Adjusting for Change

Filed Under (Adam, Single Parenthood) by Estee on 30-01-2009

You’d think I’d be talking about the economy, and perhaps I am. I can’t think of any greater changes than facing an uncertain economy or future be it health, prosperity, or my new future as a single mom. But Adam seems to enjoy singing about my new status lately — picking up on Beyonce’s new song “I’m a Single Lady,” every single day. Today he just happened to sing the song after he put on this wig:

Now she says “if you want then you should have put a ring on it,” but I’d be happy with just the love. For those of you who do not know the song or couldn’t decipher from Adam’s singing (although I thought it was magnificent), here is Beyonce’s version:

Hope Springs Eternal

Filed Under (Single Parenthood) by Estee on 22-01-2009

In the cold, grayness of a bleak Canadian winter not to mention global climate, a new American President reminds us that hope springs eternal. There is something powerful in a single man who can move millions of people to hope again, and to act for themselves. But let’s not get too trite about hope.

In Mark Matousek’s book, When You’re Falling, Dive, which I’ve read this week, he reminds us that instead, “hope is a waifish thing stranded on a lonely cliff, barefoot, tempest torn, eyes concealed behind a blindfold as she reaches her empty hand out toward a harp with only one string.” (p. 73). He is of course is referring to Watt’s painting above. Her fingers strain “towards an instrument that offers her only chance of music, yet has only one string still intact, as likely to snap as it is to play.”

He compares this to life itself and we are the blindfolded members of society, reaching, straining into our next moments knowing that the string might snap in our face. “But if you don’t reach, you’re not really living,” he says.

Baruch Spinoza said hope is inspired by fear. For without fear we would have no hope and without hope, no fear. Spinoza was also not being too trite about hope. He implies that it is only fear that motivates it. Buddhists believe in the duplicity in our lives. It is the struggle and the joy earned, for without walking willingly through hell, we would not reach the other side. It all eludes to the craft of life, of living, really. For if we lost all hope, we would not be able to carry on, and if we did not accept the darkness, we would not know hope or joy or heaven, or whatever you want to call it. This is “not the naive hope that everything will be hunky-dory, exactly as life used to be, but the hope that assures us, when things seem darkest, that although it doesn’t look that way now, something else is also true.” It is also true of perspective. We have one and there is always another.

Often, you hear me write on this blog over and over and over again about autism acceptance and joy. More often, I read misinterpreted, glossy if not sickeningly-sweet definitions of what acceptance and joy and even hope means in autism or life itself that concerns me greatly. It concerns me because if expectations are unmet, many children face dangerous consequences, not to mention that parents can remain in an everlasting depression. Expectations are a staid way of existence. My father always told me not to expect anything in life. I really didn’t like this when he said it. I defied him. Until now. Forty-three years later, my father’s irritating wisdoms that I received as a teenager ring not only true, they give me peace as I live and learn.

Matousek says, “fixated hope is a problem,” meaning, a desire for a particular outcome in any aspect of life can leave one stuck. “It’s easy to become hope’s hostage,” he says, “to imprison ourselves in optimism, entrap ourselves through inflexible craving for a premeditated result. We risk spending our time consumed by longing, obsessed with all the things we don’t have and unhappy with what life has chosen to give us.” (p. 75).

Buddha believed that all things come to an end. Our children grow up, our families and friends will die, we may gain and lose our fortunes. The wheel keeps turning. As long as we believe things last, then suffering is inevitable. The Dalai Lama asks us to keep our hearts open in hell – at a time when we are suffering most and when compassion is more difficult. This art of living, this craft as it were, is like “turning poison into a boon.”

The more we remain flexible and become at “ease with uncertainty, ‘poise amidst shakiness,’ by learning to stay with the broken heart and rumbling stomach and achieving some detente with hopelessness, can we be truly happy,” says American born Buddhist master Pema Chodron. “In a world of hope and fear we always have to change what is. But when we allow ourselves to feel uncertainty, disappointment, shock, embarrassment, we discover a mind that is clear, unbiased and fresh.”

Life and autism and all the feelings and fears and hope that surround it all, is a contradiction. If we can accept this duplicity in all things, this double-ness which is our reality, “acceptance would trump hopelessness.”

Let me relay one more story from Matousek’s chapter where he talks about a teacher in Thailand named Achaan Chah. ”

In Thailand,” says Matousek, “people in this country use therapists or astrologers. One day a father from the town came to Achaan Chah’s monastery, extremely upset, to ask the master how he could possibly live with not being able to protect his children in such a violent world. How could this man, this father, hope to survive his kids’ tragedies, the thousand blows that life would deal them? Achaan Chah lifted a lovely crystal goblet from his side table and help it up to the sun.

