Tag Archives: special needs parenting

Be wary the jobs you suggest to me

12 Jun

“Hey, we have openings for people to work with adults with disabilities. Would you be interested in this job?”

A very nice, lovely someone asked me this, not knowing the completely honest yet probably unexpected response I’d have.

“Dear God why? Why would you ask me that?”

Not my best moment.

She wasn’t the first to ask me such a thing. I inspire that train of thought in people. “You should work in special ed!” or “Have you considered started a program for children with disabilities?” My reactions are always similar – I’m startled, and blurt out something that is probably considered rude.

I know it’s meant as a compliment. I am vocal about helping those with disabilities, advocating for my daughter, educating people on what our life is like. They see me with Maura, us getting along famously, us working together, Maura happy and me pretty chill.

I make this shit look easy.

So of course, I would be inspired to make it all my life’s work.

I just can’t.

I’m fantastic with Maura’s disability because it’s what I know. I don’t know other disabilities as well, or some at all. I can handle autism because I’ve been around it. But otherwise, I’m about 10% better than the average person when it comes to all sorts of other disabilities.

I would make a horrible special ed teacher because I’d make a horrible teacher. I’ve never been inclined to teach. Actually, anything requiring a leadership position makes me break out into a sweat. The idea of running a program? I’d probably break out in hives. The idea of being in charge of a program makes me nauseated.

I know my limits.

These suggestions are usually given by good people who don’t have a child with disabilities. So they miss a vital point. That point? That I’m already doing this 24/7, 365 days a year, until the end of my time. I am living the dream, caregiving with the best of them, always on call, always on duty. When I’m not directly dealing with Maura, I would like to use my time in other ways.

Wow, that sounds selfish and horrible, doesn’t it?

Yet, no one suggests a regular mom do more regular mom things while her kids are at school. “Oh, you have kids? You should totally work at a daycare! You’re so good at changing diapers!” No, in those cases, people are all “You should totally pursue other interests, be a fitness instructor because you love running.” No one suggested I become a special ed teacher before I had Maura – and I have friends who *are* special ed teachers.

It’s okay though – I feel guilty about not wanting to work more with people with disabilities as well.

But also, I know  my limits.

The thing is, I have my own pile o’ issues to work on when I’m not keeping Maura alive. I’ve got 44 years of matching baggage to sort out while my anxiety hovers over my shoulder breathing heavily onto my neck. I’ve got weight to lose, and a healthy living train to get on because I have to live forever. I have a book to finish revising. I have laundry to catch up on, and groceries to buy. I have that day, once in a great while, where I recharge by hiding in my room binge-watching Netflix, because I don’t always handle stress well.

I also need to learn how to answer these questions with a bit more tact. That may take awhile, as I have a history of blurting out responses that require more tact.


Meanwhile, jobs I would trample over my own offspring for are as follows, so please, offer them to me –

  • working in a bookstore, because mama needs a discount on books
  • cocktail taster
  • hammock tester
  • permanent fixture at coffee shop
  • paid writer
  • museum wanderer
  • Lush bathbomb reviewer
  • foot model for all those “feet on beach” shots
  • paid shopper for Target
  • professional napper

Serious inquiries only.




A backpack of one’s own

9 Jun

“That’s mine!” I stated with some resignation mixed with frustration. Because once again, Maura nabbed something I bought for myself and claimed it as hers.

This is an ongoing problem. Maura doesn’t differentiate between the stuff that is hers, and the stuff she wants to be hers – to her, it should all be hers. I buy myself new shoes? She’s trying them on. I get a maxi skirt at Target? She’s wearing it before I’m done unloading the car. I spend three months searching for a good backpack for myself to haul my writing gear in because she took the last backpack I bought? She’s got it stuffed with tutus and on her back without me even realizing she’s taken it from the place I thought I had hidden away.

