Wednesday, January 30, 2013

He's my brother

In the past few days I have seen three beautiful stories about boys with autism, and the bond they have with a sibling. I was especially moved by a video I saw yesterday about a young man named Spencer Timme, whose older brother has autism. Here’s the link: 

In one of my previous posts called “birth order and siblings have made a difference,” from May 12, 2012, I talked about how beneficial it has been for Tate to interact and be taught by his siblings. You can go to that post and read some specific lessons Tate’s siblings have taught him. Here's the link: 

Tate would definitely be an entirely different person if he did not have siblings. Spencer says in the video, “Not one person understands him the way I do,” I completely understand what Spencer is saying. Tate’s siblings know his quirks and what he likes and doesn’t like.  Understanding autism isn’t easy but Tate’s siblings have become quite the experts. Connecting with Tate is difficult. To communicate with Tate you have to be able to think like Tate. I don’t mean you have to have autism. I mean you have to think about what Tate is thinking about (or NOT thinking about) and understand how important the unimportant things are in his world.  His anxieties and obsessions are often in the way. If he is focused on an m&m that he dropped and cannot retrieve, you are not going to be able to talk to him about anything else until that HUGE problem is resolved. Eight hours later he may still be bringing up that m&m and you have to understand how important that lost piece of candy was to him. Minimizing an event like lost candy, while NOT minimizing the anxiety over the lost candy is like a tight-rope-walk. Tate lives in a very small world and he likes it that way. He doesn’t enjoy new experiences. He knows the name of a very few people and interacts with very few people. You have to be a very important person in Tate’s world before he will remember your name…or a cartoon character. He never forgets a cartoon character.  Ha!

Birth order plays a role in the way any child develops but being one of the youngest of seven has given Tate many advantages. His older siblings have helped him to grow and cultivate many of his skills. They push him to try new things and they often provide him with experiences he could not have had without them. They expand his small world by forcing new experiences on him. They bring their many friends and activities into Tate’s world too. Tate doesn’t always welcome these things but we don’t allow him to choose. If he were in charge, he’d never leave the living room and the television set, except to visit the kitchen. One evening this past week, Tate led our evening prayer and he asked God to “get Levi out of my life.” After the “amen,” we told Tate it was not kind to ask God to eliminate a brother, but we were all struggling to keep a straight face. It seems Levi had walked through Tate’s room a couple of times that evening to retrieve something and Tate had not taken kindly to Levi being in his room. Levi’s trespass was on Tate’s mind, and like the lost m&m, it could not be disregarded by Tate. Tate’s fury over Levi’s infraction is especially funny because the boys have shared a room for the majority of Tate’s life. Levi is never unkind to Tate and has taught Tate many things, but Tate has become very territorial about the bedroom. I suppose I can look at the bright side.  Tate is not anxious about being left alone in the room. He loves the independence.  Looking at the bright side is just another thing we have all learned, courtesy of Tate. 

Of course, Tate has one younger sibling, and that has advantages as well. Sydney is a great teacher. She and Tate are on similar levels in some academic and developmental areas right now. I know it won’t be long until Sydney becomes an “older sibling” to Tate, instead of a younger sibling though. She can already do things that he cannot. She communicates better than he does and her motor skills far exceed his. Today at school, Tate was asked to explain who Sydney was. Of course, the expected answer would have been, “She is my sister.” Tate did not give the expected answer. He said, “She is a kid from Russia.” Who else would describe their little sister of eight years as “a kid from Russia” but Tate? She was born in Russia. But, was “a kid from Russia” the RIGHT answer? Not really. It is misleading. Tate just doesn’t get the whole “communication thing.” In the first place, he probably did not understand WHY he had to explain who Sydney was because of the “theory of mind” thing I have blogged about before. He doesn’t understand why you cannot SEE what he sees and think what he thinks. He assumes that everything he knows, you also know. Therefore, why would anyone not know who Sydney is? In the second place, Tate doesn’t see the importance of developing peer relationships or having conversations and sharing information. So, he probably didn’t care if anyone else understood what he was saying or not. He was only attempting to have a conversation at all because it was part of a social skills lesson his mom and teachers insist he takes part in as part of his school day. Thirdly, Tate cannot separate the details from the main ideas. He gets caught up in trivial information. Instead of telling someone the plot of the story, he wants to talk about the tiny detail in one scene. We see this happen all the time and it is typical of people with autism. 

