Who's Really Wearing the Cranky Pants?

Although it rarely happens now, not too long ago the only reports that came home from school about Ashley were ‘bad news’ reports. Most of the time, they spoke of her negative behaviors. She was described as being in a bad mood all day – being uncooperative, and one of my all time favorites, non-compliant. (I wrote a long time ago about that compliance thing…).

But the child I would see at home was completely different. She was pleasant, smiled and laughed a lot, played with her siblings, and was just a joy to be around.

So why were things so very different between school and home?

What I figured out a long time ago about Ashley was that her feelings and actions took their cue from the feelings and actions of people, especially adults, around her. I’m sure this is true about most children with significant special needs, but I feel it is even more honed in Ashley because of her dual sensory impairment (deafblindness).

Ashley can read my moods and feelings extremely well. She was able to when she was very young, and she continues today with that skill. She’s not using visual cues to pick up on my moods and feelings – she can’t see me smile or frown or cry. She can’t hear a change in the tone of my voice – angry versus sad versus happy. But somehow she knows.

She knows when there is ‘drama’ in the house. She knows when I am feeling rushed or impatient, and when I am relaxed and happy, she is relaxed and happy. When she senses that I am sad or down in the dumps, she will snuggle or put her face just inches from mine and smile her biggest smile.

Somehow she knows.

So, could those school reports of negative behaviors and bad moods be more a description of the adults in her environment at school than a true reflection of what she was feeling?

Maybe, just maybe, Ashley is not the one who needed the functional behavior assessment and behavior intervention plan!

How Not To Run A Group Home

This past Saturday, I made a trip to Jessica's group home to take her some new school clothes and school supplies. What I found when I arrived was more than appalling. I thought the best way to share my observations would be to let you read the letter I have written to group home managment and copied to our state's licensing organization. When I get responses, I will share those also.

(The picture is not of Jessica's bathroom, but the problem was very similar)

August 31, 2009


Ms. Group Home Manager
Group Home Company


Dear Ms. Group Home Manager:

As I mentioned to you on the phone this morning, I visited your children’s group home on Saturday, August 29, 2009, and was quite disturbed about the condition in which I found my daughter’s bedroom and bathroom. In addition, I noted several other things in the general living area of the home that I believe need to be addressed. I have listed my concerns below:

• When I arrived at approximately 10:00 am, my daughter, Jessica, was sitting on her bed clothed in shorts and a tee-shirt. I noticed that there was vomit in her bed, and that she smelled both of vomit and general body odor. I asked her if she had vomited in her bed, and she said she had, when she had been sleeping. I also asked her if she had taken a shower either the previous night or that morning, and she said she had not. I asked her to remove the sheets from her bed, and I went to inform one of the two staff members present that Jessica had vomited in her bed. At that point, the staff member who had been cooking breakfast came to Jessica’s room and took the soiled sheets away. The other staff member remained sitting on the couch in the living room.


• When the bedding was removed from Jessica’s bed, I noticed that the plastic mattress cover was in shreds, obviously providing no protection for the mattress. Since Jessica is often incontinent, I believe more attention should be paid to having the appropriate plastic cover on her mattress. Due to the type of plastic covering on the mattress, Jessica was unable to remove it. The staff member did not remove it when she took the bedding away.


• Jessica’s room is carpeted but there is also a small area rug on top of the carpet. That area rug was not lying flat on the floor, and Jessica tripped over it twice while I was there. Also, the mat in her bathtub and the mat on her bathroom floor were similarly bunched up, and appeared to be a danger to Jessica considering she does drag her left foot.


• Also in her bathroom, I noticed that the bathtub hand rail used to assist Jessica in getting into and out of the bathtub, was covered in mold. Sitting on that rail, and touching the mold, was Jessica’s toothbrush.


• I began to clean out and sort the clothes in Jessica’s closet. While doing so, I noticed many gift bags such as one would receive at holiday celebrations (Valentine’s Day, Easter, Christmas) filled with candy. Obviously the candy had been there for quite a long time. I also found similar bags of candy on her dresser. I am concerned that the presence of candy for such a long time would draw either insects or rodents.


