Parents Blogs To The Max

The Best States To Live In If You Have A Kid With Special Needs

May 7, 2013 at 8:00 am , by

Only fifteen states provide support services to a significant number of families with children who have disabilities, per United Cerebral Palsy’s The Case For Inclusion report. Recently released, it tracks the how well Medicaid programs in all 50 states and the District of Columbia serve those with developmental and intellectual disabilities.

These are the 10 states serving the highest number of families that have kids with disabilities; they include a mix of states with both big and small populations, along with richer and poorer states in terms of median family income (New Hampshire is the second richest, for instance, while Arizona is considered less affluent):

1. Alabama

2. Wisconsin

3. New Hampshire

4. Arizona

5. Montana

6. Louisiana

7. Minnesota

8. Vermont

9. New York

10. California

The states where Medicaid supports the lowers number of families that have kids with special needs: Idaho, Iowa, Arkansas, Illinois and Maine. Sadly, this may not be news if you live in one of those states.

In general, the states providing the best Medicaid services for people with intellectual and developmental disabilities are Arizona, New Hampshire, Oregon, Vermont and California; the lowest-ranking ones are  Virginia, Illinois, Texas, Arkansas and Mississippi.

The heartening news is that despite our continuously challenged economy, many states have made real improvements in the quality of services provided—although as the report notes, “There is still work to be in ensuring that kids and adults with intellectual and developmental disabilities can enjoy the same freedoms and quality of life as all Americans.”  Especially in terms of the care our children will need down the road; waiting lists for residential and community services remain high.

Support more quality Medicaid programming for those with disabilities by citing this report and contacting your Congressional rep (find contact info here).

From my other blog:

Another one of those unexpected milestones

How not to encourage your child’s obsession

How did you tell friends and family your child had special needs?

 

Image of U.S. flag in heart shape via Shutterstock

A Prom For Teens With Special Needs

May 3, 2013 at 7:30 am , by

Students with special needs nominated to be prom queens and king: It’s happened a lot in recent years. I’ve loved that trend, and whenever teens with different abilities are included in mainstream activities. Sometimes, though, it’s awesome to see kids with special needs banding together and doing their own thing. That’s what happened this Wednesday at Tahquitz High School in Hemet, California, which hosted the first prom for students with special needs in the district.

A special education teacher organized the event, as reported in The Press-Enterprise, which attracted 160 students. They arrived dressed up, posed for prom photos, danced a lot and generally had a great time (you know, like any teens). Not disclosed: Whether anyone spiked the drinks. You know, like any teens.

There were fifty general ed students on hand who’d volunteered for the event, and who surely picked up some valuable lessons.  As one told a reporter,  ”Don’t judge a book by its cover.” (see a gallery of photos here).

I’d love for Max to experience a prom someday. And if he dances up a storm with the friends he loves at school, well, that would be all sorts of amazing. Especially if he spikes the drinks.

From my other blog

How did you tell friends and family your child had special needs?

How NOT to encourage your child’s obsession

A guy with Down syndrome becomes a web victim, and his parents sue

 

Photo credit: Stan Lim, The Press-Enterprise/PE.com

My Moment Of Autism Awareness

May 1, 2013 at 8:22 am , by

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

Yesterday was the last day of Autism Awareness Month. But for us autism awareness is year round. Over the last five years (since Norrin’s diagnosis) autism has become part of our normal and it’s been easy to take it for granted.

I expect to come home from work and find a therapist working with Norrin.

I expect Norrin to be in school twelve months out of the year.

I expect him to be a small class of six kids and three teachers.

I expect IEP meetings, evaluations and social workers showing up at our door.

I expect him to have difficulty transitioning from one routine to the next.

I expect him to have difficulty  with socialization.

I guess what I’m trying to say is: I’m used to autism by now. I’m used to way it has altered our lives.

But still there are moments when I forget.

Like this weekend when went to a kid friendly amusement park. And right before leaving, we walked into the gift shop. Norrin stood at the door, scanning the store before he saw what he wanted and made a beeline for it.

It’s a chunky yellow school bus. In big bold letters I see: 18 months – 4 years old.  A “baby” toy. (Norrin is seven.)

Norrin’s been eyeing this school bus the last three times we visited the park. And each time I’ve said no.

And I was ready to say again.

I know. I know. I know I shouldn’t care about these things. I know to look beyond time tables and milestones and age appropriate toys.

“He asks for it every time we come here. Who cares about the age,” my husband said. And I gave in.

