True Story: My mom has an intellectual disability

mom intellectual disability
What would life be like if your mom had an IQ of 62? What if you realized that your mom was different than other moms when you were three years old? Today, Anna is sharing the story of her relationship with her mom and how they’ve connected despite significant odds.


Tell us a bit about yourself! 

Hi! My name is Anna; I’m Midwestern by birth and did a stint in the deep South as a teenager/young adult. In my twenties, I relocated to Venice Beach, California, where I lived my roller-skating dream until I turned 42 last year. I quit my job as a motion picture accountant and have been a full-time traveler now for almost one year. I’m still living the dream and re-configuring my life as a writer and storyteller.

For those of us who don’t know, what does it mean to have an intellectual disability? How is that different that a developmental disability? 

An intellectual disability (ID) encompasses the cognitive part of the more umbrella term of developmental disability, which can include both physical and cognitive disabilities. ID specifically is a disability that occurs before the age of 18 and is characterized by both impaired cognitive functioning (reasoning, learning and problem solving) as well as limitations in adaptive behavior, which covers everyday social and practical skills.

In my mother’s case, she fell out of a moving car when she was five years old and landed on her head. Her IQ is 62, which is officially classified as ‘extremely low’ – a thankfully nicer term used in modern days in place of ‘mentally retarded.’

How did your parents meet?

In the late 60’s, they were neighbors in an apartment building and I think they just hooked up. My mom got pregnant and her family forced her to give the baby up for adoption. Afterward, my mom was (understandably) sad. She found out where my dad lived and would hang out on his porch waiting for him to get home. Eventually, he married her.

I asked my dad once why he had babies with her. He just said, “I guess I felt sorry for her.” My dad had a hard upbringing with an alcoholic mother and he’s always been a really wounded soul too. – Sorry, this story is such a bummer!

At what point did you realize that your mom was different than other mothers? 

I think I was about three. Living with her was sort of dangerous. I remember standing up in the front seat of the car while she was driving, trying to make her pass other cars on the two-lane highway, stamping my foot and yelling, “Pass ‘em, pass ‘em!” She threw a bottle of perfume at a bird that got caught in our house. The bottle smashed against the wall and I was worried that maybe glass had fallen into my baby brother’s crib. Then there was the time she accidentally spilled boiling water on me.

I wasn’t able to put any of these pieces together then, but as I got a little older, I often thought my mom was just silly and sometimes oddly mean. I was definitely confused.

When did you surpass your mom in terms of intelligence? What was life like for you when that happened?

Thankfully, I don’t think I was living with her when I surpassed my mom in intelligence. My family never talked about what was wrong with her . . . there were vague references along the lines of ‘somebody dropped her on her head.’ Around the age of 11 or so, though, I worried that whatever was wrong with her was genetic and maybe something was wrong with me too and maybe that’s why I was really bad at math.

Your parents got divorced when you were eight and you went to live with your dad. How did you feel about leaving your mom?

I don’t remember much, just that my mom re-married a really bad man who also had an intellectual disability. My dad and grandparents didn’t trust her new husband, nor did I, so we didn’t spend much time with them. In some ways, since I’d never had a ‘normal’ mom, I didn’t ever know any normal warm, soft, fuzzy motherly care from her.

But thankfully, I did know what that felt like from my grandmother, my dad’s wonderful step-mother. She totally filled that need for me and I’m very grateful to know what a mother’s unconditional love feels like. And truthfully, in a lot of ways, I think my mother abandoning me was her way of helping me the best she could. But it’s taken a lot of time, effort and soul-searching to come to that conclusion.

On a day-to-day basis, how does your mom’s intellectual disability affect her life? How does it affect your relationship with her? 

First and foremost, since no one talked about her disability when she was growing up, she didn’t get encouragement. Unfortunately, there wasn’t a lot of dialogue, help, compassion or resources back then.

I’ve always known that someday I would have to rescue her. And a couple of years ago, when her husband went to jail yet again for hurting her, that’s exactly what I did. I moved her out of their house, got a restraining order against him, and moved her to a secret location in a group home. She now has advanced dementia and is a LOT lower functioning than the woman I knew 30 years ago.

Has your relationship/experience with your mom affected your feelings about having children of your own?

I don’t know if it’s because of my mother or not, but I’ve never had any desire to have children.

What’s your relationship with your mom like now?

After rescuing her, I called her every day for almost two years to make sure she transitioned to the new home well. We had some good, albeit limited, and sometimes funny and graceful moments. I brought her out to California one Christmas, which really blew my mind, never in a million years did I think I’d have an opportunity like that.

Now that her dementia has progressed, she’s not too good on the phone. She loves Girl Scout cookies, so I make sure she gets some every year. It’s the little things, really.

