Posts Tagged ‘
Thursday, October 30th, 2014
On Sunday, November 2 at 2 AM, we turn back the clock an hour. Although moms and dads everywhere may wish they could sleep during that extra hour, the reality is most kids will be up and at ‘em. For parents of children with special needs who already have sleep challenges, this can be an especially tricky time of year. A few key strategies to make things go more smoothly for everyone:
• Ease into it. For the next several days, move up your child’s nap and bedtime by 15 minutes. Come Sunday morning, your darlings may just sleep in for most of that extra hour. This worked well for our family when our kids were little.
• Find the time. If your child is learning how to tell time, or has never had her own clock, this is a good moment to get her one. I let my daughter pick out an inexpensive digital clock online. On Saturday night, I plan to explain the whole “Spring ahead, fall back” thing, turn the clock back and—perhaps most importantly—show her the time when she is allowed to knock on our bedroom door in the morning.
• Make coming home in the dark welcoming. Returning to a pitch-black house after a family dinner out tends to make all of us hate Sunday nights even more, but we’ve found a new solution. Our family got a Piper to try, a chic mini home security and video monitoring system you control through an app. It’s been great to watch and listen in on the kids while I’m at work (there’s a 180-degree lens, so you can view an entire room) and talk to them through the two-way audio. We also got a door/window sensor, for extra security. Our favorite feature is the Smart Switch sensor, which plugs into an outlet; we connected a living room lamp to it, and now before we get home I turn it on from the Piper app so there’s a nice warm glow in the house when we drive up to it. When we’re out I change the setting to “Away” so the motion detector can alert us if anyone tries to break in and steal the Halloween candy.
• Actually use the shades. Pull them down at bedtime; you don’t want sunlight waking your children up any earlier than they might be inclined to because of the time change.
• Create a sleep chart. If the time shift has thrown off your tot, make a chart with columns for Bedtime/Wake-up Time/How I Feel. Fill them out with her daily, and talk through any grumpiness issues.
• Have a time-switch treat. At our house, we make chocolate-chip banana pancakes the morning after we switch back to standard time and, in the spring, the morning after we go to Daylight Saving Time. No matter how early we rise and shine, it makes getting up totally worth it.
From my other blog:
One thing to do that could save your life
The amazing two words a kid said about my son
The thrill of doing absolutely, positively nothing
Image of boy in white bed via Shutterstock
Add a Comment
Friday, October 24th, 2014
“While I do love my son, and am fiercely protective of him, I know our lives would have been happier and far less complicated if he had never been born. I do wish I’d had an abortion. I wish it every day.” Those are the shocking words I read this morning, in a Daily Mail article, said by Gillian Relf, 69, mom to Stephen, 47. The piece has gotten a lot of attention, as did another recent one by the same publication in which other parents of a child with disability also said they would have terminated their pregnancy.
Let’s set aside the fact that this is a newspaper that thrives on shocking people into reading it. These are still real sentiments coming from real people. I read them with both sadness and heavy disappointment about the message they were implicitly conveying to the masses: That kids and adults with disability are damaged, lesser human beings who can ruin people’s lives.
As the parent of a kid with cerebral palsy, I completely understand the struggle with accepting a child’s special needs. Many of us contend with that. Just this week, I was musing about the ghost of that other child—the one I expected to have. In general, though, I’ve come to a place where Max’s disability is a part of who he is. Not every parent of a kid with special needs feels that way, of course, or needs to. Mom Gillian Relf is from a different generation; I wonder if she’d think otherwise if she had the resources and social media support that parents of kids with special needs have these days.
Still, making a public proclamation that you wish you’d aborted your child with Down syndrome is unfortunate. It’s downright painful to those of us who are out there doing our best to get the world to accept and include our children, which is often an uphill battle. It’s a free world and of course, any parent has a right to speak her mind—but I can’t but help but feel disturbed when people set back progress the rest of us have made for helping the world welcome children with special needs.
From my other blog:
The ghost of the child you expected yours to be
An extra chromosome does not define people with Down syndrome: Love this video
The amazing two words a kid said about my son
Image of empty baby stroller via Shutterstock
Add a Comment
Thursday, October 9th, 2014
I’m always looking for special things to do with my daughter. Because as the kid of a sibling with special needs, she has her own special needs—as in, she deserves extra attention, too.
