What Being a ‘Special Needs Mom’ Has Taught Me About Just Plain Being a Mom

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I was chatting with a younger momma recently who asked me to share some tips and tricks for motherhood. She said she thought our life and all its crazy might have taught me a few things she could apply in her life as well — with or without special needs.

You know what? She’s absolutely right. Most of the lessons I’ve learned and the tips I share have more to do with just plain being a momma. So for her and for any of you, here is my list:

What I’ve Learned About Motherhood (So Far)

1. Always carry baby wipes – in your car, in your purse, wherever, no matter how old your kids are.

2. There is always a reason for unexplained behavior (and it’s usually not time for the exorcist). Slow things down a bit. Observe. Ask questions. Get some time alone with the child in question. You’re the momma. You’ll start to figure it out.

3. Get to know other mommas. Ask them real questions, even if you feel silly. Other moms can be our greatest resource.

4. Reading books together is fun — so are movies together as a family. Both make memories, so don’t feel bad about the media or beat yourself up about the chapter you missed.

5. When your child says, “I think I am going to throw up,” always, always, always grab a big bowl. As they get older, they will try and make it to the bathroom, and they will very rarely actually make it.

6. Meals happen every single day, three times a day. You might as well accept it and come up with a plan instead of being caught off guard at four every day (or every morning at eight or every afternoon at noon if you’re like me…ahem).

7. Sometimes, that plan might be scrambled eggs or cereal. It’s still a meal.

8. Carry snacks. Again, no matter how old your kids are, carry snacks.

9. When your child wants to snuggle just a little longer, snuggle. When you worry about spoiling your child because you snuggle them so much, please know there will come a time when snuggling with you is the last thing they will ever want to do. Snuggle now. Snuggle long. You will miss it.

10. The same thing goes for hugs, kisses and tickles.

11. You will work hard — really, really hard. Just because it’s hard, doesn’t mean you’re doing it wrong.

12. Figure out what you child is good at. Focus on that. Develop that strength. Focusing on the deficits rather than the strengths rarely produces excellence. Encourage their God given gifts.

13. Tell them as often as you can remember that you love them no matter what — no matter what they do or don’t do, no matter what they may say or not say. Tell them you’ll always, always, always love them — that it’s not possible to not love them.

14. There really is something to the airline instructions to secure your own oxygen mask before helping your children with theirs. If you’re unconscious, you can’t help anyone, and your children will be on their own. The same thing is true in life. If you’re barely surviving, whether you see it or not, your children will not be getting the care they need from you. Take time to just breathe and take care of you.

15. These children will bring you to your knees — in prayer, in scrubbing up messes you never dreamed possible, in fishing out tiny remote controlled cars out from under the fridge, in prayer.

16. If you feel yourself starting to slip… into depression, into drinking too much, into shopping too much, into binge-eating too much, there’s no shame in getting help. You’re someone’s momma. You matter.

17. Your car may not be clean for the next 18 years or so — inside or out.

18. You will marvel at how nasty a bathroom can actually be just a few days after you scrubbed it. It’s a motherhood mystery. You are not alone.

19. Sometimes, you will just close the door to that nasty bathroom and walk away. That’s OK.

20. You will worry way too much that you’re spoiling your kids. Conversely, you will worry way too much that you’re not spending enough time with your kids. If you are worried about both of these things, almost simultaneously, the truth is probably in the sweet spot… right in the middle.

21. Never ever research medical conditions on the internet before first talking to an actual doctor. No momma needs that kind of drama.

22. One day, you will look at your child and realize you’re staring him in the eye — not looking down, not bending over, just looking him in the eye. You will feel an odd mix of awe and loss.

23. No matter what the gender of your children, never leave your makeup out while your little ones are under the age of 9. Just trust me on this.

24. Get to know coffee. Make it your friend. Love it, and it will love you back.

25. Get used to saying “I’m sorry” to your child. You will mess up. You will mess up a lot.

26.  You will love more intensely than you ever thought possible. You will grieve more intensely than you ever thought possible. You will mess up worse than you ever thought possible. You will matter more to these children than you ever thought possible.