• Jessica’s entire room, in my opinion, had not been thoroughly cleaned in a very long time. Inside the lamp in her room, was a thick layer of dead bugs and dust. The tops of her dresser and other furniture in her room was covered in dust and sticky substances, her carpet was very stained and appeared to not have been vacuumed in a long time, and her windowsills were thick with dust and dirt.


• On that morning, the temperature was approximately 85 degrees at 11am. The air conditioner in the home was not on. Rather, Jessica’s windows were open as were several other windows in the house.


• Sitting in Jessica’s open windowsills were a can of Lysol and a can of Pledge.


• As I was leaving the group home, I also noticed that the medication closet was unlocked.

As you and I discussed, it would be ideal if Jessica was able to completely care for her room, clothes and bedding. I fully support and expect that she will play a role in those tasks, and believe they are part of her plan of care. However, given her level of intellectual disability, the fact that she only has use of one hand, and her emotional instability at times, I believe it is unrealistic to think that Jessica is capable of maintaining those things alone. Also, given the fact that the group home company decided to move the children’s group home from the West End of my city, a location that was just 5 minutes away from where I live, to the far East End, a 40 minute drive away from my home, and understanding that I also have another child that is medically fragile, it is not realistic to expect me to be at the group home often enough to maintain a level of cleanliness in Jessica’s room and bathroom. In fact, given the amount of money that the group home company receives for Jessica’s care both from Medicaid and from me, I would expect a higher level of attention to cleanliness and care for Jessica.

I am more than happy to discuss this further with you. I believe at a minimum a professional cleaning staff should be contracted to thoroughly clean Jessica’s bedroom and bathroom, including carpet cleaning and window cleaning. I also believe Jessica’s rooms should be painted, and then a plan put in place to ensure that an acceptable level of cleanliness is maintained.

Please feel free to contact me at the address/phone number listed below.



Jessica's Mom
My Address
xxx-xxx-xxx(home)
xxx-xxx-xxx(office)

cc: Department of Behavioral Health and Disability Services,
Office of Licensing
Attention: Person in Charge

Read My Hands

At the start of the second week of school this school year, I filed a complaint with my state department of education alleging that my school district was not providing the sign language support listed in Ashley’s IEP. Letters flew back and forth between the school district, me and the state department, and the result? The school district was found to be in noncompliance. In other words, they agreed with me.

So, the state department of education directed all parties to have a meeting, play nicely, and talk about compensatory services for the times that appropriate services were not delivered. The school district interpreted that to mean compensatory services only up until the complaint was originally filed – which to them meant 4 hours.

Of course, since that time, the school district has failed to provide the services for at least three hours each week, and just two weeks ago, they missed a week and a half total.

The school district contends that they have provided the services because the classroom assistant, who is a fluent signer, has been assigned to assist Ashley. My concerns arise when that person is not available (those times I listed above). The school district says they continue to provide the support even then. Obviously we disagree.

So where does this leave Ashley and her IEP? Well, Ashley’s teacher says she can communicate sufficiently with Ashley through verbal means. Ashley is profoundly deaf in her right ear and has a severe loss in her left. I believe the teacher is mistaken.

The substitute aides the school system says they provide (which I’m not sure is always the case), know little or no sign language – maybe signs like yes, no, help, hurt, if that, but definitely not enough to ensure Ashley receives appropriate academic instruction.

So here we are almost half way through the school year, and Ashley has not received the services listed in her IEP the entire time. My next plan of action includes asking for the sign language qualifications of the teacher and the substitute aides and filing another complaint with the state department of education. That will probably waste most of the rest of this school year. Ultimately, I believe we are headed for due process again.

It really, really does not have to be this difficult.

