December

I am thankful for this road I have travelled, because had I not walked it, I wouldn't have seen the things I have seen or met the people I have met...

This phrase has been in the forefront of my mind this week.   

Let me tell you, that from the place of deep fear and am get that I lived in to this place of thankfulness, what a difference it makes in my quality of life. 

And it isn't even a choice anymore to focus on the positive.  It's all there is:  these autism moms who are in my life and understand everything about me, to the good in the community that surrounds me, to the miracle of Andrews undeniable recovery happening before my eyes each day--- there's just so much good, it's what I am swimming in.  

Truly, I think, what if he never became autistic?  And life carried on the path I was on.  Sure, I would have been spared a lot of grief and heartache, but things weren't perfect.  Life has challenges and we were deep in ours before autism came.   And I had very little perspective compared to now.   Autism has made us all healthier and happier.  Ha! Can you imagine? 

Oh yes there are days I am mad.  I hate mandatory flu shots and I get very frustrated with some of the very evident damage that has been done to our bodies before I woke the hell up.  It's hard because I know my children are growing up in a scary, poisonous world and I certainly did not give them the best shot at healthy lives ---especially Ava, who lived the longest with my poor decision making.   All I can hope for is that she will make better choices for herself and her family some day.  My children will know the truth and can be informed, powerful decision makers in their lives. 

So, I am thankful. Still.  Maybe not zen like October, but thankful.  I cannot imagine my life without my fellow autism moms.  I have just entered this circle of powerful, amazing women who I have known less than a month and yet they are already a second family.  Because they know.  More on this, later :) 

Andrew.   Andrew has had a hell of a month.  He is now on 5- MTHF five days a week and has finished two vaccine clears.  One more to go.  He is blossoming, literally, before our eyes.  He is curious and is actively exploring everything.  He spends NO time each day isming.  None.   From most hours of his day two months ago to no hours.  He hugged Ben.  He seems totally enchanted by Ava.   His sleep is the best it's ever been.  He's so social.  He still prefers the quiet of his SonRise room to the chaos of the living room, but quite frankly, so do I.  He's rediscovering his love of books.  But instead of stimming on the turning pages he is looking at the pictures and following points to items on the pages.   He loves his SonRise volunteers and is thriving in this type of therapy.  

He's awesome. 

SonRise and Biomed - November's Update

With two deaths in our family, the trip to SonRise, then a house of sick people, one right after the other, we were a bit delayed beginning Andrew's SonRise program.  

Now that we are in the swing of things, it's looking different than I had anticipated, but it's more beautiful than I could have hoped for.  The friends of ours who have graciously given of their time each week to make this commitment to our sweet boy? Amazing.  For all the BAD in the world I have learned about this year, I swear there's ten times as much GOOD surrounding my family.  

Andrew has had many miracle moments in these last weeks.  He's gravitating away from his stop signs (!!!!!!) and toward blocks, puzzles, and shapes. He is interested in exploring all different toys and objects, independently or when presented with the item.   He vocalizes constantly.   He is sleeping better.  He shared a toy with one of his volunteers.  He climbed on his sister's lap. He reached up to me to be lifted from his crib. Major, mini miracle moments.  Those are what we live for in this house.  

We saw a new DAN doc who does homeopathy.  We are attributing many of these gains to these interventions. Vaccine clears.  High folate.  Very exciting stuff. 

It's so interesting, when you go see a mainstream doctor, all allopathoc medicines and interventions are tauted.  Declining vaccines or other interventions is strongly frowned upon.   And then you go see a DAN or naturopath, and it's common knowledge that vaccines are damaging and antibiotics too.  So you worry about being judged for DOING these things.     But this doctor was totally accepting and zen and I was very comfortable with her. 

So life keeps moving forward here, day by day, exploring SonRise therapy, administering supplements, loving our special moments with our sweet boy, and holding faith for his future. 

We have a PPT with the school coming up right after the holidays.  With my awesome therapists in my court and a wonderful SonRise program at home, I am not the least bit concerned or worried about this.  Anyone who knows me personally is going "wow" right now, because worry was my favorite hobby. THANK YOU OPTION INSTITUTE!  I can actually mentally choose to not physically worry.   Wow!  Is there a greater gift an autism mom could have???

I can get in discussions about autism with people from all walks and thoughts, and my blood pressure remains stable.  Lol!  I can walk away from debate, inform without fear, or converse with ease on the topic of vaccines.   My whole life has changed.  

So in a nutshell, our update is this: thank you for helping me get to SonRise, because even though Andrew is still recovering from his vaccine injury, I have recovered from mine.  

Sunshine, rainbows, happiness, and SonRise, the experience.

I am not in any way trying to minimize this really amazing experience by joking about rainbows and sunshine.

This isn't about fake.  This isn't about fluff.

I am being armed with real, powerful tools to go home and create an effective, loving program, personalized for my sweet son.  This program has recovered hundreds, thousands of autistic children, yes.  Because our brains are moldable.  Our cells are constantly moving.   The body tends toward healing.   And then there is the miracle of the "will to live" that  is a powerful force indeed. 

And at the same time, I am being taught that if I do not fear a life with autism, I have nothing to lose.  If I let go of disappointment, I have nothing to lose by dreaming big. 

For example:  last Halloween, we went trick or treating.  Ava and Ben happily ran from door to door with their friends.   Andrew found a stop sign, made a beeline for it, and hung out there gazing at it for the remainder of the evening.

On that night, while I wasn't embarrassed as perhaps some might be, I was sure disappointed. What was wrong with Andrew that he couldn't "get it"?  I didn't know it was autism yet, but I thought, will he never have this experience?    And this whole last year I have looked back on that night with sadness and anger.  

