2 days ago
Friday, November 29, 2013
Special Needs Blogger Weekend Link-Up: Suck It Black Friday edition
It's the Special Needs Blogger Weekend Link-Up, and wouldn't you rather be here than braving the crowds at the stores and practically risking your life to get a bargain Xbox? Me, too.
The idea
Link to a favorite post of the week—yours or someone else's. Note: A few people have had trouble posting using Internet Explorer. Try a different browser!
What to do
Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post (or just the name of the post, if there's no room—you get 80 characters).
Like this: Love That Max: I Ate More Stuffing Than Mommy Did!
Where it says "Your URL" put the direct link to the post.
Click "Enter." Leave a comment if you want to say more. Go check out some great posts.
Happy linking!
Wednesday, November 27, 2013
15 things special needs parents are thankful for
The progress—every single bit of it. A new finger movement. A step taken. A syllable spoken. A word read. No development ever feels small or beyond squeals. (Ours.)
The therapists in our kids' lives. "I got Max to make a k sound!" said his therapist after his Saturday session and once again, she seemed like a miracle worker. (K's, p's and b's are particularly hard sounds to make.) Speech, physical or occupational, the therapists enable our kids and show us the way.
Their teachers, too. "Max has been blowing me away with all his singing!" a music teacher emailed from school last week. Singing? Max was singing? She'd gotten him to sing? Just, whoa.
The cuteness. Ohhhhh, the cuteness. No matter what challenges our children may have, they are not the least bit cuteness impaired.
The technology that gives our kids a voice. Max said something to me the other day, and I wasn't sure what it was so he tapped it out on the iPad. "Toysrus" he wrote. Oh. He wanted us to take him to Toys 'R Us. We might not always want to HEAR what's on our kids minds but thanks to the wonders of speech apps and communication devices, they can tell us.
Coffee. Coffee, coffee, coffee, coffee and...more coffee. Without it, we might never get out of bed.
And let us not forget: Pinot Grigio. [Or insert adult beverage of choice.]
Our children's adoration. Me, I'm "Ommy." And it is the best word ever. Before I was "Ommy," when Max didn't speak words, there was a special Mommy look of love.
Friends and family who treat our kids like any kid. No pity parties. Just people who know that even if our kids have their challenges, inside they are still kids.
Cracking up over the silly stuff. Because nothing feels more normal than laughing with your kid over a loud burp.
The babysitter. We need both a break and someone who knows how to take care of our kids. When that sitter shows up at the door on Saturday night, it's tempting to kiss her on the lips.
Empathy from other parents. Sometimes, all it takes is a little smile from a fellow mom when your child is having a sensory meltdown in Aisle 8 or on the airport security line to stop you from having one, too.
When the insurance company actually pays claims. Even if it took eight calls and the paperwork you sent got lost at least once and supervisors didn't have any clue what was up, the check really was in the mail.
All that our kids teach the world. Our kids are not "saints" or "angels" because of their mere existence, as some might believe. Sometimes, they are even brats. But they do show the people in their lives the many abilities in disability—and that amazing children come in all forms.
Tuesday, November 26, 2013
The anti-stress strategy that actually works
I had a house-maintenance meltdown when I came home from work last night. A massive amount of fall leaves had taken over the lawn. Squirrels had nibbled on the pumpkins on our front porch, leaving chewed-up orange chunks all over the place. One of the gutters was crooked and looked like it might fall. And the lamp-post light had started going on at 6:00 in the morning instead of 6:00 p.m., and needed to be fixed. I just don't have time to deal, I thought. Also: I don't want to nag Dave about this, because there are approximately fifty billion other things he needs to do around the house.
So I tried a strategy I discovered when I wrote an article for Health magazine about feeling gratitude. Called The George Bailey Effect, it's named for the character in It's A Wonderful Life who gets to see what the world would be like had he never been born. You just picture life without whatever's getting to you—your job, your commute, your house—and you get a deeper appreciation for them. (With the exception, perhaps, of mothers-in-law.)
