making Sense of Numbers

“All things began in Order, so shall they end, and so shall they begin again, according to the Ordainer of Order, and the mystical mathematicks of the City of Heaven.”
–Sir Thomas Brown

Today I’ve been reflecting a lot about numbers and dates. Such weighty significance in numbers, really. They are orderly and dependable as a rule, yet they take quantifiable account of the chaos that can unfold around us.

The seconds tick by in the day far too fast yet progress is gained much too slowly. The numbers drop off in the checking account before my eyes. Another page flies off the calendar each time I turn around. And, when it comes to autism, the numbers appear, flip and turn with each click, like I’m in the movie The Matrix–statistics that are unsettling and alive.

Today’s standout numbers for me are:

8.25.09: Today is the 2-year anniversary (I wrote about this last year) of the day that we were personally introduced to the word “autism.” It came so very unexpectedly, and it’s the day that the winds of change blew so hard it almost overtook me. We mobilized quickly to get answers. Things have never been the same since that date.

9.03.07: The lowest day of my life. It was Labor Day weekend and I remember being so sick to my stomach that I couldn’t barely stand up straight. I cried into a bathtowel hard–a tissue or even paper towel wouldn’t do. I couldn’t eat. I just watched and scrutinized every move of my baby in front of me as we began to lose connection with him. He was becoming so far away. My husband and I had just spent many hours in that previous week Googling autism, and it sounded positively damning. I remember us just crying together, “If this is what it is, what are we going to do?” Somehow, the human spirit kicks in and tangles with the supernatural enough to keep moving forward, hoping for a better day. We still have our heads up.

1 in 100; 1 in 66; 1 in 81; 1 in 10,000: These numbers must hold some sort of clue. Some direction to study. The past numbers of 1 in 150 kids being affected by autism as reported by the CDC is about to change, according to this report that says it is now weighing in at 1 in 100, and 1 in 66 among military families. The CDC may be ready to call autism an “epidemic.” You think? In Minnesota where we live, there is a harrowing study that came out saying that our state has the highest rate of autism in the country at 1 in 81 births. (It’s actually something like 1 in 24 for kids of Somali refugees living in MN.) And then there’s the clincher: the rate of Autism among the Amish is 1 in 10,000, which was our national rate of autism in 1987. Surely, if there was an honest study, we could find some links here.  Really, between genetics, environment and vaccines, what is going on? Which leads me to this important number…

9.09.09: Mark your calendar for this date. The National Autism Association is going to boldly ask the entire nation HOW MUCH LONGER? through a series of ads and press releases. The main message:

How much longer before our children have insurance coverage? How much longer before you remove toxins from vaccines? How much longer before you do a vaccinated versus vaccinated study? How much longer before you create federal laws to regulate restraint and seclusion in school? How much longer before autism families get federal aid? How much longer will our kids have zero resources? How much longer before you declare autism an epidemic? How much longer before you declare autism a national health crisis? How much longer before you test the safety of simultaneous use of multiple vaccines? How much longer until you address where children with autism will live after their parents are gone? How much longer before you admit the rise in autism is real? How much longer will you continue to call tens of thousands of the same story a coincidence? How much longer will you allow more vaccines to go on the schedule? How much longer before you fund real research? How much longer before our children get real answers? We’re waiting…

10.04.09: My baby boy turns 4. I know he has come a long way, but is it going to be enough? He will have less than 2 years before he hopefully is ready to enter Kindergarten. He will have had over 4,000 hours of therapy by age four, and 8,000 by Kindergarten. About $8,000/yr. of out of pocket costs go for special food and biomedical treatment. I want him to succeed. To think. To speak. To have friends. To be happy.

At the end of the day, it all adds up to this: my precious little boy is so worth it. Your child is worth it. Unearthing answers for those who come behind us is worth it. Each number or cold statistic reflects a life–precious and dear to parents and family–and to God. A thousand kisses. A thousand smiles. A thousand tears. A thousand memories. A thousand dreams. A thousand prayers. The odds are, it will all pay off someday!

Studies Show that Autism Studies Contradict Each Other

If you have a child with autism, you likely receive those daily news updates about autism in your email inbox. I used to read them faithfully, but now they just make me crazy. I have never seen such in-fighting, polarized opinions, and opposite study results. There’s one definitive statement to put all other speculation to rest, only to be followed by why that discovery is flawed.

Then, you have your parent testimonials of things that worked for their kids, followed up by “hoax alert” for those same treatments. Then, you see a flurry of passionate growling by comment leavers. Hmm, how do you know what to go with? “Following your gut” has never been more important, but that’s kind of scary when you have your child’s future riding on your decisions. I’ve just decided that God has to lead me and fill in the gap for my ignorance.

