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…
Nearly every day we get a letter, or an email. Some have good news, some carry rejection. Like a version of the infamous Dr. Seuss poem, the messages and envelopes tell a modern-day story of the places you might go. New York, Pennsylvania, Connecticut, Massachusetts. Some schools are in small towns, other sprawl amongst tall buildings and busy sidewalks. Some have large, rambling campuses with extravagant dining halls. Others boast state-of-the art technology, or winning sports teams. All of them are far from home. He sees the return addresses, when…
People always ask me how much my son Coops understands. I think they ask because he’s nonverbal and often it may appear to the untrained eye that he isn’t paying attention or comprehending. My answer is a lot. He understands so much. He is always listening. And when I don’t know the answer…I presume competence and encourage others around us to do the same. There is one thing though that I know he doesn’t understand. He doesn’t understand that his younger brother is growing up and will soon want his…
Today I witnessed a mother’s hardest day. Her daughter’s funeral. She was 14 years old. She died for no reason. It was one of those things that make no sense and makes you wonder why and how and question everything. She is my cousin. The woman. Her dad and my dad are brothers. I did not know her daughter. I need no condolences. And yet I sobbed through the entire funeral. As a mother to three boys, I felt an ache of the emptiness. And the loss. Hers. I thought…
It takes incredible bravery and courage to go out into the world knowing that you will be misunderstood and unable to communicate. This kid, and so many like him, do it every single day. They get a kiss from their mom, walk to the bus holding dad’s hand, and leave their safe place. Think about that. If something happens to him, if someone hurts him, if someone is mean to him, he can’t tell me. And yet he believes and trusts in the good of the world. Every day I…
This too shall pass. There is a saying that is said at one time or another to every parent. This too shall pass. I remember being told those words as I held each of my newborns, exhausted from cluster feeding and lack of sleep. Again during the never ending messes that kids make. During potty training woes and tantrums over blue cups and the wrong shoes. And I guess in most cases it’s true right? The hard moments do pass. Usually. Babies start sleeping. Messes stop. Little humans learn to…
A few holidays ago, a friend and I were chatting, when she said it. ‘That’s so retarded’ in reference to something happening in her life. At first I was floored. I hadn’t heard anyone say that word in I don’t know how long. She wasn’t done though. The story went on. She described a place and people. As I listened to her, waiting to see if she’d notice my face, I thought about how she is an educated woman. She is a kind woman. She is not malicious or evil.…
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…
I do not have autism. I am not autistic. But my son is. And watching and learning from him has been one of the greatest gifts life has given me. He has taught me to slow down. He has taught me to prioritize. He has taught me what is important and what truly matters. He has even shown me the good in this world. And the bad that is out there. This is how he greets every member of our family after school. He doesn’t have words. Just actions and…
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…