I focused on what life would have been like with Max if we didn't have our home. I thought back to his babyhood, and how I would have missed cuddling with him in the cushy rocking chair in his light-filled room. I pictured Max and the walker he used as a tot, and his not having the bottom floor to zoom around and around and around. I pondered how Max would still be doing therapy at the kitchen table and getting distracted if we hadn't renovated the basement to be his therapy space. I thought of Max's adaptive tricycle and where he'd ride it if he didn't have our street, a quiet one without much traffic.
And suddenly, I felt a rush of love for our home, crappy yard and spewed pumpkin be damned. We are lucky to have our house, and I just had to miss it to know it.
Then I nagged Dave to help me clean up this weekend. Whew! That felt good.
Image: Flickr/anieto2k
Monday, November 25, 2013
A mom seeks justice—and gets an amazing apology
When Kari Wagner-Peck, mom to a 7-year-old boy with Down syndrome known as "T" in her blog, discovered that journalist Chuck Klosterman—who pens The Ethicist column for the New York Times—had a history of using the word "retard" in his writing, she wrote him a letter. "Is it ethical to contribute to the denigration of the vulnerable?" she asked. "Please enlighten me: What are the ethics of using the r-word?"
She never expected to get the astounding response she did. "I was wrong. You are right," Klosterman wrote. "I should not have used 'retard' pejoratively. It was immature, hurtful and thoughtless. I have no justification for my actions.... I take full responsibility for my actions and understand why this matters so much to you. I'm truly sorry."
Here, Kari shares some background on what went down.
What made you first aware of Chuck Klosterman's usage of the word "retard"?
I googled him when his appointment as The Ethicist was announced this summer out of curiosity because I have read him for years. While I was searching, a quote by Klosterman that refers to "hipsters and retards" came up on some website titled something like Best Hipster Quotes Ever. I could not believe the writer I loved wrote that. Then I discovered he had, for New York magazine.
What went through your mind as you googled and found more instances when he'd used the word?
I thought it was crappy to use these words for the punch line of a joke. All of them were meant to be funny. What stood out was they were beyond the pale. And the excerpts were just hostile.
Have you had to deal with instances of people you know in real life using the word?
Several times. When I hear someone say, "That’s so retarded!" or some variation of that I try to wait until I can speak to them privately. I say pretty much the same thing every time–and I have lost count on the number of times I have had this conversation. I say, "When you said [insert r-word phrase here] I know you were not talking about my son who has Down syndrome. But, I want you to know that word hurts our family." That’s usually enough for the person to fall all over themselves and apologize. I have had a few people start crying. I have had a few people get defensive. To those that get it, I would like to think they stopped saying it but I don’t ask them to. I am having a conversation that is my intention. My husband had an ugly experience a couple years ago. He and my son walked through the door at a holiday party. Our son was immediately engaged by a friend so he did not hear this but my husband overheard a kid whisper to her brother, "Look a retard." My husband said he felt like he had been sucker punched. The other thing that struck him is the kid didn’t sound mean. He really thinks that who our son is. He was completely ignorant.
What were you hoping for when you wrote Klosterman?
First, I wanted an answer to my question. I incorrectly assumed he would make it about political correct speak and that I am over-sensitive. So there you go, don’t judge a book by his cover—or the author by his words. If he had come back that way my hope was for dialogue.
What was your reaction when you saw first Klosterman's email in your in-box, and as you read it?
Well, first he actually emailed me two after I posted the letter but it went to the SPAM of my blog email! I hammered away at him with other on social media for another three days! He must have been like, "What does this mother want from me!" I had sent an email to the Public Editor at The Times, Margaret Sullivan. She emailed me back and asked if we could talk on the phone. She told me Chuck Klosterman had emailed. She then relayed to him what happened and he re-sent the email to my private account. As I read it I burst into tears. I was completely overwhelmed. I still get choked up when I read it. What he wrote and did is beyond anything I could have imagined or has been done in the struggle for people to get it. He is a game changer.
Klosterman offered to donate $25,000 to a charity. Where is that going?
