Back to the drawing board!

Hello Everyone! 
A quick thing to get you all up to speed....I have had Kane Daniel at home with me now so updating the blog has taken a backseat but I am going to work even harder to keep it current. A major reason being is that we've decided to move home to Minnesota. Thank GOD! I am relieved, terrified, disappointed and blissful about it - it's a little overwhelming. After a series of HELLO-wake up! calls, we have decided to close it down and return home. 

In the meantime, we are struggling to pay bills. Another reason to move back, the economy is bad here still and there is work in Minnesota. Adrian tells me this is our last Christmas here, please GOD let it work out. 

Ideally, we move back next fall/winter. Long before this I will need to get Jack situated into a preschool with some sort of assistant and arrange for him to go to school and see a speech therapist. 

I will not have insurance for some time, unless I can arrange for it before we return. A speech therapist here charges 150 euros for the first consultation and then 50 euros for every session. And unless you have good insurance to cover these costs - they are quite expensive in Minnesota as well. 

The question that runs through my brain, day in and out. 

How do I make things happen without money? How can I manage this, get this or that, for Jack without money? 

I've thought about getting a degree myself for Speech and Language to help Jack and other kids that struggle with language and communication - but there again. Money! And lots of time! Both of which I have none of, at the moment. Haha!

The health services here sometimes grant allowances for kids with special needs but you have got to FIGHT. As hard as you can, I'm in the middle of a battle now fighting to get Jack funding for help with his speech - help with testing and blood work lab fees. 

And then there are the books - I bought several books second hand on autism and how it happens, what the finding and studies show. What interventions I can use and how to implement them to grow Jack from the inside out. 

I would never wish this sort of struggle on anyone; to see your 4 year old unable to speak in sentences, even ask for something that you know he needs - it kills you as a parent. I am wired to care and nurture my kids, keep them safe. 

How will he be safe? What if something happens to me? Or his Dad? What will happen? Who will fight for him? What if I can't get him home? What if someone tries to hurt him and he can't tell anyone. Oh my god, I wouldn't wish it on anyone. Autism, fuck you. 

That's reality and that's why I have to keep going. I hope all this will someday be a distant memory - a war we fought for freedom. The freedom to live in a world where we talk and laugh and tell jokes, read books and tell stories. I love you, Jack. Your mom's got a lot of fight left in her and she won't ever give up. 

xxx....until next time!

Peace and love to you all. 

New things.

A few new things to share:

• Jack and Kane play together for hours at a time now, either with toys or hide and seek - but during the whole time Jack is engaged and happy and laughing - all with his brother. It makes my heart sing, I feel my soul lighten. 
• Kane is SO smart. He is completing puzzles and pointing at things he wants and he understands how things go together. We are terribly proud and also relieved for him. He won't have to go through what Jack has. For that, I am grateful.
• Jack is doing very, very well in school and now when we play at Barneyz or a kid's club - he goes to interact with the children without being introduced or asked. 
• Jack is coloring now, he has never done this before or even noticed what it does - what he can create. He has to have a clean, white paper to get into it. No coloring books or lines already on paper - has to be fresh. So cute.
• A huge thing that happened last weekend was Adrian made contact with one of his other son's from his last marriage. They have been talking all week, and everything's changed. When we talk about moving back home, it's exciting and not stressful or sad. He is like a different man - like he has something to look forward to - hope for. It's made all the difference in him and I can't wait for us all to be together some day. Soon!
• Jack is learning new words every day, asking for things by request (no pointing or grunting) and also the stimming is finally calming down. It seems the older Kane gets and can play with him, the happier they both are. They are true best friends - again, SO grateful. 
• We went to the discount store for Halloween decorations and came away with a lot of stuff for only 10 euro. We've lit cinnamon candles and decorated the house for this coming Friday night when we take the kids out together for the first time. I think Jack will finally understand what Halloween is - we are so completely excited!!!

A list.

Sorry I've been away for a time - about a month. It's been a full one -- packed with ups and downs - sad to say mostly downs but hopefully on the up and up. Here's a list in no order of what's happened over the last four weeks.

1. My dear father and mother sent over money for Jack's tests - THANK YOU!
2. My dear friend and SIL Melissa sent over a gift card for the grocery store so we were able to get stocked up on some things for the kids. YES! and THANK YOU!
3. Jack is doing so great at his new school and is starting to already repeat most words back to you -- sometimes you have to ask him to say them back and sometimes you don't! GREAT progress! 
4. My bank debit card was used for a nice hotel stay in Greece - except I wasn't there. Double whammy - theft is awesome. NOT. 
5. After many days of dealing with the banks - we got the money back yesterday. THANKFUL!
6. Our business is tapering off and after receiving a letter in the mail from a solicitor regarding a comment made on a Facebook page --- honestly, we've been ripped off and taken advantage of for too long. I don't care to ever see or talk to another race organizer or cyclist again. I want to tell them all to EFF OFF. EFF you. (sorry - needed to get that out) Whew - better now. 
7. With the new changes in our work - I've decided to use my talents to shoot weddings. The last two I've done went super and all smiles, great feedback, paid on time, etc. -- All very positive things. I've decided to firmly remove my head from my ass and wake up - let this cycling thing go. I can't devote myself or my mind like I need/want to so I always feel like I'm half-assing it. It's either I half-ass being a mother or a career person. My kids come second never. Not even close, they get top to the tenth priority. 
8. Kane is growing up so smart and healthy - doing amazing things already. He's only 13 months old and walking, gabbing away, waving bye-bye and hello - pointing to things of interest and so affectionate and loving. He's also very much his own person - he loves to play with other kids of all ages and enjoys Jack's company most of all. I'm very grateful for his progress and overall health. 
9. We've been solicited for a few cycling jobs for next year and while this is good, I just want to cut the ties - Adrian has other ideas. 
10. I need friends. I have no driver's license - going on a year and I might crack up soon if I don't get it renewed. Get on it, Leonard!
DRAMA!

