Amazing Aunt Peggy

My message on Facebook to my wonderful, amazing Aunt Peggy:

Peggy, Jack and I love you so much! Thank you for your extremely generous donation to his speech therapy fund. I am so grateful and in awe of my beautiful family, I'll never forget it!

A Generous Gift

Yesterday, shortly after I posted the first video showing Jack's progress through GoFundMe - I received a 250 euro donation anonymously. I cried for an hour. Seriously. Like a long, hard weeping cry. Wonderful, selfless people are out there. This person was an old schoolmate of mine from Minnesota - my hometown of Aitkin!

She has a big HAPPY family and I have to say, it makes me so proud to know her.

I just want to say this to her; I want you to know I THINK YOU ARE WONDERFUL. Your kindness is still making me cry...as I type this even.

THANK YOU from the bottom of my heart. I hope some day we can meet up again and I can give you the BIGGEST hug because you are AWESOME! You believe in me and it's people like you that drive me to keep going, all my love to you and your gorgeous family!

Speech Therapy for Jack

Hello Everyone! Jack and I have been very busy working diligently on his speech using the tips and tools the therapists have put in place.

You will see the new confidence in his face, and his eyes. He has a new sparkle and it's all because of your generosity!

To clarify --- Jack didn't have more than 10 words (even echolalia, which is repeating) before Christmas last year-- only five short months ago! He was not potty trained and did not have any desire to be a part of a conversation, let alone show interest in playing, talking or being a part of our family. He has made a drastic, dramatic improvement in all these areas.

With the guidance of the therapist, we learned how to help Jack have the confidence and drive to potty train. He's not 100 percent there but definitely 70 percent of the way! I'm SO proud of him.

The hard part is the funding has run out now, and I want to continue this therapy and nurture his mind while we have such a good start.

If there is anything you can do, Jack and I really appreciate it. From the bottom of my heart, you all are making a huge difference in this little boy's life. I can't wait to tell him how this all happened - it seems like that day may be closer than I thought.

Jack and I love you all so much.

Sincerely,

Jill

Jack's GoFundMe Page

A Reader

I love books, I LOVE to read. I have been waiting and waiting for Jack to enjoy a good storybook, but he never really has. At every attempt, he either left the room or said simply, "NO".

Well, last night all four of us snuggled in the big bed before sending the boys off to their own beds. I wanted to read Adrian the prologue of the "me time" book I've started, Thomas Harris' Hannibal Rising.

I began to read aloud and Jack made a little nest next to me. I continued to read......for an hour. Daddy and Kane left the room shortly after I began but Jack wanted to stay. He watched me read while repeating words he knew along the way. It took everything for me to hold in my tears, he was SO interested and listened closely to each sound I made.

Today, I am celebrating this progress! Love you, Jack!

Jack's Day

Today Jack's new speech was "house" when we pulled up to our home from getting groceries. That's a new one!  He also worked on the alphabet and numbers puzzles today quite a bit. He knew some of the letters either from memory or possibly he already knew them and didn't know how to articulate them yet? Amazing! We were working together on the alphabet puzzle and he suddenly said "aae-ch" and then again after he placed the letter "H" in its home. I was shocked. It was all by himself, all from out of no where. This feels like a new lease on life. I'm going to work even harder now, he's an amazing boy! I'm so lucky to be his mom!

Also, mission HAIRCUT 💇 was accomplished after school. He did pretty good, and even after being waken from a nap in the car. At first, he fought it a little on the way there but was better because of his Dad. Adrian knows just how to handle him in certain circumstances. I'm also so thankful for a great partner, I'd be gray and at my wits end without his help.

My first post in 2016.

I've been busy. We moved again before Christmas in order to be closer to Jack's school. I read over my blog and remember that feeling of terror and fear. A ghost in every room, that terror that he'd be gone forever. This fear that I'd have to raise my second son to take care of Jack in order to protect him from the cruel people that are most definitely out there. There are many. I've met plenty.

That fear is gone now. Jack is who he is, and we've settled into this life now; my shiny, new armor is tattered and worn, dented in many places and still remains. My head is clear and calm, it feels so serene. When I close my eyes, and even in my waking moments of silence -- I feel calm. This is in part because of Jack's progress but also because of my new understanding, and my commitment. For over a year, there was this anger that lingered inside my every thought. I felt angry that my baby was gone, that he struggles so much for expression and to understand what's happening around him.

Today hallmarks a huge step for Jack. He's beginning to read. He loves to ask me what the words mean, how they sound all while staring into my face, dead set on my mouth watching my every muscle movement. This kid is working! Tears are running down my face writing this, pure blissful tears -- the tears I shed when he was born felt this way.... an overwhelming, explosive love.

He finally has a "thing"  -- animals and their names, he has a THING! It's animals! He's putting numeric puzzles together that are appropriate for his age! I can't wait to teach him to read.
I AM SO PROUD OF YOU, JACK!

Tonight, in the bathtub he sang a song about a toy octopus. He made up a song about the octopus, and made flying and swimming sounds, making the octopus swim and fly around. My god, he's playing with toys. How is this happening all at once? I feel like I'm going to burst. I will not go on anymore about what I've "given up" or any of that shit. I've given up nothing. He deserves my undying love and will always have it. So will Kane. I will do whatever it takes. I no longer need to hold on to this fear that used to drive me. I felt this ticking inside of me. Every passing day, another lost to autism. This is not so anymore. Jack is waking up, you can feel his heart in his eyes. He's right there, ready to jump out. He's so beautiful -- I never knew this could be so beautiful.

I am healing my son.

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