It’s not secret a that raising someone living with Fetal Alcohol Spectrum Disorder can be super frustrating.
Caregivers not only have to deal with their loved ones with life long organic brain damage, they also
have to deal with social service systems that often times have no idea about this devastating disability.

It’s because of this that caregivers are exposed to more frustration, which if not properly expressed can
cause everything from serious health risks to probable break down of the entire family system.

In this post not only am I going to share why I am making a weekly day to vent but I will also share the benefits
and importance of venting.  I am also going to share the better, more healthy way to vent and where you can do it, too.

I have just recently finished my very first Caregiver Kicks Start -  a program I put together which included my e-book and a months worth of live group coaching calls with myself and other people in the  Fetal Alcohol arena. It was a huge success and a great experience for me! The reason I mention this is because once we where done the coaching calls and caregivers were able to call in and share their frustrations and really VENT, they left feeling happier and more hopeful for the future.

The problem is that there are a lot of caregivers who aren’t venting.  This is serious! I think it’s because sometimes the frustration is that we KNOW they have an invisible disability -  but we get caught in believing they are more capable then they really are.  I know!
It’s  because sometimes, they can do some things “really well” and sometimes they even exceed our expectations!  Because the brain is so on again-off again, we feel like we are going crazy!  So, we keep it bottled up inside in fear of looking like we really are nuts!

You are fighting traditional thinking all the time – the school, your family and of course, the person living with the disability.  So, any attempt you make to vent, will be met with resistance, I am sure.

I think another big reason we don’t vent is because we don’t want to scare off any remaining friends that we do have or seem like a nag to those that are supportive in your life.   When I was a foster parent, I didn’t get very much time with friends to begin with, so when I did,  sometimes I would focus the conversation about what they were doing.  One reason I did this was because it was a good escape to talk to the “normals”.  And,  two – I didn’t want to feel like I was a whiner and never get invited out again.

Because I didn’t know the importance of venting, what happened to me is best explained by psychologist Jeffrey Root in Jennifer E. O’Brien’s article, Venting Therapy.  Root says, “It’s kind of like water dripping on a stone, and over time that stone gets worn down.” You see, I really thought I was as solid as a rock, but even a rock can get worn down over time.  I eventually had to give up fostering full time – partly because of my lack of understanding in the importance of expressing how hard fostering someone living with FASD really is.

In a WebMD post titled, “Get Well. Get Angry” it states that bottling your anger (in women) is linked to heart disease, high blood pressure, gastrointestinal issues, clinical depression and even some cancers. Yikes! I don’t think anybody wants to sign up for any of that.  So, what do we do about it?  If venting is so important, how do we do it in a constructive way?  How do we do it without coming off as weak or a chronic complainer?  Well, I’m glad you asked.

You know, venting doesn’t have to be just a verbal dump of all your frustrations and problems.  You can vent in other ways that are just as effective.  Let me share a few examples -

Kick the Crap out of a Pillow
Seriously.  Put the boots to it…yell, curse, even pretend it’s the school principal or a social worker that’s given you a hard time.  Treat the pillow like the men did to the copy machine in OFFICE SPACE (*link includes strong language).  This is a positive way to vent. If someone says they don’t feel better after doing that…then you are looking at a liar:)  The only way it’s not positive, is if you attempt to do this in front of people – please don’t.

Be Creative
If you are creative channel that anger into creating something awesome.  My sister Joanna is super creative.  I knew when she was upset because she would sit in her room and do paper mache while Tori Amos blasted from her room.  When I could hear that, I knew she was working things out.  She swears it was effective and allowed her to empty all the issues she had kept up inside.

Walk it Out
If things with my guys became to much for me I would go for a walk as soon as I got the chance.  Not only did going for a walk help calm me down, it also allowed me to brainstorm what I was going to do next, and how to handle another crazy crisis.

Cry
Enough said.  Sometimes a good cry is all it takes to help you move on. Tara and I don’t always see eye to eye when it comes to movie choices, if you know what I mean, but sometimes all it takes is a good episode of Undercover Boss or The Biggest Loser and I’m a mess, I can’t help it. It’s a great tool to use in the fight against pent up anger that is for sure.

Put it on paper
I’m sure you have heard this before. That writing out what is bothering you has tons of positive effects in your daily fight for survival. You can write a letter or e-mail to yourself.  Check out this link.   It’s a really neat site that you can use to do just that – remind yourself from time to time how good you are feeling and why.  There are lots of caregivers that write me with clever e-mail subject lines saying “This is just a vent” or  “You don’t need to respond, but I just had to say…” or  “I need to get this off my chest”.   These caregivers don’t want me to respond – they just wanted to get it out, so to that, I say ‘sure’.  If you need someone to write to, be my guest.

