Friday, March 21, 2014
Friday, February 21, 2014
Friday, October 11, 2013
Thursday, June 6, 2013
Wednesday, May 29, 2013
My beautiful friend Tracy(and yes my name is Tracy too so we started out on a good note!) wrote this post for me. Her words make me feel like there is real hope for an Autism enlighten world. This all happened about a week and a half ago, right after we saw too many Autistic children in the news for elopement and drowning.
OK, so they weren’t actually the worst five minutes of my life, but that’s just luck.
Something has come to my attention, and I can no longer stay silent. First of all, I am a parent of two wonderful girls, and no, neither of them is autistic. I do not live in the world that most followers of this blog live. I follow Mommy Buddy, because she is my friend, because I adore all of her children. I love to engage Emerson and see how he interacts with the world. I laughed out loud when I found him dancing in my shower, well, after I got the razor out of his hands. And that is the thing about autism that I am learning with Emerson. Where they go can, and will simultaneously make you smile, change your thinking, and terrify you.
After months of my promises to help, Tracy relented and joined us at a pool party. Our older girls were celebrating a classmate’s birthday and we all had a great time, end of story, boring guest post.
Except the happy ending was pure luck. Towards the end, after we moved from the pool to the clubhouse (with a locked gate between us and the pool), Tracy needed to change a diaper, Emerson was happily eating pizza. She asked me to watch him.
This was the “hand off.” If you don’t know what I mean, you probably aren’t a parent, and definitely not the parent of an autistic child. http://www.heartofsailing.org/Docs/Autism%20Safety%20Toolkit.pdf describes this as the moment that responsible adults change who is monitoring the autistic child. This is not someone asking society to take responsibility for her child, this is one parent to another, or in our case, one parent to a trusted friend who has offered to help “in any way.”
And now I am going to interrupt myself. According to http://nationalautismassociation.org/resources/autism-safety-facts/, In 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger after wandering/elopement. I knew this when I took responsibility for Emerson (Tracy told me before she gave responsibility for him to me, so that I would understand my responsibility better). And while I knew wandering/elopement was a potential issue for Emi, I later learned that Roughly half, or 48%, of children with an ASD attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings (taken from the same web site).
And back to my story. I started strong. I was in it to win it, this was my chance, I was gonna prove that I am helpful and trustworthy. I stared at him. He didn’t seem to be aware of it. I stared at him some more. I knew he could slip away at any moment and I was ready. Then his sister got up to get a piece of pizza, and I helped her out. He was still there. I resumed staring. Then the woman next to me asked me a question and I answered her. When I looked up later one minute, two minutes, three?, Emi was walking into the building with his mother.
It isn’t so much that he got away from me but that I didn’t even KNOW he got away from me till he was back.
Have I mentioned there was a pool on property? Have I mentioned that 91% of U.S. deaths reported in children with ASD 14 and under were due to accidental drowning?
His mother found him standing at the gate to get into the pool area. And I can guarantee one of my nice neighbors would have let him in. He was dressed for a swim and there was obviously a kids party, which would have made strangers comfortable letting a child into the pool area.
I inherently understand that to call that the worst five minutes of my life is melodramatic, but my brain can create so many other scenarios where the cards did not line up right for us. The “what ifs” that play through my head are dark, and scary, and leave me unable to look a friend in the eye because I have let her down in a way that NO parent should EVER let another parent down.
And yet, she is still speaking to me.
Because he has gotten away from her too. Because she knows how hard it is to keep track of an autistic child.
And anyone who thinks you can monitor the safety of another human being 24/7, regardless of effort, is fooling his or herself. Or just plain mean (I have not ruled out crazy), and completely ignorant. All any parent can do is her best. And with Autism there is a steep learning curve. And we give thanks when we get to call it a learning experience and move on to another day.
I know my friend has been under attack for her views on this matter, and I could not stay silent. I have five minutes of experience in being the sole protector of an autistic child, her autistic child, and I just thank God he survived me.
And our hearts are filled with compassion for those who are not so lucky.
For additional support/resources. Try http://awaare.org/ for help in creating a wandering emergency plan, brochures to share with neighbors, and preview questions that could help first responders in the event of an emergency. And remember: “Search Water First!”
Now, if someone could help me down from my soapbox, it is pretty high up here . . .
Monday, April 22, 2013
I remember back a million years ago, to the end of 2008 or so. My son was about 16 months and it was becoming obvious...he was different. He was so laid back and not at all demanding so it was easy to brush off my fears and say "He's fine. Boys are just less clingy right?"