Here are some recent contradictory and confounding headlines:

New Study: Autism Linked to Environment

Genes–Not Vaccines–Linked to Autism

Despite Ruling, Vaccine-Autism Debate Won’t Fade

High Testosterone in the Womb Linked to Autism

Autism Linked to Higher Precipitation Levels

Autism Cases on the Rise: Not Just Due to Changes in Diagnosis Criteria

No So-Called Autism Epidemic Just Better Diagnosis

No Evidence that Restrictive Diets are an Effective Autism Treatment

Autism Diets Help Parents Recover Children

I personally like Autism Linked to Parents’ Mental Disorders because even though I don’t think I had any mental problems before all of this, I’m pretty sure it is now making me looney. My, we have to keep a sense of humor about this! The truth is, no one really knows what’s up with autism and every kid is different so it seems that the “answer” is a moving target.

Want to know my opinion? I think there are many paths that may lead to autism. I think for children like mine, there’s a genetic vulnerability that exists. Something starts going on in the gut where good bacteria gives way to populations of bad bacteria, then the immune system starts reacting to environmental assaults, toxins, allergies and vaccines. The brain doesn’t know what to do with those things, and eventually stops working correctly because it’s not getting the nutrients it’s supposed to. But, if we can reverse the chain of events, and provide the proper nourishment to the brain and get the body responding in the way it’s supposed to, a child can be recovered from autistic symptoms. At the same time, behavioral and educational early intervention is needed to form new brain pathways and get a child caught up.

Everybody has a theory. Maybe one day we’ll have some facts we can all agree on. Until then, I’m going with autism is caused by Wi-Fi internet. Uh oh. I better get off the computer now!

No one can comprehend what goes on under the sun. Despite all his efforts to search it out, man cannot discover its meaning. Even if a wise man claims he knows, he cannot really comprehend it. Ecc. 8:17

The Colors of ‘Autism’ and Money-Saving ‘Vaccinations’

My eyes have been playing tricks on me, especially this fall when autumn decended on us. I’ll glance at a magazine and see a title with the word “autism” even though the word is “autumn.” It’s happened to me a few times. I guess my radar is up, and with autism in the news more and more, I try to be aware of the reports. Just a few days ago, I got the latest Parenting magazine in the mail, and it had an article about “Vaccines: Fact and Fiction,” which I’ll get back to in a second. Then the Cookie parenting magazine came (we got a bunch of free subscriptions due to unused flier miles) yesterday and there on the cover was another vaccine article! “Money-Saving Vaccinations”! Er, uh, ha… Vacations. Okay, I’m officially too obsessed.

Now, if you’ll humor me with my soapbox… I must vent a little bit. So, I read through the latest Parenting article on “Vaccines: Fact and Fiction,” and my blood began to boil. Just like the past vaccine CDC-skewed propaganda the magazine has put out, this article was so horribly one sided and so boldly tackled the “issues” people are raising about vaccines that apparently are fiction and unfounded, and tempered them with the “there’s nothing to worry about here” FACTS that vaccines do not contribute to autism, and they’re not toxic, and they’re perfectly safe, and the best thing to ever happen to human kind, and don’t be a dope and stop vaccinating your kids or God forbid do an alternate schedule because you will wipe out humanity!!! There have already been 131 cases of the measles this year, after all, by you selfish parents who didn’t get the MMR.

Just a few months ago, actress Amanda Peet stirred up little controversy with her article in Cookie where she said, “Frankly, I feel that parents who don’t vaccinate their children are parasites.” Recently, Parents magazine also had an article about vaccines and said:

Vaccines are extremely safe and are responsible for the eradication of a host of life-threatening diseases that occur in childhood. Still, rare cases of complications make good horror stories and can give even the most rational parent a good case of the jitters. Keep in mind that, for most babies, the benefits of these vaccines far outweigh their risks.

Yeah, okay. For most babies, vaccines may work out just great. But, I would say a lot of parents out there would take issue with the cavalier statements here. The problem is that you don’t know if your baby will be one of the babies who don’t handle vaccines well until it’s too late. It’s a little like playing Russian roulette. I remember having a conversation with a chiropractor friend when Josiah was two months old. He said he didn’t vaccinate his kids because he believed vaccines were not safe. I went home, researched it some, and was especially troubled by the Hep B vaccine–why would my child need that, I wondered. I voiced my concerns to the doctor. She promptly told me all the wonderful things that vaccines have done for humanity and that the risks are so rare. Well, what are the chances that anything bad would happen to us, I thought, and I trusted her.

