Thursday, February 21, 2013

prank phone calls and teaching Tate

I have so many stories to share, but they are not all related to one topic (unless it is just autism, in general) so this is going to be a pretty random post. 

Tate has tried his hand this week at practical jokes. He will tell me in a whisper that he is going to prank someone, usually Levi, and then do something really silly. A few nights ago, Tate dropped a clothes hamper over Levi’s head. Of course, Levi saw it coming and cooperated so Tate could have his fun. 

We found out last night that we would be staying home today for a snow day. Tate became so excited he began to chatter and he became very animated and active. He isn’t usually much of a talker so when it happens we love it. He gets really talkative sometimes when he is happy. A day I will always remember is from a trip to pick out an Xmas tree, in 2011. It was one of the first times he had EVER become a chatter-box for a day. Most days he is pretty quiet. 

Tate’s favorite prank right now is to go find a sibling and tell them that Mom has been calling. Then he follows them into the room and when they ask what I wanted and I look confused, Tate runs and they chase. Last night he did it to everyone, at least once. They are great to play along. Tate has started making up jokes that are usually not funny too. Last night he told one he made up: “Why did the pen not write on the paper? Because the paper fell on the floor!” We usually laugh much longer and louder than is worthy of such a joke because of the kick we get out of Tate telling a joke. Most kids make up their own jokes around age four. I know because I had five kids before Tate that told me hundreds of jokes. I have heard “knock knock” many, many times in the past twenty years!

Last night Tate told me he was going to call his older brothers who live in Tennessee and prank them on the phone. I could hear his end of the conversation with both boys. When they answered, Tate yelled into the phone, in a voice that is cracking due to his age, “Hellooooooo, How can I help you?” Then he said, “I don’t have the wrong number, YOOOOOUUUUU have the wrong number.” He did a lot of giggling. He told one of the boys “Congratulations, you have just won a new foot.” We were laughing pretty hard on this end but I haven’t talked to my boys yet to find out if they understood much of what he was saying. Knowing them, they loved the call. I couldn’t ask for better kids than I have. Tate has a whole family of therapists. For more on Tate's siblings and all that they do, read here: He's My Brother

Totally unrelated to the above: This past weekend we skipped an afternoon of school and went to the movie theater. That is not the real story I want to tell here, but it is a story in itself. When Tate hears the release date of an animated movie or a movie that strikes his interest, he immediately begins to make plans to attend the opening day of said movie. If you are not involved in the life of a child with autism, you probably will not understand the importance of these kinds of things to us here in the Smith family. When Tate makes a plan, if it is not altered or shot down, IMMEDIATELY, then it is set in stone. The mind of a child with autism is much like stone. Plans made are not easily changed. Usually, I am fine with taking Tate to a movie on a Friday after school. He doesn’t ask (demand) that often, maybe every-other month. So, last Friday was one of those times and I had agreed to take him. After about three days of listening to him talk about the movie, my senior in high school, told me that my presence was required at one of her school events. She told me IN FRONT OF TATE, so there was no time for me to prepare myself for his anxiety attack. His face turned blotchy, he began to choke, and he started pacing the floor on his tiptoes. He actually said some pretty hilarious things in his misery. He was trying to talk us out of our alternate plans and saying things to his sister like, “I’m sorry, but we won’t be able to attend that game. You’ll be on your own.” The funniest thing he said was, “If your wedding is on a Friday night, we won’t be able to make it.” Tate’s oldest sister came up with the perfect solution. She would take Tate out of school early on Friday and take him to the movie. 