You see, what you find is that when you release all of the frustration and anger that’s built up, what you end of leaving is room for answers and the ability to handle intense situations that you are often left in on a daily basis while raising someone living with Fetal Alcohol.

I’m changing Wednesday to Ventday because whether we like to admit it or not, we need to make room for it.  Once a week every week. By doing this not only are you setting yourself up for better health, but you’re also setting your loved one up for success by creating a more relaxed environment.

If you need a place to vent let me provide you with the following -

My e-mail is Jeff@fasdforever.com. If it’s just a vent let me know in the subject line.

My facebook FANPAGE. We just reached over 1,800 fans! Yahoo!  There is tons of discussion and Caregivers just like yourself
have the opportunity to vent with people who are going through the same challenges and situations as you are. Chatting or venting with someone who actually gets it is always easier – and it’s because they really do, get it!

So, now that we know venting can be full of positives it’s important that you take the time to do it.  The number one factor in making sure people living with Fetal Alcohol are successful is a stable placement and the only way that’s going to happen is to make sure YOU are stable.

So make sure to make every Wednesday your Ventday!

CALL TO ACTION:
The Call to Action is to VENT – so by all means do so in the comments section.

If you know of any other positive ways to vent by all means, share:)

By Ann Kagarise

There are experts and there are experts. I don’t have a degree in genetics. I don’t have a PhD in anything. In fact, I don’t understand a lot of what goes on around me without an interpreter. What makes me an expert? My mom drank when she was pregnant with me. I might not understand the brain, but I am still an expert. I have lived with this FASD brain for over 40 years.

I look like the average adult. I have blonde hair and blue eyes. No one would notice anything different about me just by looking at me. Most of what is wrong with me, people can’t see. Unseen things are hard to understand. I know that one first hand.

When I was first adopted as a baby, I was diagnosed as failure to thrive. My toddler years were spent in constant struggle and by the time I hit kindergarten, there was something noticeably wrong. My teacher contacted my adoptive parents and told them I needed testing. FASD was not a diagnosis back then, but the neurologist had bad news. He informed them I had significant brain damage and I would not even graduate high school.

Struggling was all I knew. If I was going to do what the other kids were doing, I simply had to find a creative way to make it happen. Struggling was more than everyday life. It was every moment life. I couldn’t see words like other kids. My eyes did not converge and I had no depth perception. So, I saw two of everything and the world was flat. Yes, Christopher Columbus, the world is flat…to some.

I couldn’t cut like other kids. Scissors and buttons have never been my friends. I knew if I was going to make it in this world two things had to happen.

Number one – I became the most determined kid in the school. I might have gotten C’s, but they were C’s I earned. I learned how to learn. I adjusted. My life has been a continuous Thomas Edison quote. When he was inventing the lightbulb, he said, “I have not failed. I have found 10,000 ways that won’t work.”
Well, we all know what lights the room at night.

I know what it feels like when everyone in the room knows you are struggling. They told me I would not graduate high school. I got a master’s degree. They told me I would never hit a ball. I practiced hours until I was hitting home runs.

I know there is a lot I am not able to do. Sometimes, that’s hard for me to accept. Sometimes, I blow up in frustration, but I blow up because I care. I blow up because I want to do things on my own as much as my loved ones want me to. I want to understand the world around me as much as everyone else does. I really don’t want to have to look to others to interpret. I want so badly to understand what everybody else understands, BUT, I have to accept that I have to incorporate help in order for me to be my best.

The second thing – I CAN LIVE with FASD. I might not be able to ever figure out my bank account, but I have an external brain that knows how. I might not be able to hear everything that is said, but if one of my interpreters is not there, I can always turn on my tape recorder and play it back later to get all that was said. I might have to rewind a few times to catch all the words because of auditory processing disorder, but I learned a way to beat my own brain.

I found my passions. Sure, there are so many things that people with FASD cannot do, but there is plenty they CAN do. I found I am not the best verbal communicator, but I can write. I love photography. I became a professional writer and photographer. I was a journalist/columnist for almost a decade, wrote a nonfiction book, just finished my first novel and have online photo galleries.

Hopes and dreams don’t have to be gone when a person is diagnosed with FASD, they just have to be different.

Call To Action:  What are some strengths your loved ones living with Fetal Alcohol have. What CAN your guys do?
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when we are dealing with crisis after crisis as a caregiver, social worker or heck, even someone living with Fetal Alcohol it’s nice to see

someone doing well.  The following video is from an evening I spent with a young boy, William and his Godfather Jeremy.

You see Jeremy is a World Champion is Karate and runs United Family Martial Arts in Niagara falls Canada.

