We all want to be ‘normal’. We want our kids to be loved. When things go wrong, our instincts are to put on a smile, pretend ‘there’s nothing to see here,’ and to brush past staring strangers. But sometimes that just doesn’t work anymore. This post is about our journey in reaching out to others about our son’s FASD diagnosis.
The issues that made that process of opening up so difficult began long before we had that acronym to hold onto. We fought hard to adopt our son. We had to wrestle with the complicated system. We also had some of our closest family members and friends challenge us regarding the risks involved. As older parents we were aware there were risks. We had faced this head-on earlier. Despite the odds, we did not do any of the advanced tests during my earlier successful pregnancy. We were ready then to love any child who came our way. We approached the adoption the same way.
And yet, I deleted some photos from my camera the very first day we met the friendly, determined and curious child who would complete our world. We were entering the interim adoption period while we were waiting for things to be finalized and I simply could not handle re-opening those horrible discussions again about the risks and I knew those photos would raise eyebrows. That night in the hotel we had one of the deepest conversations of our marriage. I remember looking intently at those pictures, saying something is not right. We had to face this, we didn’t turn away. I remember a warmth in the room, a closeness. The next day we asked some follow up questions in the baby home. We were told, no, he doesn’t have Downs Syndrome. We had wondered about this from the photos, although it wouldn’t have changed our decision. (We now know we were looking at the full facial features of Fetal Alcohol Syndrome). They asked if we wanted to see another baby. We declined. We both knew without a doubt we were not going to change this course. This child who had so intently looked into our souls, he would walk his path with us. We would hold his hands forever just as we once promised each other. We would not be shopping for a baby.
The early post-adoption years were full of therapy after therapy after appointment after appointment. We asked the hard questions, had rounds of genetic tests. Nothing specific was pinpointed. Not once did the possibility of Fetal Alcohol Syndrome pop up and we cannot understand why we ourselves didn’t think of it. People understood he had sensory issues and various physical issues. It all seemed natural for someone who had been in an institution for 16 months.
Life at home grew harder as our son began to grow. We used to be very social. We used to have lots of friends over for dinners. We used to go out often with kids or without. But as time went on, it became harder to think of a babysitter who ‘could handle’ looking after our youngest. It became harder to think who wouldn’t mind it if something awkward happened while we were out somewhere. It became harder to find energy to focus on ourselves as a couple. It became harder even to talk about it with family. Our parenting wasn’t working, something was wrong. Bedtimes would go on for hours. Time outs would become raging battles. We were unable to get through even one store without some sort of holy hell breaking out. But we couldn’t really talk about it, as we had assured everyone we understood the risks and we were prepared for whatever happened. We would say we’d had a ‘hard day’ but somehow that was simply not translating into any kind of action from those around us. Once when I complained someone said, “Well, why did you have kids then?” That one off-hand comment shut me up for another year or two. Still our son was young enough that an hour at a playground screaming wildly around the walkways on his scooter at 100 miles an hour and some death-defying swinging was still a guaranteed release.
So then, The Diagnosis. He was 10. We had resisted the earlier autism diagnosis. Autism had been discussed from those initial days, and he just didn’t quite fit the profile. But this Fetal Alcohol Syndrome diagnosis was different somehow.
“Irreversible brain damage” is a phrase that can knock the air out of your body and make you wonder how you will find the strength to get the next breath. It can send all kinds of heavy doors slamming down on a future that you once dreamed for your child. To know it could have been avoided can leave you gasping from the cruelty that exists in this universe. At least, that is what it can feel like at first. It is a hard, hard thing to hear.
All those test scores and numbers and percentiles pile up. They seem so damning and so cold. Even as they rattled them off after their imperfect testing sessions, even as we fought back knowing these figures did not capture our son’s abilities and strengths, even as we were being bombarded with some of the most horrible news we could have been given, we were already planning how to package this for the people in our world. We wouldn’t tell them everything. No need for them to know that part of it. We would wait (a year, it turned out) for the full report, then maybe we could go into more details. We did share some of it, carefully, with a very small circle (leaving out some key numbers, leaving out the worst of it). Having a diagnosis did help especially with those family members who may have been thinking he would just ‘grow out of it’ or that he was just ‘being naughty.’ But none of us, not then, really understood yet what a diagnosis of FASD meant.
The process of beginning to understand how our son’s brain works took time. Figuring out how to explain that to others around us was daunting.