I told that story to tell this one: At the theater, a young man in a wheel chair was taking tickets. Tate got right in front of him and even crowded him and said to me, “Hey, what’s wrong with him?” I was totally taken back. I had no idea what to do. I knew I needed to use the moment to teach but what was the proper way to handle the situation? I had no time to decide. I said to Tate, “You can ask him, why he needs to use a wheel chair.” Tate said to him, “What’s wrong with you?” The young man said, “I have a disease.” Tate said “Oh” and walked away. I hung back to explain to the young man that Tate was lacking in manners because he has autism and doesn’t have many social skills. The guy replied that he could tell and he was very gracious, although we were both embarrassed. As we got settled in our seats and waited for our movie to begin I talked to Tate about how impolite it is to ask someone what is wrong with them if they are sitting in a wheel chair. He seemed to understand. A few days later, Tate asked a person with a blemish on their face, what was wrong with their face and I had to repeat the lecture. If that person had been in a wheel chair, he wouldn’t have asked them perhaps but I hadn’t covered acne.  If you think about it, etiquette is very hard to teach. It is okay to ask a friend who shows up to school with a broken arm, what happened to their arm, but very rude to ask a stranger in a wheel chair what happened to their legs. Typically developing kids just learn these things from watching and absorbing the examples around them. Kids with autism have to be taught everything they know systematically. They have to file away each little lesson and each little variance to each rule so they can know how to act. When something new comes along that they have not seen before, they don’t know what the proper response should be. They don’t mean to be rude. They just have no idea what is acceptable and what is not. These kinds of unwritten rules are often referred to as “the hidden curriculum” in schools. Teachers don’t have to teach the hidden curriculum to the typically developing kids but the kids with autism do need to be taught all the unwritten rules. I feel so badly sometimes when I hand my special needs kids to their teachers. I’m asking them to give more and do more for my kids than their job descriptions ever called for. I don’t think that colleges give a lot of instruction to their teaching students on the hidden curriculum. Special needs students, fully included or not, require so much more work than the other students. They are also much more expensive to educate, due to the need for para support, other services, and modified materials and equipment. I cannot sing praises loud enough for my kids’ teachers. 

A little bit more about hidden rules that Tate cannot learn without systematic instruction: One day this week when I dropped Tate off at school, I watched him walk into the building as usual. A girl much smaller than him was holding the door, waiting for Tate to catch it. A boy much smaller than Tate was right behind him, waiting to enter. Tate pulled the door open, slipped through and dropped the door. The little boy behind had to reopen the door because Tate had not pushed it open wide enough for him or held it that extra second it would have taken for him to grab. These kinds of things come so natural for the rest of us. Tate is not mean. He just doesn’t think about others, their thoughts, their feelings, their plans, or their motives. That part of his brain isn’t working. He cannot help it. If we teach him the “rule” for holding the door for the kid behind him then he will hold the door next time…. But then there will be variances of that rule that come up. What do you do if you are in a crowd and there are a lot of people behind you? What do you do if the person is on crutches or pushing a stroller and you need to move out of the way a little while you hold the door? All these things would leave Tate confused about what to do. I asked Tate’s teachers to help me teach Tate about holding the doors. The teaching opportunities for social skills abound at the school. Tate’s classmates are often involved in teaching new skills. I appreciate them so much. 

If you liked this post, you might also like this one: What is Autism?

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Friday, February 15, 2013

celebrate autism?

Tate, age 3
I just don’t get it when I hear a parent of a child with autism say they “celebrate” their autism. I have heard parents say, “I wouldn’t change anything about him.” What are they thinking? I’d change Tate in a heartbeat if I could and I have been doing everything I can since he was a toddler to minimize as many of the stereotypical behaviors of autism that I can. 

Here are my black and white thoughts…. If your child was paralyzed and you knew he’d be able to walk with a surgery or a special piece of equipment, would you say, “I accept his paralysis and will not seek help or a cure?” If your baby was born deaf, would you “celebrate” his deafness or would you seek a physician that was able to repair his ears and give him the ability to hear? There is no cure for autism but there are many ways to minimize the behaviors that will cause that child to miss out on opportunities. If you truly celebrate the child’s disability and accept it then would you be asking therapists for help, reading to find the latest research, and seeking the advice of specialists in the field of their disability? 

I met a parent many years ago that told me she had a son with autism and wouldn’t change him for anything. In the same conversation she told me about all the therapies and programs he was participating in. ???? Wait a minute? Didn’t you say, you wouldn’t change him? I’d do ANYTHING I could possibly do to give Tate a better life, a life free of autism. I’d let them take the brain from my own head and give it to him if it would mean he could live the rest of his life without autism. I do NOT celebrate autism. 