These were the early days. My mother was pushing me to find out what was up with him. He wouldn't really respond to his name and wasn't talking at all among other weird things. His babble was this crazy alien babble and bar codes were like the coolest thing on the planet. Something was going on, but what?
"I just need something I can google!!"
My mother would chime over and over again.
Finally she usurped my authority and emailed Easter Seals. I'd like to say I was a graceful, proactive mom who called ECI myself about my 18 month old and my concerns, but no. My Mama did. He started services immediately, January of 2009 at 19 months for speech delays. He soon qualified for occupational therapy and the A word started floating around. Again it was my mom who kept going back to it, while I tried to ignore it, like a buzzing gnat. I have to say my mom kept me sane in those days. I started getting google happy myself. It seemed like the only outlet to the HEAVY question mark that floated around my sweet baby boy's head. What was going on with him??
In those early days I tried so hard to find people going through the same thing. Having the same fears. I know lables Get a bad rap but It's almost like a kind of purgatory not having one. Not knowing why your baby isn't like all the others. Feeling that crushing question mark permeating every aspect of your family's future, because let's face it, your mind will go to the worst possible place when given free reign.
I would write here and there when I found that the pressure was going to make me burst or pop some other much needed valve. We ended up lucky and only had about a 6-8 month wait to get in to see the developmental pediatrician. My sweet 27 month old BABY was given an official diagnosis of High Functioning Autism and Sensory Processing Disorder. I can remember after they told me, looking at me I guess waiting for me to break down. All I could feel was this inappropriate laughter bubbling out. That question mark was gone!! Albeit replaced by a puzzle piece but that at least meant a direction to move in, a group of people to seek out... Something to freakin GOOGLE!
After that, over the years I kept thinking about that awful time, before the diagnosis. That was the loneliest, most frightening time of my life. After that I would randomly meet a new parent, see the effects of the heavy question marks that had so recently been all over my face and end up pouring my heart out to them, knowing exactly where they were and just how hard not knowing was. I would describe our experiences and see how just hearing that truly helped. It made me want to help more.
It wasn't until 2011 that Mommy Buddy from the planet Autism was born. I would call Emerson buddy so much that one day he looked at me and said "Mama... Buddy?" He always seemed like an alien being, to be figured out, but bound to me, like I was supposed to be his liaison to the world and help him understand it. And vise versa.
So I finally had a place to compile all of my word doodles and observations in one spot, rather than lose sheets of paper that ended up as the back of scribble MASTERPIECES.
Over the last year and a half I have connected more than I ever thought possible. I had no idea Mommy Buddy would become my life line. I have met SO many wonderful people and formed REAL bonds. Whenever I see a brand new page start I feel overwhelmingly motivated to help them. Give them the opportunity others gave me, because I can see that they too are addicted to that feeling of need. NEED to help the parents still in that purgatory, still living shrouded in the worst fears for their child. And the ultimate feeling of community and FAMILY that comes from being a member of the "I love an Autist" club. Like any family we have our issues, we fight over things we all feel passionate about, but we support each other like nothing else. I'd say that is the very most unsung benefit after diagnosis. Our community makes me feel like I have an army behind me where ever I go and together we can truly change the world for the better.
Friday, March 15, 2013
March 1, 2013
Reported by Mrs. G
"I arrived in the classroom around 9:35 AM. Another instructional assistant took Emerson to Specials because I was working with another student that was having a melt-down and needed my attention. When I arrived, the IA told me that Emerson had a wonderful computer class and that she would bring me his point folder in a little bit because she forgot it.
I had another student with me in the classroom that was calming down, so I distracted him by allowing him to participate in the lesson that I was presenting to Emerson. The goal right now for Emerson is to work on comprehension of reading and to do this, retelling stories is a good way to practice. The Kindergarten students were reading a Dr. Seuss story as per there lesson plans for ELA, so we did so as well.
I turned on the computer to show it via YouTube, but had complications with the technology. I thought I had it fixed several times, but called both students back and forth from the kidney table and my desk because I thought they were going to have to watch it from my laptop. Emerson was doing very well. He was listening to what I asked him to do, and was patiently waiting at the kidney table for my instructions.
I was finally able to fix the technology problem and both students watched the read-aloud of Dr. Seuss’ Horton Hears a Who. After watching the story once, I asked comprehension questions to both students. I realized that Emerson was only able to tell me parts of the story, so I decided to let him listen to it again. At this point, I was still trying to maintain my other student, so I brought the bean bag over for him to sit on and watch the story again.
