Category - Special Needs

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Separated Siblings: She Waves Goodbye As He Leaves For High School
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PTSD—Always There Under The Surface
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I Have A Few Choice Words For That Judgemental Woman
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When Your Child With A Disability Is Told, “You Can’t Play With Us!”
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Disabilities Are Not “Special Needs”
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25 Quotes About Parenting A Child With Disabilities
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A Trip To The Mall That Meant So Much More
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Special Gifts For Special Families
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Dear Parent Of A Newly Diagnosed Child…
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The Special Needs Parenting Sweet Spot

Separated Siblings: She Waves Goodbye As He Leaves For High School

My daughter packed her backpack weeks ago in giddy anticipation of returning to school. She asked me to paint her nails and “do her hair pretty.” She couldn’t be more excited to start grade six.  My son was in denial that summer was ending right up until the end. He gave little thought to his first day of high school outfit. He wasn’t even planning on brushing his hair until I “suggested” it. I pleaded with him to let me take him shopping, but he refused. “Mum, I’ve got enough clothes. I’m fine.” Kind of hard to take him seriously when he’s arguing his point in mismatched socks and pants that are miles too short.  But he’s in high school now. He’s a big boy. In short pants. His pants, his choice I guess. (Mind you, I went to the mall today and bought him a few new things against his will. I can’t have the kid looking like he’s been stuffed into shrunken kahkis all year.) High school… no longer at our local elementary. He’s moved on and this is the first time his little sister will be at school without him.  At first she didn’t make the connection. “What?[…]

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PTSD—Always There Under The Surface

Adrenaline is nature’s way of keeping us safe in the face of danger. It serves a purpose, but when a traumatic experience causes you to live in a constant state of fight or flight it can wreak havoc on your life. PTSD can wreck you if you let it.  We’ve all experienced that jolt of muscle quivering energy that floods our bodies during scary or stressful situations. Like when the car in front of us stops unexpectedly causing us to slam the brakes. Or when a glass slips from our hands, but we catch it before it smashes. Our hearts race, but we quickly recover and move on.  But sometimes the situation is painfully serious and the recovery time is substantial. Like when your child has a medical emergency—a near fatal seizure or maybe she chokes and stops breathing. I can’t begin to describe how frightening that is. We’ve been in this horrible place a few times over the past decade. We’ve watched helplessly as our youngest lay unconscious, or unable to take a breath.   Our daughter Avery’s near fatal seizures have rendered her lifeless in my arms. I’ve seen her lips turn blue. We’ve watched paramedics bring her back to[…]

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I Have A Few Choice Words For That Judgemental Woman

My daughter is CHATTY. There’s rarely a moment of silence with her around unless— a) she has a mouthful of food. b) she’s sleeping (though she talks in her sleep a fair bit). c) I’m brushing her teeth but even then, she manages to hum. d) she’s absorbed in sending a text (which is essentially digital talking) or watching TV.  Her chattiness is amazing considering her “profound speech delay.” Perfectly formed sentences be dammed, if she makes an observation or has a question, you’re going to hear about it.  She might know what she wants to say, but finding the right words is a struggle. I’m having a similar issue at the moment. I’m forgetting the names of simple household items and stumbling over my words. Turns out this is a very real and very annoying side effect of peri-menopause. Oh hoorah, good times ahead.  Anyway, that’s to say, I get it. It’s incredibly frustrating to know what you want to say, but due to wonky wiring between the word bank in your head and your mouth, the words escape you.  As Avery’s family, we almost always know what she’s trying to say and we usually let her finish on her[…]

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When Your Child With A Disability Is Told, “You Can’t Play With Us!”

  My daughter loves playing at the park at the end of our street. She’d stay for hours if she could. But since she’s a child with a disability, she can’t go to the park by herself like her peers do—they can come and go as they please, but my kiddo has to drag her mother along. “Drag” makes me sound like an unwilling companion, but I’m usually content to supervise. Though some days, admittedly it’s inconvenient. And boring. After a few pumps on the swing and perhaps an (awkward) chin-up or two on the monkey bars, my thoughts quickly turn to, “I need to start dinner” or “I have to return that phone call by 5pm” or “I have to pee” or “I wish I brought more coffee” or “I really, really have to pee.”  But she’s a kid who needs fresh air, and climbing and swinging, and companionship, and your basic childhood fun, so I park myself at the park.  Yesterday was a beautiful spring afternoon so I was happy to spend some time warming the park bench.  Within a few minutes of arriving, the play structure filled with kids from Avery’s school. They quickly organized a game of[…]

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Disabilities Are Not “Special Needs”

It’s taken a decade of research into genetics and specific diseases and disabilities for me to gain even a fraction of understanding of my daughter’s syndrome. I still have no idea what I’m doing half the time. And I make plenty of mistakes.  Case in point—until recently I didn’t even realize that the label “special needs” was outdated and unacceptable. I’m immersed in this community, yet I was unaware. And if missed this, maybe you did too? I’m not easily offended. I curse, I make gross jokes. I try not to take what people say too seriously and I try to cut people some slack when they say the wrong thing. We all slip up. Words don’t tell the whole story. Our actions and intentions define who we are.  But, when we are told point-blank that something is offensive, we should pay attention. Isn’t it our responsibility as compassionate citizens to do no harm whenever possible? And seriously, updating our vocabulary costs us nothing. Let’s take the r-word for example. I’ve written about it quite a bit over the years. The word itself is harmless. It means late or delayed. When used appropriately, it should cause no harm. But it does.[…]

