Living a solitary life

Jim Day
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At a glance, Julian Larivee is just another energetic three-year-old Charlottetown boy ready to tear up the floor and bounce off the walls.
A handsome lad with an infectious laugh, Julian opens his mouth to speak but manages only noises. The sounds are pleasant enough but they are a
frustrating substitute for words.
Julian was diagnosed with severe autism on May 6, 2008, in Toronto.

Living a solitary life

At a glance, Julian Larivee is just another energetic three-year-old Charlottetown boy ready to tear up the floor and bounce off the walls.
A handsome lad with an infectious laugh, Julian opens his mouth to speak but manages only noises. The sounds are pleasant enough but they are a
frustrating substitute for words.
Julian was diagnosed with severe autism on May 6, 2008, in Toronto.
During this time, Krista MacGillivray observed her son regressing into himself more than he had already. His eye contact was always fleeting but he had lost all eye contact.
"He was lost in a solitary world which we have been struggling to change,'' she said.
MacGillivray and her husband, Aaron Larivee, watch with great anticipation to see their boy develop through an ongoing regiment that includes 40 hours a week of applied behavioral analysis therapy. They have seen a lot of improvement.
"I am so hopeful for Julian having a fulfilling life,'' said MacGillivray.
"I pray that he will talk soon and leave his solitary existence behind . . . He has made some gains but he has a lot of challenges ahead of him.''
The couple lives in a modest home on a modest income doing their best to manage astronomical expenses associated
with the extensive care of Julian.
Well over $20,000 will come out-of-pocket this year to pay for costs associated with travel, medical expenses and therapy.
The generosity of extended family members is a blessing.
An upcoming fundraiser should also help ease the family's ongoing financial burden.
Funds that are raised from the annual Delmar Currie Memorial Benefit Golf Tournament at Glen Afton Golf Course this year will go towards the boy's expenses.
Last year, the tournament raised $15,200. Merina Currie, co-owner of the course, hopes this year's event will raise $20,000 to help curb the mounting bills of little Julian's parents.
The tournament runs Sunday, Sept. 20 with a shot-gun start at 9 a.m. The format is two-person team scramble (best ball). The cost is $90 per team for non-Glen Afton members and $60 per team for members.
To register for the tournament, call the pro shop at 675-3000.

Organizations: Glen Afton Golf Course

Geographic location: Charlottetown, Toronto

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Comments

Comments

Recent comments

  • very
    June 21, 2010 - 20:42

    hey there Another Autism Mom - your comment was great, you asked a good question.....Darlene and Karen have knowledge about this, which is what I was hoping for......you weren't tearing apart a family Another Autism Mom - not at all.

  • Danni.
    June 21, 2010 - 20:41

    GO AFTER YOUR HEALTH MINISTERS
    (both)GET SOME ANSWERS ,YOU'RE
    INTITLED ,DON'T BE BULLIED,IF THESE PEOPLE WANT TO BE RELECTED PUSH
    AND PUSH ,ONLY WAY YOU WILL GET
    MORE HOURS AND HIRE MORE PEOPLE
    WITH BETTER WAGES, THEY BOTH MAKE ENOUGH (ministers)iF IT WAS THEIR CHILDREN THEY WOULD GET THE
    40HRS ,DON'T FOOL YOUR SELF
    GOOD LUCK TO YOU ALL ,GOD BLESS.

  • Joe
    June 21, 2010 - 20:40

    Our son could use 40 hours of Intensive therapy each day as well, however we cannot afford it.
    ----------------------------------------------------

    The known universe can't even conceive a 40 hr. earth day.
    Sucks to be them/it.

  • Thankful for good health
    June 21, 2010 - 20:39

    Or maybe what little the PEI goverment does cover is not even remotely close to what is recommended to obtain the highest level of recovery possible...I know if my child were affected I'd want the best treatment I could get them, not just what will be paid for.