Does that mean I have less love for Tate than the parent who says they “celebrate” autism? I think not. I actually have a hard time believing that anyone really celebrates autism. I would believe they have come to ACCEPT autism, as I have, and what they celebrate is the love they have for their child. I love Tate with all my being but I HATE autism. Autism has stolen the REAL Tate from me. He will never become the person he should have been.  What? You think I have it backward? You say the Tate with autism is the impaired Tate. If he had been born blind and I found a doctor who could give him sight, would I have been wrong to do it? Would I have been a bad parent for not accepting the blindness and the “real” Tate? If a person has a life-long disability (deafness, blindness….) they learn to live with it and their parents accept it and they love that child, disabled or not. BUT, they give that child every opportunity available. They teach them sign language, how to read Braille, or anything else they need. I somehow doubt they ever celebrate the deafness or blindness. I do NOT celebrate autism. I do NOT celebrate his sensory issues and I try to help him overcome them. I do NOT celebrate his inability to communicate well and he gets lots of teaching and therapy. I do NOT celebrate his social deficits and we work on them constantly. I do NOT celebrate autism…. But I DO love Tate. Tate is a blessing to me. Autism is not a blessing for Tate or for me either. 

See this post for more about this topic: Is autism a disability?
And PLEASE, if you are an autism parent or a person with autism who feels very differently than this, read this post before you comment: What did I do to deserve this?  

Find us on Facebook at Quirks and Chaos. Or, if you liked what you read and want to become a follower, click on the Google Friend Following gadget on this blog. It's over on the right side and asks you to subscribe. Or you can add the URL (the web address in your search bar) to your Reading List. You can do that by clicking the plus sign in front of the URL. Thanks! 

Wednesday, February 13, 2013

my reputation, bruised and healed

Reputation. It’s something that is pretty valuable to a person, especially to a Christian. Most people like to think they have a decent reputation and that people know they can be trusted and liked.   

I always knew that the first few years of our experience with Tate’s public school education had probably bruised my reputation somewhat. Back then, I had to argue, write complaint letters, and even consult with the state board of education about getting a free and appropriate education for my son with autism. I begged a couple of times with tears, and once, after Tate’s para was taken from him and given to a child with greater needs, I had a meeting with the ones in control and yelled. That was the first and only time in my life I have ever yelled at anyone I was not related to (ha.) Although I didn’t say anything obscene or untrue, I’m sure I probably should have handled it differently. The one who held the reigns of Tate’s IEP and I often did not agree on what Tate's education should entail. I felt like I was at the mercy of a system that had no mercy. Consequently, my own reputation was damaged in dealing with the public school staff and trying to obtain greater services for my son. 

And then.... our rural school was closed and we were forced to move our children to town for an education. I could feel the staff tense up when I walked into a school building. Never mind that I had five older children who had been to the Junior High and High School in town and I had NEVER caused a single wave. Never mind that I had NEVER had a problem with a single general education teacher or principal at any level. Never mind that I loudly sang the praises of almost every para Tate had ever been assigned. I got a reputation from the whispering about how I had fought for my son's right to an appropriate education.

Today, I heard from someone (an educator) I have learned to respect and admire very much. That person said one of the nicest things I have heard since we moved to town. Although I cannot quote it word for word, it was something like this:  “You had a reputation when you moved your kids to town. We heard awful things about you. Not one of them turned out to be true. Now, when someone tries to say that you are not easy to get along with, one of us always says, ‘She is not like that at all. She is very reasonable and she only wants what is best for her kids.’” I was very touched. I hope I can always be the mother I am supposed to be to Tate and Sydney and advocate without ever having to cry, beg, and yell again. Somehow I doubt that will happen but I do know I can do it. I can cry, beg, and yell, still be okay with God, and heal my reputation with men in the end. 

Thanks for reading. 

Sunday, February 10, 2013

diet therapy? show me the data!

I’ve done a little reading (okay, a lot of reading) about autism in the past few years.  I’ve been to a few conferences, heard a few speakers, and met a lot of parents of children with autism.  I’m not an expert on autism but I have tried to educate myself.  There is no cure for autism.  However, sometimes I read about the latest “cure” and wonder how many frantic parents are buying into these hopes.  When a parent is trying desperately to help their child, they want to be DOING something.  They often grasp at straws.  There are some pretty wild ideas out there from time to time.  Sometimes parents are so desperate, especially right after the diagnosis, they will try almost anything, out of desperation.  I think most of us go through it.  I imagine it could be divided up into stages like grief is: denial, anger….  

I’m a black and white thinker so I usually want to hear about the research behind an idea and take a look at the data.  Swimming with the dolphins and mud baths do not have the data to back them up like discrete trial and early intervention does.  Therefore, we did not mortgage the house and rent a couple dolphins.  We did, however, mortgage the house and commit to several years of early intervention.  I am a firm believer that early intervention is the key.  I have data to back that up. 