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25 Quotes About Parenting A Child With Disabilities

Here are a few quotes about parenting that never fail to deliver a ray of sunshine on the difficult days. Feel free to leave a comment with a favourite quote that inspires you. 1. “Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It’s about understanding that they are exactly the person they are supposed to be and that, if you’re lucky, they just might be the teacher who turns you into the person you are supposed to be.” ~ Joan Ryan 2.  “One of the great things that any community can do is not teach tolerance, but live tolerance, not talk respect, but live inclusivity.” ~ Michael Pritchard 3.  “The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart.” ~ Helen Keller 4.  Don’t focus on what she can’t do. Focus on what she can do. Like a boss. ~ Lisa Thornbury 5.  “Parents of children with special needs create their own world of happiness and believe in things that others cannot yet see.” ~Unknown 6.  “Sometimes the things we can’t change end up changing us.” ~ Unknown 7.  “Listen[…]

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A Trip To The Mall That Meant So Much More

This post isn’t intended to be political, but his electoral “win” makes me worry about my daughter’s future. He who shall not be named doesn’t even try to hide his distain for people with disabilities. It makes me wonder if her life will be more difficult because he’s giving people the message that it’s okay to be intolerant and cruel. However, there’s a kindness army rising up against hatred and discrimination. Kids are being raised to believe in equity and love and compassion. We’re surrounded by it, basking in their warmth and inclusion.  My daughter’s school and neighbourhood friends treat her like the important person she is, worthy of respect and friendship.  Avery’s been asking to go shopping with friends for weeks. She doesn’t actually care about buying anything. It’s about the experience. And her purse. She brings it with her on special outings. Inside you’ll find her lip balm, her pretend debit card, her (bicycle) driver’s license and a handful of coins.  I drove my daughter and her two friends to our local mall to do some Christmas shopping.  I tried to stay in the background to give Avery the feeling of shopping on her own with her friends like[…]

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Special Gifts For Special Families

What do exhausted, stressed out parents really want? What’s an age appropriate gift for a child with autism? Is there an inexpensive toy suitable for a child with fine motor delays? Can certain games help with speech and language development and if so, are they actually fun? All good questions I’ll try to answer below—my merry gift to you this retail festive season. Parents, especially those parenting a child with special needs, rarely take the time to pamper themselves. The holidays are a perfect opportunity for you to gift them something that forces them to take a moment. Yes, I said “force them.” I know this from experience. #stubborn Presents To Pamper Parents:           Special parents can be painfully practical. Since we’re often at a loss for time, practical and useful is always appreciated. Practical Presents for Parents:         Sometimes it’s hard to know what to buy for a child with physical or developmental needs. When in doubt, ask the parents what might be appropriate. Here are a few ideas.  Gifts for Kids With Cognitive, Motor, and/or Speech Delays:               Happy gift giving!  Feel free to message me[…]

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Dear Parent Of A Newly Diagnosed Child…

The early days when you suspect something might be wrong with your child completely suck. Literally—the fear and worry sucks the life out of you to the point where you wonder if you have the strength to actually go on. But the day you hear the words, the actual diagnosis, is the worst day. It’s indescribably (though I’ll try) horrendous.  When we got the phone call that confirmed our daughter has a chromosomal disorder I was dumbstruck. I couldn’t make sense of  what was happening. There was a loud ringing in my ears that made it hard to think. I fled outside and gasped for air. I couldn’t breathe. I eventually came back in and sat quietly on the couch beside my husband and we cried.  A few months later our daughter ended up in hospital which is a despicable story in itself (doctors are wonderful people, but they don’t always see what you see. When a medical professional tells you that it’s all in your head, listen to your gut and do what needs to be done.) This is when further genetic testing revealed the extent of our child’s chromosomal deletion/duplication. The first few weeks with this new knowledge[…]

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The Special Needs Parenting Sweet Spot

It’s a struggle to stay rooted in the present. Memories of traumatic moments from the past seep in and thoughts of what “could” happen trickle through the cracks. These leaks can start to erode the “special needs parenting sweet spot.”  “Be mindful!” I remind myself constantly. “All the good stuff is happening now! If you don’t open your eyes and breathe, you’ll miss it.”  Sitting sandwiched between two conversations at my daughter’s adaptive soccer league last week I felt like my happy place was put in peril. As I sat on a cold metal bench watching wildly enthusiastic kids chase after soccer balls followed closely by their volunteer partners. I couldn’t help but hear the two conversations happening separately on either side of me.  One pair talked about their young children recently diagnosed with complicated disorders. The fear, the confusion, the anxiety—I remember it well. The “beginning” is a unique kind of difficult. So many questions, so much anxiety—parents reaching out in desperation to anyone who might have answers, or at the very least offer some guidance.  My stomach clenched as I listened to the despair in their voices. Though my compassion was overshadowed by my relief in having escaped the early[…]

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