  • Karen
    June 21, 2010 - 20:38

    I suspect you are right Darlene. Having a special needs child we have learned firsthand that wait times are ridiculous and even with recommendations for government funded treatment . Treatment isn't always accessible because of the lack of qualified professionals and/or difference of opinions . Another Autism mom it sounds like things are working out for you and your child and that is fantastic but that is not always the case for everyone unfortunately. Congrats to Ms MacGillvray for all she has done and will continue to do for her child :) Good luck to you !!

  • jypsy
    June 21, 2010 - 20:35

    How many hours is 40 hours? Read this poster presented at IMFAR (International Meeting for Autism Research):
    Pervasive Developmental Disorders Specialized Clinic, Rivière des Prairies Hospital, University of Montreal

    HOW MANY HOURS IS FORTY HOURS? RANGE OF TREATMENT INTENSITY IN LOVAAS (1987)
    M. Dawson, L. Mottron

    Abstract here: http://autismcrisis.blogspot.com/2007/03/imfar-2007-abstracts.html

    Poster here: http://www.sentex.net/~nexus23/IMFAR_2007_Dawson.pdf

    My own son started grade 1 not able to speak and graduated with his peers, with honours and awards. He received no ABA/IBI by our choice. Want to know more - go to thejypsy channel on Youtube, there are over 70 videos covering his life from 1yo to the present there (including some shot in his PEI classrooms)

    40 hours is a workweek - in the best interest of providing the person providing the treatment with full time employment, not necessarily in the best interest of the child. The Autism Society of PEI (and others) claim 48% of children diagnosed can recover with early intensive intervention using behavioral principles and structured teaching. but fail to tell you that number is based on using aversives. Are aversives being used or promoted for use with autistic children on PEI?!

  • Hey Wait a Minute.
    June 21, 2010 - 20:33

    Hey wait a minute LocalResident I also read AnotherAutismMoms response and unless I am way off base I took them to be simply questions regarding the cost of treatments.

    Comments such as these:

    It's not like this article is about a mother blowing her money on VLTs

    and this Maybe they leave island to go to a place where family's with Autism help each other, and aren't so petty and jealous like you seem to be.

    Are the comments I question...perhaps you should examine your own obvious issues.

  • April
    June 21, 2010 - 20:33

    I would like help clear up some questions that were addressed in the above comments. This is a story to raise awareness about the upcoming golf tournament in aid of a family affected by autism. As a mom of two children affected by autism and a friend of the family in the story, I can attest to the incredible costs associated with treating autism.

    The PEI Government does provide funding for 20 hours of IBI treatment per week at $10 per hour for front line staff. When a child is diagnosed by the PEI Preschool Autism Assessment team and are given a diagnosis that they are on the Autism Spectrum, with no specifics on whether it is mild, medium or severe. This family did receive a diagnosis off island which prescribed that the child should receive 40 hours of intervention per week due to the level of severity. Each child is unique and is affected differently and should be supported as an individual. This is one of the challenges of our local model of service delivery. The wage of $10/hour has been in place for the past 11 years and in many cases, families have to top up the hourly wage out of their own pocket in order to recruit or retain qualified staff. I haven't met a family who could afford to do this, it is a need that they feel has to be met. Some do get support from family, friends, fundraisers or charity groups, etc.
    There are cases of parents in other provinces who re-mortgage their homes or even go bankrupt in order to provide intervention for their child(ren). It does not make a parent bad for not providing additional hours for their child, it truly depends on the needs of the individual family.

    Autism is a medical condition and IBI therapy sometimes is not the only intervention that a family has to deal with. There is limited expertise on Prince Edward Island and some families choose to travel to Medical Professional outside of PEI.

    Darlene: There are at least 2 families in the PEI IBI Program who left the Island for an Autism Assessment. Yes, the cost for the assessment was out of their own pocket, but they made a choice that the waitlist of 12 months was too long of a wait. It is very unfortunate that Government professionals have told you that you would not be able to access services on PEI if you did this. In a sense, parents are being bullied to wait it out for both a diagnostic assessment and IBI therapy. There is no policy to back this claim up to my knowledge.

