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Welcome to the website of the National Organisation for Fetal Alcohol Spectrum Disorders (NOFASD) Australia.

PARENTING WITH FASD

“Being a parent is a daily attitude, NOT a biological relation.”

Angel Chernoff

“We are all imperfect parents, and that’s perfectly okay.  Tiny humans need connection, not perfection.”

L.R. Knost

I am not sure how many people at this point know, but in early 2020 I became a Mom through adoption.  The adoption was completed in September 2020. It began six years before the writing of this, when a very special and wonderful little boy walked through my door and into my heart. He came as a foster child in my family, arriving from a placement that could not handle him, with a handful of Lego, significant trauma, and “Potential FASD and Autism”, which was later assessed and confirmed.  Four years ago, from the date of this writing, when my son was seven, I was asked if I would consider adopting the child who is now my son.  Yes…me.  An adult with FASD.

Parenting!!! It is a huge decision for anyone to make, no matter how your child becomes your child.  For me It was actually a surprise that a social worker asked if I would consider adopting.    I was under the assumption that people with FASD could not adopt; would not even be considered as a potential adoptive parent; never be asked to adopt; never, ever, actually be chosen for a child.  I was also under the impression (self-impression?) that I could not parent!  I mean I was a good Auntie. Great even; but to parent?! Be a mum!!! NO WAY!

However, when I finally decided to say yes, I would be a Mom, there were so many things I knew I would need to contend with. Firstly, that false assumption I could never parent, simply and precisely BECAUSE I had FASD.   Not because I was no good at it. (I had been auntie and  mother figure to one of my nephews and a niece for years at this point)  but because everything everyone (except my Mother and several social workers) believed; everything I read, told me that.

During the adoption process I wrestled very hard with things that I didn’t even know were an issue but became very huge issues in my thinking and almost led me to miss out on one of the greatest, most challenging, wonderful parts of being alive!!! The one word “Parent”. I knew how much I loved this little boy, how much I understood him, how much he was so like me in different areas. I loved the sounds he made (well….most of them) I loved how he thought and interpreted the world. I understood why he did the things he did and the challenges he had.

The rub was, I didn’t think I was good enough for HIM; I was not the Mom he deserved! I wanted him to have the mythical two wonderful parents, a white picket fence and a dog situation. I thought there were greener pastures out there for him that did not include me.

So, I started with “not being good enough”.  Good enough for who? Him? Me?  I struggled with what I thought parents should be – patient, understanding, successful as the world defines success. I had this idea that a parent should have it together.  Whatever “it” was – as in everything, everywhere, all the time.

Since I struggled with the challenges that made every day on my own hard, how could I be a parent? Memory and energy, anxiety; all the typical problems with math and time management.   I already knew my little boy was a bundle of energy and questions (so many questions – to this day still so many questions!!).  I already knew his trauma made him very susceptible to triggers.  I already knew he needed me 24/7.  I already knew it meant  it would take years for him to overcome what he could overcome. 

The truth is I panicked on quite a few occasions during the adoption process. Some days I believed I could do it; I could be the Mom this boy needed and deserved. Other days I was so crippled with the weight of my own fears.

Fears permeated and showed just how much I listened to and had absorbed all the negatives about people with FASD and how much of what I had internalized about myself in this one area. And the fear of other people’s reactions. Fears that I couldn’t parent; remember what needed to be done.  Heck, I forget to change over the laundry (and I don’t mean just forgetting for an hour, I mean forgetting for days sometimes), I mix up my schedule at work still to this day and know I always will; I can forget to eat. How was I supposed to organize my life and the life of a child at the stages he needed?  All that I was paying attention to were the wrong things.

I named it “drinking the kool aid” Not the most positive analogy. But I did; I whole-heartedly believed I would fail. I would fail this boy if I became his mother. What I totally ignored, while I focused on all he things that are the least important, was that I knew how much I loved this little boy, how much I understood him, how much he was so much like me in different ways; I loved how he thought and interpreted the world. I understood why he did the things he did and the challenges he had – and most importantly, I knew how to help him make sense of his world. I forgot that in this case, my having FASD was a strength and not a weakness.  And the social worker knew that, even when I did not.

