Tuesday, July 15, 2014

Recruiting Family Stories


Recruiting Family Stories

As a follow up to “The Waiting Game” and the “No Paid Services Caseload” campaigns, we are planning to publish a booklet of stories that show people who have received services from DDA as a result of improved funding and policies in recent years.

We want to show the Legislature that the money they have appropriated for the unserved (in the 2013 and 2014 legislative sessions) is actually helping many people in a very real way all over the state.

An additional benefit will be to show the variety of routes that were used to gain services, such as:
  • Calls to the DDA hotline;
  • Help from a peer support network or organization (Arc, Parent/Family Coalition, Parent to Parent, Self-Advocacy group etc.);
  • Connection to a case resource manager.
This will give us valuable information about those successful processes and routes that we can use to educate and help more people.  If they now receive MPC, but still need respite or another DD-specific service, hopefully that will be information we can also use.
If you or someone you know has moved from the No Paid Services caseload to paid services within the past few years, and you would like to share your story for this campaing, please contact Betsy McAlister at: dbmcharger(at)frontier(dot)com. Parents can remain anonymous, but we would hope to be able to have representative stories from as many parts of the state as possible.

This should be an exciting opportunity to showcase our advocacy and continue to support families and individuals with intellectual and developmental disabilities.

Tuesday, June 24, 2014

IEP Parent Partners: Fostering Positive Relationships Between Families and Schools

We love to hear what families are doing to create a better community and improved supports for their children with disabilities...and we especially love to hear when it's working.

When happy rumbles about a program to help families navigate the IEP process started rolling in from Snohomish County, our ears perked up.

While there are many good programs and supports in place to help families advocate for their child when problems emerge during the IEP process, The Arc of Snohomish County looked around and asked: What if we help parents before there is a problem? The answer to this question became the genesis for the IEP Parent Partner Program.

The fledgling program seeks to help families, particularly those facing their child's first IEP, understand the IEP process, what's required, and what to expect. Families are paired with a Parent Partner who acts as a guide, helping to empower families with knowledge and confidence in their role. There's a training component to to program, plus one-on-one support that takes place before, during, and after the IEP meeting.

"It's not advocacy with a capital A," says Jamie Coonts, Program Director for The Arc of Snohomish County. "There are other programs out there that know about the law. We're more in a collaboration role [between families and schools]."

Coonts explains that a lot of problems arise due from lack of communication and the parent feeling that their input isn't valued. Often, the parent goes into the IEP meeting with a mental list of things they want to see and those things are specific services.

"We get them to think about the most important things to include in the IEP and to really think about why those things are important."

The goal is to help families identify the underlying needs, rather than specific solutions, so that the team can brainstorm how to meet those needs. The approach inspires collaboration and reduces the risk of families feeling dismissed.

Parent Partners also encourage families to give input into the IEP draft that the school works on prior to a meeting. It's an action that not only helps parents clarify their needs, it also strengthens the relationship between the parent and professional team members around the table. According to Coonts, the practice is gaining a lot of traction with schools. One school district liked the the approach so much, it asked for permission to share the worksheet for all families of students with IEPs.

In keeping with the intent of the program to be a navigator, the role of the Parent Partner during the meeting is specifically defined. "At the meeting, their primary role is notetaker," says Coonts. "Really, the only time they should be speaking up is if something needs to be clarified. They are not there to say, I think this... or to participate." After the meeting, the Partner helps debrief and "decompress" with the parent to assess how they feel and if any follow up steps might be in order to clarify what took place.

Coonts is encouraged by the response to the program so far and hopes to see it continue. "It's evolving," she says. "I think it's going to be a really good thing."

We think so too!

To learn more about IEP Parent Partner Program, contact Jamie Coonts at The Arc of Snohomish County.

Monday, June 23, 2014

Inclusion Is....


This letter came home in Nate's backpack on the last day of school and is from a student in his class who I've never met.  I'm speechless.

Sunday, June 22, 2014

Summer Vacation is an Oxymoron by Rachel Nemhauser


In 24 hours my kids will officially be on Summer Vacation and it's fair to say that I'm officially starting to panic.

