It is Down syndrome awareness month. Many of us have been posting  educational and awareness information about the abilities of people with Down syndrome and the possAbilities for them. We want you to come along on the journey and embrace and celebrate life. I also want you to join us in making a difference.  Albert Einstein said, “The world is a dangerous place to live; not because of the people who are evil, but because of the people who don’t do anything about it.” A few days ago my friend Joe Meares posted a post that basically said educating, awareness and feel good stories are great and needed, but there is still a lot of work to be done.  Today, I am going to shift a bit because I want to educate you in a different way about some work that needs to be done. I want to talk “Seclusion and Restraint,” and no this is not “Fifty Shades of Grey.”

Last week, I had the opportunity to testify at the Kansas Board of Education regarding the KS guidelines for the use of Seclusion and Restraint in our schools.  Just this year many have been horrified by the events surrounding the death of Ethan Saylor, but there have also been serious injuries and deaths in schools around the country.  For many parents, this is a constant fear. Children with developmental disabilities often have some type of communication issues so they cannot come home and adequately tell what happened at school. One of my friends has a son who uses ASL (American Sign Language) as his primary mode of communication. If his arms are restrained, he cannot tell you that you are hurting him.  Though accurate statistics are nearly impossible to find, most professionals agree that a large percentage of individuals with disabilities will be abused at some point in their life.  I also know parents who don’t think it will happen to their child. I will admit that I am a parent who is pretty involved at the school and a self-proclaimed high maintenance mom so it is not something I have spent a ton of time worrying about. However, a few years ago Rachel was inappropriately restrained in the school setting by a related services professional with many years of experience.  This “professional” had been “trained” in the school district and state’s guidelines for the use of Seclusion and Restraint.  This is the abbreviated version.

Rachel doesn’t have a behavior plan as part of her IEP because it is not needed.  Like any child she will test the boundaries and misbehave sometimes, but she is usually re-directed without a lot of fuss.  She has never been violent. A few years back (4th grade) there was a particular related services professional who just butted heads with Rachel from day one. She and I didn’t get off to a very good start either when one of her first sentences to me was that “Down’s kids are always…”  I don’t know remember the rest of her sentence because I checked out.  Professional educators and therapists do not get a pass from me on people first language.  Even when I modeled people first language, she didn’t catch on.

Apparently on one occasion she wanted Rachel to put the pencil in a certain place so Rachel would put it somewhere else.  They had a complete and total power struggle over this and this was apparently a common happening.  Rachel’s former therapist was really fun and figured out ways to use Rachel’s interests to work on her goals. We almost always heard from teachers and therapists that the loved working with Rachel. Not so with this lady. We all meet someone like that along the way so we trudged along.

One day I had an email from said professional that said they didn’t get any work done because Rachel kept calling her boyfriend on her pretend phone. His name was Troy and she said she was going to marry him. “I have no idea who Troy is but this was not helpful.”  Forgive me but I fell into laughter. Anyone who knew a 10-year-old girl with Down syndrome would surely know that this was Troy Bolton of “High School Musical.”  While I am not giving Rachel a pass for being disobedient, I will say that I have serious concerns about a therapist who couldn’t turn this into a positive. I once told her that Rachel knew how to punch her buttons and she replied, “I don’t even know what that means.”  I also thought that Rachel is a pretty smart little girl to figure out how to manipulate this woman into getting no work done. I told the therapist and case manager that the two of them would have to work out their differences, and we trudged along.

Then about 18 months into this relationship I learned that this person had used CPI (Crisis Prevention Intervention) restraint on Rachel.  The story, confirmed by the therapist, was that Rachel wanted a drink and was told she couldn’t have one.  She went anyhow.  The professional went after her and Rachel was waving her arms and the professionals wrapped her up in restraint. This was accidentally witnessed by another person.  Rachel apparently started back to her room and was “flailing” her arms and was restrained to the ground by said professional.  Rachel did not tell me this. I found out two days later and how I found out is not important except to know that the professional didn’t tell me or anyone else. When I did get the information, I questioned Rachel who took a deep breath and said, “Mommy I know big girls don’t get a drink when they are not supposed to and I won’t do it again.”

None of this made sense to me but I went to the principal and learned that she knew nothing about the incident either. Later that day we met with said professional and her version of the story matched what I had been told. I was really confused then because who on earth would use physical restraint on Rachel because she got a drink of water and flailed her arms?  My questions started something like this: 

Did you think Rachel was in danger? “No.” Were you in danger? “No.” Was another child or another school employee in danger? “No.” These are some of the criteria for the use of restraint.  Then I asked if she used CPI restraint, her response was yes and she was trained/certified in it.  Did you have a witness? “No.” Did you report this to the principal? “No.”  You made no efforts to report this to me.  “No because we like to give kids a second chance and I wanted to give Rachel another chance.”  My response was that I had been contacted for lesser things and that she obviously needed to be trained again because if she were adequately trained she would know that she was required by the District and State to report this to the parents and the principal.  It was evident by the principal’s reaction that she knew nothing about the incident before I told her. And oh by the way, did I mention Rachel doesn’t even have a behavior plan.  Can you say violate my child’s rights? Can you say “assault” my child because that is ultimately what the therapist did.

I informed her that I was very angry and wanted to talk with the principal in private.  She said she guessed she used poor judgment and left.  I told the principal that even though it would put them out of compliance with Rachel’s IEP, I did not want Rachel to see the therapist again and we would figure out what to do.  That story is for another day but Rachel did not see that therapist again. 

I was amazingly calm throughout this ordeal. My friends, especially the special education ones, were livid and astonished by my calm demeanor. The main reason I was calm was because I know the law, and I know my rights and Rachel’s rights. The only reason we were able to negotiate and navigate this was because of our knowledge of the law.

I tell this story today because if I could happen to Rachel who has pretty good communication skills, an involved and high maintenance mom, in a good school district where they provide training, do you think it is happening to other kids?  You be the judge. And then will you be one of the good ones who do nothing about it or something about it?

NOTE:  The meat of today’s blog is a reprint of my posterous blog, “Could This Happen to You?” It did not migrate over and I think it is worth taking another look. Photographs are just a few from her 4th grade year.