Ten random things that you may not know about me:

Number One:  I have written Bible class material that is being used in Churches of Christ all over the nation and in some foreign countries.  I’ve also been told some homeschoolers are using it.  I enjoy writing and wish I had a lot more time to commit to it.  I don’t get paid to do it but it helps me to feel like I am obeying the great commission in a small way.  I especially like writing for preschoolers but have written several series for elementary school ages.  The material is published by Hanna Publications and is all reproducible and inexpensive.  

Number Two: Before I knew Tate had autism, I was afraid of people with disabilities.  I would never have approached a person with a disability in hopes of having a conversation.  I would have walked out of my way to avoid a person with a disability.  Now, I often go out of my way to have interactions with people who have disabilities.  This is one of the reasons I believe God blessed me with Tate.  I had lived most of my life as a selfish person and I needed to change a lot of things. 

Number Three: I cannot recognize the faces of new people I meet until I have seen them several times.  Also, when I see people out of the environment that I usually see them in, I have a very hard time placing them.  Being a preacher’s wife, I meet a lot of new people so this handicap is huge.  I cringe at the thought of how many people I have snubbed over the years, especially the ones that visited our congregation one week and saw me in the grocery store the next.  It would seem to the ones that I have accidentally snubbed that I am a very rude person.  This inability to recognize people is very frustrating to me and to Shawn.  He often has to explain to me who someone is and how I should know them.  I have tried very hard to memorize a face when I meet a new person but I just cannot do it.  I can sometimes remember a person after only one meeting IF they have something very unusual about themselves (like their size, a different kind of haircut, a tattoo….)  So many people look just alike to me.  I can sometimes remember a person by their voice before I can recognize their face.  I know a lot of people claim to be "bad with faces" but the problem I have is much more than that.  Tate struggles with this also and I know it is a characteristic of autism.  I have several characteristics of autism, although not enough to have an ASD diagnosis.  Relatives of those with autism, often have many of the characteristics of autism.  

Number Four:  I am a visual thinker.  I think in pictures.  One of the first books I ever read about autism was written by Temple Grandin, and is called “Thinking In Pictures.”  Temple is an adult with autism.  She thinks in pictures and likens her thought process to a roll-o-dex or flashes of videotape.  I was reading her book and had an “ah ha moment” when I turned to Shawn and told him I thought everyone thought “in pictures.”  He had no idea what I was talking about.  I have asked many people since then.  Apparently, few people think in pictures.  Because I am a visual thinker and think it pictures, it is doubly hard for me to understand why I do NOT recognize people’s faces until I have seen them several times. 

Number Five:  I have trouble following directions unless they are written down.  This is related to being a visual thinker.  When someone is giving me multi-stepped directions, I stop listening after the first two steps because I know I won’t retain any of it at all if I try.  I figure if I tune out everything after the first couple of steps, then I will retain the first two steps at least, and get two steps closer to the goal before I have to ask for directions again.  I have a son with Attention Deficit Disorder and this is how he has to operate.  My poor kids didn’t stand a chance with genes like mine.  Ha!  

Number Six:  I love my kids and I love spending time with my kids, so-much-so that it is hard for me to let them go to school eight hours a day, nine months of the year.  THAT, you may already know.  THIS is what I found remarkable:  I did not have any problems letting my children leave home for college.  I practically celebrated their departure.  Well, until this past fall, when I had three leave at the same time and one hadn’t even been home for more than a few days all summer.

Number Seven: The hardest role I’ve ever played is not daughter, sister, wife, employee, friend, mother, or even preacher’s wife.  The hardest role I’ve ever played is that of a daughter-in-law.  No one could ask for a better mother-in-law and example than I have but being a daughter-in-law and sharing the same man with another woman has been a super-challenging thing for me.  I’m really, really bad at it.  REALLY bad at it.  I cannot think of anything I have ever prayed as much about, worked harder to get better at, or worried as much over.  So… I always figured that being a mother-in-law would be equally as challenging for me.  It is not.  It is very easy for me to share my son with his wife and I’ve come to love my daughter-in-law like she is my own daughter.  My son being gone for holidays does not make me the slightest bit jealous or sad.  I’m just happy about who he is with.  Period.  I did not think it would be this easy.

Number Eight:  Almost every time I use a sharp knife I injure myself so I don’t keep any sharp knives in the house.  People are always telling me that a dull knife is more dangerous, but I have never cut myself with a dull knife.  No one else likes my knives but I sure do!

Number Nine:  It is totally out of character for me to watch and enjoy scary movies, read scary books, or listen to scary stories.  However, my favorite show on television right now is “The Walking Dead.”  I wish there was a new episode on every night of the week.  I just love it and none of my family can believe it.  It is so unlike me.  Don’t worry.  I am very careful to make sure my little ones do not see it.

