Friday, September 28, 2012

Special Needs Blogger Weekend Link-Up: share!

It's another weekend link-up for bloggers with kids who have special needs. Ready for a good time?

The idea

Share a favorite post of the week.

What to do

Where it says "Your name" put the name of your blog followed by the title of your post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: I Can Screech Louder Than My Sister Can!

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, September 27, 2012

5 ways to use music to help a child with special needs

Max has had music therapy sessions for years now, thanks to the wonderful Joanne. It's been amazing for his development, and he always has a blast. (Sabrina, too.) Music may have powers to soothe the savage beast, but it has special powers for kids with special needs.

"Singing can open new pathways for language, communication and social interaction," says Yasmine White, founder and Executive Director of Voices Together, introduced to me by my friends at CVS Caremark All Kids Can. She knows what she's talking about: Her award-winning nonprofit, based in Chapel Hill, North Carolina, uses a choral structure and interactive songs to help people with disabilities ranging from 7 to 65 years old. The groups are lead by board-certified music therapists or a music educator, and offered in special ed classrooms and in colleges.

Yasmine leads the first Voices Together class, in 2006

"Individuals who have difficulty speaking may be able to sing words, sentences or sometimes sing an entire song," notes Yasmine, who has spent more than 25 years in the field of music therapy. "Music stimulates the brain in unique ways. Rhythm structures the body and mind, and so it is a natural structure for language and movement."

Here, Yasmine shares five ways you can put her Voices Together practices to good use at home with your kids:

Make up lyrics to tunes you know, like This Little Light of Min. Then stop singing mid-lyric so your child will be prompted to fill in the blank. So for example you could sing, "This little Max of mine, I'm gonna let him shine... this little [stop singing and wait for child to say his/her name] of mine, I'm gonna let him [stop singing and wait for child to say his/her name.]" This expectation of a response is very motivating. 

Get kids moving their bodies to the rhythm. You can, for instance, suggest that your child move their arms up or down to a song. At Voices Together, we've made up songs like "I feel the beat in my feet!" and children stomp their feet.

Use rhythm to increase language and social skills. Purchase some toy instruments or get out the pots and pans and flip them over on the kitchen floor so you have different sound drums, then give your child a wooden spoon to smack them with. This is a great opportunity to work on turn-taking, listening and initiating an action (and fine-motor skills, too). For example, say "Your turn" and encourage your child to bang on the instruments, then at a certain point give them a verbal cue—"annnnnnnd stop!" Then say "My turn" and you play a rhythm.

Use rhythm to work on imitation by banging out a rhythm or even making up a word or words to a rhythm, then wait for your child to imitate you.

Have song-centric playdatesSinging together by its very nature has been shown to form social connections. Organize a playdate with other moms/dads and kids and sing in a circle. This is wonderful for modeling and forming community. Group singing is also an opportunity to model social rules such as turn taking, and to work on listening skills. One kid chooses a song and you ask the question to another child in the group: “What song did Alex choose?”   

This is one of a series of posts sponsored by CVS Caremark All Kids Can, a commitment to helping children of all abilities be the best they can be. Like them on Facebook!

Tuesday, September 25, 2012

T-shirts that slam kids with special needs: another disability WTF

This super-offensive, super-demeaning t-shirt is not from one of those sites that specializes in offensiveness. It's being sold online by Hastings, a multimedia entertainment store with 146 locations around the country; a mom of a child with special needs in Montana found it in her store. "We were able to have it pulled from shelves locally," she wrote to me on Facebook, "but since it is a national chain, we feel this might be a concern for all special needs parents and it might be in other stores."

Max rides a "short bus." Not once has he ever considered this to be shameful, or something to be ridiculed. Actually, he loves that mini yellow bus. Hastings powers-that-be, can you imagine how this t-shirt would make my child feel if he understood what it meant? And can you consider what sort of message you are spreading about children with special needs when you sell t-shirts like this?


• Who came up with the idea for this t-shirt in the first place?
• Who printed this t-shirt?
• Who from Hastings gave the green-light to purchase these t-shirts?
• Has any staffer or manager spoken up?
• Who the heck thinks this is actually even funny?

