Posts Tagged ‘autism mom’
Dear Caregiver
Dear caregiver, A letter of intent is something that was just recently brought to my attention as something that I need to leave for you. Sure, my husband and I are young, but I’m learning after losing a dear friend at twenty-eight, that life can be short. We need to be prepared. A letter of intent is honestly a term I hadn’t heard of before, but the meaning behind it haunts me every single night. How will you know what he needs if I can’t communicate that for him? Sure,…
Read MoreA Special Needs Mama
A special needs mamaIs weary in her soulDay after dayHas taken its toll Years of sleepless nightsMany thankless jobsThe constant demandsAnd heart wrenching sobs The daily needs grind herAlmost to the boneThe exhaustion, the diapers,all of the unknown A son she prayed forWho’s unruly and wildA son she prayed forWho’s misunderstood as a child But wipe her tears she mustAnd get on with the dayFor duty calls againDuty – without pay The phone calls, the letters,She’s desperate for a breakWhy don’t they help?She thinks, for goodness sake She’ll make them…
Read MoreI’ll Be There For You
After my son Harper and I lay down, he always requests a song. He will say “sing!” Then he will name a certain song. Lately, it has been the “Friends” song. Yep, you heard right…the theme song from the show, Friends. He is definitely his Mama’s child! He would prefer the whole song, but I normally just do the chorus. Tonight was different. Tonight, I sang the whole song. As he drifted off to sleep, I caught myself really listening to the words. Tonight, as I lay there singing my…
Read MoreAutism and Religion
I was raised Catholic. I married a Catholic man. We had our wedding in a Catholic church. We are raising our family by the Catholic faith. So when I watched a video where a Catholic priest in New Jersey who demanded a little boy with non-verbal autism leave the church during his sister’s baptism, I felt many things at once. It was a private ceremony. The boy was off to the side, stimming and running and self-regulating. I felt confused, and angry, and sad, and defeated. I felt tired. Hi.…
Read MoreMama, We Are All In This Together
Mama, you are not alone. I have lost sleep too, and I don’t have all the answers. I also don’t have a crystal ball with what this back to school season will look like. My special needs kiddo also can’t wear a mask, and he can’t communicate when he’s feeling sick. He still puts things in his mouth, and he still spends more time than most on the floor. My son misses routine, and teachers, and friends. He also needs to see your mouth and your eyes when learning how…
Read MoreSome Days, I Just Want to be a Mom
When my daughter Sloane was first diagnosed with autism, I jumped both feet in the water trying to get her every resource that was available to her and arm myself with as much knowledge as I could to help her have the best the care, therapy and life that I could provide her. I also wanted to get perspectives from other parents with children with autism and learn from their journeys. And through the years, I continue to seek out advice and read stories from other parents of children with…
Read MoreWhat I Wish I Knew When I First Started Out…
What I wish I knew when I first started out on this path… Early intervention can never hurt your child, it can only help. If your child is just a late talker, great – a little speech can never hurt. Get the evaluation. Pediatricians plays down your concerns, but your instincts are screaming at you. Get the evaluation. Family and friends are gently giving you cues, but you are in denial and yes angry. Get the evaluation. You are afraid of your child being officially labeled, except they are being…
Read MoreOur Life Before Autism
Every night you fall asleep wrapped up in your favorite teddy bear. Tonight, was no different. You snuggled into the bear that is larger than you, wrapped yourself in blankets, and awaited your bedtime stories. We read 3 bedtime stories every night. You usually push for more, but tonight you were fast asleep before I even finished the second book. You do not fall asleep during the stories a lot, but when you do it is always my favorite. I stay a few extra minutes to soak in every ounce…
Read MoreWho Would I Be?
Who would I be without him? I ask myself this question every once in a while. I don’t ask it often, because that could turn into a slippery slope, if you will. Hi. My name is Carrie. My husband Joe and I have five kids. Our second son, Jack, has autism. He has had it since the very day he was born. He is sixteen now. Without autism, I would be carefree. Maybe even spontaneous. Naïve. Unkind. Judgmental. I might know what it’s like to sleep past 5:45 am. That’s…
Read MoreI’ve Been a Primary Caregiver for 30 Years. Here is What I Want you to Know:
Hi, my name is Kelly and I am the mother to an amazing young man named Steven. He was diagnosed with autism at age 2 and later apraxia. He recently turned 30 and is a dynamic, smart, interesting, funny young man. We share our story on Instagram at Growing Up Steven. Being a primary caregiver for the last 30 years has rewarded me with a few things: A panic disorder, depression, anxiety, excessive worry, marriage struggles, and at times, not the mom my kids deserved. I want you to learn…
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