Tuesday, March 13, 2012

Raised by a Special Needs Mom



Welcome to the March 2012 Carnival of Natural Parenting: Parenting With Special Needs


This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Hobo Mama and Code Name: Mama. This month our participants have shared how we parent despite and because of challenges thrown our way. Please read to the end to find a list of links to the other carnival participants.





Someone inspired me to take a different approach to this topic. I'm sure there are plenty of posts about having children with special needs. I even have a son with special needs myself. I'd like to share some things about being raised by a single mother that was handicapped.

Shirley ~ MomMom hated this photo of her as a girl in a hospital trying to blow bubbles. I have always adored it. I know those were bad times, but this picture has always made me smile.

My mother got polio as a young child. It effected her lungs as well as her bones. Her feet stayed very tiny throughout her life. Her lungs were weak. She spent part of her youth in an iron lung. Remember being told to ask your parents where they were when they heard JFK had been shot? My mother was in a hospital bed in her living room.

Shirley ~ MomShe spent far too much time in hospitals for only one lifetime. But wasn't she gorgeous?

Our situation lead to some special circumstances. For instance, my mother couldn't spank my brother and I because we could always get away from her. Back then (late seventies / early eighties), apartment complexes that were handicap accessible did not allow children. I think this was because most of their tenants were elderly, not parents. This made it difficult for her to find homes, but we still managed to move every year.

As a small child, I have fond memories of helping slide jeans over my mother's braces each day. I remember laying my head in her lap to have her change my earrings and how uncomfortable her leg braces were on my head. I stepped into liquor stores as a child to request assistance at the car because it would have taken much longer (and more effort) for my mother to go inside. I helped with a lot of errands.

I needed to know from a young age how to call 9-1-1. My mother walked using leg braces and crutches. She would occasionally fall down and get hurt. I rode in the front seat of an ambulance a few times. Then there was the time she broke her arm...

It was just my mom and me. She couldn't really function with only one arm. She had a bedside commode (toilet to you young whippersnappers). With only two of us in the house, who do you think had to empty it?

My mother later (during my adulthood) expressed how bad she felt for putting me in that position. No child should have to clean up after their parent in that way. I've had an aversion to adult feces ever since! Not that you generally have to encounter another adult's feces, but the thoughts / aversion are there!

As a preteen, we attended church regularly. I remember seeing children staring at my mother. Its what children do, they didn't understand and were fascinated. I did understand, but couldn't relate to their need to stare. I shot them dramatically hateful glares. My mother was more understanding, but she'd been this way her entire life.

Speaking of churches, there for a while we were going to a different church each week - trying to find the right fit. We went to one where they decided that the entire congregation should lay hands on my mother to heal her. Everyone that could reach her touched her. It was a terrifying experience for me.

Handicap bathroom stalls weren't available everywhere then. And even when they were, they weren't always set up so that my mother could get up on her own. Even when I was fairly small, I learned to help pull my mom back up to a standing position. I was absolutely her little helper.

Free Freshly Painted Handicap Wheelchair Parking Sign in Parking Lot Creative CommonsPhoto Credit: D Sharon Pruitt

I grew up getting irritated with people that weren't handicapped, but took handicapped parking spaces. I still get defensive when people comment that it is no big deal or they see a parking pass but don't see the handicap. It might not be something you can see. My mother once walked (on braces and crutches) out to her car to find a police officer writing her a ticket for parking in a handicap space. She had forgotten to put her visor down (the parking passes used to go over your visor). She still got the ticket, despite her standing right there, obviously handicapped.

I have a lot of childhood memories that are likely different than "typical" childhood experiences. How has someone with special needs effected your life?


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Carnival of Natural Parenting -- Hobo Mama and Code Name: MamaVisit Hobo Mama and Code Name: Mama to find out how you can participate in the next Carnival of Natural Parenting!

