just don’t say it: mom of a child with special Needs.
When Jen talked to me about this post I was (and am) really excited about it. I love the way she talks her wit and am so glad she decided to write a guest post for this series (*cough cough* if you want to write one, let me know!). She is a much loved sister in CathSorority and is wise beyond all telling! Enjoy!
My life changed forever on April 7, 2009 when my son Daniel was born by emergency c-section at 29.5 weeks gestation. I had developed HELLP Syndrome and it was the only way to save both our lives. I spent a week in the hospital recovering and Daniel stayed in the NICU for two months while he finished developing. A year later, he started intensive physical and occupational therapy because of global developmental delays. (Translation: he was delayed in speech, gross motor, and fine motor skills.) Almost two years after that, he was diagnosed as being moderately autistic.
To say that I have experience as the parent of a child with special needs is putting it mildly. 🙂 It has enriched my life immeasurably but it also means that I deal with people who seem to love putting their feet in their mouths, opening them only to switch feet. Here are a few things that you *REALLY* don’t want to say to me if you want to live.
Anything with “autism”, “vaccines”, and “gluten-free diet” in the same sentence.
Contrary to what Jenny McCarthy might say, the famous study connecting vaccines to autism has been disproven. Also, do you really trust the former host of an MTV game show to give you good medical advice??? (Yes, I watched Singled Out when it was on. I am *that* old.) As for the whole “cure autism with a gluten-free diet” thing, it helps *some* kids but not all of them. I also have a kid with texture issues and it’s hard enough to keep weight on him without restricting his diet even more. Is that all? Good. Please go away.
Anything with the word “retarded” in it.
Seriously, it is unbelievably rude to describe anybody as “retarded”. Did your mom teach you any manners at all??? I recommend fleeing right now and doing so in a serpentine fashion.
You need to take care of yourself!
You’re right! I do! How about paying for a qualified sitter and driving me to the nail salon for a mani/pedi? 🙂 After you drive me there, you can go to It’s A Grind and get me an iced vanilla latté with whole milk. Thanks!
Why isn’t Daniel doing _______? My child was doing __________ by that age!”
He marches to the beat of his own drum. Shouldn’t you be fetching me that latté?
Oh… do you need help? (said to me after watching me struggle to get the stroller through a door)
What was your first clue?
You have your hands full!
*shocked expression* You noticed?
Note: I don’t want to make it seem like it’s absolutely awful to have a child with special needs. It is hard at times and there are days when I really wonder why God thought I could handle it. It has, however, made me a better person and I would not trade being his mother for anything in the world. He is worth all the sleepless nights, the calls to Social Security, the fighting over hospital bills, the tears, and everything else. His milestones may take longer to achieve but it is ten times more awesome when he achieves them.
Jen is a pastor’s wife living in northern California with her husband Jon, son Daniel, and four very spoiled cats. She is not quite sure when she lost her mind, but blogging at ::Meditatio:: seems to help. When she isn’t being a mom or herding cats, she reads voraciously and writes murder mysteries. She also loves to crochet and cook but can’t seem to find the time (or the counter space) for either at the moment.
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Beautiful post, Jen! If there’s a way to be joyfully sarcastic and radiate love for God’s hand in your life, you’ve done it! You’re so so so right, he just takes longer to reach his “milestones” and it’s so worth it.
Another thing I’ve heard that bristles in my ears is:
“I bet with enough therapy, we can get him to SNAP out of it!”
This is how he IS.
We find out by November my second son’s diagnosis.
Great post, Jen! I would love if you’d write a post about the most helpful/thoughtful things people have said and/or real ways people can help parents of children with special needs if they want to! Maybe you’ve already written it and I’ve missed it.