Saturday, May 19, 2012

What Autism Looks Like: Nonsense Words and Echolalia

This is an example of speaking in nonsense words.  Usually he does this at the end of a sentence.  He kind of trails off and starts speaking in gibberish like this.  But sometimes he does the nonsense speak with songs, rather than using the correct words, even though he knows the words to the song. This is the only video example I could find, so I'll have to try and catch him in the act, or look through older videos we have on DVD. 

The good news is that he rarely speaks in nonsense words in conversation any more.  He was doing it a lot when he had really bad yeast and bacteria overgrowth issues in his gut.  I think I have his tummy in pretty good shape right now.  I don't think the yeast is gone, but definitely more controlled. 

The "brownies" he's eating are the protein chocolate chip muffins from a previous post.

Here is another fun video because Hayden's so cute. I believe he is 2 1/2 in this video. This was before I really understood that there was a problem with him (Autism), and was just glad to hear speech from him at all.  But the speech on this video is an example of echolalia.  Echolalia is when a child only speaks by repeating whatever words he hears.  This was how Hayden communicated for at least a year.  He never initiated words, but simply repeated whatever words were spoken to him.  The very last words he speaks on the video are another example of nonsense words/  speaking in gibberish.

Why am I posting these videos?
Several reasons.

I hope that they will help educate people about what Autism is and isn't.
I hope they will help parents realize that their child may need to be diagnosed for Autism.
I hope they will help parents already dealing with Autism learn ways to cope with its symptoms.
I hope that some day Hayden will be recovered from Autism, and these videos will be evidence of how he once acted, and that Autism is treatable.

Monday, May 14, 2012

Mothering a Special Needs Child

Here are two inspiring writings about mothering special needs children.

The Special Mother  by Erma Bombeck  (Obviously this is an older writing, as people no longer use the term "handicapped", and since 1 in 88 children in the US has Autism, I'm pretty sure the number of special needs mothers numbers more than 100,000.)  This one was given to me by a friend for Mother's Day, with "Damron, Sheila. son."  added at the bottom.  

Welcome to Holland by Emily Perl Kingsley  

I also love the story and picture at the top of this blog

Saturday, May 5, 2012

Hayden: Left on the Bus

Autism has been in the news lately because a father recorded his son being mistreated by his special needs aides at school and posted it to YouTube. 

Then, the National Autism Association on Twitter Friday asked for stories about kids with Autism being mistreated on the bus, and posted this video, which made me cry.  [Is this child a dog?  I wouldn't even treat a dog like that. Just because she can't speak, you can plop that stuff on her head, then shove her around, then make fun of her for crying?  How dare you?  Why do you work with children at all if you hate them?  You should be shoveling manure somewhere, not working with people.  And yes, that child is a person, in case you didn't get the memo.]

And so I was reminded of Hayden's incident, and that his story was never really told. Though not as horrible as the stories above... (though maybe it was? I have no way of knowing what really happened that day.)  It was horrible to me when it happened.  My child could have frozen to death. Someone could have come along and kidnapped him. He could have clawed his face, or had a panic attack, or been deathly afraid for an hour, all alone in the cold, thinking that everyone decided to leave him by himself on the bus forever, and he'd never see us again. He was only 3 years old.   

I feel like enough time has passed that I can tell this story without harming the individuals involved. Sorry to anyone who feels offended, but I'm trying to present this in a pretty matter-of-fact manner. I've left names out, because I don't think we need to go pointing fingers. I've made my peace with the people involved, and harbor no hatred. But we have to talk about the bad choices people make in life so they don't happen again.  Too many special needs kids are treated like they're not even human... Special needs kids are being left on the bus over and over... when are we going to fix this?  And I often wonder when I think about this incident: Would this have happened to Hayden if he was typical? If he had been able to talk?  If the people involved had seen him as "normal" and not as a "kid on the short bus"?  Did they think of him as cargo to be picked up and dropped off, since he couldn't speak?  I will never know.  But the story needs to be told.

And so, here it is.  The tale of... 
Hayden: Left on the Bus

Hayden was left on his school bus in February 2010.  He was at the bus lot for an hour and a half, alone and cold.  Fortunately he was ok.  We were told that he slept through the incident. At the time I believed them, but now I'm not sure if that was just what they told us so that we would not be as angry.  

Why was Hayden riding a school bus?

At age 3 Hayden started going to a developmental preschool for 2 1/2 hours a day.  There were only 6 kids in the class, and most of them non-verbal, so I chose a daycare in town with lots of kids for him to play with the rest of the day, so that he could hear other kids talk and have a better opportunity to learn language. (At this time Hayden was fairly non-verbal, speaking only 1 or 2 words at a time.)