Please take time to read the submissions by the other carnival participants:

  • What is 'wrong' with you' The challenge of raising a spirited child — Tara at MUMmedia discusses the challenges of raising a child who is 'more' intense, stubborn, and strong willed than your average child.
  • Tips for Parenting a Child With Special Medical Needs — Jorje of Momma Jorje shares her shortlist of tips she's learned in parenting a newborn with special medical needs in a guest post at Becoming Crunchy.
  • Parenting the Perfectionist Child — Mandy at Living Peacefully with Children discusses that as parents of gifted children, we are in the unique position to help them develop the positive aspects of their perfectionism.
  • Montessori-Inspired Special Needs Support — Deb Chitwood at Living Montessori Now gives a list of websites and blogs with Montessori-inspired special-needs information and activities.
  • Accommodating Others' Food Allergies — Ever wonder how to handle another family's food allergies or whether you should just skip the play date altogether? At Code Name: Mama, Dionna's friend Kellie (whose family has a host of allergies) shares how grateful she is when friends welcome them, as well as a list of easy snacks you can consider.
  • Only make promises you can keep — Growing up the child of a parent with a chronic illness left a lasting impact on Laura of A Pug in the Kitchen and what she is willing to promise for the future.
  • A Mom and Her Son — Jen at Our Muddy Boots was fortunate to work with a wonderful family for several summers, seeing the mother of this autistic son be his advocate, but not in the ways she thought.
  • Guest Post from Maya at Musings of A Marfan Mom — Zoie at TouchstoneZ is honored to share a guest post from Maya, who writes about effective tools she has found as a parent of two very special boys.
  • You Don't Have to Be a Rock — Rachael at The Variegated Life finds steadiness in allowing herself to cry.
  • When Special Needs Looks "Normal" — Amy at Anktangle writes about her experience with mothering a son who has Sensory Processing Disorder. She offers some tips (for strangers, friends, and loved ones) on how to best support a family dealing with this particular neurological challenge.
  • Special Needs: Limitation or Liberation? — Melissa of White Noise describes the beauty in children with special needs.
  • How I Learned It'll Be Okay — Ashley at Domestic Chaos reflects on what she learned while nannying for a boy with verbal delays.
  • Attachment Parenting and Depression — Shannon at The Artful Mama discusses how attachment parenting has helped her get a clearer image of herself as a parent and of her depression.
  • On invisible special needs & compassion — Lauren at Hobo Mama points out that even if we can't see a special need, it doesn't mean it's not there.
  • Thoughts on Parenting Twins — Kristin at Intrepid Murmurings shares her approach to parenting twins.
  • ABCs of Breastfeeding in the NICU — Jona at Breastfeeding Twins offers tips for establishing breastfeeding in the alphabet soup of the NICU.
  • Life With Michael - A Mother's Experience of Life With Aspergers Disorder — At Diary of a First Child, Luschka's sister-in-law Nicky shares her experience as mother to a child on the Autism Spectrum. It is filled with a mother's love and devotion to her child as an individual, not a label.
  • Raised by a Special Needs MomMomma Jorje shares what it was like growing up as the daughter of a mother with a handicap.
  • Becoming a Special Needs Mom — Ellen at These Broken Vases shares about becoming the mother of a child with Down syndrome
  • She Said It Was "Vital" — Alicia of Lactation Narration (and My Baby Sweets) discusses the conflict she felt when trying to decide whether therapy was necessary for her daughter.

21 comments:

  1. Oh, I so greatly enjoyed reading your post. You have such vivid memories of your childhood. I think your mother was so brave and courageous to have children at that time when there was still a lack of understanding for people with disabilities. She must have been so proud of you and your brother. Thanks for writing this. It was refreshing! I am a part of this Carnival, too. Julie at www.whatiwouldtellyou.com

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    1. Attitudes have come a LONG way since then... and yet there is still a way to go.

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  2. That experience of the church trying to lay hands on your mother to heal her sounds terrifying! That would have totally freaked me out for sure. How did they react when it didn't "work"?

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    1. However they responded was not nearly as memorable. Besides, I can't imagine they were shocked to fail to heal her. She'd had polio her entire life. Or perhaps they felt that their efforts would take some time to kick in.

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  3. i really enjoyed reading about your memories about your mom... i too did my share of shooting dramatically hateful glares when i was a teenager and we would go to the grocery store.. and even when i was an adult we would go shopping even adults would look i would glare at them...children dont understand...

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    1. Children really don't understand and my mother gently chastised me for glaring. It wasn't truly my place, it was her handicap not mine. And she was very understanding about the curiosity of children.

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  4. Wow - Thanks for sharing this perspective! It is definitely one that I have not read much about or experienced in my own life.