Filling In The Form

Wow! It's the first day of the new school year, and I couldn't be happier. Everything seems to be going right. The bus showed up ON TIME this morning, and the aide on the bus actually started signing to Ashley as she approached the bus. Ashley was thrilled. There were lots of other children on the bus, and Ashley sat next to a young man in her class.

I got a text message from the teacher a little later saying that the bus arrived to school on time, and that Ashley's new aide - yes, late last Friday, an aide with proficient sign language skills was hired to be Ashley's one-on-one aide - had really clicked with Ashley.

The teacher then went on to tell me that the school district had finally been able to hire two new vision teachers, and Ashley would begin receiving services immediately. The teacher wants to schedule an IEP meeting so we can finally get Braille instruction written into the IEP.

Yes, it's looking like it could be a really good school year….IF ALL THE ABOVE WEREN'T A COMPLETE SET OF LIES!!!!

The bus, as I expected, was 30 minutes late, meaning Ashley was late arriving at school. No aide has been hired although Ashley's IEP calls for 6.75 hours of instructional assistant support from someone who is "sufficiently proficient in sign and speech so as to provide a language role model." The classroom aide is "filling in" as the assistant principal told me two weeks ago, filling in when she's not helping other children or doing other administrative work that classroom aides are required to do. When the classroom aide is not filling in, NO ONE else in the school knows sign language. Sign language is Ashley's only means of communication. That fact makes me feel all warm and fuzzy - kind of like I just ate a quart of wooly catepillars. The email I sent to the Director of Special Ed has gone unanswered, and no one has mentioned the support of a vision teacher.

So, it's actually looking like every other school year - rotten and full of battles. Today I printed out the complaint form from our state department of education, and I will be submitting at least one of those by the end of the week.

Yea, I'm really, really happy…

Hug or Takedown?

Recently, I’ve witnessed children being put into restraint holds by the adults whose task it is to teach/assist/supervise them. The first time I saw any child in a restraint, I found it incredibly disturbing. The principal of my daughter’s elementary school was lying on his back on the floor in the school’s common area. On top of the principal, also on his back, was a child who appeared to be maybe 7 or 8 years old. The principal had his legs wrapped around the child’s legs in such a fashion that the child could not move his legs at all. The principal also had his arms pulling the child’s arms back and held them immobile just as he did the child’s legs. I don’t know what precipitated the principal feeling he needed to restrain the child in such a way, and I don’t know why they were in the school’s common area. But, just as I walked upon the scene, the school’s bell rang, and students poured out of their classrooms.

The majority of the students moving through the hallway and common area were exhibiting one of two behaviors. One set of the children released by the bell just stopped and stared. Not a one of them said anything, but I do believe their eyes held worry, apprehension, and even fear. The second set of children moved around the principal and child in the restraint almost as if they weren’t there. This second set didn’t act surprised and didn’t seem bothered at all. The reactions of the second set of children were the ones that upset me the most.

Joel at NTs are Weird wrote a blog the other day about restraints, and I really liked his explanations. The comments that folks left for that blog entry are also very good. As I read what he wrote, I thought about my youngest daughter’s classroom. I know that restraints have been used, but I know also that they are very infrequently used. I attribute that to my daughter’s instructional assistant.

Besides providing superior support to my daughter, this aide has come to know each child in the classroom better than any other adult. She can spot when one child is heading for a meltdown. She understands the environmental triggers for each child, and she moves to make changes before things get out of control. And, as a result of that forward thinking approach, the children who previously would be put into a restraint hold, almost never go there now. Like one of the commentor’s on Joel’s blog, this aide knows when a child needs deep pressure for calming versus a restraint which could actually make the situation worse. She has even gotten one of the children to ask for a ‘squeeeeeze’ when she feels the need for one.

And because of the wonderful work this particular aide does, the other children in the school don’t have to witness things similar to what the elementary school children I wrote about above witnessed. The children in this school witness respect, dignity, and support not unnecessary restraints.

