Working Together - Parent Perspective

When a special needs child becomes a student at school, the role of parent expands. With many different people and levels in the education system, learning to work together benefits the student. I've had the privilege of facilitating parent panels which gave educators the opportunity to hear directly from parents their experiences of navigating the system. The following is the handout I created for participants.

We both play a valuable and distinct role in my child's life
  • requires effective communication system
  • share what is working
School is only a part of my child's day
  • extra disability supports
  • greater need for down time
  • regular kids activities
Life continues after graduation
  • parental hopes and dreams undergo continual readjustment
  • pacing for the long term
  • skills for life
  • maximize abilities by strengthening strengths
To receive supports, there must be demonstrated need
  • it is hard to focus only on my child's special needs
  • technical language can be confusing
  • my child behaves differently in different situations
Disability can be isolating
  • lack of supports for parents
  • hard to see my child left out
You are an important person in my child's life
  • 50 significant caregivers by age 18
  • Tremendous responsibility and trust
  • Potential to create a strong link in web of supports
Thank you for taking the time to listen to us as parents.

Click here to download a PDF version of this handout.

What else would you add to create a strong learning team?

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Unexpected Community

Lars and the Real Girl
Lars and the Real Girl (Image via
Watching a movie about a life sized doll ordered off the Internet was not where I expected to discover community. Yet in Lars and the Real Girl, community plays a central role as each character decides what to do about Bianca – the doll that Lars believes is real.Can Bianca come in for dinner? Lars' brother doesn't want to be associated with crazy. His sister-in-law, Karin, seems a bit more open. She asks what they can do to help, but recoils at the thought of letting Bianca borrow her clothes. It is a very personal request. Here is where Karin draws the line – Bianca doesn't have the same style. But Lars says Bianca doesn't care about stuff like that.The movie focuses on the community including Bianca so Lars can feel included, too. The community includes her for Lars. Lars, too, faces the challenge of valuing his doll. I think the most powerful moment is when Lars has to decide what he will do about Bianca. Will Lars accept that Bianca is part of the community, not owned by him?
Bianca had value because the people chose to give it to her - by giving her a job, volunteer positions and a social life. Bianca did nothing. However, I believe she gave the greatest gift in the movie. Bianca gave the community an opportunity to decide about Lars. To view him as other, or part of common humanity. To change to include him or reject him for being different. Choosing to give Bianca value created a place for Lars to belong. The choice of each individual affected the community as a whole.
Lars and the Real Girl demonstrates how what we value shapes our communities. Disability challenges others who find their value in their abilities. Finding identity in a relationship makes it too valuable, something to cling to for life until there is no life left. Finding value in what we own makes tackling poverty more difficult, even if it is simply lending clothes to a doll.

Where have you been valued by and in community?
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Autism: Lacking a Special Interest

I don't have a special interest. I get a tad disappointed when people learn I have Autism Spectrum Disorder because the follow up response is often, "Do you have a special talent or interest?" I reply with no. While my IQ is at or above the 99th percentile, I don't have savant skills. Brilliant, but not necessarily genius. With so many interests, none get elevated to the level of positive obsession.
While sharing this frustration with my psychiatrist this week, she used the phrase "globally gifted" to describe me. I quipped, "No wonder I've been lacking career direction." I didn't know how to pick what I was good at. After high school I enrolled as an Arts major with Calculus as my option - I knew it would be an easy A. Not the usual academic combination.
However, because of my global giftedness/Autism combination, I ask questions some perceive as out of context. Cutting edge leaders and policy makers value innovation, creativity and dedication to working out contextual strategies. Increasingly I'm invited to participate in these type of discussions which excites me. And feels risky. My social limitations have the power to emotionally erase the positive contributions I bring to brainstorming and networking.  With a social faux pas I could lose credibility within the group and spiral downward in my mind if I allow myself to replay the incident.
I'm choosing to be thankful for the combination of characteristics which make me who I am. Without the Autism, networking could easily become schmoozing. Without global giftedness, one or two intense passions could easily limit my life experiences. Thankfulness creates the space to live my life to the fullest.

What benefits have you discovered in living with Autism, either in yourself or someone you know?