He offered two places in his letter as example but it was clear whatever I said would go. One of the places is totally inclusion-based. They also do excellent legislative work. It felt like we were on the same page. He sent the money out that day. It is his money and his donation—he created a self-imposed debt. Where it went is private unless he chooses to share the information.
What do you have to say to naysayers out there who say things like "Stop being so sensitive!" and "It's just a word!"
I have no interest in addressing them. My energy is limited—I am raising a kid, I have a job, I write, I have a life. My energy is for moving the conversation forward with whoever I think can help me. The reality—the word is a reflection of how we view "these people." That is true whether someone means that when they use the word or not.This sounds very grand but my goal is to help change the world in favor of people like my son. I cannot be pulled down by people who want to plant their flag on saving a hateful word.
Someday, when T grows up and can read this, what do you hope his reaction will be?
Seriously, I hope it’s something like, "What else would I expect from you? You’re my mother." This is mother’s work. This is my real job. Your kids aren’t supposed to throw a parade every time you have their back.
Friday, November 22, 2013
Special Needs Blogger Weekend Link-Up: George Clooney edition
It's the Special Needs Blogger Weekend Link-Up, inspired by George Clooney because I can't wait to see him in Gravity this weekend or next. Although it would be awesome if he wanted to share a post.
Link to a favorite post of the week—yours, someone else's or George Clooney's. Note: Some people have had issues posting using Internet Explorer. Try a different browser!
What to do
Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post (or just the name of the post, if there's no room—you get 80 characters).
Like this: Love That Max: My Dad Is Hotter Than George Clooney
Where it says "Your URL" put the direct link to the post.
Click "Enter." Leave a comment if you want to say more. Go check out some great posts.
Happy linking!
Photo: Flickr/csztova
Thursday, November 21, 2013
The grief that won't let go
I've gotten to the point where I can talk about Max's birth and not get distraught. "He had a stroke at birth," I'll say, matter-of-factly. I'll note that until we had Max, neither Dave nor I had a clue that babies could have strokes. Depending on who I'm speaking with, I might mention that Max's stroke was bilateral and affected both sides of his brain. Inevitably I will say, "He's doing so much better than doctors thought he would. He's a great kid."
But there are times when thinking about Max's birth makes me lose it, as happened the other night. I was cleaning out a cabinet and I found a disk with old photos. There was the above snapshot of Max from the morning after he was born. There was this video:
Dave shot the video a few minutes before Max stopped breathing and turned blue. Before it happened a second time and he was taken to the NICU. Before we'd learn, in the afternoon, that Max was having seizures—the first indication that he'd had a stroke.
But Max looks so perfect in the photos and video. And I look so happy, the kind of delirious happy you are after you've had a baby. And my mom and sister look so happy. And none of us could have ever imagined what lay ahead.
I sat on the couch and sobbed.
It's Post Traumatic Stress Disorder. My heart will not let go of the shock, anxiety and despair that consumed me back then.
"Your baby has had a stroke... a large one."
"Your son may never walk or talk."
"Your son may have severe cognitive impairment."
"You could sign a Do Not Resuscitate."
The bursts of sadness I can handle because they're just that, passing moments. But their continued existence bothers me because they are a disconnect to the realities of Max. I look at him and see only an amazing kid, not a tragedy.
Max's eleventh birthday is coming up. My eleventh anniversary as a mom is coming up. His birth will never be a happy event for me, yet why does it have to still hurt so much? It feels as if I am doing Max wrong by grieving this way. He doesn't deserve that.
After Max was born, I saw a therapist for a few months. I'd walk in the door from work, send the sitter home, bundle Max up, drive to the therapist and sit there and talk as Max lay sleeping in his car seat. It felt good to vent and cry freely and not feel like I was burdening anyone, as I sometimes felt with Dave or my friends.
Last year, around this time, I got it into my head that I was going to visit the hospital. Surely that could help exorcise the grief demons. I had fantasies about sneaking in to the NICU (maybe a kindly resident would escort me up?), but decided I'd be content to sit in the lobby and relive what had happened.
