Their Story: A Biological Mother of an Amazing Daughter with FASD

by Melissa Jan, Collaborator 
I was 12 when I had my first seizure. I had so many that my parents stopped counting. The doctors diagnosed me with Epilepsy. Just a typical 12 year old having to take medication to control them and hoping and praying that I’d never have a seizure in front of my friends was one of the hardest things I went through in my teenage years. Then something even worse happened. I was told by my doctors that my chances of being able to have a baby of my own were less than 1%. My world as I saw it in the future, ended. No, it wasn’t my life goal to just be a mom to my own blood, but knowing now that it wasn’t going to happen, I was crushed.  I didn’t tell anyone, no friends, no boyfriend, not even my family. I blamed myself, if only my brain worked properly if only I didn’t have to take medication that I was told was decreasing my chances of reproducing one day. If only…
 
Fast forward to me at 24 years old. I’m engaged, finishing the final touches on my wedding in just 3 weeks, I have a beautiful step-daughter, I’m happy.  I had accepted my faith with where I was going in my maternal life and I was content.  Being a step-mom was so rewarding in itself. Things were going just as planned, so I thought. At work one day a co-worker had this ‘feeling’ that I was pregnant. Of course, I just laughed at her and told her about my chances and how it wasn’t in the cards for me. She insisted, over and over. I was pretty sick, no voice and sore throat so I headed to the walk-in near work.  Got my antibiotics for strep throat and said to the doctor, “Ok, my co-worker is insistent that I’m pregnant, am I able to take a test to put her and now my mind at ease? How much are they?” He chuckled and said they are free, but me not ever needing to know this had no clue.  I did the whole, pee in cup and wait in the office. He came back in and said, you guessed it….The test is positive, you’re pregnant!  Shock overtook my body, tears flowed and I asked for a re-test. Three tests later, I was still pregnant. I WAS PREGNANT!!!
 
All the thoughts ran through my head. This was impossible. This wasn’t happening. I’m getting married in 3 weeks. Will I fit my wedding dress? Is this why I’m so sick? What will my fiancé say? Am I even ready to be a mom? Then this came out to the doctor, “Holy shit, I just drank a lot of alcohol at my stag last week”.  His reply, which at the time 13 years ago was fairly common, “It’s ok, I get woman tell me this all the time, your baby will be completely fine”.  Just like that I was reassured by a professional that the little human growing in me was going to be ok, healthy and a freaking miracle (in my case).
 
After reading all the pregnancy books I was determined to have the healthiest pregnancy and cherish this little one. I did all the right things, ate all the right food, kept myself healthy and active and took all the right courses.  My labour was long, painful and slightly traumatic, but then a baby girl (gender surprised) was born October 29th, 2006 at 12:03pm weighing an even 8 pounds.  She was beautiful, she was perfect and I was still in shock she was here. Blessed is all I felt. Her dad and were married, we had a little girl together and my step-daughter was ecstatic for a sister.  
 
My daughter whom I am going to refer to as “Sweets” was in this world, she was my daughter, my flesh and blood and I was happier than I could have ever thought possible.
 
She was a typical baby-toddler, cried all night long, struggled sleeping sometimes, couldn’t have dairy, loved to snuggle, playful, girly, loved dress up, loved playing outside, played with all our pets with so much love, and chatted a lot in her own little language (she gets that from her chatty mama).  It did make me wonder sometimes when others would say, “Sorry I have no idea what she said” and she was 3-4 years old but I completely understood her.  She pointed a lot to things she wanted and when she wasn’t understood or couldn’t get out what she wanted to say she would have quite large meltdowns. Nothing like I’d ever seen in my nieces, as they were the only other kids I had to compare to. She would kick walls, kick and punch me. I had bruises on my legs and arms constantly. I cried often as I didn’t know what to do to help her.  I just thought my daughter was in her “terrible twos”, then her ”threenager” and then, I guess ”fournager” stages, I had no idea what was in store. 
 
Her reality was that she couldn’t communicate her wants or needs to me the way other kids could. I would get frustrated, and so would she. I would get annoyed, and so would she. I would get down on myself as a mother (and still do), but her beautiful heart never would. She knew I was there, even if she couldn’t articulate what she wanted from me. She knew I loved her, that I was trying my best. My support was minimal and at no fault to anyone, but we just didn’t know. Didn’t know it took me saying 3 words per sentence instead of 15 words for her to understand me. Didn’t know that a tight hug would regulate her emotions, which would bring down her anger. Didn’t know that wearing noise-cancelling headphones would help her in loud places, where she would scream and cry and there was no rocking in a stroller that helped her. Didn’t know that strict routine was what she needed to help her know what was happening next. Transitions were hard. I didn’t even know what transitions were. Didn’t know that being her external brain was what she needed, all day, everyday.
 