    Which leads me to my final point. A person questioned the quality of service of our local program. It is a very good question. One that really can't be answered. Some families are happy with the intervention provided, while others have not had a good experience with the current model of service delivery. The Government will claim that it is a high quality program, but have no data or statistics to back this claim up. As parents, we only have one choice for IBI therapy on Prince Edward Island which will be funded. If anyone does have a problem with the service, there is no second opinion or process of accountability that is in place. It is their way or the highway. No agency or service is perfect, but in my experience, bad therapy is worse than no therapy.

    It would only be human for any family of an affected child to be jealous of the additional support that Krista and her family will receive through this fundraiser. It is amazing that Merina and Harley Currie are donating the proceeds to Julien for his therapy through the Golf Tournament. Thank you for supporting autism on Prince Edward Island.

    For those parents who are upset by this story, please share your feedback by sending a letter to Minister Greenan (treatment) or Minister Currie (assessment) to share your voice about the current model of service delievery.

    For those who would like to know more about autism, please watch the video, Autism Everyday which can be found here: http://bit.ly/PUrSG

  • I Agree
    June 21, 2010 - 20:29

    to Joe: sorry for the typo
    ~~~~~~~~~~~~~~~~~
    Our son could use 40 hours of Intensive therapy each WEEK as well, however we cannot afford it.
    ~~~~~~~~~~~~~~~~~
    some people nit pick the littlest things when there are so many more important things to worry about geesh.

  • Doesn't make sense
    June 21, 2010 - 20:28

    I just want to point something out that doesn't make sense: commenters say that there is treatment for Autism on PEI, however they also say that their child needs 40 hours a week of treatment, but are currently given 20 hours of coverage. Why is it that there is a 20 hour discrepency? If 40 hours is recommended, what good is giving a child half??? Isn't that like saying someone needs insulin to combat diabetes, but then are only given half the required dose, yet still expected to be healthy? Anyone know this answer?

  • doesn't make sense
    June 21, 2010 - 20:26

    Cornwall mom, don't give up your hours!
    No one on PEI gets 40 hours, but in ABA (applied behavior analysis) the proven weekly hours required for progress is 40 hours. The least for very high functioning kids was 33. 20 hours was an agreed upon number by desperate parents looking for services 12 years ago when they had nothing; it's not actually a proven and duplicated number for success. The 40 hours comes from Lovaas who created the ABA treatment.
    Jypsy: That's great that your son became successful in life without ABA, however this is not the case for most children affected by Autism. Positive Programming based on principles of reinforcement and encouragement is actually what is being promoted in the field of ABA. Response cost (or as you have put it, aversives) is an alternative method. For example, if a child does not clean their room, they do not get to watch t.v. that night. It's a natural response and yes, aversive to the child.

  • MOTHER WORRIOR
    June 21, 2010 - 20:20

    Having worked with special needs children including Autism and seeing the challenges parents go through, the last thing they need is to be judged. These parents would stop at nothing to do whatever they can to help their child. The faster these children can get help the better. There is a waiting list on the Island, but once you get through, the people you will work with are very dedicated and will do anything to help these children and their parents.

  • very
    June 21, 2010 - 20:20

    Thank you for posting the comment, Another Autism Mom. Indeed, why would anybody be spending that much money if the treatment is free in PEI ? I'm looking forward to some comments from parents on this because I don't have any kids and don't know anything about autism.

  • Darlene
    June 21, 2010 - 20:18

    My 3 year old daughter was diagnosed with Autism as well. She has been receiving speech and occupational therapy since February and has a SNA at daycare who was working with her. She starts the IBI this month and it is covered by the government. The only problem was the wait. There is a long waiting for diagnosis and then there is a wait for the therapy. We looked into getting a diagnosis off island but were told that if we did, the government would not consider it a diagnosis and we could not get on the waiting list for therapy. I assume that is why this family is paying for the therapy. There is alot of work needed by the government in this area and families get frustrated by the wait, especially when with Autism, waiting is not the best thing. The people that do work in this field are helpful but they can only do so much, more people need to be hired.

  • I Agree
    June 21, 2010 - 20:08

    I didn't comment right away on this one, I thought I would wait and see what came up. I too have a child with Autism and I was a little upset with this story. I am not upset about the family receiving help, but it makes me upset about the treatement available for my own child.