A GOOD DAY.

As I truly felt in my heart, Jack belongs in a "typical" Montessori and I can't tell you how relieved I am that I finally found the right fit for his needs. A wonderful, patient, sharp, sweet lady named Lynda has a small, rural school about 10 minutes out of town. We went to visit her on Wednesday, had a great chat, and I decided to start Jack that very next day. The top pic is of his first day and the second is just of today, so he's getting on brilliantly. She reports that he is very happy, playing away and exploring everything and making efforts to connect with the other children. Music to my ears, Lynda -- music to my ears! Everyone has "gifts"or something they are meant for - her calling is definitely child rearing and schooling. She is honest, trustworthy, and dedicated to my son, and him alone while he can be in an environment that is a perfect example of how children his age act and behave, while learning social skills too. 

As I type this - I'm crying. These kids have no place in the world yet. They are classified as "special needs" or disabled and for whatever true reason - the numbers are climbing. 

ONE IN TWENTY boys have autism. 

What's even stranger is the health service team that looks after Jack's "development" did not like the idea of me placing him into a typical environment - they were actually shocked I suggested different methods and approaches, after all they are the experts. 

So, after his diagnosis in late June, after a solid week of obsessive research - I found the forums online full to the brim with experienced parents with more knowledge of diet, schooling and development than any "team" I'd met. I wanted to find out what the other mothers had to say, what they would've done differently -- what they learned on this road through Autismland. 

Every single one of these "proactive" (head out of the sand type) mothers/practitioners/recoverers said TYPICAL. He needs to be in a typical Montessori setting. NOT an ASD Unit. 

So, then I said -- why? -- why are these professionals telling me, urging me, to place Jack in this ASD school? Why are they not listening to ME? His mother, hi - that's me - I'm with him about 95% of the time he's awake, and never away from him longer than a day at a time, mostly less. Why aren't these people listening to us? I never, ever wanted to take Jack to St. Anne's and it's absolutely for no other reason other than I truly believe he will learn from his peers. If the kids at St. Anne's can't walk, talk, or refrain from attacking each other - why would I send him there? 

Anyway--he's out of that school now and doing so much better only after two days!! So exciting!

If I can get his stool/urine tests done and start Jean's plan we will really be making good steps towards a recovery. And I'll settle for nothing less than a recovery. He will have an amazing life full of love and happiness - I could care less what he does with his life as long as he's happy and content. I just want him to realize how much he's loved. 

Thank you to my sweet, sweet sister-in-law BFF Mo for sending over a giftcard to get all of Jack's groceries this week -- it will really help out! Love you!

FUA

Today, I received the test kits for Jack's stool and urine samples. Not sure if this will happen anytime soon, sad to say as each of these are roughly 350 euros each, yes --- each. I'll find a way somehow. Right now, with work at it's slowest of the year and rent going up it's not looking good but if there's a will there's a way. RIGGHHHTTT?! 

It's no wonder that people are so FREAKING HAPPY when/if they get approved for the Domiciliary Care Allowance because at least you have a fighting chance to get the help you need for your kid.
It's funny how I used to give a shit about makeup or my clothes or fucking jewelry - I never really spent any real money on "stuff" and as a proud clearance Target shopper knowing all the days they marked everything down - none of that shit matters. (sorry for the potty-mouth). This is MY space to vent, so.....this sucks. A lot. I guess I have to remain thankful for what I have, count my blessings but some days that sucks too. I don't want to count my fucking blessings right now, I want to get these tests sent in so I can figure out why the hell my child blows raspberries for 10 hours a day and contorts his arms and face as he flicks his fingers and makes a choking sound while doing it. 

I want fucking answers. And I want to fix him. Fuck You Autism.

The. Stress.

Lahinch Beach, September 2014

And so it begins....the school year. With this comes stress, worry, doubt, and did I say...STRESS. I am at a loss right now trying to decide which is a better fit for Jack - this ASD unit or a typical Montessori where Jack will learn from his peers.

We went to the beach over the weekend and Jack was TERRIFIED of the water. He used to love it but things certainly do change, and while we hope for new, good change.....we cope and count the good things we do have.  

A love.

Can I just say that this little fella saves me every day. Saves me from ever giving up or getting tired, or losing hope. He makes my heart sing, my darling Kane.