What Does The Future Hold?

Last week it was my husband’s 60th birthday. There were  balloons, there was cake and trifle; champagne corks popped, the family gathered and celebrated.

As we get older, what does the future hold for our children?

As we get older, what does the future hold for our children?

However, this week I can’t help contemplating the future: for us and for our children. The numbers don’t lie. My husband is 60, albeit a young-at-heart, doesn’t look sixty, 60. His father died at the age of 77 and I know this weighs on my husband’s mind. How many years does he have left? 17? The truth is, none of us know.

With that in mind I wonder how many of you have made a will? You might not have a fortune to leave to your loved ones but if you have a child with special needs you  most certainly have an opinion on who you would want to bring up your child, how and where you want your child to be educated, what kind of future you envision for your child. I know I do.

You can make provision for your child by including a Letter of Wishes with your will. In this you can let those left behind know what your plans are for your child. When Harry was younger my Letter of Wishes included who I wanted to act as guardian, that I wanted him to stay at his special needs school until he was 16 and where I would like him to go for further education. I did the same for my daughter with the proviso that her wishes must also be taken into consideration.

If you wanted to go further you could let your executors know where your research is kept, include prospectuses, etc. Consider what guidance others would need in your absence. I try to keep my husband informed about all the little discoveries I make which could have an effect on Harry’s future.  But if I wasn’t here would he be able to remember everything I’d told him. Of course not.

In the course of completing the Learning Disability Assessment I finally got round to filing all the current paperwork relating to Harry’s education and welfare. It occurred to me that this equates to his EHC plan and would be the first port of call should anything happen to me. A big black ring binder contains:

  • Last 12-months e-mail correspondence pertaining to Harry
  • Draft LDA (completed LDA to be added in due course)
  • Most recent Statement of SEN and Annual Review
  • Most recent reports from all agencies involved with Harry
  • His social services needs assessment
  • His home-to-school transport arrangements
  • Financial statements, DLA award details, Carer’s Allowance correspondence
  • Ofsted report, prospectus and correspondence from Harry’s (hopefully) post-19 college

To this I am considering adding things like:

  • A list of names and addresses of all those people/agencies who have dealing with Harry
  • Details of the blog and Twitter account
  • A list of organisations which I feel may be useful for Harry in the future: independent living, housing, etc.

We don’t know what the future holds but there are lots of things we can do to help shape the future for our children.

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2 responses to “What Does The Future Hold?

  1. Great idea.

    I keep a list of names of the specialists who see Daniel plus any contact information in a notebook. All of his medical reports are stored in a folder in my bedroom (we live in a apartment).

    I also ask for any email addresses or phone numbers at the first appointment with a new therapist or doctor for the little guy so that I can contact the doctor if I need to. Same applies for his therapists. That way it makes things easier for everyone. I’m new to this my two children were born late 2016 (the little guy was diagnosed with Spina Bifida and clubbed feet before birth). I also maintain a list of medicines that he takes for his babysitter to read.

    I’ve also scanned his medical paperwork for any errors and omissions and contacted them asking for clarifications in the past.

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