In the video, Spencer Timme says of his brother: “He has the ability to make everyone around him happy” and  “He makes me a better person.” I think Tate’s siblings would say the same thing of him. My heart swells when I see Tate’s siblings interact with him. He keeps us laughing. He makes us all so happy. He is sweet. He is funny. He has taught us all how to be better people. Who doesn’t need someone like that in his (or her) life? Who wouldn’t want to have a brother that helps them to be a better person?   

Update! Spencer made another video!
Spencer Timme's Second Video 

Thursday, January 17, 2013

we have to "give them a clue"

A couple of days ago, I got groceries and had just begun moving them from the cart to the van when a young man came up behind me, very quietly, and startled me. I think I actually jumped. He was waiting for my shopping cart. He works at the store and wanted to return my cart to the store for me. It would have been much more convenient for me to stick it in the cart-return next to me when I was finished, but he thought he was doing me a huge favor by standing there and waiting. He didn’t SAY he wanted to return the cart for me. He just said, “hello” and stood and waited. I could tell he had autism for several reasons. He had the awkward gait, didn’t know what to do with his hands or eyes while he stood waiting, and he had a monotone voice. It was very cold outside and I commented about the temperature. He tried to have a conversation with me about the weather but didn’t really know how. I helped him like I would my son Tate, bouncing “the ball” back to him and asking concrete questions that he would know how to answer. He reminded me so much of Tate and how he would have conversed with someone. 

Tate with Melissa, one of his first
(and best) teachers. 
Last week, our good friend Melissa visited our congregation and worshipped with us. Melissa was one of Tate’s first teachers in his early intervention program. Tate so badly wanted to have a conversation with her. He tried with, “Hey, a church building is where you go to church.” Melissa replied appropriately then Tate tried again: “A few days ago, Levi did something.” Melissa said, “What did Levi do?” Tate said, “He fixed the game cube.” Then he sauntered away without properly ending the conversation. When Tate has a conversation with someone it is usually two exchanges with him pacing back and forth in front of the person he is conversing with, or bouncing in place. The church building is a great place for Tate to practice his social skills. After many worship services I grab Tate before he bolts from the building to sit in the car, and I tell him he has to visit with three people before he can leave the building. He hates it when I do that. He usually picks the same three people, so sometimes I tell him it has to be three people he doesn’t usually talk to. The poor kid. The poor victim he chooses too! Haha They are all great sports and give it their best effort. It is just hard to get him to make any eye contact or make much sense. I’ve turned my church family into speech therapists for Tate. 

The day after I had the exchange with the young man while I unloaded my groceries, I was in another store and saw another young man with autism. This guy was probably about 15 and was there with a teacher or mentor who was supervising him. I imagine the outing was a teaching experience or perhaps a reward for something. The teacher was doing a fantastic job of modeling appropriate behavior for the student. I did not gawk but I was in the same vicinity for quite a while so I listened. The student bounced on his toes when he walked, much like Tate does, and he had trouble knowing what topics were appropriate for conversation. He talked at length about his high score on “Bop-it” and he wanted to talk at length about a brand of bread that he didn’t often see on store shelves. I imagine the teacher was having a hard time keeping a straight face part of the time because the bread topic was so far out there. Tate does the same sort of things. He has no idea what is appropriate to talk about and what is not. He has no idea what kinds of things are interesting to other people and what things are not. 