The t-shirt page says the shirt was released back in March of 2011. I have faith that once this comes to Hastings' attention, they will take it down online and remove it from stores.  RIGHT, HASTINGS?

Other reputable online companies have similarly offensive t-shirts, too, like this one on Zazzle (actually, they have 8 pages of shirts involving the word "retard"):

You can get "retard" mugs, buttons and bumper stickers, too (conversely, Zazzle also has a great selection of shirts that raise awareness about our kids). If you want to get really riled up, hit some of the sites that only sell crude, obscene and offensive shirts like Foul Mouth Shirts. I won't even mention what some of those shirts say.

If you'd like to get in touch with Hastings, speak your mind on the shirt's product page. Here's a link to Zazzle's Facebook page. You can also tweet @GoHastings and @Zazzle.

Oh, and if you are new here and don't completely get why the word retard is offensive, watch this.

To me, the biggest question of all is: How is it possible for people to have such perverted mindsets against kids with special needs? How can you think making fun of them in this way is funny? That, I just don't understand—and you don't have to be a parent of a kid with special needs to wonder that.

9/26/2012 UPDATE: GoHastings has taken down the image of the t-shirt. No response from Zazzle.

1/14/2013 UPDATE: The above Zazzle t-shirt is no longer on the site, along with the many others that used to exist. While there is still a page titled "Retards T-shirts & Shirts," there appear to only be two shirts left using that word and no searchable mugs, buttons or bumper stickers with it. That's still two t-shirts too many, but an improvement.

What you can learn from one mom's special needs school victory

The lovely Maya, who blogs over at Musings of a Marfan Mom, is a mom of two. She has Marfan syndrome, a connective tissue disorder, as does her 20-month-old son, J. Her 3-year-old boy, M, has autism. Maya has a masters in public health, volunteers with the National Marfan Foundation, and does a lot of patient advocacy work. Here, she shares her experience with filing a complaint with the state about her county's early intervention services—and how she won.

When M was diagnosed with Marfan syndrom at 16 months of age, I had some experience with the laws and how to advocate. By the time J entered our state’s early intervention program at 7 months of age, I had more experience than I wanted!

When we moved out of state in January of this year, I brushed up on the proper way to transfer IEPs and IFSPs. I contacted M’s new school district and our new county’s early intervention program to let them know we were on our way, faxed our updated documents, and then followed up.

When it came to transferring J’s IFSP, one of two things should have happened. 1) The county should have decided to adopt the IFSP from our previous state, or 2) the the county should have completed new assessments and convened a meeting to create a new IFSP within 45 days. Neither happened. Although J had documented delays in nearly every area of development, he was not receiving the services he needed and was entitled to.

My first step was to send a polite but firm email to our team. I explained my understanding of the law and that I needed an explanation of why my son was not receiving services. When they would’t respond via email, I agreed to an in person meeting, where I took notes. None of the responses I received were satisfactory, so I began to look online for an advocate. I called a lawyer, who directed me to a state organization dedicated to educating children with special needs. They, in turn, referred me to legal aid for people with disabilities (who provide services for free).

A lawyer there agreed to help us. I wrote up a synopsis of our complaint and sent her relevant emails from the early intervention team. (I keep an email folder for each of my sons to better organize correspondence from therapists, teachers, and doctors. Nothing is deleted.) We decided the next step was for the lawyer to make some phone calls on our behalf. When nothing changed, we were advised we had to decide whether to attempt a mediation or file a formal complaint.

Now, each state may have a slightly different process, but where we live both of these options went through the state department of public health, as they oversee early intervention services. A mediation would have meant sitting down at a table with our county’s staff and representation for both of us, then coming to a compromise about J’s services. However, by this point we’d been in talks with the county for weeks. My husband and I felt if compromise had been possible it would have already happened. We opted to file the formal complaint. This meant I wrote a detailed description of our grievances and why we felt J’s rights were being violated. Our lawyer helped us cite the proper legal codes. Then, we submitted all of our evidence (emails, some medical records) to the state’s investigative team. A few weeks later investigators came to interview my husband and I for a couple of hours; they also met with our early intervention team separately. The investigators had a certain amount of time to make a ruling, and if they ruled in our favor their report would outline the reparations that the county must make.