Now, I can look back at that night knowing that stop signs, street signs, are Andrews way to deal with this crazy world he has to navigate.  The lines are always straight, the colors bold, the shapes familiar and always, always the same.    Seeing a sign in the confusing darkness of that night, he found a way to be happy. 

And now, I dont have to dread Halloween anymore.  If one of us can be happy with our trick or treaters, and one can be happy watching our little street sign lover, we have no problem.  Everyone wins. Everyone has a great night. 

I now I have the tools to live my life as a mother of a special child. I did not come into the world equipped for this. He didn't come with an owners manual, none of our kids do.     I am so thankful to those who have blazed this trail of autism before me. 

And then I am being armed with tools to connect with my son.  So even if, there is no recovery at the end, it's a hell of a journey anyway, and we will all be better for it.  

Thank you for getting me here. 

You may be asking, what about your rage against the vaccines?!  You are angry! You are mad! 

I don't know how I feel about this topic right now.   What I do know is I have spent a large quantity of time and energy on it that is better spent elsewhere. We as parents have a duty to educate ourselves.   But I cannot live with the anger I carried anymore. Not if I want to work from a platform of peace and happiness so Andrew is more attracted to my face, more able to notice my presence, and not feel negative energy emanating from my every pore. 

It's time to move forward. 

My Gram: Arlene and Autism

We buried my grandmother today.   My grandmother had Alzheimer's, had been in a nursing home for a year, and before that had full time care in her home for several months.  

My Gram, as far as I know, didn't know much about autism.  It wasn't something that plagued her, her children, or her grand children's generations. It was not even on my family's radar. 

The only connection between my grandmother and autism is this: My gram came with me to each of the twins well baby appointments their first year.  I needed her to hold the first baby after his shots so I could hold the second baby for his.  She was happy to come for the outing and to help out. 

She'd say "Horrors!  Why do they have to have so many shots?!"    I would roll my eyes privately.  

I don't remember if she came to the 15 month appointment.  The one that changed everything. But every other one she was there, comforting one of my sons and helping me maneuver through twin well baby visits. 

My grandma loved babies. She had three daughters, six grandchildren, and six great grandchildren. She was a daycare provider to many. A foster mother to 27 babies over the years. 

She would be appalled at what has happened to my babies. 

I told her, at Christmas last year, that Andrew has autism.  We didn't have a formal diagnosis yet but he had just passed his hearing test, so we knew we had ruled out the only other option.  It was still so new that it hurt to say it. 

She was confused, she couldn't believe it.  Autism? In this healthy happy boy that she knew?  I never brought it up again, and I am sure she didn't remember.  

Another thing I am sure of though, is that if she were here, really here, she would be my biggest cheerleader as I fight this uphill battle to recover him.

And goodness, who better to look to for how I should love this child to health?  Her unconditional love is weaved into my heart and it is so easy, therefore, for me to wholeheartedly love and accept this boy.   Which is the very foundation for healing him, in SonRise. 

What did she do when we screwed up? Loved us more.  What did she do when we were sad or mad? Loved us more.  No matter what we did or said she had more love to show.  In her love, we thrived. 

And now we must carry it on. 

Back in Control

So since deciding to do SonRise and reading all the books, life here has been pretty good.   Andrew had a minor regression last week when he got a bit of a cold, but he seems completely back to himself now, and I am relieved.

We took down the baby gates in our house and are letting him freely explore all three floors.  In the basement is his SonRise room.  We had a bit of a scare this week when we couldn't find him for a couple minutes --- he was down in his SonRise room in the dark.  PLAYING WITH BLOCKS.  The next day I found him playing with his bath toys in the empty bathtub.  He is precious and so, so happy.  Playing!!!!!!

Now that things are calmer here, I am beyond ready to take back control of me.  I stopped seriously dieting and exercising in the spring and took it easy on myself with our busy therapy schedule.  I definitely ate to medicate again.

That's over. 

Last year when I ran, I would tell myself how strong I was, how powerful, how committed.  

This year all I can hear when I run is "You're okay. You're okay. You're okay."

And I am.  And it's time to take care of me, now that everything is okay. 

I found the right people, right away, immediately even.  Took a leap of faith and plunged into healing him in every way I could.  And it's paying off. And I will never stop.  

I am learning that the people in my life who surround me are interested in learning how to protect their children and their friends children too.  That means everything to me. There is SO MUCH GOOD that has come from Sweet Andrew's injury that with every day it's harder to look back. Of course I wish he was never injured, but to not know about the GOOD in the people around me?  Not sure. 

That's a gift you have all given me, how do I thank you for that? Keeping me buoyed in the present by your kindness and support, and facing tomorrow knowing you have my back. 

Thank you for your love.  It propels me forward.  

And the more peaceful I can be, the more zen my boy is, and the most responsive and happy.  And that's what we want for him. 

Thank you, thank you, thank you.  

Andrew, as he is

First and foremost, a huge thanks to all of you for your contributions to Andrew's new SonRise program.   The Start up costs are all set now!  Further contributions will go toward my next trip to the Option Institute or supplies for his program.    Thank you thank you thank you.  We are overwhelmed by your support.  

Peace.  That's all I feel these days, peace.   Wow is it welcome after this year. 

One of the fundamentals that SonRise teaches is that you must come to a place where you accept your child, as he is, and love him totally.  Even if he were not to improve one little bit more.  Being 100% accepting of him as he is and content in it. 

That is pretty easy for me to do right now,  he is so awesome.  He hugs me spontaneously, he kisses.  He's so happy, aware, able...  

Could I have had this attitude before we did biomed?  Could I have accepted the little boy forever who was so unresponsive we thought he might be deaf? Who couldn't make eye contact or bear much touch?  I really don't know.  Thank God we found biomed and he has been so responsive to each and every intervention. 

