Nick is growing fast and I am finding that the years are zipping by far too quickly for my liking.
Although I tend to keep my head in the sand regarding Nick's future, I do on occasion *think* about what is ahead and have a mild panic attack. I have written about my friend who had a terrible car accident and suffered head injuries. Well, it's been nearly four weeks and she still lies in ICU. There continues to be progress, however, it is going to be a very long haul and as yet we don't know the outcome.
It is horrible, it is sad and I miss her.
It is a wake up call.
My Nick is going to need life long care and I live in a country where there is very little in the way of facilities for adults with special needs. The places that are available have long waiting lists AND they are not keen to take anyone with a diagnosis of autism. Basically, we are stuffed!
What to do?
What to do?
I don't have a problem with Nick living with me for the rest of his life, however, my life is going to be over before his. What happens then?
We could set up a small group home. It is daunting, although possible.
We could move to the UK. Too cold!
I do have a hankering to move *back home* to New Zealand. However, are the options there any better then here? Something to look at!
Moving country would mean losing our lifestyle and friends. Who knows if my first born would even want to move! Am I prepared to give it all up?
What to do?
What do you think?
What are you going to do?
We can think of "now" and what our situation is "now"
ReplyDeleteWe can think of our childs strengths, and how to progress them
We can champion change, and ensure that we form a community which is going to be heard
We can promote acceptance of diversity, so that as long as our child(ren) have some skill, talent or ability which is of value - they can be accepted in a workplace that values them for the skill, talent or ability they have
We can remind people, that of all the places our child(ren) can be provided with lifetime care... the most expensive and least suitable, is gaol, which is the worst possible outcome for our child(ren), society, and indeed, the gaol system itself. Let alone, the "community care" (or other non gaol based care organisations) that miss out so that funding can be inappropriately diverted to gaol.
Most importantly. We can empower our children to form the strongest relationships they can with people other than ourselves, so that our moving on does not leave them totally socially, emotionally and financially in the wilderness.
It's a huge concern for us too.
ReplyDeleteThere are facilities here in Australia, but with a 'high functioning' diagnosis, Billy won't qualify for anything. The fact that he has medication dependent epilepsy and auto-immune disease means nothing.
We too, are happy to have him forever, but what's forever?
I think it's great that you are planning and thinking ahead already, it's very brave. The only advice I can give you is to be flexible, I'm finding that every time I think I have the future sorted out for my children, something changes (usually due to the Government) and I have to start preparing back up plans. It's not easy. xx
ReplyDeleteI am sorry about your friend. My prayers are with you for her recovery. As for Nick, I think the idea of setting up a small group home is brilliant. You might find it daunting as a general concept, but if you start mapping it out with research into funding, needs, housemates, pooling resources with maybe 1-2 other similarly situated families and consulting an attorney once you've formed more specific ideas with research, it may be one of the best ideas you've ever had. You keep control and you set up what you want and know he needs for the future. At least some basic listing out what you'd need and a trip to the library or even online may make you more comfortable with it. And then you fight away the fear with a plan. Just a thought. xo
ReplyDeleteI think it is great, that you took the step to write about this. Of course Maya's situation is different from Nick's but I have these thoughts too. I don't have answers but I think it is wonderful that you are thinking about this. Keep doing that, although try not to let it consume you. The right answer will come to you, I am sure. Hugs!
ReplyDeleteWestie ~ You are right, we need to ensure that our children form other relationships, especially with those who will be a constant in their life. I am a wee bit stuck in that we don't have any family here... hence the reason for thoughts of moving back home. As for the other stuff, we can only but try!
ReplyDeleteBilly's mum ~ So, the grass isn't greener on the other side? We all seem to be stuck between a rock and hard place regardless of where our children fall on the spectrum!
Blue Sky ~ We have a huge problem here, in that, there is no assistance from the Government. Everything that needs to be done will have to be organised by us. We have to have a plan on the back burner. I realise that life in Ireland is also not easy and your Government must drive you crazy!
Karen ~ Thank you for your prayers for my friend. I am just so devastated. My friend also has a special needs teenager, who came out of the car accident with only a scratch! By the way, your 'just a thought' is absolutely spot on! I am fairly sure that this will be the way we head!
Danale ~ Writing it all down is helpful... cheap therapy and all that! I also think that is important to keep one eye on the future, although I admit that I try not to think about too much. Head is now back in the sand!!
Thank you for your comments.
I'm so sorry to read about your friend! How devastating! I will pray for her and her family. It can happen to any of us—in the blink of an eye.
ReplyDeleteWe have not done anything specific, and we should. Each of us have hefty life insurance policies. If something happened to me, Steve would have enough money to quit working. If something happened to him, Pamela and I would live off that. I do want her to continue a full, rich life and not what they offer at the special needs place down the street. I loved the ideas a bunch of us brainstormed at Autism Guide on Facebook awhile back. :-)
Walking... Thank you. Yes, you never know what is around the next corner! :(
ReplyDeleteThat's exactly it.. I also want Nick to continue living a life that is meaningful and full of different experiences. Are you able to *tag* me in the brainstorming section so that I can refresh my memory (my memory replay button is getting a bit rusty! I am presuming that this is an age thing!!).