To this day, I realize that Josiah still may have developed autism whether he had been vaccinated or not, but I have a sense from the research I’ve done, it likely played some kind of role. It certainly didn’t help. There’s no autism in our family. There is some autoimmune stuff. I’m so bummed that I can’t go back and undo what I did. I thought it was the right thing to do. I didn’t think my child would be one of the children to get autism. Who thinks their child will be the one to die from SIDS, develop allergies, asthma, ADHD, childhood diabetes, or an auto-immune disorder–all which have pretty convincing evidence that there’s a link to vaccines, their viruses, or their toxins?

I’m about mid way through a facinating book called What Your Doctor May Not Tell You About Children’s Vaccinations by Stephanie Cave, M.D., and I wish I would have read this balanced approach to the story before I had my baby. I wish I could have been better informed, because so few parents ever get to read about the debate that rages. Instead, the other side gets quickly dismissed. Just once, I would like to see a magazine publish an article that had a DAN! doctor talking about how they are trying to recover kids from what they believe was in some way a vaccine injury and then the counterpoints by the other docs. Let the parents then decide for themselves who to believe and make the best decision for their children.

I’m so concerned with the greed, fear, and cover ups that seem to be keeping the government from trying to find out the real cause of this autism epidemic. What is going on here when perfectly healthy babies are going along normally and then something happens to them so profoundly? In record numbers. Someone must know something. We mommas got to save our kids and demand truth and safe vaccines. I think Jenny McCarthy has it right. I would like to see more doctors stand up and get a voice for their opinions on the matter too. Parents have a right to hear both sides. I hope my gut is wrong on this issue, and vaccines have nothing to do with it. That’s all I have to say about that. Soapbox over. Thanks for bearing with me!

The One-Year Anniversary

It’s amazing the power of a word. One year ago today (August 25) the word “autism” was breathed for the first time in our home. It hung in the air like a dense fog that took my breath away. I will never forget the scene… we had just put Josiah to bed and we returned to the kitchen table to visit with my husband’s mom and dad who had arrived a few hours earlier from North Dakota. They came out just a week after they had been out here to “get some car repairs” (but I think that was just the excuse to come back to talk with us face to face). We were laughing and telling stories when, suddenly, the tone changed.

Joe’s dad, courageously and graciously, told us that they didn’t want to alarm us but they just wanted us to promise them that we’d get this checked out. “It will all probably turn out fine,” he said. This feeling of flushing when through my body–like when the phone rings in the middle of the night. I wondered, “What could possibly be wrong?”  He continued, “We think something’s not quite right with Josiah. Compared to when we were here a couple of months ago, he didn’t seem to be as interested in us or in his cousin, and we had noticed little things before like how he was into wheels, was turning lights off and on, and was looking strangely at the fence… He hit his head on the floor last week and it didn’t even hurt him.”

THE “A” WORD

I remember my husband saying, “You mean you think it’s like autism?” Mom and Dad shook their heads.

“But, he claps and he has eye contact, and he’s not like that,” I said. “That’s a horrible sentence for life.” What I knew of autism was minimal, but like most moms, when the Parents magazine would come out I read about watching for the signs of autism, and I sure was glad my kid didn’t fit the criteria. And, I remembered when Josiah was just months old challenging his pediatrician wondering if he really needed all of these vaccines… what about what I read about autism? Well, the doc gave the pat answer, “Vaccines have save thousands of lives and any side effects are very rare.” So, I went forward with the vaccines pretty confident nothing would happen to us.

The next day after the table conversation, I promptly called Josiah’s daycare provider. Surely she would have told me if she was concerned about something. She said she kind of noticed he was behind other kids his age but that every kid developed at their own pace. It had been a bit harder to get his attention too lately, but it wasn’t a big concern for her yet.

Sure, we were first-time parents and didn’t have anything to compare things to, but the little concerns we had like why Josiah wasn’t “getting” the waving goodbye thing, and why he was suddenly fascinated with pulling little girls’ hair, and why he didn’t seem to be imitating my teaching of his body parts every bath night–they all seemed like things he’d grow into. The scariest thing we had to deal with at that point was that it took him until 17 months to walk, but once he got to it, we were relieved and on with life. Maybe he was just a late bloomer.

“PLEASE, LET IT JUST BE A DEVELOPMENTAL DELAY”

I remember being so scared by the uncertainty, and I had to fly out that week for a couple of days for business but just wanted to figure out what was going on get to a pediatrician for answers. We were in the pediatrician’s office within a week. He said, “Well, we could wait and see for six months…” I promptly said, “Or?” and he got us referred to a place to see if speech and OT therapy were needed. Thus began our long journey of testing and theories and agonizing days.