My little boy. Such a sweet little boy who laughs and sings and is beginning to prefer people over objects, not just me, others! He is blossoming before my eyes.  He does new things every day that literally amaze us.  

So yes.  I am 100% able to stop fighting against myself and accept Andrew, my bright little sunshine, exactly how he is. To stop comparing and daydreaming of recovery. To live in the now with him and be fully present, accepting, and loving.  To celebrate whatever he does when he is surrounded with my attitude of total acceptance. 

It's been a year, it's hard to remember him as anyone who he is now, and I am choosing to be OK with that.  I am through grieving.  I am through with the anger and the sadness consuming me, literally around me like a dark cloud day in, day out. I am choosing to move forward.  

Andrew's SonRise Program -- A Request

Family and friends, 

As you may be aware, our son Andrew was diagnosed with autism this last January.    Ever since, we have had him in full-time therapy with CT's Birth23 program.   He has been doing intensive ABA for six months without a single gain.  His therapists and I have spent many hours brainstorming and problem solving, but he remains resistant to ABA therapy. Without an effective therapy option, Andrews future ability to gain meaningful relationships and function to his highest capacity will be limited. 

We sought out other options (of which there are few, unfortunately), and we found what we believe will be a good fit for our family.   The program, called SonRise, is based on the philosophy of joining the child in HIS world, so then he might venture into ours with us.  It is a gentle, intuitive approach that we are very drawn to.  Even in using just some of the very basic techniques we are seeing wonderful rewards from our son.   Lindsey is going to the Son-Rise start up programOctober 6-11.  The high levels of success acquired by those who have done this program give us hope for Andrew's future. 

The problem is that to run a SonRise program for Andrew will cost several thousand dollars each year.  With Lindsey home with the kids, this would be a big challenge for our family.  The monthly costs for the biomedical supplements that have helped Andrews body and brain heal have made things tight.  While we believe in doing for ourselves, we also believe that our family and friends desire to see Andrew succeed as much as we do.  

We are asking, if you are able, please consider making a donation to Andrews SonRise program.  Every single cent donated will help fund his program.  Please do not feel obligated to donate if you are unable or uncomfortable in any way.   We do not wish to offend anyone with this request, or make you feel awkward. It is very difficult for us to humble ourselves to make this request.  

If you are able and willing, please consider forwarding this request to anyone who might be willing to help.  

We thank you, 

Lindsey and Michael Articolo

PayPal for Andrew's SonRise program:Lindsey.articolo@hotmail.com

Address: 3 Amaryllis lane, South Windsor, CT 06074

Phone: 860-648-9359

Sent from my iPhone

What's Happening

After months of stressing because Andrew is resisting ABA therapy .... Hardcore resisting....  Shaking head no, signing "all done", saying "no,no, no, no, no!" Over and over.   And losing play skills when our primary goal has been to teach him to PLAY, we have had to make some tough decisions. 

Through my research, I found an alternative therapy to ABA.  Through fate, my sweet friend Eileen happened to know someone who has done the program. 

The rest was basically convincing Michael.   But it didn't take much, because there aren't a lot of choices, not good ones!!  We can continue forcing ABA down his throat and be stressed before, during , and after those many hours each week.... Or we could find something else. 

Our therapists are Angels.  They've supported me over this last year in ways you can't imagine unless you've been there. They are autism experts, they've worked with dozens and dozens of kids with special needs, and I have only ever known one: my son.  They've assured me and lifted me up day after day after day.  I adore each of these women, and it will be hard to say goodbye.  What they do for a living, it's a special calling, and you have to be a special person to do it. 

But it's time for something different for Andrew.   It's called SonRise.   The idea, very simplified, is that you must join the child in his world, build trust and love with intensity, and he will venture into your world with you. 

I know. Sounds a little kooky.  But if you spend any amount of time watching the videos of these therapists break through with these kids, you will believe.  

Many recover and go on to a life without autism. This therapy requires their brains. 

I go to the training in October.  More to come. 

Julys update

It's almost as though every event in my life so far was a clue, a stepping stone to the full circle where I have landed, that is my current space. 

When I was in the latter part of my teens I worked in a new age bookstore partially out of pure rebellion against the way I grew up.  Partly for the shock factor.   

And I learned a lot more, incidentally, about my spiritual self in those years than I expected.   I learned to watch for synchronicities.  I learned that there are no coincidences, that I manifest my own truth and purpose.  I learned about visualization and positive energy and true peace. 

Ten years later I found myself revisiting these notions with Oprah (ha!) as I battled some fairly nasty PPD after the boys. 

And I am now deeply and truly depressed, and for the first time in my life it has nothing to do with the chemicals in my brain and everything to do with the fact that my baby is simply collateral damage to the world, sacrificed unknowingly, by me, on the alter of the greater good. And it's simply too much to bear. 

It's a year later, nearly a year since the cat burglar that is  regressive autism started stealing my baby, bit by bit until his smile was gone, his eyes flat, and I knew something was terribly wrong. 

I am tired of explaining why we would have rather gotten whooping cough than autism. 

I am tired of syringing supplements into him 8 times a day, though they are undeniably helping his health, and pulling him out from his isolation, giving us bits and pieces of him back. 

I am tired of worrying every minute of every day how he feels right this moment, and what will become of him.  How much Andrew will we get back? We have already lost a year of what we could have had. When will I stop counting my losses?  

And if I fold and say, as long as he's healthy I am ok, am I dooming him to never fully recover? Am I dooming myself?

They say this is a marathon, not a sprint and that couldn't be more true.  And I have only gone the first mile and I am tired. I want the damned finish line. 

So there's this thing, this program that promises to help me help myself and my autistic son.  It is all about embracing and joining him and reshaping the way you think about the world.

