It was a year ago this month when my son Nicholas licked ice cream off a spoon. It was the first time he’d eaten anything by mouht in two years. And he actually liked it and wanted more. He has always struggled with anything near his mouth. For a few months following that he showed […]
Category: Autism
My son Nicholas will always have Autism. It won’t end when he turns 18 years old. It does not stop for anything. Autism is hard. It’s complex and unpredictable. It’s hard for our family to go anywhere. We almost always need help. My husband Steve and I take shifts when it comes to mealtime, because […]
Sleep has always been inconsistent for Nicholas. Some nights he’ll sleep through the night, while other nights he wakes up 1 to 3 times during the night. When he does wake up, I usually have to go in his room and help him go back to sleep. Falling asleep isn’t the problem, it’s staying asleep. […]
When I was first approached by a social worker to become a parent Certified Nursing Assistant (CNA) for my son Nicholas, I brushed it off. I didn’t like the idea of getting paid to take care of my son. After all that’s not why I had kids in the first place. But then it was […]
This past winter was hard. Everything was getting to me and it hit me how much we’ve been through. I held my cool for a long time, but I think I finally processed the last 4 years. It’s been draining and exhausting. The kids had the most therapy we’ve experienced. Sometimes I feel so controlled […]
It’s been one year since Nicholas was diagnosed with Autism and a rare genetic mutation called ZNF462. Autism was something we expected, the genetic mutation was not. Both diagnoses left me scared with different emotions, however I also felt a sense of relief. We had answers and could now get him the help he needed. […]
One of the most difficult things about having a child with special needs is knowing what to say when people say hurtful comments. I used to prepare myself with the perfect comebacks if such a situation would arise. However, when that time came, I was speechless. One of the most unthoughtful comments that was said […]
Autism really is a big spectrum. Every person who has autism are completely different from the next. When you’ve met one person with autism, then you’ve met one person with autism. There’s so many different ways that autism affects people. I remember the first time I really understood what autism was for my son Nicholas. […]
When I was eight months old, I had open heart surgery to repair my pulmonary valve that was only 2mm wide open. As a result, sometimes I have shortness of breath. I could possibly have another surgery in the future to replace the valve. Other than that I have no other medical conditions. Thirty years […]
This morning we had Nicholas’s annual IEP meeting at his school. An IEP is an Individualized Education Plan, a document for students in special education that’s designed to meet their educational needs. It’s created by a team (parents, teachers, therapists, etc.) and is reviewed yearly to talk about strengths, weaknesses, and goals. Nicholas has had […]