My son said to me today, “ I want home to be fun”. So, I wrote both of my boys a letter. It’s long, but my heart was heavy. A letter to my boys ( and other siblings) of newly diagnosed kids with special needs: No one told you your path in this world would take a sudden turn. It would get bumpy and rocky and sometimes you’d be hanging on for dear life to the edge of mom’s last ounce of patience before it would straighten out for a…
I recently found out I had a challenging kid. Now I say that with a smile on my face and the love of a mother. I mean, I knew. Of course I knew. My son is nonverbal with severe autism. He is also a big kid. We’ve had our challenges. Our ups and downs. But I guess I didn’t know just how challenging he could be, and often is, every day. And I know why. Home is his safe space. We don’t challenge him at home like they do in…
I just smoked my funny bone on the door to my laundry room. It literally took my breath away. And had me wondering if someone was watching me, laughing, like The Truman Show. I was cursing about the laundry. And apparently flailing my arms. It just blows my mind how 5 people can have so much laundry. Wet swimsuits, stinky towels, pee sheets, stained up t-shirts, gym clothes. Clothes ranging from a 12 month onesie to an XL t-shirt. Baseball uniforms and hockey jerseys. Clothes piled on the floor of…
My son has never ran inside to show me something. He has never rushed home from school to tell me about his day. He’s never told me a story. Or even asked me a question. There is no school work to look at. No homework to do at night. No report cards. His artwork is not hanging on the fridge either. We said goodbye to all of that possibility in kindergarten. We said goodbye to typical education. We shifted our focus. We picked the things that really mattered. Safety. Awareness.…
Be with the man who holds a leg in the delivery room. Who helps hold your boob when you are sobbing over trying to get a newborn to latch at 3 AM on day two. Who thinks you are beautiful despite the baby weight. Be with the person who changes diapers. And I don’t mean just baby diapers. The one who will change them long after age 2 and 3. And coaches t-ball and goes to every hockey game and Miracle League Baseball Game. The one who gives your babies…
You think the big things are the most important. The ones that will make the most impact. Saying words. Making a friend. Joining a team. Going to school. Graduating. Those are the milestones we work towards. Right? And yes, of course they are important. But as I grow into being the best mom for my son, and watch him grow into himself, I realize it’s the little things that make the biggest difference in our world. That make the most impact on our every day life and sanity. A smile.…
Hello 3 am. We meet again. I can’t remember the last time I slept fully and peacefully without seeing you and getting stuck here in these lonely early hours, while the rest of the world sleeps. I’m not sure what wakes me, maybe it’s a dream. Or maybe my brain is just more active at this time of the morning, when everyone else is still sleeping and the quiet space gives me time for the anxieties and worries to creep in. I am blessed with a good sleeper. My almost…
Today we had “Back to School Night” and I was nervous all week thinking about it. Every year when my oldest has a new teacher, I hope and pray that they are kind, understanding, and teach the other students about inclusion and things that make us different…and that its okay. We walked up to the list for 2nd grade, I ran my finger down the list to find his name, and we proceeded down the hall to her room. Max was making loud noises, he held my hand, he has…
I noticed the little girl right away. 7 or 8 maybe. She was sitting in a chair, on an iPad. Quietly. She had curls. Blonde ones. She was stunning really. I was waiting for my son and impatient. I had a million things to do and lately it felt like I was spending a lot of time in waiting rooms. I heard it before I saw it. The sounds. Like an animal. The iPad hit the table. The girl sprung out of her seat, ran and dived onto the little…
I’ve been on this journey with my boys for 18 years now and after a while, you just get sick of hearing yourself complain. I’m sick of being the Debbie Downer when someone asks how our weekend was. No one wants to hang with “doom and gloom chick”. Much like Autism doesn’t just “go away” at 10, the misunderstandings and judgment doesn’t either. I am a mother of two young men on the spectrum. One of which is 17 years old, with Severe Autism. He is somewhat verbal but unable…
