Jan Lutke's Strategies for Parents and Caregivers
Yukon 2002 Prairie Northern Conference on FAS

2002 Jan Lutke

Please note that while all due care has been taken to accurately transcribe this address, errors or omissions may have occurred during the transcription process. NOFASARD takes no responsibility for these errors and this is transcribed in good faith. For purposes of the written rather than the spoken word, small changes in grammar and wording have been made.
I guess we need to look at this whole issue around functional independence in society. If you can't budget and you can't make your money last and you can't make change properly and you don't understand values, you just might be going to be taken advantage of a whole lot as an adult.

Society says, "Get on with it". A lot of the adults I work with are on disability social assistance and they cannot, if they are handling their own money, survive because they can't make it last.

Have any of you have seen the "David" video. David did his first solo grocery shopping bought $80 worth of food for what his support worker spent $40 on. The bottom line is if it takes you twice as much money to buy the same stuff you are going to be hungry real fast.

Tina tells us the story about a young man she took to pay some bills and he gave a $10 tip for a $1.95 item. He said to her "It's not very much money!" But he had no idea. He didn't know. He just didn't understand. He didn't know. They can't understand those things.

The money is spent right away. As soon as money is in their hands it's gone. Now! Instantly! Impulsively!

I can't tell you how many bills Kirk has run up over the years. The first thing he sees he buys. He acknowledges now that he can't have money and he can't handle it. He just can't do it. Kirk will buy things and then take them back three days later and buy it and take it back and buy it and take it back.

He gets his disability cheque on the fourth Wednesday of the month and by that Friday if he has the money - it's gone! He said to me "Mum I can't do this I just can't do it". I said to him "Well you know, that's OK, you don't have to do it. That's why people are here to help you."

My 20 year old for instance (FAS) is a sitting duck for advertising. She watches the Shopping Channel but luckily she is quite developmentally disabled so she doesn't have access to money because her dad is her trustee which is good because she is always on that phone for anything she sees on that Channel - she wants it right now! If it's advertised then it must be true.

That's where the lack of critical thinking comes in. There is no understanding of how long money must last. What's "how long"? They have no sense of time remember - how long is a week? Well how long is it? If you can't tell how long money must last then you have a big problem. They are easily, easily, easily taken advantage of. Cheated and lied to.

My 27 year old met these people who told her that all she had to do to get money out of the bank was to put an envelope in the machine and then it would let you have money. So she did it! And whose picture is on the video camera defrauding the bank? She said "Yes, but they told me to". Can you imagine how the bank viewed that? It went over really well! It did not work. But she believed him because he TOLD me! We had a terrible time keeping her out of court.

I am a real fan of trusteeship for money. I think that the reality is that to help these people have some success at life, somebody else needs to have the responsibility for the money. Two signature bank accounts - Kirk can't get money out without my signature. He has to convince me that what he wants is OK. No bank cards, no credit cards.

CJ still can't figure out why you have to give the bank back the money when you buy something on a card. I once tried to explain to two of my other FAS kids that I didn't have any money for something. They said "Mum just get some!" And I said "But I don't have any". And they said "Just go to the bank and get it." I said "I have no money in the bank".

My 17 year old said "I will show you how to do it" So we went to the bank and put the card in and my son was very patient with me and said "Mum just put it in this little slot and it will give you money - all you have to do is put it in." I said "But you have to have money in the bank." My son said "Mum this is a money machine - it gives you money - that's what it does!" I thought "Oh my lord! She doesn't get it". She just thought it was a money machine.

Direct pay all their expenses. This is what we have tried to set up. In social services all their expenses are direct paid so that the person with FAS does not have to assume responsibility. Rent, groceries, and medication - everything is direct paid in one form or another. The money that is left over is given daily or weekly depending on the individual.

We have disability services officers who do this for these kids. It depends on the individual. I do it for a couple of my kids but with others I wouldn't touch it with a ten-foot pole. It's not fair because the money will be a bone of contention therefore don't make the family the heavy. With these we set it up with the bank. They can't have bankcards, they can't withdraw more than a certain amount each day. Standing orders for groceries - if you look at the whole issue not just with money but the interaction between the two and having to go and do grocery shopping. It is an overwhelming task for many people with FAS.

