Playdates for special needs kids just got easier

If you’re like me, setting up playdates for your child with special needs is a challenge. Like most parents of special needs kids, I feel pretty isolated at times. But tonight, I learned about a free new resource called Special Playdate that has the potential to change all of that. Special Playdate connects parents of children with or without special needs seeking playdates. On tonight’s The Coffee Klatch, Marianne referred to Special Playdate as the Match.com for children of special needs, which I thought was both funny and very appropriate.

I signed up tonight and I hope to connect with some parents in my area soon. The more parents who sign up for this service, the more opportunities our children will have to connect socially. There are benefits for us as parents, too — conversation with parents who understand, potential respite opportunities and more. I hope you’ll sign up and spread the word about this awesome service — https://specialplaydate.com

Anatomy of a schedule change

For the past three days, I’ve been trying to prepare Ruby for her new daycare schedule, which requires her to get up at about 6:15. She’s used to sleeping in, so it hasn’t been easy. But we’ve made slow and steady progress each day…

Day 1 -- First I opened the bedroom door and turned on the hall light. No movement. Then I cranked up some music, blow dried my hair outside her bedroom door and turned on her light. Still no movement.

Day 2 -- Opened her bedroom door and turned on the light right away. She moved a little and proceeded to curl up into a ball similar to day 1. At least she moved, right?

Day 3 - Opened the bedroom door and she was already slightly awake. Turned on the hall light and she opened her eyes a little. Said, "Hi mama," and asked for Elmo music. I think we're making progress!

How ABA changed our lives

One of Ruby's favorite reinforcers was her pool. September 2009

When Ruby was three years old, she started injuring herself — as in, bashing her head against the wall and the floor, pulling her hair out until she was bald and smacking herself in the face. These self-injurious behaviors were triggered by loud noises, particularly babies crying and kids screaming, sending her neurological system into overdrive. Her only relief seemed to be inflicting pain upon herself.

Ruby was asked to leave two daycare centers over the course of about three months. Her daycare providers simply didn’t know how to handle these self-injurious behaviors or prevent them from occurring. And neither did I.

This was a sad, scary and frustrating time for both of us. I so desperately wanted to help Ruby stop hurting herself, yet I had absolutely no idea what to do.  I knew that this wasn’t something I could handle on my own, yet I had no real idea of who could help me.

As I frantically searched for a solution, I read some interesting articles about applied behavioral therapy (ABA) helping children with autism overcome sensory integration challenges and self-injurious behavior. Ruby didn’t have an autism diagnosis, but I held out hope that these same principles might work for her. I was desperate and I would have tried anything at that point.

A few frantic emails to an ABA program in our metro area, and Ruby was immediately enrolled in their program. I hired a PCA to stay home with her so that she could spend up 7 hours a day working on these new therapies.

At first I was skeptical about the ABA program, mostly because I didn’t understand it very well. In the first few weeks of the program, Ruby learned basic hand gestures, like “come here” and “stop.” She received positive reinforcement for her efforts through rewards like a few minutes of an Elmo movie or two minutes of playing with a favorite toy.

I had a hard time understanding how this would help Ruby stop hurting herself. The psychologist explained to me that Ruby’s inability to communicate with others was a major source of frustration for her and the only way she currently could communicate was by injuring herself. The program was designed to walk Ruby through the natural steps of speech development, getting her to a point where she could effectively communicate. And when she could communicate, she would (hopefully) stop hurting herself.

The theory made total sense, but being immersed in the program and seeing only incremental changes was maddening at times. Ruby continued to injure herself, sometimes even worse than before she started the program, especially when she started talking and learned how to request things, sometimes things that she couldn’t have. The word, “no,” sent Ruby spiraling out of control and her self-injurious behavior exploded. So, the psychologist taught me how to take the word, “no,” out of my vocabulary and instead offer her choices or re-direct Ruby to something she could have. I also learned to explain loud noises to Ruby, like, “the baby is crying because she is hungry,” or “the doorbell just went off and the dog barked because we have a visitor at the door.” She understood me – and she calmed down instantly. The results of these simple changes blew me away.

Ruby spent two years in the program, working about 20-30 hours each week while going to half-day school. It was exhausting, not just for her, but for me, too. We had staff in our house constantly, so privacy was all but lost. I’m sure our neighbors wondered what the heck was going on at our house because we had 3-4 cars lined up in the street starting at 7:00 a.m. every morning.

But all of the hard work and inconvenience was worth it, because Ruby’s self-injurious behavior did decrease as she gained an amazing array of communication skills that still astound me. In two years, she went from merely babbling to speaking complete sentences and understanding mostly everything I say to her. In fact, she improved so quickly and her self injurious behaviors ended so abruptly, that she graduated out of the program last August. She hasn’t seriously self-injured since. Life has changed dramatically for us.

