When You’re in Between Being a Special Needs Mom and a 'Typical' Mom

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I remember exactly where I was the day “it” happened — the first time someone referred to me as a “special needs mom.” I had just walked over to a group of women who were chatting in a semi-circle when one of them casually introduced me to the others. “This is Ali,” she said, “She’s a special needs mom.”

I paused for a moment. My chest tightened. I forced a smile.

Maybe it was the easy way her words seemed to float out into the air around me, or maybe it was the way in which her simple phrase seemed to fill every empty space in that semi-circle. Maybe it was the lack of reaction from the others, or maybe it was the simple fact that hearing those words connected with my name — for the first time — was something I hadn’t prepared myself for.

An uneasy feeling settled in my stomach. I never had envisioned that parenting a child with special needs would define me in the minds of others. There was a lot more to me than being a “special needs mom.” For example, I’m an Aquarius, I like Thai food, I enjoy shopping for sunglasses, I can’t catch a ball to save my life, I hate the way suede feels and I love a good show tune.

I walked away from that experience confused. I wanted to hate what she said, and yet, another part of me desperately clung to her words. As much as I detested the phrase “special needs mom,” I surprisingly found some comfort in it. For the first time since my daughter was born with hypotonia, I almost felt a sense of belonging.

Maybe I had finally found people who could understand me — people who understood the struggle of shopping for shoes that can fit over braces, people who shared my frustrations about wait times for neurology appointments, people who could celebrate with me the “inchstones” in our lives. Maybe I had finally found my “village.”

Slowly, I became accustomed to the introduction, to the conversation, to the title — to being a “special needs mom.”

But that all changed the day a woman insinuated I didn’t belong in the special needs community. “Well, your kid has some struggles,” she stated, “but all kids do. At least your kid walks and talks. She doesn’t really have special needs.”

I didn’t know if her words were meant to be encouraging or exclusionary. My mind raced — almost as fast as my heart — but all words escaped me.

Despite her hypotonia, my daughter functions well in many environments. But her hypotonia is still there. It’s hidden deep inside her muscles, causing her to have trouble walking up and down the steps or keeping up with her peers. It’s the reason she was delayed in all of her gross motor milestones. It’s why her fine motor skills are still a year behind her actual age.

Just because her hypotonia isn’t always readily visible to the untrained eye, it doesn’t mean her hypotonia isn’t there. But does the invisibility of her disability mean we don’t belong? Does the fact her disability is mild in comparison to some children mean that she doesn’t have special needs in other people’s eyes?

I pondered these questions and many more, and I came to one conclusion: Maybe I really don’t belong in just one specific mom circle.

I am a mom in the middle.

A mom of a child without a diagnosis but with delays. A mom with many worries and with little answers. A mom who feared her child may never walk, but who now chases her child in the backyard, through the grocery store and around the house, especially at bedtime. A mom who spends her days at the park playground and her evenings at physical therapy sessions. A mom of a child who appears typical to some and anything but typical to others.

I exist in a sort of limbo — between two worlds, both of which meet my needs and yet, could never really understand what I experience.

I am a mom in the middle, and I know there are other moms like me. Moms who are searching for their place in the murky waters that exist between the typically developing world and the special needs community. Moms who are trying to figure out just where they fit in.

To other moms in the middle, on days when you feel lost, when you think no one really understands what you’re experiencing, when you are left questioning where exactly you belong, please know this: You are not alone. I will always have a spot right by me for you — right in the middle — and everyone is welcome here.

author with her two children at the boardwalk

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She Questioned Our Use of a Handicapped Parking Spot. I Wish I Asked Her This.

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It’s a lot of work to take a little kid to the beach. It’s even more work to take a kid with special needs to the beach. Their added physical, sensory, behavioral and emotional challenges make a beach excursion no small feat. In situations like these — as well as grocery runs and routine doctor appointments — handicapped parking spots make the experience a whole lot more manageable for brave, worn-out parents.

Since becoming a special needs mom two years ago, I’ve heard my fair share of handicapped parking war stories. Still, I wasn’t prepared for my own confrontation.

