12 Wishes for FASD: A Year Later

As I was scrolling through the Our Sacred Breath Facebook feed, I came across an organization that reposted an article The Mighty published – which was based on a post from last year: 12 Wishes for My Daughter and FASD. In the four years I’ve been writing this blog, this has so far been the most visited and shared post. I decided I’d revisit the post to take a look a year later and see if any of the 12 wishes came true.

fasd-wishes-friend

Find a Friend

The boy I mentioned in the post is now a somewhat distant friend.  The end was helped by her moving to a different city to go to College. They keep in touch occasionally through FB (more him than her) but no longer see each other very often.

Another friend she had from high school (who lived next door to us for a few years) died quite unexpectedly and suddenly this summer.  Check out: Loneliness and loss: a lifetime of good-byes a post about her struggles with friendship.

She did make a few friends at the start of her College program, but those seemed to have faded like most of her friendships do. So finding a friend is still a wish.

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Recognition that Not All Disabilities Are Visible

Not much has changed here. However Holland Bloorview Kids Rehabilitation Hospital (Toronto, Ontario, Canada) launched a great five-year national awareness campaign in September, called Dear Everybody.

Although not specific to FASD, (or even Canada), the campaign is dedicated to breaking down disability stereotypes and challenges everybody to reexamine prejudices and assumptions.

Dear Everybody

You can check out Day 88 of 99 Days to FASDay: Dear Everybody to learn more.

One statistic revealed in the campaign echoes my first wish:  53% of kids who have disabilities have zero or only one close friend. Although it doesn’t ease her pain, it helps me help her understand she is not alone in her struggle.

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Understanding and Acceptance

Still work to be done here.

Although there was quite a bit of media surrounding FASD (some good, some not so good) the government of Ontario and our federal government in Canada announced investments for awareness and support – which will help with understanding and acceptance.

Ontario 2017 Budget Provides $26 Million for FASD 

One Response to Provincial FASD Strategy

Public Health Agency of Canada investing $3.6 M into 5 projects to address FASD

And in February, the maiden met the Prime Minister of Canada

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and was able to pass on a note to him about FASD.

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You can read about this exciting day here: A Letter for the Prime Minister of Canada

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Recognition of FASD in the School System

While it came too late for my daughter, there was exciting news in our province earlier this month with respect to recognition of FASD in our school system. Sophie Kiwala, a Member of Provincial Parliament brought forward a motion to amend our provincial education act to include FASD.

Bill 191: An Act to amend the Education Act in relation to Fetal Alcohol Spectrum Disorder (FASD). The Bill amends the Education Act to provide for board activities to promote awareness and understanding of Fetal Alcohol Spectrum Disorder (FASD), including best practices to support pupils who may have FASD and every Board shall facilitate collaboration with parents and FASD Support Groups. If it passes this Act comes into force on September 1, 2018.

It passed first reading. It needs to pass 3 readings before it becomes law, so there is still some lobbying and support the Ontario FASD community has to do in order to bring this bill into law, however, this is one wish that may come true.

fasd-wishes-confidence

Confidence in her Future

This related to her confidence in becoming independent from me. She started on this road – when she moved out (with her Grandma) to attend College. While she is still with a relative, she did take a step moving away from me, which I am sure is helping her confidence.

Another breakthrough was her agreeing that should she receive funding from Development Services Ontario for housing, she would be willing to look at moving into a semi-independent situation. While this could be years away, at least she is beginning to dream of independence. So this wish may come true.

fasd-wishes-access

Timely Access to Adult Services

This has not come true. The wait for adult services continues. See: Nowhere to Turn for Adults with Developmental Disabilities.

Although since writing the original post, we did meet with a representative of Development Services Ontario for the in-home assessment for adult services. And we did receive a registration package for a service provider. She is still on the wait list. So although we made progress – it was minor.

There has been a class action lawsuit filed against the Province for the long waits for services for adults – we registered to be part of the claim. See: $110 Million Class Action Lawsuit Filed in Ontario on behalf of People with Developmental Disabilities.

This wish remains unfilled.

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Professionals Skilled in Diagnosis and Interventions

Still waiting for this wish. We had some real distressing times with the maiden this Fall when she became overwhelmed after a difficult summer of change. Check out Hanging on to light and life.

One area that may provide some help (at least in Canada) is the new accessibility legislation. The goal is to promote equality of opportunity, and increase inclusion and participation of Canadians who have disabilities or functional limitations. CanFASD has proposed 10 areas for inclusion (which touch on many of the wishes I wrote about) and includes equitable access to FASD diagnostic services.

Check out: CanFASD Advocates for an Accessible Canada for individuals with FASD

12-fasd-wishes-stamp-out-stigma

Stamp Out Stigma, Blame and Shame

This wish was directed toward the stigma, blame and shame toward women and drinking. It will take a long time for this wish to be granted however I did discover a great resource called The Language Guide, which aims to change the words we use. It is a great resource and is a great addition to other programs aimed at stamping out stigma.

See: Day 21 of 99 Days to FASDay: FASD Language Guide to learn more.

12-fasd-wishes-eradication

FASD is Eradicated

Unfortunately this is one that may never come true – but if we all work toward awareness, understanding and support, we will change outcomes for mothers and fathers, people with FASD and for those who support people with FASD.

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I did undertake a 99 day awareness campaign, as part of the Red Shoes Rock campaign, and provided graphics and information on a variety of issues. Feel free to share this information. Check out 99 Days to 9/9 FASDay: Master Post which summarizes the campaign and provides links to each post.

fasd-wishes-love

Know Her Mum Loves Her

I think this is a wish that is granted. Even though she has her moments where she thinks I don’t love her (because she may have not made a wise choice and thinks I will no longer love her) we end every visit or phone conversation with “I love you” so she hears it. I also try to make sure I explain to her that love is also about setting boundaries and enforcing (appropriate) expectations.

Love is actions as well as words. We show each other in little ways. I am grateful. Check out a really early post which touched on this: I am grateful that I am still loved this way.

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A Time Machine

This is one wish still outstanding.

More wishful thinking than reality.

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All Items on her List

Funny enough, this Christmas was the first Christmas in 11 years she did not provide me with a list. I had to really think about a want, need and just for fun gift. Her wants this year were either an iTunes card or lottery ticket (I refuse to encourage gambling). Her need – she really didn’t have any needs that I could grant (see above wishes). One need we do have however now we live apart is to spend some quality time together. So on Christmas Eve day we went to see the new Star Wars movie. I am not a Star Wars fan, but it made her happy and I like to see her happy.

And the best gift she gave me?

A new pair of red shoes for 2018 Red Shoes Rock to Stop FASD.

Red Shoes for 2018

 

So, a year later, how many wishes came true?

Three wishes have come true: (5, 10, 12)

Four are in progress and may come true: (2, 3, 4, 8)

Three are a long way off: (1, 6, 7)

Two are unlikely but one can always still wish: (9, 11)

I am so grateful for those of you who take time to follow Our Sacred Breath. Thanks for spending some of your precious time with me this past year and I wish all the best for you in the coming new year!

 

 

 

 

 

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