I often say that I don’t care what others think, which for the most part, is true. However, I do care very much about what people will do with what they think.  Why?  Because that is where the problem lies for parents with FASD.   There are people with FASD who are amazing parents who have been the target of misunderstanding, preconceived notions, prejudice and stereotypes and have either lost their children just based on disability or had it used against them in family in court by an ex-partner.  I am all too aware of what is said and thought. The lack of education and experience of those who, even well-meaning, can do great harm.

 I have an amazing support system. I have my own Mom, and my friends and my partner.   They take over doing the things I have trouble doing and leave all the real hard stuff to me.  I parent; they support.

In the quality-of-life survey by the ALC of FASD Changemakers that I was lead for, 2/3rds of parents who have FASD  have a family support system that allows them to be successful.  But it was also noteworthy that an additional 18% of parents have had FASD used against them, and it had worked 59% of the time.

While other parent without this diagnosis may have a fear of losing their children, those of us with FASD unfortunately know how all too real the possibility is for us.

Armed with that kind of knowledge, the prospect of messing up even in simple ways where all parents mess up , carries a far greater chance of harsher judgment if not outright punishment. For me a missed lunch could be misconstrued as neglect. Or if my child who has a very high pain tolerance (like me) breaks his arm, he doesn’t tell me it hurts and I take him to the hospital some period of time after it happened, where nobody knows me, and I tell them he has FASD, what then?   The very real chance is someone could think it is abuse. Then when they find out that I also have FASD and not just my child…. I know all too well how badly that can go.   And unless I were to tell them differently….they will assume I am his birth mother and therefore someone with an alcohol use problem, and the index of suspicion goes through the roof.  And I am NOT going to tell them I am his adoptive mother because that should NOT matter, and I refuse to blame any woman who gives birth to a child with FASD.  If I reject my child’s birth Mom in such a fashion….I am rejecting him. 

Shortly before completing the adoption of my son, I took him to an Optometrist to get his eyes checked. It was a normal thing for any parent to do. On the form I had to fill out under “any other medical conditions” I filled out that he had Autism and FASD”.   During the eye exam, the Optometrist was very short with me and my questions. While he was checking out my son’s eyes, he noticed something different. He then asked me if I had ever “Let XX play in kitty litter”.  I was a bit confused because I don’t think anyone “lets” their child play in kitty litter! I said no. He then asked me about the state of cleanliness in my house. What he was getting at was that he thought that my son had Toxoplasmosis at one point in his life. And referred me to an Ophthalmologist. I did not tell the Optometrist that I had adopted my son. Like I said earlier, it is NOT germane to the issue and It didn’t matter to me and I didn’t think it was any of his business. But what I did  not figure out until later was that he thought I drank with my son and therefore was deserving of his harsh judgment and rudeness.  As I have stated in other blogs, I had done the work to be okay with my own birth mom. What I didn’t expect and what I will not tolerate is the intolerance and ignorance of others  and downright rude behavior towards moms who  drank during pregnancy; women who they know nothing at all about.

When I went to the Ophthalmologist, I was at this point very anxious about how I would be treated and what kind of medical care my son would receive based on someone else’s judgment. (it seems no matter what, everyone feels they can judge others, and having FASD, or being a mom seems to come with more of that).

Thankfully the Ophthalmologist knew something about FASD.  He was kind and polite and actually baffled at the other guy’s so-called diagnosis. Because my son did NOT have toxoplasmosis at all, the anomaly wasn’t even in the correct spot for that to happen. What had happened and what the doctor explained to me, was that when the eye is developing, it develops in layers. And at some point, the eye didn’t develop a layer and a new layer was developed over a divit. It was caused by FASD.  That is what the anomaly was, and it didn’t even affect the eye’s usefulness.  The absolute difference in the way I was talked to and treated was night and day, I knew then that what the optometrist had said and the way he said it, was out of line. So, I went back and actually made a formal complaint against him for his comments and behavior.