We were vacationing along the beautiful Carolina shores and opted to use our parking privileges to make our trek through the sand. We wanted to make carrying our 2-year-old with hypotonia a little bit easier. He’s little and still looks like a baby, but his uncoordinated body is challenging to hold for any length of time. We didn’t have his gait trainer or any other special equipment that would very obviously communicate why we were allowed to park in that spot (his gait trainer wouldn’t roll in the sand anyway). The handicapped tag was hanging in the front window.

My husband and I stepped out of the vehicle before the kids. Right away, an older lady, who was probably a nearby resident, walked by and said, “Are you handicapped?”

Now to her credit, she was probably policing the spot for her elderly friends who also had handicapped stickers. And our plates were out-of-state. Handicapped signs are displayed differently depending on which state issued the license.

On the flip side, it’s not OK to assume that just because you’re young and appear able-bodied that you have the right to judge someone’s physical limitations. Also, there were three other available spots.

“No, I’m not handicapped. My son has multiple disabilities.”

“Oh, I’m sorry.”

My writing doesn’t capture the tone of either of us, but I remember her being confrontational, yet sincerely saying “sorry,” and then jumping back to defending her right to ask the question in the first place. She said, “Well, I don’t see a sticker!”

“It’s in the window!” I said, defensively.

The whole interaction left me feeling like I was a little kid in trouble. I felt unworthy of the parking spot. I even started second guessing if we were abusing our handicapped sign. On a deeper level, it was like feeling the effects of diagnosis day all over again.

My sister later told me, “You should have said, ‘Yes, my son is disabled. Would you like to meet him?'” Not in a mean way, but in a sincere way. I wish this were my knee jerk response to people in situations like this. Imagine if I had softly said:

Would you like to meet him? He isn’t walking, but he wants to.

Would you like to meet him? He isn’t eating, but he wants to.

Would you like to meet him? He isn’t talking, but he wants to.

Would you like to meet him? He isn’t exactly easy to take to the beach, but he wants to be here so much. Just watch him giggle as the waves roll over his feet.

The handicapped parking policing experience made my heart feel just a little bit of shame for my son all over again. Like I should try to hide his differences, make do without the exceptions of a parking spot and muscle my way through carrying him even though my back was killing me. And it made me angry, which my husband later pointed out I was taking out on him.

Instead, I could have diffused the anger of our opposing positions. I could have used the opportunity to be proud of my son. I could have given that stranger a chance to meet him up close. I could have better defended his rights as a person. I could have built the bridge between the disabled and the able-bodied.

I wish I could have a do-over. I wish that when she asked me if we were handicapped, I would have said, “Yes. Would you like to meet my son?”

I didn’t that time but next time I will.

The author with her son at the beach. He's dipping his toes in water while she holds him.

The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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Why I'm Trading In My Comfy Slippers for a Diagnosis and High Heels

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20150102_150517 For the last two years, I’ve been at peace with not knowing the reason behind my daughter’s hypotonia.

Without a diagnosis, I’d found the comfort of a Saturday afternoon with nowhere to be — a day perfectly designed for lounging on the couch with a good book, a mug of coffee, slippers and sweatpants.

Yes, I’d found a slippers-and-sweatpants kind of comfort.

But I knew that eventually the doorbell would ring or the coffee would get cold, and I would be forced to leave my comfort behind –maybe momentarily and possibly for good — because life, real life, isn’t always about being comfortable.

Last week, my real life began again — in a small exam room.

The neurologist, sitting across from me, casually mentioned a possible diagnosis, but the look on her face was anything but casual, and I was suddenly anything but comfortable.

As she mentioned her game plan — MRIs and an orthopedic referral —  I slipped out of my comfortable place and closed my good book. “Connective tissue,” she said. “Hypermobility,” she uttered. My coffee went cold.

I realized this potential diagnosis meant I’d have to leave the familiarity of my “no diagnosis couch” that I’ve been enjoying for the last two years.

I felt insecure and worried and unsure.

I longed for my sweatpants and slippers but felt as if I was being forced into heels.