And I dare say my brain could use even more re wiring  than Andrews.  That damned dtap damaged me even more than him. 

Why I'm blogging.

Why am I blogging?

Because when you have a child, diagnosed with a life changing condition, there isn't a rule book to follow.  You don't know what to you.  There is a ton of information, but you have to go looking.  You have to find the right people. The right places.  The right information.  You have to dig, and it's freaking scary.  Meanwhile, surviving with your normal day to day activities, pushing through for all of your children, it's extraordinarily overwhelming.  More than you can imagine unless you've been there.  Making meals, changing diapers, cleaning the bathroom.  Very difficult.

When one day your world is normal and average, and yes, not that easy, but still, you're pushing through and headed down one path, and the next day your entire world is changed, it's very unsettling. 

When you learn that people you trusted (not just individuals; I'm talking institutions) are not trustworthy.

When you learn that what turned your world upside down and what HURT your child, forever, was a decision that YOU made.  That's a hell of a load to carry.

THAT is why I am blogging.


I have been writing a post in my head for a good week now.   Having children with disabilities is isolating.  We don't have as many playdates as we used to have because of our therapy schedule. We still get out and about quite a bit, though, but we usually have a therapist with us, so my socialization is limited.   So, it is hard to not view the therapists that come into your home weekly (or more than once a week) as your friends.   But they're not. They can't be.  They are working.  And I am very very blessed to have a great team of ladies working with my boys.    I am even more blessed to have family and friends who reach out and lift me up, and try to understand.     But it is still an isolating thing.  We don't know a single other child with autism.   Not but over the internet.  Not personally.  There are many who share my story, or similar stories, but they don't know ME.  And I don't know them.    In the day to day of caring for a child with special needs, it is ALL me.   Every syringe of supplements. Every diet-prepared meal and snack.  Every distraction from stimming, and every bit of work all day long on strengthening his muscles and his brain.  It's all me.  How could I not feel isolated?  Every decision I make impacts him in an enormous way.

I have a beautiful, sweet, and smart 12 month old nephew.  He came to visit me this week.  He is so sweet and full of joy and so beautifully, wonderously ....   healthy.  At 12 months he is developmentally on par with Andrew, not terribly far behind Ben.   And while I am thrilled with him, and he is joy to me, and I love him deeply, it hurts a LOT to watch such a healthy little boy.   When my boys were 12 months, they were healthy too.   What I wouldn't give to turn back the clock and make different choices.   I can't help but be reminded of that when I am with him.   And I hate that.  (Ry, Ashley, these are my issues, not yours.)

He effortlessly points at what he wants to communicate.  We just spent five months, FIVE months, teaching my son to point. 

It isn't fair.  I wouldn't wish this on ANYONE.  I will be devastated to know more boys with autism as the years go by; it's inevitable.   But it isn't fair.  We make the same choices as so many other people and Andrew has to pay a price that is way too high.

Isn't he getting better? YES.  Because I found the right people and the right information, right away.  But at BEST, we will have lost a piece of him forever.  And at minimum more than a year of our lives while we abandoned everything else to fight for his future.   Do I appreciate his milestones all the more because they are so hard won? Yes of course.  And we celebrate.  But the cost?

Andrew's milestone dates in my head are not the date that he learned to walk or talk or went to this place or that place. His milestone dates in my head are the date of his sedated hearing test, his diagnosis, his first DAN appointment.   My memories of his babyhood are not of being in love with a beautiful infant, but of a mercilessly screaming infant in pain because his body was already reacting to the poison we were injecting him with.  He wasn't happy for the first 8 months of his life.  He didn't sleep til he was 14 months old.  If you can count 10 pm to 6 am sleeping. 

It's not his fault he's sick. It's mine. It's the world's. 

And I HATE IT.

And that's why I blog.

Every Day is his Best Day Ever

That's what's happening now.

Every day is Andrew's "Best day ever!". Every single day he's doing more, saying more, looking more, expressing more, laughing more. With every day that goes by we are getting closer to getting him back.

Look at these videos. He spent his afternoon today running back and forth through a sprinkler. No big deal for a two year old, right? Well, this two year old probably wouldn't have noticed a sprinkler two months ago. ANd he definitely would have spent his entire afternoon trying to escape from the yard. Today, he made a few halfhearted attempts, but mostly, he PLAYED.

http://youtu.be/onzKUozlJnM

And then, my friend Jen's cat, he kept trying to look into the cat's eyes, and laughed with glee.

http://youtu.be/IVIfysR8DAM

That went on for ages. It never gets old to hear him laugh.


We got Andrew's lab tests back. Next week we go to the DAN for interpretation but preliminarily, he has two genetic mutations that are very very common in kids with autism. Indicates, as I've been saying all along, that he is having problems methylating, processing toxins.

Our whole family will have to be tested.

I'm so happy to have this major, major clue in working toward recovering him.


Focusing, hard, on the little victories that maybe aren't so little: Our Occupational Therapist not believing the changes in him in a two week period since she last saw him. His BCBA pronouncing how he's seemingly at a different level of awareness this week.

The smiles. Oh I am a sucker for that smile.

Outside

"Outside" he said to the therapist as she walked through the door today. "Outside!"

"Outside?" She asked Andrew. "We will go outside."  

And we did.  we went outside and hopped in the car and went to tour our police station with our local mom's club.  

Andrews communication has been so outstanding, we are all thrilled.

And then, he proceeded to cry, for the entire hour we were at the police station. You guessed it, he wanted to be "outside".  He cried so much his entire body was bright red, there were real tears coming out of his eyes, I had to use the tissue on his nose. 

I had nothing to distract him, nothing to make it better, because all he wanted was to go outside, and he can finally communicate that need to me, and he didn't understand why he didn't get exactly what he wanted. Because he's two.  

