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12 Christmas Wishes for My Daughter With Fetal Alcohol Spectrum Disorder

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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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My Son Has Fetal Alcohol Syndrome

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Tomorrow my son will be 13.  You may not be able to appreciate this milestone, but for us (and him) it’s a huge one.

He has come so far.

My son has Fetal Alcohol Syndrome (FAS). He was born five weeks premature weighing in at 5 pounds. We finalized his adoption when he was 2 years old, but he has been with us since birth. During his first 12 years of life he has struggled both medically and emotionally. Along with FAS his medical conditions include ADHD, epilepsy, mood disorder, small stature and is academically challenged. 

Our family has had many ups and downs over the years as we learn more about FAS. We have seen firsthand the side effects. These include physical and neurological effects on the body. Often I am overcome with emotions. Anger over the circumstances he was given. Sadness knowing he wants so desperately to feel “normal” and fit in. Frustration because others judge and do not understand him when he is acting impulsively. I want to shout out to the world that he is not a bad child. He is actually a success story. He is surviving. 

Even as parents, we often lose sight of our children’s successes when times are tough. We tend to focus on the negative, and we forget how to celebrate each of their successes. We sometimes allow how others react to our children to beat us down emotionally. We want to educate everyone we meet about our children so judgment will not be passed on their behaviors. Is it our job to “warn” everyone we meet about our children and how they may act at times? Nope. But we want to. Because we want our children to be accepted, loved and seen through our eyes. 

My son has been given challenges most parents would not purposely impose on their children. Despite all of these challenges, he fights. He is a fighter. He is my fighter. He fought in the hospital to thrive as a preemie. He fights in school to stay on grade level. He fights to be accepted by his peers and to fit in. He fights to control his impulsive behaviors. He fights to be understood. He wants to be seen as a good boy. And he is!

I celebrate his victories.

I ask that each of you celebrate the little victories in your own children. Don’t let others beat you down. If you see a family struggling in public with their child – celebrate them! Celebrate that they made it to the store and they are doing their very best. Don’t assume a challenging child is bad or misbehaving. They have a story, too. Educate your children on acceptance and how to make every child feel included. 

Most important, I want to tell my 13-year-old son – thank you.  Thank you for showing me what a true fighter looks like and teaching me to love unconditionally.  I heart you!

This post originally appeared on Her View From Home.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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What I Want You to Know About My Son’s Fetal Alcohol Spectrum Disorder

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Our 13-year-old son was adopted at the age of 4 weeks old. We knew he had been exposed to alcohol throughout the entire pregnancy, but we were optimistically hopeful that he would escape the effects of alcohol. He was diagnosed with static encephalopathy alcohol exposed (which falls under the fetal alcohol spectrum disorder umbrella) at age 2 and a half. This is our story.

Fetal alcohol spectrum disorder (FASD) can manifest itself in a variety of ways, person to person. At its core, it is permanent brain damage caused by prenatal alcohol exposure. Here are just some examples of what we deal with on a daily basis.

Imagine:

Telling your child he can’t have a granola bar. This sets off a four-hour rage that ends only when he throws a rock hard enough at the van to shatter the back windshield. The child doesn’t understand why you’re upset. It’s not his fault. He didn’t mean to break the window. It just meant to throw rocks at it. The child never “owns up” to breaking the window because he truly sees it as an accident. He cannot see that he caused the broken window.

Imagine:

Telling your child to clear the table, his one and only household chore. He might do it. Or he might knock down chairs, throw any small item within reach and go to his room and scream for an hour.

Imagine:

Early in 2015, my son with FASD had an appointment at the children’s hospital. They asked his birthday. After thinking for a moment, he finally came up with September 3. When asked the year, he couldn’t answer. I told him he was born in 2002. Now more than six months later, if asked when his birthday is, he answers “2002.” Because that was the “right” answer once, he is convinced 2002 is the answer. Why has this one answer stuck when it takes him so long to lean other things? Who knows? I’m sure eventually it will fade, but right now, it’s stuck in his brain.

Imagine:

A 13-year-old who still mixes up the words bagel and doughnut, ketchup and syrup, watermelon and pineapple. See the pattern? Similar items…but the wrong word. These are just a few examples.