Tate has announced to his peers at school before that he was going to take a shower when he got home and he sometimes tells his teachers he had a shower that morning. We’ve tried to teach him that other people don’t really care to hear about his showers. He recently tried to start a conversation by telling one of the staff at school that her skin looked old. She is a young woman, quite pretty, and she handled it very well but we all had a good laugh over that one later. A day or two after that incident Tate had a substitute in his classroom that was elderly and her skin was wrinkled. I was so worried about what their day was like. If Tate said anything inappropriate, I didn’t get to hear about it. I wanted to be a fly on the wall that day. On Veteran’s Day, the school invited local veterans to come and have lunch with the students. Tate walked into the office with his para, looked around at several older folk gathered in the office, and started to speak. Tate’s wonderful, insightful, wise para, quickly said, “Tate, think about what you are going to say, before you say it.” Tate said, “Oh, never mind.” Tate just calls it like he sees it, as do most people with autism. 

Tate’s Resource Room teacher and his Speech Therapist are always working hard on teaching conversation starters and how to sustain a conversation. It just doesn’t come naturally to a kid with autism like it does the rest of us. They are teaching him how to tell a joke and the poor school secretary has heard a joke a day for most of the year now. She is so accommodating and laughs for him. She is worth her weight in gold and a huge part of his day.

I cannot imagine how confusing it must be to live in Tate's world. I remember once saying something about "laughing my head off" and Tate coming over to me to inspect my neck. He needed to make sure my head was still attached. Recently someone commented on being "ate up with chiggers" and Tate looked extremely confused.  

We are all working on figurative language. Each week, Tate’s Resource Room teacher sends me a list of three to five new idioms or cliché’s they will be working on that week so I can reinforce them at home. It is so cool when I hear him use one of those at home. He has learned things like “I’m on fire” and “under the weather” and “letting the cat out of the bag.” These are the things that we all understand when we hear them due to the context. They have to be taught, systematically, to a person with autism. Otherwise, they will not “have a clue” what you are talking about.

If you have not ever read, Seeing Ghosts, then click on the link and enjoy. 

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Monday, January 14, 2013

is your criticism really that constructive?

For starters I should probably say:  I am thrilled with my kids’ teachers and their paras this year!  Both my kids are having fantastic years.  My frustrations have nothing to do with classroom teachers, Resource Room teachers, or paras.  Tate and Sydney have the best!!

When the parents of a special needs child get “constructive criticism” from a community member or a school administrator, they have a decision to make.  Do I try to explain things and risk having an explanation sound like I am making lame excuses?  Should I nod my head and smile, ignoring the advice given?  Should I write a scathing letter and tear it up before I actually send it?  Should I write a letter that I have to tone down over and over so I can actually send it?  Should I close myself in a bathroom for a while and shed a few tears, feeling sorry for myself and wondering if the world around me will ever understand?  Should I seek out the mother of another special needs child who “gets it” so I can have a sympathetic ear for a few minutes?  Should I write a blog post and use that as “therapy” for myself?  Should I sigh a heavy sigh and just keep on plugging along?  I’ve done all of these things at one time or another in the past few years.  Today, I considered a letter, but knew it was either going to be the blog post or the tears.  Here’s the blog post:

Sometimes I just want to scream, “How dare you!”  “How dare you judge me, or my precious little girl!  How dare you offer me advice or tell me how I could do things better.  How dare you assume I COULD be doing things any better than I am.  How dare you assume SHE could be doing any better!  Try walking a mile in my shoes and then we can talk.  Try walking a mile in HER shoes and try to manage as well as she does!” 

I started my blog so I could share what it is like for Tate and Sydney to get through their day.  I sometimes aim at the people who work with my kids so they can better understand where my kids are coming from, thus helping those who teach them to be better able to educate them. True, not everyone who works with my kids reads my blog.  True, I have not invited everyone who works with my kids to read my blog.  Although it is public, not everyone in our lives is aware of the blog, nor do I think so highly of myself that I think everyone would WANT to read my blog.  I hope it is being shared in my community and by my friends, to raise awareness about autism, ADHD and the challenges these kids face.  If it helps anyone at all to understand then I am happy.  