I don’t exaggerate when I say that literally within the next three weeks after the word “autism” was spoken at that table that our precious child regressed before our eyes–losing more words, losing eye contact, and not responding to his name. I had to put a blanket over Josiah and me to get him to even look at me. I was losing him and it absolutely terrified me. Still, we had no real answers. “Please, ANYTHING but autism,” I prayed.

“CAN WE GO ON? YES, WE MUST!”

Labor Day 2007 was a real low point. I so felt like I had been kicked in the gut over and over again that I physically could not stand up straight. I cried my eyes out into a bath towel. I had a feeling that life would never be the same again and as my husband and I struggled to catch our breath between tears, we wondered how we could go on. Maybe, just maybe, it was just a developmental delay or something less severe, we tried to assure each other. But, you know the rest of the story.

One year later. We were able to go on. We sifted through many bleak websites and books about autism and turned up some gems of hope to get us going in the right direction. Our son is improving through biomedical treatment and intense (ABA-Applied Verbal Behavior) therapy. and we really believe that he WILL succeed over the next few years and be ready for regular school. We believe he’ll have friends and a great sense of humore. Our faith has been tested to the limits with questions and doubts, but we still believe that God has a plan and loves us and our beautiful son. This year has brought out the best and the worst in us, but we are still standing.

In the midst of it all, our hearts have turned outward and we want to be able to help others somehow who find themselves in those early stages of this whole confusing ordeal. This post is really for you. Don’t give up hope. Do your research. Know you’re in for a long climb, but you can do this. You have to, and you can do all things through Christ who gives you strength! It will start getting a little easier. Through the fits and starts of adrenaline and action, you’ll learn to ride out the plateaus. You will find comfort in the fact that you’re not going through this alone.

Listen up, Government and Docs!

Today is the Green Our Vaccines March in Washington, lead by Jenny McCarthy and Jim Carrey, along with about 8,000 parents. It’s time to listen up. Do the studies. Be open minded about the idea that some children may be susceptibe to damage by vaccines–the ingredients, the live viruses, and/or the combination and synergy between the frequency and amount.

CBS interviewed Dr. Bernadine Healy, the former head of the National Institutes of Health and a member of the Institute of Medicine who breaks with her colleagues in this exclusive CBS News interview: Dr. Healy says the government has been too quick to dismiss the possibility of a vaccine-autism link, and that it should be explored with renewed vigor. It’s about time that a “mainstream” voice in the medical institution spoke up to suggest that we may not have all of the answers yet. Check it out. To see the full interview with Dr. Healy, click here.

 

Autism Yesterday

“Autism is reversible.” I remember in the early days of Josiah’s diagnosis coming across this statement on a Google internet search. It was such a different declaration than what so many books and websites said. I kept seeing things like, “Autism is a pervasive, life-long disorder with no known cure and no known cause.” What are you supposed to do with that? Well, many parents are simply not accepting that life sentence.

Last Thursday night, I went to a local library for an advance-showing of a new 30-minute documentary called “Autism Yesterday,” put out by Generation Rescue (the group that has adopted the “Autism is reversible” tagline). The documentary follows six families who were given the grim diagnosis of autism. Some were told their children would never talk and would have to be institutionalized. Well, all of these children are either recovered or are recovering from autism and have bright futures ahead. It was 30 minutes that takes you from heartache to hope. If kids are recovering, following certain approaches to treating this disorder, why can’t my child be one of them?

I’m a pretty reasonable person, and I’m not one that wants to be “taken” out of desperation by snake oil that claims to be able to fix my child. But, as we started navigating through what a diagnosis of autism meant for our child, I kept researching, reading, and talking with others, and in addition to getting Josiah into intensive therapy, we decided to follow the DAN (Defeat Autism Now) Doctor protocol that treats the big picture of what is causing the autistic symptoms. It’s a biomedical approach that looks at the underlying medical issues like gastrointestinal irregularities, food allergies and sensitivities, inability to detoxify properly, and brain inflammation. Mostly, treatment includes a dairy and wheat-free diet, a number of herbal supplements shown to address numerous problems specific to the patient, and detoxification of heavy metals as is evidenced by a series of tests.