Imagine:

You see your child about to brush his teeth with a tube of yeast infection cream. You take it away and your child gets angry and yells, “Then what am I going to use to brush my teeth?” He remains mad at you for the rest of the evening for taking away his “toothpaste.” He can’t see you were protecting him from using yeast infection cream. He only sees you asked him to do something (brush his teeth) then got in his way when tried to do it.

Imagine:

Your son looks perfectly “normal.” One good days, there are giggles and laughs. He does his homework. He joins the family for dinner. He goes to school. His teachers expect him to do his work and to participate in class. And on a good day, he does.

Imagine:

A 13-year-old son who still loves to cuddle. Who is very affectionate and well attached. Who can out-Lego and out-puzzle my kids with no special needs. Who is an artist. Who is great with animals and babies and toddlers. Who is creative.

Imagine:

More “bad” days than good ones.

I don’t share these stories to demean my son. He is fiercely loved and we offer him all the support we can. I spend many hours every week advocating for him in the form of phone calls and mountains of paperwork. I share this so you can get a glimpse of the realities many parents of alcohol-affected kids are living with.

The world doesn’t understand fetal alcohol spectrum disorder. The behaviors my son exhibits are not rebellion. They aren’t something more love, or more discipline, or more rules or fewer rules are going to solve. His brain was permanently affected by the alcohol his birth mother consumed during her pregnancy. Nothing can change that. He can know something one day and forget it the next. It is called being on the fetal alcohol spectrum.

My son is handsome and strong.

My son is the face of fetal alcohol spectrum disorder.

Author's children smiling outside

Follow this journey on Little Earthling Blog.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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When My Son Asked Me Why He Has Brain Damage

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If you watched my son on the playground, you’d see an average-sized 9-year-old with beautiful brown skin and a big smile. His mannerisms are a little off and his language a little strange, but for the most part, his disability is invisible.

Mateo has Fetal Alcohol syndrome. My husband and I were young and clueless when we adopted him — out to save the world with love and a Disney-themed toddler bedroom. Now, we know love doesn’t fix everything.

This has never been as clear as the day he stood, sobbing, in my kitchen seven years later, asking if he has brain damage. It’s a yucky term, but we use it so professionals understand his difficulties with following rules aren’t because he’s a “bad kid.” But it’s not a term I want my son, who’s functioning like a 4-year-old, to associate himself with.

It always happens that kids throw these parenting bombs at us when we least expect it. So there I was, mouth hanging open, food burning on the stove top, fumbling for the right words. How do you tell an 8-year-old his brain will never work like his younger sister’s? How do you tell him he’ll always be slower, less coordinated than his peers, and he’ll probably need therapy and medication his whole life?

“Why did my brain get damaged, Mom?” he asked through tears. “Why am I the only one in my class who’s stupid?”

He looked at me, pleading for answers that made sense, desperate for his mommy to fix things, to tell him it’ll be OK, to heal his boo-boos with a kiss. But there are some boo-boos I can’t fix.

I’d like to think I said all the right words that night, and that any number of professionals would give me a round of applause for it, but I don’t know if that’s true. I’m not a believer in sugarcoating things for my kids.

“Can we fix it?” he asked. “Can I get a new brain?”

Trying to hold back my own tears, I hugged him and said, “All we can do is try our best and keep going.”

That’s as close to a motto as we get as parents on this wild, uncharted journey. We don’t know what the future holds or how much he can learn and grow and develop. But we’ll always try our best, and we’ll keep going, one day at a time.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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Why I'm Almost Proud to Tell the Story of My Child Kicking Her Classmate

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My daughter, Sydney, got in the van as she does every day after school, but this day was different.

She didn’t start talking a mile a minute, asking me where I’d been and what I’d done. She didn’t loudly share with me who she played with at recess or how awful the boys in her classroom behave. She didn’t ask me what I was making for supper or complain about the school lunch. She didn’t drop her backpack on the floor and flop down into her booster seat in the back. She didn’t wrestle with the seatbelt and complain about how hard it was to get fastened. She didn’t ask me if I’d brought her a snack and whine about how hungry she was.