Number Ten:  I set a goal when I was about eight years old to someday own a pool.  My parents did not allow us to participate in public swimming due to modesty issues. We have raised our children with the same rules.  The only time I was ever able to swim was at Bible camp where girls and boys swam separately.  Two summers ago we bought a thirty-foot, aboveground pool.  Of all the physical possessions (material blessings) I have ever been able to enjoy, the pool is probably number one on my list.  I even enjoy cleaning it! 

Spiral Notebooks, Old and New

Most of this post is a repost from eighteen months ago.  I updated it today.

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, 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 Jayhawks on them.  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. 

Update: I wrote the above post a year and a half ago.  The original was entitled "Unusual Attachments."  I remembered it today because I did a really dumb thing.  I bought Tate a spiral notebook.  Obviously, I do not learn from past experiences.  I found some really neat colorful spiral notebooks on clearance a few days ago and gave Tate and Sydney each one.  When you use the special pen the notebooks came with, the paper changes colors.  I thought it would be a neat thing for Tate and Sydney to have and that maybe I could talk them into trying to take some notes during the sermons on Sunday.  I had totally forgotten that it might be a problem because I'd not seen Tate with a spiral notebook in a very long time.  How could I have forgotten?  He carried that notebook around all day.  He wouldn't put it down during worship to pick up a hymn book until I insisted.  Here we go again.  Three steps forward and two steps back.  This time, I can take the credit.  Ha!

Trials Produce Patience

This morning, I was vacuuming my bedroom and Sydney was begging me for a turn. (Why do kids love the vacuum until they are actually old enough to use one effectively?) I gave her the hose to go around the baseboards and reach under the bed. One of my nicest shirts was lying on my dresser, waiting for a turn in the washing machine. She managed to vacuum up half the shirt before I could grab it. She loved using the vacuum and giggled for most of the time she was dragging it around. I wish I loved the vacuum enough to giggle while I used it! Ha. 

The above took place right after I got Sydney out of the bath and had to clean up the gallon of water she had sloshed over the side of the tub. She also emptied most of a bottle of shampoo into the tub so she could have bubbles. She knows better! However, the bath was before her meds had slowed her down and calmed her, giving her a little bit of self-control. I love it when Sydney wants a bath in the early mornings because then she is “contained” for that 30 or 40 minute period it takes for her meds to kick in. So…. while this morning, I had to use an extra towel to clean up water, and the shampoo is gone, there are no spilled foods, dumped toy boxes, brothers complaining of torture, and nothing is broken. I’ll put shampoo on my grocery list and call it a successful Saturday morning.   

If you haven’t read it before, I have a post called Saturday Mornings With Sydney from December 2012 describing a typical Saturday morning here at the Smith house. Saturdays, during the school year, are the hardest because it is the day with the least routine. 

Sydney causes me more work in one day than any kid I've ever known but I love her with all my heart. When she was very young and I did not yet understand she had a disability, I was pretty hard on Sydney and REALLY hard on myself. All my other kids have conformed to rules and been easy to train. Sydney was like no child I’d ever been around. I have come to understand that "she is who she is" and she cannot help it. She will never "catch up" to her peers. Ever. The alcohol she was exposed to in the womb did damage that I cannot undo. There are helps available: like medications, physical boundaries, and visual reminders. We use them all.  

Sydney's behaviors do become more manageable with each passing year due to some maturity, but she will probably never be able to control all of her impulses. Of course, she won’t still be dumping shampoo in the bath when she is in high school but what will she be doing instead? It’s a scary thought. I won’t always be able to clean up "the messes" she makes when she is an adult, but for now I try to do it with a smile on my face. I memorized a Bible verse that has been helping me a lot. It comes from James chapter one: “My brethren, count it all joy when you fall into various trials, knowing that the trying of your faith produces patience. And let patience have its perfect work that you may be perfect and complete, lacking nothing.” Don’t misunderstand. I do not think of Sydney as a trial or a burden! I think of her as a blessing and a teacher! I do see the FAS and Sydney’s lack of self-control as a burden to both myself and to her. And, just as God promised, I am learning patience and growing closer to Him!

Notes from Tate: Part Two of Three Steps Forward and Two Steps Back

STOP! If you haven't read the last post (yesterday's post) then this one will not mean much. So click on the purple link, read it, and catch up! Thanks for joining in my "fun" with autism.

We are one day into the elimination of fantasies and Tate is doing very well. He is past crying and seems to be okay. He is not verbally arguing but still he seems to have gotten the last word. Ha!

