Posts Tagged ‘caregiver’

About a year ago, my daughter was invited to her first school birthday party since the pandemic.  It was a relief but my heart also skipped a beat. I had feared not being invited for so long and kept hoping if it did happen she wouldn’t notice.  I was nervous but she wanted to go. She was in second grade and still in a general education class at the time. This was going to be a party filled with typical kids and their parents.  I was on edge the entire…

Five days a week we rush out the door. There’s a lot of yelling, some giggles, and usually a sigh of relief when we see the bus coming down the street. Five days a week we put our non verbal son on the bus and we trust with everything that we have that he will be well taken care of, loved, and included. In May during field day Whit’s para of almost two years told us she was leaving. They may have had to sneak me out the back wearing…

My son Stalen is seven, autistic and non-speaking. He was diagnosed when he was 21 months old. He has a feeding tube and an ileostomy.  I’m sharing my hard here as a parent to a child with complex needs but I know that it is hardest of all on him. He lives it every single day. HARD. It’s one word that brings about so many judgments. It highlights the challenges, struggles and encompasses all the feelings. From the moment I stepped foot in the autism world with my son I…

I talk about many aspects of my son’s and our lives, but I don’t talk about the rest of his family as much as I should. On average there are 10 different people, including ourselves, coming and going in my home in a week. They’ve become family because they are interwoven into my child’s life and my own.  They walk into my home as they would their own. Sometimes they know where things are better than I do. Ok, usually. Like that mini screwdriver. They know to go into the…

I am a mom. I am a special needs mom. I am a wife. A sister. A daughter. An employee. A friend. An advocate. But who am I? Really? Strip away the titles and what is left? What do I enjoy doing when I have alone time? What makes me feel good about myself? What do I feel best wearing? What snacks or food do I prefer? The realization that I don’t know any of this anymore hit me extremely hard recently. I feel lost. Being a parent your life…

Harper was diagnosed with Autism at age two and we were told by doctors and therapists that keeping a routine would be best to help her learn and succeed.  That routine has become so important to Harper.  She has a memory like a trap and it’s not just the daily routine that she craves but also the annual routines. It is fall and when the leaves start to change and the weather starts to get cooler she knows it is time for the pumpkin farm.   It has been part of…

One of the biggest fears I have as our eight year old son, Sully, gets older is that people will look into his big green eyes and think that he is violent and that they should be afraid of him.  Take a moment and think how that would feel as a parent.  You see our son has severe ADHD, Oppositional Defiant Disorder (ODD), Sensory Processing Disorder (SPD) and High Functioning Autism.  Have we feared he may harm himself or others in our family not meaning to? As much as it…

About two weeks ago, we were driving home from somewhere, and Benson realized that his birthday is quickly approaching. His first question was, “Where should I have my party?” I answered by asking where did he think would be a good place for a party? He thought on it and suggested a local trampoline park and and then suggested that it be a Minecraft party. I tentatively said ok. Then I started doing the thing every autism parent knows all too well…the strategizing, the figuring out how to adapt or…