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?  

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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. 

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.

http://www.texasobserver.org/autism-inc-the-discredited-science-shady-treatments-and-rising-profits-behind-alternative-autism-treatments/

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.  

Transitions and Junior High on the horizon

Most of my readers are moms. I get a little feedback from time to time, and except for my own grown kids, almost all the comments, messages, and encouragement I have gotten are from my peers. I know I have some readers that have special needs kids, similar to Tate, but to date, most of my readers are moms of typically developing children, many fully grown. I thank you for reading. If you are reading and have any questions about life with autism, just leave me a message. I probably have an opinion I would share. I’m no expert on autism, but I am an expert on Tate.

It’s all about raising awareness. If you understand just a little bit better why that kid (or adult) you saw in the grocery store was behaving so oddly, then my blog served its purpose. If you smile and say hello to the kid (or adult) that has their head down and you get them to look up and respond, then my blog served its purpose. If you are able to have a talk with your children or grandchildren and ask them to be patient with the special needs student in their class at school, then my blog has served its purpose. I beg you to raise your children to be kind to kids like mine. 

Today’s post is about transitions. If there is a word that strikes fear into the heart of a mother of a child with autism, “transition” is the word. If you live with autism then you already know what I mean and you are already smiling or nodding your head. People with autism do not like their boat rocked. For them, “sameness” is safe and solid. Change is frightening and takes much longer to adjust to than it does for you and me. 

When they are toddlers, even the tiny transitions will bring on a tantrum or a panic-attack for your child, thus making everyone in your child’s world miserable. When Tate was very small, a diaper change was extremely painful for him (and me.)  Back then I had no idea what autism was or what could be triggering the huge reaction I got when I had to change him. I’d never in my life heard of “sensory” issues. I became the fastest diaper changer in the Midwest to minimize the amount of time he would have to be uncovered.  Bath-time was even harder. I had five children before Tate who quickly outgrew their fear of baths at infancy, and learned to love to splash and play in the bath water. But Tate hated baths, long past infancy. Then there was the car-seat. He hated to get into it and he hated to get out of it. Changing out of pajamas in the morning and into clothes was always a battle. But then, when it was time to get back into those pajamas at night, the clothes were preferred. He carried the pajamas around with him in the mornings, crying for me to put them back on. I just didn’t “get it.” I stopped using pajamas for Tate and just put him in a fresh set of clothes before bed that he could wear the next day, thus eliminating one of the clothing transitions of the day. All those small transitions were hard on us. However, they were minimal compared to the bigger transitions. Season changes, the need for new clothing or shoes, new bedroom furniture, moving the old furniture around, new paint on the walls, buying a new car, having house guests, all these things were no small thing for Tate. These things had to be planned for and handled with great care to minimize the distress Tate would feel. 

I have blogged before about shoe shopping. A new pair of shoes to Tate was something like a root canal would be for one of us. He was miserable for days and carried the old shoes around with him, so unhappy. I learned to buy two pair at a time, one a size bigger, so when he outgrew one pair it was a little easier on him to transition to a bigger pair because they were so much like the pair he outgrew. Going from shorts in the summer to long pants in the fall was not easy on Tate. Suggesting he wear crew socks, instead of no-show socks was met with shock.

I hear people say that kids with autism don’t feel comfortable in their own skin. I’m not sure what that means exactly. I don’t think that is a good analogy for what Tate feels. He does seem comfortable, in his own skin at home, in his own environment, moving around the house, and transitioning at his own pace. As long as no one is making demands of him, we see very little stereotypical behaviors or anxiety. He does seem to feel comfortable in his own body, but not in someone else’s idea of where his body should be or what his body should be doing.    

Two years ago our rural school was closed. I knew THAT was a transition that was going to be HUGE for us. I avoided telling Tate about it. When Tate heard the kids in his class talking about going to a new school, he became so anxious about the transition he made himself sick for a few weeks. He never sleeps well but he lost even more sleep. He had struggled with staying dry at night for years and had been doing better but his bed was wet every night after that. He went to bed anxious and he woke in the morning anxious. He paced the floors on his toes, bouncing as he walked. This is a stim we see when he is very excited or very worried. 