Interestingly, over the course of the investigation we learned there were other issues that we hadn’t even realized, so I was particularly glad that we chose this method for addressing our grievances. Neither my husband nor I wanted it to escalate to this point, but we felt we had no other options and no one was going to advocate for our son if not us.

In the end, the state substantiated every one of our allegations! I understand this to be rare, and I believe the preparation we put into the process played a big role. I was grateful that my son would now be getting the services he so clearly needed. That said, the process took nearly 7 months from the time we were first assigned a case manager to the state’s ruling...time that my toddler isn’t going to get back.

I sincerely hope that none of you need to go through the formal complaint process, but if you find yourself in that situation, here are some closing tips:

• Most states provide a book for parents on their rights, so if you’re starting the process you can inquire about getting one. We got a book through the first agency we contacted.
• Make sure you’ve been documenting everything. Always try to communicate via email instead of over the phone so that you have a record of exactly what was said. When this isn’t possible, be sure to take detailed notes.
• If you’re not already, write every meeting date in a calendar. You’ll want to include exact dates when filing a complaint.
• As much as possible, leave emotion out of it. State the facts and your understanding of situations, but keep it at that. The state doesn’t care if you dislike your case manager because he’s rude; they care if your case manager isn’t following the law.
• Consult with a lawyer. Every state has some sort of legal aid office and since they’re free, I’d start there. In addition to providing me with legal citations, our lawyer looked over our final complaint and suggested a few edits to it, to make sure we were including all of the information the state typically looks for.

If you have further questions, feel free to contact me at marfmom @

Monday, September 24, 2012

Every mom's got a hungry heart: A Bruce tribute to special needs parents

Perhaps you are overworked, overwhelmed, over-worried, overtired, over-everythinged.

Maybe you feel like you were born to run... to your child's numerous therapy sessions.

Maybe you aren't so young anymore.

Maybe you never had a wife and kids in Baltimore. And your name isn't Rosalita.

Maybe you regularly feel like you are going down, down, down.

And then you go to a Springsteen concert on a rainy Saturday night. There's a delay, because it's outdoors and there's lightning in the area. But when it starts, you are sucked right in. It's the eve of Bruce's 63rd birthday and the man is as full of life on stage as he ever was, for four hours straight.

This one's for you, friends. Show a little faith—there's still magic in the night.

Friday, September 21, 2012

Special Needs Blogger Weekend Link-up: Join the club!

It's another weekend link-up for bloggers with kids who have special needs. All together now: Psych!

The idea

Share a favorite post of the week.

What to do

Where it says "Your name" put the name of your blog followed by the title of your post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: All I Want For Christmas Is My Own Airplane and Pilot

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, September 20, 2012

12 reasons Smuggler's Notch is special needs family vacation heaven

It was the splinter on Max's butt that nearly made me weep from happiness. We were on vacation at Smuggler's Notch, Max was due to go to camp, Dave and I had booked a kayaking session that morning and I couldn't get the splinter out (how it got there, I had no clue). So I brought Max to the special-needs program at the camp, conferred with the director, and asked if she had tweezers. "I'll find a pair and try to get out the splinter," Alisa said. "I know you have to go!"

Finding a resort to vacation at when you have a kid with special needs can be really hard. I always call ahead to make sure kids' programs can accommodate Max. Plenty of times, I've been told they do not have the staff to include him (or the willingness, though they never say it). The fact that Max is not fully potty-trained can be an issue, too. But a camp for children and teens with special needs run by a person willing to extract a splinter from a kid's butt? Wow. Just, wow.

Smuggler's Notch, located in the mountain-bordered town of Jeffersonville, Vermont, is generally a spectacular place for families (it bills itself as "America's Family Resort," and has won awards for it). But it's a particularly spectacular place if you have a kid with special needs, as I found out when we were invited to stay there for five days. Why it's so lovable:

1. The Smuggler's Notch Adaptive Program (SNAP)

This is Smuggs' program for kids with intellectual and physical disabilities, offered seven days a week. Max was beyond happy to come every day, and for good reason: They know how to show kids a great time. The program offers crafts, swimming, walks, nature explorations, mini golf, kayaking, tie-dyeing, sensory activities and f-u-n. There is no age limit. It serves about 20 kids per week, and Max had his own dedicated counselor. It wasn't just Alisa—formerly of the National Sports Center for Disability in Colorado—who was so can-do; all the counselors I observed seemed determined to show kids the time of their lives.

