Guest Post
A Love Letter to Our First Advocate
My son was diagnosed with Autism at the age of 3. But I can honestly say that if it hadn’t been for his Speech Therapist at the time, he still may not have a diagnosis. That’s how far into the black hole of denial I was. The funny thing about denial is that no one can pull you out. You have to do it own your own, but there are people that can be that light you reach for. And my son’s first speech therapist was that light for me. …
Read MoreThe Woman Who Showed Me How To Get Through The Hard
Genevieve Ann. There’s a lot that I can say about her. She’s fierce. She makes me laugh. I know if I call her I’ll feel better. I don’t dare miss a Thursday call from her. It’s been our thing since I was little. There was that one time in college where she called me 3x’s upset that I didn’t call her because it’s Thursday. Then she realized it was Wednesday. She and my Papa made quite a team. I remember I wanted my marriage with whoever I married to be…
Read MoreMy Son, You are Mine and I am Yours
To my Johnny, I can see it now; The chaos, the fear, the love, the moment you entered the world. It was 10:31pm and the room was full. Nurses and staff running about, Gad, Grammy and your Aunt cheering with joy, machines beeping and a baby crying. In a strangely unceremonious way you were laid down on my chest facing away from me, curled up in the only position you had ever known. I remember trying to ask if I could see your face and it going unheard. I felt…
Read MoreTo My Daughter’s Birth Mom
Always and in so many silly ways, we love you. Through the remarkably challenging stuff and each heart warming moment, I think of you and I love you. In struggle and in triumph, her dad and I stick to the promises we made with you, six years ago today. When Seeley notices her remarkable hair, she thanks you. When she finds an eyelash and doesn’t want to wish for a pet jellyfish, she sometimes sends you her extra wishes. When she catches a fall on her big biscuits, she screams…
Read MoreA Love Letter to a Fellow Autism Mom
The love language for a special needs parent to feel seen, accepted, and understood is as simple as a head nod, and a “me too” on a zoom call or a quick chat on the phone. Or maybe even in the grocery store where your child is having a hard time. If you’ve ever been that person for another special needs mom, you’ve changed their life, you’ve made them feel seen, and they thank you for it. Thank you for sharing your story of walking through the hard, so that…
Read MoreAcceptance Is Not About Resignation
The special needs “warrior mother” is a well-known figure. She’s the mother that kept pushing, read all the literature, challenged the doctors, demanded services, lobbied congress: in short, she changed the world and then went on Oprah to promote the book. Chances are she’s reading this right now… boy, am I in trouble! Yet how often do we hear of the warrior fathers? Crickets. When I first heard the experts murmur the A word, my defense mechanisms kicked into high gear and I immediately erected a wall of denial around…
Read MoreYou Don’t Have to Earn the Right to Inclusion
Will my daughter ever have a friend? Will other kids see how funny and smart she is even if she never speaks? Will they tease and ignore her? Will they be scared of her? When she gets older, will she join a team or a club? Will she meet a kindred spirit who sees her for all that she is and what she can do, instead of who she isn’t and the things that she can’t? Most parents worry about their kids belonging at some point in their parenting journey,…
Read MoreThere’s Nothing ‘High Functioning’ About It
My son Daniel has been challenging since the beginning. He is strong-willed with a big personality and has even bigger feelings. He cried all the time as a baby. I attributed his big emotions back then to him being in pain. He had a cast on his leg the first few months of his life due to his club foot. It never occurred to me that something else was going on. I assumed because he talked and walked before his siblings that he was a normal kid. I wanted and…
Read MoreDon’t Forget About the Special Needs Adults
I’ve heard people refer to special needs kids as the “forgotten ones” during this global pandemic. They cannot do virtual school, computers don’t make sense to them. School is school and home is home. You don’t do home at school, and you definitely don’t do school at home. Toddlers with special needs desperately need the social skills and therapies in order to learn, or in some cases learn how to learn. Older students desperately need vocational and daily living skills in order to be ready to leave school. These things…
Read MoreI am Your Advocate
My Beautiful boys, You are worth the fight. I am sorry life is hard for you. That I have to fight so hard for you. It is not the fight I am sorry for, because I would fight for you everyday of my life willingly and proudly. I am sorry because if I do not fight for you, you would have much less then you have now. If I do not speak up and be your voice, then you would not be heard. If I sit silent you will be…
Read More