This was a big day for William as he was receiving his new belt for the completion of his Yellow Belt test. The following video is William’s test and

afterwards, an interview with Jeremy. Enjoy

Call To Action: Do you know a success story? Then please share in the comments below.  It brings other caregivers hope when they hear

and see others do well, which at the end of the day is what we all want right?

By Tara Soucie

I can’t go. I don’t have time. Too much to do. He’s at it again. Argh! Sink is full of dishes. I am way too tired. Piles of laundry. Does this sound familiar? I bet it does.

When Jeff and I were primary caregivers for an FASD teenager – life took a backseat. More particularly, our health and for me, my waist

My relationship with food and distaste for the gym didn’t start when I was a caregiver, but how could battle my weight when I was just barely hanging on with work and life? Food was my friend and I just didn’t have time for the gym. That’s just the way it was.

When I reflect back on my experience as a caregiver to a young person with FASD, I see how my unhealthy choices put me right back where I started – chubby and unhappy with my self image. See, I should mention that before we took on the role as a caregiver I had been focusing on my health and was even able to lose almost 50lbs. Well, as you can imagine, living with someone with FASD, no respite and little training was a recipe for disaster and a reunion with forty of those pesky pounds I fought so hard to lose.

How did I end up back in a stretchy pair of cotton pants with an elastic waist? Well, in my case, I was still working a full time job – with at-risk youth, none the less.  I was working shift work and actually using my job as respite. So silly.  No respite left me irritable, tired, full of stress and looking to avoid home, which naturally took me out to eat. However, I wasn’t eating out alone all the time. When Jeff and I took on the role of caregivers, we had no freakin’ idea how important respite was and just how much we took it for granted.  Because Jeff and I had only so much time to use as respite when we were able to receive support, we would go on dinner dates. It seemed simple enough. No one had to cook and it would give us an opportunity to hang out, chat, catch up, whatever.  Ya – over deep fried this, au gratin that. As if we were about to make smart food choices – we deserved this treat! Didn’t we!?

At home wasn’t always better. As you all know, those living with FASD often have a temperamental palette or crave fatty, salty foods.  Well, our young guy was certainly one of those. If he was having pizza, so were we. When I couldn’t get him to go along with something or do something I wanted – we bargained with chicken wings, pop and BBQ Lays.  I was seriously desperate.

And the gym? Ya right. I wanted to sleep!

Because I could chat about my journey to better health forever, I need to fast forward a few years. Although we are no longer the primary caregivers of an FAS youth, Jeff and I are still very involved with the fas/d community and working on the front lines.  As well, in my day job I am a Community Mental Health Counsellor and work with youth who have been diagnosed with a mental illness.  And because of the experiences that I have gained as a primary caregiver, I am better prepared to support the young people I work with and their circle of care.

So, what changed? Well, as you know I’ve successfully lost weight twice now, but have been more successful this time in keeping it off and making health my priority. The first time I lost weight and really began to learn about food and nutrition was with Weight Watchers. I loved it. It took some time in the beginning to learn about all of the elements of the program, but soon after I was a whiz with counting points and making better choices. Even better was that I managed to lose 50lbs. But, this time around my focus has changed and I am trying to learn more about natural foods and less preservatives. I don’t have to count points, which is helpful with a super busy lifestyle and I have gained a new appreciation for good healthy food. I am just as excited now for healthy snacks as I used to be for a Big Mac. Seriously!

You can do this, too! If you start to make any changes at all, you will see a difference. You can be a more happy and healthy caregiver.  And maybe even get into a smaller pair of pants while you are at it. J Since I have been focusing on my own health and eating more natural foods I can honestly say I sleep better, my mood is more balanced, I crave less fatty foods and sugary snacks and just feel lighter on my toes.

Here are five changes that I made –

1. Drink water! And then drink more.

2. Focus on protein and fibre. These foods will keep you fuller, longer. A few of my personal faves are: apples and nut butter, rice crackers with salsa and hummus or veggies and guacamole.

3. Natural protein bars. When I don’t have time for a real meal, I take a natural protein bar (like Elevate Me!) and a piece of fruit and that will hold me over til my next meal.

4. I eat breakfast, lunch, snack, dinner. I have one more snack if I had an evening work out.

5. Consider working with a professional. I began working with a Naturopathic Doctor and this has really been the key to my success. I attended a clinic in Mississauga, ON called Zawada Health and met the most amazing Naturopathic Doctor, Carol Morley. She has been teaching me about foods that make me feel fuller and more balanced and that seriously taste awesome. I have even completed three natural food detoxes and they have been the real change maker. On my first detox I lost 8lbs in two weeks. If you are at all interested in completing a detox, please check out Carol’s book – The Delicious Detox. It takes you step by step on everything you need to do to complete the detox – from grocery shopping to meal planning.  In fact, she provides you with a two week meal plan. The meals are great and I am sure your family will love them too! Completing a detox would really kick start your new lifestyle – ask Jeff, he’s even completed two of the detoxes with me! Remember, this would only be a two week commitment!

