Posts Tagged ‘ sleep ’

What Special Needs Moms Really Want For Mother’s Day

Thursday, May 9th, 2013

All I want for Mother’s Day is to sleep in, till about 10:00 a.m. or so. No breakfast in bed, please! I just want to be served straight up, uninterrupted, really deep sleep.

Don’t get me wrong: Flowers would be lovely and all, but sleep is what I dream of. When I’m able to get quality sleep, that is. I’m usually up till midnight or so working or doing chores. Max usually wakes up in the middle of the night and tries to crash in our bed. On weekends, the kids are up and at ‘em around 7 a.m. or so, but lately Max has had this lovely habit of rising at 5:30 in the morning.

Earlier this week, I asked Facebook friends what they’d like for Mother’s Day, and I’m in excellent sleep-deprived company: sleeping in, “a nap” and “uninterrupted sleep” were the most popular contenders (with a few chocolate-covered strawberries thrown in). Looks like moms of kids with autism have the same thing in mind! I’d also like a few hours in the house alone, but I think that’s maybe illegal to suggest to the kids as a MOTHER’S day activity, and could result in years of therapy, so I won’t be mentioning that.

Actually, the majority of things on mom’s wish lists cost no money whatsoever—see how easy it is to please us, Dads and Significant Others?! Here are some things moms of kids with special needs want most this Sunday.

All I Want for Mother’s Day Is….

“For someone to clean my house and fold all of the laundry.”—Deborah Walker

“A day of peace—with no agenda, fighting or selfishness. A day when my entire family can think about something other than themselves and time slows down to a calm & relaxing pace.”–Jennifer Lee Black

“Flowers, a meal made by someone besides myself, and a nap. In that order.”—Sunday Stilwell

“To one day hear my son call me Mama. Whether it be this Mother’s Day or in ten years from now. I’ll be patient.”—Nicole Bellefleur Valdron

“Acknowledgment.”—Rachel Maurer

“For my children to be healthy and happy!”—Jennifer Sellers Campbell

“A meal that I don’t have to cook or clean up from, and that I can actually eat without jumping up every 5 seconds to get someone something.”—Cindy Turner Detlefs

“To be able to spend a lot of time with my own mom.”—Jenny Saul-Avila

“For my kids to put something back from where they got it.”—Chrisa Hickey

“Positive attitudes all around me.”—Amanda Evangeline Cleland Maddox

“An afternoon snuggling on the couch with a movie.”—Amanda Guyton

“I am going all out with this one. I want a whole 24 hours to myself! That would include uninterrupted sleep, meals and at least one hot bath.”—Jessica Hamilton

“A housekeeper or a gardner. Either one would be great!”—Kate Anders

“An uninterrupted meal! Any meal!”—Sonia J. Lopez

“Honestly? Something—anything—that lets me know my kids still like having me as their mother. They’re 18 and 23, but I’d settle for a short note on lined paper.”—Laura Raymond

“For my kids to go one day without having a fight that turns into a major meltdown!”—Amy Benton Bradley-Hole

“A morning snuggling with the kids over books or The Wizard of Oz while my husband gets up and makes breakfast. And a Bloody Mary—or a Mimosa, I’m not picky.”—Helena H

“A massage!”—Rebecca Uccello

“Quiet.”—Jamie Ponder Prince

From my other blog:

Congratulations: You’re Mom of the Year!

Top 20 Reasons Moms Of Kids With Special Needs Rock

20 More Reasons Moms Of Kids With Special Needs Rock

Image of woman sleeping in bed via Shutterstock

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A Mother’s Day Wish List For An Autism Mom

Wednesday, May 8th, 2013

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.

 

 

Sunday is Mother’s Day and when I was growing up, my mom used to say that all she wanted was peace and quiet. She never asked for anything or expected anything more than a card from us and/or my dad.  Now that I’m a mom, I feel the same way. Just this morning I told my husband not to buy me anything for Mother’s Day. Well I actually said, “Please don’t buy me clothes because if you buy something too small, I’ll feel bad.” (I’ve gained weight and my husband, though incredibly thoughtful, is known for buying me the clothes two sizes too small.)