All of the  Autism moms have told me that tantrums will come, to expect this. But I didn't believe them, because Andrew has basically not cried since last summer. He doesn't care about anything enough to cry about it. Until this week.

So, how did I keep my cool for an hour of him crying? I guess because I can see the beauty in it?   Because all it is to me is progress?  To me it shows that his awareness of the world and his ability to communicate our growing, and that is what we are after.

But, A sincere apology to all of the moms and children who had to listen to it this morning!

New highs for Andrew, new heights of crazy for his mother.

With every day that goes by, we are reaching new highs in Andrew land.  His awareness is unbelievable. His eye contact, we couldn't ask for better.   He is communicating both verbally and nonverbally extremely effectively, and Is suddenly terribly motivated by a number of things, where before, he lacked almost any motivation.

Where before I made it occasionally thought, "what autism?", I now think that all the time. 

It's impressive.  It's ... Healing.  His body is healing, and his brain is able to work the way it should have been working all along. He is picking up where he left off at 15 months climbing all over the place like a monkey, babbling like crazy, singing happily, and lots of smiling.

I'm playing with his brother.  Melt my heart. I'm not sure who's happier about it me or Ben. 

He knows that a cow says moo, he knows " row row your boat " and the scream at the end. He has even Strung two words together.

So here we are, the road to recovery. And I am so glad that we found our path. So thankful that my boy is healing quickly.

I am working very hard to focus on every positive day, every positive interaction...

And yet, something inside me knows, that even once he is recovered, autism is going to be a major part of my life, forever.  

I know, that for whatever reason, we have been chosen to go forth and make sure that this happens to as few children, families in the future as possible.  Autism is treatable and preventable.

As true as Andrews healing is, so is that statement. Autism is treatable and preventable. This is my new truth.

The hours I spend with him in therapist, the hours I spend working tirelessly with him, the hours I spend researching, reading, highlighting.  It's going to count, and it's going to count for more than just Andrew. Not that he isn't enough. He is. Getting my son back is the only thing that matters anymore. But no one around me will have a child with autism and be able to say, "I wish I knew…" 

No Evidence of Any Link

I've had so many people contact me privately since I started blogging.   Everyone wants to know what I know about vaccines.   I certainly have learned way more over the last six months than I ever knew before.

Friends, here is documented proof, of vaccine - induced autism:

http://adventuresinautism.blogspot.com/2007/06/no-evidence-of-any-link.html

I am hoping this blogger doesn't mind my linking to her blog, which I find freaking amazing.  Her most recent blog post is sure worth reading.  It's like being in my brain.

I read her blog and I cry and I think: I wish I knew! I wish I knew!  I wish I knew a year ago what I know now, I would have made such different decisions.  So friends, read.   Read, research, and think.    I read the dates on her blog, and I kick myself for not educating myself before I had children.  Before I allowed one of them to become disabled - maybe for life.

I know I said I wouldn't talk about vaccines, after that first vaccine related post.   But how can I not?  My decision to vaccinate my children, to do the "responsible thing" and believe that nothing bad would *really* happen to us, changed each of us, forever. 

And of course, I am thankful for the friends I've met on this journey and the knowledge I've gained.  

But I would rather my son not be 1 of the 50. I would rather he not have had his brain and body damaged, probably forever to some extent. I would rather these precious moments of his babyhood and toddlerhood have been spent in happiness with me and his brother and our family, instead of hours on end with therapists, and worrying, and maybe in pain, suffering in silence. 

So sue me.

Read, educate yourselves.   Do what I didn't.  What I would give anything, ANYTHING to go back and do. 

I've been hesitant to write, as a mom in my closest social circle is experiencing real and true tragedy in her life right now: The stuff nightmares are made of.   The stuff that makes me so thankful for what I have, and feel too guilty to complain about my whole and complete walking and talking sons.  And yet, I have to write, so here we go:

Ben had his 6 month IFSP review done today, and he met every single speech and language goal we set for him. Hooray!   He needs an OT consult, and there's a lot of work to be done with our guy to get him to where he should be, but his development is exploding, and I am not worried about him.

Andrew's IFSP was re done yesterday, not because he's been on this plan for six months, but because the therapists are changing the hours on me  - which I am mostly OK with.  Taking some away, adding more.  I love his whole team right now, so I am very comfortable with the changes.  I just wish there was a way to have one of them here with me all day long!    Andrew had met several goals on his IFSP, ahead of schedule, and that was thrilling to see!

So, with the Generation rescue grant, Andrew is currently on:
- daily multivitamin
- daily probiotic
- 1 digestive enzyme per meal
- fish oil
- vira stop (as of tomorrow).
- Calms 4 Kids tablets at night

He has an epsom salt bath every night and castor oil rubbed on his stomach every night in a clockwise circular motion.

I have a chart on my fridge to ensure that I don't miss anything.

Since the beginning of the Grant, we've seen huge improvements, as I've mentioned before.
But this last week we are definitely seeing some huge sensory regressions: Toe walking, tons and tons of stimming.  

Trying to figure out the source, but it may just be another little phase.

Seeing the DAN doc was thrilling for me, particularly having read everything she recommended we read, and doing things we already do.   However, a new thing in our home since the DAN doc is we are now going organic!

Signed the form this week to release Andrew's records to the school district.   I did this without hesitation.   He will, no doubt, require extra help 11 months from now.  With Ben we have some time, though I will probably release all his stuff too. 

I don't even want to think about school for my babies!

Oh!  And the fence!  After an extremely contentious phone call with a board member the day before the HOA meeting, the meeting was still pretty darn climactic.  Debate over whether autism is a mental or physical disability, whether I'll start a daycare once I have a fence, whether our homeowner's insurance will cover renegade children sledding down the hill into our fence.    But, many neighbors came, and we got the approval!   It wasn't exactly unanimous, but it was uncontested when the vote went up.

