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Advice From A Special Needs Mom In The Middle

Jun 23 2019

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 bare 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;[…]

May 23 2019

Recently someone tagged me on Twitter, attacking me for my lies relating to the current state of our school system. I was shocked, but then I laughed uproariously when I realized this outraged woman had confused me, Lisa Thornbury, with the Ontario Minister of Education, Lisa Thompson. As I respectfully corrected her mistake, several tweeps suggested I take the other Lisa T’s place. Well thank you, but I don’t certainly have the stomach or the thick skin required for politics. However, if I did assume the role of Minister of Education there are a number of things I would do. And undo. The list is lengthy, but I’d start by making education an actual priority and begin on the front lines by offering teachers much needed support. Have you ever volunteered in a classroom? Ever go on to field trip or do homework with your child? If so, you know that teaching is not for the faint of heart. But, it’s our goal as a society to equip students with the skills needed to become functional adults. So it’s a no-brainer that we need to support teachers in every way possible so they can teach. So what do we do?[…]

Apr 19 2019

I was a teacher for ten years before my daughter was born. When she was diagnosed with a disability during my maternity leave, I retired from my job in education to stay home to care for her. I love telling people I’m a retired teacher. It’s fun to watch them try to work it out wondering, “How old IS she exactly?” For educators, diversity demands they provide inclusive, accessible learning environments that inspire confidence and encourage independence. As a former teacher, and now the parent of a child in the school system supported a special education resource team, I know how difficult it can be to ensure that every child is successful. These are difficult times in education. With larger class sizes and less support for children in need, teachers have more on their plates than ever before. We should be giving teachers every available tool to make their job as educators more effective. Logically, everyone benefits from this— teachers, students and their families, and society in general. Schools were established to help children grow into empowered adults. When we give teachers the proper tools, this becomes attainable. By providing accessible technologies, teachers can help students with disabilities unlock their[…]

Mar 26 2019

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 to help Avery.” I didn’t understand what was happening. I’d never seen her have a seizure. We didn’t even know she had epilepsy. I told our son to keep out of the way and that everything[…]

Mar 10 2019

One of my daughter’s favourite Education Assistants at school is expecting a baby. This has resulted in great excitement at home and a lot of questions from my daughter. Like, “When are you having another baby, mum?” (Um, when pigs fly.) And, “When can I have a baby?” This one always breaks my heart a little. And, “Is Mrs. R’s baby going to be a boy or a girl?” (We now know the baby is a boy!!) And, “What will we name him?” Notice how she’s inserted herself into the process? We won’t know the baby’s name until he’s born because they’re keeping it a surprise. Smart move. When my husband and I were expecting our first baby we had a name reveal party—just for a few close family members including the grandparents and godparents. It was mostly an excuse for a festive get-together. Pregnant women will go to great lengths to have food made for them. We did this later into the pregnancy when we were confident this one was “for real.” Those who have miscarried know what I’m talking about. Somewhere around dessert we shared the boy and girl name options for our soon to be first born. We kept it[…]

Mar 07 2019

As a new mom-to-be, I swore my kids would never drink juice or pop or even know the taste of sugar. I absolutely believed that as I rubbed my pregnant belly and made all kinds of rigid proclamations about my future parenting. I also vowed that my babies would be exclusively breastfed until they could talk. But, thanks to birthing two tongue-tied infants, that didn’t quite go as planned. I made loads of rules, including the one stating there would be absolutely no television until school age. Ha! I really wish I could find the photo my husband took of our infant son—bottle propped up by a pillow and tipped toward his mouth, totally fixated on a Baby Einstein DVD while I rocked his bouncy chair with my foot from the couch. You learn quickly as a new parent that plans change. The most successful and relaxed parents are cool to roll with it and they don’t beat themselves up about it. I really did try to limit the amount of sugar in our house, including fruit juice. But then my daughter started taking anti-seizure medication three times a day and they were horrible. They tasted like chalk dipped in[…]

Mar 03 2019

If you think you’re too young to get shingles—think again. When I took my son to our doctor about a lingering cough, I thought since I was there I’d asked her about seven red weird welts on my hip. I thought they could be spider bites. (Thank you to my brother for putting that horrific thought into my head.) I also wondered if I could be allergic to my new jeans — specifically the dark wash that was dying my skin blue. My husband helpfully suggested the hives could be from “tight pants and all the rubbing.” He paid handsomely for that comment. I assumed that when I lifted my shirt to expose the rash on my lateral muffin-top the doctor would say, “That? Oh it’s nothing. Just dry skin. Be on your way you adorable little hypochondriac.” Imagine my surprise when she told me I had SHINGLES! “Are you kidding me?” I gasped. “What am I, eighty?!” Turns out my indignation was misplaced. Apparently the shingles virus is not elderly exclusive. Upon announcing my affliction on Facebook, as one does, I was surprised to learn many of my young-ish peers have also suffered from this painful ailment. One friend told me when she experienced shingles in[…]

Feb 15 2019

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[…]

Jan 17 2019

SUDEP (sudden unexplained death in epilepsy) When a child in our community dies suddenly, the world closes in around us. Having to explain to our daughter that her ten-year-old friend died unexpectedly was hard. It’s tough enough to make sense of it as an adult. For a child, it’s incomprehensible. The sorrow we feel for this beautiful family goes beyond sympathy. We feel a level of empathy that only other epilepsy parents would know. When a child is lost to SUDEP all parents of children with epilepsy receive a jarring reminder that this can happen. No child is exempt. We are devastated for the family. It hits close to home as we direct some of the shock inward by recalling our own children’s worst seizures. We relive the panic. We hear the ambulance sirens and repeat the silent prayers and promises to the almighty or whomever is listening to “Just please, please let her be okay.” When an otherwise healthy child dies without warning or explanation, it shakes us to the core. For me, post traumatic stress has brought up memories from our daughter’s first violent seizures at the age of three when we came very close to losing her. SUDEP—sudden[…]

Dec 18 2018

I have a lingering childhood memory of my friend’s cat—specifically of the sparkly tinsel hanging from his butt one Christmas. When I tried to pull it out my friend’s older brother shrieked, “Stop! You’ll pull his intestines out!!” I was horrified. Later that winter when I was tugging on a ribbon in search of a coin in the money cake my mom made for my birthday, all I could think of was yanking out a string of cake covered cat intestines. Nobody cherishes memories based on separating Fluffy from his innards, so here are some tips for keeping your furry family members safe and alive over the holidays. FOOD Candy can cause gastrointestinal problems like vomiting and diarrhea, while chocolate and xylitol (found in sugar-free candy and gum) are potentially deadly. Rich holiday foods can cause stomach upset or even pancreatitis. A little bit of lean meat is fine, but offer sparingly (and not directly from the table. Ya, I’m looking at you Grandpa!). Foods with raw eggs and undercooked poultry may contain salmonella bacteria. Onions and garlic can be toxic to pets. Plus, my dog’s breath is already bad enough. Bones from your holiday meal can cause obstructions and perforate the[…]

Advice From A Special Needs Mom In The Middle

Digital Tools To Help ALL Students Achieve Success: IncludEd Part 2

IncludEd: All Learners Welcome

Purple Day—Our Epilepsy Story

How To Choose A Baby Name

Why I Broke My “No Juice For You” Rule

The 411 on Shingles

How Amazon Alexa Helps With Speech Development

Living With The Fear of SUDEP

How To Keep Pets Safe During The Holidays