With Ruby starting her new daycare next week, it’s hard not to worry that she may fall back into this old pattern of self-injurious behavior again.

However, this time around, we’re both more prepared. And if problems arise, we can talk about them.

How amazing is that?

Change is the essence of life — but it’s not always easy

“Change is the essence of life. Be willing to surrender what you are for what you could become.” ~ Author Unknown

Change. It’s a fact of life, something that we must accept in order to grow. But if you’re a parent of a child with special needs, you know how hard it is for your child to accept change. It can be the simplest alteration in routine — a quick stop at the grocery store after school — that spins your child out of control.

This week, I found out that there is a big change coming in Ruby’s life. Our PCA of over two and a half years has found a new job working with autistic children. While I am so happy for her and her exciting change, I know this change is going to be anything but exciting for Ruby.

Fortunately, I had the foresight this winter to start planning for Ruby to go to a daycare in first grade next year, as I knew it would be impossible or unlikely that a PCA would be able to work just a couple of hours before and after school each day. I found the perfect setting for her, but I didn’t feel she’d be ready to start until this summer. However, this week’s news means that I don’t really have a choice anymore — she has to start in two weeks. Thankfully, after a frantic call to daycare, she has a spot available for Ruby to start immediately.

I’m so grateful that I don’t have to fret over finding a daycare in two weeks; however, I know that the hardest part of this change has yet to come. This is going to cause a major disruption in Ruby’s life and with it may come some behavioral issues we haven’t dealt with in quite some time. I’ve set up some visits to daycare this week and next and I’ve already spoken at length with her about the new daycare to hopefully ease the transition, but I’m still worried that it’s going to be really hard on her.

I feel so helpless right now. Helpless because Ruby won’t understand why this change is occurring. Helpless because I wish I could quit working full-time to stay home with her and helpless because I don’t have more time to transition her into her new daycare.

But, despite all of the helplessness I’m feeling right now, I know that this change was brought into our lives for a reason: to help us grow. And without growth, Ruby wouldn’t be where she is today.

Bullying and children with special needs

For the past couple of weeks, I’ve been thinking a lot about bullying of children with special needs. It started out with an email from AbilityPath, an online hub for the special needs community. The email included a link to this amazing PSA on from Glee Actress Lauren Potter and a report on bullying of children with special needs, called Walk a Mile in Their Shoes. I couldn’t hold back the tears as I read the gut wrenching stories and statistics on bullying of our most vulnerable children. Just the thought of Ruby being bullied breaks my heart.

Here are some frightening statistics from the AbilityPath report:

Sixty percent of students with disabilities reported being bullied compared to 25 percent of the general student population. Source: British Journal of Learning Support (2008)

Only 10 studies have been conducted in the United States on bullying and developmental disabilities. All studies found that children with disabilities were two to three times more likely to be victims of bullying than their nondisabled peers. Source: Disabilities: Insights from across Fields and around the World (2009)

While these statistics are truly heartbreaking, the report offers tips for parents to help them recognize the signs of bullying and provides ways to handle it with their child and the school. It’s a great resource for parents (of children with all abilities), teachers, therapists and anyone else who might have contact with children with special needs. I hope you’ll check it out and support AbilityPath’s amazing work!

Spread the word: The r-word hurts!

Before Ruby was born, I never even thought twice about using the word “retard” or “retarded” to describe people and things that I thought were stupid. I wasn’t using it to make fun of people with special needs, but I also didn’t consider how my use of the word might hurt those around me. When I was thrust into the world of special needs parenting, it became crystal clear to me exactly how much damage I’d been doing by using the r-word. I felt ashamed.

I am fortunate that I haven’t yet felt the pain that comes from someone calling Ruby the r-word. But I can’t even tell you how many of my friends and colleagues say the r-word without hesitation around me. I’ve also been subjected to many “short bus” jokes that are anything but funny. Despite the pain that I feel when these comments are made, I truly believe that they’re not saying it to hurt me or anyone else with special needs. I don’t think they realize that the word they’re using as slang degrades my daughter and thousands of other people with developmental and intellectual disabilities.

Today, on Spread the Word to End the Word day, I made a pledge not to use the r-word. I hope you will pledge not to use the r-word, too. And make sure to check out the links below to some really amazing blog posts on this topic. Visit www.r-word.org for more information on Spread the Word to End the Word.

Uncommon Sense: The word “retarded” is not cool

Love that Max: If you ask people not to not use the word “retard”

Attack of the Redneck Mommy: Hear My Battle Cry

J.C. Wert: The retard in the next booth

Huffington Post: Bullying Revisted: Retarded?