A Stepford Life

It seems like some people expect children with disabilities to be better behaved, have fewer outbursts, or be better disciplined than the average child. I’ve written on this subject previously in a blog entry on compliance. In that entry, I focused on the classroom and how children with disabilities were held, in my opinion, to higher standards than their non-disabled peers. But I’m seeing it more and more in other settings also.

On my daughter’s school bus – a bus which transports only children with disabilities – the children are expected to stay in their seats and face forward. Many of the children are harnessed in so they can’t move, but for the ones that aren’t, the bus driver and aide frequently yell at the children to sit down and face forward. Have you ever seen the school bus for children without disabilities? Kids are moving all around, leaning across the aisles, yelling to their friends, playing on their computers, and throwing paper balls. The bus driver on that bus just turns her radio up louder.

In the grocery store, I’ve seen shoppers glance in the direction of a toddler who is whining or throwing a fit over something he can’t have. But, let a toddler with Downs Syndrome do that, and the glances become a little more intense – a look that says, “Why didn’t you just leave THAT child at home?”

In the group home in which my oldest daughter lives, the staff often complains about how grumpy their charges are, how they don’t smile or laugh much. Well, if I was told when to eat, what to eat, when to shower and dress, and when to go to bed, I’m not sure I would be happy and bubbly all the time either.

Just because our children have disabilities, it does not mean they don’t have feelings and emotions. I have bad days when I just want to be left alone. My kids have bad days when they just want to be left alone. People with disabilities should not be held to any higher standard than people without disabilities. However, given what a lot of people with disabilities have to deal with on a day to day basis, I’m surprised they are not more rebellious than they are. I bet I would be.

I’m not a Stepford parent and I don’t want any of my children, with or without disabilities, to be Stepford children.

Compliance

Compliance – no, not the legal kind – the kind that is expected of our children with disabilities. I feel that the level of compliance expected in our school systems for our children with disabilities goes well beyond what is expected of non-disabled students.

One of my children is in gifted educational programs. He is rewarded for, and actually expected to demonstrate critical thinking, creativity, and questioning that which is considered the norm. If he doesn’t fully investigate a subject, view it with a critical eye, and then develop a conclusion based on creative thinking his grades reflect that. However, if he questions traditional thought and is innovative with his conclusions, he is rewarded with a good grade. On the other hand, my child with a significant disability is not allowed to explore her classroom assignments in the same way.

My child with the most significant disabilities is expected to be compliant. Learning the rules of general society and practicing those rules at all times earns that child the best grade. If she turns the puzzle upside down because it helps her to solve it faster, she is corrected and told that the puzzle must be oriented correctly. If she questions the value of putting pegs in holes by pushing the task aside and trying to get out of her seat, she is being ‘difficult’. The daily notes that come home more often than not say she had a bad day because she wouldn’t ‘cooperate’ and follow instructions. If she complains by sitting down when she doesn’t understand the value of walking around the track four times while holding an adult’s hand, she is not ‘participating with her peers’. If she would prefer to look at the large snow globe on the library shelves and try to figure out what makes the ‘snow’ float, she is ‘not using her time wisely’. Just the other day, my daughter’s teacher complained because my child was running in the halls of the school. I understand running is not a good thing, but this was an event that should have been celebrated. Doctors always told me that my daughter would not walk. They were wrong of course, because she did finally start walking when she was five years old. So the fact that she actually RAN was a very significant event!

I am not saying that children with disabilities should not be expected to follow rules, especially in the classroom. Rules which involve the safety of my child, other children and the teaching staff must be followed. My child’s creative thinking processes and actions should not offend or in anyway bother the learning process for other children. In fact, I expect all my children to use their manners and be polite and respectful of others. But, should my youngest child take great pleasure in devising a colorful pattern of legos stuck in the honeycomb structure of the child safety gate at our patio door, I refuse to tell her that legos aren’t supposed to go into the gate. I will continue to encourage all my children to be creative, responsible people who don’t let traditional constraints stifle them.

The conundrum for me is why special education teachers and administrative staff seem to have low expectations for the academic achievements of our children with significant disabilities but have very high expectations for compliance in those same children.