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Helping parents survive and thrive the trials and tribulations of their disabled child.

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    As a parent of an adult daughter with a mild intellectual disability (an oxymoron because there is nothing mild about her situation) I have ridden the roller coaster of emotions. It is often exhausting, stressful and yet I have found it to be a profound learning experience of Life. I am however, also seeking peace. I know that I am not alone in my feelings. As parents we need to connect to share information, gleen ideas, group together to form mutually beneficial programs and be each other’s anchor so that we can provide meaningful lives for our children, the rest of of our family and our all important self.
    I have just completed some social media marketing courses so that I can learn to blog about these things and make my contribution by trying to help parents achieve these goals. I need to know your concerns, how you handle things, what kind of supports you have, what would be beneficial, how can community services reach out to you. Anything and everything that you can offer or share so that we make our lives more peaceful and productive.


    Great to see you here Heather! I’m sure that your post will make sense to so many other families and there’s lots to talk about for sure!! Connecting and talking with others can be a great sense of support and empowerment!


    Hi Heather! I work with Laura. You may also check out the community participation activities conversation under Community Supports and Activities as I’m looking for feedback from families.


    I know Heather wouldn’t mind me sharing the article below…unfortunately I couldn’t find the article archieved in the Globe so I have just cut and pasted it here…Thanks for sharing this Heather…what’s your daughter up to these days?

    Helicopter Mom lets go
    h. resnick
    From Thursday’s Globe and Mail
    Published Thursday, Feb. 05, 2009 10:05AM EST
    Last updated Thursday, Apr. 09, 2009 11:19PM EDT

    I’m one of those mothers – smothering, protective, controlling my daughter’s every move, comment and reaction to ensure she is safe, sound and sociable with a secure, employable future.

    For 22 years, I conferred and argued with doctors, social-service workers, teachers, government employees, parents, employers and more. I structured her life to lead her along the path of good fortune. I made decisions contrary to hers, creating stress and disagreements that often spiralled out of control.

    From my daughter’s perspective, she would probably say, “My mom is a nag. She’s always on my case. Do this. Don’t do that. Go wash your face, know your place, give people space, make haste not waste, blah, blah, blah …”

    Unlike other helicopter mothers, I believe I have justification – that my controlling behaviour serves my daughter’s needs.

    Even though we share the same goal of financial and emotional independence for our children, my case is different – my daughter has a mild intellectual disability. But, as a colleague said, “There is nothing mild about having an intellectual disability.”

    Despair would often overshadow my daughter’s life. For too long, until we found the perfect camp and private school, she lived with taunting, rejection and avoidance from peers, teachers and others.

    Frustrated and crying, she would ask: “Why can’t I do what every ‘normal person’ does – graduate from high school, go to college or university, get a good job and live on my own?”

    It was gut-wrenching to see her suffer. So my husband and I became active participants in trying to give her opportunities for self-fulfillment. We provided whatever remediation she required, as many extracurricular activities as she could handle and organized her social life, volunteering and employment. No sacrifice was too big to help her live life.

    My daughter has always had a fascination with orphan stories such as Little Orphan Annie and Oliver Twist. At first, these stories created a fear of abandonment. But then she developed the romantic notion that a life without parents was an exciting prospect.

    For the past few years, she has scoured the Internet for programs for people who have learning disabilities, out of range of our home. Her goal: independence. She believed her disability was merely a problem with learning. My husband and I didn’t have the heart to tell her that her disabilities were much more severe – everything in life would be a challenge and sometimes she might not succeed.

    How do you tell your child that it isn’t just a matter of learning differently, but that she will have limitations in many of the things she does? Counselling with a social skills therapist has now made her more aware of these challenges.

    We would often disagree with her school choices, but sometimes we would let them lead to natural consequences – rejection by the institution. We never wanted to set her up for failure, but we can’t protect her from all the negatives she faces. We want her to learn to cope with disappointment and discover solutions. We have taught her that you can’t know if you will succeed unless you try, and that you will learn from failure.