I know I can’t stay in my slippers forever, because as much as a diagnosis doesn’t change the important things — like my love for my daughter — it does play an important role in helping us meet her needs.

I have no choice but to move forward off the couch and away from the book and the coffee and the comfort and thrust myself into a new world — a world with a diagnosis.

And while this world with a diagnosis is different and — at times — uncomfortable, I’m ready to give up my sweatpants and my slippers for a little while and try on something new — because I know that while comfort is beautiful, it can also be limiting. And besides, my legs do look pretty darn good in heels.

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Why I Write About a Word That Spell Check Doesn't Even Recognize

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The other day, as I typed the word “hypotonia” onto a blank page in Microsoft Word, a red line appeared under it — a sign of an error — reminding me that to much of the world, including my computer, the word “hypotonia” has little to no relevance.

young girl sitting outside

Before I had my daughter, Ceci, I knew nothing about hypotonia. No Hypotonia Awareness Month exists, and many children who are hypotonic will eventually be given a more specific and concrete diagnosis.

But for some of us, the word “hypotonia” is all we will ever have, and because of that, hypotonia is very real in my world.

It’s the reason I write.

I write to raise awareness, to teach others that even though my daughter has low muscle tone, it doesn’t mean she is weak.

I write to show others how strong children with hypotonia are. Their muscles may be tired as they battle against gravity, but they always end up the victor.

I write to give hope to other families who are hearing the word “hypotonia” from a doctor for the first time, to remind them that while their child may experience delays, it doesn’t mean there will always be struggles, nor does it mean there will never be amazing successes. There will be inchstones to celebrate and unimaginable joy and happiness.

I write with the goal to heal myself as I journey through the murky waters of this diagnosis. I scribble out my struggles and sadness, and somewhere along the way, I find hope and peace. I’m reminded that hypotonia is a constant lesson in perseverance, determination and faith.

I write to you, from a mother’s heart, knowing that my child is different from yours and fully aware that someday her differences may be noticeable to your own children.

I write because I know there will come a day when I’ll be unable to write anymore — a day when I won’t be around to explain Ceci’s disability to others.

And when that day comes, I write this to ask a favor or two of you: Please accept, encourage and support her. Please tell her how much potential she possesses — how much beauty and good she has to give to the rest of the world.  And above all else, please love her.

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This Is What My Son Taught Me… Without Saying a Single Word

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My son, Brandon, has taught me so much in just three years.

He’s taught me what is means to love unconditionally. He’s given me a glimpse into the love our Heavenly Father feels for us. He’s shown me what it means to love someone so much it hurts, what it feels like when your heart is so full it could actually burst. There’s nothing this child could do that would make me love him less.

He’s taught me selflessness. He’s shown me what it means to give your whole self to another — not to make yourself feel good, look good or for others to notice — but solely for the happiness of that person.

He’s taught me not to pass judgment. People go through struggles and are fighting battles every day.

He’s taught me to keep my priorities in perspective. We can all list our most important priorities, but do we actually live that way? He reminds me of this every day.

He’s taught me nothing if not patience — to have patience in the short term, as well patience in the long term. He’s taught me that I don’t need all the answers right now. He’s helped teach me what it means to be still and to still be moving. He’s taught me to how to not lean on my own understanding.

Because of him, I’m a better person.

He has taught me all of these things without saying a single word.

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This post originally appeared on Ramblings of a Special Mom.

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How I Navigate the Stormy Waters of My Daughter’s Diagnosis

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O06_3437 Though my feet are firmly planted on desert soil, my soul is lost at sea.

Sometimes the ocean of my daughter’s diagnosis is calm. I find myself floating just at the surface, with every newly acquired word or skill she’s mastered like a ray of sunshine on my face. Her accomplishments, big and small, feel like ripples of joy surrounding me. She has this incredible joyful nature. She’s almost always happy, and she spreads her happiness around to everyone she comes in contact with. It’s beautiful to see how she lights up the world around her. I bask in her sunny disposition, but then out of nowhere I begin to drown again.