When a parent of a child with special needs is struggling to get things done they need to be encouraged, not reprimanded.  If you tell me Tate isn’t eating healthy enough, don’t you imagine I already know that?  Don’t you imagine I have already spent many, many hours worrying about that and working on ways to fix that?  Don’t you imagine I would do almost anything to fix that? 

If you tell me Sydney is late to school, don’t you imagine there is a good reason?  Don’t you know that I KNOW what time the bell rings and I KNOW she is having to use up two or three MORE minutes jumping through hoops and getting a pass to class?  Don’t you imagine that EVERY morning we are RACING to beat the bell so I won’t have to say, “Honey, you are late so go into the office for a pass.” 

Sydney is often late to school.  I’d like to say “through no fault of her own” but I’m not sure that would be accurate.  I also cannot say “through no faulty of MY own” either.  She is late, partly because I dread waking her and going through the morning chaos, and partly because of all the unpredictability of the morning chaos.  Her pills take thirty minutes to an hour to really benefit us much.  (I’ve documented two typical mornings in blog posts on December 22 and April 28, 2012 if you are interested and haven’t seen them before.)  I do the best I can.  Sydney does the best she can and her brothers and sisters do the best they can.  She really cannot help her hyperactivity or the energy or the lack of impulse control. 

Wake her earlier you say?  The earlier I give her meds to her, the earlier they wear off.  By 8:30 PM when I am trying to get her in to bed, she is bouncing off the wall again, talking non-stop, getting out of bed over and over and unable to settle down easily.  If I wake her earlier and start her day earlier then we pay earlier in the evening.  Thus, putting her to bed earlier and waking her earlier is not really a good option for us.  The school staff and her classmates already get the best of Sydney.  Although, her classmates complain often about her they do not understand how much worse it could be.  I often wonder if I sent her to school once with out her meds if they would come to appreciate her more.  Not long after she gets home from school her medications begin to wear off and I deal with the “evening Sydney.”   

Switch medications you say?  We’ve tried several medications and the two she takes are the two that have worked the best and the longest for her.  She likes being calm and she likes being able to think.  She likes being able to have a calm, quiet conversation with me.  She is pleasant and able to learn while on the medication.  She fully understands that no one likes to be around the Sydney that is out of control.  She CANNOT HELP IT!!!  Exposure to alcohol in the womb robbed her brain of the ability to control impulses.  There is nothing she can do about it.  There is nothing I can do about it, except give her medication to help slow her down. 

Some days Sydney is more than a few minutes late to school.  On those mornings it is often because her eleven-year old brother with autism wet his bed the night before, thus adding a shower and the stripping of sheets to our morning.  Or, perhaps I let him try to pour his own milk and that resulted in him having to change his clothes and be reassured over and over that it was “no big deal.”  You see, almost any change in his morning routine is going to result in anxiety.  Do you think YOU could get a kid to school on time if he was pacing and stimming?  I won’t even ask him to get into the car unless he is calm and happy.  I’m NOT going to ruin his day, his teacher’s day and his classmates’ day because he comes to school in “melt-down” mode. 

Get HIM up earlier you say?  Kids with autism often have erratic sleep patterns and Tate does NOT sleep very many hours a night.  I allow him to sleep until the last possible minute if he is still asleep when I wake.  Usually, though he is the first one up at our house.  His teachers often think he appears sick or tired because he gets little sleep. Getting Tate and Sydney to school before the bell rings is always a goal but it is just not one I can afford to make my biggest priority.  If you had walked a mile in my shoes you would be able to see that a child with special needs does not always appreciate our schedules and there are some things that are much more important than getting to school before the first bell rings. 

I’m not looking for sympathy or pity.  I am actually very happy and pleased, even content, with my lot.  I only write to raise awareness.  If you feel like offering some advice or giving some constructive criticism to a mother of a child with special needs, think again.  Are you really close enough to her to offer that piece of advice?  Do you really know what her day looks like?  Why don’t you instead think of a way you can encourage that mom?