Holes in the system

As we try to prepare for our sons future, we are realizing there are huge holes in the system.  So a couple of months ago I had a meeting with one of our supports, I thought I might as well ask about what happens when he turns 18??  Should be easy transition right?? Well think again.............

When he is 17.5 years old I have to apply him for disability so that he gets the funding he needs but also at that age he will start changing all his doctors to adult doctors, which seems wrong that he has had the same doctors since birth but that changes at 18?? And to top it off there are waiting lists so that should be interesting.  Those things we will deal with the best we can, but one area that I was shocked with and later have learnt so many others are shocked with is the services we will have to wait for.....................................................................................

Housing 8-12 year wait list
Respite stops and there's a wait list but we can pay our respite with his disability money??????
Services wait list
Day Programs not where we live so I will be transporting him

Ok so I have a huge problem with this.  He will go to school till he's 21 where he will learn as many life skills as possible for him to be independent as he can be, yet it could take up to age 30 before he can get housing??

Don't get me wrong, we would gladly take care of him at home for the rest of our lives, but we know that wont be what he needs, our small community doesn't have programs for him or transit which is one of the many life skills he learns at school.  So when he turns of age do we pack up our whole lives and move to a city centre where he can still have access to programs ect? Do we move our daughter who will be on her last years of high school so her brother gets what he needs??  Do we uproot everyone now? The only place I have help that I need from family and where my business is??

What about the people who care for their children till they no longer cant then do they have to wait 8-12 years??  This makes no sense to me. Why isn't there the housing and supports for people like my son, who will need assisted living? What about the people that need more help, cant help themselves at all??

I feel he may lose those important life skills that he will work so hard on in his high school career, we know he has a cognitive delay, we know he is no longer progressing in his learning, so why isn't there more help for families like ours and how do we try to get more?? Government?? Lol.

I have total anxiety over it, his whole life we have tried to make him the most independent person he can be, we make things and do things to help with that, a wonderful school so he can do the best he can do, even though its 35mins away from home, early morning and late afternoons home.  But we do all that so he can thrive and at 21 he's on his own with no supports, schools done, home with mom and dad and then what??????????????????????????????????????????????? Wait till he makes it to the top of the list, I guess that's the only option we have.

There are big giant holes in our system for him, for others, for families, and where do we start to fix it????

Spring Vegetable Cheese Tart

Another great recipe from cooking school with our family twist, kids and hubby really enjoyed it!! I ate inside but not phyllo because its not gluten free but enjoyed it as well.  Perfect for brunch, lunch or supper hope you enjoy it as much as we did. 

Spring Vegetable Cheese Tart

2 tubs of smooth ricotta, drained

2 eggs

2 garlic cloves, finely minced

1/2 cup grated Parmesan cheese

1/2 cup grated Monterey Jack cheese

1/2 cup grated mozzarella cheese

Salt and pepper to taste

8 sheets of phyllo dough

Olive oil spray

1 bunch of asparagus, cut in thirds diagonally

1/2 red onion cut finely

1/2 cup peas

1/2 cup cherry tomatoes cut in half

Preheat the oven to 400. Line baking cheet with foil and spray with olive oil. Lay onion and asparagus on baking sheet and bake until they have colour and are cooked.

In a bowl combine, ricotta, eggs, and garlic, add parm, mozzarella and Monterey Jack cheeses, season with salt and pepper, put in fridge until ready to use

Spray 9x13 pan with olive oil. Lay 2 layers of phyllo in the pan and spray the sheet with the oil, then fill the tart base with 1/3 of the ricotta mixture and 1/3 of onions, asparagus, peas amd cherry tomatoes then add 2 more sheets of phyllo and repeat 2 more times ending with 2 phyllo sheets to cover all drizzle top with olive oil and bake for 30 mins or until golden (can spinkle some parm on top as well)

So good hope you enjoy it too !!

Hills and Valleys

I often feel bad for taking time for myself or buying something for myself as I'm sure many of you do to.  Why is this?  I mean I work, I pay bills but if I want new shoes, there always seem to be more important things, like kids shoes or summer is coming and they will need new summer clothes. The thing is my kids dressers are full of clothes and I wear the same things. I think that's part of being a mom.

However the last little while I have put myself first. I am gluten free and they all are alright with that, I walk everyday and they are alright with that, I signed up to be a beachbody coach and with a bit of financial planning (no more eating out) they are alright with that so why do I feel so guilty??

Guilt must be the top feeling in a moms life, who knows why but we seem to all have it, men on the other hand dont seem to have it as much, they deserve things lol.  Which I truly wish I could be the same.

I'm enjoying putting myself at the top and the guilt is going away, because truly I'm doing it to help us all live a happy healthy life and I'm showing the kids that hard work pays off.  I'm 30 pounds lighter, not only in weight but I feel lighter in my worries and thoughts. I'm starting to get some confidence and when someone says I look good I say thank you, I feel good instead of ......................no I dont or whatever.

I eat well workout with 21dayfix everyday and walk most, who is the person I have become?  A better mommy, a better wife and a better friend. And you know what I'm truly happy!!  Im happy with myself for the first time in many years and its nothing to do with my children, I have totally done this for myself.  I still have a hill to climb but I'm doing it and look forward to the next valley.

beachbodycoach.com/jangatti check out my journey

Thankful

Being a parent of a special needs child, is not always an easy life, but I'm thankful everyday to have him.
Being a wife isn't always an easy life, but I'm always thankful to have a best friend.
Being a momma isn't always easy but I wouldn't have it any other way and I'm thankful to have such amazing kids.

Life isn't always easy, but we seem to get through it even at the worse times. I talk a lot about what's going on here and maybe come off as a Debbie Downer, or maybe you feel sorry for us, but please dont.

Our children are the greatest gift god could of ever given us. Our son is our angel.  He told me once when I asked him how I got so lucky to have him that he picked me from the clouds, he was in the clouds and saw me and wanted me to be his Mommy.  I truly believe I was given this amazing child for a reason.  Maybe to make people aware of disabilities, maybe to challenge me, but truly to make me a better person.

I often wonder if he was perfectly fine, if my husband and I would still be married?? He has made us both stronger, and closer because we are the only two who really "GET IT" and understand it. Family doesn't totally get it, friends dont either, but the two of us understand what we both go through all the ups and downs and that we can count on each other

So even on the worse of days I'm thankful to have the litttle family I have, and you know what, in the end, the day will end and a new one starts. We can do a lot if we take the time to be thankful, even if its a tiny little thing be thankful for what you have and hold on to that and you'll move to the next day and may be thankful for more.

Love and Thankfulness