I told Dave. He didn't think it was a great idea. "It's the same reason why you don't look at Max's brain scans—it doesn't really do anything," he said. "I think you can use your time more productively." A perfectly rational answer, but I wasn't convinced.
I know two psychologists, and I spoke with them about my plan. "If you were my patient, I'd ask what you want to get out of this," said one. What I wanted, I told her, was to take the hell out of the hospital. She was dubious that a visit could do much, but as long as I was aware of that and had no great expectations, she said, "it could be a positive." The other shrink also wasn't sure I'd get anything out of it, but said I should try it because it couldn't hurt.
I still haven't gotten to the hospital.
When I'd finished crying, I went upstairs, washed my face and read a book in bed. I knew I'd wake up in the morning feeling better, and I did. But it was Max who gave me the biggest lift.
Max had led me over to our big family calendar on the kitchen wall. I thought he was going to ask me show him when his birthday party is. Only he pointed to November 27, looked at me and said "Mommy's birthday." He has never before paid much attention to it, never known the date. Progress.
The grief, I suspect, will always be a part of me. I need to quit struggling with why it's still there. It says nothing about my life now, my motherhood or my love for this boy, who is the best therapy of all.
When I'd finished crying, I went upstairs, washed my face and read a book in bed. I knew I'd wake up in the morning feeling better, and I did. But it was Max who gave me the biggest lift.
Max had led me over to our big family calendar on the kitchen wall. I thought he was going to ask me show him when his birthday party is. Only he pointed to November 27, looked at me and said "Mommy's birthday." He has never before paid much attention to it, never known the date. Progress.
The grief, I suspect, will always be a part of me. I need to quit struggling with why it's still there. It says nothing about my life now, my motherhood or my love for this boy, who is the best therapy of all.
Wednesday, November 20, 2013
Laundry room makeover (or: how I got Max to do the wash)
The laundry area of the house has long been one seriously unsightly area. It's the first thing you see when you come down the basement stairs, before you either head left to go to the playroom or right to go to the unfinished storage/furnace area. Not only was it cluttered, but our old laundry machines were low to the floor and not particularly accessible to Max, who needs more chores in his life.
Before
So when we redid the basement, we also made the laundry area more user-friendly and Max-friendly. The flowery rug is the Aster Area Rug from Home Decorators, an indoor-outdoor material that's really durable.
Whirlpool Duet Washer and Dryer on pedestals
I'd read up on washer/dryers, and this pair got good reviews. One nice no-brainer feature on the washer: You fill up the reservoir with detergent, and it shoots out the right amount for the next 10 to 12 loads. It also matches the cycle to the right temp for your clothes, to help prevent fade, and runs really quietly. It has Delay Start, for up till 8 hours later, and an adjustable soil level. And there's a nice melodic sound at the end, not some annoying buzzer that makes you think armageddon is near.
The Duet Steam Gas Dryer is similarly state-of-the-art. It monitors moisture and helps end the cycle when everything's dry, saving energy and time and shrinkage that makes your 8-year-old whine "Mommmmmy, you ruuuuuuuined my shirrrrrrrrrrt!!!" It can hold really large loads, even bed comforters. If you want to de-wrinkle something, toss it in, hit "Steam Refresh" and it's ready in 15 minutes—a lovely feature for lazy ironers. Not that I know anyone like that.
One sleek clean machine
The pedestal has storage
The best "after" of all: Max now thinks it's fun to wash and dry clothes. Folding, not so much.
I grew up in an apartment, and when we bought our house eleven years ago I remember thinking we'd never run out of storage space. Right. It's insane how much crap piles up when you have kids and hoarder tendencies. The previous homeowners had open shelves in the area, which we never bothered to change; they became a catch-all storage space for whatever. As you may well know, you get used to the clutter. Occasionally, it does occur to you that things are a mess, but then you're all OMG I HAVE NO TIME TO DEAL. We dealt!
Sink area before
Sink area after. All the cabinetry is the IKEA Akurum line; this is the Akurum base cabinet in Harlig White with STAT doors. Our contractor carved out the back to accommodate the sink pipes.
This is the Moen Anabelle faucet from Lowe's, chosen especially because the handle is easy for Max to manipulate.