27. Get used to nakedness — lots of it. There’s a stretch of time where your child will love nothing more than to show you (and possibly others, in public) what they’ve got, any chance they get.

28. The nakedness thing will be replaced by total and complete privacy. Then you will find yourself trying to discretely peek to see if hair is now growing in places it previously did not.

29. If you are married, love your husband, even if it seems sometimes like he doesn’t love you back. Let your children see how much you love him. Tell them all the time how much you love him. He needs to hear it and so do they.

30. Build forts. They are a pain to clean up, but build them just the same. In time, you will remember those forts more fondly than they do.

31. Every once in a while, surprise them with ice cream or cake for dinner. They will survive the lack of nutrition, you’ll be the hero, and you won’t have to cook.

32. Your floors (especially the area in the corners) will be dirtier than you ever imagined. You will stress about this for some time. Then you will let it go.

33. When your child spills something — and.they.will. — try to react with grace (even if you just scrubbed that floor). We all make mistakes, and some children have more dexterity than others. A simple, “Oops. Let’s get the towel and clean this up together,” will do.

34. Sleep? Never, ever count on it. Then, it’s like a wonderful surprise when it actually happens.

35. At the end of the day, when you are beating yourself up for all the things you didn’t do, and all the things you wish you hadn’t done, stop. Stop and start to list the blessings. Every single day we have with our children is a gift. Just ask any momma who has lost her child, whose arms ache to hold her baby one last time. She will tell you. Even the bad stuff is wonderful. Even the messy and the crazy and the awful and the gut-wrenching is beautiful. This, more than anything else on this list, has been my greatest lesson as a momma so far.

No matter how sad or dark or grieved or messed up or crazy it feels, there is always, always, always something to be thankful for. There is always hope. There is always love.

This post originally appeared on Not the Former Things.

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This Young Woman Captures What Depression Feels Like in a Beautiful and Heartbreaking Way

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This is a powerful and unflinching look at a very serious condition.

Sabrina Benaim, 26, is a spoken word poet from Toronto who struggles with depression and anxiety, according to her website. In the performance below, she spectacularly articulates what it feels like to live with these conditions and the frustration that comes from trying explain herself to others.

Watch Sabrina Benaim’s “Explaining My Depression to My Mother” at the 2014 National Poetry Slam in the video below:

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. Head here for a list of crisis centers around the world.

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When I Started Eating Lunch With My Classmate With Down Syndrome

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Differences surround us. They can define us. They can hurt and separate, shape us and inspire us.

In fifth grade, the last thing most people want to be is different.

That’s when I met Caleb, as we were waiting for the bus to take us home. Caleb was obviously ready for the school day to be over; he kept saying, “Bus, bus, bus.” I was unsure what to think at first, but I knew, much like me, Caleb wanted the day to be done. But that seemed to be where our similarities stopped. He was unlike most of the other fifth graders I knew.  

Caleb has Down syndrome.

He spent most of his time in a different classroom than the rest of the other students. He often sat in a different section of the cafeteria. He spoke differently; he acted differently.  

But our differences didn’t scare me. In fact, our differences brought us together.

Around this time, I became involved in the Adaptive P.E. program at school. The program was voluntary and allowed me to work with my peers with special needs. I definitely wanted to be a part of it. Not only did I enjoy the program, but I learned more about Caleb.

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Every day at lunch, I would sit with him. I thought this would be tough at first, because I was unsure how to interact because of our differences. But it was actually fun. After lunch, I would walk Caleb to P.E., and we would play together. We would bowl. We would dance. We would laugh.

And I began to look forward to spending time with him.

Others didn’t understand what was on Caleb’s plate, like I did. Others judged him. They looked at him with strange faces. They excluded him from activities.

One day, at recess, this all changed.

Caleb and I ventured outside to play soccer together. I assumed the game would only be the two of us. But much to my surprise, all of the other kids joined us. And this time, no one judged Caleb. No one made fun of him. No one left him out. It was Caleb’s soccer game, and I stood in amazement and happiness when I noticed the other kids give Caleb the ball and let him score. 