It’s not just my stuff. She gleans from everyone. Collin was missing his wallet. We started searching. I found Miriam’s wallet in one of Maura’s backpacks before finding Collin’s in another of Maura’s backpacks. Sean was missing keys on a lanyard. Maura had them. Josh didn’t even know when Maura nabbed $120 in cash from his bag. No, that one, I got an email from Maura’s teacher with “So Maura brought in a Dooney & Burke purse with $120 in it. I’ve locked it in a cabinet until you can come retrieve it.”

The purse came from the thrift shop. I’ve yet to use it because every time I turn around, it’s in Maura’s room.

It’s frustrating, and something that we’re still trying to teach her, to make her understand. Our stuff is our stuff, even if she wants it. Other people’s stuff is other people’s stuff, even if she wants it. Just because she wants it doesn’t mean she can claim it as her own.

But she doesn’t get this. Which is why, as Maura and I were leaving my friend’s house, I searched her backpack. And found two things that didn’t belong to Maura. Once home, I found two more things that belonged to my friend in Maura’s backpack. It was disappointing – because Maura choose to steal books when I know my friend has a fantastic jewelry collection. Luckily, this friend also has a fantastic sense of humor and applauded Maura in her choice of books (an art history book and “The Agony and the Ecstasy”).

It’s not easy though when you live with this every day. Every day, she’s swiping a sibling’s possession, sometimes one they need, like their wallet or their cell phone. Maura has two of her own wallets, but she wants her siblings. She wants to take Miriam’s sketchbook, even though I have given Maura her own notebooks. She wants my legal pad full of notes, even though she has her own legal pad. We can provide her with things, but she wants more, she wants the new stuff that comes in. She has little self-control over it at times.

Which is why, despite owning several backpacks of her own, Maura last night swiped my new backpack again. Even after I explained that it was mine, and she understood that explanation enough to be unhappy about it. I didn’t see her swipe my backpack, Josh found it tucked away in her room this morning. He quickly hid it while she was in the bathroom and made her choose one of her own backpacks.

I don’t know if this is a phase or not, but even if it is a phase, I am braced for the fact that it is a long-term phase. Maura goes through phases slowly, so this compulsion to take other people’s stuff? Could last years. Some days, I’m okay with that. Other days, it’s just really tiring.

But for now, I’m just going to stake this one claim on this one backpack I bought for myself.


How learning about Maura’s issues helped me define my own

30 May

A few years ago, Josh and I went out all by ourselves, as a couple of grown ups. Being grown ups, we went to Yo Sushi! – a place at the local shopping centre that served up sushi on a conveyor belt. I won’t lie – I’m not a foodie and I think conveyor-belt sushi is fun.

They had a special running – all you could eat for an hour for twenty euro. The catch was that you had to finish every plate you took. No big deal –  I didn’t stray from the things I loved, and I could also share with Josh.

Near the end of our meal, the little chocolate mochi things went by. Mochi is a Japanese rice cake made out of glutinous rice pounded into a paste and molded into a shape – usually a little flattish-roundish shape. Miriam had gotten some the previous visit and declared it the best food ever. And it was chocolate. What could go wrong?

I bit into it and immediately regretted my decision. If I hadn’t been a grown woman, I would have spat it out and rubbed my tongue clean like a 4 year old, while going “Ew!”

But I was a grown woman. So instead, I whined while trying to chew the bite of mochi. My husband laughed as I was all “Ew! OMG! It’s like chewing snot! Oh God!” while several different expressions of horror crossed my face I’m sure.

“You really don’t like certain textures.” he said, before finishing off the mochi for me without any drama.

Yes, my husband laughed during my horrifying food moment (which was fine, I was laughing at myself as well), but he also validated something I’d tried explaining my whole life.

“I mean, if you can’t eat something chocolate because of texture, it’s definitely a real issue.”


I didn’t actually learn about sensory issues until I had Maura.

And then I had to learn all the different sensory issues. How some seek, some avoid, some just can’t handle, some live for sensory experience, some both seek and avoid.

Maura is more of a seeker. Her avoidance issues have been few but memorable. Like how Maura would eat anything you put on her high chair tray…except kiwi. She’d pick it up…then put it right back down. It wasn’t a taste thing, I just think she didn’t like the slimy feel.

