I had the honor of meeting with a doctor today. A very important doctor. I was telling him all about my Cooper. What we’ve been through. I started at the beginning. He didn’t sleep. Not ever. Everyone told me it would get better. They said I was exaggerating. Only I knew I wasn’t. I told him it took Cooper six years to sleep through the night. And even today, it’s still a struggle. I told him about the burst ear drums. One after another. How no doctor would get close…
What is a brother? Funny question right? Do brothers have to play together? Or talk? Or spend time together? Do they have to do those things? For the first three years of Sawyer’s life, he followed his older brother around. First by crawling. Then walking. Finally running. See, Cooper never stopped moving. Not ever. Sawyer thought it was a game. Cooper would run from room to room, tearing apart beds, putting garbage cans and shampoo bottles in the bathtub, emptying bookshelves and so on. From room to room he’d go.…
Yesterday morning, as my two boys were snuggling, I asked my 6-year-old son a few questions. ‘Sawyer, are you happy we had another baby?’ ‘Yes mama.’ ‘What do you love about him?’ ‘He’s so cute and small. And he’s a boy.’ ‘Is there anything else?’ ‘Yes.’ (silence) ‘What is it buddy?’ ‘I’m not lonely anymore mama.’ I felt like I’d been punched in the stomach. My old soul in the body of a five year old boy. How did I not know he was lonely? My husband and I do…
To the mom in the grocery store, who stares while my child is screaming, and your child is calmly walking alongside of you…you will never understand. What you don’t see, is that he has sensory processing issues, and he is overstimulated. To the doctor, that says “He will be fine, it’s just a speech delay.” You will never understand. I knew at my child’s one year checkup that something was different. But, you shrugged it off. To the acquaintance that says “Oh, so he is high functioning…he will probably grow…
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…
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…
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…
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…
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…
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…