If there is a standing order and the grocery store can get it ready - there are on-line grocery stores - you can set it up. You tell them "This is what my adult child can have every week". So they don't have to choose -it's too much. Which jar of peanut butter do I buy? CJ goes nuts in a grocery store - too many choices. By the time we leave she is bouncing off the ceiling. It's just too much for her - 'WHICH jar of peanut butter? There are too many!!" I say "Any jar will do". But she needs to know WHICH jar - she is very concrete she needs to know which jar. Picking a jar of peanut butter is very standard unless you have FAS.

We do the same thing (standing orders) with other places. We call ahead and say to the storekeeper "Such and such is coming - this is all he needs to buy and this is the only thing he needs to buy." Volunteer shoppers are good too. I don't know why we don't make better use of volunteer agencies for adults with FAS who are trying to do this on their own.

Instead of demanding they do it we can say you can do it with help. If they can do it then you let them do it but if they can't you get them help! Same thing with medications. Often times they don't get their medications because they don't have the money to buy them. So that is something that needs to be done and direct bill.

And providing information to an adult with FAS - you have to say this is the way it has to be rather than give them an option or a choice. We have got some of our social workers now looking after some of the adults doing it this way. They have finally realised that if you give them (people with FAS) choices then all you are doing is setting them up to fail and that's wrong.

They have a right to be successful so sometimes information is presented as this is the way it has to be - not giving them an option like "You can have your money this way or we can direct pay now or we can give it all to you - NO! This is the way it has to be". And that requires rethinking some things. And I always say "It's easier to build a fence at the top of a cliff rather than parking the ambulance at the bottom."

And what we keep doing is parking ambulances at the bottom instead of building the damn fence. Build a fence so they can't fall off the cliff. Our kids with FAS need the fence.

So we need to look at competence and capacity in terms of handling money and that never gets assessed in my opinion rarely, rarely ever until there is such a mess that somebody just takes away their right to do it instead of working right from the beginning.

Disability specific officers for handling some of their money and financial support trustees - there are the issues we need to really come up with. Removal for the responsibility of making choices. If a person has a real difficulty making choices it is NOT fair, its terribly unfair of asking them to make the choice and then getting mad at them because they have made the wrong one.

I would suggest to you that development of FAS models and FAS units is critical. We have so many people with FAS that we could start to form a kind of community living division of social services that deal specifically with people with FAS whether they are children or adults.

Their needs are unique and they are different and they require some very specific expertise and we have enough of them in this country, we could do that and it would work more effectively. I am not a fan of allowing people to fail I am a fan of creating success for people with FAS.

Disability Social Assistance should be a right of every person with FAS who is unable to work. They should never be forced to be on unemployment welfare they should be on disability social assistance which respects the fact that this is an adult with a disability. They get all kinds of bits and pieces which makes their lives easier and makes their families lives easier.

We also have some disability social assistance officers who only handle clients with a disability so they are looking from a disability model.

Inheritance money should be managed otherwise it will be gone - not on them but on other people. So parents of children with FAS make sure you organise before hand what the money will be spent on and when. If the Public Trustee will not get involved then we have another problem which needs to be addressed. We are talking a disability here - it has to be addressed.

Relationships - The lack of friends and partners and families - the sexual issues and promiscuity and the victimisation that goes with this problem is dreadful. It is so critical for many adults it is downright scary. Kirk talked about the 15-month relationship he had - he only had one - no other relationship would last more than 2 weeks in his entire adolescent and adult life.

That was one very very wonderful girl, I love her and he had asked me to explain about FAS to her. He said "Mum I really, really, really love this girl would you please explain to her about FAS". I did, we had a long, long talk about FAS and all those other issues and she said "I can deal with it I can handle it". And it lasted for 15 months. Then she said to me "He just doesn't get it."