Syd on fence

She instead eased her backpack off her back, sat it down gently and came to the center of the van to stand beside my right shoulder. She wouldn’t look at my face. She began to talk softly in partial thoughts and broken sentences. I could tell she had something to tell me that was overwhelming, something so dreadful she couldn’t bring herself to use the words. I turned around to face her and said, “I cannot understand what is wrong until you tell me. So far, I know that someone is going to email me, but that’s all I’ve got. It would be better if you can tell me yourself before I get the email.”

She began to cry huge tears that ran right down her cheeks and dropped to the floor. I pulled her close and told her that it would be OK. Whatever she’d done could be fixed. She choked out the name of a student in her class and said they’d argued. Sydney had kicked her friend — hard.

I looked down at her feet. She had on cowboy boots. I asked all the questions you would expect. “Is she OK? Did you apologize? Did you have to see the principal? What is your punishment?” All Sydney could manage was, “I’m sorry. I’m sorry. I’ll never do it again. I am sorry.” I turned off the car. We would be late to pick up her brother, but sometimes the world has to stop spinning for a minute so a little girl’s hurt can be cared for. As Sydney calmed and we talked, I realized she saw this as a two-fold problem. She was genuinely upset that she had been naughty, but also she knew she wouldn’t be able to relax until it was resolved. I’ve seen kids cry many times in the last 26 years of parenting. I know the difference between the tears of a child who’s truly remorseful and a child who’s only sorry they got caught in mischief.

Sydney and I walked back into the school building, her squeezing my right arm as tightly as she could. The hallway seemed so much longer than it usually does as we walked to her classroom. She sniffed and wiped at her face the whole way. We found Sydney’s teacher in the classroom. She’s a compassionate, kind, reasonable woman and easy to talk with. We three were able to put our heads together and decide that it would be appropriate for Sydney to write an apology letter to her classmate. As we left I could see the relief on my little girl’s face. Everything was going to be OK. When we got home she sat and wrote that letter in her best handwriting and asked for me to check it. She didn’t argue or leave it laying on the counter for me to put in her backpack.

Sydney came to me often throughout the evening to tell me how sorry she was for kicking her friend. Each time, I told her everyone makes mistakes and she had done the right thing by apologizing. At one point Sydney told her older sister what she’d done and sobbed again.

You may be wondering why I find this event in the life of my child so significant. Why is this noteworthy at all? Don’t children sometimes fight? Don’t children sometimes make poor choices? Don’t children sometimes become emotional? Children do all of these things — typically developing children as well as children with disabilities.

Sydney in pink hat The thing is… Sydney is supposed to be kicking her classmates daily, but she doesn’t. Sydney is not supposed to be able to show regret or remorse. But she can.

Some of the books I’ve read say children with Fetal Alcohol Syndrome (FAS) sit in the principal’s office more than they sit in the classroom. Some of the parents in support groups say their kids with FAS kick, hit, spit, bite, scream, throw things and hurt others daily without regret. Some of the parents who blog about their children with FAS tell of dangerous, violent behaviors. As hard as Sydney is to deal with each morning before her ADHD medications kick in and as difficult as she is to teach, she’s seldom malicious. She’s bossy and a little moody, as are most fourth grade girls. She’s silly and giggly and wiggly and loud often, but she’s sweet and loving. How did I get so lucky? How did I adopt a kid — whose brain was damaged by alcohol — who can still be gentle and kind the majority of the time? How did I get the kid  — whose brain was damaged by alcohol  — who can still feel remorse when she hurts someone? I’m blessed.

The incident qualified something for me yesterday. I often find myself advocating and arguing that Sydney shouldn’t be held to the same standard as her peers. As unfair as it is to hold Sydney accountable for many of her actions due to her brain damage and limited impulse control, it’s also unfair to give up on her ability to develop some of the characteristics that others tell me she’s not supposed to have. I see some great potential and it’s growing. I must maintain my caution so I don’t ask Sydney to do the impossible, all the while challenging her to be all she can be.

It would seem I’m almost proud when I’m telling the story of my child kicking another child. As sorry as I am that my child caused another child’s pain, I’m proud of my little girl for many other reasons. I’m delighted she has only lost the limited amount of self-control she was allotted and kicked a peer one time. I’m elated she was tenderhearted enough to care that she had done it. I’m pleased she took responsibility and was brave enough to face whatever consequences lay ahead. I’m proud she willingly wrote an apology. I’m grateful she loves me and trusted I would help her with her problem. I’m overjoyed that she is mine.