I know, I know. Summer Vacation means sunny weather, popsicles, lazy days, trips to the beach and a reprieve from nightly homework battles. It means slower mornings and long, balmy evenings in the backyard. Spontaneous weekend getaways and quality family time.  Suntans.  Fruity drinks. Freckly noses. I get it, I really do.  I used to love summer and look forward to it all year long.  Now I would say I don't so much "look forward to it" as "count down the minutes till school ends in a frantic combination of dread and denial'.

Ok, that sounds dramatic, but it also pretty accurately describes how I feel right now. 

In my house, Summer Vacation is an oxymoron. There is no vacationing for me over the summer.  Instead, there is a moderately tyrannical but incredibly charming 9 year old with developmental disabilities to supervise, entertain and support for the next several months (along with his older brother Isaac).  After many months of successful teamwork with the school I can't help but even feel a secret sense of abandonment when we go our separate ways in June. I'm aware it's irrational, but I thought we were in this together!

For me, Summer Vacation means my house is under siege as Nate fills his long, lazy days finding new ways to "decorate".  Even short periods of quiet mean trouble is brewing and must be investigated. Summer means that although we have twice as many televisions as we do children, my boys still have battles over viewing choices.  With one of the  battle participants being largely nonverbal, these fights get loud, shrieky and physical almost immediately.  Summer means trying to fill long days and weeks with things to do when playdates, birthday invitations and sleepovers are almost nonexistent.  My kids are always around, usually bored, and often causing trouble.

I think what it really comes down to is that summer means spending a lot of time with my kids, and that's not easy. Summer reminds me that I always envisioned wanting to spend loads of quality time with my children, and that my reality hasn't really met my expectations.  I love my time with them, but I also love when they go away for a little while every day.  Nate's disability ups the ante, making every day he's not in school a little more intense, laborious and frustrating than you'd expect.  Every well  meaning mother who tells me how much they look forward to summertime unintentionally makes it a little worse by reminding me that we're different.

The good news is that the first day of school is only a few months away.  Also, Nate looks exceptionally cute in a bathing suit and sun hat, and will still squeal unselfconsciously while water laps on his toes. That might not get me through the whole summer, but it definitely brightens any day.  I will spend my summer looking for all the ways my kids make me smile, and  I will try to steal some actual vacation when I get a chance.  Mostly, though, I'll be counting down the days till September, when school starts again, panic dissipates, and I reclaim my peaceful daytime reprieve.

Have a great summer, and stay strong!




Wednesday, June 11, 2014

Percussion Ensemble by Joy Caldwell


So I went to my daughter Jessica's "percussion ensemble" performance at her High School band concert tonight... It was very sweet and I loved seeing Jessica's beautiful smiling face on the stage with her peers (some with similar needs, others who were there to support them). (Jessica has Down syndrome, cerebral palsy, and autism). She and her classmates seemed to really enjoy "performing" their music for us! And they did a great job!

BUT... maybe it's just me... but it left me with a bittersweet taste in my mouth. Here's why. We were at a HIGH SCHOOL CONCERT with TEENAGERS! but the 3 songs that the "special ed percussion ensemble" played were: "Mary Had a Little Lamb", "Twinkle, Twinkle Little Star" and "Down at the Station" - all 3 PRESCHOOL songs! Does anyone else see a problem with this or am I the only one?!

Please don't misunderstand. I honestly don't think that the teacher or any of the other staff thought twice about it and they were all patting themselves on the back for the wonderful way that they "included" our kids with special needs in their concert - having them open it up.

I know that their motives were right but the thing that bothers me the most is that they didn't really realize the message that they were sending everyone there (including the teen percussionists). "It's okay to treat TEENAGERS with disabilities like pre-schoolers because of their disabilities..." Am I just being hyper-sensitive or does anyone else hear the message of "condescension" in this? After all, they seemed to enjoy it!