Five times a summer, SNAP offers Autism Mountain Camp for kids and adults with disabilities. This one's more adventurous, with sailing, tandem biking, horseback riding, and a llama trek (yes, a llama trek). During our stay, I met several other parents of kids who have special needs who'd all bought into timeshares at Smuggler's Notch because they felt so at home there, and because they loved SNAP.   

It's one of the best adaptive programs in the country; a friend who's gone for years has raved about it. Kids can stay for the day or half day and ski with trained instructors. Max informed us more than once that he wanted to come back and ski. There's also an Autism Snowman Camp offered during four times throughout winter for kids with developmental disabilities; besides skiing, kids can go on sleigh rides, dog sled, snowshoe, horseback ride, ice-skate and swim. Love that Smuggs also hosts three Make A Wish families every winter. 

3. Smuggs' other camper programs

There are five groups offered for campers ages 2&1/2 to 17 years every day of the week. Sabrina was in Adventure Rangers, which has four tracks: Adventure & Games, Nature & Hiking, Arts & Crafts and Sound & Stage. I signed her up for Nature & Hiking because we were, after all, in Vermont. As it turns out, one day of hiking was puh-lenty for her and after that she did Arts & Crafts. 

Exploring the river bed at camp

Sabrina also got to do the Adventure Overnight, in which she stayed at the Madonna Based Lodge complete with a pizza dinner, dance party, bonfire with s'mores and games. Oh, and if the regular camp experience isn't enough, there are specialty programs for kids ages 9 to 17 including Awesome! Water Camp, Survival Camp, Junior Tennis Camp, and Skateboard Champ. Warning: You may just feel a little sad because you are too old to go to camp, although age has its benefits (see: Segway Adventure and winery below).  

4. Because it's a super-nice play to stay.

Our condo was in the Kestrels community

Sweet, eh? 

Our unit had all the comforts we wish we had at home, including a huge kitchen where we made breakfast daily and a big jacuzzi tub in the master bedroom suite that comfortably fits a family of four, including kicking kids. There was cable TV, Internet access I tried very hard to resist, and an outdoor BBQ grill. Max loved the condo so much he called it "new home." 

The porch, my fave spot

5. Because it's so easy to get around

In summer and winter, shuttle buses are everywhere around the resort; you call and they come to get you, including ones that are wheelchair accessible. If you happen to have a child who happens to love riding around on buses, you might spend quite a bit of time on one. Not that I know any child like that.

6. The POOLS! OMG, the POOLS! 

The resort has eight heated outdoor pools, four waterslides and Rum Runners' Hideaway, a six-acre reservoir on top of Morse Mountain with a 25-food water trampoline and a shore-line wading area for non-swimmers. Smuggs' main pool areas: Mountainside Water Playground, with a Giant Rapid River Ride, mini waterslide and little-kid lagoon; Courtside Pool, with a flume waterslide; and Notchville Park, including the 140-foot Twister Waterside, a Raven's Roost Climbing Tower and a Lily Pad Walk. This one was our favorite; it was pretty uncrowded, with lots of stuff to do.

Sabrina walks the walk

Max pad-hopped, too

Max takes aim

The quietest pool area of all was at the Aquatics & Exercise Center in the North Hill; we liked going here for pre-bedtime dips.

7. Because you never, ever, ever run out of activities.

When I first flipped through the Resort Information Guide, I was floored by the number of family activities. You could go on one of twenty-plus guided nature walks or hikes. Make sock puppets. Play Giant Tic Tac Toe and other oversize games. Tie dye. Or do a Zip Line Canopy Tour, take tennis lessons, and try your hand at the driving range or disc golf, all for an additional fee. 

The FunZone, a gigantic indoor play area with a huge pirate-ship bouncy house, giant slide, obstacle course, table games and arcade.  

Sabrina and Dave went on the Gone Fishing trip, where she showed an amazing amount of patience I'd like her to apply to doing homework.

Sabrina bungee jumps. "MOMMMMMMY! I'm flying!" she screeched. Perhaps you heard? Max chose to watch.