“I like this glass,” the master said, delighting in the diamond light patterns shining through its thousand facets. “I find this glass very beautiful. When the sun shines through it, there are rainbows. When you test it, it gives a wonderful ring. But I know that this glass is already broken.”

The worried father did not understand.

“Each time I sip from this glass, I enjoy it,” the master continued. “And yet, when a strong wind tips it over or I knock this glass with my elbow and it shatters into a thousand pieces, I will say ‘Ah, so, it was already broken.”

Achaan Chah seemed to be suggesting to the father that were he to love his children in this way, each moment he spent with them would be so direct, and so precious, that there would be no room for regret, no necessity for hope.

And then there is the girl on the rock with the broken harp. I like Matousek’s thinking about her and hope as he wonders whether the girl would still want to play the harp with her blindfold off because she would no longer bother to reach seeing that the harp was already broken. “Or whether the girl would still want to play because playing itself is in her nature, knowing that one string can be enough, and if that last string breaks, she can always sing.”

I am writing, really, about two things. About a recent and personal loss and about autism because I have discovered that life is not that numb comfy place that I tried so hard to protect. Life is about constant change and crisis and comfort and then change again. The more we can roll with the punches and accept the hand we are dealt, be it our children or whatever happens to us in our lives, the more we may actually grow more content with it all.

Today, I feel like that girl on the rock. We can live each day and accept and sing, or we can worry and wonder if or when that one string will break. I can’t help but feel a new hope in general — much of it is self-generated — perhaps that is what has driven The Joy of Autism since 2005 — and this post ironically coincides with the recent appointment of a hopeful new President who seems to instill the same idea that we must all keep carrying on. My own personal story is not really about Adam or autism, which I have come to accept now with ease, but of becoming a single mother, not yet anchored, but still savoring each moment during a period that enables me to see things in a new way, that pains me, that makes me stronger to become again, perhaps create, and still no matter what… sing happy and sad songs as I drift along. It’s all okay.

Humpty Dumpty

Filed Under (Adam) by Estee on 17-01-2009

“Terror is fuel, wounding is power. Darkness carries the seeds of redemption. Authentic strength isn’t found in our armor but at the very pit of the wounds each of us manages to survive. As one widow put it…’Strength doesn’t mean being able to stand up to anything, but being able to crawl on your belly a long, long time before you can stand up again.’ Transformation is in our wiring,” says Mark Matousek in When You’re Falling, DIVE.

I have been thinking a lot about “crisis” lately. Cancer, divorce, disability, illness, death. Ironically, these are also the things that keep us from slumber and vibrantly alive. Aristotle called good luck the moment on the battlefield when the arrow hits the guy next to you. It’s a torn-in-half feelings, “partly shattering, partly sublime.” (Matousek). Most of us will have our share of luck and misfortune. We are meant to experience both as they are temporary, fleeting. “Luck” can come at a great price to either ourselves or to others, so there can never be an enduring sense of satisfaction over it.

This is a great way to define how the “acceptance movement” in autism can become kitsch and cliche and end up achieving nothing at all. People think that “all acceptance is good.” Acceptance combined with a sugary dose of naivete is not acceptance. Acceptance can look a LOT like denial. I liked Dr. Rachel Ramen’s thoughts in this regard (a physician quoted in Matousek’s book who lived with a “painful physical condition for fifty years.”):

“…’optimism is not required for healing’ ….how liberating is that for those who’ve scrambled to keep their own smiley-face masks in place when what they needed to do was scream?”

“In a dark time, the eye begins to see,” poet Theodore Roethke reminded us. With our illusions of safety exploded, out side the bounds of ‘normal’ life…new abilities indeed dawn in a person; values, intuitions, skills, perspectives that might seem unnatural — even perverse — to those who’ve led more sheltered lives.” (p. 11. Matousek).

Hmmm… I believe I was name-called quite a bit BEFORE the terms “joy and autism” were used by others. Over time, with people who make he effort to come to know Adam and I along our journey, know that there are many struggles that enable us to find the joy in life.

In a neighbourhood I live in which is blanded-down by illusions of security and “normalcy”, most of us are never open enough to feel the pain to experience, on voit le soleil. No matter if you’ve been hit by some kind of crisis, we are suppose to absorb the wounds so that we can live brightly.

Joy is only given to those worthy of their “sufferings.” For many of us who have become unmoored, do not be afraid to suffer in order to live.