Personally, I find this disrespectful. My daughter is FIFTEEN years old now - she's not FIVE anymore. In fact, we are working very hard for her to learn how to act like a young lady - like a FIFTEEN year old - NOT A FIVE year old!! Truth be told, Jessica especially enjoyed the faster, more upbeat toe-tapping music that succeeded their toddler-esque performance and I really truly believe that our kids would be much better served by truly being included [even if playing smaller bit parts in the "regular" bands] than being made to look like preschoolers with the bodies of teenagers. Jessica and some of her peers may have some significant differences but she/they have FIFTEEN + years of life experience and deserve to be respected as such. What do you think?

Monday, June 9, 2014

More Diversity, Please...



When Archie Comics recently announced the addition of a character who uses a wheelchair, it also revealed a genuine need for more stories (books, comics, tv, movies) that reflect the diversity of real life. It not only reminds the broader community of the value of individuals with disabilities, it's a powerful affirmation of worth for the individual to see herself or himself depicted in stories that everybody shares and talks about.

Being excluded from the media is not unique to the disability community. The We Need Diverse Books campaign is focused on persons of color; however, it's a push that ought to also include persons with disability.

There are some very good books for middle grade and young adult readers that do a fine job of depicting individuals with disabilities or other differences that change the way people view them (and they view themselves). Whether or not your child reads, everyone can be read to (or with).

Here's a list of a few that are well worth adding to you and your child's summer reading list:

Alchemy and Meggy Swann
by Karen Cushman
Ages: Middle Grade
From the Children’s Literature Network:
Meggy's mother was glad to be rid of her; her father, who sent for her, doesn't want her after all. Meggy is appalled by London, dirty and noisy, full of rogues and thieves, and difficult to get around in—not that getting around is ever easy for someone who walks with the help of two sticks. Just as her alchemist father pursues his Great Work of transforming base metal into gold, Meggy finds herself pursuing her own transformation. 


Mockingbird
by Katherine Erskine
Ages: Middle Grade
From the publisher:
Caitlin is a bright fifth grader and a gifted artist. She also has Asperger's syndrome, and lives in a world of her own. Her brother, Devon, was the one who always helped her get by. But a middle-school shooting took his life. Now she has only her widowed father to rely on, and he has problems — and grief — of his own. Can a wise school counselor help Caitlin reach out to a world she's never understood? With Devon gone, will she have the courage to live fully on her own.


Rules
by Cynthia Lord
Ages: Middle Grade
From the publisher: Twelve-year-old Catherine just wants a normal life. Which is near impossible when you have a brother with autism and a family that revolves around his disability. She's spent years trying to teach David the rules — from "a peach is not a funny-looking apple" to "keep your pants on in public" — in order to stop his embarrassing behaviors. But the summer Catherine meets Jason, a paraplegic boy, and Kristi, the next-door friend she's always wished for, it's her own shocking behavior that turns everything upside down and forces her to ask: What is normal?


Wonder
by A.J. Palacio
Ages: Middle Grade
From the publisher:
August (Auggie) Pullman was born with a facial deformity that prevented him from going to a mainstream school—until now. He's about to start 5th grade at Beecher Prep, and if you've ever been the new kid then you know how hard that can be. The thing is Auggie's just an ordinary kid, with an extraordinary face. But can he convince his new classmates that he's just like them, despite appearances? 


Marcello in the Real World
by Francisco Stork
Ages: Young Adult
From the publisher:
Marcelo Sandoval hears music that nobody else can hear — part of an autism-like condition that no doctor has been able to identify. But his father has never fully believed in the music or Marcelo's differences, and he challenges Marcelo to work in the mailroom of his law firm for the summer . . . to join "the real world." There, Marcelo meets Jasmine, his beautiful and surprising coworker, and Wendell, the son of another partner in the firm. He learns about competition and jealousy, anger and desire. But it's a picture he finds in a file — a picture of a girl with half a face — that truly connects him with the real world: its suffering, its injustice, and what he can do to fight.

For more books that reflect the lives of children with disabilities, visit the American Library Association Schneider Family Book Award for past winners.

Saturday, June 7, 2014

New Parent Advice

What advice would you give parents on the day their child is diagnosed with a developmental disabity. Be sure to have tissues handy when you watch this!