Best $90 bucks we've ever spent (for a 24-hour rental). We refused to participate in Max's scheme to drive one home.

One morning, Dave and I went kayaking on a quiet pond. We could have brought the kids, but given that once when we were dating we almost broke up during a kayak ride where we couldn't paddle in tandem and nearly went down a waterfall, we thought it might be wise to exclude them. "I call them divorce kayaks!" the guide from Green River Canoe and Kayak told us, cheerfully. We kayaked separately, and peacefully.

Kevin bought boards in case we wanted to try paddle boarding. Dave said no way, and then of course I was all "I'll do it!" And I did. For maybe six minutes. But I stayed on! The trick, I discovered, is to pretend your feet are Krazy-glued to the board. 

8. Because there's a ton of pure grown-up fun, too.

Aqua-Volleyball? Check. Hot River Massage? Check. Zumba Fitness Party? Check. Yoga? Check. Cooking classes? Check. Chocolate tasting? Check. Creative classes, including card marking, beading, and sculpting? Check, check, check! 

Hel-lo, Segway Adventure! I've always wanted to try one, and Dave and I gleefully zipped around for an hour (don't be impressed, there's no skill involved). 

My masterpiece from art class. I was the only student at the time and had the wonderful instructor, Nancy, all to myself. I learned some great techniques, and will be auctioning this off for a starting bid of $1,000,000 in the near future.

9. The cool evening fairs and activities

There were free family events every evening, including Movies on the Green, Twilight Karaoke, bingo, a Saturday night DJ party, and a bonfire sing-along, as well as special events like the Family Splash Down party at Mountainside pool and a marionette show.

The Smuggsational Family Social

Sabrina played every single game. Twice.

Max hung out with Mogul Mouse and went for a ride on a tractor

Sabrina and Dave at the waterball toss

If you want to ditch the kids for the evening (not that I know any parents like that), you can drop them off for Kids' Night Out at Treasures, by day the resort's Child Care Center for tots 6 weeks to three years old. There are giant fish tanks in every room and toys galore. SNAP's lovely deputy director, Shay, was there and the kids did not want to leave when we came to get them. 

10. Because there's good food.

We most often ate at the Morse Mountain Grille, a reasonably priced-place with, Dave says, the best chili he's ever had—and plenty of homemade mac 'n cheese for Max. One night, we dined at the Hearth & Candle Restaurant, a kid-friendly gourmet spot with a delicious cheese platter and the most unique fish & chips I've ever had (potato-crusted cod with citrus herb risotto and asparagus).  

I judge places by their soup, and the tomato bisque was outstanding.

11. Because there's great stuff to do in the area, too. 

While the kids were in camp, Dave and I tooled around. We went to Stowe once, our old stomping grounds from vacay two winters ago. We loved the oversize omelets at 158 Main Restaurant and Bakery in Jeffersonville. We drank too much coffee at Brown and Jenkins Trading Co. (worth ordering from).

One afternoon, we visited the Boyden Valley Winery and did a tasting with lots of yummy iced wine.  

 Random old home I was obsessed with

12. Smuggs' I-Did-A-Cart

This is a longtime Smuggler's Notch tradition where families build carts out of provided cardboard boxes, paint and craft stuff like pipe cleaners, then let it fly down a ramp.

Max and I paired up to make a purple school bus.

Sabrina and Dave went for maximum size.

Max paints a "headlight."

It was super-fun to see everyone making carts. There was judging—most creative, best height, longest flight off the ramp. Max snagged second-place for creativity, but we didn't care much about the judging; we just had ourselves a great time.

Note: Thanks to Smuggler's Notch for hosting us. All opinions (and calories) are my own.

Wednesday, September 19, 2012

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

Monday and Tuesday were the Jewish New Year. I went to temple and prayed to be inscribed in the Book of Life (vastly preferred over the Book of Death). I prayed for good health for our family and friends. I added a prayer for God to continue to give me the strength and smarts to raise Max. And I prayed for us to find a way to include Max in temple.