Little victories.

Brothers

From the day after they were born, when they were together, Andrew snuggled right into Ben.  He got such peace from being near his brother.  He was such a miserable baby.  The funny thing, though, is that as soon as Ben had any sort of a say, he'd push Andrew away.    Ben really "appreciated his space", so to speak.   Didn't want too much cuddling or loving or snuggling.  And he'd push Andrew away.

That lasted until ...  well...  I guess when Ben became mobile, he had a lot more interest in his brother.  Andrew started crawling at 8 months and Ben not til 12 months.  So around their first birthday, Ben really started to love his brother. 

This love, it manifests in "Dives" onto brother, and brother sandwiches, tackling, tickling, trying to spoon feed brother, trying to wake him up.   Ben doesn't even want to leave his room in the morning unless Andrew's coming, too.

Andrew's love of cuddling Ben was dissolving around then, as then, as Andrew became more isolated as his autism took over, he really didn't even seem to notice that Ben existed.  

Only in the last couple of months does he glance over at Ben's tray, what Ben's eating.
And then the last couple of weeks, glances over at Ben, if he's being loud, or to see what Ben's eating.
And then this week: Smiling.  At Ben, when Ben sings or smiles or runs, or who knows what.  He sees Ben and he smiles, for who knows what reason, except that they're brothers.

Sooooo....

It's been a while since I wrote.  I've written.  Whatever.  I need to be better about it, but am having a hard time carving out the time these days.

Andrew's services are about to increase - big time.

We received a Generation Rescue grant and are a month into that. Will be seeing a DAN doc soon.  Very anxious to get details about that and also anxious to actually go!

We petitioned our association for a fence for our wandering boy - and so far have lost.  But we have a few tricks up our sleeve.  That is to be continued.

Mostly, we've really been revelling in how well Andrew has been doing. There's a lot of appropriate playing going on, not as overwhelmed by crowds. He's looking a lot more when you call him.  (Or, when *I* call him), he's becoming more manageable outdoors.   He's happy, making so much eye contact.

I went to bed last night, after a wonderful weekend with him, including a very successful birthday party (and the first "holiday" in ages) that he participated in and seemed to really enjoy!  Most holidays lately I've cried, there's such a gap between where he is and where I want him to be.   But not this weekend.  It was beautiful.   I went to bed thinking, he's almost better, he's almost better...

And then there was therapy this morning. We had yet another assessment,   this one to build him a new ABA program, and she assessed him beginning at 0-12 months and he failed most of the questions.   Sigh.

Reality.

I asked that this time I don't need to be told his "developmental age".   It does me no good.

Tomorrow is their 2 year appointment.   Michael is coming with me and I am very thankful for that.   We will be refusing vaccinations.  I know now beyond the shadow of a doubt that Andrew's "roseola" was a severe reaction to his DTaP.   And that when I, 3 months later, allowed him to have his MMR, I sealed his fate.   The boys will not be vaccinated, not until I come to a place where I feel like I can do so without any negative ramifications.

I don't spend a lot of time being angry anymore. Not at the doctor, not at medical science, not at anyone.  Hopefully that part of the grief process is over for me.   I've become much better at living moment by moment with my boy, demanding as much from him as I can, and enjoying his successes.

This new world

This new world we live in is crazy.

A few months ago, air freshener was air freshener, vaccines were necessary evils, and M&Ms were great potty training candies.

This world I live in now is terrifying.

Not only is every single food a potential allergen issue for my sweet boy, but I worry about it being lesser so for my other two.

Food dyes.  In EVERYTHING.  Easter this weekend.
Vaccines harm babies, give them encephalopathy, autism, and can even kill them - SIDS.

Plastic is full of toxins. Microwaves are the devil.  My fruits, vegetables, whole grains have to be organic and gluten free and even then, it's questionable.

Even the freaking lightbulbs!  The mercury in the lightbulbs!    The chemicals in the town pool this summer!  And the sunscreen!   The shampoo in his hair, the lotion I rub on him, the laundry detergent I wash his clothes in.

I used to not care when my babies dug around in the dirt and got messy and smelled and tasted and explored.  

Now i have to worry about pesticides.  My neighbors lawn treatments.

Now I'm just positively terrified.

Here it comes again

It seems this grief is cyclical.    I will be doing fine, thinking I'm fine, that I've made peace, pushing forward, for days and weeks, holding onto hope for our future, and out of no where comes the wave of grief, knocking me down.    It comes when I haven't slept enough, am fighting a bug, whenever my defenses are down.  

It's here.    The only difference this time is that I know it will pass.  I know I will forgive myself again and cling on to new hope and be OK.    Before, I really didn't think I'd ever rise above the pain, the anger.


The boys 2 year appointment is coming up. I find myself fantasizing about smart ass things to say to the doctor when the subject of vaccinations comes up.   All the things I'd like to say, about how I trusted him, about how with 1 in 31 boys becoming autistic, he should be educating himself on less rigorous vaccination schedules and immunocompromised children.   On diets and treatment recommendations to help those of us affected.  About how mothers trust him, and he needs to be trustworthy.

Maybe I am wrong and he will say the right thing, or comforting things.   But I doubt it. Our only dialogue since all this has been through a nurse, and he told her to tell me that he will "grow out" of it. 

Such blatant disregard and disrespect.  Disrespect for this illness, disease, whatever you want to call it, that has us tortured as parents, watching our boy suffer to break through his inflammed little brain on a daily basis.  Disregard for the hours and hours of therapy we're putting in, the countless strangers coming through our home every week, the expensive treatments we're trying ON OUR OWN because medicine hasn't caught up with the Moms of autism.

Not looking forward to this visit.  