I never really know the cause of the storms. Sometimes it’s just seeing the gap grow between her and her similarly aged friends. Sometimes it’s a phone call from a specialist, sometimes it’s making a phone call to a specialist. Sometimes it’s nothing. Sometimes the waves just suddenly appear, the sky turns black, and I fall below the surface again. My lungs fill with the icy waters of grief, and I can’t breathe as the weight of my daughter’s condition crushes me. I plummet toward the bottom.

It wasn’t like that at first. Her diagnosis came in waves, and I was just getting my feet wet when the real diagnosis came. My daughter was first diagnosed with “delays,” but that didn’t seem too bad. We just need to do some speech therapy and we’ll get back on track. We’ll get her caught up. We can do this! She doesn’t have too far to go.

After her MRI, we learned she has a structural brain abnormality, coordination delays, speech delays, and she will probably have epilepsy. It’s OK. We’ve got this. Her neurologist impressed upon me the importance of early intervention. Thankfully, she’s neurologically functional, so with enough work and intervention, she has a chance for a good life — maybe even a “normal” life. I stood on the shore and saw a beacon of hope far out in the distance. I made my checklist of things to do to get her to the other side of her condition, the side where we can hold on to the notion of the child we thought we had. I dove in headfirst and swam hard and fast, accomplishing everything that needed to be done for her. Therapists, check. Specialists, check. Keep swimming. Evaluations, check. Keep going. Almost there. Follow-ups check. You’re done! But I had not arrived. I didn’t even realize I’d been swept out to the middle of the ocean, and I was exhausted. Spent. I cannot go any further. 

Her therapies are like anchors in my week. 9 a.m. Wednesday occupational therapy, 10 a.m Wednesday speech therapy, 12 p.m. Thursday physical therapy, 9 a.m. Saturday Hippotherapy. 7:45-10:15 Monday, Tuesday, Thursday, Friday special needs preschool. Every other moment is spent being tossed around, unsure of which way I’m heading.

I love watching her work and make progress. A few months ago she couldn’t ride a bike; now she can. Last week she identified a few letters in her name. This week, she sat down and did everything her therapists asked, and she kept her attention on their activities the whole time. It’s so exciting to see her overcome her challenges. I feel the sun on my face; I see hope. The waters are calm. and everything is going to be OK.

My search and rescue party is small. I keep my circle tight. I hear all the time how, “You’re handling everything so well.” And, “I don’t know how you do it.” And, “You’re superwoman!” but most people have no idea that I’m drowning, and I have to take refuge under my covers every afternoon when my daughter naps because I just need a reprieve from the grief and sadness that swirls around me. They don’t know that I’m trying to find the right antidepressant so I can be functional again. They only know my brave face.

I’ve become so skilled at navigating questions about my daughter. It’s rehearse, recite, repeat. The common question of, “How is your daughter doing?” is easy. List the accomplishments, list her schedule, list her diagnosis and finish with “She’s doing great!” The question that I cannot answer is, “How are you doing?” Uh oh. We’re taking on water. Adjust the sails, change the subject, get the hell out of there because the storms are coming in again. And I thought the forecast was sunny. I get pulled under again, start to sink. I’m not sure if it’s my asthma or my anxiety, but my lungs aren’t working and I can’t breathe.

Luckily, there’s always a loving outstretched hand that plunges into the water to pull me back to the surface. A precious friend who knows I’m drowning or my husband sends a text at just the right time. They lift me up when I need it most so I can float on a little longer. They know the unpredictable and tumultuous nature of my emotions. They know when I need to have fun, when I need to cry, when I need to laugh, when I need to run and they know all of those things could happen in the span of moments. They part the clouds, and I’m back in the calm center of the storm where I can find the sun again, enjoy my daughter and focus on the things that need to be done for her. I can barely make out the shore, but it’s there. There’s hope out there for her, for us.

My deepest desire is that this journey won’t last forever. It seems that this ocean filled with my own tears is vast and deep, and every time I think I’m getting better and accepting of our new normal, I get pulled further out to sea. I hope someday soon I’ll make landfall and stay out of the deep forever. I’ll visit from time to time, but never need to cross it again.

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