In the past year, I have experienced much frustration trying to find a local congregation that offers services for kids with special needs. It seems like there are more options in major cities, but once you hit suburbia, not so much. Friends have informed me of programs that aren't so close to where we live. Thing is, I would like to find a temple with inclusive services in our neighborhood, where our family can be part of a community we see throughout the year.  I don't think this is too much to wish for.

The challenges we've faced are hardly unique to our religion; I've heard from parents of other faiths who have similarly felt like outcasts in their congregations. If ever there was a place that should welcome children with disabilities, you'd think it would be a house of worship. But that hasn't been our experience.

When we moved to our neighborhood 10 years ago, we joined a temple that had a friendly, down-to-earth vibe. For years, we were content there. We liked the community, the family events they had on the Sabbath and at holidays, the middle-aged couple who ran the children's Rosh Hashanah service with the over-the-top charm of a Saturday Night Live skit. Max didn't join in; he has sensory issues, and crowds and noise unnerve him. So we'd leave him in the temple's daycare during services. Sometimes, I'd attend temple events alone with Sabrina, or Dave would take her.

When Max was 8, I grew disgruntled; he didn't belong in kiddie care during services. Sure, he was content, but we could have just as soon left him at home with a babysitter for all the spirituality involved in playing with toys in a nursery room. Max needed a program that would engage him, but not overwhelm him.

As I sat in the pews last September and listened to the rabbi's speech about her child's hospital stay and the importance of treating the sickness with kindness, I seethed. It took every speck of willpower I had to not stand up amongst the sea of congregants and shout "WHAT ABOUT MY CHILD WITH SPECIAL NEEDS?!"

A friend recommended I get in touch with the temple's head of community to discuss Max's needs. We exchanged messages; finally, we set a time to chat. The day before, she sent an email that said, "I want to be clear that I am not sure what I can provide in light of the financial difficulties facing synagogues."

Ooof. I felt as if a door had been slammed shut in my face. To be sure, temples are facing financial challenges. To be sure, ours had just undergone a multimillion dollar renovation (making it more accessible to people with disabilities in the process). How much could it cost to run a service for kids with special needs?! Was it possible there might be a special ed teacher or pediatric therapist in the congregation who could help? Weren't there any options to discuss?

I was so put off, I never had the conversation. That's when I first thought about changing temples. A few months later, the director of congregational learning emailed an invite to a summit happening at a temple in another town on building inclusive communities. It was taking place on a Sunday, from 12 to 4. Did I want to go?

Um, well, nope: I did not want to be the person charged with spearheading special needs programming. It wasn't that this wasn't a priority for me; it was all the other priorities in my life related to Max.

In the last week, my priority was getting Max's blood tested to make sure levels of his anti-seizure medication are OK. My priority was calling his teacher to discuss alternative ways for him to do homework, given that writing is difficult for him. My priority was emailing back and forth with his speech therapist about whether Max might ever be able to articulate the letters p, b, d and k, since he's not yet saying them. My priority was emailing with his occupational therapist to discuss what size t-shirts I should buy so she and Max could practice lifting and them off his head, as he is not yet able to dress himself. My priority was to research a stroller that would look non-babyish for a boy who is almost 10, because Max tires when we walk long distances and he's getting too big for my husband to carry him.

Making sure my son can function, encouraging his development, keeping him healthy and enabling him as best I can are my priorities as the mom of a kid with special needs. I would like a temple to make it their priority to include my son, and kids like him, in services. I will be part of a committee, yes, but I am unable to make it my mission. I am already in charge of so much. I am already advocating for Max in many areas of his life. Help us, for the love of God.

I started calling around to congregations in our area to see what our options were. Sample call:

Me: "Hello! I am calling to find out if you have services or programming for kids with special needs at the temple."

Lady on phone: "Not that I know of, dear."

Another temple had only an interpreter for the hearing impaired. The majority had nothing. Finally, I got in touch with the congregation that I'd heard had dedicated special needs services. The rabbi seemed warm on the phone. The services, he explained, had been created for kids with autism; no other kids in the congregation had cerebral palsy, as Max does.

"Oh, that's OK, Max passes!" I said, laughing. And it's true: Max's speech difficulties and sensory issues sometimes make people think he has autism.