What have you learned from this that any of us could apply to our lives? 

Because people with intellectual disabilities have impaired social skills, they are at huge risk for poverty, addiction, domestic violence, etc., which sadly, have all been a part of my mom’s life. As a society, we have got to talk about what’s going on with this group of people, encourage them, and help them get the resources they need in order to mitigate some of these problems. My mom is the direct result of what happens when no one talks about this stuff.

When it comes to social services in general, there are way more people who need services than there are services available. But if you keep showing up, and you jump through all of the social service hoops, those wonderful people will absolutely move mountains for you.

My mom is an emotional mirror. If you express frustration with her, she will throw that attitude right back at you. And really, everyone in the whole entire world is like this.

Grace. Through her, I’ve learned how to extend grace.

Thank you so much for sharing this story, Anna. I think this is so, so important to talk about. Do you guys have any questions for her?

P.S. True Story: My son has Down Syndrome

photo credit: London Scout // cc

19 Comments

Lesley S

This was so interesting – thanks so much for sharing! I work in a pediatric rehab facility for children with intellectual and physical delays and disabilities. What you say about the risks for this population regarding poverty, domestic violence, addiction, etc…and our obligation as a society is so important. Frequently the parents of the patients I work with have their own disabilities and I’ve found it’s been so easy for them and their children to fall through the cracks. There’s much work to be done.
I love that you’ve learned to extend grace. What a beautiful, and far too uncommon, ability to have.

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Anna Metcalf

Lesley – thank you for reading. And thank you for your important work with children with disabilities.

There IS much work to be done, that’s why it’s important for me to discuss this personal issue. <3
Anna

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Stephanie

Anna, as always, you know how to tell a story. Thank you for sharing this with us.

For those of you who don’t know Anna in real life, I hope you have a friend JUST LIKE HER for your very own. She is one of a kind. I’ve known her for over thirty years, and I love and adore her. <3

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Anonymous

Thanks for this. I feel I was totally unaware of this as a possibility in someone’s life until I read this–it just hadn’t occurred to me. Thank you for sharing!

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Lainie Liberti

Incredible story. I can’t even imagine how much you had to overcome as a child living in this reality. I admire your openness and candor and willingness to be vulnerable. I know this will help so many people. <3

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Jackie Billingsley

An incredibly brave, raw and realistic portrait of a real life situation that many are afraid to talk about. Thank you Anna for your courage and your desire to help others. Many people, including myself, have one or maybe even two parents with some sort of mental disease or issue that can be utterly confusing and damaging to their children. Your spirit was strong enough to rise above all those challenges and you have gone on to have a wonderfully happy life! I’m so excited to see you enjoying such exciting adventures and for the amazing love that you and your husband have for one another! In the end, truly LOVE is all that matters! That’s what I have for you sweet Anna! Carry on!

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Kay Pattetson

Anna, you amaze me. I love you from the bottom of my heart. I always have thought you and Jimmy we great kids. I miss you a lot.

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Ashley

What a striking, lovely sentiment to end on. I’ve tucked that away and kept it for the future. My sister has a mental illness, and your comment about “throwing frustration” back when it’s expressed toward her is exactly what it’s like with my sister. Grace is truly the most beneficial, if challenging at times, way to approach it.

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Anna Metcalf

Thank you, Ashley. Yes, grace is hard. I view my role with my mom as one of ‘holding the space’ – I imagine that I’m a kindergarten teacher and that I have to keep my voice chirp-y and happy, even when her tone is less than ideal. It’s been a good lesson in how to deal with the world at large. Good luck with your sister and the dynamics therein.

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Beth Hofmann-Davies

Hi, My name is Beth and I’d like to email you privately as I’m dealing with a similar issue with my mom. I have some questions. Would this be alright with you?

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Anonymous

When your young you really do not know how uneducated your mother is. My mother was a good mother as far as caring fir her children, but had no education at all. I do not think her IQ would even at the 60’s level. She always had my dad to tell her what to do and how to do it. She cannot read, write, tell time, so does not know how old she is, forget knowing her address or phone number. I remember her practicing spelling her name when I was small, today over 50 years later she cannot spell her simple name of 5 letters.
She is now almost 80 and I have been caring for her since my father died 15 years ago, she thinks she is smarter than everyone in the household and she also has DM for years and still does not understand her disease or able to take her meds properly. She argues with me about how to take her meds, she lies about everything all the time and she takes things that do not belong to her and will lie about it. She scouts the neighborhood and returns with things that she says she found or someone gave to her, we know she is lying. She also does not respect my husband at all and yells at him for everything. This is what I have to deal with everyday, my brothers have passed and I am the only one left.

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