The scariest thing I'll ever do.

Well, it's about that time, as terrifying as it is to ask for help. I have to do it. I have to surrender to this "autism" and realize I need to dig deep and be brave. From this point, I've always thought change would come some what fast, or somehow we'd get the money together to afford some amazing therapy and everything would get better. He'd get better by not jumping up and down on his tippy toes for hours out of the day. He'd stop blowing raspberries through loose lips and foaming at the corners of his mouth (seriously-it's heartbreaking to watch). He'd stop flapping his arms and acting aggressive towards his brother and his parents - we're his punching bags no matter how many times we have the good behavior talk. He'd stop looking at spinning things out the corner of his eyes, walking closely by - this is a visual stim. He clucks and makes a choking sound while jumping that terrifies parents that don't know he autistic. HERE he is, this isn't too bad but you get the idea. What you see here he does sometimes constantly instead of intermittently. We are all nearly driven mad when he's like this. It's so hard to see him so uncomfortable. Powerless.

His stims haven't lessened at all, some days we feel he is getting worse as he grows and gets older. The stimming happens when he's happy, excited, scared, sad, and bored. So, all the time. He hasn't gained much language and speech at all. He still is in diapers and will be FIVE in November, I don't know what else to do. I am seeking advice from a nutritionist, a GP, a private practitioner, several speech therapists, at least four or five autism support groups, reading five books at once on recovery. They all say it takes time, and money - if you don't have these both then you can never truly begin recovery. I had saved up thousands of euros to fly home this spring as it's been four years, but I couldn't do it. I couldn't let Jack's care take a backseat to my homesickness. What mother would? The schools and services in Clare were very few and far between, the only speech therapy he received was from a non profit organization and only once every other week. Once. Every two weeks. Speech therapy is 70 euros per session, and the kids making gains are going every single day. This is so worrisome for me. 

Our lifestyle revolves around caring for our kids; Jack's dietary needs are crazy. He's on the best diet and I'm full time preparing fresh food every day all day long for him. He doesn't eat ANY crap, no preservatives, nothing artificial. Nothing. Very little fruit (low sugar), lots of vegetables and lots of good, clean protein. I make him applesauce and nut milks, bone broths and try to keep stock of what he needs, the freezer is full of broth for the boys. I do not buy new clothes, make up or anything unnecessary for myself or anyone else. We live around the food we eat, and the environment we live in. I do not have or use perfumes, special creams, anything that might set Jack off or irritate his skin. I make his laundry soap and softener from scratch using natural ingredients. We don't smoke. We don't drink - unless it's given, Ireland is good for that. We live a very frugal live, 80 percent of all income goes straight to Jack's needs. INSANE, I agree. 

We decided to move to a town where Jack could attend a special national school; a school where he would be understood and cared for. A school for "special" kids. When you move your family across the country it obviously takes a lot on money and I'm cleaned out now again. I read the other day it takes nearly $80,000 a year to treat autism through therapy and intervention. What going to happen to my boy? 

Do I need to sell organs on the black market? I guess I would if it meant I could heal him. Give him a childhood he deserves. He has days of screaming tantrums, clearly in pain -- agony. It's no wonder couples don't survive or parents break down. There is NO support for this invisible disease. 

Everyone says Jack is so beautiful -- yes, he's a great looking boy when he isn't contorting his face while grinding his teeth, and clenching his muscles so tight you think they'll snap. I'd rather have him covered in burn scars and be able to feel and talk and think and love - I'd take that over this fucking autism any day of the week. And I'm sure Jack would too. 

Stats now are saying 1 in 20 boys in MN are autistic -- what the f*ck is going on?!??! 
This is an epidemic, the CDC reports that half the population will be autistic by 2020 -- who the hell is going to care for them??

Sometimes, people tell me I should go out for a girls night to feel better or get a new dress or whatever it is -- get out and get a job! I'D LOVE TO DO ALL THOSE THINGS but it's not in the stars. This is NOT about me. I have to care for my special needs son. The other day I met another autism mom, her boy is older but also has epilepsy and cerebral palsy. She hugged me like I've never been hugged in my life. I wanted to melt into her arms, she got me. She's been me, she's fought for her son. She has made her life about her son. I don't want my life back the way it was - I want Jack to have a big, happy life. More than anything I've ever wanted in my life. I want Jack to get better. I don't care about THINGS, clothes, gadgets, decorating, anything --- I couldn't care less. The only thing I dream of decorating with are pictures and paintings Jack has drawn me, he has yet to do one that has showcases that big brain of his. 

I don't want to be singer, or a writer, a NatGeo photographer any more. I want to be my son's healer. I want to see him get married, and SEE his love for his own family. That's it, I'll die the happiest person on the planet. I just want him to live a normal life, all this "autism is a blessing stuff" can suck an egg. There is nothing great about this. Those sort of people are not leaders, they accept things for the way they are told to be. I am not one of those people. I am a fighter. A warrior. I'll never give up, because I know Jack wouldn't give up on me. 

I have readers from all over the globe  - why, I have no idea. I don't know how it happened. Maybe it's other autism mommies looking for answers and advice. We are like that, you turn into a detective and earn a degree in Google research pretty darn quick. If it's anyone else that wants to do some good or sponsor a sick boy - I've got a sick boy and he needs help.

So, here is my scary thing....

PLEASE, whoever is out there, please help Jack. 

For me, my life goal and aspiration is to heal my son. He can be healed. It happens every single day. I've met parents and kids that have been recovered. They've lost their diagnosis. They might live in a tiny house with a shitty car but they are happy - they have each other. I want that. I want a tiny place, a shitty car and no money if it means Jack has recovered and can talk while leading a calm, happy existence.

We see a special doctor next week, one of the only doctors in Ireland that has experience with autism - he is from Canada (thank God). I used the last of my savings to get an appt scheduled, they don't mess around so they need a lot of money up front and it's not covered by any insurance. 

I am asking, pleading, begging, praying for help. Can you help? I am hoping my karma kicks in, because I've done some good things in my life.

If any one of you wants to send money to Jack for his treatment, you can do so through Paypal; our address at aocjill@gmail.com  -- thank you so much if you're still reading this. 


All my love to those moms out there fighting for your kids. You guys are my heros and my inspiration to lead a life without fear, only hope.

xo Jill, Jack's mom