Time for a Real Change: Disability Groups Send Recommendations to Obama

Filed Under (Activism) by Estee on 16-01-2009

ASAN, The Autistic Self Advocacy Network is involved in helping make changes. Read the letter below and become involved. Disability policy around the world effects us all:

Disability Groups Send Recommendations to Obama

Dear President-elect Obama,

Congratulations on capturing the hearts, minds, and hopes of our nation! As grassroots, community-based, consumer-controlled disability organizations, which collectively represent over 50 million Americans with the full spectrum of disabilities, we look forward to working with you and your administration to make cost-effective policy changes to enhance the lives of and restore the civil liberties Americans with disabilities.

Attached you will find nine summaries of the top policy issues facing Americans with disabilities. Taking action on your commitment and these policy measures will not only benefit citizens with disabilities, our nation’s wounded warriors, and the ever-growing aging population, it will benefit all Americans and save our government millions of dollars as individuals with disabilities become full participants in society.

They include:

· Employment: Reversing the persistently high percentages of people with disabilities who are not working but are ready, willing and able to work;

· Education: Increasing access and opportunities for physical activity, and improving quality;

· Health Care: Improving access and decreasing disparities and inequities;

· Home and Community-based Services (HCBS): Promoting effective community-based services as alternatives to costly nursing homes and other institutions and increase the FMAP to states;

· Disability Research: Promoting a quality of life and participation-based research agenda;

· Civil Rights: Reinvigorating civil rights enforcement, extending access requirements to new technologies, and continuing to restore protections stripped away by hostile courts;

· Human Rights: Protecting human rights of individuals with disabilities at home and abroad;

· Emergency Preparedness, Response and Recovery Needs: Planning, coordinating, and providing resources to support people with disabilities before, during, and after a crisis; and

· Genetic Science and Technology: Promoting ethical use of new technologies.

Like you, we stand and sit on the shoulders of so many who have come before us. As our nation approaches the 20th anniversary of the Americans with Disabilities Act in 2010, we embrace the disability rights principle, “Nothing About Us, Without Us.” For too long others claimed the need to speak for us, but no other group – professionals or relatives – speak for us.

Additionally, we urge you to embrace the fundamental principles for sustainable change, which are essential elements to building healthy, resilient, empowered communities. As you move forward with deliberate speed and consideration, we urge your administration to:

· Provide oversight of federal agency public policy, regulatory, and enforcement actions, and collaborate with consumer and community-based disability organizations as partners to better serve the ever-expanding population of more than 50 million Americans with disabilities;

· Hire qualified professionals with disabilities, who have expertise in policy areas, throughout the administration, including a Special Assistant to the President on Disability Policy;

· Include individuals with disabilities in policy formation in all areas addressed by the administration, and integrate representatives of our community on all advisory boards of all major agencies;

· Provide services that serve people with disabilities across the life span, from cradle to grave, and all those with increased needs for health care, health promotion, and long-term services and community-based supports;

· Incorporate consumer-directed services and include consumers in policy development;

· Embrace the disability experience as part of culturally competent policy and diversity at all levels of planning, policy formulation, implementation, and evaluation; and

· Focus on “universal design” as a cost-effective innovative way to enhance the quality of life and level of participation of all Americans in community life and incorporate it into infrastructure changes in the economic stimulus package so we upgrade the infrastructure for all to use;

Thank you for your support of the need for the federal government to be “diligent about making sure the states enforce the rights affirmed by the Olmstead decision.” Enabling people with disabilities to live independently in their own homes and communities, rather than being forced into costly Medicaid-funded nursing homes and other institutions will ensure civil liberties, enhance the quality of life and full participation of all Americans by creating stronger, sustainable communities of inclusion and acceptance to honor the 10th Anniversary of the Olmstead decision.

As a community of individuals with disabilities, we ask for nothing more than what other Americans expect and already have. We seek inclusion. We seek a voice for the disability rights message in the change you create. As you create more jobs for Americans, include jobs for Americans with disabilities. As you improve education for America’s students, include students with disabilities. As you improve the healthcare system, include the healthcare needs of individuals with disabilities. As you restore civil rights to Americans, include the civil rights of individuals with disabilities. To paraphrase your now immortal words, – We are not a nation of disabled and non-disabled Americans. We are the United States of America.

We stand ready to work with you and look forward to an opportunity to discuss our priorities with you personally in the coming months.