Slightly stressed

We all go through it, it's not just for special needs.

We all want what's best for our kids and to set them up for their best possible futures.

When Ava was a baby/toddler, etc, I had no choice but to work, so she was in daycare.  She thrived on structure, as she lived it.    She was very social and used to group activities, and all of that.

The boys aren't.  Yes, they are absolutely socialized, they are used to playing with other kids of various ages on playdates.  But beyond a general schedule of how the day goes, there isn't much structure to their days.

As such, their therapist thinks that since they will need to begin special ed when they turn three.  Well, maybe not they, maybe just Andrew, but I am guessing they'll both qualify, that we need to slowly and surely get them used to class and structured settings.   It makes sense.   Slowly take more classes so in a year, they are fine with being in school full time.

Gosh, what 3 year old should be in school full time, when he has a mom at home who would rather play with him all day?   I just don't get it.

I guess I am questioning whether the slow pulling apart from mom needs to happen already.  Andrew  is incredibly attached to me: I get 90% of his smiles and interest and eye contact and love.  Isn't there something to the fact that he needs me?

Would I be doing him a huge disservice by not starting him in full time special ed preschool?!

I don't know about the rest of you, but I'm ready for Spring.

We drove to Schenectady to see Mike's Gram this weekend, and the last time we'd driven to her house was Thanksgiving weekend: When we thought Andrew was deaf.   The waves of terror and anguish I was feeling in November came back over me as we pulled up her driveway.

A hell of a winter. A long and short winter, of waiting: for tests, diagnoses, changes, improvements.

Spring is coming, though.

Today I put the boys in the backard swings, and had to adjust the straps, as they'd grown so much.  All I kept thinking was, the last time I put you guys in here, the word "autism" wasn't even part of our world, wasn't even anywhere on our radar.  Sweet blissful ignorance!

Andrew is doing better every day, still.  Knock on wood, we've kept him from getting sick for almost a month now, so just one period of regression in the last two months, which has enabled him to make huge strides.  SO much smiling, singing, learning to play with Ben.  There are a lot of moments in every single day where I think "what autism?" 


Today was a marathon day of therapy.  We have a lot more like this coming, and he handles it better than I do!  I'm so tired. 

Today we started Fish Oil.  Words are coming, I hope! 

Celebrating

This week, I shared that video of Andrew with the therapists that came to the house.
They couldn't believe it was such a recent video.   They see the signs, same as us, but he was so engaged in talking with me, it's stunning.

They say, just as I feel, the fact that he wasn't gone very long is going to work in our favor.

Initially, when we got the Birth to Three referral for the boys, we waited a really long time (almost a month) for their assessment.  Almost a month again for an IFSP.  Finally, I switched agencies.

When our first therapist came out, I had a little boy who would barely look at me.  He wouldn't let me read to him, he wouldn't sit on my lap for long. He wouldn't let me help him do puzzles.  He wouldn't let us sit in our dining room chairs.  He was basically just a shadow of who he had been and he was pretty unreachable.

That was the day after Christmas.  So just two months later, I've got a little boy who will make eye contact much more frequently, who loves to sing with me, loves being read to, loves playing with me and Ben.    He's definitely still autistic, but there's so much to celebrate:  He is in there, and he's coming out more every single day. 

The therapists say it's good that we recognize that and celebrate every little progress.  And I really can, because it impacts every minute of our lives together here, whether or not he'll look at me!  But there are moments, I just want him well NOW.  But it's only been two months.  We are on the fast track to wellness, and we'll get there.

So far, it's been the GFCF diet that's made the biggest change in him.    We started probiotics and epsom baths.  I think I'm seeing some nice changes from the baths but it's hard to say.  Not sure what I'm doing next: probably fish oil.  Any thoughts?

Failure

When we first got the autism diagnosis, and even when we just suspected it, it really felt like nothing but a huge red flag of failure.

Failure to spend every free minute playing with him, so he became autistic.
Failure to read to him every day, if I had, maybe he would let me read to him now.
Failure to take my prenatal vitamins every day. I could have prevented this.
Failure to think for myself: gave complete trust to my doctor and allowed my children to be immunized according to the doctor's schedule.
Failure to pick the right spouse and genetically setting my child up for autism.
Failure to see my child change right before my eyes until he was so far gone, anyone could see it.

.... Maybe if I hadn't taken so many hot baths when I was pregnant.
.... Maybe if I ate more organic food when I was pregnant.
.... Maybe if I exercised when I was pregnant.

Was I being punished because I never wanted twins in the first place?  
Was I being punished because I cried for three hours when I found out I would have a house full of boys, not dancing princesses as I had always envisioned?
Was I being punished for making some terrible life choices in years past?

Was it a combination of everything? Some of it?  Or none of it?


I had to work through a lot of guilt and blame.  But here's what I know:
Even if it's my fault that he's autistic, it will be me who brings him back.

After months of wondering, I finally went back and watched every video clip I have from August-November.  No one would have ever known.  I am not a bad mother.   Even when he was at his most symptomatic, he still had so many moments of clarity and presence.  I have the proof.  Attaching a video here from late October.  You'd never, ever know the child in this video would be diagnosed just 6 weeks later as autistic.  In retrospect, he never looks when I call his name.  But he is engaged in conversation with me throughout.

I didn't sit back and do nothing. The minute I was worried, I got Birth to Three involved.
The minute I got a diagnosis, I started doing research.
As soon as I got answers, I implemented a plan.

And I love him.  More than anything.
That's not failure.

Happy and Hopeful

Today we had a MOMs group outing to a bounce place.  I have been so nervous about outings with the twins primarily because Andrew is a big wanderer, and usually tries to head out the exits at every opportunity.  Meanwhile, Ben loves to keep me in his sights, so he doesn’t get much playing done while we chase Andrew and try to redirect and engage, and it rarely happens.

