A Clean Room and A Precious Find

My fourteen-year-old son, Tate, is six feet and three inches tall, exactly the length of a twin mattress. For two or three years I have talked to Tate about getting a bigger bed, bringing it up fairly often. Each time he became anxious, adamant that he did not need or want to change beds. Tate has autism and change is hard for him. About two weeks ago, I could tell he was possibly warming up to the idea so I pushed harder. I wanted to let him decide, and this week he has declared he is ready. Today, I went up to clean his room, in preparation for the moving of furniture this weekend. We will be moving a queen sized bed into Tate's room Saturday.

Cleaning Tate’s room is always an adventure. He has things placed exactly where he likes them, and he does not like others entering “his space” either. I often clean Tate's room while he is at school but it’s July and the kids are all home most of the time. I try to respect Tate’s wishes for the most part, even his eccentricities, knowing he cannot really help having them. But, at the same time, even a kid with autism needs to conform sometimes too. A reasonably clean room is one of those aggravating things my son just has to accept for me to remain sane myself. Tate is not quite capable of keeping his room clean himself, although he is making progress. His eyes do not seem to be able to see a mess in quite the same way my eyes do. Siblings often pitch in to help with the work and it goes quickly. Sometimes Tate's siblings are better at motivating him than I am too. 

There are four large plastic tubs in Tate’s room and a couple of baskets. They contain toys he never touches: some that were his brother’s favorites, some that he got for Christmas, a few that never even came out of the packaging, all gathering dust. When I suggest getting rid of anything, Tate is usually resistant. There have been a few things that are far too babyish for him that I have been able to convince him to let go. Today I snuck a few things out that I was sure he wouldn’t miss. I vacuumed and dusted and carried out trash. I rearranged some things on shelves and made more room to display some of Tate’s artwork from school. He endured it all quite well, only becoming upset with me when I took some things downstairs to wash. Some of the anxieties and rigidities that Tate has lived with for so long seem to be loosening their grip on him a bit. He is maturing.

The last time we made drastic changes to Tate’s room, he was about eight years old. He was sharing a room with his brother Levi and we’d gotten them matching loft beds. The boys loved them. But we had not put enough thought into it, as Tate was still wetting the bed occasionally. With the added time and effort it took to come down from a loft bed, the accidents got much worse and Levi and I seldom got an uninterrupted night’s sleep. So, after trying many tricks and training programs, and making no progress with staying dry at night, it was back to the furniture store. We came home with a captain’s bed that matched the loft beds and we switched Tate’s out, giving Sydney the loft bed. For at least two years he could hardly stand to go into his sister’s room because HIS bed was there and it reminded him of how he’d been “cheated.” He has been in that twin-sized captain’s bed ever since and has not wanted to make any changes. His brother moved into another room a long time ago, giving Tate the opportunity to use the other loft bed but it no longer interested him. And autism reinforced for me once again how uncompromising it can be.

While cleaning Tate’s room I came across things that brought back precious memories, like Tate’s pet rock named Rocky. I had not seen Rocky in years. (See link below to read about Rocky.) I uncovered enough lip balm to last us all for years to come, and many typewritten lists. Tate loves lists. There were lists of movies, lists of movie personalities and lists of gifts Tate wants to receive. And, among those lists, I found something very precious that blew me away. It was a story Tate had typed out. It made me smile because it was so much fun to read. It made me cringe because the spelling was atrocious. It left me excited because it was something he did on his own, without help. It caused me to choke up because it was imaginative, and autism makes creativity and imagination harder for people with autism, so writing a story is not something that comes easy for him. I edited it just a bit so it is easier to read but changed none of the wording. I’m thinking he stole the first line from Snoopy perhaps but the tragic and abrupt ending is all his own. Read and enjoy.

It was a dark night. A man who is someone who can turn people into animals. Batman, Robin, R. L. Stine, C-3PO, and R2-D2, team up to stop him. They go to Kansas to find the Smith brothers a.k.a. Tate and Levi and their sister Sydney. They find out the only way to stop him is for the three related kids to go with them. Then they run into Casper the friendly ghost (who also goes with them) and Casper’s cousin Spooky who goes with them as well. And when they got there, the villain, as you all know, has released all the villains from Tate’s DVD’s. And when R. L. Stine told Batman to go to the bat cave, Robin went with him. Spooky gave Casper the way to stop the man. Tate went to look for a way to stop him. The man’s plan to take over the world is almost finished. He turned Tate into a dog. Ten minutes later, he turned back to normal. Levi opened all the DVDs and the villains got back into the DVDs and the villains were never seen again. Tate has the power to turn into animals whenever he sees the name of an animal now and Tate pushed the man to his death. The end.