In the past, on occasion, when Tate feels the need to argue with an adult but knows he will be stopped, he has written notes. The first note I ever remember him writing was around third grade and he was upset with a teacher. He wrote her a note to continue an argument that she thought she had won. He’s been writing notes ever since. Not all of them get delivered but it may be a good release for him. I’ve written my fair share of notes to school board members and various others that I never sent. Now I blog for therapy. Ha!

Last year, Tate wrote a couple of notes to his well-loved para to fire him from his position because he was asking Tate to do things that Tate did not think were “worthy” of him. Things like reading and math. Ha! We explained that students cannot fire school staff and then went around the corner and laughed hard. Three steps forward: Tate is initiating interactions with others, trying to advocate for himself, and using communication skills that are really hard for him. Two steps back: Tate is unable to “drop” the “argument” that he lost and is sometimes, boarder-line, disrespectful, both typical of autism.

Following is a note Tate wrote to his Dad regarding the babysitting service he wants to open based on a television show scenario. It was in a folder at school and the para sent it home so we could see it. We’re not sure when he wrote it.

Dear DaD I thank I will Be a GOOD BaBY SiTer  The BilDing Will Be a wonDerful Place and I canT waTe To Be a Bother [brother] and Manager  We Will have Dinner every Day aT 4:00  I We will come and viste you MosT oF The TiMe  Winever the Kids GeT sik I will TaKe them To The DoTer and Me and SiDNey Will Go To the Computer every Day at 5:00  I will NoT Give UP intell This New Year’s Day From TaTe  PS I will aso BaBYSit NaNs KiDS and The aParTMenT Will Be for KiDS and animals Who Need a BaBYSiTer only

The reference to being a brother and a manager is from an unrelated joke we have also been trying to eliminate (also from a television show.) The joke is never delivered in a context that is understandable to his “audience” and only makes Tate appear very odd. I have been trying to extinguish this one for two or three weeks and Shawn addressed it when he spoke to Tate about the inappropriate fantasies and stories he has been telling people. 

Three steps forward and two steps back.

Three Steps Forward and Two Steps Back

Three steps forward and two steps back: My life is a version of hhe bunny-hop.  We make a little progress and then have a set-back.

This week has been a hard one. I’m not good at tough-love, especially with my two youngest. It has always been hard for me not to spoil my kids and sometimes I have had to undo damage that I have inflicted, but it seems doubly hard for me not to give the two youngest what they want. What they want is not always what they need though and that is where the tough-love comes in. Tate and Sydney have to do without so much in their world that I cannot always give them: regular friendships, the ability to understand social relationships, a grade-level understanding of academics, age appropriate motor skills, the ability to communicate what they are thinking or feeling, and much more. So, when there are things that I CAN give them, things they want, I tend to bend over backward to make those things happen. Saying “no” to them is hard for me. 

It has been a long time since I’ve left Tate at school crying. He used to cry almost every morning before school but that was before we had the kind of IEP team we have now. I had forgotten how hard it is to walk away from the young man that has custody of my heart when he was sobbing. This morning I left him, wiping tears, with his shoulders shaking.  I told myself it was no big deal. I had a talk with myself about toughening up and the “big picture.” I got a block from school and burst into my own tears. I wanted to turn around, run back into the building, tell him that everything that led up to the tears was a mistake, and we could let him have it all his way. But his way, is not the best way and his way will just handicap him further. 

There is a behavior stereotypic of autism called echolalia. It just means echoing or parroting words or phrases. Tate used to echo movie phrases or book passages a lot. He also used to echo the last word of every sentence he spoke. He often did that in a whisper. It was pretty creepy sometimes and it was one of the first behaviors we eliminated when he was diagnosed with autism. I worked hard to rid us of that behavior by constantly telling him not to repeat, or “No whispering.” If I had a dollar for every time I said, “No whispering” I could probably buy a new car. I always said it with a smile on my face because I never wanted Tate to think he was in trouble or doing something naughty. A child with autism cannot help the fact that they have stereotypic behaviors (stims.) A stim often looks like a behavior you would see with Obsessive Compulsive Disorder. Stims can be redirected and eliminated sometimes but are often replaced with other behaviors that are even worse than the original behavior. We try to eliminate the worst stims we see and live with the milder ones.   

Occasionally when Tate is stressed he can still be heard whispering the last word or sometimes the last sentence he spoke but he doesn’t do it often. We don’t hear the movie dialogue like we used to either, but he has taken it to another level. He tells bits from sitcom stories as if they really happened to him. This is where our problem today began. Tate’s favorite shows are shows on the Disney channel: “Sam and Kat,” “Jessie,” “i-Carly” and “Good Luck Charlie.” Tate has taken scenes or jokes from the shows and built stories around them to tell to anyone that will listen. His latest story is that he will start a babysitting service in his apartment building (we actually live in a house) and he will “change them, feed them, burp them” as well as have a website for Tate’s babysitting service dot com. I have heard this over and over for days. Before that, he was going to be in a play on the high school stage and he was inviting people to it. I actually had people stopping me and asking what Tate’s play was going to be about. He loved the attention. It didn’t matter to him that it was all fantasy and he couldn’t really “deliver” a play.