We were stunned and we grieved. We swallowed the mind-boggling implication of the statement we were told as we received the diagnosis that in the UK, “There is no protocol for post-diagnostic support” for a person with FASD. Having just been told our son had brain damage, we were simultaneously told there is nothing being offered to help us move forward with that news. We stared at the reports and then put them away. I think I slid into a mild depression, which isn’t an easy thing to do when there is a special needs child in our home needing constant attention.
Meanwhile, we took to the internet. We googled. And googled. We found some of the national groups via our google searches. (That too was confusing as there are several networks even in a place as small as the UK, all with similar names, similar purposes.) Despite having been advised by UK professionals not to look at international information that might not apply here, we devoured it all. Science crosses borders. The information became overwhelming. I started an online “Pocket” folder to keep track of the websites – with tags so I could search more easily for different information (FASD brain, FASD education, FASD prevention, etc).
We started with the school which had zero experience with a child with an FASD diagnosis. It became obvious we needed to get them information quickly. We prepared a whole binder full of some of the best practices. (Some of the articles are here.) While there is a balance in not overloading the very busy educators, no one in this school at least was going to have the excuse that they didn’t know where to find information. We started to talk with the teachers about FASD nearly every day at drop-off and pick-up specifically about some of the tactics we were learning. We worked cooperatively. We made some decisions when our son was in Year 6, facing national tests that the schools had been aiming toward since those students walked through the door. He did not take the SATs. We had a long relationship with the secondary school, since our kids both attended every holiday workshop they offered. We met early on in the spring with the SENCO at the secondary school he would be attending the following fall, again, armed with a fully loaded binder of information. We planned his transition carefully.
But even still, we were floundering at home. Everything was hard. Our days were chaos. We were concerned about the impact of this atmosphere on us all, including especially how it might be impacting our older son.
My husband and I had a serious talk about how we could no longer pretend everything was ‘normal.’
This was a key moment. I am sure I was pushing him a bit out of his comfort zone, but we agreed to widen the number of people who knew about our son’s diagnosis. I needed this. I was becoming too overwhelmed. We were overwhelmed.
We started a secret Facebook Group. People have a lot of negative to say about social media, but it’s a tool that can be useful. For us, this was a key turning point. This was the moment our lives began to feel a bit less lonely and really, it’s a simple thing to do for anyone who is on Facebook already. Facebook has a feature that lets you add selected people to a ‘secret’ group – this is different than the closed groups of the various FASD networks. For our secret group we chose who we wanted to start sharing information with. We chose a mix of family, friends, a few colleagues, people we know who have children with special needs, and others. This was our first message to the group. We had an overwhelmingly positive response.
“Dear friends: They say ‘it takes a village’ and this is our virtual village. We are inviting you to join this closed ‘secret’ group because you have shown over the years your love for our son and our our family. We have recently learned from the UK’s leading expert, that he has fetal alcohol syndrome, the effects of which have been compounded by early neglect… He has neurological damage that has resulted in difficulties in his ability to perform executive functions (i.e. – more abstract thinking). This condition, they say, is severe and lifelong. He functions very well with support. He is mainstreamed in public school and is performing well, though at a lower level than his age group…He has amazing strengths – he is an exceptional gymnast, he is great at music/dancing/singing (we have been told he may have perfect pitch), and he excels at other individual sports, esp. swimming. He is a generally positive and loving child. He has ADHD, without the inattentive side of it. He does not have autism due to his social reciprocity abilities, but he does have some restrictive repetitive behaviors. Our purpose in setting up this group is to allow us to discuss things a little more freely, using FB to our benefit, without having the full group of FB friends and colleagues see this discussion, as we want also to respect his privacy and dignity. (As a ‘secret’ group, only members can see the group, its members or its postings.) We have been struggling as a family for a long time now. We know we need help. Part of that is widening the number of people we share this journey with. We are not trying to exclude anyone from this discussion, but we don’t want the numbers to get too big, or we will be replicating FB itself… So we welcome your thoughts, insights and fellowship along this path.”
We also started to squeeze in one small social activity. We started to attend coffee mornings on Friday mornings with a group of parents from the school. We began to help initiate these as well. The purpose is not solely about FASD, but it allows us time to chat informally. Some family members began to come. Our network grew a little stronger. This group includes the men who came to school with red-painted nails when they heard our son was being teased for having red nails on a school dress-up day. Heroes, one and all.