It was terribly devastating for him because she wanted him to get it. When you are a parent you understand that they don't get it and you understand that you can't make people get it if they don't get it and it is really hard. The only way you can understand it is living with someone with FAS. In the end she couldn't do it and she almost destroyed him in the process and he said to me "I don't think I will ever have anyone who will love me."

It was terribly, terribly sad because he needs more than just his family. He's a 27-year-old guy, he would like to have a girlfriend and he's got such wonderful good qualities but there are some things he just doesn't get and you can't MAKE him get it. It's like saying "grow up". The whole thing around social relationships is critical with him. I am a real fan of building circles of friends when they are young which is what we have done with CJ but this can only be done if we KNOW what the diagnosis is.

But I don't know what is going to happen when she finishes school this year I truly don't and I'm frightened. Where kids with FAS feel most comfortable is with other kids with FAS, they have so much in common. Yet we find people who say "We don't want to put them together." Where do you find your friends - with people who are most like yourself and you can share things - what is wrong with that? Nothing!

I think we need to rethink that one - organised social activities for them and support groups that can help them get to know one another can be a really good thing. They say, "We are normal, we just have FAS". Who's the dumb one here? Who doesn't get it? It's not them it's us! We are the one's who create, by the way, the shame and the stigma that is often associated with a diagnosis of FAS. There should be no shame and there should be no stigma. There should be people getting their act together here and saying "You know what? Let's just deal with it."

One to one support and supervision for those at risk either from sexual offending. I have a problem with the way we treat sexual offenders - they are not predatory usually, they are opportunistic but they are not predatory. We also need to be aware that any therapist working with them if they are classed as FAS and classed as an offender, they (the therapist) had better know FAS.

Sometimes the worst thing you can do with people with FAS is to put them in group therapy or maybe talk about something like offending because then they get stuck on the thought. Then there is no telling what they might do - hell you're stuck on it you might as well act it out. Always think about what the FAS piece is in this and how does it affect this particular person before you make a decision about what you are going to do.

Relationships require a lot of outside work and support in order to work. I would like to see us try to set up things for unaffected partners and friends that they could get FAS specific training and counselling and a lot of personal support themselves so that they can learn how to better relate to the person with FAS.

When I look at my son's girlfriend. We did a lot of that at the beginning but we did less and less of it and I look back and think we made a big mistake. She needed something and didn't know how to say it. I need to be able to have certain things if I continue to be with Kirk. I have no doubt about the fact that she loved him but she couldn't do it.

She ended up going to the same therapist but it was too late and frankly I wish we had done that all along because she was a wonderful girl and he really deserved to have someone to love him but it has to be someone who understands that he cannot help some of the things he does and its not done on purpose and its not that he doesn't care its because he doesn't always understand.

And the parenting thing - I really take offence to the idea that people with FAS neglect and abuse their children - these are terrible words. I've never met a woman with FAS who has neglected her children. I have had lots of problems in parenting where there are things they didn't understand or mistakes they made but it wasn't because they were neglectful or abusive or they didn't love their children.

We so-called "regular" people get frustrated and if we get frustrated - we all know what we are like when we get frustrated - these people are frustrated all the time and there are things they don't understand. I have a real problem with this one because I know too many women with FAS who could loose their kids. Most of them do at some point.

I think we all need to acknowledge that they can't do this without support and as a person with a disability we should be thinking they have the right to have that support - unfortunately some of them are "too smart" to get that support (NB People in the US have to be below a certain IQ to be eligible for some disability support services and often people with FASD have a "normal" IQ and so are not eligible regardless of their behavioural and neurological problems). This is terrible to be too smart to get the help you need but not smart enough as far as society is concerned. We are going to penalise you every way we can instead of supporting you so we need systems that are immediate and I mean immediate on-call help.

I know in our office we have a 24 hour line and if it is an emergency they get an immediate response no matter what time of the day or night it is. Its automatic! If we get calls that are not emergencies then they do wait but especially for our mums it is immediate.

Baby and home support? Why not? And daily check in systems - we need to come up with things that work for them. One woman told me that it's the daily home support and the person who checks in three times a day and says "OK have you done this? Do you need to do that? What's happening now? What do you need me to do? And ask, ask, ask but she says these are the things that get her through.