Here’s to a new year! I hope you are able to focus on your health and reach your goals – whether it is to get back into that favourite dress or to maintain your current weight.

Whatever you decide, make it fun.

Call To Action:

I love talking about my health journey and if you do too, please share and come be my friend on facebook. We can motivate eachother.  What health tips and tricks do you use? Do you have a great recipe or food idea that is both healthy and your kids like?

“It’s nice to see someone else living with fetal alcohol”  That’s what I used to think to myself when I got a

Interview with Amanda prt 1
I also teach a little in the second part of the video. I break down the communication errors that often happen between us and people living with Fetal Alcohol. It was a really fun to do and super informative. Check out part 2 here.

Interview with Amanda prt 2

I hope you enjoyed the video’s as much as I did making them. I hope to do this again in the near future.

Is there any similarity’s with Amanda and someone you know Living with fetal alcohol? Could you see how information is processed differently? Leave a comment if any of this made sense

TOP 10 FASD BLOGS & WEBSITES

I would love to think that my website is the only information hub about Fetal Alcohol Spectrum Disorder and the treatment of the disability, but that would be pretty darn ignorant and nothing further from the truth.

I, like so many of you, searched the internet for hours and hours looking for information and answers about fetal alcohol syndrome and if there were other people going through the same thing I was as a caregiver.

The truth of the matter is that the only way were going to get the masses to understand our kids, is to be as educated as possible,and in order to help you with that, I’m providing you with The TOP 10FASD BLOGS & WEBSITES  that I read and use for my own growth and education about the madness that is Fetal Alcohol.  There are some great technical websites and blogs by other caregivers who are fantastic writers and even better entertainers.

So, without further a due, here are my top 10 favourite FASD website and blogs.

10. Losing my Mind

http://www.lordgrantmeserenity.blogspot.com/

This a blog from a caregiver named Barb who has four adopted children: Akila-12, Imani-11, Hezekiah-9 and Zeke-8.  Barb is a great writer and is easy to relate to.  I am a big fan, so please check it out and if you like her blog, don’t be afraid to let her know.

9. Easy to Love But Hard to Raise

http://www.easytolovebut.com

This blog isn’t just FASD specific, however it has a lot of good information about raising kids with invisible disability’s. They also have a book out by the same name. I have read it and I suggest you do to.

8. Much More than Mom

http://linda-rosenbaum.blogspot.com/

Linda is a great writer and touches on relevant topics associated with being a caregiver. I featured one of her posts on my site and it received fantastic reviews. Check it out for yourselves.

7. MOFAS – Minnesota Organization on Fetal Alcohol Syndrome

www.mofas.org

This website is not only really nice to look at, but it’s filled with great fetal alcohol content. They have the Virtual Family Center which you have GOT to check out. Everytime I visit their site, they are adding new and valuable features.

6. FASD Justice

http://fasdjustice.on.ca/

Ok.  So, its not a matter of “if” your loved one with FASD gets involved with the justice system, but often a matter of when, so you may want to make sure you’re prepared. This website will definitely help you do that. This website has sections on everything from help about the  investigation, pre trial and bail. They also have scrolling soundbites on the left side of the page… and you know how much I love soundbites!! Yoink!! I’m going to use some of those.

5. FAS World

www.fasworld.com

Founded in 1999 by Brian Philcox and Bonnie Buxton. This website has tons of great resources and valuable insight. I really like the feature where you can look up various support groups.  Bonnie and Brian also run a support group in Toronto, ON Canada. We have a long way to go to have Fetal Alcohol Spectrum Disorder recognized, and without these two pioneers we would be a lot farther back.

4.Edmonton Fetal Alcohol Network.

http://edmontonfetalalcoholnetwork.wordpress.com/about/

I actually was able to visit this centre last year during my vacation to Edmonton. All I can say is that they know what there doing!!  They have also written an excellent booklet called, ‘Strategies, Not Solutions’ and you can download it for free!  So, what are you waiting for – go get it.

3.Wounded in the Womb

http://www.winnipegfreepress.com/special/fasd/

If you are not aware,  the province of Manitoba are amongst the world leaders in awareness and it helps when you have a newspaper like the Winnipeg Free Press helping with send out the message. So much so, that they have their own webpage about Fetal Alcohol. It’s chock full of delicious articles for you to devour over a morning coffee.

2. FAS Link

www.faslink.org

This website is done by non other then the godfather of fetal alcohol himself, Bruce Ritchie.  Bruce’s website is filled with excellent articles and research done by Bruce. He also has built one of the largest online forums about fetal alcohol on the internet. If you are looking for both education, answers and a devoted community, then you’d better check this site out.

