What it’s like: a day in the life of a special needs mom

While the other moms sit on the bench chatting beside the playground, you are chasing your 5 year old son, trying to keep him from climbing onto strangers’ laps and dismantling the swings. Before you know it, it’s already time to defuse a meltdown. If you’re really lucky, you will get a comment like “you need to learn to handle your child.” You will smile and walk away because you know that she couldn’t possibly understand what it’s like to parent a child that is not only from a hard place, but that is mentally disabled. But that statement will make you want to cry anyways. But you won’t, because you will be too busy being supermom to your son.

Although you’ve learned to let it all go, you can still feel the stares and whispers as your son trots by on his toes, flapping his hands and his balloon wildly.

While the mom’s group at church is at a mom’s night out dinner, you are at home caring for your child because there is not a babysitter/childcare center that is equipped to watch him, and your hubby is out working a second job to help support the cost of raising a special needs child.

When all the other parents are deciding what activities SusieQ and Johnny are going to participate in this year, you wish that’s all you had to worry about. Instead, you will be busy scheduling psych visits, IEP meetings, hunting down advocates, finding new therapists, trying out new medication, praying for better days and reading more books on a particular special need. And you will be buying lots of balloons. Lots.

When the mom sitting next to you asks how old your son is and you reply 5, you will see the same old raised eyebrow and confused face. Then that awkward silence will fill the air until you put her at ease. Then she will see that you are just a mom, and your son is just a kid. It’s as simple as that.

When a child asks you why can’t your son talk? or is he a baby? you will calmly and gently explain the situation at their level, but the pang in your heart will ache the rest of the day.

When you hear other moms complaining about trivial, mundane parenting issues, you will want to laugh. You will simultaneously feel like some sort of freakish super human and an alien, all at the same time.

Something bad will happen during your day and you will think to yourself…this is all you got? Really?! If I can fly half-way around the world with my new-to-me special needs son and be a part of his miraculous progress, I can do anything!

When you see your child painfully trying to engage another human being in meaningful contact, you won’t give a flying flip about what others think and you will be so proud of your child that your heart will nearly explode. You will want to scream it from the rooftops…I love my child, he is so completely amazing!!! Rock on Big Brother! Look at my kid, isn’t he amazing?! Do you know how hard he works and how far he has come?!

After a particularly hard day, you will walk into the living room to find this…

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….and think to yourself that you must be doing at least something right.

You will go to bed with a smile on your face and gratitude in your heart. And then you will awake, and do it all again. Oh, and next time you see that mom at the playground, you will want to stick your tongue out and say nana-na-boo-boo at her because she couldn’t possibly understand the profound joy that arises out of the challenges of being mom to a special needs child.

24 thoughts on “What it’s like: a day in the life of a special needs mom

  1. Rachel Zook

    Love it! We are supermom’s and the rest can just stare. They will never understand the struggles we face. THe highs are high but the lows are even lower. Hang in there and know you are doing what is right!! I will say though sometimes I just want to smack some mom’s when they complain, I wish that my biggest problems where potty training.

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  2. I'm taking a nap

    My best friends oldest son has CP and is autistic. I’ve known them since he was 3 and have seen the way some people react to him. My kids had questions about him when we first met and I educated them about what his difficulties were. Now, when they are out with their friends and someone makes a nasty/rude comment about M, they set the other kid straight. Just yesterday my younger son was overheard lecturing one of his “normal” friends about M and how he thought M was awesome and was his besty and the kid better be nice or he’d get a “foot in his butt”

    Some people deserve said foot lol.

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  3. Taryn

    Wow, I feel like a total wuss for complaining about my days. Thanks for this insight- both bad and good- into what special needs parents go through everyday.

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  4. Cliffmama

    Your strength and love is an inspiration. And your son is one lucky boy to have such a wonderful mom. Take a deep breath and keep letting the world know about your life and about your son, so that others may understand and practice more empathy and compassion.

    Reply
  5. Pingback: Adoption Link of the Week – A Day In The Life of A Special Needs Mom | Dear To Me

  6. Nicole

    Stopping by from NHBO, I’m one of the contributing bloggers over there :-) LOVED this post – although my SN DD does not have autism, she has physical and speech delays and I do feel like I am sometimes making excuses for the fact that she doesn’t answer questions or is slower than other kids her age. Thanks for this wonderful post, so well written!

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  7. Speed Chic

    Beautiful and perfect children! It’s the adults, generally, with the problem. Once tool I have learned to deal pleasantly with those raised eyebrows is to have a little card printed out with websites for autism information. Then you can gracefully say to the evil lady behind you in the grocery line: “I’m sorry my son with special needs is disturbing you, here are some resources for understanding more about autism.” ;)

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  8. ilene

    OK, I had a rough summer with my oldest – a very strong willed girl. I am going to try to go one day without complaining about her once – after reading your account of a day in the life with a special needs child. Perspective is appreciated.

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  9. sjskill

    Thank you for working at making your part of the world special. I admire you. Enjoy your SITS day as well as you can.

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  10. jesterqueen (@jesterqueen)

    My kids both go to a school for kids with autism, so I’ve been lucky enough to have a community of other parents who all go through these things as well. My kids are both highly verbal, and my daughter especially will get right up in strangers’ faces and ask, in her blunt and helpful way, “what are YOU looking at? He’s got autism.” In defense of her melting brother or a nonverbal classmate. We take field trips with the school (Build-A-Bear is this afternoon!!) because the point isn’t to isolate our kids from the rest of the world but to teach them how to manage it. And it’s just so nice on those days to have my kid not be the only odd duck out. All these kids are unique, and they have a protective little community of their own going on that’s just wonderful to watch.

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  11. Alley

    It’s posts like these that make me proud to be cousin to an Autistic child and aunt to a Down’s syndrome one as well. Why? Because when my daughter’s friends comment (mind you my younger daughter has a severe anxiety issue…nothing debilitating though) on other children’s behavior she simply tells them “there is a reason, I am sure of that. You can’t always see handicaps.” I have heard her say it and I cry each time…I might have her read this so she knows what good she is doing by not judging.

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  12. cafemochareflections

    Hi I’m visiting from SITS, we do juggle and that’s what we do best “we just do it”. My 16 year old daughter is autistic, it’s been an amazing journey. I went to her IEP meeting the other day and we have to start talking about transitioning into adulthood. Umm, she’s still my baby!

    Reply

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