Scary storage area #1 before
Nice storage area #1 after
Scary storage area #2 before
Nice storage area #2 after
It's stayed neat like this! Um, more or less. But at least we can now hide the mess behind closed doors and pretend that things are neat, until you open a cabinet and a gigantic jar of pasta sauce falls out and lands on your bare foot. Not that I know anyone like that.
I found these old tins when I was cleaning out my Dad's apartment after he passed away. They're on the top of the cabinet, and always make me think of him.
Yet more storage, in the furnace area; we got several Lowe's Black & Decker Garage Cabinets. Not just for garages! Would you believe they're already filled up? You would?
Basement steps, Mohawk carpeting from Lowe's. Max chose the color because he said it looked like chocolate ice-cream. Me, I liked the name: Optimistic View.
Thanks to Whirlpool, IKEA and Lowe's for their contributions to the renovation.
Tuesday, November 19, 2013
One of the toughest parts of special needs parenting (and the most rewarding)
A few days before the November 2 pageant, Becki reached out to officials to ask about accommodations. "I figured in case they did need to modify, they'd have time to do so," Becki says. "But I sure wasn't prepared for it to be inaccessible."
Becki and Izzi
Becki had thought she could leave Izzi's stander on the stage, then carry her up a few steps to it. She learned that the auditorium at Hammons Heart Institute, an affiliation of Mercy Hospital where the ceremony would be held, had a series of 15 steps leading down to the stage—and that the girls would start the pageant by proceeding down them. "There were no ramps at all," says Becki, "and no way to come from backstage."
The steps in the auditorium
It was too late to modify the auditorium or switch venues, and things weren't going to work out. "It was heartbreaking for us," said hospital spokesperson Sonya Kullmann. It was more so for Izzi: "Izzi said over and over, 'Mama, I wanna be a princess,'" says Becki. "I told her and continue to tell her that she IS a princess." Pageant directors suggested another pageant that's taking place in February, Miss Branson, that has no steps involved; Izzi will be attending.
The auditorium in question was built in 1985, five years before the passage of the Americans With Disabilities Act (ADA), a civil rights law that prohibits discrimination based on ability in employment, public entities (including school districts), public accommodations and telecommunications. "A hospital is a public place so it falls under Title 3 of the ADA," explains Katy Neas, Senior Vice President of Relations for Easter Seals. Too often, officials in charge of public spaces that were constructed pre-ADA may claim they've never been asked to make them accessible (although the ADA also covers pre-existing buildings). "Unfortunately, and too often, unless people raise a fuss action isn't taken," continues Neas. "Even then, sometimes if people don't threaten to sue, nothing changes."
This may not come as news to those of us who've encountered inaccessible spaces, not to mention inaccessible mind-sets. Perhaps the toughest part of parenting a child with special needs is continuously finding ways to bypass or knock down roadblocks set up by society even as we're steering our kids' development and tending to their needs. And there are many, many roadblocks.
I recently had a conversation with a camp director about the possibility of Max attending the camp for a few weeks next summer, and being in a "typical" bunk with the help of an aide. I was gently told that Max would be best off in the dedicated program for kids with special needs, which is when I explained that Max attends a special-needs school year-round—and that I really wanted him to have an inclusionary experience. He said he'd look into possibilities. I never heard back, so I'll be calling again.
It gets tiring. Why does it have to be so hard? you wonder. Am I asking for anything outrageous? No. Don't I have enough on my hands? Yes. Where is my damn fairy godmother? But then you look at your child and you ache for him or her to enjoy the same events and everyday activities other kids do and have total access to life's pleasures and experiences. And you toss back another cup of coffee and sigh a big sigh and you keep going.
This may not come as news to those of us who've encountered inaccessible spaces, not to mention inaccessible mind-sets. Perhaps the toughest part of parenting a child with special needs is continuously finding ways to bypass or knock down roadblocks set up by society even as we're steering our kids' development and tending to their needs. And there are many, many roadblocks.
