Sunday, May 5, 2013

Hopeful Parents ~ What if?





Where to start?

I suppose the easiest thing to do would be to jump in feet first and blurt it out.......

I am going to visit a residential home for my teen. 

Damn, writing that sentence hurt far more than I thought it would.


If you have been following my Hopeful Parents posts, then you will be aware that a close friend of mine was involved in a tragic accident and she has been left with a severe head injury. She is no longer capable of caring for her 15 year old daughter who has special needs.

This has been a big wake up call for me and I have been asking myself the question, "what if anything happens to me and/or my husband?" It is a worry.

I realise that most of us don't even want to think so far into the future, however, as I am discovering, the future arrives very quickly. My son turns 14 this month. If he was walking a typical developmental path, he would be leaving home in just under 5 years!

As it stands today, my son will never be independent and will always need life long care. 

Scary thought, hey?

In my country, there is very little in the way of residential facilities for adults on the spectrum. In fact there is nothing in our province. The home that I am going to be visiting caters for adults with Down Syndrome and Cerebal Palsy.  It has a good reputation, although I don't actually know much about what life is like for those living there.

Do I want to put my son into a residential home? Of course not! I am happy for him to live with me forever. However, remember that my forever is not his forever.... and again, what will happen to him if he was to lose us. Circumstances change at the flip of a switch.

This home has a waiting list of 7 to 10 years, perhaps longer (and this is for the first person on the list!!). The cut off age for entry is 31. All that is needed at this stage is to place my son's name on that list..... just in case!

Will they turn my son away because of his autism? Well, that remains to be seen!

I will be visiting the facility with one thing in mind...... 

Is this residential home the right place for my son?



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* This post was written for Hopeful Parents


9 comments:

  1. I think you are very brave to be taking this step, most of us indeed do avoid it and it is good to know what is out there and to have a plan, even if it is for the very long term. I can imagine how hard it will be for you to visit a residential home, as good as they may be but I applaud you for nailing your courage to the post and taking this enormously brave step! I hope you will feel like sharing this experience with us after you make the visit. Hugs for you and Nick!

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    1. Dana, I am trying not to think about it too much as it gives me such a knot in my stomach. Thank you for your kind words and I will certainly let you know how it goes.

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  2. Lots of happy thinkings for you ~~~ ~~~

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  3. Huge step, and the hardest one you'll ever take. As someone said to me right at the beginning of our journey: "better to start planning for our children's future while they're still with us, than have someone make those decisions for you when you're gone." I don't trust anyone to decide what is right for my special needs child - only I understand his needs well enough. Well done on taking control of Nick's future happiness!

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    1. Stacey, your future is the same as mine. We have to think about where our kids are going to live when we are not here. It really does suck that this is the case. Our future might also involve a group of us organising our own thing.... I think Lionheart and Nick will hit it off nicely! ;)

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  4. Best of luck, I hope it goes ok for you. If the wait list is that long you are definitely making the right decision. I have been putting off meeting/ talking to financial advisor's for ages in regards to discussing special needs provisions, this has spurred me on to get organised. Thanks! : )
    Kats x

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    1. Hi Kats, yes it is so important to look at the financial side. I know that where you are, you get benefits, although I realise they have been cut back. We set up a trust years ago... although to be honest it doesn't look that healthy!!! Will email soon. x
      P.S. Really enjoying the book!

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  5. Wow..If it helps-I know how you feel..what you're thinking..it's kind of a hollow shock I think. We too have been sort of looking..and not looking (if that makes sense) You aren't alone (again don't know if that helps..Oh..life is just sometimes difficult. I'm sending you the best possible thoughts...

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