American Association of People with Disabilities (AAPD)

Access Living

American Disabled for Attendant Programs Today (ADAPT)

Autistic Self Advocacy Network

Boston Center for Independent Living (BCIL)

California Foundation for Independent Living Centers (CFILC)

Disability Rights Education and Defense Fund (DREDF)

Generations Ahead

Little People of America

Metro-West Center for Independent Living (MWCIL)

National Association of the Deaf (NAD)

National Coalition for Disability Rights (NCDR)

National Coalition of Mental Health Consumer Survivor Organizations

National Council on Independent Living (NCIL)

National Empowerment Center

National Federation of the Blind (NFB)

Self Advocates Becoming Empowered (SABE)

Special Olympics

Texas State Independent Living Council (TX SILC)

World Institute on Disability (WID)

For Policy Recommendations on each policy visit the websites of the organizations listed above.

—Ari Ne’eman
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036


Filed Under (Uncategorized) by Estee on 16-01-2009

I just received some feedback about my new website and apparently it is difficult to sign in and make comments. If you do have any feedback, please let me know and we’ll see if we can make it easier.


Filed Under (Uncategorized) by Estee on 15-01-2009

From Ad Busters:


“The future is always difficult to quantify, but tomorrow comes with at least one guarantee: it will be lonely. The number of single-person households across the globe is growing at an alarming rate. Struggling with feelings of lonliness and isolation, more and more people are turning to online dating and social networking sites to try and muster up some companionship. Meanwhile, divorce rates are at an all-time high.”

Well heck, that explains three posts in one day. Or, if we’re really smart, we can recognize a great economic opportunity when we see it (seeing as how all of you biz guys are freaking out, why don’t you wake up a little bit). Social entrepreneurship and networking online is KING. I’m not condoning those divorce rates. It might be interesting to examine any correlation between online connecting, the Internet and divorce rates, if any. It’s interesting as connection is at an all time Internet high, we are disconnecting from each other moreso in our personal lives. In my neighbourhood anyway, neighbours hardly come out and say hello to each other (except for my one favourite neighbour). No, instead, we connect through Facebook when we are only meters away from each other!

Yet, in the disability community knew it for a long time — the blessing of at least connecting on the Internet. I mean, as the world is in “crisis” we see many more sprouting of individuals and organizations trying to make this world a truly better place. Thank goodness. As a writer and an only child, I’ve had little problem with being alone, but connecting is a necessity. I hardly think we are alone. I see thousands of you connecting on Facebook at at The Autism Acceptance Project. While it may just be you and I in front of our screens right now, we are at least together in our alone-ness. All of these social connection tools are a way to connect with each other in an otherwise cruel and dangerous world. How do we get out from behind our computer screens and connect in person?

We do it often the autism community and many other communities with a cause do it too. We write, we are active and we meet up at retreats and conferences. Just check out Autism Hub, all the autism activist groups, the forums, the chat rooms. I think the power of the Internet to connect us in our causes and interests has been a blessing in this confused world at the moment. It will be okay. We will all find our way.

Ode to the power of WWW.

Now go say hi to your neighbour.

When You’re Not Sure, Try It On Anyway

Filed Under (Development) by Estee on 15-01-2009

Adam has been hanging out with friends. He has three friends now that he hangs out with on weekends. It’s simply delightful for me to watch him take the hands of his patient little friends (shows that kids CAN be patient, loving and kind), and lead them around to what he wants to play because he can’t always say it. We didn’t use RDI or facilitated play groups, by the way, to achieve this skill. It doesn’t mean we didn’t try those things long ago. We did. We just didn’t keep those “methods” up. Adam has learned by being engaged with people while being respected when he needs a break from them. He observes.

I was thinking about Adam and finding what he loves. We tried a few things over the years — movies — those were difficult to sit through. I can name three movies he did sit through from start to finish:

Charlotte’s Web
Happy Feet

Movies are harder than believe it or not, theatre. Adam will sit glued to the theatre. So much so, I’ve been able to take him to major productions. He loves to enact too. It makes me think it’s time for a drama class. He watches videos and he tries so hard to say (he has verbal difficulty) what the characters say. He tries to imitate what they do (he has had motor planning difficulty which is improving significantly). Adam tries so hard and this is his way. So it puzzles me when parents of autistic children take away videos because they believe their children are “stimming” over them. When I watch Adam, the provide some repetitive comfort from an over-stimulating day AND he is desperately trying to learn.

As I think about what autistic adults have told me — using puppets (Adam loves puppets) or “Pretending to be Normal,” it reminds me of how we all have to try personas on to find our own. It takes so much effort and I respect Adam’s. Drama is a really healthy way to explore feelings and one’s SELF. It’s what I believe is a safe haven for Adam to explore himself and probably the most healthy and accepting way of developing one’s Self overall.

As we’ve grown into adults, don’t we all have stories of pretending to be something that we are not? By trying certain things that may not feel natural at first, we come back to being who we are meant to be.