This is the temple we went to on Rosh Hashanah. I took Max there beforehand for a quick walk-through; he kept shaking his head "No" (transitions to new places are tough). That first day of the holiday was a madhouse. Max stood outside the temple doors, wailing. He refused to go in. I had my doubts as well; I missed the cozier setting of our old temple. Dave took Max home, Sabrina went to a program for grade-school kids, and I headed to services with my brother-in-law.

First, though, I peeked into the special needs service. There were a handful of families, mostly with teens, all participating enthusiastically. I met the woman who runs special needs programming, and she seemed both welcoming and driven to find a way to include Max.

We might be able to ease Max in by coming more regularly; there are Sabbath special needs services throughout the year. Once he felt more comfortable, we could possibly coax him into attending events, too. We're lucky he's been part of The Friendship Circle, which provides programs for Jewish kids with special needs around the world. The other choice is do some version of services at home. For Rosh Hashanah, we could read a book, eat apples and honey for a sweet New Year, and get across the key message of this holiday: being better people and treating others with kindness.

It's a definite possibility. But I am not willing to give up on Max going to temple, for all the reasons any parent of any kid takes them to a place of worship—and because I would like attendance to be part of our family life. With the growing awareness about children with special needs, perhaps more houses of worship will commit to special needs services and programming in upcoming years, ones geared toward kids with sensory issues and kids with intellectual disability.

It is the Jewish thing to do. It is also the Catholic, Protestant, Episcopalian, Islamic and Hindu thing to do. Synagogues, churches and mosques seem aware of the necessity to be physically accessible to people with disabilities. You'd think they would feel compelled to answer to a higher authority when it comes to spiritual accessibility.

I sat next to my brother-in-law in the crowded sanctuary, chanted the prayers, sang the familiar melodies. I had some hope. But I felt so very alone.

Update to this post: 
Places of worship for kids with special needs: And then, a mini miracle

Image: Flickr/Ruth HB

Tuesday, September 18, 2012

Speech tips for kids with speech delays (from a very creative speech therapist)

These speech tips for kids with speech delays and challenges are from Kim Lewis, a pediatric speech-language pathologist in private practice in Greensboro, North Carolina. 

Kim's blog, Activity Tailor, is filled with creative, parent-friendly ideas for encouraging communication. She kindly shared some here, too!

I’m from North Carolina, so the days aren’t yet crisp. It’s the waxy smell of new crayons and neat, colorful stacks of construction paper that are the harbingers of autumn.

One of the greatest assets of the return to school is the more structured child care environments. By reinforcing classroom activities at home, you can maximize progress towards speech and language goals, and have fun in the process! Even small changes to your morning routine can have a big impact on communication whether you are working on gestures, vocalizations or increasing vocabulary.

Wake them up with song. Whatever your music preference, sing a couple of lines (no need for the entire song) and slip in your child’s name or some other customization if you choose. Music and lyrics seem to draw out communication of all kinds, so stick with it! Kids do best with repetition and are more likely to try and repeat what they hear frequently and associate with a particular time. So beware, choose something that you can tolerate greeting you at 6am on Sunday! A sing-a-long might consist of rhythmic head or hand movements, any vocalization or some of the words themselves.

Let them choose food. Meals are a great opportunity to offer choices and encourage requests. You don’t want to run a diner, but you can hold up two cereal choices or two jelly choices and encourage verbal and/or gestural communication. Most kids love the feeling of control that making a selection offers. And it’s okay to offer the same two choices day in and out; the second choice doesn’t even need to be something that they like. “Grape (wiggle the jar) or strawberry (wiggle that jar)?” When they indicate their preference, reinforce it, “Grape!  Today, it’s grape!”, even if you’re on a two-year streak of grape.

Create a theme. Thematic units offer the chance to build both receptive (what we understand) and expressive (what we say) vocabulary. Swing by your local party store, grocery store or discount retailer and pick up seasonal paper goods (or more eco-friendly washable choices). For back-to-school time, you might consider placing a toy bus as the table centerpiece, and going with bus-themed placemats, plates and napkins. Even just sticking with the color theme—yellow—is fine). With the above place setting I would count how many pumpkins we see. I’d repeat the vocabulary: “Toast is covering the pumpkin," "The pumpkin on the napkin is wiping your face," “Use the pumpkin straw.”  Once you are on the lookout for seasonal themes, you’ll see possibilities everywhere; grandparents often seem particularly keen to assist in this area. Have your child’s teacher or daycare provider give you their classroom themes a few weeks in advance so you can match vocabulary. Popular fall themes include apples, leaves, pumpkins, and  turkeys.