I wasn’t sure I would be able to top our Katy Perry concert outing back in July. I mean, I’ve taken her out for brunch. We’ve done paint-your-own pottery. On occasion we go shopping at the mall (if it were up to her, we’d go every single day). And we have quality together time: When I come home from work, we hang on the couch and talk about stuff that happened during the day. Most mornings, she wakes me up by crawling into bed next to me.
I’ve been thinking about getting some sort of matching jewelry for us. Growing up, my mom, sister and I all had matching gold necklaces with our names in script, and we loved them. Then I discovered Chinchar/Maloney Fine Jewelry, a company based out of Portland, Oregon that makes beautiful birthstone bracelets along with one-of-a-kind handmade earrings, necklaces and charms in gold and silver. Sabrina chose our matching set—sterling silver, with delicate blue topaz and moissanite stones—and they sent them to us. They’re not our actual birthstones, she just liked the colors.
What we got
The bracelets came in cool boxes
I so love her hands, which still have little-kid in them even though she’s 9 (going on 40)
Sabrina and I literally took our new bracelets out for a walk after we got them: We cruised around the neighborhood because she wanted to show them off to friends. We wear them all the time, her to school and me to work, or to events together on weekends. Sometimes, when I’m at my office, I’ll look down at my bracelet and think of her. “Sabrina, do you think of me when you look at your bracelet?” I asked her. “No, Mommy, I think the bracelet looks so sparkly!” she said. KIDS!
I have my eye on these Cherry Blossom Earrings in Silver for Sabrina’s birthday present
The company is family-run by couple Colin Chinchar and Marian Maloney, along with Colin’s sister Lorien plus a pug named Roy (aka the Cuteness Supervisor). They recently donated profits from sales to Special Olympics, and now they’re offering to help with a cause that’s important to our family. For any jewelry purchased between between now and November 5, 2014, they will donate 7 percent of every birthstone piece sold to Friendship Circle, an organization that runs programs for kids with special needs (we’re doing the Friendship Circle walk at the end of October to raise funds). Max has participated in activities for years, and adores them. The company is also offering a 10 percent discount on any jewelry for the next 30 days; just enter the code BIRTHSTONE at checkout.
Thanks to C/M for the beautiful bracelets—and for having 14k hearts.
From my other blog:
5 secrets of special needs parent happiness
The simple gesture that transformed my crappy day
What my child with cerebral palsy taught me: Parents share
Images of bracelet and earrings: Chinchar/Maloney
Add a Comment
Wednesday, March 5th, 2014
This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at Atypical Familia (formerly of AutismWonderland).
I once asked a friend if her son knew that he has autism. “No,” she said, “We’re not that kind of family.” I left it at that because I understood what she meant.
Growing up we never talked about my sister’s intellectual disability. My sister’s original diagnosis was mental retardation and on the occasion my mother referred to it, she’d say, “She’s not retarded. She’s just a little slow.”
I can’t fault my mother for not being open about my sister’s disability. My mother’s of another generation. And my sister – who is in her mid-twenties – is quite “high-functioning.” She works part-time, she goes to the gym, she takes the train by herself.
The other day we were out for a family dinner – talking and laughing the way families do. And as my sister was telling me a story, she used the “r-word” to describe something she thought was stupid.
There are times when I hear it, I speak out against it. And there are moments when I let it go. But whenever the word is used in front of my son, I can’t let it go. I will not allow anyone to use the r-word in front of Norrin. I will tell them to use another word.
Hearing my sister use the word upset me and I couldn’t let it go. She used it in front of Norrin. She used a word that degrades herself and every individual with a disability. When I explained to her why I didn’t want her using the word, she apologized. “It’s just slang,” she said.
My sister believed it was slang because she was never taught otherwise. We never talked about the r-word at all in our house.
But the r-word is not “just slang.” It’s a slur. It’s a word meant to insult. In a recent Huffington Post article by John C. McGinley, he writes:
…however blithe the everyday practice of spicing up one’s speech with the words “retard,” “retarded” and the suffix “-tard” has become? The (presumably) unintended result is still the same. A population of people, who has never done anything to harm anyone, is circuitously targeted and suffers from a trickle-down discrimination that is very real and very painful.
