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

A wise move.

I've decided to shift my focus, it's been very difficult but I am off Facebook. Jack has started school now and is picked up and dropped off every day, right from our front door. He is so happy in the morning to go to school! What a relief this has been. I saved and saved to make this move and I did it, for him. I feel good today. I feel like my efforts have given him a better life, for the time. He enjoys the company of a small group of kids just like him, as he's grown - he's gets clearly frustrated as his words are not understandable yet. He has his own language - he tries to talk but the words don't make sense to us yet. I'm taking out the things that cloud my mind in turmoil and fear. I am putting myself and my own health in front now, so we can come together and be close. I am exhausted. Mentally, emotionally, spiritually, physically - just completely wrecked for the time being. I need to recover. I need a pause so I'm taking it.

I've been so lucky with this new school, they also have him attending their summer camp in July so he will be only away from school over summer for a month. Thankful is an understatement. We can already tell he's different. He's more present. He's making emotional connections and craving love from us. He's stimming less and less, every day. 

I love him so much, my beautiful sweetheart. He was diagnosed with autism exactly a year ago today, my heart grows bigger with each passing day because of this little boy.

The big DUH.

WOW. I had a major wake up call this last week. It has bee staring at me in the face, like a giant goddamn fucking big, bright, shiny THING! I mean, come on! Adrian and I have both struggled with our weight over the last two years. With the new business, Jack's autism diagnosis and Kane being born - things have been hectic and sad and beautiful. So, fast forward to Christmas - only 5 months ago. I began feeling soreness in my joints - especially my elbows and wrists so I attributed this to my ever-chopping duties to create Jack's menu. Well, long story short - I read Jenny McCarthy's first book just the other day called Louder Than Words. I read it in one night, fast, easy read and it was all about her son's autism diagnosis - so I flew right through it. She supplements his probiotic needs with something called ThreeLac. So, I Googled it. She also must have stock in Google because she mentions it about a million times throughout the book as being the best search engine ever. NOTED, Jenny. Noted.

So, ThreeLac is well and fine - expensive but a good probiotic from what I read. I then read a few other pages below giving it's cons. I was brought to a site stating it wasn't great, and so on and so --- etc. Whatever. THEN! And then, Candida and it's symptoms were listed. I had nearly all of them! JESUS H CHRIST. I have Candida Overgrowth! Love sweets and crave alcohol (beer) - YES. Sore joints - YES. Crabby - YES. Depressed - YES. Fatigue - YES. Prone to UTI/YIs - YES. And I give you exhibit A - my son Jack who has YEAST issues. DUH. Super duh, super biggest duh in the world fucking DUH WORLD. God, do I feel like an idiot. Also another symptom - brain fog, bad memory, etc- SUPER YES. I have all these things. Overweight, water retention and finding very difficult to move the weight off. SUPER, DUPER YES. I have found my problem! Here I am studying countless hours about this very subject for Jack and it's staring me in the face. I need to give up alcohol, sugar and dairy. TODAY. If I'm going to help Jack, and get our lives back on track this is what I have to do. I fully, completely understand now. Holy Fuck. I feel like I've finally seen some sort of LIGHT. Back to the research. 

Here's the plan. Take the first two weeks to detox from all the sugar, alcohol and dairy - I'm probably going to HERX. Just like Jack did. Candida DIE OFF. Can we spell FUN? (herxing is a reaction to the yeast dying off inside your body - when the bad bacteria die they give off toxins and it really upsets the flow of things. No pain, no gain buddies.)

Thing is - I have been struggling with a new decision to finally start taking really good care of myself for a LONG time. Probably before Jack was diagnosed a year ago. Having Kane really put it in hyper drive and I forgot to take care of my own body. It happens, I get it. I'm not going to beat myself up about how I got here. I know how it happened. It's the part about ending it and replacing old, nasty habits with good, happy habits. I don't think it will take long but the first couple of weeks are gonna SUUUUUUUUUUCK.

I don't want to feel like shit anymore. And I want to be present and healthy and HAPPY for my kids. This has to happen. It WILL happen.

It all starts now. 

Any day now...

In the beginning, this little blog was created out of insanity. My heart was breaking over losing my fifth (yes, fifth) pregnancy -- well into the second trimester. Jack had been diagnosed with autism not two months prior and I was caught between a rock and hard place. The hard place being this idea to keep our media company going. I truly believe that we would've been able to pull through it, had Jack been developing at a normal rate. But he isn't - it's taking a little bit longer. That's what I tell myself throughout the day when I realize how far away he is from his typical peers. But that's ok. He doesn't have to be something he is not, he has the right to be a child right now, because he is one. We take it a day at a time. 

If I hadn't lost the baby - she'd be about 40 weeks by now -- we'd be expecting her any day. My little girl. I never really found out what the sex was - but I know she was a girl. I could feel it. I never believed Kane was a girl, like all the scans said. They could never be sure, they'd say. I just knew it was Kane. 