Who knew that cleaning a bedroom could inspire a blog post? If you liked this one then you might like: When a Rock is Not a Stone  and Typewriters and Texts

The Evolution of Autism

In the past twelve years I have heard, “Autism? What’s that?” from more than a few people. And I’ve patiently answered. After all, twelve years ago I had almost no idea what autism is.

Originally, when asked, I quoted a definition of autism that went something like, “Autism is a neurological disorder that limits a person’s ability to communicate and learn from their environment. A person with autism may have trouble with communication and social skills, and they might engage in repetitive behaviors and have limited interests.” Of course, if given the opportunity I would expound on that definition significantly, because offering that general and very broad definition never really painted a very clear picture of who my son was and what his differences were.

Many, many times, I probably left the impression with people that autism is a very big and scary beast. Back then, that is what autism was to me.  

When we first encountered autism it seemed like a powerful villain in a dark movie. It lurked in shadowy corners like a kidnapper who was holding my son hostage, just out of my reach. Autism frightened me like nothing I had ever known. And my definition of autism reflected that. Autism does not intimidate me now like it did back then so I can define it just a little bit differently than I used to.

Ten years ago, autism meant: discrete trials and flashcards, long team meetings, therapists in my living room for hours at a time, and a second mortgage to pay for it all.

Autism was stereotypic behaviors like toe walking, posturing, squealing, and my constant reminders of “calm hands please.”

Autism meant drool bibs and diapers long after peers outgrew them.

Autism was a love affair with vacuum cleaners.

Autism meant memorizing acronyms that everyone around me seemed to already understand without pausing to decipher, always leaving me a sentence behind while I tried to keep up.

Autism meant learning a whole new vocabulary and using words like perseverate and echolalia on a daily basis.

Autism meant owning every character from the Thomas series, so they could be lined up and worshipped, but rarely played with appropriately.

Autism was staying awake for hours at night to make sure Woody’s hat did not come off his head. And autism meant if the crayon from the sacred Blue’s Clues notebook was missing, we searched as long as it took to find it.

Autism turned bath time into a painful battle and haircuts into torture.

Autism was locked doors and the fear of wandering.

Autism meant, “Please. Please. Just take a bite” and “He hasn’t pooped in days.”

Autism was transition warnings, meltdowns, visual schedules, and routines without flexibility. Autism made me hold my breath, always waiting for the other shoe to drop. 

Autism meant anxiety and so many fears. There was the fear of storms. And loud noises. And people in costumes. And dogs. And bats (because there might be one somewhere out there that would swoop down and flap in his hair). And police officers. And other children.

Autism meant I was constantly explaining behaviors and making excuses for the differences.

Autism meant that I dreaded detour signs.

            

That was a lifetime ago, but only yesterday. Somewhere along the journey, as my son has matured and time has passed, how I see autism had changed, It has changed just a little in some ways, but a lot in others.

Perhaps it is sort of like Stockholm syndrome and I now identify with my son’s captor.

Perhaps it is because I have just come to accept what is.

Perhaps it is because all the early intervention helped to eliminate some of the hardest parts of autism.

Perhaps autism has evolved as my son has aged.

Perhaps it is because autism was never really as scary as I thought it was in the first place.

For whatever reason(s) I have grown somewhat complacent with autism.  I do not embrace autism. I do not even like autism. I just do not fear autism anymore.

It was definitely a gradual thing. It did not happen in one defining moment. It’s not that we have slayed the proverbial beast that I perceived autism to be, or even that we have tamed it. Autism is still with us. It still sometimes seems bigger than us. But mostly it is in the background. We used to revolve around autism. It was at the center of everything. But these days,  most days, it lives with us quietly.

These days autism means IEP meetings that go well, and an advocate who is like family to us.

Thomas the train and Blue’s Clues have been forgotten. Now, autism means shelves and shelves overflowing with movies and obsessions about movie personalities.

Autism means Legos.

Autism means that we only get haircuts on Thursdays but they are not traumatic for us.

Autism means a peanut butter sandwich, chips and 3 cookies presented in the same way every day for lunch.

Autism means cheese pizza, lots and lots of cheese pizza.

Autism is literal thinking and explaining the punch line of a joke.

Autism is funny misunderstandings.

Autism means peers who are willing to help and educators who genuinely care about my son.

Perhaps in years to come I will feel differently. It could be that as my son’s peers begin to drive, go off to college, and wed, my vision of the ugly monster will be resurrected. I can imagine as I get older and my son needs a sibling to step into his life as his caregiver, that I will redefine autism once again. But for now, these days, autism is just a quiet part of who our family is.

If you liked this post, you might also like: You may be an autism parent if...

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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Open Road But A Closed Mind

This is an update on a post from April so I reposted that blog entry below, as well.