I’ve read about vitamins and diet therapies.  I’ve talked to people that fully believe in them, but I’ve never been convinced.  I did have Tate tested for allergies and he was allergic to nothing.  Of course, almost anyone would feel better eating healthier.  I would never suggest there are no children with autism who need a special diet but I don’t believe it is at a rate that is any greater than the general population.  I would have to see the data to be convinced.  The data of both populations, that is.  I have friends without autism eating gluten-free and they say they feel a lot better.  I have friends who are vegetarians who say they feel better too.  That is great and I can appreciate that.  So…. don’t misunderstand.  I’m not bashing diet therapies if you see results, but I am not taking Tate down that road at this time.  I do know of a mom in my community who swears that diet therapy and vitamins is “the answer” and is very vocal about it but no one seems to see an improvement in her child except her.  Of course, that is only one child, and since mother knows best (and I do believe that) I’m happy that she is happy with the results. 

The link below is one of the best articles I have read in a while about diet therapies and why they cannot be relied on as a reliable “cure” for autism.

I read the articles put out by Autism Speaks and other organizations.  I keep waiting for all the claims made to be backed-up with studies.  Often the articles make a claim that gluten-free diets make a difference but have no data.  Other articles put out by the same groups will say that data does not support the theory that gluten-free diets help children with autism.  However, any article that I ever read about behavioral therapies has favorable data to back it up.  THAT is why I have always turned to behavioral therapy for Tate.  We followed him around with a clip-board taking data for years and it proved the results.  If I had been doing diet therapies at the same time, I probably would have claimed the diet therapies did great things for my son.  If you’ve done diet therapies and NOT done other things, did you take data?  Do you have the data?  Taking data is a pain but I cannot believe it would be any more painful than watching a child’s diet and trying to remove wheat and milk.  We need parents who are using the diet therapies and NOTHING else to take data and compile it.  We need some clinical studies by reputable groups.  Show me the data!  

A few days ago I was doing a little reading about seizures and autism.  They are often co-morbid, meaning many people with autism also have seizures.  There are many things that can be co-morbid with autism: depression, Tourrets syndrome, ADHD, Obsessive Compulsive Disorder, to name a few.  Sometimes, some of these things show up when a child reaches puberty.  Tate is there and I have been watching him, knowing it could happen.  So far… So good.  One of the articles I read was written by a mom who has an interesting theory.  She believes that the stereotypic behaviors people with autism display, such as laughing inappropriately, becoming fixated on an object, posturing, or eye-gazing, are not really self-stimulatory but seizures.  She had already had MRIs performed and doctors tell her that her son was not having seizures but she continues to believe the self-stims are seizures.  Perhaps her child is different than mine.  I cannot know.  But I do know that Tate is not having seizures when he is wiggling his fingers in front of his eyes, crossing his eyes, squinting and peering at things at an angle, giggling at nothing, or staring in to space.  He is stimming.  Period.  It is part of autism. 

Sometimes I think, we (as parents of children with autism) grasp at anything that will help us to find the whys of the autism.  We want so badly for there to be a way to fix it, or an explanation that can help us make sense of it so we chase the slimmest possibilities.  On one hand, I’m thankful for the people who do pursue these ideas.  Someone came up with the idea to give kids with ADHD a stimulant instead of a depressant and that has totally changed the way kids dealing with hyperactivity are treated.  That, is just one of many examples. 

Thinking outside the box, sometimes leads to great things.  Tate learned to regroup in math because his wonderful para got the bright idea to try it on the i-pad.  Tate had failed to learn the concept while using pencil and paper for a long time.  It took only a few minutes of “playing” on the i-pad and Tate mastered the skill.  Children with autism, all over the country, are using i-pads in their classrooms and great things are happening.  So, I pick and choose.  I chose early intervention.  I did not choose mud baths or holding therapy.  I pick the i-pad.  I do not pick removing gluten.  I do not choose dolphins.  I chose hiring a Behavior Therapist who has become like family to us and who has worked with hundreds of children with autism.  Ironically enough, that behavior consultant has some clients that use diet therapies and other therapies that do not have research to back them up.  How could they claim the other therapies are THE THING that is helping their child to improve if they are also using behavior therapies?  Some of us have ONLY used those behavior therapies and also seen the same fantastic improvements in our children.  Behavior therapy has the data to back it up.  Many studies have ben done.  Show me the numbers.  I believe in data.