One night I was sitting on the floor near my son as he rolled around chewing on a book, and I realized the rest of my family was laughing and having fun at the kitchen table. It was the odd moment where my life sort of flashed by, and I realized I always was the one to step back to “do the right thing” so others could enjoy themselves. I was the one who left early to get a child
What kind of friend am I? I am always busier these days. I have children, so I can’t do anything for myself during “normal” hours. I’ve moved three time zones from one set of friends, two from the next, and I somehow need to make new friends where I live now in the middle of a pandemic. I don’t want to be a bad friend, but the deck is stacked pretty high. I am busy, stressed out, my life consists
I am not going to sugar coat it. No one in this world loves my son more than me. No one in this world gets hurt by my son more than me. He pulls my hair, sometimes clumps in his hand. He kicks me, punches, and throws his body with no care forcing me to strain my muscles to the limits while also covering me in bruises. But the thing he does that has caused me the most pain and
When we got the diagnosis of Phelan-McDermid Syndrome for my son, we were shocked. Our hearts sank, the mourning period began, and we realized that every expectation we had for our son was gone. As if overnight, all I could see was a never-ending list of therapies, doctors’ appointments, paperwork, and realizing it would never end. It felt defeating as a horrible battle between my brain and my heart began. So overcome with grief, I could not see clearly at
The best advice is the advice you want to share. Let me pass on to you what someone said to me once. Someone said, “you got this, momma. Trust your momma gut!” I don’t think I was even barely a mother at that point. I, like so many other parents, was looking around for help to a problem. Let me tell you why trusting your gut is the best advice you can be given, even when you feel they aren’t
Something shameful to admit as a parent is when you feel that you have given up because you are supposed to be the hopeful fighter, and advocate, while also determined but strong and tender. The reality is much more sinister and painful since there are days when surviving is all you can do. At least that is how it feels for me. There are moments when I feel so beaten down that I wonder why we even do this. It
When I heard the word “advocate” for the first time, I assumed it was very political. I am not political, I reasoned, so therefore I couldn’t be an advocate. Yes, I vote–but running for office is not in my future (although I have learned never to say never). Little did I know that being an advocate was not limited to politics. It is so much more. It is giving a voice to the voiceless, or those who are barely heard.
Recently I read a quick read called, “10 Things That Would Make Special Needs Parent Cringe If You Knew.” I wanted to know what parents of neurotypical children would think I would be upset if they knew, and the tagline pulled me in. It was catchy, but did it reflect me? I want to learn from them As I read through the list, I couldn’t help but feel I needed to share my opinions on the topic of jealousy. I
Typical, adjective, having the distinctive qualities of a particular type of person or thing. Oxford Dictionary I use this term a lot, as many other people do when referring to the general public. I probably use it too much when I think about “if only.” I know some people do not like this term, and I don’t blame them, I don’t either. I still daydream about “if only” Some days it’s just as simple as looking at my son. His
Dangerously Mobile – One who can move their body, but has limited awareness of the implications and boundaries of their movements. Think about it like this. Imagine you are on a boat. The boat is moving. It’s moving fast. You are trying to gain your balance and walk from one end to the other, but the waves are unpredictable, and it feels as though the ground is always in motion – because it is. Slowly you are making your way,