That road that was closed six months ago?  You know, the detour into town that left Tate unable to breathe normally?  Well, the road is open and has been for almost two weeks.  Am I allowed to drive on it?  Absolutely not without much protest from Tate!  His routine of the past six months is now the new set-in-stone routine. The old route into town, although paved and widened, is now causing him great distress if we use it.  If it’s not one thing it’s another.  I’ve said it before and I’ll say it again:  Routine is everything to a kid with autism. 

Yesterday, Tate left his i-pad at school.  He went into panic mode when we arrived home.  I suggested he use his dad’s i-pad and get his in the morning when he returned to school.  He was beside himself until we got into the car and headed back down to school.  Why?  Because his i-pad belongs by his bed, plugged in to recharge every night when he goes to bed.  Changing the routine would make Tate miserable in a way that most people without autism could not even begin to understand.

Sometimes, we have no idea we are setting a precedent until one has already been set in his mind.  For years we have used an artificial Xmas tree that is stored in the attic.  About four years ago Shawn decided he wanted the kids to have the experience of cutting down a tree so we went to a tree farm.  I can’t remember if Tate protested or not.  Sometimes he looks at a new experience as an adventure and he gets excited.  Sometimes.  But not usually.  Tate has been telling us all week that he wants to put up our tree on Saturday.  Shawn and I are fine with putting up the tree this Saturday but, in the effort to save some money, we told Tate that we would be putting up the artificial tree from the attic.  We were not thinking about how he would take the news and it went badly.  I don’t think he got much sleep last night.  He went to sleep protesting about using the fake tree and he woke up protesting about the fake tree.  He doesn’t have anything against artificial Xmas trees.  He just doesn’t want to alter the routine we have set for getting the Xmas tree.  Sometimes, the drama and pain caused by change are too much for me to watch Tate go through and sometimes I am able to deal with it with less difficulty.  I am often able to think of the routine changes as good therapy for a boy who needs to learn to become more flexible.   

Under Construction  (Repost of entry from April, 2012)

The main road between us and our small town is undergoing some major renovations.  The power company and other utilities have been digging and moving things for months.  We’ve watched the backhoes and other machinery come and go and I have commented to the kids several times about the road into town being widened.  This morning there was a sign up that said “Road closed beginning April 24.”  Tate snapped to attention when he saw that sign and began protesting and asking questions.  You would have thought he was one of the business owners on the strip that have been complaining loudly about losing income while the road is widened. 

I have been dreading the day the road will close because it has the potential to make our daily trek into school stressful for Tate; and, when Tate is stressed, everybody is stressed.  Starting his morning out with a detour will not be easy.

When Tate was really young and we had to take an alternate route to a familiar place he would become anxious and cry sometimes.  He could read at a young age and recognize road signs and he became upset when he saw a detour sign, even on an unfamiliar road.  At first I thought he was bothered by the bright orange color of the detour signs.  He could not verbalize his thoughts or fears to me.  I understand now that many people with autism like to do the same thing, the same way every time.  He associated the word “detour” with “change” or “different” and these things are scary.

Two or three years ago, one of the major roads going the other direction was closed for a couple of months while a new overpass was being built.  We had to use a temporary detour road that was new and built to accommodate traffic through that area.  Tate had a major problem with going on “the new road.”  He would protest and tell me we were going the wrong way.  I explained over and over why we were using the different road for a short time.  We weren’t so dependent on that route so I was able to avoid it most of the time.  After we had used the temporary road for a couple of months he stopped protesting quite so loudly but always commented on it.  I think the new route in to school will be accepted after a couple of weeks because Tate is maturing and learning to be more flexible all the time.  I just wish he didn’t have to deal with the anxiety initially.  I suppose it will get easier all the time.  Tate is also “under construction” just like the road. 

unusual attachments

Tate with his beloved duck named Boris.

One of the signs of autism is an unusual attachment to inanimate objects.  Tate began this at a very young age.  These objects come and go and sometimes come again.  Often, the attachments are video/television related.  One of the first objects I remember Tate attaching himself to was a Blue’s Clues notebook.  He loved the show so I got him a little plastic notebook that came with a crayon.  I had no idea what I had started.  Tate carried the notebook with him everywhere and he slept with it.  If the crayon was separated from the notebook he became inconsolable.  The crayon broke and I replaced it with a similar one but he couldn’t stop thinking about the broken one.  When Tate woke in the mornings, if the notebook was not right beside him, there was panic.  If Tate laid the notebook down and couldn’t remember where he left it, the whole family searched madly until it was found because Tate seemed to be in physical pain.  The notebook became too big of a burden for us to bear.  The Behavior Consultant I have relied on so heavily, advised me to take the notebook away and I threw the notebook out.  We went “cold turkey.”  It took about three days for Tate to accept it but it was gone and our lives became so much easier.  I think if we found a plastic, toy notebook like that today, he’d pick it up and hang on tight.  The pull of the notebook was that strong.  Any small spiral notebook is still very appealing to Tate and I am careful to watch for the obsession to begin.  I make those little notebooks disappear if I see an attachment forming.  I’ve hidden and discarded many over the years.