How did I find this all out?  Well, as soon as you put a child into a social setting and see the way your child behaves is completely opposite to the way all the other kids behave, someone is bound to tell you.  Just that happened, teacher after teacher brought it to me and her dad’s attention, but I personally didn’t want to hear it. They were wrong, my daughter, my miracle baby I was never supposed to have, she was just having a rough go in school and she’ll be ok, give her some time.  Time went by, she struggled, life struggles happened and I struggled.  She finally went on a paediatrician waitlist to basically shut up all the teachers that were telling me how ‘different’ she was compared to others in class.  At least those are the words I heard.  After seeing a few paediatricians, I finally came across Jasmine Cohen.  She met with us, met Sweets and after many appointments she sent us to Child Youth and Mental Health who then sent us back to her.  We now had 2 professionals suggesting further assessments.  This scared me to the core.  
 
Then there we were, after waiting over 18 months to get an appointment with Sunny Hill in Vancouver, BC. Sweets ,10 years old, my new spouse and biggest supporter, me pregnant with my fourth baby (yup you read that right FOURTH baby…just gonna say it. The doctors were all wrong, I’m a baby making machine), sitting in the office for her first of many assessment appointments all quite anxious of what was to come.  I was asked so many questions that I think my head was spinning after that appointment.  Four months later I got a phone call from the main doctor at Sunny Hill asking to have just myself and my current spouse at the last family appointment where we get her official diagnosis. This meant that her dad must be excluded and that made me uncomfortable, confused and unable to wait two weeks for that appointment just wondering what it was about.  This very quickly became a special situation and I got her diagnosis over the phone that day. I couldn’t breath, I couldn’t talk, I fell to the floor, the doctor asked if I heard what she said and if I’d like to call back. I could barely make out a yes, but did.
 
FASD.  Fetal Alcohol Spectrum Disorder.  
 
Remember what that doctor told me 13 years ago?  He was wrong, oh so very wrong.  My baby would be completely fine, and she was. She just wouldn’t be the ‘fine’ that he meant.  I didn’t know what to think or do.  I just knew at that moment that this was all my fault.  If I didn’t have a stag, if I didn’t drink that alcohol, If I had known better.  There was always that apparent 1% chance but was that even real, I have four children. As I type this very paragraph I wonder about all the things I could have done to prevent this. Seen another doctor, gotten more tests done, talked to my family, gained the support before I became pregnant.  Doing all that won’t ever change her future, it won’t change what she’s been labeled.  Because that’s what it is, a label, a diagnosis, not who she is as a person. 
 
STOP! It took me until today to stop blaming myself for something completely unintentional and something uncontrollable.  I still have those moments though, where I beat myself up for what she was dealt with.  
 
I was the one during that family meeting with Sunny Hill that was to make the choice of her official diagnosis. There was an option of FASD or NDD (Neurological Development Disorder) which is abnormal brain development.  Making the official decision was very hard and took me weeks.  Lots of discussions with medical professionals as to what would best benefit Sweets in her future for support.  In the end, FASD was made.  She was also diagnosed with ADHD and MID (Mild Intellectual Disability).
 
Now today, after 2-3 years of gaining knowledge from doctors, specialist, taking course after course (I’m a complete textbook nerd) and finding the “right” support for her was what we all needed, especially her. I went to college to become an Educational Assistant to better understand her and support other children in their daily challenges. I cleaned up my nutrition, reduced alcohol (by choice) from my life which in turn has helped my body tremendously and then added fitness to my daily life to help make myself a stronger person for my entire family. Each day is getting better. We have less of these “hide her face” moments. She’s maturing and I see the changes daily. She may be chronologically 12 years old, but she’s developmentally 7-9 years old. When we go shopping and she’s suddenly mentally 8yo Sweets and people are staring, it’s ok. When she does something exciting and her excitement is that of a 10yo, it’s ok. All of this is, OK!
 
Just 2.5 years ago I said this very statement: “There will be a day that as her mother, not just her supporter/therapist/external brain, just her mother I will talk more about my beautiful girl and the many challenges she faces. What we do daily to advocate for her and create a life with purpose.”
 
I shared our story January 2019 and am now sharing it again with you!
 
For those who know Sweets, you all know that she’s an exceptionally brilliant, artistic and funny girl with a heart so big she will love you no matter what your differences are!
 
**Story told with consent from Sweets.
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