Simply Cryogenic

Filed Under (Uncategorized) by Estee on 15-01-2009

If you read my post on How’s the Weather a couple of weeks ago about small talk, well, I have to admit, I’m obsessed with weather. I get really excited at oncoming storms, weather warnings and today, I can report that Canada is in a deep freeze. Our warnings today across most of Canada are wind-chill warnings up to minus fifty! Brrrr.

Toronto in a Deep Freeze

Toronto in a Deep Freeze

Here’s a picture of Toronto from Adam’s grandfather. It shows how life can be positively cryogenic. I’m certainly frozen as I huddle in the home my husband and I built; from where Adam and I will soon move away. It reminds me of disability history and cryogenics — how we are really frozen in time (I’m writing a paper on that, and will post it).

Yet, time and life keeps moving at the same time when things don’t change much at all…what an irony.

Please don’t forget about my single mother of disabled children study and thanks to those of you who have responded. I guess it’s cold here in Canada, but things are still moving along.

“Moving on, is a simple thing, what it leaves behind is hard.” –Dave Mustaine

Here’s a video and song that warmed my heart on a freezing cold day:


Filed Under (Adam) by Estee on 14-01-2009

Adam uses certain words frequently that can be rather mysterious for the rest of us to read into. For instance, he uses the word “red” a lot. I’ve considered the words he uses seem to be like emotions he reads, or feelings. Red seems to mean the negative emotions of others. Adam feels a lot, but I don’t think he’s given much credit for it. If it weren’t for me, this blog and autistic people, and perhaps the patience of a special few, Adam would be written off as nonsensical. Yet, much of his conversation is just as sensory as he is, perhaps we could simplify it and say on a kind of sensory overdrive, and as vibrant as a poet’s use of language. So I try to listen and learn.

There are a lot of things going on in our lives right now. Today, Adam and I found a new home to live in. I will spend the next few months preparing the house, doing him justice by giving him plenty of transition time. When we moved into our current home, I would bring Adam over for visits every week. We would walk over, check out how the building was coming along, and play ball on unfinished floors.

I plan on doing the same again and it is good advice for any autistic child. First take short visits, then extend them. When Adam is thrown into a new environment, he doesn’t really get used to it until the third day. That seems to be the magic number. It takes him that long to stake out the new joint, figure out its configurations. In the meantime, new places can be very upsetting.

As for new things and changes, he is changing too. I wonder how he will express these days of his life (he is to an extent which is private and I will not share). As for the fun stuff, his new teeth are exploding into his tiny mouth. He sort of stretches his jaw, and to many “experts,” they would just look at him as if he were stimming, but it’s not a “stim;” it’s a necessity in dealing with the feeling of all those teeth breaking through his gums.

Adam writes a lot more on his own now — another big change in him this year — I’d say most of the time at home and all of the time at school. Doing school work is easier to type independently than conversations where he might become distracted and needs my reminding be it a tap on the shoulder or a verbal reminder to keep going. I imagine this to be because doing school work is more concrete than open-ended conversation. But this is what he said recently about his teeth:

Me: I can see your front teeth coming in.

Adam: tooth coming in.

Me: How does it feel?

Adam: it feels
it feels open — [now think of it, he has no teeth there at the moment]

Me: Can you feel a big tooth coming?

Adam: yes it feels jar

Me: To mommy, a jar means a container. What does jar mean to you? [I find asking him to define is sometimes easy and often difficult]

Adam: jar milk

Me: [trying to get him back on track] You say your tooth feels like a jar. That is difficult for me to understand how it feels. Jar is not a feeling.

Adam: jar is a feeling yes

So as I said, maybe every word and every thing IS a feeling in an autistic child who many researchers and media define as having no feelings at all. In a life that is completely jarring, Adam is doing great.

Autism’s “Distractors”

Filed Under (Activism) by Estee on 13-01-2009

I think this video by Christschool hits many nails on the head. These distractors raised their nasty heads over the past couple of weeks when Jett Travolta passed away, accusing the parents of not “curing” or treating his alleged autism. They will use innocent people and hold them up as the beacons of society’s burden. They are often referred to as today’s autism “advocates.” But beware: “advoacy” has its imposters:

You People Amaze Me

Filed Under (Uncategorized) by Estee on 13-01-2009

DoC of Autism Street. made me cry this morning…and okay, blush too….

I can’t thank you enough for your kind words, James. Yesterday, I got a little cheeky on as Kathleen wrote a compelling title to her exceptional post “Who Wants To Be A Millionaire.” Of course, Kathleen’s content is NEVER cheeky (well, not at least without a ton of intelligent research behind it). I’ve met Kathleen — she is sweet, smart, thorough and I trust her judgement. Kathleen cares about people. I can attest to that.