1.     The FASD Learning Series

http://www.fasd-cmc.alberta.ca/education-training/fasd-learning-series-2010-11/fasd-promo

If you really want to become a jedi master about Fetal Alcohol – Go here and learn from here. This website is your own personal FASD conference taught by an all star professional and caregiving cast.  Most of the videos are an hour long and sometimes, to much for me and my ADD, but the beautiful part is that you can press pause. Also, make sure you keep a note pad near, you’re going to want to write down some of the epic insight into fetal alcohol and issues that go with it.

Well, there you have it. It should be no secret now as to where a lot of what I know comes from. Having said that, it’s up to you to learn and apply what these blogs and sites are teaching you. If you do that, you will be on your way to becoming just what your loved ones need – Armed and Dangerous with your new found knowledge!

Call To Action
If you know of a website that you think is pretty sweet that you use and visit often, then by all means let us know what it is by putting it in the comments section below.

By Linda Rosenbaum

I was speaking yesterday to a mother whose child is in Grade 1 and is acting up in school. The kid can’t sit still and, in turn runs around the classroom.  He interrupts the teacher when she’s reading to the kids, he’s throwing stones in the playground, at both teachers and students.  He won’t follow directions, fidgets and gets out of his seat in class without permission.

“They want to do some testing on him, but I’m afraid of getting him labeled,” she said to me.

Whoa! Did that ever set off a trip down memory lane for me!
“I don’t want to get him labeled,” kept resonating through my brain, after she said it.

I was thinking, “Huh? You don’t want to get him labeled?  You actually think he’s not ALREADY labeled? Take it from me. He’s labeled. He’s the “bad kid.”  Though I was not close with this woman and didn’t know her child personally, I decided to share thoughts about my own situation with our son when he was in Grade 1. I’m usually cautious about sharing my own personal experiences with others, but I felt this was too important to let go. I would speak up. The mother would of course make her own decision about her son, but I wanted her to have another perspective on the situation.

When my son Michael entered Grade 1 after several successful pre-school and kindergarten small classroom experiences in a Montessori school, everything started falling apart. Like this woman’s son, he was disruptive, couldn’t sit still, was throwing stones in the playground during recess and didn’t play well with the other children.  Though I knew part of the problem was a large classroom and less personal attention, that couldn’t be the only issue.

I spent umpteen hours meeting with his new teacher and the principal trying to come up with ways to help Michael adjust to a 30-kid classroom, without demanding too much of the teacher’s time. Why should my kid eat up the time of a teacher who has so many other children to take care of?

But the teacher, who was new to teaching, basically didn’t try any of the accommodations we came up with. She saw my son as a serious behavioural problem. He was a kid who “acted-up.” And in fact, he WAS all that she said he was. The problem was, she wasn’t interested in why OR trying to do something about it.

My son was suffering terribly from all the reprimands and disdain from other kids. They started bullying him and calling him names. They liked seeing him get into trouble and purposely triggered him to see him act up. Michael became more isolated and unhappy. His behaviour was getting worse. He didn’t want to go to school anymore.

My husband and I decided it was time to get a psycho-educational assessment. Our family doctor, who had always thought of our son as just a “busy, active” boy who would outgrow his restlessness, agreed it was time. He was getting into too much trouble.

We got an appointment at the Child Development Clinic at the Hospital for Sick Children in Toronto. It was time. Michael was about to be expelled. When they let him back in the following semester, he’d go straight into a classroom for children with behavioural problems. They didn’t even consider the classroom for children with learning disabilities. Nor did we. We didn’t know if he had any.

When I told my friends about the appointment for an assessment, several were shocked, and said so -
“You’ll get him labeled.”
“A label will follow him the rest of his life.”
“Teachers will just see him as a label.”
“He’s just a busy, creative guy. The teachers just don’t appreciate how smart and creative he is.”
“They might want to give Michael drugs.”
“Michael’s just his own person. Don’t let anyone put a label on him because he’s a little different.”

I was pretty shocked myself, but with my friends and what they had to say. Why were they so adamant? What was so bad about a label? What if Michael had a learning disability or other disability?  Perhaps a physical problem that affected his ability to learn and get along with other children in school?  If we understood the problem, we could get help for him. Intervene. He was suffering with the status quo. Do kids act up and get in trouble for no reason?

I began thinking that perhaps people’s stridency against testing and possible use of medication  reflected an ideology more than it did actual concern for the well-being of my son. Some people say, teachers are bad, psychologists are bad, labels are bad, drugs are bad. Maybe, but not necessarily. I’m smart enough to know when I’m getting bad information or advice. No one knows my kid better than I do.  I’m not going to let anyone put my kid on a drug without thoroughly assessing the situation. Why should knowledge or input from other people be a bad thing?