I have, with great difficulty both during adoption home study and even today, dealt with those thoughts and pre conceived notions.

I had – and have – a lot going for me strength wise. The person who suggested I adopt my son was a social worker who knew me.  I also worked very closely with the adoption social worker.  I had and still do have a good head on my shoulders for important things and am very real and practical about both my strengths and limitations and have formed a very good support system that I use and never blame myself for needing and using them. 

 Thankfully I reach out to those supports if I need them (mostly my Mom whom I live with). My son and I are very similar because we can’t handle a lot of outside stimulation. We limit that to things like going to a park, or walking in the forest and going to the Library. We avoid – like the plague – things and places that are noisy and busy because he has to deal with school.  Many days are spent at home because we both get tired from social interactions. I have the support of my long-time best friend since elementary school who has two children of her own.   And she has my support. I also have to remember before the label of legal Mom or “parent” I was being just that to my niece and nephew who live with us.  When I officially adopted my son, the only thing that really changed was the title. I was always his Mom. And with the support I have, I will continue to be one for the rest of both our lives.

Recently I experienced a situation similar to my fear, but thankfully approached with understanding and double checking. I had had my son for four years and he was in grade four at this point. (his second year with the same teacher thankfully). Covid rules had been lifted and they brought back special  hot lunch days you pay for. But the problem was, I had to order them online. All the letters and notifications from the school come online. I don’t look online because there is too much email and I get overwhelmed.  And I never remember to. And both my son and I forget things. So, when hot lunch day rolled around, and he had a home packed lunch, the new-to-the-school support teacher would take my son to get a free hot lunch. She had asked on a couple of occasions, “why mummy doesn’t get him hot lunches?” His answer, was “Mommy uses all her money to gamble” Yikes!   Here comes the potential “what they DO with what they think” piece. 

What actually happened were two things. I was teaching my son about saving money, and the other thing is once a month I would take him to the gas station after school to get a Slurpee. I would then buy a $1.00 scratch and win lottery ticket. I might point out the ticket costs less than the Slurpee!  I had explained to him that choosing what to spend your money on was something we consider before buying anything.    But what I didn’t know was that the support teacher thought I was a chronic gambler (after all…. I used “all my money”) and gave him free lunches because she thought I couldn’t afford lunches. My son then casually mentioned to me that he gets hot lunches for free, and I then asked him why, and he told me “because you gamble”!  I asked if he had told that to the support teacher and he said yes.  Just imagine where this could have gone if something else had come up.   I went to the classroom teacher and explained what happened.  Thankfully she and I had a good laugh because she knew I did no such thing; she has known me for three years. And I made arrangements with the school to give them actual physical money for them to use when hot lunches happened because I would forget. And when the money ran out, they would tell me!  Reasonable accommodation.

The problem was the support teacher did not check with me (or anyone else) to find out if any of this was accurate! And just assumed because I was a parent with FASD (which they know) that I did indeed make those “poor” choices. Really????  If it wasn’t for the classroom teacher whom had known me for some time,  I think it could have gone a lot differently over time  because there will always be something I do differently than other parents; something that can or will make me look like I am neglectful.

Throughout life, I think both my son and I will always run into people who do not understand and who will make Judgments based on what they think they know of FASD and how I parent. I hope to change that perception and be the best I can for the most wonderful son in the entire world.  And yes, I am biased, and yes in this case it’s a good thing!

“Your children need you to love them for who they are, not spend all your time trying to fix them.” 

Angel Chernoff

CJ Lutke was diagnosed with FASD when she was a baby and now, as a member of the Adult Leadership Committee (ALC) of the FASD Changemakers in Canada, is a well-known speaker on FASD. She has presented at, and participated in, many conferences, seminars, training sessions and other events for many years, sharing her experiences and what she has learned living with FASD. Read more of CJ’s blogs here

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