This year my daughter and I celebrate our 11th Christmas together. We try to keep to a 3-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). Since that isn’t possible, here are 12 things I wish for her or I could give to her:
One area people with FASD struggle with are social skills. Not only because of the difference between chronological and developmental age (in many situations my 18-year-old daughter acts like a 10-year-old child), but also the nuances of understanding body language and literal language. This affects her ability to keep friends.
She has no problem finding friends, she is very sociable and outgoing. The issue is keeping them. 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.
FASD is a physical disability; however, the part of the body affected, the brain, is invisible to our eyes. Very few people with FASD have any visible characteristics. When people can’t see a disability, people are 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 is impulsive, a black & white thinker, disorganized, does not connect actions with consequences and has trouble remembering things, even if she has done it a hundred times.
She can’t control these things. Her brain is damaged. I wish more people recognized that not all disabilities are visible.
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, had a job, was 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 that every other person on this earth can do the same things when they are 18.
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 that an Educational Assistant (EA) or Child and Youth Worker (CYW) or an accommodated lesson plan.
Another factor to improve outcomes 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 was accommodated and assigned an EA or CYW to help her navigate school life.
It is too late for my daughter, but I wish FASD is recognized soon so others have a better school experience.
My daughter said she wants to live with me forever. When she was young, I told her she could live with me for 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.
In Ontario (Canada) a recent report discovered over 14,000 adults with a development 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, 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.
Throughout the last ten years we have accessed a variety of professionals to address various behaviour issues. We were lucky as most had some understanding of FASD – but there were others who attempted to help my daughter or provide advice or suggestions, based on what works with neuro-typical children, with disastrous results.
A study revealed over 400 conditions are attributable to FASD. Many children are misdiagnosed because doctors and practitioners do not receive the education required to diagnose the underlying condition – which results in many children developing secondary disabilities. And if mental health professionals are not aware, that treatment plan will not fit.
I wish all health care practitioners were skilled in FASD diagnosis and intervention.
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 that was fine; her health care practitioner may still believe drinking alcohol is not harmful; or a woman may have an addiction issue and is not receiving support.
Many women will not admit drinking alcohol to their health care practitioner. If 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 women and start supporting women.
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 what will happen if you abstain from drinking alcohol while you are trying to get pregnant, or during your pregnancy, is that absolutely no child will be born with FASD.
My wish is one day FASD will be eradicated.
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 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.
If my daughter had a time machine, she may choose to go back in time and be born without FASD. But if she chose that I would never have become her mum.
My wish is that she could go back in time, receive a diagnosis earlier and therefore receive supports and interventions to lessen the struggles we have faced.
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.
So, please, if you celebrate Christmas or New Years and are planning on becoming pregnant, or are already pregnant, please do not drink alcohol during this season or your pregnancy. Fetal Alcohol Spectrum Disorder is the leading cause of developmental disabilities. It is preventable: 049.