    My child is nearly 5, is autistic and has never spoken a word either. What I don't like is that because we don't go public with our issue that money is not made available to our son for extra therapy.

    Our son could use 40 hours of Intensive therapy each day as well, however we cannot afford it. We have two other children who are older and normal bills like everyone else. We live on a tight budget. The only therapy that my son receives is what is funded by the gov't. Which includes 20 hours of IBI and an SNA to help during the other 20 hours of the day. Unfortunatly there is no extra money available to hire someone for more than what I get for funding, nor provide extra money to top up the poor wages that the IBI tutor recieves.

    I am not looking down or putting down the family, Kudos to them for getting the support, but I feel that since we are more private about our family that we don't have access to the same type of support.

  • Another
    June 21, 2010 - 20:07

    I was simply enquiring as to whethere there was another benefit of going off island (i.e. is the IBI different? Better quality? How does it happen ?) Is this something I should be doing as opposed to the PEI system?
    Gosh I was leaving for work and was trying to get the comment in before I left with my children. So you can stop judging me!

  • Cornwall Mom
    June 21, 2010 - 19:58

    Can anyone explainhow the treatment of 40 hours a week works. Does the family have to live away to receive certain weeks of therapy. The travel cost is mentioned so this is what I am assuming. Must make it hard for the family to not have the stability of a day to day routine if that is the case! my child receives 20 hours a week but our case is on the mild side, the hours may actually decrease.

  • another mom
    June 21, 2010 - 19:58

    I think the waiting list is the biggest problem. Waiting extended periods of time to receive a diagnosis only prolongs the stress on the family, and delays and progress the child could make in treatment. I have a child with a suspected autism spectrum disorder who failed to be seen as a preschooler and is currently on a year waiting list to be seen off Island because diagnosis isn't available after the children hit school. Because he was also previously misdiagnosed we have been fighting for years to make things better for this child. PEI might be the smallest province in Canada but that by no means says we have to have the least amount of services available. I am happy for the family in the story that they are able to get what is needed for their little boy, there needs to be a lot more awareness out there.

  • another parent
    June 21, 2010 - 19:53

    HI there

    I don't think this story is very well written it start on a story about a child that has Autism but stops in the middle of the story to start with another story about a golf tournment that is also lacking in information there has to be more to it then 36 two person teams because it doesn't add up to $20,000 at $90 and$ 60. This is just me but I till to give to a group of children/group of adults then one family so I will donate my 60.00 to the autism fund. However saying that all the best to the Macgillivray/Larivee family for doing everything for your son. P.s I also don't understand what your income or what your house has to do with the story. To everyone else is their no support group on Pei that you can bounce ideas together.

  • Erin
    June 21, 2010 - 19:52

    By reading this story and the comments posted I have to step back and count my blessings. I have a beautiful 18 month old son and each day he is coming out with a new word. It is so exciting for us and him when does come out with it or just the other day he finally put the parts of the face togethor ie: nose, mouth & eyes and was so proud when I started clapping and saying well done. I feel for these parents and I would like to think that if it were me ( thank heaven's it isn't ) I would absolutely everything under my power to get him the help he needs. I think the fundraiser is a great idea. Even if the money does go to them directly at least Autism is getting reconized. Maybe the next time a reader wants to make a donation somewhere they will remember this article and donate to the Autism Society....I know I will
    To all the parents that are dealing with this issue: You are so strong, hang in there. Your children deserve all the help they can get
    God Bless

  • LocalResident
    June 21, 2010 - 19:41

    Here's a thought...instead of tearing apart a family who is taking every cent they have to help their child, lets applaud them. I don't understand the mindset of people who can't be happy when something good happens to someone other then themselves. It's not like this article is about a mother blowing her money on VLTs. Give your head a shake 'Another Autism Mom', you of all people should be showing support since you know better then most ppl what this child is going through. Maybe they leave island to go to a place where family's with Autism help each other, and aren't so petty and jealous like you seem to be.

  • Another
    June 21, 2010 - 19:38

    How come the expensive treatment... the treatmet is available here for free.
    Even at that age.