Caleb has taught me that it’s OK to be different. He’s reminded me to treat others the way I want to be treated. I know, without a doubt, he is out in the world somewhere, teaching others this same lesson.

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My Son Did Something Naughty… and My Heart Swelled With Joy

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IMG_6746 I’ve been to many parent/teacher conferences. I have three typically-developing children — well-behaved, high achievers. In these later years of their schooling, I’ve received a lot of forms with “No conference necessary at this time” checked off. In the early years I went in to confer with teachers, who, to my surprise, never wanted to talk about the sheer wonderfulness of my darlings. There was always a problem. Most of the time the problem was talking in class.

“I’ve tried him in every seat in the room,” my oldest’s first grade teacher complained in her beautiful Irish brogue. “Finally I put him in the back and he talked to himself!”

It was the same with my two daughters. All I could do was say how sorry I was that they were disrupting the class, promise to talk to them, and do so. Then I waited for maturity and the passage of time to do the real work. I myself was often written up as the chatterbox, my name chalked on Mrs. Turtur’s blackboard circa 1976.

Now I have a son in kindergarten who doesn’t talk — or walk or see. When I go in for a conference (and it’s always necessary) I already know we won’t be discussing his sheer wonderfulness. The life and education of a special needs child is a continual problem-solving process, and I’ve become a de facto member of the Child Study Team.

Last year I went in to meet with T’s TVI (Teacher of the Visually Impaired). They’d been working on nesting and stacking cups. T uses an adaptive activity chair with a tray in these sessions, and Miss R. told me when he grows frustrated with the activity, T pushes the cups off of his tray with a sweeping arm motion.

“But Mrs. V. [my son’s aide] has gotten very good at catching the cups in mid-air and putting them right back,” Miss R. assured me. “So… lately he’s started throwing them backwards over his shoulder, instead.”

We looked at each other for a moment, and then I burst out laughing. Miss R. did too.

“I know… it’s wonderful, isn’t it?” she said. “So typical for his age, so creative…”

“So naughty,” I filled in.

It’s so hard for T to make himself known as a person in the world. At home we know him well, but it’s hard sometimes for us to understand what he wants and needs. He has only a few signs and sounds he uses to communicate. He relies on others to move him around and bring him things. We make so many decisions for T, and many of them are guesses.

I never expected that my heart would swell with joy when I heard my little boy was doing something naughty. I went around bragging about it for days. He’d given me the gift not just of rebelling against something, but finding a new and better way to rebel when thwarted. Sometimes, when I worry, I take that memory out and picture Miss R.’s impression of T tossing a cup over his shoulder with determination and aplomb.

Naughty — but also very nice.

The Mighty is celebrating the moments we gave or received a gift that touched our lives in a special way. If you’d like to participate, please send a blog post describing this moment for you. Include a photo and 1-2 sentence bio to [email protected].
Hint! Some gifts don’t come in packages.

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The Holiday E-mail All Parents of Children With Special Needs Should Read

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Ah, the holidays…

They always end up being so hectic and stressful. Add a child with autism in the mix and things become even more chaotic. I wrote to our therapist about my daughter, Lila, and Christmas. The truth is, the gifts mean nothing to Lila. She couldn’t care less. Know what she wants for Christmas? Her balloons and ping pong balls and for Mommy and Daddy to be at home playing with her.

We all have these preconceived ideas about the holidays and what they should look like. Baking cookies with our children, watching their eyes light up while we explain Santa and the reindeer to them, listening to Christmas music, decorating the tree together, having a picture taken with Santa, looking at Christmas lights, visiting family, all while our perfectly wrapped presents sit under the tree. And we don’t stress – we just enjoy the holiday season, right?