James, you shocked me with your post this morning over that silly comment of mine. But thank you. I will ditto the plug of Jame’s blog here. I’ve heard James speak in San Diego, and let me tell you, he is of professional speaker calibre (I really think you have another career there, James).

Thank you to so many of you who have reached out to me. You really don’t know what it means as I sit in my Toronto home office with gray skies and uncertainty and try to make the best out of it all.


It’s Not Your Paperwork; It’s Your Future

Filed Under (Disability Finances/Benefits) by Estee on 12-01-2009

Do you have a financial plan for you and your child? I’ve received a few responses to the RDSP post I made last week and some planners wish to give some information. I hope to give everyone a fair say as I will be doing interviews for publication of financial planners on how to plan for yourself and your autistic child’s future. Many thanks to David from RBC for writing this guest piece for this blog. If you have any questions, you can contact David:

David Velikonja, MBA
Investment Advisor
RBC Dominion Securities
(905) 895-2999

A written financial plan is a tool that will help you reach your personal financial goals more effectively.

Here is a some info on some things single moms and dads of special needs kids should consider. This is a start.

– Henson Trusts
– Tax Planning for Persons with Disabilities
– Financial Planning Worksheet
– list of two estate planning lawyers that have worked with Henson Trusts

I can help you if you provide the necessary information. It’s essential that you be as accurate as possible because your answers form the starting point for your plan. All information is confidential.

Don’t think of this as “paperwork”. It’s about your future. By filling out this worksheet completely, you’ll give me what I need to make you feel secure and comfortable about your understanding of your investment, estate planning and insurance needs.

Whether you’re planning for retirement, your children’s education, trying to reduce your taxes, or just looking for financial clarity, the process starts here because it will help you answer three key questions:

• Where am I now?
• Where do I want to be?
• How do I get there?

Please be as thorough as possible. Don’t omit any information – it’s all important for helping you reach your personal financial goals. Fill the sheet for both you and your spouse.

David has provided a sheet (which I’m sorry did not translate as a proper spreadsheet herein) that he would ask his clients to get them started. Maybe some of you might find this helpful or you can contact David yourself:


Marital status
• Single
• Couple


Last name
First name
S.I.N. #
Date of birth (m/d/y)
Work phone #
Fax #
Home phone #

Address _________________________________________________
City_______________________ Postal Code____________________


Planned retirement age • 65, or
• age ____ • 65, or
• age____
Last year’s T4 income (pre-tax) $
Principal preservation
(How much do you want left to your estate, if anything, in today’s $’s?) $

For the next two sections on investments you can fill out the boxes or just provide your investment statements:

Registered investments
(RRSP, RESP, defined contribution pension plans)

(You or spouse) Amount Description Asset Type
(Equities, bonds, GICs) Locked-in
(Yes or no)

Annual RRSP savings for this year you $________ Spouse $_______

Non-Registered investments

Owner Amount Description Asset
Type Realized gain Book
Value Market

Annual non-RRSP savings for this year you $_____ Spouse $______

Government benefits

Do you expect to receive: You Spouse
• No • Yes
• No
Start age _______ Start age _______
Old Age Security • Yes
• No • Yes
• No

Other significant expenses
Any significant cash outlays, like a cottage, child’s education, etc. Enter amounts in today’s dollars and I’ll calculate the inflation amount. Start age and end age refer to expenses in the future that might span a few years. For example, a 4-year college education for a child.

Owner Description Annual amount Start age End age

Other income sources
Other sources like sale of home, inheritance, rental income, etc. In today’s dollars.

Owner Description Annual amount Start age End age

Pension benefits
List your defined benefit pension(s) here if you have any. Once again, if this gets complicated just provide your pension benefit statements and I’ll work from them.

Owner Employer name Annual amount Start age End age Dollar terms (today or future) Growth Bridge benefit Survivor benefit
$ T F % $
$ T F % $
$ T F % $
$ T F % $
$ T F % $
$ T F % $

Life insurance
Life insurance serves two purposes. First, it can replace the income of a spouse in the event of death. Second, it can offset estate taxes, which lets you transfer as much of your property as possible to your heirs – instead of the government. Essentially insurance keeps you on track for your financial plan. Consider what your family would face if you or your spouse died sudden: funeral expenses, your mortgage and day-to-day living expenses would all have to be covered.

Immediate expenses (there are other more complex calculations we can do, but for now let’s capture the basic information)

Emergency funds
Funeral ($5,000 plus)
Taxes on deemed or actual disposition of assets
Business liquidation value

Life insurance policies
Once again, your insurance policies or statements might save you a bit of time.