Surprisingly, this treatment route incites a lot of heated debate between medical doctors and homeopathic doctors or scientists. Parents in the autism community get very snarly about it too–especially the “it worked for us” vs. the “it didn’t work for us” crowd. Fundamentally, it also raises a really big issue. Is autism purely genetic and can only be treated behaviorally? Or, are childhood vaccines and other environmental factors to be blamed for contributing to the rise in autism in some way, and if so, the government has a lot of explaining to do. Parents have to follow their guts and do what is right for their particular case, since no one’s is exactly alike. This parent weighed the facts and the testimonials, and decided to pitch her tent in the camp where there are stories of improvement, success, and even recovery from the symptoms of autism. If it doesn’t work out, I can at least say we gave it a shot. Only 10 percent of the parents who have a child with autism try the biomedical approach and stick with it. But, it is making a tremendous difference, and thousands of kids are recoverying.

So far, we’re already seeing significant changes in our son. His eye contact has returned significantly. He’s been so loving and he’s giving and asking for hugs from us. He’s also developing some peer relationships and playing with a little girl at his school that is also 2 1/2 years old–his therapists tease him about having a little girlfriend. Tonight we went on a walk and he was having a big belly laugh at a barking dog. He kept looking back at us and enjoyed us teasing him with his stuffed duck. He held out his hand for me to hold it as we strolled along. Back in October, we walked this same route and my husband and I were thinking back to how terrified we were that he had regressed to the point that I couldn’t get his attention when I ran out in front of him and called his name. No smile. No eyes locking. Just blank. He’s getting better now. Small steps, over time, yield big results. I’m trying to be patient.

Our next step is chelation–trying to pull heavy metals and toxins out of Josiah’s body, very slowly and safely through herbal means. We see the DAN! doctor to go over results of testing on Friday. One of Josiah’s urine tests that just came through over email showed that he has elevated levels of arsenic, mercury, and lead in his body, which is pretty typical in autistic kids. Where did all this junk come from? Well, from what I’ve read, pesticides, pollution, food, water, air, and unfortunately, some ingredients in vaccines. The role that many people believe the childhood vaccines play is that they can assault the system of a young, developing child and mess up the detoxification process in a vulnerable child. This hasn’t been “proven,” but studies have come to that conclusion as a piece of the puzzle.

Bottom line for me, I wish I could go back and at least do the vaccine schedule differently, and I wouldn’t have gotten the Hepatitis B vaccine which is totally unnecessary for a child at that age whose mother does not have this disease. It is given on the first day of life, and there are two additional doses before six months. Why was I not better informed? Maybe it would have made a difference, maybe not. I’ll never know. But you can be informed and make thorough decisions, remembering that your pediatrician doesn’t know everything, and you have rights to vaccinate your child on a different schedule–or in most states–opt out completely. There’s my soapbox. I’m sure I will have many that disagree with my stance, but there are lot of parents who have kids with autism that will nod a big “yes” to what I believe. At any rate, I’m hoping to one day stand before you with a true testimony that “Autism is reversible.”

 

 

 

Vaccines, vaccines, and more vaccines

I find myself becoming a bit of conspiracy theorist these days. I was even recently bold enough to print out information about vaccines and give them to four of my co-workers who just have had or are set to have babies. I also called the White House and my congressman this week, as actress Jenny McCarthy requested of parents across the nation, and asked for the resignation of the director of the Centers for Disease Control and Prevention for her total incompetence during the autism epidemic. I’m a rebel, y’all! When something happens to you like autism, you feel like there’s got to be something you can do to keep it happening to someone else. You want a WAKE UP CALL!

 I now know enough about childhood vaccines to know that I know too much. I truly wish I could go back armed with the information to make a more educated decision, and it may have changed the outcome for my son. Or it may not have. After him having had 36 jabs in his first 20 months, I can’t go back and I will probably never know. But I do know that he has high levels of metal and toxins in his blood that came from some outside environmental influence.

What’s strange is this newer, crazy classification of autism is not the classic “we knew something was wrong from the beginning” kind, but it presents itself somewhere in that 18-22 months age for thousands of kids who seemed to be developing pretty normally until something tipped the scales. That’s our little boy. We have videos of him teasing us by popping his head up over the table and buzzing like a bumblebee at about 16 months. He brought us books, and called “MOM” from his crib in the morning. What happened to all of that? How did his brain get damaged? That’s the million dollar question that thousands of families with similar stories are asking.

I say, at least it’s worth taking a moment to pause the rigorous schedule of vaccines, get some real studies going, and stop playing Russian roulette with one in 150 kids whose autism may have at least had an underlying genetic issue that may have triggered autism due to the vaccine load. At the very least, there needs to be screening for immunity and genetic health BEFORE they bring on the vaccines within the first minutes of life.

Whether the government, CDC, and vaccine makers are involved in a cover-up, knowingly or unknowingly inflicting brain genocide on a generation, or just sticking their heads in the sand and hoping it will go away, it’s all wrong. We deserve better. Our kids deserve so much better. God, help this generation!