I recently had a conversation with a camp director about the possibility of Max attending the camp for a few weeks next summer, and being in a "typical" bunk with the help of an aide. I was gently told that Max would be best off in the dedicated program for kids with special needs, which is when I explained that Max attends a special-needs school year-round—and that I really wanted him to have an inclusionary experience. He said he'd look into possibilities. I never heard back, so I'll be calling again.
It gets tiring. Why does it have to be so hard? you wonder. Am I asking for anything outrageous? No. Don't I have enough on my hands? Yes. Where is my damn fairy godmother? But then you look at your child and you ache for him or her to enjoy the same events and everyday activities other kids do and have total access to life's pleasures and experiences. And you toss back another cup of coffee and sigh a big sigh and you keep going.
Becki's succeeded in getting all sorts of accommodations for Izzi and her stander. At school, they've changed the layout of Izzi's classroom. "The director of Sunday school at our church has had the maintenance department raise the tables so that Izzi can wheel right by under them," she says. "Even the children's librarians at our local library have ensured that things are accessible for Izzi. So this event of Izzi not being able to participate in her stander is foreign to us."
After writing a letter, Becki has been assured that the auditorium will be modified and that going forward, the pageant paperwork will include a question about needed accommodations. She says that a rep from Mercy Hospital called and asked for suggestions in making sure the facility is ADA compliant; supposedly, the hospital had plans to remodel within the next few years, but is going to speed that up.
Whether or not you're into pageants, the issue at stake is a larger one. "I am calling for parents of physically challenged children to not be hesitant in insisting that their children have the opportunity to participate in events such as this," Becki wrote in an opinion letter to a local paper that ran this weekend.
This is what we do as parents of kids with special needs: We make the calls, we write the letters, we raise our voices, we push and push some more. Says Becki, "As a parent, I've learned that I truly am my kid's biggest advocate."
More power to you, Becki. More power to us all for paving the way for our kids, and the ones who will follow in their footsteps.
Image of stairs: YouTube/KY3 video
Monday, November 18, 2013
I am officially hired as Max's spokesperson
This weekend, I took Max for a tour of our local police station. He's been fascinated by police lately. During a recent festival in town, as we walked around Max saw an officer directing traffic and offered to help (he let him, for a bit). Whenever we're on the highway and we drive by a trooper who's stopped a car, Max says "eeece!" ("police!") and "uh-oh!" and swivels his head as we pass. If Dave is driving and speeds up to pass a car, Max warns him, "eeece!" I figured Max would be into a visit to the station, and I called ahead and arranged it.
The patrolman met us at the entryway. We checked out command central, where the dispatcher gets incoming calls and a couple of dozen screens show what's going on around town; Max and I were both mesmerized. We visited the prisoner cells, where Max informed the officer that he was a good kid. He gleefully sat in the front seat of a police car, with the lights flashing (but no siren, thankyouverymuch).
As we headed out, Max peeked into a room and saw a bunch of policemen sitting there. He opened the door and went in. They were doing roll call. "I'm Max!" Max said. The lieutenant and men said hi. "How old are you?" one asked. Max answered that he was ten but going to be eleven, and then I repeated that.
The police had to get down to business, so we headed out and down the hall. Suddenly, Max turned around, booked back to the room and dashed in. I went to grab him.
Max looked at me expectantly and said, "Arrrs ooh!" ("Cars 2!") That is his shorthand for "Let's talk about the Cars 2 talking Lightning McQueen I'm getting for my birthday!"
I looked at him. "Max, come on, we have to go!" I said. "The policemen have to do their work." Everyone was staring.
"Arrrs oooh!" said Max.
I knew what I had to do, otherwise I wasn't easily getting him out of there. And so, I turned to the roomful of policemen and said, "Max just wanted you to know that he is getting a Cars 2 talking Lightning McQueen for his birthday."
"YEAH!" said Max.
"That's great!" the officers agreed.
Then we headed out. Max made a point of picking up the phone at the entryway so he could say bye to the dispatcher.
He would like to be a police officer when he grows up, he's telling me.