The anxiety over the new school made shoe-shopping look like a piece of cake. We got through the transition to the new school by making several visits to the new school, taking pictures of the building’s rooms and staff, and meeting some of the teachers. I tried to anticipate all the things Tate would have trouble with and address those issues before they became issues. Over the summer we went to visit the school. I did not start Tate on the first day of school. I asked that his fellow classmates be educated a little bit about autism and Tate specifically before he began class. I asked that every adult that would interact with Tate be told about his diagnosis. Did you know that privacy laws prevent the teachers from telling their substitutes about a child’s handicap? Did you know that privacy laws do not allow the music teacher, PE teacher, art teacher, janitor, lunch ladies, and secretaries, ect. to be told of a student’s handicap? (See my blog post called "Privacy, hiding the diagnosis or hiding from the diagnosis?" from May 2012.) I had to make sure that it was in Tate’s IEP that any adult who worked with him, including substitutes were told of his autism. It is very important that people know of his diagnosis so he is kept safe. 

Tate is in the fifth grade and that is the last year of elementary school in our district. Next year he will be at the Junior High. This time around, Tate’s transition will be huge. However, with maturity and past experiences under his belt, and a Resource Room teacher who is helping us with it (something we didn’t have with the last transition), he may just come through this unscathed. I am still anticipating problems and trying to eliminate them before they happen but things are looking pretty good. Tate has already had his first visit to the Junior High. I wanted his two worlds to be joined together slowly and cautiously and everyone has been very understanding and cooperative. At the current school, the school secretary is a huge part of Tate’s world. She participates in his social skills lessons and is always ready for a “conversation” with Tate. I’m sure it is not in her job description but she is an amazing and caring person who loves kids in all shapes and sizes. So, in an effort to make sure Tate is comfortable at the Junior High, the secretary called ahead and described the role she plays in Tate’s life to the Junior High secretaries so they could step in. They are willing and ready. 

I’m hoping we can keep some of the faces familiar but para support does not follow students in school moves usually. This may be somewhat stressful for Tate. Class moves will be stressful and I anticipate a battle having to be fought over how Tate manages the halls in a crowd. He will need an adult to help him with those transitions. Yes, there is that word again. Unless you live with autism, you may not ever understand how that word can make my heart skip a beat. We wouldn’t put a second or third grader in the hall full of junior high students and expect them to be able to navigate so I can’t imagine putting a child with special needs that functions at a second or third grade level into a hall full of junior high students either. 

I’ve been told that para support in junior high is so much different than it is in elementary school. Currently, Tate has a para that is with him most of the day and a couple others who step in for small amounts of time. This works very well. Tate knows them, and just as importantly: THEY KNOW TATE. He is hard to “read” and hard to understand. His paras now can see a meltdown before it happens. They can “read between the lines” when he is trying to tell them something and figure out what he is talking about. If Tate is expected to have a different para for each class next year then he will not do well. He will never really become comfortable with any of them and they will never really get to know him either. You see, each class move and TRANSITION from one para to another and one class to another will leave him feeling anxious and unsettled, thus setting him up for failure. 

I have many other worries about the transition to junior high and how Tate will cope. There will be six teachers (and possibly six paras) for me to educate about Tate instead of one or two. There will be much more lecturing involved in classes and Tate may as well not be there if the class period is a lecture because he cannot process language quickly. He will basically be using his day to stare into space and stim. Some of the subject matter worries me. For some reason, sixth graders in our district spend nine weeks studying the holocaust. I’ve had five before Tate and I always dread the huge holocaust projects. There will be posters and reports and books to read…. None of which will be productive for Tate. He needs to be studying things that are much simpler and easy to comprehend. Hitler is definitely not a person Tate will need to know anything about in his world. These are the battles I will be fighting as Tate transitions to junior high. If I push too hard to keep Tate from inclusion and studying things like the holocaust then he ends up in a room full of children much more handicapped than he is, thus ending his social education. If I push hard for inclusion then he sits in classes with students 3 and 4 years ahead of him intellectually and makes no real progress academically. What’s a mother to do? If you know anything at all about these kinds of things and would like to share, I’d love to hear what your experiences have been!