Is that really how it is for anyone? I have my doubts. You know… we’ve already re-arranged our entire lives for Lila and her autism, but for whatever reason, it never occurred to me we could flip the script on the holidays as well. Our SoonerStart therapist, Janet, sent me the following in an e-mail. I genuinely believe it’s something all parents of children with special needs should hear, so I wanted to share it with you:

There are so many social norms and expectations surrounding the holidays. It’s like there’s a big book of items that are stereotypical and everyone feels if they aren’t ticking off a certain number of them, they aren’t doing it right. So many holiday things are hard for people with ASD. Different foods/cooking smells, longer travel times to infrequently visited homes with unfamiliar people and a different schedule, things you can’t touch, sitting on Santa’s lap, opening gifts, more shopping trips, all the forced social interactions, I could go on and on…

This is a great opportunity to ditch all the “normal” expectations and start to develop BETTER, new, fun ways for you all to do the holiday thing. Free yourself from all that garbage and follow her lead. You can celebrate in an AUTHENTIC and true way to your family. Your special twist on things will mean so much more to her than ANY gift. It’s kind of exciting and freeing isn’t it – to get to rewrite the book and tick your own things off? You are going to have a much better time than a lot of “normal” families. Makes you almost feel sorry for them… 🙂

So, please take that advice and do as you wish with it. I hope it helps you and your families like it has helped me. Our holidays won’t ever be what typical families would consider normal, but maybe – just maybe — they will be even better. Happy Holidays and much love to all of you and your beautiful, different little families!

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This post originally appeared on Dancing With Autism.

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I Would Have Made an Awesome Soccer Mom

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I had a few hours of free time on Sunday, and because I lead a very sexy life, I used the time to clean out my pantry. It’s a little room off my kitchen that has, over the last six years since my son came home, transitioned from a cute, chandeliered office/pantry to an enter-at-your-own-risk-I-can’t-be-responsible-for-what-falls-on-your-head room. It was time.

Photos, party supplies, glue guns, three coffee makers, expired cupcake mix – I sorted and filed and moved and tossed. I was on the last shelf when I yanked down a big, big box marked “ice cream social.” Huh? Two things: one, why do I have a huge box marked “ice cream social”? And two, I don’t even remember being the person who had time to appropriately label stuff in my pantry.

I opened the box, and inside was everything you need for the coolest kid party ever. There was a shake maker, snow-cone machine, cotton candy spinner and a cake pop baker. Long-handled spoons, ice cream bowls and a bright table cloth with ice cream cones printed on it. At the bottom of this box — the cherry on this surprise sundae — was a lime green pedestal that held six small bowls for ice cream toppings. Sitting in the middle of the spinning pedestal was a ceramic cupcake with a removable lid for hot fudge or caramel or strawberry sauce. It was summer and Pinterest and laughing children in one clever serving piece. It was darling.

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I wanted to throw the darling cupcake as hard as I could against the wall.

Instead, I sat down next to the box called “ice cream social” and cried.

I remember this stuff. I bid on it at a silent auction years ago, back when ice cream socials and impromptu play dates and birthday parties had starring roles in my parenting plan. Back before I knew that my son’s meltdowns were not a phase and back when I thought he played by himself because he was shy. Back before I had any idea that I would not be a soccer mom but a special needs mom.

What I have here is a box full of plans for a kid I don’t have. Some days, like today, it makes me sad.

I was crying for my son, but I’ll admit I was also crying for me. Instead of six different ice cream toppings always on hand for my son’s friends, I have an endless supply of pens for his therapists. Instead of being the house that everyone comes to, we are the people that are never home. Instead of bike rides, we have speech therapy; instead of swim parties, we go to OT.

Do I begrudge this? Not ever. But is this what I planned? No. Every once in a while, not very often, but every once in a while, I give myself permission to grieve for the life I don’t have, to think about the mom I don’t get to be.

I wrapped up the cupcake and put it back in the box. One day. Maybe. In the meantime, the sweetest boy in the world was on his way home. As moms go, I think I’m doing OK. Ice cream socials are fun, but my son needs a mom with a backbone, some fight and a strong voice. I’ve got that.

But just so you know, I would have made an awesome soccer mom.

Sincerely,
Becca

This post originally appeared on Sincerely, Becca.

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