Friday, November 15, 2013
Special Needs Blogger Weekend Link-Up: Sharing is caring
It's the Special Needs Blogger Weekend Link-Up, which means it's Friday, which is a Very Good Thing.
The idea
Link to a favorite post of the week—yours or someone else's. Note: A few people have had issues posting using Internet Explorer. Try a different browser!
What to do
Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post (or just the name of the post, if there's no room—you get 80 characters).
Like this: Love That Max: Can we celebrate my birthday every day?
Where it says "Your URL" put the direct link to the post.
Click "Enter." Leave a comment if you want to say more. Go check out some great posts.
Happy linking!
Thursday, November 14, 2013
The homework that gave Max new perspective on ability
Every Friday, Max has current events homework due. His teacher recommended Dogonews, TweenTribune and Scholastic; we browse them and Max picks out an article he likes. Then we program his speech app to share the title and date of the article, the type of news (local, national or international), the main idea, his opinion and so on.
This week, Max chose a profile on Dogonews of George Dennehy, a 19-year-old musician whose rendition of the Goo Goo Dolls' song Iris went viral last year. Born without arms, George plays both cello and guitar with his feet and sings.
The article had a video of George playing at Musikfest 2012 with the Goo Goo Dolls. When I told Sabrina what we were about to watch, she said "That's impossible!" Ten seconds later, she said, "THAT IS SO COOL!"
Max was mesmerized.
Current events takes us a fair amount of time to do. I usually read the articles to Max, trying to get him to pick out words he knows. Inevitably, he asks me to type his answers into the Proloquo2Go for him, but I refuse. He doesn't have the bucks to pay my hourly rate for transcription services. Also: I want him to do it himself. So we have a stand-off, I win and he types.
Max's descriptions tend to be short and to the point. If I had to peck all my thoughts into an app, I'd be do the same. This time was no different:
Then I asked what he thought about the fact that George plays so well with his feet and that he got to play with a famous band. Max said a bunch of stuff to me, none of which I was able to understand. I asked him to type. And he said...
Image: YouTube video
Wednesday, November 13, 2013
Holiday gifts for kids with special needs: Wish list 2013
I've done three guides with holiday toys for kids with special needs (here, here and here). This season, with the unprecedented holiday of Thanksgivingukkah rapidly approaching, I'm sharing my shopping list for Max. Based on suggestions from his therapists, it includes stuff that helps with fine-motor skills, gross motor skills, speech and learning. But of course, some is just for f-u-n. Feel free to leave comments about the gifts that you're getting for your kids and why, so other parents can get yet more ideas.
Use the mat or draw a line on any sort of paper and the car follows it. (Just be careful your child doesn't draw a line to, say, Disney World.) Comes with car, playmate, decals and a special pen.
All Surface Connect-A-Scooter
Max uses one of these at school, and his physical therapist suggested we get an all-surface one he can use outdoors. It works on abdominal muscles, squatting and navigation skills. At school his PT has him do an obstacle course around small cones, or grab for puzzle pieces with knobs (Melissa & Doug make good ones).
YayLabs Play & Freeze Ice-Cream Maker
YayLabs Play & Freeze Ice-Cream Maker
It's not just an ice-cream maker, it's a science experiment (and a great way to encourage a kid with fine-motor skills to use a bilateral grasp). Available in a pint or quart, the ball has two compartments: one for ice and rock salt, the other for ice-cream mix (not included, you can just use cream, vanilla and sugar). Kids shake, roll and pass the ball to activate the ingredients and 10 minutes or so later, you've got soft-serve ice-cream. Make sure you save some for the kids. He, he.
Squiggle-Wiggle Writer
Squiggle-Wiggle Writer
A vibrating pen does loops, circles or curves, depending on how closely it's help to the paper. Max has loved using this in therapy; the OT says the weight and vibration give sensory input, and encourage a good grasp. Each set comes with nib attachments in five colors: black, blue, purple, pink and green. Tip: Borrow it to make writing checks for bill payments significantly more amusing!