Owner Description Amount Start age End age Growth
$ %
$ %
$ %
$ %
$ %

Balance sheet

This section is important to give us an overview of where you are today and what kind of flexibility we have in achieving your financial plan.

Current assets
Cash & short-term investments
Other current assets

Long-term financial assets
RRSP investments
Non-RRSP investments
Life insurance cash value
Long-term financial assets

Real estate
Principal residence
Other real estate

Other non-financial assets

Total current liabilities
Income taxes payable
Credit card balance(s)
Line(s) of credit
Other current liabilities

Long-term liabilities
Car loan(s)
Investment loan(s)
Other long-term liabilities

This will be the first in a series of posts about financial planning for families of and for disabled persons in Canada.

What’s the World News Got To Do With It?

Filed Under (Uncategorized) by Estee on 11-01-2009

Should this blog only discuss autism? I will tell you, I can’t just focus on that. Soon, the old Joy of Autism Blog (down-loadable also by clicking on the PDF file in the right margin) will be published and you will be able to read eight hundred pages about our world as it relates to our lives with autism. Some posts are very specific; others meander for your consideration.

I promise, however, to complete three projects this year specifically regarding that are specific to disability and autism:

1. I will be completing a paper on single parents of disabled children as it relates to stress, coping, management and quality of life;
2. I will be writing a piece on investment and financial planning for Canadian families with and for disabled people;
3. I will continue the Inclusion Initiative with TAAProject (which in and of itself entails a few projects)
4. I will be enhancing Adam’s curriculum as usual (that’s the major part of my daily life).

In addition to my studies at the Critical Disability Studies Department at York U, living and planning for Adam’s life and writing about all that, and now with a specific interest on managing life and our future as a single-parent family, I have this urgent need to muse about our world, perhaps oh so generally that it makes some of you crazy. But hey, everything is connected.

As I read The National Post this morning, I remind myself why it’s good not to read the papers everyday, but also naïve not to. Here in Toronto, we have Palestinians protesting on Bloor Street the crisis in Gaza — police on horses are eerily positioned way too close to home. In the comments section of the post Mark Silverberg from Toronto eloquently writes on how Israel is “losing the PR war” — referencing an article by Jeet Heer, Silverberg writes, “According to figures on the Israel Ministry of Foreign Affairs Website, 1,176 Israelis have been murdered in terrorist and missile attacks since 2000, including 140 suicide bombings killing 543 individuals – many of these attacks perpetrated by Hamas. Quite impressive achievements by a group Mr. Heer refers to as ‘a raggedy half-starved guerrilla force whose homemade missiles are usually as dangerous as firecrackers.’” Silverberg sure has a point here. The media wars influence our thinking in grossly unfair ways. I think of a quote by Golda Meir herself that sends chills up my spine when I think of the media wars on how they influence perception and how all life is truly precious. She said, “We can forgive the Arabs for killing our children. We cannot forgive them for forcing us to kill their children. We will only have peace with the Arabs when the love their children more than they hate us.” I hate reinforcing monolithic ideas — that all Arabs don’t love their children — I would not let that stereotype go on for the sake of my Arab friends! But there is a wave of terrorism that uses children and families as human shields. That’s the kind of use that we have to focus on — not stereotyping an entire people, but focusing on the groups that simply do not accept the right for all of us to live in peace. Meir’s quote may rub some of you the wrong way, but it also rings of tremendous conscience and responsibility in a complicated situation.

As I’ve said numerous times in my presentations, there is enough death-talk in this world — even among many autism “advocates.” It’s time for more life talk.

Let me go on about what I see in the paper: an article on epigenics on the front page. Sounds nice that we might in utero be able to detect if human beings will develop cancer later in life (the article carefully leaves out people with disabilities, but of course, read between the lines, my friends). I think of my ovarian cancer this year that I caught, thankfully, early. So, if it was detected in my mother’s womb, might my life have also been prevented?? Are we going to cure it in utero? “It’s about choice,” says the article. Indeed, I’m an advocate for choice. Yet, there is a point when social pressure is so strong when choice ceases to be a choice.

Let’s go to another page. This one really effects me. You see, when my divorce becomes final, I had this idea in my head that I would travel to India. It’s the trip of a lifetime for me. Also front page that continues on the back: all the missing Canadians. Never mind the recent terrorist attacks in Mumbai this past year. That really put a damper on my willingness to travel. But if that didn’t quite do it, this article did called, Searching for Ani, and Anatomy of the Hunt…. “Every year hundreds of Canadians go missing in other parts of the world. Last year alone, Foreign Affairs opened 413 missing persons files….”