Back to the original issue. Afraid to get the kid labeled?  He’s already labeled.  He’s bad.In our case, after an extremely thorough assessment of tests, exams and interviews, Michael was diagnosed with FAS (Fetal Alcohol Syndrome – now Fetal Alcohol Spectrum Disorder, FASD), brain damage caused by the alcohol his birth mother drank during her pregnancy with him. Michael’s FASD manifested itself in several ways -severe Attention Deficit Disorder (ADD), learning disabilities, mild Asperger’s Syndrome-like tendencies as well as mild Obsessive Compulsive symptoms (amongst others). I learned that children with such symptoms, particularly learning disabilities, often exhibit behavioural problems because of their difficulties communicating, understanding social cues and constant failure in the classroom. They’re acting out of desperation. I would too.

Though it was, to put it mildly, disturbing to get the diagnosis, we had come out of the dark. We knew what was wrong with Michael and had some direction for helping him. There were of course no easy answers about “fixing him,” but we knew Michael was no longer ‘bad’. It also helped us feel less guilty. Bad parenting wasn’t at the root of Michael’s problems, as we often feared.

Sure, Michael got another label to replace the old ‘bad kid’ one, but his diagnosis produced compassion and empathy from other people. Not scorn and disdain. Once Michael was diagnosed, the Toronto District School Board then actually “labeled” him using the term LD (learning disablity) as opposed to “behavioural,”  – their designation for two types of children with special needs in the classroom. He was placed in an LD class, rather than the other, but I often worried about the kids labeled “behavioural” who were sent to these classes. How many may have had problems, whether physical, psychological, emotional or environmental, that hadn’t been diagnosed and were interfering with their ability to function in the classroom?

Yes, it’s true. Michael’s new FASD diagnosis has followed him all his life (Michael is now 24). But along with it, has come a roadmap. A roadmap to help us and other people not only help him, but understand him.

CALL TO ACTION!! If you can relate to Linda’s article please leave a comment and let us know why. Your comments let other caregivers know their not Alone.

If you want to see more Articles by Linda please visit her site at,

http://linda-rosenbaum.blogspot.com

Did you have a fantastic summer? I hope And I also hope that the meltdowns were few and far between and that there were a lot of summer memories created. It is however the beginning of September and you know that means – BACK TO SCHOOL.

I get a lot of e-mails from care givers telling me their frustrations about how hard school is, not only for the person living with FASD, but for the caregiver and even teachers as well.

I said in episode 1 of my podcast that I would hunt down the experts to get you the caregiver answers, well I did just that. I made tons of phone calls and asked people, ‘who would know the ANSWERS?’ How can I help YOU have a better school year?

Well, I found him and to my delight, he agreed to be interviewed. I called up a man by the name of Allan Mountford, and we had a chat. It was amazing!  And the benefit of being able to do this podcast is that I get to learn and implement these new strategies with my own guys I work with.  So, please have a listen and let me know what you think.
Was this helpful? I WANT TO KNOW.

This is only Part 1 and if you liked it and want to get Part 2, then please sign up for my newsletter.  You can do that by visiting www.fasdforever.com. Part 2 will only be released to my subscribers for now (a perk for signing up).

I hope you enjoy listening to Allan as much as I did, so sit back listen, learn and become a better and more informed caregiver.

Fasdforever.com podcast

Jeff-

It can literally happen in a blink of an eye. You had the day planned, you knew how you where to start and where to end and then BAM! Plans change and you didn’t even see it coming and now you’re stuck with no backup plan and that’s when ##$# can hit the fan. It’s bad enough when your child living with FASD does not know what to do next, but when nobody knows what to do...YOWZA. If there is one thing that I know and learnt, it’s that people living with FASD act out when they don’t know what to do. So, in order to decrease the meltdowns, here are a few tips and strategies that have helped me in the planning process.

Don’t have your heart set on doing something because when the plans change (and they will) you won’t be disappointed about not going or following though. But, more importantly, please don’t take out your anger/disappointment/let down on your guy(s) because they either A. won’t recognize that you’re mad (I’ve tried so hard with body language to let them know that I’m mad, but still,no dice) and B. they already feel bad and can’t help it. So, getting mad at them only makes it worse and then we end up contributing to the development of secondary characteristics = not good. If it’s a must that you be there – then schedule whatever it is, knowing that they might not.

