Monday, Aug 5th, 2013
When I met Susan Bell* in her large, Surrey home, I was immediately struck by how ordered and tidy it seemed, especially considering it’s home to several teens. I had pictured a far more hectic, cluttered place.
Susan ushered me into her equally immaculate office, and we spoke for two hours about parenting kids with FASD. Susan, an adoptive parent, is direct, honest, and she doesn’t sugar-coat any aspect of this complicated issue.
As well as her wry humour, what came across was her dog-with-a-bone approach to life. She is a master advocate and a fierce defender of her children.
I left with my head spinning through a combination of information overload and intense frustration that services for children and adults with FASD are so woefully inadequate, and almost totally unmatched with this group’s unique needs. Susan pointed out that there are some prospective adoptive parents who don’t go ahead and adopt a child with FASD because they are aware that our social system simply isn’t geared up to meet their needs, and they don’t wish to go it alone.
"I call FASD an experiential disability. You can't see it, but boy, do you experience it! If you personalize your child's behaviour you're done before you even start. With FASD the only thing you can't change is the child."
Many children who are waiting to be adopted have diagnoses of FASD. Of course, FASD is an umbrella term used to describe the group of individuals who have been damaged by prenatal alcohol exposure. All these diagnoses involve brain damage - there is no “better” diagnosis to have - all can be equally disabling. All are permanent.
I asked Susan what she would like prospective adoptive parents to know about parenting a child with FASD. It was difficult to listen to much of what she said. However, if these children are to get the parents they need and deserve, it all needs to be expressed. Here’s some of what we covered during our conversation.
Sioban Rowe: What advice would you give to someone considering adopting a child that has been prenatally exposed to alcohol?
|Alcohol exposure in utero can affect every system in the body, so it's important to watch for any sign of health problems.|
|Although a child with FASD may have a chronological age of 14, developmentally they may be close to eight years old. This might mean that your teenager still enjoys playing with toys.|
Susan Bell: Read, read, read. When you’re considering adopting a child with FASD, ask not only, “Can I do this?” but also, “Should I do this?” Lots of people shouldn’t. Some parents go ahead and take the risk because they desperately want to be parents but, for them, it isn’t the right decision—and then it’s the wrong decision for a child, too.
Even if you know about FASD from books and workshops, until you’ve parented the child you don’t really know the reality. Typical parenting doesn’t work.
I call FASD an experiential disability. You can’t see it, but, boy, do you experience it! If you personalize your child’s behaviour, you’re done before you even start. With FASD, the only thing you can’t change is the child.
I really like these kids. I know I can’t fix them, but, at the same time, I don’t think they are broken. These are kids who never quit trying: they’ve got guts and gumption; they are sweet, loving, genuine, caring and compassionate.
Parenting a child with FASD requires the parents to make a huge shift in thinking about being a parent and what is “normal.” If you understand that FASD is a result of a brain injury, you’ll be more successful. If you are not good at making huge changes in how you think about things, don’t parent a child with FASD.
I believe that there is a genuine innocence with these kids. Even when they get into trouble there’s no guile or intent: they take - they don’t steal. Once you grasp that, it’s much easier to parent them.
If you are thinking about adopting a child with FASD, ask yourself how well you can ignore what other people say about yourself and your child - as a parent of a child with FASD you tend to get a great deal of advice, and lots of criticism. You must also ask yourself whether you can be the sort of parent who can work with a team to get the best for your child, and if you can work with lots of different professionals.
It’s also important to remember that these kids don’t leave home at 18. I hardly know any that are living on their own successfully. They need “wrap-around” support in order to function. If that support is withdrawn or reduced at any point, it could be disastrous. This all means that parenting a child with FASD is expensive. There is very little help with these costs, and they are long term.
When considering a child with FASD, you have to look at your skills very carefully and consider your worst-case scenario and if you can live with that should it happen. There is nothing predictable about these kids. One father said to me, “The only consistency is the inconsistency.” They might steal a car and swear it won’t happen again - until the next time. There is always the stress of waiting for the other shoe to drop.
If you don’t do good self-care, and if you need other people’s approval, you’re going to find it extra difficult.
Parenting a child with FASD may also cost you your family and friends. They may not be prepared to understand why your child behaves as he or she does, and they may not be prepared to tolerate it.
School is often a problem area for children with FASD. How do you handle this issue?
"These kids don't leave home at 18. I hardly know any that are living on their own successfully. They need 'wrap around' support in order to function. If that support is withdrawn or reduced at any point, it could be disastrous. Parenting a child with FASD is expensive. There is very little help with these costs and they are long term."
A chronic health designation, which can mean your child may get access to a teaching assistant, is hard to get. Schools will often say that a child doesn’t qualify. Don’t take “no” for an answer: go away and build your case. You frequently have to frame that case in a way that makes it a liability or safety issue - if your child doesn’t get the help he or she needs, he or she, or the other children in the class, could be in danger.
Kids with FASD will often talk well and present well. They are big healthy kids. This belies many of the problems they have and raises expectations of what they can achieve. They may be amazing talkers, but not necessarily understand 90% of what is said to them.