I have been telling the adults at home "There is no such thing as a stupid question and anybody who tells you that is a stupid person. There is No such thing as a stupid question. If you don't know you need to ask and I don't care what the question is, if you don't know ask, ask."

CJ for instance will ask ad nauseum all the time, because she has been taught "If you can't remember, ask; if you don't know, ask." And she finds teachers who can't stand it and I say "Don't even go there". These are her coping skills and if she needs to do it do NOT stop her because it's what she needs.

Co-parenting approaches. Why should a woman who cannot parent on her own and we don't give her support have to lose her kids for good? If she is not able to do it without help then lets give her help. Please consider co-parenting. I have a 15-year-old daughter with FAE and her mother is diagnosed as FAS.

Her mother lost custody of her child for good when she was 15 months old. We agreed as part of the court hearing that we would adopt that child because we were her foster parents and we would keep her mother involved all of her life and that's what we have done. We co-parent - when her mother is able and when she is sober because she has a serious alcohol problem which is basically killing her. When she is sober and when she is able she helps and when she is not, she doesn't.

Why should she have to loose everything just because she has a disease - that is alcohol and a disability. I think unless there are huge reasons not to do that then I think we need to rethink it which means looking at different models of adoption or foster care whatever, that don't necessarily - sometimes I look at this and think "Why don't we just adopt mom and the kid?" I know one family in Vancouver where a Social Worker approached a very experienced adoptive family, she just called them out of the blue and said "I want you to adopt these three kids and I want you to adopt their mother with them." And they said "All right!"

They knew what they were doing, they were experienced with kids with FAS and they did it and they have had those children now for nine years and mom and mom is like their oldest kid and mom is able to be involved with her children as much as she can. Why not? Get creative! Instead of breaking it apart and producing more problems - get creative!

Group supported living! Why can't we do almost like an adult foster home where instead of the foster parents being parents maybe there is a grandparent age and they do the support - mom and kids are going to live there like for a couple of months with a couple of kids. If they didn't loose their babies then they might not be having more (babies with FAS). That's reality. Particularly if you had a fourteen-year-old daughter who had a baby and she was your daughter.

You would not let somebody step in and remove the baby, you would say "Excuse me - my daughter, my grandchildren, we'll parent!" And that will help her and that maybe what we need to think about and just because mom still needs that kind of help like when she's 14 and now she's 30 we just do it, if we can.

There is a very innovative thing here called Project Homebuilders, it's a very innovative social service model that's been used in a couple of the states off and on where social workers is a real "social" worker and carries a maximum case load of four and she is available to her families 24 hours per day and anything that needs doing - if the floors need to be washed she gets down there with them to show them how to do it, if they need to shop she shows them how to do it.

She does REAL social work and this is the old-fashioned social work where we don't sit and talk we teach hands on and are involved. And maybe that's what they need to be considering with a lot of our people with FAS. What do they need to parent? What kinds of support do they need and what would it look like?

They need on-going, long-term support because the disability is life-long so that what it needs to be. It ought to be their right! We need to re-think what we mean by social services in some respects because we do need to look at this - what are they supposed to do and how do they do it.

We are making a lot of social services agencies so top heavy with paperwork they can't function that's the reality. We are also not funded properly and they keep cut, cut, cutting which says something about what we really think about people. And again I suggest to you that we really need to rethink. And as the people with the most invested, we are going to have to get tough and start really effectively lobbying and saying "We want things done differently. This is where our values and beliefs are and we want it fixed!"

But it starts with people getting together and talking. So those people who can get jobs can't keep them. They want to work but are unable. The reality is that most of them can't do it. So if you have poor job performance, poor social skills, poor time management and you can't follow directions - you know what? Rethink again! Why are we insisting that the only measure of success as an adult is that you must have a job? I would consider Kirk to be a very successful young man particularly in the last two years - he doesn't work - he can't. Its not that he won't - he can't. It's not that he doesn't want to - he is not able to do it without what he needs.