Every morning a small school bus picked Hayden up from daycare and took him to the elementary where the preschool program was. There he learned school skills, calming and small motor skills, and some speech and occupational therapy. Around 12 the bus would pick him up and return him to daycare. He had lunch and a nap, got up and played for a while, then I would pick him up after work.

On this particular Thursday in February, the bus driver and aide picked Hayden up from developmental preschool, dropped off the ONE other child on their tiny bus that day, then drove to the bus lot and left Hayden on the bus by himself.  It was about 30 degrees outside that day.   

At this time (in 2010), if Hayden was upset or restrained, he would start clawing at his head and face with his hands and hurting himself. My first thought when I was called was, "Oh my God, what did he do to himself? Did he scratch his face bloody?" But when I got to him he seemed to be un-phased.  Since he couldn't speak, I asked him if he was scared, and he said no. That's the only information I could get from him about what happened. Fortunately the temperature wasn't below freezing, the daycare counted heads and noticed he was missing within an hour, he had his hat and coat on, and had his blankie to comfort him.  So I guess his guardian angels were looking out for him that day.

As the bus driver and aide pulled into the bus lot, the aide was sitting in the seat across the aisle from Hayden.  The driver parked, hooked up the bus, and said goodbye to the aide, who was sweeping the aisles of the bus.   Hayden was strapped into a harness, so he was sitting upright, and was in the 2nd seat. Even if he had fallen asleep, he still would have been visible to anyone who had looked. And can you imagine, if he wasn't asleep?  Can you imagine being strapped in a shoulder harness, all alone, unable to even move, for 90 minutes in the cold?  That would scare me, let alone a tiny boy who can't speak.

The school bus aide was apparently 89 years old. The bus driver said the aide had been mixing up the kids on the bus prior to our incident, not knowing which kid was which (8 kids max). She would start unbuckling the wrong kid to get off at stops and the driver had to correct her. The bus driver said she had complained before about the mental state of the aide to the Director of Transportation. Of course the driver was trying to place the blame on another.  However, in my humble opinion, an 89 year-old has no business being on a special needs bus in the first place; an elderly person is not able to physically handle special needs kids. They are often physically aggressive, and need to be picked up off of wheelchairs and put into the restraints. An 89 year old should not be doing this kind of work. Sometimes Hayden hurts me when I have to restrain him if he's having a meltdown. I would not wish that on someone who was not young and able to physically handle it.

The school corporation's answer was that it would be age discrimination to fire her because she was old. But my answer in retrospect is, don't fire her, just find her a different job.  If she would still like to work for the corporation, maybe another job like answering phones would work better for her.  But safeguarding disabled preschoolers is not a good match, and in fact is dangerous for her and for the children. My guess is that she was unaware of her inability to care for the kids, and just thought she was helping. That's why it was the supervisor's responsibility to make sure that the people we pay to keep our children safe are doing just that. 

The driver should have been twice as vigilant, since she knew the aide's mental state was questionable.  The thing that I told people after the incident was, "you know, every day before I leave work, I walk through my computer lab to check that every computer is turned off.  Sometimes I do it twice, because I'm not sure if I've already done it, and I don't want to make a mistake. And those are just computers, not human beings. Not little lives put under my charge to keep safe, but I double check each day. And this person can't manage to walk to the end of the short bus and back??"  

The superintendent, assistant super, bus driver and aide had a meeting the following day.  The driver asked if we could be present at this meeting so she could apologize to us.  She was told that she was not to have contact with us in any way.  We were not invited to the meeting.  

I went to the police station in town on Saturday to get information. They had the cool one-way glass thing that looked like a mirror but had people on the other side.  Except it was a small town police station, and I could hear them on the other side.  Over the walkie, an officer would say, "Ask her what time it was when..."  Um, I can hear you through the glass!  : )  Hayden enjoyed saying hi to the "pleese man" and giving him five, eating his fruit snacks and driving his hotwheels on their nice glass-top table, and crawling under the table and saying, "boo, it's Hayden, Mommy!" while we were trying to talk. The school had told me that a state police officer had already investigated the case and issued a citation. I was told by a source that this particular person always handles school cases so they can be swept under the rug. I was told by the town police that if I wanted any information from the police, I would have to contact the school.  He said the state police and the town police had no record of the report being filed.

I received an apology letter from the bus driver, and a friend told me she was a mess and gave me her number.  I called her to say that I was still angry and hurt, but that I had forgiven her. I didn't want her to harm herself. If Hayden had been killed, I may not have been able to forgive her yet, if ever. But luckily for all of us the story turned out differently, and so I told her that I forgave her and hoped she was ok.   

The school had to contact CPS by law, who had to come interview us in our home. Hayden reacted as he did at the time to all strangers, by screaming and running upstairs. We explained that he was Autistic and she seemed used to his reaction and didn't force him to come talk to her.