Last night I posted a question to my Facebook page. I asked what autism moms what was on their wish list for Mother’s Day. I loved all the responses so much I’m sharing my favorites below:

A Day Free From Housework. Wouldn’t that be lovely! If I walked in and found someone else cleaning, I’d be one happy mom.

To Hear “I Love You.”  Kids with autism don’t often express themselves spontaneously. Norrin rarely says “I love you” on his own, I always say it first. And kids who are non-verbal, cannot say “I love you” at all.  If you know a mom with a non-verbal child, maybe you can help them make a special card to give as a gift. If a child is verbal, maybe you can prompt them to say “I love you.” (Typically, I’m not a fan of prompting “I love you” but in some cases – I’m okay with it.)

A Mani/Pedi. YES PLEASE! Autism moms rarely treat themselves. A mani/pedi would make her feel pretty and rejuvenated.

A Day Out with Girlfriends. Every mom needs girl time.  If your bestie is an autism mom, give her  a call and take her out for a cup of coffee, a walk or a mani/pedi (see above!).

Dinner & Dishes. Give an autism mom a break. Cook her a nice meal and do the dishes. Let mom kick back on the sofa.

A Movie. While mom is relaxing after that delicious meal you cooked, let her watch her favorite movie in total peace.

A Good Book. If movies aren’t her thing – give her some time to curl up with a glass of wine and a good book.

SLEEP. You want to make an autism mom happy on Mother’s Day? LET HER SLEEP. Seriously. Close the bedroom door, keep the kids busy and just let her sleep. Let her wake up on her own. It could be the best gift you give her.

I’d be happy with any of these things on Mother’s Day. What’s on your Mother’s Day Wish List?

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The #1 Time Suck of Parenting A Child With Special Needs: Listen Up, Insurance Companies!

Thursday, September 27th, 2012

On average, people spend 7 minutes a day waiting for a cup of coffee, 20 minutes a day in traffic, 20 minutes a day waiting for the bus or train and 43 minutes waiting each time they go to the doctor, reports a new Timex survey. In another survey of 3,230 women by Real Simple and the Families and Work Institute, all mothers polled said they spent more than 14 hours a week on child care; 52 percent have less than 90 minutes of free time a day, and 29 percent had less than 45 minutes of time to themselves a day.

Wow. Considering all that, it is amazing that parents of kids with special needs are able to even sleep. Free time? HA HA HA. Also: HA HA HA HA HA. Even after the kids are asleep at night, I am typically filling out forms, Googling information or apps that could help Max, emailing back and forth with his therapists and teachers, you name it. Some days, taking a bathroom break feels like a treat.

I am raising two kids, one who has no particular special needs (other than an occasional ‘tude) and one who has cerebral palsy, and so I know full well how much actual “time” each one takes. The truth is, everything with Max takes more time, from dressing to doing homework to taking a bath. That’s just the way it is—I’m not complaining. Then there’s the time I spend throughout the year taking Max to therapists or special doctor appointments. I’m not griping about that, either: I will do anything and everything I can to enable Max and help him succeed in this world. In the end, the most significant time suck of all is my dealings with the insurance company. And, oh yes, I AM GRIPING ABOUT THAT.

It’s not that a call with an insurance company necessarily takes more time than, say, driving Max to the speech therapist (although I’ve spent as long as an hour on the phone with reps). It’s just that the calls themselves are particularly sucky time sucks because I’m usually calling about yet another claim that has mysteriously gone unpaid, though I have sent in all the required paperwork. Or I’m calling about an appeal that has gone unaddressed. These calls have the tendency to suck the life right out of you.

Typical conversation with an insurance company representative:

Me: “I sent in that information two months ago.”

Rep: “Let me check. Do you mind holding?”