    Finally, she found a program that left us with a good impression. But it was in Florida, with nothing equivalent in Canada. She would learn independent living skills while staying on her own in a regular apartment.

    After months of research, talking with the program administrators, parents and students and visiting the institution, we decided this was an excellent opportunity worthy of the financial sacrifice.

    We sent our daughter for a trial run at the three-week summer program. She loved it and was determined to do it for a year.

    So, after months of pursuing this avenue for her, I relinquished my parental control and moved her into her own apartment, far from the security of home and family. While she is vulnerable and I worry for her health and safety, it’s exciting to let her experience the wings of freedom. How many “normal people” will never step outside their security box?

    On our last night together before she began her journey as an independent woman, I gave her a last bit of advice about food storage.

    She’d had enough. In her typically combative style, she said: “I am sick and tired of you telling me what to do and how to do it. This is my apartment.”

    Her words burned a gaping hole in my heart, but she was right. There were no tears, although they came later for me, no hugs and no “thanks Mom,” although she did say thank you several times over the two weeks I helped her settle into her new digs, and I believe she appreciates everything in her own way.

    I wished her luck in her new life and walked out her door.

    Heartache and relief prevailed as I left my daughter to follow her long-time dream: “To screw up like everyone else does and learn from my mistakes.”

    H. Resnick lives in Thornhill, Ont.


      Pilot Parents

      Pilot Parents is a support group consisting of parent volunteers who have a child with an intellectual disability. They provide emotional support and first-hand knowledge to parents whose child has been recently diagnosed with an intellectual disability.

      Here is Bonnie’s Story:

      A couple of months ago, I was asked if I would call a young mother who was pregnant with a baby who had Down syndrome. The mother had also found out that the baby had a heart condition. I hadn’t been active with the Pilot Parents for years, as my daughter is now 27 years old and life has taken us into different directions. I said “yes” because the situation was very similar to when my daughter Jenny was born, except back then we didn’t know that she had Down syndrome until after she was born. We found out the day after her birth that she also had a heart condition and they couldn’t tell us at the time how bad it was.

      It’s funny, because you think all that is behind you, and can’t affect you anymore, but no, all the feelings and memories come flooding back, and it seems like it just happened. Except now you are reflecting over many years and I know how things turned out. At the time you don’t know what to expect and are scared to death, on the outcome. It turned out Jenny had a hole in her heart – it affected three out of 4 chambers in her heart and the mitral value was split in half. So essentially the blood was swishing around the 3 chambers and eventually some would make its way to the fourth chamber and out to the rest of her body. It took us 11 long months to get Jenny up to 10 pounds so they could operate. She was born at 7 pounds.

      Like I said reflection is a lot easier, and knowing Jenny as an adult is amazing. She has grown into quite the young independent woman.

      So I emailed the family and told them, ”Congratulations on your pregnancy, and welcome to the wonderful world of children with Down syndrome.” As it turned out we live very close to each other. The mom has an amazingly positive attitude. She had a hard time getting pregnant and was thrilled. Of course the worry is there about the health of the child, but knowing ahead of time, helps to prepare the doctor at delivery. I invited her to come to the Parent Share meeting and meet other moms who have children with special needs. The mom came to the meeting and felt very comfortable to be amongst a group of woman who could immediately relate and everyone was relating their experiences and things to do.

      I told her about the wonderful things Jenny is doing and invited the family to come visit her at her home. Unfortunately we have not been able to do that as yet, holidays came, Jenny got sick for quite awhile and colds and things kept coming in and out of the house. We still plan to get together, so that she can see how well adults with Down syndrome can do!

      I received this email from the family:
      “As you may recall, we are expecting our Baby Boy early March and although finding out he has Down Syndrome and some heart issues has been hard, we were lucky to have connected with you. Thank you for answering all our questions, sharing your experiences and giving us hope.”

      It’s amazing how the little things can mean so much!

      Bonnie Heath

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