I see little girls, sweet little baby girls wherever we are lately. They just pop out, always smiling and so completely saccharine sweet. This bitter sweetness wraps around my head, and I get teary-eyed. I can't help it. I allow myself to feel it. I wish I could have had her. I think about the way she'd look; maybe she'd have dark hair like me and long lashes like her Daddy. Maybe her eyes were green. This pain takes over me only when I succumb to it -- otherwise I quickly remind myself how much Jack needs me and his Dad, and how another baby might not be the best fit for our family. But you know, I don't know that. It could've been great. It would've probably been wonderful. She would've been my little sweet girl, someone to take to the shops or out to field to pick flowers, she'd have loved to play trucks with Kane and comforted Jack during a meltdown. I never had her, but I miss her. 

Hold on to what you have, however small or big. Sometimes the smallest of things can mean the most. I love you, baby. 

Jill

RECAP

I can report good progress; progress is the right direction - forward. Keep moving forward. We will take every forward movement with grace and appreciation - and try to savor it a little. In hallmarking this progress - I must blog. 

Jack is getting better at his speech therapy appointments; this means he's interacting more with his therapist and understanding and using more words appropriately. 

Also, he is using the potty on his own. He is going pee on the potty, standing up like a big boy and also is sitting for a poo. He has yet to actually go - but he tries while he sits. Super big progress - and the reason I've been forgetful to post. 

In lieu of this, we are working towards getting things in order to come home. That's all I will say about that because it is a huge, long process to break everything down here while trying to build something over there. I imagine an animated illustration of a city being deconstructed slowly, section by section---one floor of a towering skyscraper at a time. And simultaneously, a new city being built - brick by brick. 

Other news - Kane is starting to use meaningful words to my utter delight. He is asking to be lifted and says "UP!" to be brought closer to things he likes to touch, like the magnets on the fridge or the calendar hanging on the kitchen door. Just today, he said Uh-Oh while playing cars and watching them accidentally fall from the car tower. Blows my mind, this kid. He's not 18 months old yet and is not too far away from Jack in his language and comprehension. I'm SO, SO, SO completely grateful for him. He is my "ROCK" for lack of a better term -- he reminds me nearly every minute of the day that we need to stay strong and do our best for Jack - as a whole supportive unit - a true family. I've never felt so tested. I find it difficult to keep my cool 24/7 but I'm doing a damn good job, I think. 

Jack has a play date today with the neighbor boy - I'm so excited for him because Kane has been sick with flu all week and also teething - not a fun week to have off of school for mid-term break. 

We look forward to many more precious days of learning and growing - every day is a challenge and we will beat it - no matter what.

Love to you all,

Jill

Well, that was fun!

Yesterday, Jack went back to preschool. His teacher reported he was the best behaved of all of them. And while I find obvious joy in this - I have to say, this Christmas was pretty hard to get through. I masterfully (so I thought!?) scheduled a round of treatment for yeast and boy-oh-boy was that fun. SUPER NOT. Like He-Man style master of the universe GIANT NOT. 

Our days were filled with tantrums, meltdowns, aggression, sadness, frustration beyond belief peppered with moments of quiet chaos and long nights to recuperate for the next day's battle. Jack has yeast issues - let's just be clear about that. 

One might ask - what does that mean? What does that mean for a child with autism? What do you mean "treat"it? 

Firstly, yeast overgrowth is awful. You can take on any number of symptoms from grogginess to a yeast infection to thrush or gut issues, constipation, fatigue, etc. The list goes on and on and on. We know Jack has yeast issues because he test results showed so. Also, when he had the MMR at 13 months, he reacted with stomatitis - this is a bad thrush-like infection of the mouth. I remember calling the doctor about lumps in the back of his neck, at the base nearly in the nape but he brushed it off and told me not to worry. These are all big RED flags. Not every kid has a reaction to a vaccine. Some are prone to, kids like Jack are. Premature, major gut issues present from birth and predisposed to an intolerance to yeast. All these things play a role in autism, from my research and experience so far. So, to treat the overgrowth of yeast he has from his previous years full of wheat toast, cookies, crackers, biscuits and such - a high count probiotic is used to combat yeast and kill it off, then you can try to flush it out using other natural things like aloe vera juice. When the yeast dies, and it does die because the probiotic is so  strong and Jack is no longer taking in gluten so it's not being replenished. With this, you get "die-off" -- the yeast dies off and becomes toxic to his system. Gross. They do not go softly, let me tell you. It was really awful. He reacted just as I planned he would, proving that he still has quite a few issues with yeast. 

The idea is to heal the gut, replenish with nutrient rich food and supplements and work on speech/language to create an overall improvement. Once he feels better, he will learn easier and faster. So, the sooner this is done - the better. 

Understanding how the Gut and Brain Work