Me: “OK.”

[Insert 10 minutes of not-at-all-relaxing Muzak]

Rep: “Hello. You’re right, that information was in the system.”

Me: “So why did I get a letter stating the information needed to be sent in?”

Rep: “I apologize, ma’am, I’m not sure.”

[Clonk clonk clonk: sound of me banging head against the wall.]

Years ago, when I was with a different insurance company, they assigned a case manager to our family at my request. That meant I had just one person who was familiar with Max’s history, one person to call when I ran into issues, one person who was basically on top of everything.

With our current insurance company I was told that, no, there is no way to assign us one dedicated claims specialist.

Sigh. There oughta be a law. As the mom of a child with special needs, I have so, so, so many demands on my time. (Did I mention I have so many demands on my time?!). It would make my life far easier to have a dedicated claims specialist. I suspect it would also streamline things on the insurance company’s end, too.

Are you listening, insurance companies?

Now you’ll have to excuse me; I’m off to treat myself to a deep breath.

From my other blog: 

Why is it so hard to find a place of worship that welcomes kids with special needs?

Max walks up the stairs by himself for the first time: the video

A Bill of Rights for Parents of Kids With Special Needs

Image of woman with alarm clock on head via Shutterstock

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On Kicking A Co-Sleeping Kid With Special Needs Out Of Your Bed

Tuesday, August 14th, 2012

I wake up in the morning when my son does. This is because he’s lying right next to me. He typically wanders into our bedroom at around 1 in the morning. I’m half asleep when I pick him up and plop him down between me and my husband. Sometimes, I’m surprised to find him in bed in the morning because I don’t even remember putting him in the there.

Max is 9. When he was a baby, I wanted to co-sleep. He’d been through serious trauma at birth and I had real concerns he could stop breathing in the middle of the night or have a seizure. By the time he was 3, though, my husband and I wanted out of our bed. It wasn’t easy. In the ensuing years, bedtime was a constant struggle and too often Max ended up with us.

Finally, we tricked out his room: mattresses on the floor for him and his sister to “camp out” on, special turtle night lights that glowed different colors in the dark, Pillow Pets. It worked… for a few months. Then he was back in our bed again.

Neither my husband nor I get a great night’s sleep when Max is with us. He tosses and turns, and has been known to whack one of us across the face. My fantasies these days involve being in a hotel room, alone, and having a king size bed where I and I alone get to sleep.

I was recently talking about this with a friend. “I hate to admit it, but we finally put a lock on J’s door so she couldn’t come into our room in the middle of the night,” she tells me.

Hmmm. Locking your child in is one solution, but it seems so medieval (not to mention unsafe, in case of a fire).  I know exactly what we need to do: play hardball. Return Max right to his bed, again and again and again, night after night. It’s what’s best for us, and for him, too; he’s 9, and needs all the independence encouragement he can get.

At 1:00 in the morning, though, my willpower is way weak. I’ll admit, too, that part of me wants to still watch over this child who’s been through so much. I’m haunted by memories of the morning when he was 1&1/2 and woke up early in the morning in our bed, burning up. Suddenly, I noticed one of his legs twitching. And then his entire body was shaking. He was having a grand mal seizure, one that didn’t stop until doctors at the hospital got it under control. If Max hadn’t been sleeping with us, who knows when we would have noticed the seizure.

My son’s co-sleeping issues are partly his, and mostly my own.

The time has come for me to deal. Last night, I went upstairs to go to sleep and found both of my kids asleep in my bed. I crashed in my daughter’s bed, my husband slept in Max’s. Our co-sleeping saga had reached new heights of dysfunction.

Tonight, when Max wanders in, I’m going to walk him right back to his bed. And I’ll do it again if I have to.

Maybe.

 

From my other blog:

The American cheese milestone 

Kids with special needs: an awesome slideshow

The best swim gear for kids with special needs

Image of feet sticking out of bed via Shutterstock

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