Category - disability

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Because She Was
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Rage Weeding
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Advice From A Special Needs Mom In The Middle
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Purple Day—Our Epilepsy Story
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How Amazon Alexa Helps With Speech Development

Because She Was

When I first met Shelley Brouwer on Instagram I felt her warmth instantly. She was genuinely interested in my daughter and happily cheered on each of Avery’s little victories. At the time I had no idea what Shelley had been through. Then one day she messaged me to say she had written a book about life with her daughter. She asked if she could send me a copy of Because She Was. I was hesitant to read it at first—through Shelley’s beautiful Instagram posts and blog, I’d already discovered the ending. I brought the book with me on a road trip and read it from cover to cover in a few short hours. I couldn’t put it down. As my husband drove and the kids were busy with tech and snacks in the backseat, I read and cried intermittently along with the windshield wipers. At one point my husband said cautiously, “Lis, I don’t know if you should be reading this…” He was worried because of the tears. And yes, parts of the story are heartbreaking, but I was completely drawn in. Shelley’s beautifully written story weaves forward and back in time, outlining the history of her family’s remarkable life. And though[…]

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Rage Weeding

We all have opinions. We also have the right to share those opinions—respectfully and thoughtfully. But isn’t it interesting that some people who have no idea what they’re talking about… let’s say about special needs or epilepsy or PTSD (since they have zero experience in these areas), still feel obliged to offer their advice, judgement, and criticism anyway? And when I say it’s “interesting” I’m being nice. When we share online (and I won’t stop sharing stories about my life, our daughter, or my family because I believe it’s important and often helpful… the medical stuff and the struggles and triumphs I mean, not so much the cat pics and ridiculous puns) we open ourselves up to negativity. But, it doesn’t mean we have to respond to it, or believe it, or accept it. Unless you’re walking the walk (whatever unique walk it might be) maybe take a minute before you make assumptions according to your inexperienced experience. We all have the right to feel the way we feel. You declaring otherwise, isn’t going to change that. Sometimes our fears or parenting methods stem from experiences you can’t possibly understand unless you’ve been there. On a positive note—the anger I felt about this[…]

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Advice From A Special Needs Mom In The Middle

If you were to divide your special needs parenting life into stages, they might be arranged from the day your child is diagnosed with differences, to the period when they reach adulthood and possibly independence, or the equivalent based on their abilities. Some parenting timelines might end before that. I can’t bear to think about that. I know parents who had a child leave this earth too soon, and though it’s painful to imagine, I have learned so much from them. Their stories about grief, and strength, and compassion, and courage have encouraged me to find gratitude through the difficult days.  I’m a mom currently somewhere in the middle.   I read this quote recently. I don’t know who wrote it originally, but I thank them for these words.  One day you will tell your story of what you’re going through now, and it will become part of someone else’s survival guide.    Sharing our unique family’s story helps me to process, celebrate, and make peace with what whatever we’re going through. And if it happens to help or comfort or even guide others who are following behind us, that’s even better. Here a few things that we’ve learned along the way;[…]

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Purple Day—Our Epilepsy Story

When our daughter was eight months old she was diagnosed with a chromosome 3P deletion/duplication disorder. Doctors told us to expect some devastating things. Some came true, but thankfully most did not. The one thing they didn’t tell us to expect was seizures—those began when Avery turned three. We were caught completely by surprise.  One afternoon I put Avery down for her nap and when it seemed to last a little longer than usual, I went to check on her. When I stepped inside her room I knew something was wrong. There was vomit on her crib rails, she was blue, and she wasn’t breathing. I scooped her up, limp in my arms and called 911. I must’ve screamed because our son, who was six at the time, had come out from his room and was looking at me with the most fearful eyes.  I said, “Sebastian don’t be afraid, but in a few minutes some fireman are going to come through the door. They’ll help Avery.” I didn’t understand what was happening. I’d never seen her have a seizure. We didn’t know yet that she has epilepsy. I told our son to keep out of the way and that[…]

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How Amazon Alexa Helps With Speech Development

When our daughter was a baby we were told she would likely be non-verbal. We used ASL with her from an early age. Slowly she gained sounds, then words, and then short simple sentences. She is still profoundly speech delayed, but is developing new words and phrases every day.  Speech therapy, activities and games that promote language development, and simply chatting with her every day casually modelling speech, have helped tremendously.  Smart technology is the latest helpful tool. Before I go into how much we’re loving our new family member, Alexa, let me start by admitting that I’m fundamentally against Google Home and Amazon Echo and all these smarty pant eavesdroppers. In fact, I’m so turned off by the invasion of privacy that I made my husband return the Google Home unit he bought me for Christmas. I made quite the stink about it, ranting about how they’re always listening and how wrong and insidious the whole thing is.  Flash forward to the week we spent at my brother’s house over New Years. They have an Alexa Echo and I fell for her, madly. This digital gal knows pretty much everything about anything. She can make life not only easier, but[…]

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