Or Play-Doh. We were sitting in OT, Maura in the short high chair seat with tray, and the therapist put Play-Doh on the tray. Maura physically recoiled from it. The OT took it off the tray, Maura sat back up again. The OT brought it back out, Maura leaned as far away from it as possible. It was the weirdest thing. Maura did eventually get over her aversion with Play-Doh and did learn to like it (not through force, just repeated offering and us playing with it). But to this day, we’re not sure why she recoiled from it.

And tunnels. Maura hated tunnels. They were just a big NOPE for her. If you tried to put her in one, she’d scream bloody murder – which we found out the hard way at IKEA. The other three kids went through the tall tunnel entrance to the IKEA kids section, and we assumed Maura, as usual, would want to do the same.

We were so very wrong.

But for the most part, Maura loves to seek out sensory stuff. She loves her floofy duvet. She likes a certain brand of pj’s because of the material. She enjoys swings and bikes and anything that causes the wind to hit her face. She adores the water.

It’s been a learning curve for certain, but in learning about her sensory issues, I’ve discovered mine.

For as long as I could remember, I was labeled the “picky eater” – so much so, I embraced that term for myself as well. But as I learned about Maura’s issues, I started looking at my own picky eating.

First on the list – oatmeal. I loathe oatmeal. Growing up, it was the main breakfast offering, but I wouldn’t eat it. When forced to put a spoonful in my mouth, I’d gag – and then be called overdramatic – which…okay…I was a dramatic kid…but the gagging was real. That sticky chunky texture just makes me want to hurl.

The weird thing was – I liked the smell of it. I loved oatmeal raisin cookies. But having to eat it was torture. I would have rather gone hungry.

And then there were mushrooms – my mom’s favorite. She loves mushrooms. I loathe them. I think having to choose between oatmeal and mushrooms, I’d choose neither. Mushrooms are so slimy and limp and gross and rubbery. I just can’t. At this point, the thought of a mushroom in something ruins the whole dish for me. That’s how much it’s taken over, the aversion.

Then there’s weird quirks, like creamy dressings and sauces. I eat pudding with the smallest spoon I own – big globs just aren’t manageable. Shredded chicken, as it turns out, is not my favorite thing either. I keep trying to like it then remember I don’t.

And mochi is definitely on my “Oh God no!” list now.

But I also learned it wasn’t just food. Any clothing that feels too snug starts to mess with my head until I have to change. Wind blowing hair into my face is like fingernails on a chalkboard. Go figure, I can handle fingernails on a chalkboard, but the sound of chalk scraping together? ugh.

I can’t handle an overload of noise. If you’ve got the tv on, play another video on your computer, and someone else decides to play music while you try to talk to me, you may not get a full answer from me. My brain is trying to pick up ALL the words everywhere, and it’s too much. It’s weird, because I can also tune out noises. Kids screaming? I can tune out. Baby crying but safe and being attended to? I can tune out. Neighbor using his drills for 7 hours straight? Well, then I have to kill someone.

Don’t get me started on chewing. Yeah, you’re with me on that one. <high five>

My husband likes blankets that are heavy. I feel like I’m getting crushed under them. Yet Maura leaning on me for 14 hours of the day I’ve gotten used to. Even if she’s actually smothering me.

No, it doesn’t make sense, but it is all sensory.

The good news is, I really understand Maura’s issues and quirks. So when she fusses about her one shoe, I know to check to make sure the sock is on right (those toe seams are annoying) and that it’s not tied too tight, without her having to explain why her shoe is bothering her. When she puts something in her mouth and takes it right back out? I’m ready to take the offensive item away. When she needs the wind in her face and a loud bass beat – well, she can go for a drive with Dad in the Jeep. But I do let her have her music “too loud” in my car.

Because while I don’t understand all of Maura’s issues, I get the sensory ones. I get that they don’t make sense. My husband gets that they don’t make sense.

That chocolate mochi made it all so clear.



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