Articulation Station App
Designed for iPad, iPhone and iPod and available on iTunes, this app comes highly recommended by Max's longtime speech therapist. It's created by speech-language pathologist (and mom of four) Heidi Hanks, and is geared to letting kids practice sounds. The ones kids most struggle with are included, and the app has a record/playback function. At Max's most recent session, he and the therapist worked on the initial and final "m" sound and he could grade whether or not he thought he said it correctly, which he loved (he nailed it). At the word level, you can choose flashcards or play a matching game and isolate sounds. Kids can also practice words in a sentence and read stores. Parents can purchase individual sounds, or get theArticulation Station Pro for $49.99. I've read up on reviews by speech therapists, and the consensus is this is the most comprehensive articulation app out there.
Melissa & Doug On The Go Colorblast!
Articulation Station App
Designed for iPad, iPhone and iPod and available on iTunes, this app comes highly recommended by Max's longtime speech therapist. It's created by speech-language pathologist (and mom of four) Heidi Hanks, and is geared to letting kids practice sounds. The ones kids most struggle with are included, and the app has a record/playback function. At Max's most recent session, he and the therapist worked on the initial and final "m" sound and he could grade whether or not he thought he said it correctly, which he loved (he nailed it). At the word level, you can choose flashcards or play a matching game and isolate sounds. Kids can also practice words in a sentence and read stores. Parents can purchase individual sounds, or get theArticulation Station Pro for $49.99. I've read up on reviews by speech therapists, and the consensus is this is the most comprehensive articulation app out there.
Melissa & Doug On The Go Colorblast!
Max has liked enjoyed this during occupational therapy; you color in the pics on the 24 pages with the special magic marker, and hidden sea creatures appear. It's good for increased finger strength, the OT says, along with visual vigilance, attention span and attention to detail. There are also books about vehicles, animals and dinosaurs.
Melissa & Doug Paint With Water - Ocean
Another water-play activity that encourages grasp...and fun!
Zig-Zag Drops Liquid Motion
It may seem random, but it's lightweight and easily fits into Max' hand—and it worked to get some supination during a therapy session (as in, when your hands and forearms rotate so palms face up, a position not naturally in Max's movement repertoire). If nothing else, our family can just sit around the kitchen table, zen out and sing Kumbaya.
Learning Resources Twist & Match Monsters Game
The game has six different colored cords that correspond to different parts of a monster. It works on bilateral coordination, matching and the concept of top, middle and bottom.
Mindware My First Marble RunGreat for grasp, cool to watch. Comes with 32 pieces including a jingle ball.
Uncle Milton Fireworks Light Show
This thing-a-mig doesn't actually set off fireworks in your kid's room (though that would be interesting, if illegal in some states). You, and hopefully your child, press a lever to project several images of fireworks onto a wall, with exploding sound effects. No learning value whatsoever (and not appropriate, as one Amazon reviewer said, "for bitter teenagers.") For a kid who's scared of live fireworks yet still fascinated by them, though, it could just be The Best Thing Ever. See a demo on YouTube video.
Mindware Imaginets
Boosts fine-motor and visual-thinking skills; kids can put together animals, faces, cars, approximations of Mommy's beautiful, smooth, unlined face and more. The magnetic board doubles as a dry-erase board, so kids can draw backdrops, too. Did I mention Mommy's beautiful, smooth, unlined face?
Alex Toys Slimy Sticky Silly Stuff
Cool science explorations and tactile fun with creating slime, putty, bouncy balls, crystals, jiggling bugs and glowing snow, with a booklet of 50 more concoctions to make. Plus a recorded device that says, "Kids, don't get the goop on the carpet!" As if.
Tubtime Fishing Set
Fun in the tub as kids work on hand-eye coordination and supination. Comes with one magnetic pole that extends to 18 inches, eight floating plastic fish and a storage case. Sorry, but I will be unable to come to your home to help pull your kids out of the bath when they refuse to.
And last, but so not least:
And if you'd like to check out gift guides from other years....
Great toys for kids with special needs 2015
Great toys for kids with special needs 2014
Great toys for kids with special needs 2012
Great toys for kids with special needs 2011
Great toys for kids with special needs 2010
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