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No: A Vocabulary Makeover

A parent requests the disability supports a family member needs. A person on fixed income applies for increased rent subsidy to match increased expenses. Access to mental health services is required. "No" is a word heard repeatedly by people accessing social assistance.
As I waited in line to pick up a cheque that could not be mailed because of the current postal strike/lock out in Canada, I heard many forms of "no". I believe it is time for a vocabulary makeover:
  1. That's not our mandate: This response tells me the service provider is system oriented, not client oriented. The potential client is dehumanized as their needs are externalized into a checklist. It is emotionally easier to say no to a piece of paper than a person. For the applicant, it is challenging to not take the rejection personally.
  2. Your friend gave you the wrong information: This typifies the mistrust service providers can develop towards their potential clients. It also undermines the social support of friends - especially when friends can be as hard to find as disability resources.
  3. Not matching the language ability of the person requesting services: Sometimes technical jargon creates barriers. An individual striving to communicate in a language not his own was met with the words transaction, timeline and review. Already overwhelmed, he left with no assistance and greater confusion.
  4. That's all we can do: Defensiveness. Again the focus is on the agency and not the client. There seems to be an assumption the person in need should be penitent for having needs. The tone of the reply treated the request as an imposition.
  5. I can't give you that information: This hardens the us/them mindset. Another reminder of who lives on which side of the haves and have-nots.
Now take a deep breath and read my proposed makeover for each situation above.
  1. I can see your needs are significant. Let's see where we can work together: Validated needs and teamwork add dignity. Service agencies participating in community networking produce referrals to other services.
  2. I'm thankful you are connected to supportive people. The client came, which can be the biggest hurdle. The service provider can clarify any misinformation without pointing fingers.
  3. Provide written information in simple vocabulary: As a person with Autism Spectrum Disorder, being given a flowchart of the application process adds time for me to digest the instructions. Contact information for further assistance for each step provides hope during wait periods and increases the likelihood that the application will be completed correctly the first time around.
  4. I know what we can provide isn't enough to meet your needs. I wish we could offer you more: Needs are complex. I don't know of an agency which meets every need. Yet each strand added increases the strength of fabric.
  5. I value the confidentiality of the personal information our system requires you to share. It is hard to tell a stranger personal history and financial information to qualify for programming. It is reassuring to experience confidentiality affirmed.
I understand that budgets are stretched and wait lists are long. Sometimes "No" is the only response that fits a service agency's policy. However, I believe "No" can be said differently - in a way that lowers institutional defensiveness and restores dignity to those with the courage to ask for help.
What other "No" makeovers would you add?

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Four Reasons for Five More Years

June 2006. Back on the psych ward for the sixth time. Medications conflicting. Over 200 pounds. Not knowing how to continue living, but not wanting life to end.
Dear 34 year old me,
Thank you for holding on to Life. I couldn't write to you otherwise. Please read carefully. The state you are in now does not reflect who you really are.
  1. Loved: Through losing those you most deeply love, you will discover that your identity is secure. The people who return to your life in addition to the new friends and connections - each one will become a gift to love. You will no longer snatch what love you can from others because your heart has more than enough love to give.
  2. Accepted: The severe rejection you face will intensify. Eventually even the system will not want you. When you receive your diagnosis of Autism Spectrum Disorder, you will begin to accept yourself. Yet even that acceptance will not be enough. You will trade rejection for acceptance from the one who will never spurn you.
  3. Valuable: You will never believe this! (I guess you will in five years) Daily you will receive invitations to share your journey and thank yous from those who describe you as inspiring, raw, encouraging, genuine. The accolades will come. Please do not choose to see your accomplishments as your source of value. You are equally valuable right now. I think deep down you know that already. That is why you want to live.
  4. Secure: What are you depending on most? Your house is paid off. You belong in a family. Your keen intelligence confounds the nurses caring for you. I'm going to let you discover what happens. Without the journey ahead, you would feel lost in your current location. When your circumstances and feelings squeeze out your dreams like juice from an orange, what remains is enough - everything else is bonus.
June 2011.  Equipping individuals with Autism Spectrum Disorder and those who support them. 85 pounds lighter and healthy. Enjoying the challenges of raising my three children, two who also live with Autism Spectrum Disorder. Participating in policy discussions  - invited because of my experiences. Living more in step with Life each day.
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Born Blue

Twelve years ago today I heard the most amazing sound - my son's cry. After waiting longer than I can hold my breath, he took his first one. And let out a scream that lasted most of his first year and much of his second, third and fourth year. He punctuated the next few years with bursts of screaming, but his language abilities have held him up under all but the most trying times. Now he will scribble a scream, or write very large.  For which my ears are thankful.

But his first scream? That was beautiful.
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