There have been numerous attachments to objects since that first notebook.  Toy Story toys were very appealing to Tate and he was very attached to a Woody doll for a while.  The doll became a real problem because Tate wanted the hat to stay on the doll’s head at all times.  Tate couldn’t sleep much at night for a while because every time he laid the doll down, the hat would come off its head.  Tate wanted Woody next to him on his pillow (with the hat on) but the hat couldn’t stay on in that position.  Tate would stay awake, to hold the hat on Woody’s head.  I finally had to take Woody away at night and make a rule that Woody could not “sleep” in Tate’s room.  That took days for him to accept.  When we saw Toy Story 3, we were in the theater.  There is a scene in the movie and Woody actually loses his hat for a while.  When Woody lost his hat, I thought “Oh no!  This is going to be a problem.”  It was.  I was empathetic as Tate stopped enjoying the movie and worried about Woody without his hat.  I feared Woody would go on to do Toy Story 4 hatless and leave me with a miserable little boy for years to come, but Woody recovered his hat so Tate and I were spared.       

In that same Toy Story sequel, Buzz spoke in Spanish and Tate became very insistent that his own Buzz should be able to speak Spanish.  He couldn’t let it go.  These kinds of thing become so important to him that he thinks of little else.  If I had been able to find a Buzz that spoke Spanish I probably would have bought it for him.  Most of Tate’s toys do not become obsessions.  Most of Tate’s toys are rarely played with at all.  He likes toys but he likes them to sit on a shelf so he can admire them.   Tate likes to organize his toys into groups.  Some of the groupings make sense to me but some do not.  His cars might all be in a box together but his Star Wars toys might be mixed in with other boxes of toys he “organizes.”  If I try to rearrange things it bothers him and he will often “fix” the “mess” I make when I try to organize.  Tate thinks in this same “unorganized organization” as well.  Temple Grandin explains it well in one of her books.  One memory or thought triggers another and soon Tate is thinking about something that is totally unrelated to the topic at hand.  Because the movies and videos are so appealing to Tate, most of his thoughts come back to a movie scene or character.  This kind of unorganized thinking makes it very hard for Tate to learn.  This is why Tate cannot learn from lectures.  Besides getting lost in all the language that he cannot process quickly enough, he is distracted by all his own thoughts.    

Sometimes Tate becomes attached to things other than toys.  Getting new shoes was something I always dreaded when Tate was younger.  He would carry around the old ones, while he wore the new ones.  He had to “mourn” the loss for a day or two.  Trading our Suburban for a van a few years back was pretty hard on Tate.  Getting new bedroom furniture was a very hard thing.  Tate has blankets and pillow cases that have become very important to him as well.  He has the "pet" rock named Rocky that has been very important to him.  Sometimes Rocky is a big part of our life and then we don’t see him again for a while but he always seems to resurface.  Tate has had attachments to sunglasses before and that attachment had to be nixed.  He wanted to wear the sunglasses, even inside, so it was hard for Tate to see.  One of the longest attachments Tate has ever had is to his watch and his hat.  Tate cannot tell time but he loves his watch.  He couldn’t buckle a watchband for a long time so I found a Velcro band.  The watch even quit working and Tate still wore it.  However, a few months back, he traded it for a new watch, with a strap that buckles and he learned to buckle it.  I was shocked he would even consider a new watch but he did.  There was a time when trading his old watch for a new one would have caused days of anguish.  Tate is so attached to his hat that some people have never seen him without it on.  Hats have always had a tremendous pull for Tate.  He had a fedora he loved when he was little but it was not age appropriate so we hid that one and he chose to wear a black news-boy hat.  Tate wore it until it was falling apart.  Each time a hat becomes worn or stinky, and it is time to trade for a new hat, I warn Tate for a few days prior.  When we actually trade, it can be very stressful for a few days afterward.  It is much like a small child giving up a blanket or a pacifier.   

The last time we went hat shopping, Tate chose a ball cap with a Jayhawk on the front. It was the smoothest transition we have had yet.  I told him to pick two so he could have an extra.  I expected him to pick two exactly alike.  I told him he could do that so the next trade would not really be a trade at all.  But he chose two different hats with a Jayhawk on each.  Once in a while, I bring out the second hat and remind him we have it.  Hopefully, the next trade with go as well as the last.  He is really making some progress. 

If you liked this post here is it's "sequel" Shoes

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