I’m a “Special Needs Mom”.
That sounds really weird to me. For a couple reasons really, but mainly because I sometimes wonder if I “qualify.”
My son is on the Autism spectrum, but is pretty high functioning (like what they used to separate out as Aspergers). With only a small interaction with him, you may not notice anything too odd about him, though those who spend more time with him can pretty readily tell he’s not typical. He gets some services from the public school district, and both at home and at his school there are some things we do differently to help him. But then I look at some of my friends who are also “Special Needs Moms.”
Sue (names are made up, but these are all people I know and call my friends) has a son who is severely autistic – his needs affect basically every part of the family’s life and decisions, and he will always need a caretaker of some sort. Karen’s daughter has hydrocephalus and at age five has had about 20 surgeries, including some pretty major brain surgeries, and struggles with many things that a typical five year old would do without even thinking. It’s hard to tell what she will and won’t be able to do in her life, but again her needs affect so much of her family’s day-to-day activities and decisions. Maura’s daughter struggles with severe anxiety – many daily activities like walking into the school building, eating anywhere but at home, and such things absolutely terrify her. The whole family does many things every day to help this daughter handle some of the simplest activities, and Maura is constantly looking for ways to ease her daughter’s anxiety and keep it from negatively affecting her other kids too much. And Jane has adopted or is fostering several children, including some with severe medical needs. She has had to become very comfortable with feeding tubes, specialty wheelchairs, and a number of other specialty devices and activities most of us wouldn’t have the first clue how to handle. One of her young sons (I think he was about five) recently passed away due to his medical difficulties.
Me? I have to deal with an occasional meeting with teachers and other folks caring for my son. I have to learn to adjust my discipline and teaching to suit what works best for him, and remind him to do things like responding to a friend who says hi. My other kids sometimes have to wait a couple minutes while we deal with his unusual behavior. Is it difficult? Yes, at times, but I’m sure he’ll be able to be independent as an adult, I don’t deal with much in the way of medical interventions (counseling and such occasionally, but not anything more), and I know his life is not at risk from his special needs.
Calling Sue, Karen, Maura, and Jane Special Needs Moms is a little bit of a “well duh!” Putting myself in the same category of Special Needs Mom almost makes me feel like an impostor, or like a kid dressing up in her mom’s clothes.
On the other hand, in my head I know I shouldn’t compare myself or my kid to others. And on the third hand (lol 🙂 ), I’m not a fan of labeling in general, or at least “embracing” labels as a way of defining yourself. And, I mean, it’s more than a little ridiculous to feel inadequate somehow because you’re not in as tough a situation as someone else. But knowing something and feeling it, whether you use the label or not, are very different matters. And, frankly, labels can be helpful in finding the help and resources you need.
So, am I the only one who feels this way? Do you? Or are you on the other end of it, and wish you weren’t reminded of your family’s special needs so often? How do you deal with it, or think about it??
One Reply to “I’m (not enough of) a Special Needs Mom”
You’re definitely not alone. I especially agree with the idea of using labels as a way of finding help and resources.
My eldest son has mild brain damage. He works a full time job, but has slow processing, poor short term memory recall, and the decision-making capabilities of a 12 year old. He’ll probably never live alone. But he’s “not that bad.”
Another son has severe anxiety (I really identified with “Maura” in your post) but medication makes life for him and all of us so much better. So he’s “not that bad.”
Another son has a rare, chronic, and as yet undiagnosed disease that requires a lot of doctors, travel, tests, and expenses that affect the entire family. But again, he’s “not that bad”… I even had a doctor tell me, “well, he could be worse.”
So I don’t know where we fit in. I feel guilty for even wanting help or resources or referrals, because there are so many out there worse than my children. How do you decide when something IS that bad? Or that *I* need help? Don’t they (we) deserve help as much as anyone else? Definitely food for thought for me…. thanks for writing this (and letting me know we’re not alone.)
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