Posts Tagged ‘Special Needs Parenting’
Today His Anxiety Is…
My son has anxiety. Real, serious, debilitating anxiety. Before Cooper, I didn’t know that an eight year old could have anxiety. I didn’t think they had anything to worry about. I mean…he’s fed. He’s happy, loved, clean, cared for, safe. He lacks or needs for nothing. And yet, on days like today, he can’t function. He can’t hold it together. He can’t turn the page. He can’t build a bridge. He can’t move on. He can’t think about anything else. It’s like a video in his brain is paused. A…
Read MoreTo My Husband, My Daughter’s Advocate
Saying that I am ‘thankful’ for you, my husband, doesn’t quite feel right. I am thankful, but I am much, much more. I am indebted. I am awed. I am overcome. You are our most valuable resource. Shortly after receiving our daughter’s autism diagnosis, without much discussion and no hesitation, you agreed to quit your job. You said, “I want to do whatever is best for Stella.” You never wavered. I’m sure that staying home with her and driving her back and forth to therapies all day, six days per…
Read MoreIt’s Not Always Easy
Hear me out on this one.. I share our story because so often I receive messages from fellow special needs parents that their hearts are broken. All the time it’s questions, remarks on the ‘how’ and ‘why’ do we make parenting a child with significant needs look easy. I always step back and take a breath. It’s not easy. We literally spend all of our time working to give our son Jake the best quality of life for HIM. And to be honest, that does not always equal OUR best…
Read MoreI’m So Sorry
I was in denial in the beginning of my autism journey. Not my son. He’s fine. My wife Kristen knew something was off though. As time went on my denial became a hard reality. Our son Cameron was diagnosed with Autism at two years old. He is nonverbal. It was a tough pill to swallow. All my life I felt as if I was destined to be a dad. There was something underlying involved. The idea followed me throughout my life. The reason was because god equipped me with everything I…
Read MoreOnce Again, I Go Numb
A few days ago I received some validation. Validation I didn’t want to receive. And as I processed it, I realized how numb I must really be to all the emotions that go into special needs parenting. Every time I chat with a 7 year old boy or listen to a 2 year old speak in full sentences. Or watch my 5 year old growing up, achieving every milestone and becoming more independent. Or when my autistic son yells at me and melts down repeatedly. I must be numb. And…
Read MoreWe’d Become What I Was Most Afraid Of….
When my son was diagnosed with autism over four years ago, I remember not being able to picture him as a teen. And not one person in my life, not doctors, not therapists, could tell me what the future held. The unknown is very, very hard. I think it’s harder than knowing. I so badly needed a glimpse of the future. I needed to know what nonverbal looked like at age 15. Or 20. But I was scared too. I am big enough to admit that I wasn’t ready to…
Read MoreIf I Had It My Way
I’m someone who copes very poorly with the unknown. I like to KNOW what is going on and especially what is going to happen. This is true to a much lesser extent with having MS (whose hallmark, as we know, is unpredictability) but I suspect this is because I’ve been doing so very well for the more than seven years since my diagnosis—it’s something that has faded into the distant background of my life as the more time passes without incident. But ask anyone who knows me and they’ll tell you that…
Read MoreEvolving as a Special Needs Parent
When my son was first diagnosed with autism I struggled to even say it out loud. I felt awful saying the words, ‘my son has autism.’ When I said them, I felt like I was betraying him. Or making it real. Then, once I was ready to talk about it, I quite literally had no one to talk with. None of the other parents in my group had autistic children. They would be talking about sports and education while my life was therapy, doctors and sleep deprivation. I realized quickly…
Read MoreThe Life He May Never Get To Live
My son, Rowan, will be two in January. At four months old Rowan was diagnosed with Tuberous Sclerosis, a 1/6000, rare, genetic disease that causes epilepsy, tumors to grow in all major organs and development delays including autism. My love for him is bigger than life itself. I want nothing but greatness for him, for him to flourish in every way imaginable. And here it is ladies and gentlemen…the “but” we’ve been waiting for: But… But I hurt FOR him. I cry FOR him. I think about the life he…
Read MoreNothing is Normal About Today
I spent this Thanksgiving in Baltimore, split from those I love. Instead I spent it with my son and with families that feel the same aching, haunting pain that I do. We sit as strangers, yet we know each others stories better than our own relatives. For at today’s table, we are reminded of that, as our chairs remain vacant at the homes we have left behind. As life continues stirring around us with no one really understanding what we feel. Expect these strangers I celebrate with today; they do,…
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