My sister is a hard worker, she is a talented artist and she’s bright. She’s a young women worthy of respect, not ridicule. I wouldn’t want anyone to use the r-word in my sister’s presence and I certainly don’t want her using it.
My son Norrin doesn’t know that he has autism, he is not capable of understanding his diagnosis just yet. But we don’t whisper the word autism. One day, we will tell Norrin he is autistic. It’s not about being a certain kind of family. It’s about teaching him who he is. And teaching him to stand up for himself when he is being discriminated against.
Today is the day to Spread The Word – the annual day to raise awareness about using the r-word. I admire this online movement and those committed to taking the pledge. But awareness needs to begin at home. We need to talk about disability and the words that we use. We need to talk to them about respect for all. We need to talk to them about the weight of their words. Words are powerful weapons and like any other weapon, we need to teach our kids how to use them responsibly.
Sign up to get more helpful parenting advice straight to you inbox.
From my other blog
Add a Comment
autism, autism awareness, Autism Hopes, Bullying child with special needs, Disability, health, Lisa Quinones Fontanez, Parenting, R-word, raising kids with special needs, school education, special needs parenting, special needs parenting advice, Spread The Word To End The Word | Categories:
Autism, Children With Special Needs, Disability, Down Syndrome, Health, Must Read
Wednesday, February 19th, 2014
This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.
Before I was a mom and before my son, Norrin, was diagnosed with autism I used to side eye the mothers who had their ‘too big’ kids stuffed into the seat of a shopping cart. I thought the kids were lazy and assumed the moms had no control. Now I know better.
I remember what it was like shopping with Norrin when he was younger and first diagnosed with autism. If I were with my husband, it was easier. If I was by myself, I’d either hoist him up and squeeze him into the shopping cart seat (knowing he had exceeded the limit) or struggle while shopping, holding his hand and navigating crowded store aisles.
Even now, at eight years old, we hold Norrin’s hand or stay close by. And those few seconds if/when he runs away and out of sight and I’m yelling his name scanning the aisles, are agonizing. I wish he could still fit in a shopping cart seat so that I can run in and out without me having a heartache or him a meltdown.
The moment I saw Caroline’s Cart in my Facebook feed, I knew how important it was for special needs families. The cart was specifically “created for special needs children. It provides parents and caregivers a viable option to transport a child through a store while grocery shopping, without simultaneously having to maneuver a wheelchair and a traditional grocery cart.”
Some of the features of Caroline’s Cart includes:
- The seat back has a five degree tilt for increased comfort for low muscle tone children
- The seat faces the caregiver, so eye contact is easy to maintain, children with anxiety issues can watch the parent during the shopping trip, and children prone to seizures can be monitored
- The platform below the seat provides a footrest for the child
- An abductor in the seat helps keep the child upright
- A harness helps to secure the child so parents have hands free to steer the cart and shop
While Norrin doesn’t require the use of a wheelchair, we could still benefit from Caroline’s Cart. Sometimes shopping can be overwhelming for kids with autism. Stores are sensory overload – people talking, kids crying, loud speakers crackling, shopping carts banging into displays. Caroline’s Cart would be especially helpful while at check out. It can be difficult to keep an eye on Norrin while I’m trying to unload my purchases and pay.
I haven’t seen Caroline’s Cart in any of my local stores, but I’ll be looking. And I want you to look too. If you don’t see it and you need it, don’t be scared to make a call or send an email. Because it never hurts to just ask. It worked for this mom, it could work for you.
For ideas on what to do with the food after you get home from the grocery store, sign up for our weekly recipes newsletter!
image: screen shot Caroline’s Cart
Add a Comment
autism, autism awareness, Autism Hopes, Autism inspiration, cerebral palsy, Disability, Down Syndrome, health, Lisa Quinones Fontanez, Parenting, special needs parenting, special needs parenting advice | Categories:
Autism, Cerebral Palsy, Disability, Down Syndrome, Health, Must Read, To The Max