Do a practice run. One of the primary characteristics of this disability is the inability to paint a picture of what’s going to happen or where you’re going. You see, when I tell you we are going to the Fair, you have a pretty good idea of what that is going to look like in your head, ie. the rides and the carney folks trying to get you to throw dull darts at balloons, the cotton candy, all that good stuff. Either way, you might not know exactly all the details, but for the most part you are not worried because you have an idea of what your going to be doing. We must remember that sometimes these guys can’t anticipate the outcome even if they have been there before. Example – one of my guys had court and we HAD to go, and my guy had been super nervous about it so we did a practice run – like in a movie. So, he was the guy going to court in the movie. We practiced everything from what I was wearing, to the music we were going to listen to on the way down there. I did my best to make it super fun, which in turn helps him create the pictures in his head of how he was going to be ok and it would be the same the next day. So, when it was time to go to court the next day, he was much more relaxed (which really isn’t that much) and kept saying, “just like in the movies right, Jeff?” Then he would go on to say, “the guy always gets out in the movies.” The whole situation went a lot smoother then it could of had we not had the opportunity to practice. I understand that you might not be able to drive to the place the day before, but even showing pictures on the internet or from a magazine – they will help them paint the picture to decrease their anxiety.

Always have an ace in the hole. It’s imperative that you have an activity or activities to fall back on at ALL TIMES – something you either all enjoy or something you can at least tolerate. Things can change so quick it’s important to have a trick up your sleeve. Example – My guy is really excited to either see someone or go somewhere. Often times, he’s so excited he’s been persevering (stuck) on the event for hours, and in my head I am saying, “please, please, please work out” because we know what’s going to happen if it falls through…It really falls through. Now, if you didn’t have a back up plan and your scrambling at this point, your pretty much (insert favourite verb/noun/swearword). My ace in the hole that day was some X-Box360 points I had purchased for a situation just like this and success! I casually pretended to go to the drawer and then what do you know, I found me some X-Box points!!! I get all fired up and guess what? So did he. Twenty minutes later we’re playing video games and all is well…for now. It doesn’t have to be video games, but use this strategy with any kind of activity they like. My other guy loves Geocacheing, so I say, “hey man, I am sorry that didn’t work out, but I’m glad your home because I have been trying to find this Geocache for a long time, and could really use your help because your so good at finding them. JACKPOT! He felt so good about having to help me find the Geocache and the distraction gave him time to settle down and talk about it.

Here’s my point. Make sure you have a plan A to Z…and a few tricks up your sleeve. If you do this, you will be able to keep your sanity for a few days longer. Remember, people living with FASD need you to be at your best, so they can be at theirs.

CALL TO ACTION: Do you have an ace in the hole? What are some of your planning tips and tricks that work for you? Please post so others like yourself can get some new ideas.

So, here’s how I meet Uzma Kahn. I’m in the backyard with family and friends, celebrating my good friend (and roommate), Colin’s birthday. As the evening goes on I catch up with old friends while making some new ones. Some might say, I have the gift of gab. At one point, I remember looking over my shoulder during a conversation to notice a girl who was visually impaired talking with some other people. I have never spent any time with someone who was faced with such a challenge, so I was instantly intrigued. I excused myself from the current conversation and went over to her and introduced myself. What I found out during my conversation with her was that there was much more to this women then a disability. What I found out was that she is a founder and co-chair of Disability Pride Toronto, which is going into its 8th year. Hmm. What a neat connection to have met right in my very own backyard. We had a good chat and exchanged numbers. So, I decided to do an interview with her and find out a little more. What is Disability Pride all about? And what’s going to happen during this year’s event? I also wanted to find out about her own struggles with her disability and her attitude towards it because she certainly has been able to accomplish so much in spite of the challenges she has faced. Here is my interview with Uzma Kahn. Enjoy.

JN: Hey, Uzma. Thanks so much for taking the time to speak with me. You must have been impressed with my witty banter at the party.

UK: (Laughing) Yeah, that must be it.

JN: Tell me about your background. Who is Uzma and what’s your disability?

UK: I was born and raised with Leber’s Congenital Amaurosis, which is known as LCA. It’s a form of retinitis pigmantosis, which is a type of low vision or visual impairment. This disability is inherited, so I have had low vision since birth.

JN: So, does that mean other members of your family have this as well?

UK: Yes, usually it skips a generation, it depends. If your partner is a carrier then you have a chance of having a child with low vision.

JN: Do one of your grandparents have it?

UK: One of my uncle’s has low vision and so do two of my cousins. My grandparents didn’t, but maybe people above them did. It was pretty common in the village my parents were from in Pakistan.

JN: So, can you see at all?

UK: I can see a bit. Basically, it’s the type of visual impairment that slowly deteriorates over time. So I have never had perfect vision. I also have some blind spots and your peripheral vision starts to deteriorate over the years, eventually it leads to blindness.

JN: So you will eventually be blind one day?