Let kids style themselves. Getting dressed is another opportunity for making choices, but, again, rather than offering the entire closet simply hold up two options, “Red or blue?” As with breakfast selections, reinforce any verbal or gestural communication. “Red for today!  Our fifth day of red!” If you are particularly inspired by seasonal themes, you can add appropriate socks or accessories such as a necklace or pin. This has the added benefit that others—cashiers, other children—will often comment on, using target vocabulary throughout the day: "Oooh, honey, I like your apple necklace!”

Pack it up! Here’s a chance to repeat, repeat, repeat each and every school day. “Open!” as you zip open the backpack. “In!” as you insert the folder.  “In!” as you put in lunch. “In!” for all the other items that need to be delivered to school. “Close!” as you or your child zip it shut. Pair your words/voice to the action and encourage your child to imitate either the action or the vocalization. The long “o” of “open” and the short “i” of “in” would be great approximations of the words and give you two contrasting sounds and mouth movements to work on.

Do a daily debrief. Whether you pick your child up at school or greet them later in the evening, pull something concrete from their folder, such as a painting or drawing, with a “Wow!  This looked like fun!” For a non-verbal child, you might have them point to an item on the page, hold their hand up to a handprint or add your own comment, “I see a lot of purple on this!” By reviewing activities that happened that day, you will help reinforce the concepts addressed. Having an actual item in hand will also encourage more spontaneous language from a verbal child then the more abstract “Did you have a good day?” and provides you with context if clarity of speech is an issue.

Children adore traditions and find comfort in rituals, so while you might feel slightly mad repeating the same tasks and dialogue, this is one of the best ways to increase communication.

Kim is a member of the American Speech-Language-Hearing Association (ASHA), which credentials audiologists, speech-pathologists, and speech, language and hearing scientists here and internationally and has more than 15000 members. 

Image: Emerson Radio Hot Wheels boombox

Monday, September 17, 2012

A new app to make parents' lives easier, happier, better!

When Max and Sabrina were little-little, daydreaming at work was often of the "What are the kids doing now?" variety and the "I wonder how Max's therapy is going" variety (and sometimes the "I sure could use a vacation" variety). Now that they're older, and in school for most of the day, I wonder less. The kids have also gotten in the habit of calling me at the office with important updates like "Mommy! We need to order more lanyard!" (Sabrina) and "Ohmmmy! Ishney ooze!" (Max—translation: "When are we going on a Disney Cruise?").

Our sitter calls less frequently these days and I've wished there were an easier way to stay connected; she is my kiddie lifeline when I'm at the office. So when I was asked to check out Karoo, a new free app from that helps you connect with your babysitter and family, I was all bring it on.

The app is simple to navigate. You can share updates about the kids, plus photos or videos, on a timeline, then invite your sitter—along with family and friends—to do the same.

Your sitter can then literally keep you posted on what the kids are up to. She can also keep track of meals and meds, even diaper changes and naps. (Unfortunately, the app cannot convince older kids to take naps—I miss those days)!

This app could come in particularly handy if you have a kid with special needs who gets therapy while you're at work; the therapist could take pictures of certain exercises, say. Or send a "Hooray!" shot to show that your child is doing something awesome. Obviously, she could simply take photos and zap them to you but I like the idea of having all photos (and memories) in one handy place.

I particularly like the "milestone" icon you can tap to pick from a list of tags; of course, I starred the video of Max walking up the stairs by himself for the first time. If you have a kid with special needs you know that "milestones" are often more like "inchstones," and there are plenty of those—you can click "art" or "tummy time" or "kicks a ball" or "eating with a spoon" and, man, I cannot WAIT to click "potty time." If you're a working mom, you know you fear missing those "WOW!" moments, and so at least the sitter can capture them and share with you so you can squeal in your office.

If you're a working mom, how do you stay connected with the kids during the day?

This post and accompanying social media shares are part of a compensated program through Women Online/The Mission List. All opinions are my own!

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