Disability Advocacy

October 6th is World Cerebral Palsy Day. In honour of this day, I had to share this and am doing so with Savannah's permission. It's my proudest parenting moment and I need to shout it to other families who think their children don't understand or assume they will never learn.  Savannah was changing into her swimming costume and when she gets to a certain point, she calls me to help her to finish dressing. So she called and I went to find her not dressed but distraught. Her costume was ...
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Are you okay? I do not want this December to be like the last one. I do not want to talk about vitamins, vaccines, and the virus. I do not want to worry. Worry about the people I love, the people I know, everyone in my life. I do not want to pretend to be happy, and I do not want to live in sad. I do not want to make plans and have them turn to sand. I do not want to dig any deeper to find joy. I ...
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The Christmas season is rolling around again and in less than a few weeks schools will close for the summer holidays, families will be finalising travel plans or everyone will finally agree that turkey does not have to be on the menu. Many families are looking forward to the festivities, and yet there is a marginalised group who love and hate this season. For parents of children with challenges, this time of year can be a stark reminder that they are parenting from the trenches. When the holiday season is ...
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This post is dedicated to parents who put aside their dreams, have taken the knocks and wake up every day to pour faith, hope and love into the world. I see you. October marks Mental Health Day, Cerebral Palsy Day and Augmentative and Alternative Communication (AAC) month (this is for people who use other ways of communication than talking because they have limited or no functional speech or are non-speaking). This month is also Down Syndrome Awareness, Breast Cancer Month and many more awareness days. The first three awareness topics ...
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I am asking this question for myself and on behalf of other parents to children with a disability: Are all children a blessing or are only children with a disability a blessing? Often when people learn that I have a child with a disability they reply with "she must be a blessing". Well, all children are a blessing. And, they contradict the above and confuse me when expecting a baby either by pregnancy or adoption and say: "as long as the baby is healthy and please God has no challenges" ...
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I wrote the first part of this piece eight years ago and shared it a few times since then on other platforms. This is the second part to that piece. As a writer who shares my own experiences about my struggles with childhood trauma, sexual abuse, being a teenage parent and parenting a child with a disability; it’s special when people write to me to express their gratitude. I don’t take for granted that it is a God-given talent to put words to some unspeakable hurts and experiences. It is ...
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This is my first blog post in three months. Time is a monster in my life but today, I had to write this, as short or long as it may turn out to be. In a time when parenting has become a central focus for many families, it is appalling to me that many people hold to a belief that in families where a child has a disability, it will always be unfair to the siblings of that child. Now before I offer some insight into why this blanket opinion ...
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Most people have an idea of what the worst circumstance is that could happen to them, and sub-consciously or consciously navigate their lives trying to avoid it. For some it is the fear of illness especially if their parents faced complicated health problems. For others it could be financial: the fear of being poor (no one fears being wealthy).  For some it could be losing someone. Either when a relationship ends or when a person's life ends. For parents of teens, it is a myriad of concerns that we fear ...
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The last few days, our eldest daughter Savannah was excitedly preparing to celebrate Valentine's Day. This happens in two parts: exchanging presents and baking for the actual day, then a Valentine's party with Savannah's squad on the weekend. Talisa and Eli love this celebration because Savannah's energy is directed at making them happy. Yesterday afternoon, we should have been enjoying the fruits of Savannah's labour. Instead Valentine's Day was not what we planned: Heartbreak.   As we are still figuring out how best to help our children through this, I am ...
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When parenting a child with a disability many people offer advice or opinions from their perspective of what would be best for a family like ours. People are not shy to give voice to the potential problems which they believe we face. Specifically, people assume that when non disabled siblings are raised with a sibling with a disability, it will cause some level of hardship in some way to the non disabled sibling. The idea that non disabled siblings will be responsible for their disabled sibling, is frowned upon. This blog ...
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