Children with FASD are also sitting ducks for victimization at school and are often accused of doing things that they didn’t do. I’ve had a kid say to me, “Help me remember Mom,” when they’ve been accused of stealing something and they simply can’t remember what happened. When they are aggressive, it’s usually as a result of extreme frustration.
I handle the school issue by being very proactive. I carefully pick my schools and, if I can, the teachers my kids have. My teens go to three different schools. They don’t do homework, and I pull them out when I think something too stressful is coming up. If someone is going to insist that they do difficult math and I know it’s not going to work, I pull them. Education has to be useful to and useable by a child; otherwise, it isn’t education.
I don’t allow my kids to fail. If it’s looking like they are going to, I pull them out of school. I want them to feel good and have success—these kids aren’t resilient bounce-back kids—they are fragile and we have to acknowledge and respect that.
We need FASD specific school programs (like they have done so well in Manitoba). What we are doing in BC doesn’t work for kids with FASD, other kids, or the teachers.
I believe that we should take the five years of high school to work out how to get a child ready for adulthood, not to drum geography into them.
If a child seems to be doing better at school or in other settings, the worst thing to do is to slack off and allow services to be withdrawn. The child or young adult will still need them because the reasons they needed them in the first place don’t just suddenly disappear.
You don’t often hear about the success stories—and there certainly are some; at the same time, you also don’t hear what it took to get there!
What issues are there around obtaining services and funding for people with FASD?
|Children with FASD become easily overwhelmed in everyday situations, which may result in unpredictable behaviours.|
|Highly stimulating environments such as malls, fast food restaurants, busy stores, and places with loud music may be too much for your child to take in and process.|
|In areas where your child is expected to focus and concentrate, reduce the number of potential distractions such as posters and items on shelves.|
|Try to keep only one toy out at a time--have a rule that toys need to be put away before another toy can be taken out.|
|To indicate possession of an item, put a photo of the child on that article.|
Our community living services are based on a model of independence and self-determination that assumes a certain level of competence that matches IQ. This doesn’t fit most people with FASD. Most people with low IQ have a similar level of day-to-day adaptive ability. This is usually not the case with people with FASD. Their ability to function on a day-to-day basis is lower than their IQ might indicate. Tragically, many services for people with disabilities are allocated on the basis of IQ, not on the ability to function. This leaves many kids with FASD without decent services and adults with FASD without an income or necessary support. So that even when they qualify (based on an IQ below 70), the services may not be effective. However, the vast majority of individuals with FASD are simply not eligible for services, and there is no funding that one can apply for. To get Persons’ With Disabilities funding, which provides a little more than welfare, is very hard. The 23-page form is arduous to complete and the whole system is designed to deny.
Most of us define ourselves through meaningful work and relationships. For people with FASD both of these are huge problems. Many of our kids find it hard to keep friends and form relationships; there probably isn’t a more socially isolated group of people in our society. They desperately want to fit in and are easily led to trouble. This can end in problems with the police and with alcohol and drug abuse issues. These kids need constant protection, support and supervision.
How do you handle these dangers in your family?
I don’t give my kids the freedom of the typical teenager. I’m very involved in who their friends are, where they go and what they do.
I describe my parenting as authoritative, not authoritarian, and I do my best to make sure that our family life is interesting and fun. Sometimes people will say to me, “Sooner or later he has to learn from his mistakes.”
I reply, “He is not going to because of his disability.” If he could, he would already have done so. No one chooses to fail.”
This is long-term labour intensive parenting. You have to constantly think about what you do and how you do it. For instance, if I ask one of my kids to lay the table and they forget the forks, I don’t say, “You forgot the forks!”
I say, “Oh! Can you put some forks on for me as well?”
I find that if I slip back into regular parenting, my kids slip back too. I don’t bother with consequences—they don’t work for these kids. Instead, I redirect them; for example, “Mark, go and do X.”
These kids are so often misunderstood. They often can’t remember what happened, so they lie to fill the void or to get out of the situation they do not understand. Poor memory is a huge problem, but lack of understanding by other people, is an even bigger one.
What is the relationship between FASD and attachment?
Attachment is a cause and effect relationship. The baby cries, the parent responds and this cycle happens again and again and a bond between parent and child is developed. When FASD is involved (and we know there is a problem with cause and effect and memory) this process may not happens in the same way. Of course, attachment develops. I know my kids love me and that they are attached, but, I do think that there is a difference. My kids are attached as well as they can be, but it does feel somewhat different. Of course, the number of caregivers they’ve had during their lifetimes also makes a difference.
Are we doing enough to educate parents considering adopting a child with FASD?
Adoption Education Programs don’t tell people enough about the realities of FASD. We have to be far more hard-hitting and remove the stars from people’s eyes. Adoption is about finding a family for a child, not about finding a child for a family. The MCFD should make post-adoption FASD support and education groups mandatory. These kids deserve permanence. They deserve a family and they deserve to belong, and, to get that, their parents must be properly prepared, educated and supported over the long term.
*Note: names have been changed to protect privacy.