But I refused to give Norrin the school bus in the car. He would have to earn it. I told him he could have the bus when we got home, after he cleaned his room.

As soon as we walked in, Norrin took off his shoes and socks and went to his room and moments later came back out. “I’m all finished,” he proudly proclaimed. He grabbed me by the hand and I followed him into his room.

All the toys were picked up. His books were put away. I could tell he was trying so hard to stand still. He was smiling, his big brown eyes sparkled. And while his hands were at his sides, his fingers were wriggling. His eager anticipation made me smile.

“How do you feel?” he asked.

“You did a good job. I feel proud.”

When I handed Norrin the school bus, he quickly ripped it out from its box and gathered some of his toy figurines to place inside. I watched him as he held the school bus at eye level, his free hand flapping with excitement.

“How about we play like this,” I said.  Then I showed him how to spread out his figurines all over his room. And then I showed him how to drive the school bus around, picking up the figurines for school. While Norrin was wheeling the bus, we sang “Wheels on the bus.”

I watched as he played with this school bus appropriate for a child years younger than him and he still needed help. We still continue to work on Norrin’s imaginative play skills.

Suddenly, it was like a blue light bulb just went off. And autism had become very real for me. I needed a moment to be aware of it and accept it. I’ve had these moments before. And I suspect I’ll have them again.

I like to think that I am autism aware on a daily basis. But sometimes awareness catches me by surprise.

Does autism catch ever catch you by surprise? What are your moments of autism awareness?

The Weird Hope I Have For My Child With Special Needs

April 30, 2013 at 7:30 am , by

I’ve watched this video of Jack Carroll auditioning for Britain’s Got Talent again and again. Throughout the routine the 14-year-old, who has cerebral palsy, poked fun at himself and the challenges he faces, opening with the line “Don’t worry, I know what you’re thinking: Harry Potter has had a nasty Quidditch accident.”

Jack is genuinely funny, and he’s got great timing, too. One of the judges called him “a comedy genius.” As I watched him perform, I kept thinking: I hope Max can someday make fun of his own cerebral palsy.

If that sounds weird, I can assure you, it’s not something I’d ever put down as one of Max’s therapy goals. But here’s the thing: Jack is able to own his disability. As he said, “A lot of times in comedy, your strengths are your weaknesses.” If you yourself  display “the elephant in the room” (as he called it) then it makes people more comfortable.

I think of the gapes and stares Max gets from other kids. And how, if he were able to be self-deprecating, it would make kids more cool with him. Right now, he’s at the stage where he’s becoming aware that he has cerebral palsy. I don’t know when and if he’ll have the awareness to joke about it, I just hope he does.

Yes, I do mind when comedians make people with disabilities the butt of their jokes. That may sound contradictory, but consider this: When a person with disabilities can poke fun at himself, it makes him less of a person to be pitied, less of a victim. He can bust clichés. He can shift the power.

And I want my son to have all the power he can to charge through life.

From my other blog:

Free bikes and bike lessons for kids with special needs

Really fun therapy for kids with special needs: It’s called “pinball”

And now, a word from Max’s sleep-deprived dad

Image: Screen grab/YouTube video

A Video That Educates Kids About Sexual Abuse: Watch It Here

April 26, 2013 at 7:30 am , by

The stats are shocking and sad: 1 in 4 girls and 1 in 6 boys are sexually abused by their 18th birthday, according to data compiled on adult men and women by the Centers for Disease Control and Prevention.

We live in a time when parents are fully aware of the need to speak to their children about sexual abuse, and where there is excellent information on how to do so (like this Parents Magazine article, Protect Your Child from a Predator). Sometimes, a book is a helpful way to open a discussion—why I recently read Jill Starishevsky’s book My Body Belongs To Me with my daughter. The author is an Assistant District Attorney in New York City, where she’s prosecuted hundreds of sex offenders.

In these YouTube-centric times, video can be a great way to engage a kid on a subject. So I was glad to find out yesterday that Starishevsky’s created a four-minute animated film, based on the book, to educate kids and empower them to speak up should anything happen. It was created to be accessible and appropriate for children as young as 3-years-old, and meant for parents and educators to watch with kids and open a dialogue on the topic. I think it’s excellent, and my daughter and I will be watching it together this weekend.

From my other blog:

Happiness is not a purple light-up toothbrush

A great new way to describe kids with special needs

How to ace an IEP: Tips from a parent pro

Image/still from My Body Belongs To Me video

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