When I sat on the floor beside both students, I got a phone call from Mr. S telling me that Mrs. Quigley was sitting outside my classroom door on the floor. He said that she had her ear on the door and was on the phone. He was worried about the way she was acting and if anyone knew about it, so he told me he was going to tell Mr. H. I asked him if he could stop by the classroom before he went downstairs so that she would stand up and possibly come inside to observe instead. He agreed and quickly came down the hallway.
When he arrived at the classroom, he told me that she didn’t budge and that she was trying to ask him questions that he didn’t feel comfortable answering. I told him that he didn’t have to answer them if that was the case, and e could direct her to either me, Ms. R, or Mr. H. He told me that he was going to get Emerson’s folder from PPCD and to tell Mr. H and that he would be right back. He did this quickly. When he came back, she was still attempting to ask him questions outside the classroom. He brought the point sheet in to me and then left the classroom to go work with another student. Mrs. Quigley remained outside the classroom hiding from view.
I continued on with my lesson. Through-out this whole time, I was using choices to help guide Emerson to re-tell the story and to give me details of what he watched. I would give him two answers, one was right, and one was wrong. He did very well after he watched the story the second time.
After this activity was over, we moved on to working on Lexia. At first, Emerson didn’t want to work on Lexia, he continually said that he wanted to play on cool math. Even though Emerson said no, he eventually complied with my directions and sat at the computer. It took several times for him to keep the Lexia program open, be he finally did and we began working on the next section of the program.
In the middle of the activity, he started to make noises and cover one of his ears. I gave him time to process and I asked him to use his “big boy words” and tell me what was wrong. I gave him choices to pick in order to express his feelings. I asked him if it was loud, if it was too much color, did the noises bother him, did he want to take a break, etc. He continually said no, but complied and opened the program back up. He started making noises again after starting Lexia and I gave him time to process and take a break at the computer for about a minute or so. The entire time, I was sitting about a foot away from him.
He continued to make noises with his hand over his ear. I explained to him that he had done a wonderful job at computer class, at re-telling the story, following directions, and he only had to complete one lesson and he was free to play on cool math before we went down for lunch. He continued to make his noises and say no... at this point I hear Mrs. Quigley behind me and Mr. H came rushing up behind her. She began to yell at me saying that she knows her son and this was a full- out meltdown and that I obviously did not understand what was happening. She picked him up and she put him in her lap after she sat in the other chair at the computer station. I did not feel comfortable. I stood up and told her that he had been telling me that he wanted cool math and he was attempting to escape the given activity. She yelled over me telling me that my statement wasn’t true and that he wasn’t escaping. I looked at Mr. H and backed up telling him that I was extremely uncomfortable. I stood by him at which time he told me that I was okay.
Both Mr. H and I stopped talking and I listened to what she was saying to Emerson. She was asking him if he was okay. He told her that he wanted to go home. She explained to him that he needed to stay at school. She then asked him in specific words if he was trying to escape the task that I had assigned to him. His response to her was, “Yes.” She then explained to him that he needed to listen to everything Ms. G told him and that he needed to follow directions. At this point he was calm and she put him down. She explained to him that she was going to talk to Mr. Halbert out in the hall and that she would see him in a minute.
I continued to work with Emerson for the next 5 or 10 minutes on the activity. I shortened the lesson and allowed him to only complete a part of it. At one point, he asked to take a break on the bean bag. I praised him for using his words, and allowed him to sit on the bean bag for a break. I set the timer for three minutes, and explained to him that after it went off, we would complete the activity. He said no several time, but eventually got up when the timer went off and sat down at the computer again. It took a little while, but when he was done with the activity, I praised him for doing a wonderful job and that I was so proud of him for following through and completing his assignment. I gave Mr. Halbert a thumb up because he was looking through the window on my door.
At this time, I asked Emerson to get his folder so that we could go to lunch. He stood on the blue square and I waited until it was clear to open the door. When we walked out, I praised his choices to his mother and she seemed happy. She explained to him that she was going downstairs to talk with Mr. H some more and that the silver car would be picking him up when school was over. She then corrected her statement saying that she was wrong, and the van would pick him up. She told him to enjoy his lunch and have a good rest of his day. He said he wanted to go with her several times, but after she reassured him, he began to walk with me down the hallway.
We then walked down the hallway to the elevator. I dropped him off at the cafeteria with PPCD and came back to my classroom."