This is a fairly new thing. Three steps forward:  Tate is seeking attention from others. Tate is communicating. Tate is pretending. All these things are things we WANT to see when a kid has autism. 

I didn’t know what to do about this new behavior. At first I listened and gave him an audience. I tried to help him with writing a script for his play. He was not interested, nor does he really have the ability to plan or write a play, even with help. So then I tried talking to Tate about it, explaining that he was pretending and he couldn’t continue to talk to people about all the pretend things. I told him it was not appropriate and it was confusing to people. He did seem to make an effort to hide it from me and only talk to people about his fantasies when I was not standing right beside him. So then I tried asking him nicely to stop. It stopped at home but not at school or in the community. 

Two steps back:  The fantasy talk has become a real problem. He is interrupting teachers, dominating conversations with peers, and causing awkward moments because people do not know how to respond. Soon, I fear he will be alienating people from his world who used to enjoy his company.  

So, what’s a mom to do? Tell the dad to take care of the problem, of course! Shawn is a very involved dad. Tate recognizes that Mom is a softer place to fall than Dad and Dad is the authority figure in our home. Dad had not yet addressed the “problem” although he knew it was becoming an issue. Last evening Dad initiated the tough-love I asked him to. He had a serious talk with Tate. Shawn did not frown, did not raise his voice, and did not try to intimidate Tate in anyway, but the message was clear:  the pretend babysitting service and all the other fantasies have to stop. There will be no more conversations based on those things. This morning I reminded Tate that he could start conversations with his friends and teachers about a lot of things. He could talk about his pets, his Halloween costume, or even a show he liked to watch, but he was not to talk about having a babysitting service or anything else that was not true. He seemed okay. He stimmed a little, but not a lot. We walked into the school, I greeted his Para and Tate choked. Then he began to sob.  He rarely cries. Seriously, I think he has gone a whole year before without crying. In Tate’s world, crying is big. In Tate’s world, crying is huge. Oh how I wish he was still two years old and I could make everything better. When Tate was two I still didn’t know what autism was. I still didn’t know our world would be turned upside down by a disorder I didn’t recognize. In my mind I still had six “normal” kids. Until you hear the words, “Your little boy has autism” I’m not sure you could understand how badly I would like to turn back the clock. Ignorance was bliss.

I’ve read a lot of books about autism. A. Lot. Of. Books. Some of the most helpful books I have read, were written by adults with autism. Temple Grandin is a favorite author of mine, and Sean Barron is another. Sean tells of being a young man and being very interested in television. He also was interested in having friends but had no idea how to make a friend or how to communicate. He didn’t know what was socially acceptable and what was not. He knew that the cartoons and sitcoms he watched got a lot of laughs from people so he began to memorize lines from the shows and he would deliver them to his school mates. Because the scripted lines were not set up properly and were out of context, Sean would get no laughter. He couldn’t figure out why and it left him angry and confused. I often think about this when Tate is trying to tell a joke he heard on television or is quoting movie lines. Is it the same for him? Is it different? Will he ever be able to tell me? 

We move forward in other ways, only to fall back. For years I have tried to interest Tate in participating during worship services. He has been singing for years but zones out for the rest of the service. I have tried to get him to hold a songbook while he sings but he has complained that it was too heavy and he couldn’t look up the numbers because it was too hard. I have made some huge headway with him lately. Three steps forward:  Tate has learned to follow along and keep his place while we sing hymns. He understands how the stanzas work and the chorus repeats. Most recently, he began looking up the numbers by himself, rarely needing help to find a hymn!  He has even begun to pick up his book without me reminding him. Two steps back: Holding that “heavy” hymnbook has brought back a stim that we broke him of many, many years ago: fanning the corners of a book. I’m not talking about fanning the corners for a second and putting the book away. I’m talking about becoming LOST in the movement of the pages as they fan across his thumb. His whole focus is absorbed into the corners of that book and it could keep his attention for twenty minutes easily. No big deal if he only does it during worship? No! It has the potential to consume him at home and with every book he can get his hands on. So, after we sing, I take the book, put it back in the rack and tell him he is not allowed to touch it again until it is time to sing. What’s the big deal? Do you know how many books there are in this world I will have to keep an eye on now? Ha! Honestly, I feel like I can hear the music playing now. The tune is “The Bunny Hop.”   
There is a follow up to this story here: Part Two