This post originally appeared on Quirks and Chaos.

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Why I Believe Only Special People Parent Special Needs Children

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Recently, a longtime friend reached out to me to let me know she was expecting a Sensory Processing Disorder diagnosis for her kiddo. She was feeling all of the things you feel when you are told your child is different, and she was wondering if I had any suggestions or helpful tips about how to begin their journey.

We chatted for a while, and it turned out she was already aware of several things that would be helpful for her child. (I wasn’t surprised; she’d always been a smart, tough go-getter.) So I put in my two cents, wished her luck and asked her to keep me posted.

The conversation stayed on my mind for the remainder of the day. I thought of the beginning of our journey. In my mind, I went over all the things we’d learned, doctors we’d seen, therapy we’d done, changes we’d made in our lives and lifestyles… and it was the first time I’d stepped away and looked at it from a distance, rather than just feeling it from the epicenter. It was the first time I’d realized just how far we have come.

I’m proud of us — not just of Lucy, who has done an enormous amount of work, but of our entire family. Each of us has had to sacrifice and grow and love each other better than we might have if we hadn’t been on this crazy ride together. It was one of those shifts in perspective that all of a sudden illuminates a reality you hadn’t considered before. It was a gift.

Then a few weeks ago I read an essay by the mother of a child with special needs. The essay described her irritation when people told her that, “God only gives special kids to special people.”  She knew those folks were saying it with only the best of intentions, but believes that kids with special needs can be born to anyone, and some of those people go on to do horrible things to their children. I enjoyed the essay and the ultimate message, but something bothered me about it, and I couldn’t put my finger on exactly what it was.  I thought it over for several days, and then I had another lightbulb moment.

Because I’d said something along the lines of, “God only gives special kids to special people” to my friend in our conversation when she’d reached out to me days before. Was I a jerk? I am the parent of a child with special needs; I should know these things. Am I bothering other parents when I say that? It’d never bothered me when someone said similar words — but why not?

I thought again of our beginning — when we were searching for answers to questions we didn’t even know how to ask, before we had our diagnoses and we knew things were off. I thought about after — getting our diagnoses and facing the reality that we had a lot of work ahead of us, with uncertain outcomes. So many questions. Not the least of which were the soul-wrenchers: “Why her?” “Why us?” I wanted to feel that there was some purpose to it all and that it wasn’t some random twist of fate — that maybe there was something special about me and her — and me and her together.

Now, I have to admit that while I consider myself a spiritual person, I will rarely, if ever, bring God into a conversation. I’m not one for the white beard and the throne and the meting out of judgment. And I run in a pretty secular crowd, so no one has ever said that exact thing to me before because that’s not the way we speak.  But I have said that it takes a special person to parent a special child. And I believe that. It gave me comfort when I was looking for answers years ago, and it gives me comfort now during the hard times.

I think communicating it that way conveys the good intention with better words. It’s just a little shift in what can be said, but it means something different. True, anyone can have a child with special needs but instead of “have,” which is passive, “parent” can be active. Not a noun, but a verb. A doing. And if someone does a horrible thing to a child, that is not “parenting.”  That is simply criminal.

Truly parenting a child with special needs absolutely requires a special person. Someone who has strength, patience, resilience, persistence and deep wells of love for the unique person whose care they’ve been given.

After talking to my friend, I realize that she’s exactly that kind of special. She’s an intelligent, fierce mama who will be the absolute best advocate for her child. After looking back at our long, long road, I realize I’m that kind of special, too. Our whole family is that kind of special, and there’s nothing passive about it. We choose it and act on it every day. It doesn’t mean we’re perfect or that we get it all right all the time, but it means we’re purposefully trying hard and doing well by our special needs kiddos. Thinking it over put me at peace with my words.

So if you’re like me, and you want to give some words of comfort, particularly to someone who is just starting on their journey, I think it’s OK to let them know you know it takes a special person to actively parent a special child, regardless of how that child came to them. God, genetics, adoption, whatever. Because it does take somebody special. I don’t think I’ll ever be convinced otherwise. And you know what? If you chose to read this today, I’m willing to bet you’re pretty special, too.

lucy and merry

This post originally appeared on Mom in Uncharted Waters.

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