The CPS worker was the first person I talked to who had actually done any kind of investigating into what happened, and who actually seemed at all concerned about the situation, other than to cover their own butt.  She verified that the two women were fired, and she said she would coordinate a large meeting if my arranged meeting with school officials didn't go as we wanted. She answered all our questions, and was supportive of our position. She put notes on the driver and aide's permanent records that they were involved in a case of child endangerment so they would not be allowed to work with children again.     

We got no information from the school after the incident happened, aside from a quick call from the special needs coordinator to say that the driver is a really nice person, and that the incident would never happen in future.  So I asked for a meeting with the Superintendent.  The Director of Transportation invited himself to the meeting.  The meeting went as expected.  I voiced my concerns politely about alarms, and policies, and staff training, they minimized and made excuses and changed the subject.  They were very concerned that the story would get out to the news, and instructed us several times not to talk to anyone about it.  It crossed my mind to call the news myself, but that wouldn't have helped my cause.  Someone eventually called the news anyway, though the stories  had no real details of the incident and blew it off as "a child left on the bus playing with toys until he was found," as if that made it ok.  

I might have been more forceful at the meeting had I not done some research before going in.  There is a law for minimum age of drivers and aides, but no maximum age.  There is a rule about physical and mental well-being, but that would require us hiring an attorney to prove that she was mentally incompetant.  Then it would be a matter of proving that the Director of Transportation knew before-hand about her mental state, which is a he-said/ she-said debate that we would probably not win. And the point of all this to me, since Hayden was unhurt, was to make sure this never happened again.  Suing the school would accomplish nothing. 

The bus driver was fined $500 but the other bus drivers in the district chipped in to pay the fine for her.  But she had already lost her job and could never work with children again, so I don't think a fine was really necessary.  

I never did get a copy of the police report that was filed, though the CPS worker said she had seen it.   

The Director of Transportation was not held accountable. Though I was told he later resigned for...other reasons. I never got a formal apology from the school corporation, which I did ask for and would have been nice.  I think they could have done more to prevent the incident: alarms, educating staff, implementing a check system. But hopefully they have improved their practices because of the incident. 

I was able to help institute one change, at least.  Apparently a law had been put in place a few years before this, that all new buses had to have an alarm at the back. When the driver turned off the bus at the end of the route, the alarm went off, and the driver had to walk to the back of the bus and turn off the alarm; hence, forcing the driver to walk through the bus in case any kids were still on board. Hayden's bus was built before the law was passed and therefore had no alarm, and was not required to have an alarm under the law. Alarms could be purchased to add to older buses, but were expensive, and in the words of the Director of Transportation, "didn't work very well anyway."  I was told by a source that in fact the alarms were annoying to the drivers, because they were so loud, so drivers would dismantle them so they wouldn't go off, and then hook them back up for state inspections. I tried to call the new bus driver (who replaced the first driver) after the incident, to find out if Hayden's bus had an alarm after all that had been dismantled, or if it truly had no alarm as we were told. She told me that she was told not to talk with me, and that my questions would have to go through the Director of Transportation.  

So instead, I contacted a friend on the School Board (now retired), who helped to get alarms put on all the school buses after the incident. I explained to him that my goal was to make sure this never happened again, and he agreed. Without his intervention I know they would not have added alarms. He helped to get an alarm put on every bus.

This picture was taken a few days after the incident. Hayden was happily playing with his bus toy that Grandma had gotten him prior to the incident, as if buses were still his favorite thing in the whole wide world. Which they kind of were. He was so excited to start riding the school bus when he started preschool. He still loves riding the bus.

I think this story, and the picture above, speak to the resilience of Hayden.  And myself, I'd like to believe. Because people, and life, just keep throwing things at us, and we throw them back and say, "Really?  Is that all you've got?"  Bring it on. We're better than that. And we're not going to let it take us down. I'll see you your people who pass on a hill in a double yellow so they can save 5 minutes on the way to work; those who care more about themselves than the children they should be protecting; your Autism, your allergies, your lead poisoning, your viruses... and I'll raise you a positive attitude, a drive to make each day better, and a strength to keep going that won't listen when you say the word impossible. Not today, it's not. I'll just have to work harder.

Thursday, May 3, 2012

Hayden’s Chocolate Chip Muffins

This recipe is adapted from the Blueberry Muffin recipe on TACA's Recipe Database.

The original goal of adapting this recipe was to incorporate the EFA powder. But Hayden wouldn't eat the muffins with blueberries, so I tried chocolate chips instead. Bingo. Then I discovered that I could just keep adding pretty much anything I wanted to it: veggie puree, protein powder, calcium... as long as there were chocolate chips Hayden didn't pay much attention to the muffin part. You do have to be careful as you add things, that it doesn't get too dense. Although, again, if there are enough chocolate chips... : )

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