    And yes - your mom was gorgeous! Who looks that good in a hospital bed? ;-)

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    1. Thanks! I know, right?! But I guess if you're a teenage girl and stuck in a hospital bed... I can only imagine you might put more effort into your looks than an adult might... but then she was just naturally beautiful. In one of my posts in tribute to her, I include a photo that I always thought looked like a movie star when I was growing up. :)

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  5. Your mother really was quite lovely, and how amazing you were to be so strong when you were young. Thanks for sharing you story with us. <3

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  6. What an absolutely wonderful post! I often wonder what life will be like if my daughter with CP ever becomes a mother. I think you could write an entire series on what life was like for you, I absolutely loved it!

    Your experience with the church is one that I think is so important to share. My husband and I have a passion to see things changing at churches where disability becomes a natural part of life (after all 25% of the American population has a disability, our churches should reflect that too!)

    In general, people are afraid to that which is not familiar. The Bible is full of examples of healing, and it is natural for us to want to see people healed. However, disability in a church is beautiful. The freedom, honesty, and gifts that are offered cannot be found outside of disability. (I can imagine that in fact your experience was quite scary, I wonder how your mom felt about this?)

    If you are up for it, I would love to have you do a guest post about your experience. We can talk about this more if you are interested.

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    1. Beautifully put about the church...

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    2. I love to guest post, but I don't remember much more about it than what I said. We were going to different churches every weekend. This one was obviously not a good fit for us.

      Actually, I recall my mother not liking it, but not being unfamiliar with the situation. Considering the time in which she grew up, she'd had people lay hands on her in the past. I'm not sure how she balanced her faith with that. In the end, she didn't consider herself a Christian.

      If I think I can come up with enough for an entire post, I'll let you know!

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  7. I enjoyed reading this & could totally relate. My mother has battled a terrible chronic back problem since I was in 4th grade. I remember having to empty the bedside commode each day when I got home from school and then rub her legs and feet to keep her from getting bedsores.

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  8. "We went to one where they decided that the entire congregation should lay hands on my mother to heal her. Everyone that could reach her touched her. It was a terrifying experience for me." Sigh. Story of my childhood... I'm so glad that you can relate!

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  9. Wow, Jorje - what a strong young woman you were (and are)! I'd love to hear how you feel that specifically impacted your parenting style.

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  10. What a beautiful post, and what an incredible job you had to do throughout your young life.

    My best friend's mother also had polio at a young age. While it didn't affect her lungs, it did cause some development problems - she was always a tiny woman, and in 40s and 50s she underwent numerous back surgeries that left her nearly helpless for weeks and months at a time. As a divorcee, her daughter was her only help during those long months and I'm sure she had a lot of the same experiences you did. I'm so proud of what she did for her mom and it clearly influenced the kind of woman she became. She reminds me a lot of you, to be honest.

    (And as a happy P.S., her mom lives independently in a cabin in the woods now, just as she always dreamed she would. She has some support of her neighbors and she is safe and happy).

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    1. My mother actually had a steel rod in her back and a screw in her shoulder - for my entire life. Her x-rays were interesting, to say the least!

      That is wonderful that she is living her dream life!

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  11. I this an amazing post! You and your mother are amazing people and I feel honored to know you.

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  12. I love those photos of your mom! Her story is so interesting, and now I get to hear your perspective growing up with her, which was fascinating. Thanks so much for sharing it for the carnival! Your mom was really lucky to have you, but vice versa, too, I'm sure.

    This is random, but you know how I hate to leave a short comment (ha ha), when you mention about cleaning up adult feces, my mom and dad recently had to go through that with her elderly father. I was thinking at the time how hard that must have been for her and whoever else was helping out, yet how special that she could do something so menial and yet loving for her father. I don't know — it's gross and probably embarrassed both of them, and yet … someone had to do it, and I'm glad she was there for him, you know? So I'm glad you were there for your mother, too. I'm sorry she's not with you anymore. She really seems like a special lady.

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  13. I grew up with my Mom having MS so some of the things you said where very familiar. Thank you for sharing!!

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  14. Thank you for sharing this, Jorje. Taking care of your mother as a child must've been rough at times, but I can see you're a strong woman because of it. I'm sorry she's no longer here, I'm sure she would have loved to watch Sasha and Spencer grow up with such a loving family. And she really was beautiful! <3

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