My daughter and I celebrate our 11th Christmas together this year. We try to keep to a three-gift limit: something you need, something you want, and something just for fun. I would love to give her a new brain, because hers has been damaged by fetal alcohol spectrum disorder (FASD) – the result of her birth mom drinking alcohol during pregnancy. Since that isn’t possible, here are 12 things I wish for her, to make life for her, and others, better.
1. A long-term friend.
The maturity and development of individuals with FASD can be uneven. Although she is 18 years of age, some of her skill sets are those of an older person, and some are younger. Social skills are sometimes an issue because she does not understand nuances of spoken and body language.
She has no problem finding friends; she is very sociable and outgoing. The issue is keeping them, because social skills can be a challenge for her. She recently reconnected with a boy she went to elementary school with. He gave her a Christmas Card and called her his “best friend.”
I hope this gift of friendship continues.
2. Recognition that not all disabilities are visible.
FASD is a physical disability; however, the part of the body affected, the brain, is not visible. Most people with FASD have no visible or facial characteristics. When people can’t see a disability, they can be quick to judge.
Most people find my daughter friendly, polite, engaging, funny and helpful. When you spend more time with her you will notice certain quirks and challenges she has in navigating the everyday world. She can be impulsive, a black and white thinker, disorganized, struggles to connect actions with consequences and has trouble remembering things, even if she has done it a hundred times. She can’t control these things, because her brain was damaged before she was born.
I wish people recognized that not all disabilities are visible.
3. Understanding and acceptance.
One of the keys to helping someone with FASD is to meet them “where they are,” not where society thinks they should be.
I’ve had discussions with countless people who offer well-meaning but ill-informed advice, such as, “When I was 18, I was in college,” or “living on my own,” or “in the army,” etc.
I wish people understood and accepted her the way she is. Just because you were doing something at 18 doesn’t mean every other person on this earth can do the same things when they are 18.
4. A school system that recognizes FASD.
School is geared for the masses. If we want an inclusive society, and promote education as a right, then students should be taught in a way that supports and accommodates their development. FASD is not recognized in our school system as a condition that qualifies for support, be it an Educational Assistant (EA) or Child and Youth Worker (CYW) or placement in a program geared to their abilities.
A factor to improve outcomes for people with FASD is having an “external brain” – someone to provide guidance and support. Many of the incidents and struggles my daughter experienced during school, which led to multiple school disruptions, could have been avoided if she would have been better accommodated and assigned an EA or CYW to help her navigate school life.
I hope FASD is recognized soon so others have a better school experience than my daughter has.
5. Confidence in her future.
My daughter has said she wants to live with me forever. When she was young, I told her she could live with me as long as she needed to. She tells me she is terrified of living without me – that she does not know how she will manage. While she may not be ready to leave the house at 18, my wish is one day, with the right supports, she will have the confidence to live a life apart from me.
6. Timely access to developmental services in the adult system.
In Ontario (Canada) a recent report revealed over 14,000 adults with a developmental disability are on wait lists for services such as: respite, housing, job support or day programs. The wait for these services is a minimum of three years.
She can’t live on her own, and no one is paying me to be her caregiver (and she cannot stay alone all day). Even though she qualifies for support, she cannot participate in any of the day or employment programs, so she must stay in school until she is 21. What happens if she turns 21, must leave the school system, and she is still on a waiting list?
My wish is all adults with a developmental disability receive the services they need when they turn 18, without delay.
7. Professionals skilled in diagnosis, interventions and support.
Throughout the last ten years we have accessed a variety of professionals to address various behavior issues. We have been lucky because most have had some understanding of FASD – but there are others who have attempted to help my daughter or provide advice or suggestions based on what works with neurotypical children, with disastrous results.
A recent study revealed over 400 conditions attributable to FASD. Most children are misdiagnosed because doctors and practitioners are not receiving the education they need to diagnose the underlying condition – which results in many children developing secondary disabilities. And if mental health professionals are not aware, the treatment plan prescribed will not work.
I wish all health care practitioners were skilled in FASD diagnosis and intervention. And if not skilled, were aware of it and provided a referral.
8. Stigma, shame and blame are stamped out.
There are many reasons why a woman may have drunk alcohol while pregnant: she may have had a drink before discovering her pregnancy; someone she knew drank and had a baby without any condition; her health care practitioner may still believe drinking alcohol is not harmful; or she may have an untreated addiction issue and was not receiving support.
Many women will not admit drinking alcohol to their health care practitioner. When women feel safe to disclose alcohol consumption during pregnancy, the outcomes for themselves and their children are much improved with earlier intervention and support.
I wish people would stop blaming and start supporting women.
9. End FASD.
The message is clear and simple: 049 = No (0) alcohol for (4) nine (9) months of pregnancy. The only cause for FASD is the consumption of alcohol during pregnancy.
Not every child will be affected, nor will every child be affected in the same way. But if women abstain from drinking alcohol while trying to get pregnant, or during their pregnancy, is no child will be born with FASD.
My wish is one day no child will be born with FASD.
10. To know she has a Mum who always loves her.
During the adoption process, no one educated me about FASD. No plan was established should I require access to services. We have been though some really trying times. Many people ask me, given what I know, would I still adopt my daughter? Of course, I would.
I am a better person in many ways for having her in my life. What I would change, however, is how I react sometimes when my frustration gets the better of me. I hope she knows, even in those moments, I love her and always will.
11. A time machine.
If my daughter had a time machine, she might choose to go back in time and be born without FASD. But if she chose that, I might never have become her mum.
My wish is that she could go back in time and choose to be diagnosed earlier and therefore receive supports and interventions to lessen the struggles we have faced.
12. All the items on her gift list.
Even though all the above would make her life so much better, they can’t be wrapped.
She hasn’t asked for much: I hope to make her Christmas wishes come true. A purse, dress, gloves and hat are her needs. A stereo and headphones are her wants. And just for fun, I’ll probably give her Pokémon cards (her obsession.)
While it looks like I will go over the three gift limit this year, I do hope at least three of my other wishes come true for my daughter, and others, in 2017.
And if you celebrate Christmas or New Year’s and are planning on becoming pregnant, or are already pregnant, please do not drink alcohol during this season, or during your pregnancy. FASD is the leading preventable cause of developmental disabilities. Just remember: 049.
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