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Things not to say to a special needs parent.. When we were at the Naval Hospital in the very beginning, Jaxson was about three months old and this older lady strikes up a conversation with me. I know she meant well but when she asked how old he was and I replied with: “Three months old,” she gave me this look.
She thought he was ONE month old, not THREE months old. I know she didn’t KNOW that our baby wasn’t thriving but it made me feel upset nonetheless. At three months old he was barely a little over his birth weight of 6 lbs 10 oz.
When I tell new people about Jaxson’s Dyrk1a Syndrome diagnosis I get a lot of crickets or blank stares. It’s not intentional, I know that, it’s hard to comprehend–I’m even having a hard time learning about it myself.
JUST SO MUCH INFORMATION!
I love that I have been able to find a special tribe that understands this journey of ours along with the outpouring of love and support from our friends and families.
“He’ll get better or he will outgrow it..”
Unfortunately with certain Rare Genetic disorders is that they aren’t going to get better like someone would from an illness or outgrow it like a child outgrows training wheels. Our warriors just learn to LIVE and ADAPT to their different abilities.
Jaxson surprises us every single day with his accomplishments!
“Your child doesn’t look sick or he doesn’t look autistic..”
I know it’s meant to be nice but in all honesty, it really isn’t. When someone tells you about their child and about their diagnosis, please don’t tell them they do not look sick, they look normal, or happy.
A child with different needs do not fit a specific “mold” or “one size fits all” so to speak. Two children can have the same genetic disorder but exhibit different symptoms and features.
“How old is he? …Really he is?”
Like most of the children with Special Needs or Rare Genetic disorder, Jaxson is developmentally delayed and speech delayed. His physical therapist stated that he is at about 8/9 months delayed so that would put him at about a 8/9 month old child level based on that diagnosis.
So yes, he acts and appears to be younger then he is but he is 16 months old. I know this is unintentional like the Naval Hospital incident but it still makes me and others upset when are children are compared to others their age.
“Have you tried changing their diet..?”
Yes. Yes we have. Jaxson has mild dysphagia which makes it difficult to swallow, he has come a long way with Feeding Therapy but it still lingers. Because of his Dyrk1a diagnosis, we aren’t sure if it’s going to be a temporary thing or if it’s going to be long-term. Children with G tubes, NG tubes, etc.
They’re on there for many different reasons, and asking them if changing their diet or have you tried changing your child’s diet isn’t something they want to hear. Like most, they’ve exhausted every possible avenue prior to having their children undergo life saving surgery for a feeding tube.
Related: The Day I’ll Never Forget
“He/She doesn’t act like so and so’s child..”
I have dealt with this a lot lately and nothing is more disheartening or upsetting to hear that your child is anything but “normal.” Please don’t compare differently abled children to other children. We know that our children have different needs and they are doing their best to overcome these challenges.
Why I needed to share things not to say to a Special Needs Parent
It is to let individuals with typical children understand our struggles and how words can be hurtful–even if it is unintentional.
I hope I will be able to help someone else who is struggling for answers.
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