We started to blog. We decided we had been having so much trouble finding all the resources that we might as well make that research available to others. We also decided we needed a way as a family to further develop our own thoughts and to process the experiences. The very first entry, “Meltdowns,” was explaining how we finally understood our son’s brain works differently:
“Spectacular meltdowns occur almost daily – things sailing across the room, accompanied by increasingly spicy vocabulary, gestures, and appalling rudeness. Deep distress and frustration boils out and over us all. But now we know none of this is heartfelt or intentional on his part. His brain just can’t stop it at this moment. The important thing is not to hold a grudge, because our child has a remarkable and admirable capacity to move on from such moments, to spring back with a great big hug and an ‘I’m sorry.’”
We started to attend support groups. This was another pivotal moment which we wrote about in a post about “Support and Resilience”. Suddenly, even our worst case scenarios were not so scary. We met people who have been through those worst cases and told us there is always hope.
We continued to arm both of our children and our family with information about FASD. We have gently been giving our younger son more words to understand himself. We have given his older brother more detailed information. We don’t belabor any of this, but we are educating our family unit with the information we all need. Our older son has a space on the blog where he can write when he wants to. An auntie has joined as a guest blogger as well, addressing issues of how to engage extended family in these discussions. Some of her posts have become the most widely shared, proving so many of us need help in engaging extended family.
We started a local support group. We talked openly with the pediatrician, and viewed her as an ally. She too felt the need for much greater education and resources in our area. She encouraged us to start a local support group. She attended our first meeting and shares our information with relevant families. The group started small, with only three people. A few months later we now have approximately 20 people and we are all learning from each other. The network is growing as more people are aware we are here. We are becoming tied in with regional services for potential adopters, other groups with special needs kids. Our posters are now hanging in local hospitals and doctors’ offices. We are working collaboratively where possible.
We have become tied into national and international networks, including adults with FASD. This is the most significant change for us. To have access to adult role models with FASD, people who have been there and who can tell us what our child is not yet able to explain….wow. That’s mind-altering, horizon expanding power and insight for we parents of younger kids.
This weekend we ran an educational table about FASD at a school fete at our sons’ old primary school, along with a game to get kids to come over. We made a simple display focused on the theme that different brains work different ways, and it’s okay to be different. We handed out flyers, announced our next support group date.
People tiptoed around it all a bit. It’s a heavy topic for a festive environment. But we know it’s important to start slowly and build step by step. It felt good to have our little one there, proudly helping. It was wonderful when both our sons were helping the little kids with the games. It felt a little bit like we’d come full circle as a family. We entered that school so many years ago, with one child that none of us really understood. And here we were, strong. Confident. Committed. If even one person filed away the messages, and if someone one day reaches out for help or avoids a drink while pregnant, then it will have been well worth a hectic day in the damp and cool British summer.
Our family is still on a journey. There are others who are so far ahead of where we are in our understanding, others so much better able to help or give advice. We don’t claim to have the answers. We are barely able to handle the still increasing challenges in our own home.
I am not trying to imply this path is easy. In fact, it has been unbelievably hard lately.
But, even then, even when it feels like the weight of the world has landed just right smack on top of your weary and battered shoulders, even then it’s possible to look outward a little.
Finding the courage to open up to ourselves, our family, friends, colleagues and community about these struggles has in fact helped us immensely.
We are getting back more from this process than we give. We can see past the walls we felt slamming down during those early post-diagnosis days.
There is Norwegian saying, “the path is made by walking it.” We don’t know exactly where this all is heading, but one thing is certain. Moving forward is so much better than standing still.
With a little one who is constantly changing, who flies and flips with great zeal into every day, whose life is a rollercoaster of emotion and impulse and love, we simply can’t be static. For him, we have to be brave enough to tell the world who he is, where we are at, and what we need to make it through the moments, through the days, through the stages. And to reach out to others to find out what we don’t know.
If it ‘takes a village’ to raise one kid, then it is also our job to contribute to the community. In the process it’s the basis of a good life, the kind of life our parents taught us to live. The kind of life we are teaching our sons to live. Beyond the fear.
If you haven’t done so yet, go on. Take just one step. It feels good.
Just read this also related piece about the added challenges of reaching out from the perspective of a birth mum – The Look of Horror When I Tell You My Child Has FASD. The stigma of this diagnosis must be overcome. We have to break through these walls to help our kids, and to protect those yet to come.
P.S. This is being posted on Father’s Day. My sons and I are oh so very lucky to have such a great man in our lives. I can think of no better way to celebrate Father’s Day than to reaffirm the joys of this (somewhat daunting) journey with a man we all love dearly. He didn’t get a card, life’s a bit nuts, so here’s to you @FASD_Dad!