Posts Tagged ‘special needs mama’
The Parenting Bar
I was a less than great mom last night. I had all four kids alone, from newborn to toddler to an emotional 8 year old to Cooper and it was a lot to handle. There was a lot of screaming. There was water play when there wasn’t supposed to be water play. And then wet clothes on the floor. And sand. I yelled. I don’t usually yell. But I did.There was talking back. And throwing. So much throwing. There was ‘mommy will you play with me.’ And a lot of…
Read MoreThe Special Mother
Did you ever wonder how mothers of disabled children were chosen? Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. “This one gets a daughter. The Patron saint will be Cecelia” “This one gets twins. The Patron saint will be Matthew” “This one gets a son. The Patron saint…..give her Gerard. He’s used to profanity” Finally He passes a name to an angel and smiles. “Give her…
Read MoreTo the Medical Mama: I now Understand
How many times have I watched from a distance, mostly from behind a screen, as special needs parents spent weeks or even months in the hospital with their child, and I’ve thought, “gosh, that’s got to be hard.” I had a limited understanding of how difficult an ordeal like that could be because my 16 year old son Luke has been extremely healthy for many years; healthy until last year when we spent 6 weeks in ICU with him after his shunt malfunctioned and then became infected after a new…
Read MoreLearning How to Dance in the Rain
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…
Read MoreDear Tired Special Needs Mom
I know how you feel. I feel it too. It can be exhausting caring for your child with special needs. Every mom feels worn down, but this “tired” feeling you and I feel is much greater. This word “tired” for us means way more than the lack of sleep. Every minute of every day there is worry. Worry that your child’s school might call you again. We worry about when the next meltdown will occur and what set it off. We worry about how our child is feeling because they…
Read MoreLight at the End of the Tunnel
The comment read, ‘for some families, there is no light at the end of the tunnel.’ I thought about it all night. And when my toddler woke up at midnight for a hug, and then again while I drank my coffee and watched the news. I thought back to our hardest days when there was no apparent light at the end of the tunnel. Our autistic son didn’t sleep longer than 45 minutes at a time and we started every day at 3 am. We lived in this place of…
Read MoreThe Days Are Long
We have been all together since Thursday at 4:30 pm. Well, actually since March, but whose keeping track. We’ve mostly been inside and haven’t really left the house. It’s cold outside so walks aren’t ideal. Coops doesn’t like to be cold and he definitely considers 24 degrees to be cold. Car rides are still a challenge for our family of five (mostly for the dad!) so we avoid those. Little people are very loud in cars. Dad doesn’t like loud and mom gets anxious because of it. And there is…
Read MoreCan You Feel My Vibe?
My son, who was diagnosed with Autism Spectrum Disorder (ASD), was also diagnosed with Sensory Processing Disorder (SPD). As part of his profile, he has a heightened sensitivity to light, sound and the energy of his environment. To navigate loud places, or areas that have unexpected sounds, has been challenging. We found bright lights could be over stimulating, making movie theatres, fairs and arcades unpredictable. He would become so revved up, literally bouncing from one thing to another, and his impulse control was non-existent. He also became disregulated by itchy…
Read MoreIt’s My Story to Tell
Don’t tell me it’s not severe When it’s MY story to tell. Don’t tell me it’s not severe When I daily live a version of hell Don’t tell me it’s not severe When all you got is something to sell Don’t tell me it’s not severe When there are holes where he fell Don’t tell me it’s not severe When the curve dips low on the Herrnstein bell Maybe the word is harsh? Or profound or extreme? Critical or grave? Or perhaps just plain mean? Do those options please you?…
Read MoreA Letter to the Mama Who Gets It
How would it feel to meet someone who knew every part of your story, before you told them? How would it feel to meet someone who lived your story, when all along you thought you were the only one? How would it feel to meet an old friend, for the very first time? You and I, we are the same. We learned early on that the journey of a special needs parent wouldbe a lonely one. We each have wonderful friends that choose to loveour children. We have families that…
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