So much for my desire to go to India with a sweet wonderful autistic son at home who really needs his mother. So you don’t think the news has much to do about autism in what should be a strictly autism blog? I beg to differ. I don’t go out much since my separation. I am careful about who will be in our lives. I am careful about everything and yet, I am able to connect with thousands of you (2000 to be exact) through The Autism Acceptance Project alone – never mind blogs and Facebook. The world is rough out there, and so here we are trying to connect with each other on the Web. In this world that seems to be falling apart at the moment, we must never give up connecting. The enormously wonderful and potentially dangerous power of the web! We have a choice on how to manage this world. We have a choice in the way we report the news and the words we use. We can also keep speaking up against stereotypes if we are to move forward.

I reiterate the words of recently deceased Canadian writer June Callwood on page A10 of The National Post, where the winning design for a park in her honour is proposed to be built between Fort York and the Waterfront. “Submitted by the firm gh3, it literally articulates a quote the author and journalist gave in her last interview before her death. A voice wave of ‘I believe in kindness,’ will be translated into a ‘sinewy path that runs north and south through the clearings in an urban forest that will be planted with native Canadian tress….”

So you don’t think there’s any connection between autism, the world, the media, and the way we think about things and the world we forge for our children? It’s ALL I can think about when I read the paper: how do we think about things, each other, and where are we headed?

Thank goodness all that bad news was punctuated with the most important quote of all:

I believe in kindness.

I hope the sentiment never gets lost in the propaganda.

Registered Disability Savings Plan

Filed Under (Disability Finances/Benefits) by Estee on 08-01-2009

For those of you investigating like me, ways and means to save for our children’s future, in may be worthwhile looking into the newly instigated Canadian RDSP. In addition to the following press release, visit The Bank of Montreal’s website for more information:

New RDSP enables families to save tax-free for future of disabled Canadians

By The Canadian Press

TORONTO – Families of people with disabilities will be able to set up tax-free savings plans under a long-awaited measure enacted by the federal government.

The registered disability savings plan – RDSP – “is about helping bring more independence to families of persons with disabilities, who are facing challenges, particularly financial challenges, when planning their future,” federal Human Resources Minister Diane Finley said in presenting the program Tuesday.

The RDSP had been proposed in the Conservative government’s March 2007 budget but became effective only this month.

“You know how government works – here we are the end of 2008,” joked Finance Minister Jim Flaherty, joining Finley for the announcement in the lobby of a children’s rehabilitation centre.

The government estimates 280,000 Canadians are eligible to open RDSPs, allowing parents and others to set aside funds for a child with a severe disability.

Ottawa will provide matching grants of up to $3,500 per year, plus a $1,000 bond each year for families with incomes under $37,885. Each RDSP has a lifetime contribution limit of $200,000 from the family and $70,000 from the government.

The program is expected to cost Ottawa about $200 million a year in contributions and forgone taxes.

Flaherty said the deadline for opening an RDSP and making contributions for 2008 has been extended to March 2.

RDSPs are intended for individuals who qualify for the disability tax credit, their families and others. Unlike a registered retirement savings plan, contributions are not deductible. But the money grows grow tax-free and will not be included in taxable income when withdrawn.

Income paid out of RDSPs also will not affect federal income-tested benefits, such as Old Age Security, the Canada child tax benefit and the goods and services tax credit.

The federal government has negotiated with the provinces and territories, and RDSP income and assets will be excluded from benefit clawbacks in Newfoundland and Labrador, Ontario, Manitoba, Saskatchewan, Alberta, British Columbia and the Yukon.

Quebec, New Brunswick and Prince Edward Island are exempting RDSP payments from income support calculations up to set limits. In the Northwest Territories, a limited exemption will be allowed.

“We are leading the world in this initiative, and I expect it will be copied in many places around the world,” Flaherty said, explaining that the program’s lengthy lead time arose from the complexity of progressive social and tax policy, including getting other governments onside in not taxing or clawing back the program’s income.

Bank of Montreal, the first major financial institution offering RDSPs, said it received about 600 inquiries on the opening day of the program.

Participants Required For Interview

Filed Under (Single Parenthood) by Estee on 08-01-2009

Are you a single mother of a disabled child? If so, I want to talk to you as I am doing a study of single mothers of disabled children. Please contact me by email if are interested in this study at

Estee and Adam

Estee and Adam

“We have done better at playing according to the men’s rules than changing them to our own.” — Susan Estrich, the first female editor of the Havard Law Review.


About Me


I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (, and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.