Monday, July 23, 2012

It Starts By Facing Your Fears

I know first hand the terrifying feeling of asking yourself what if? What if something happened to me? What if I got ill? What if I get in a car accident and I'm debilitated? What would happen to my child? Who would care for him or her? You know those questions that haunt you at 3:00 in the morning. The ones that you don't allow others to ask you. The questions that if someone actually gets the nerve to ask that you answer by saying something like, "I just won't get ill ever." Or even more illogical: "Well, I'm never growing old?". Ok, maybe you won't ever grow old, but that means you'll be dead, which isn't so great either in terms of providing for your child. Well, that's what a lot of us go through. Actually, that's at least a step in the right direction. At least we are admitting that our child needs ongoing life care for their entire life. There are still a lot of folks out there with involved adolescent or young adult children who are still hopeful that somehow some way their child will be totally independent-like in terms of getting married and going to college and being on their own. Seriously. I know these people. Sometimes, most of the time actually, I'm polite and reserved. But there is the inner me thats dying to be the Dr.Laura of the autism world and tell them to snap out it and wake up from the daydream they are having and face the music. I'm kind of starting to do it with posts like this, aren't I? Maybe what we can all start doing right away is just one little thing to be on the safe side. Face your fear. Accept the fact that there is a good likelihood that your special needs child will need some type of support service for a long time-possibly the rest of their life. And then be proactive. How can you do that, you ask? I recommend that you start by writing down everything that's involved in your child's life. Everything that you can think of and organize it in a way that someone else could follow it if they needed to. I've done that, and I organized it into sections of a book I call Blake's Lifecare book. If you want the blank sheets that you can use to put in your own child's information, I'll send them to you. Just email me your email address or leave it on the blog. Let's get started.

23 comments:

Unknown said...

This is such a fabulous post I have to leave words of encouragement! Most likely I will outlive my son because he has other medical issues - BUT the medical advancements they are making are awesome and amazing...so...I LOVE THE IDEA of Blake's Lifecare book. I would LOVE to see what you're doing with this!! Please share!!!

Anonymous said...

Great article, would love to start a book like this for my son. Could not find an email address to send mine to. thanks for blogging.

Sridhar said...

Thanks for articulating this so well. Infact this has been my concern since my daughter with autism was diagnosed at age 30 months.
If possible to email me the life care book.
I am also thinking of helping start private residential facilities in India with good governance for adults with Autis,. If you ahve thoughts with respect to this I'd love to hear from you

Regards
Sridhar

Cindy said...

I would love to start a book like this for my son, too. Would you post the email address I should send mine to?

Anonymous said...

Would love to get this started for our son, too!

Snaccers said...

Thanks so much Sydney. If anyone wants the templates I created for the book, email me at valerie@ snaccers.com

Snaccers said...

Sorry. Request it at valerie@snaccers.com

Snaccers said...

Will send. What is your email address?

Snaccers said...

Send to valerie@snaccers.com

Snaccers said...

Send your request to valerie@ snaccers.com

Sridhar said...

Many thanks .. it is smudhan19@gmail.com, thanks

Snaccers said...

they are on their way :)

Kirkland's said...

abbeymanor@gmail.com
is raising three autism children
please send me the temp plates etc... to leave it ffor them

Jennifern solo parenting 3, aka flying by the seat of thyne arse

Of This and That said...

Thank you for getting me started on looking ahead constructively. I would appreciate a copy of the template.

Anonymous said...

hi
a great article.
i would like to start my own life record book for my son. could you please send me the template to this id
kiruthikasrinivasan@yahoo.com

Unknown said...

Please send a template so I could start working for my son who's 16. Email address: joannapau@yahoo.com Thanks.

Snaccers said...

On its way :)

Snaccers said...

Absolutely!!

Snaccers said...

Will do. Need your email address. Send to valerie@snaccers.com

Snaccers said...

Will do

rupa said...

Hi,

I just stumbled on your blog today..could not stop reading all of them.we are so stressed presently fighting for a good IEP..we have. Ery little time to think for future.but this can be done if we all parents unite..atleast locally.most of the parent support group support the newly diagnosed kids and their parents.but what about us with kids who are not lucky to be recovered?they are getting bigger and no one is talking about this or any information is given.

Pls send me a copy of life care book too.my son do not need any strict routines...just a few like bath after getting up.but you never know our kiddos.my email is rupsub2000@yahoo.com

AS said...

Would you love your template for the lifebook. Keep writing your blog. It helps. Contact me at corngie at gmail dot com (tricking the spammers listing my address this way).

Unknown said...

Would love your template for the lifebook! blessedassurance5@att.net
And I am glad that I found your blog!