At the ripe old age of 37

As my Dad found it nessisary to point out that I'm not 37 for another month. Sorry Dad, however I'm not quite old enough for Alzheimers.


At the ripe Old Age of 37

This is what independence means to me:

Together, freedom through access and choice for full-participation
Freedom, to live my life as an individual and to make my own choices.
To accept the risks and responsibilities involved and go where I want (access) to be.
I need to feel comfort and reasonable safety within my own boundaries and to fully-participate in society and in my own life.
(From A Biography Of My Independence….Michelle Laverdiere April 2005)

My name is Michelle Laverdiere I was born in 1968 in Edmonton, Alberta. When I was first born I appeared to be of normal health to my parents however, my aunt, a neo-natal nurse had instinct, which said that something was wrong. This was due to the fact I was slightly “floppy” at birth. I however was able to hold my head up from 3-6 months and seemed to progress averagely according to the infant charts. It cued my parents that something was wrong when I began to have difficulty holding up my head while I was on my stomach and later while I sat in a slightly reclined sitting position. I started backsliding. Doctors were stumped but I was finally after 1 ½ year of testing diagnosed with Infantile Spinal Muscular Atrophy Type II (Then called Werdnig-Hoffman’s Disease) before the age of 2. My life expectancy was from what my family had told me later (as an adult) to be only five years of age.
From what you, the reader can mathematically figure out is that I (at this date, March 2005) have lived to “The Ripe OLD AGE” of 37. How did this happen? The truth is I don’t know?? Doctors wrong??? My guess is that it is a combination of miracles, modern medicine, and perhaps a strict upbringing from my parents. This was not any different from any of m siblings, whom were all able bodied. I was naturally independent and encouraged (sometimes pushed) to be so. My life has been, so far, by no means uneventful. Peaks and valleys (a few narrow escapes) are filling my life, which brings with it, perpetual education and many lessons learned.
I was asked by FSMA to share these life lessons with those parents and children from a new generation, as they are from a different perspective than those of the Doctors and Professional but from someone who was once a child with SMA type II in a world of little information of this a relatively new diagnosis.
About a year after my tracheotomy (March 2003) I wrote a paper which I called “A Biography of my Independence”. {Email me at mlaver@telus.net for a free copy as it is 14 pages, (a bit too long to post) and I will gladly send it to you by email} I focused on this topic as I suffered the loss of my ability to participate within my community due to lack of funding for an attendant and having to move to an assisted living centre. So FSMA http://www.fsma.org/ http://curesma.com/canada/default.shtml have asked me to write a slightly briefer article for parents of children with SMA on how promote independence.
I have had several debates with many people, including those with disabilities on the definition on what independence is. I do not believe you have to physically be able to do things your self but rather a mental state .It to me is the ability to communicate to have your physical needs met, making your own choices in your daily life, and building your own long or short term goals. A good article can be found at: http://www.cailc.ca/CAILC/text/whatisil/intro_e.html . Most of these suggestions apply to children over 2 however my concepts are fairly universal.

Developing Independence In Children with SMA

1. Give your child independence and the freedom to make his her own decisions (even if you think the choice is not one you make) we learn best from making our own mistakes but always be supportive and not leave child stranded. Simple choices can start in toddlers and get more complex as the child grows. It is important for you child to know his\her self really well and to communicate this when necessary. It is easy for someone else to judge needs (E.g. seating) but are not always accurate. Teach your child good communication skills, especially how to communicate their own care needs.

2. It is good to be empathetic (put yourself in his/her shoes) without feeling sorry for you child. A pity party can be very destructive to ones self esteem but acknowledge you child feelings and thoughts and always build up his or her self-esteem. This also means to teach you child to do whatever they can for themselves mentally and physically in a safe manner. Teach the child to safely push his/herself forward without over exertion.