UK: Yes. It doesn’t happen overnight, so I’m not like woah, what happened. It’s something that happens over time. I use a white cane when I go out so I don’t have to explain and people will give me space.

JN: Do you ever get bummed out about the fact that you’re slowly going blind?

UK: You know what, when I was a teen I used to get bummed out. But that’s how teenagers are – you get bummed out about stuff. But, as I started to progress through life and started to accomplish my goals I realized there is no reason to get bummed out, because there is always going to be someone who has a more complicated life than I do. And I should be lucky and grateful about what I do have. I could be in a third world country and not have the opportunities that I have here.
JN: What are some of the biggest challenges you faced?

UK: I get confused between colors. Contrast and detail are also factors. So, one of my greatest pet peeves is when things change on me, whether it’s trying to get to work or get home. Most people have some sort of consistency in their life and mine is coming back and forth from work. As things change on you and there becomes more barriers, it becomes more difficult. Like the escalator you take is shut down or the train is out of service and now I have to jump on a shuttle bus. So, you have to take a step back and figure out what to do next. Do you try and figure out what to do yourself or do you ask for help? So, basically it’s when things change without anyone giving you the heads up. There is always construction going on so I’ll just ask one of the hot construction workers for help.

JN: (Laughing) I see where you’re going with this…your sneaky. If I ask a good looking girl for help, I just get this weird look…but that’s where you can use your disability to your advantage. Uzma -1. World -0.

UK: (Laughing loudly) Yup. Bottom line is, I have experienced barriers over the years. Whether it was at school or at work, but I find attitudes are the biggest barriers of all. However, I have learned that I have to change my attitude first before society will change theirs. The key is changing your attitude and make sure it’s positive. You have to have the belief in yourself that despite your disability you can hit your goals and achieve great things. If you’re at home doing squat, how do you expect people to change their attitude towards you.

JN: Uzma, what’s been the biggest key to your success?

UK: I live with two brothers and a sister who have various disabilities and my parents are getting older, as well. I see the barriers that they have to live with day in and day out. You realize when you’re at home that you’re the able body person. When I am at home there are other people around me with disabilities that are more complex and that kind of is what keeps my attitude positive. I have to be the positive one in the house because if I am not, a negative attitude will bring everyone else down.

JN: What is Disability Pride? And what’s the motivator behind it?

UK: Well, I’ll tell you honestly it was fourth year, university, 2004. I met some folks who went to a different school – they were having a conference at their school and wanted some help, so I got involved. After that we were sitting in a room one day and we wanted to keep the idea of a disabilities conference going, so we thought about putting it under another umbrella. So we started a national non profit organization called Canada-Wide Accessibility for Post-Secondary Students (CANWAPSS). So, on the day we where signing the incorporation papers we thought it would be a great idea to have a march. So, that’s where it started. The march didn’t work out so well. We had about 30 people, but the event at Nathan Phllips Square went really well. So, we focus now just on the celebration.

JN: Ok sweet. So this festival is going into its 8th year?

UK: Yes it sure is. Just to give you a bit more background – our vision is to get as many people together in an inclusive environment of positive synergies and attitudes of being proud. Each year we have a number of performers with and without disabilities. So, this year there are two bands that performed last year. The one band is Ordain and also Symphony of Nine. We also have some comedic acts and some guest speakers. In the past we have had the Lieutenant Governor of Ontario. His Honour is an invited guest. We just have to get confirmation that he can make it this year, and I am hoping that you’re going to come out and say a few words as well.

JN: You Know IT!!

UK: I am definitely looking forward to that.

JN: Yikes! No pressure.

UK: Well, a number of organizations with display tables set up, so they can promote their products and services for the community.

JN: Are you still looking for organizations to come out to the event?

UK: Yes, we are still looking. So, if anyone is interested they can contact us and we can discuss it.

JN: So last question, Uzma? What’s next for you?

UK: What’s next for me? I haven’t thought about that yet. I’m kind of in a here and now kind of mode. I think next I have to find myself a man and have some kids. I think that’s what’s next. I’m stable in my career. I’m a project control officer over at CIBC. That’s my full time gig and my volunteer gig is what I do here for Disability Pride. I have my own house and a university degree.

JN: Hey, you got it going on…that’s what I know. (Laughing) So, calling all eligible bachelors – Come on down to the festival so you can meet the beautiful and talented, Uzma! (Laughing) That’s awesome. Thanks a lot for doing this, Uzma. You’re a great person and I wish nothing but success in your future. And, I’ll see you at the festival.

There you have it folks! It was great getting to know her. Please click on the link below for more information about the festival and if you are in the GTA on the day, please come down and show your support.
And don’t forget to come and say ‘hi’. I would love to have a chat with you. Until next time, stay square…comb your hair.

DISABILITY PRIDE WEBSITE