He needs job coaching he needs support on the site in order to do it. When he has that he does really well, every time they withdrew those kinds of things he couldn't do it, but he could do other things. He can do speaking, he can do mentoring he can do all kinds of things and do them really well and it's very valuable work. And he should be allowed to do that and it should be considered just as important as anything else.

If he is able to work and do paid work - great! But if he is not then he should not be penalised for that. Part of it is we are not finding out what they like to do and supporting their skills. Several people said to him today "You should be a motivational speaker." Well what would be wrong with that? I know he could do that! I know he is going up to the FAS summer camp to do a whole day with them, they have already hired him for that and he is very, very proud of that and why not?

What would be wrong with that? That is something he can do really well. That's reality right? We need to get creative and say, "Let's create REAL WORK that they can do."

Job coaches, if you want to have success in employment, job coaching for many has to be long term. And parents you know your children better than anyone else advocate for him or her. You can say, "I disagree with you and I know my child better than you". You just have to get up and say that and they are all going to hate your guts but they go home at the end of the day. So the person who should be making those decisions should be the parent. They have a vested interest and know the child better than anyone else especially as they grow up. So they need work which matches the employees needs and the employees ability and you know what? It is perfectly doable.

We need to get job placement people out there specifically working with people with FAS and there is one in Vancouver and they have started. It's going to be specifically for people with FAS and they are not going to handle anyone else and they are going to match and create and find them jobs. So they are going to have consulting services around FAS for an employer and they will be able to troubleshoot. The employer will be able to pick up a phone and say, "OK this is what's happening - what do I do?"

Think about how many people there are out there with FAS and how many people each person with FAS knows, how many family members they have. Think about your buying clout in Wal Mart or the ABC Restaurant or whatever we are talking about. We are a huge group. One percent of people in society have a disability. Those are the stats coming out of the NIAAA (National Institute of Alcoholism and Alcohol Abuse). Do you know how many people that is in Canada? Three hundred odd thousand people in Canada. That's three hundred thousand people who probably have how many million attached to them in some form or another?

If we start to mobilise and use that power positively I think that we could go a very long way with this one. Think of how big an issue this is in Canada. The numbers are dictating political movement.

There is no other disability in Canada that has this number, nothing that comes even close, nothing even close in the world.

OK - disability services should remain in place when people with FAS are working, they shouldn't loose it. Also employers should have tax breaks. We should be able to say "Hire a person with a disability particularly a person with THIS disability and we'll give you tax breaks." We need to get the employers educated. We need an FAS specific job program - that's a fact!

Self-esteem and self-advocacy. I think that the talking does an enormous amount of good for people with FAS. I don't think there is anybody better to teach us and think we have more to learn from them than they do from us by far. I think that all the adults I know and the young adults that do the talking on panels is so good for their self esteem, being able to field questions and answers. How do you become a self-advocate? You have to start talking that's the first thing you have to do. You have to be able to talk about yourself.

And you should know that the FAS Conference in Vancouver next February is going to showcase the talent of people with FAS - art, writing, it's going to showcase the whole nine yards. And they have art students from all the art colleges lined up to do all the background - they are really going to go all the way and do this properly. So if you have kids or adults of any age who can do any kind of art work anything like that and you want to submit it talk to me! The goal hopefully is to have enough things to do a book where all the royalties from the sales of the book will go to people with FAS.

They are going to have these art works displayed all through the conference and this is a big conference and they are going to display it everywhere. We are already getting stuff - we are actually being inundated. It's at the end of February next year in Vancouver and this is a big one every two years.

These are things that they are really good at, they have wonderful skills many of them - any kinds of art work or writing. And mentoring mothers - who is better to mentor someone with FAS than another person with FAS who has been there and is a little bit older. They can mentor. We are using many people with FAS to mentor other kids. Obviously there are safety considerations and these have to be considered. But often times they can do it really effectively. They need access to one trusted support person, truly do with an understanding of the diagnosis and accepting the need to ask for help. We really need to get better at teaching them that it's OK to ask for help and how to do it.


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