3. Always plan ahead for the future in a proactive way by creating a positive plan with your child for any emergency (hospital stays, attendant no show, ventilation, fire exit), as well as setting long and short-term goals for life). You and your child lean to arm yourself with a good education). Think out of the box for recourse for upcoming problems – students, volunteers, family, friends of friends of friends, agencies, professional’s organizations, and even occasionally government. Think positive long term - it is always possible to have a quality of life even if that means at the worst-case scenario of using a ventilator. .Even if prognosis is grim, it is important to let your child live life with some quality. Often someone with SMA lives longer than a medical prediction so plan very long-term.

4. Keep in mind that your child’s comfort is very important. It is difficult to get good grades and having fun if a child is always in pain. Again ensure his/her corrective braces and his/her seating are not distracting your child from his/her school work or proper sleep. Read as much as you can on pain control should your child need it. Sometimes health issues (such as respiratory ) and Quality of Life are in a delicate balance. www.mdac.ca and http:// and www.fsma.org/ should have articles “pain control”

5. View your child in a (W) holistic manner. A child is a whole person, just as all children are. Even with a disability there is more to your child then his\her physical body, needs to be taken care of, A disability doesn’t make him\her any less a child Any child also has a mind to be educated, a spirit to be nurtured, a heart to be loved and can love back and morals to be taught. Self-esteem and self worth tie into this as well. Some of these areas overlap. And we work at different stages in life, some of these needing sometimes more in one area then the others

6. Use family and friends to help in good times or bad. People drift away when they are not involved and are hard to find when you need them. Building family ties are extremely important especially sibling ones. My searches on personal websites and studies show that many adults with SMA type I or II get isolated and find it extremely difficult to remain active within their own communities. including children who remain living with their parents after the age of 18.

7. Create Interdependent Relationships Our society has a way of viewing people with disabilities as a liability. . Your child is having his/her needs met but everyone gets something back. For example an attendant will be getting wages, or friend might get a emotional reward (feeling like they are needed or appreciated) Make sure these are healthy ones. I made a realization while attending an inclusion seminar with Gary McPherson as a key speaker http://www.garymcpherson.com/I In reality we (People with disabilities) are a major consumers within our economy. Your child is creating jobs and purchasing stock throughout his/ her life- time. Imagine the market crash their would be if all disabilities were cured

8. Always be prepared to advocate for yourself. Professionals often do what is easiest and cheapest. Arm yourself with good and productive educational resources. There are often ways around things and often organizations such as FSMA or MDAC willing to assist. Download The “Self Advocacy Tool” from the MDAC Website. http://muscle.ca/content/?id=37 . Also find others that are in a similar situation as your child, to unite with you to promote change for a better quality of life for children or adults with progressive disabilities. The bigger the group makes the louder. Government tends to give attention to larger groups. So you can include other organizations on homecare for those would otherwise forced into institutions. An example is the “The InSynchrony Project” from is a study conducted by a group of organization representing unique people with progressive disorders located on the MDAC website http://muscle.ca/content/index.php?id=1564

9. Encourage peer support, able body friend and other friend with SMA or MD www.mdac.ca (especially older or more progressed) are good support and can give a unique prospective, assist with support and planning future events or goals. However, able-bodied peers are necessary for social development.

10. Know you child’s Rights and report any abuse. Learn what abuse is how to avoid and report it. http://muscle.ca/content/index (search abuse) or http://www.accd.net/accd_publ.htm (has excellent abuse publications). Often abuse goes unreported and is often from someone the child knows. Teach your child to know all types of abuse. Find out how to report it to appropriate authorities. Also find out how to best help you child. All provinces have different laws. So know your rights and advocate for better ones. Unite with other parents of children with SMA, and adults with SMA for better supports (attendant, technological devices, home ventilation, education, ect). We have a long way to go

Many people with progressive disorders such as I who wish to live as independent lives and not merely have their physical needs met. This, however, needs to be a partnership with the individual, their families, their caregivers and the society in which they live. We want quality to our lives, and not just our medical and physical needs. We also want the government to recognize that we are equal citizens in our country and our province. This however is going to take a great deal of work from all of us especially considering current trends in government spending. I really hope that my in paper is able to help parents of children with SMA plan there future from a different perspective.