Today though, was fantastic.  Yes, he wandered a little, but it was much more predictable and controlled.  He really seemed to enjoy being in the bounce houses and got in the groove of throwing balls with the other little kids.  Well, they were throwing them, the balls came back down, and he knocked them on the floor.  It worked.     Also, several times if Ben and Nonnie were playing somewhere else, Andrew went looking for them.  

It was like being with a different kid.   And following two days of really great eye contact and lots of smiles, and almost all totally-appropriate play,  I am nothing but hopeful.

So far, he’s gluten and casein free, has been on probiotics for 9 days, and tonight we start Epsom salt baths.  Every couple weeks we will start a new supplement or treatment or idea.   Therapy is also really helping me learn how to teach him to play appropriately (today, we worked on throwing balls). 

I’m very thankful for all of you who reached out to me publicly or privately after my first blog post.  Thanks for supporting us in this journey.

On Vaccines. Just this once.

Big Fat Disclaimer: I am brand new on this autism road.  I know next to nothing.  I've been reading with every free (ha) minute I have, but I have tons to learn, and reserve the right to change my mind :)

I was that mom.  The kind that really, really, really tries hard not to judge, but can’t help it, due to her own insecurities.   I thought I knew better.   I have three kids, so I know plenty, right? A girl, two boys, all the bases covered.  And TWINS to boot.  I know stuff. 

I was so, so wrong.

I am only bringing this up because I brought it up in my comments on FB. I promise we won’t talk about vaccines again.  Or at least, only in passing.

I thought, these selfish girls, not vaccinating their children because they subscribe to this crazy theory that somehow it hurts children.  How dare they endanger MY children, who are fully vaccinated, who I hold down while they cry and get stabbed with multiple needles every couple of months.

I trusted my doctor implicitly.  He was my doctor from birth, after all. MY birth, not my childrens' birth!   I happily drive 30 minutes for every single visit, with three kids, because I can’t imagine trusting my precious ones with anyone else.  If HE thought this vaccination schedule was the way to go, who the heck was I to think differently?   Had *I* been practicing medicine for 30 years?  Did *I* go to med school?  That's what I paid HIM for! 

Yet the moment this boy was diagnosed, from the very first book, internet article, contact on the internet, the first thing always always mentioned as the villain are the vaccines.  And when you do any digging, at all, it is so clear that these babies are being poisoned with mercury.  

Now, will vaccines hurt every single child, of course not.   But for so many,  1 in 54 American boys, who have this genetic predisposition to become autistic somehow, who are maybe sick when they get vaccinated or get too many vaccines at once, it wreaks havoc on their little brains and their guts and they are not ever, ever the same.  And any reading at all you do on the topic, you will find these very basic facts.

So just so you know, I was a very loud proponent of getting your babies vaccinated, on schedule, and basically doing whatever your doctor thinks is best for your kid.  A “necessary evil”, I called it.

I was very, very wrong.  For those of you I judged, I am sorry. 

That Day

There are days in each of my three children’s lives that I remember so vividly, I can relive long moments of those days on demand.   

With Ava, it was November 6, 2006. She was 19 months old. I knew from the minute I woke up that something was going to go terribly wrong.   Her substitute daycare teacher yanked her arm in such a way that it dislocated her elbow.  My baby was in pain, and the teacher didn’t mention it to the director, or have me come get her, and mentioned nothing when I picked her up.    That day I learned that no matter how freakishly intertwined my daughter and I are, no matter how much I love her and no matter how hard I try to protect her, I can’t.  The love I had for her, so complete, so full, indescribable.  Something broke that day, in me, and I began to guard my heart almost, from loving her too much, because I could not be that hurt again.  I thought I wouldn’t survive it.

With Ben, it was the day he was born – or, more specifically, the 24 hours after his birth.  We knew something was wrong with his kidneys, we knew he’d go to the NICU, but it was still awful when he went.    In recovery, the noises he was making – I just wanted someone to take him away.  When I went late that night to really see him for the first time in the NICU, I remember thinking – that’s MY baby?  I don’t know him.  Nothing in me could relate to him.  Even still, at 22 months, toddling around, healthy and happy as can be, I can’t believe he’s my son.  My other two look like me, and Ben couldn’t look more different.  He doesn’t cuddle, he doesn’t talk much, he is so different, but oh how I love that boy.  He’s a mystery to me still.

Andrew’s first was a hot, August day.  He was 16 months old.  He’d been acting different over the last few weeks, but not dramatically so.   We went to Burke Ridge Farms for ice cream and to feed the animals with our Mom’s club and my dad.  It was a very happy afternoon.   We got home, and I realized Andrew was beginning to run a fever.   It got high, fast.   He screamed, nonstop, around the clock, for four days.    And after he stopped screaming, he was never the same.    By October, his 18 month checkup, I knew something was terribly wrong. He was sick again, and I remember the doc saying that it’s OK to do immunizations when babies are sick, as their immune systems are already working, it will take the virus better.  I remember his concern on the MCHAT screening.   I remember looking at Andrew rub his fingers over the textured wallpaper and thinking, when the hell did this happen?  The examiners in my living room saying, so matter of fact, “either deaf and or autistic”.   His sedated hearing test in December, watching my baby go “under” and lay there so small, and just knowing – he could hear.   He’s autistic.    And then the day a month later in my living room, when my worst fears were confirmed.    He had been perfect.  Perfectly beautiful and perfectly smart and strong and wonderful.   Suddenly, so different.  We don’t know what his future will hold but we know we will have to fight to get him back in the smallest of ways.  And how many years will we lose in the meantime? 

I am writing again because I have to talk about how my son was taken from me.   And how I am going to work to get him back.