Archive for December 2019
Help STOP Infantile Spasms
Nearly 1,200 infants every year are diagnosed with a rare seizure disorder called infantile spasms, yet many health care providers have never heard of this disease. There is a great need for awareness to help parents, caregivers, and providers to understand the signs and symptoms. Infantile spasms present as seizures that occur in infants under age 1 and can cause catastrophic, permanent damage to a child’s developing brain. Even more frightening, infantile spasms are often subtle enough to be easily overlooked by both parents and health care providers. Prompt diagnosis…
Read MoreIt Was Against the Health Policy
Today, we went to the library. It’s the same library I used to visit as a child. I’ve taken the boys several times in the hope of instilling a love of reading. Milo, my eight-year-old son with autism, was having a difficult time — nothing new — but I was taking care of things. I sat with him at a table in a corner of the children’s section while my six-year-old son, Linus, selected books nearby. Just seconds after I snapped this picture, a librarian approached us. I looked up…
Read MoreFriend, Take the Picture
I posted these family pictures on my personal page recently. On the caption, I impulsively made the statement, “I’m not sure why we waited seven years to make these happen”. I’m not sure what I was thinking when I said that. Because after reflecting, I know exactly why it took so long. I didn’t take the pictures because things started out hard and I forgot how to breathe. Jackson’s stroke. Then carefully weaning the anti-seizure meds for months. The waiting on the next round of blood work to know if…
Read MoreA Bittersweet Sixteenth Birthday
My son Brian’s birthday is next week. 16 years. 16 love-filled anxiety ridden years. 16 years that I could never have predicted in my most worrisome of scenarios, but the 16 years I’ve grown the most in my life. Some times you need knocked around to know what you are made of and knocked around is exactly how I feel as we turn the calendar to Brian’s birthday month. Brian’s birthday, 12-12, is the most bittersweet day of the year for me. It is more meaningful than any holiday, anniversary, or…
Read MoreHe Must Be Outgrowing It and Other Things Not To Say
One of the challenging parts of high functioning autism is the way its seen and understood by the outside world. Most of the time the child’s diagnosis is not immediately apparent to the people they encounter. You may notice a speech delay, some difficulty with communication and social situations, lack of social comfort, sensory issues, short attention spans, narrow interests, and being prone to tantrums or meltdowns, just to name a few. Every child on the spectrum is different from the next and should not be compared just because you…
Read MoreThe Gift of Perspective
This ‘ten year challenge’ social media trend has me reflecting. There’s a lot of living and learning I went through over the past decade. I finished university, survived my first heartbreak, started my teaching career, gained and lost important relationships, bought and sold two homes, navigated the shock of a miscarriage, found my way back to that guy who broke my heart, had a daughter with and married him, battled through the Autism diagnosis of my toddler and started on an unexpected journey of special needs parenting. Today, I found…
Read MoreThe Things Special Needs Parents Should be Talking About
There is a part of this special needs parenting thing that I’ve been thinking a lot about lately. I never thought about it when he was younger. Honestly, it never occurred to me as a thing to think about. I was so focused too. Focused on helping him in the moment. So this never occurred to me. But now that he’s almost 9, and we can breathe, and he’s at peace, it’s starting to creep in. This thing. This new worry. It’s seeping in around the edges of my acceptance.…
Read MoreWe’ve Never Visited Santa
We’ve never visited Santa. He’s never asked me for the coolest toy. We’ve never baked cookies together. He’s never made a Christmas list. Or sang in a Christmas pageant. No snow mans or Elf on the Shelf. For so many years, Christmas was just another day. He didn’t acknowledge the tree or decorations. He didn’t open presents. Or wake up early to see what Santa brought. I used to get sad. Holidays were hard. I had a little boy who was oblivious. And not only was he oblivious, holidays were really…
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