Thursday, July 31, 2014

It's Not Such A Bad Life

The day I realized Tate had autism, and for a plethora of days after, I was dazed and distraught. Tate got an official diagnosis well before the age of three. We had decided to use the researched based therapy called Applied Behavior Analysis (ABA) before we even had the diagnosis and we had already begun our in-home therapy with a certified behavior analysis. The books I read said we had a window of time, a fairly small window of time, in which to help Tate. I was frantic. I could not get therapies in place fast enough. I wanted everything done RIGHT NOW! I needed to focus. I forced myself to calm down, get organized, and get busy. I was up most nights reading about how to teach Tate and then trying to implement the best strategies all day long. Every waking minute needed to be an educational one for Tate. There should be no down time because he used down time to stim. I was exhausted. I saw time slipping away and I felt like I was moving in slow motion. I was literally in panic mode. Why would nobody DO SOMETHING?! Couldn’t everyone understand how urgent it was that they help me save my baby and his future? We not only had to teach him to do things he had never learned to do on his own, we had to reteach him how to do the things he had stopped doing and we were in a race against time. I kept reading how elastic and malleable a child’s brain is until about the age of seven or eight. After that, we would the progress would stall, according to the books I read.* So, I pushed and pulled, kicked and screamed, made phone call after phone call, and appointment after appointment, trying to put all of the people and plans in place that could help us to help Tate gain and regain what he did not have. He had lost so much language and so much of his personality. He was afraid of ridiculous things, including other children. He could not pretend or play with toys appropriately. He could not communicate effectively. He spent a lot of time lost in stereotypic self-stimulatory behavior.

Before the very first therapist showed up to see Tate in our home, I had successfully eliminated some of the stereotypic behaviors like the hand flapping. But, as fast as one behavior was extinguished, another would replace it. I targeted behaviors one at a time. Sometimes the replacement behavior was worse than the one I had eliminated, although none were ever as awful looking to me as the hand flapping. I had to be creative. Tate loved to look at his reflection. He would stand in front of the blank television screen or the oven and turn his head, watching his reflection with peripheral vision. I put a fitted sheet over the front of the television and hung a big towel over the oven door to keep him from spending long periods of time engaged in this. Tate liked to run without purpose. That means he would run back and forth through a room, but only for the repetitiveness of it, not because he was pretending or playing purposefully. I blocked his paths. Tate loved thick books so he could fan the pages over and over. I put all the books except his picture books up higher than he could reach. Tate liked to push the buttons of toys, to hear the same song or noise repeatedly. I took the batteries out of those toys.
Tate at Preschool, age 3
Those first months of working so hard are sort of a blur. Even after we enrolled Tate in the early childhood autism program through the University of Kansas (KU), I was still exhausted. I’d never worked harder at anything in my life than I did trying to bring Tate back from the autism that stole him from me. When Tate aged out of the programs KU had to offer and entered public school I found I would have to wear yet another hat (boxing gloves might be a better illustration.) I had to learn how to fight and argue and scrap with the public school district. Not everyone who was to be involved with Tate’s Individualized Educational Program (IEP) was educated about autism, cooperative, and friendly. We fought for four long years, with very little progress made compared to the years before those and the years since. 

We saw a tremendous amount of growth academically the year Tate was in fourth grade and he has done well every year since. Tate recently began seventh grade. Things are going so well now that I can sometimes almost forget about those awful four years of primary school. I can also go days at a time now without remembering the day that I learned what autism is. Back then, when I was working so hard with a preschooler that could barely talk, and again later, when I had to fight the public school for services, no one would have been able to convince me that someday I would say, “It’s not such a bad life.” But, now I can easily say it. I can say it now BECAUSE of all the early intervention we did back then. I can say it BECAUSE of all the fights I won to get Tate the services he needed. Today we reap all the benefits of the things we did back then. Tate is only 12 and the work is not over but it is so much easier now.

It’s not such a bad life. I’m not sure I will always be able to say it. Perhaps we will have bad things happen again in our future. But for now I can say it. I really can say, “It’s not such a bad life.” Wait for it.... I can even go as far as saying, "It is a really good life!" Autism is what Tate has but autism does not keep us from loving or laughing. It does not keep us from going and doing. We are blessed. We have a good life, autism and all. A similar post: What did I do to deserve this?

*I do not believe now that we ever saw a huge change in the rate at which Tate learned after age seven or eight like I kept reading. Tate continues to make gains. 

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Friday, July 25, 2014

I still get the recommended immunizations for my son with autism.

I got a letter this summer from Tate’s school telling me he needed to have a Tdap (Tetanus) shot before school resumed in the Fall. Last week I took Tate to get the shot. Before you gasp in horror because a mother of a kid with autism is still getting their child immunized, let me assure you that I have carefully considered the risks involved. I think most mothers who read all the fine print on the paperwork involved in getting their children’s immunizations, want to grab up their children and run out of the office without the shots, including the mothers that do not have children with autism. However, if we all did that, even if a small percentage of us did that, then the diseases that had been eradicated by childhood immunizations would become common amongst us again. I have been hearing that some of those diseases are actually on the rise because moms are refusing to immunize their children. 

I did not tell Tate about the needed shot until we were ready to get into the van. You see, had I told Tate about the shot the hour before, the day before, the week before, the month before, he would have become sick with anxiety and our whole family would have suffered the whole time. We were going to see the latest Disney movie that was just released that day. Yes, we have to go the day of the release to avoid a huge amount of stress as well. So, being the calculating and conniving mother than I am, I scheduled the doctor appointment for ninety minutes before the movie time. I am no idiot though. I made sure there were other movie times available if our doctor appointment did not go as scheduled or planned. I told Tate that we would be visiting the doctor’s office before the movie so he could get a needed physical and a shot. He was very nervous but did not meltdown. I think the anticipation of the movie was definitely in my favor.

The pediatrician that Tate has seen for years has recently retired. We went “potluck” at the practice and met a new doctor. I had no idea when we made the appointment, but he is the son-in-law of our beloved pediatrician who just retired! This guy is a keeper for sure. He was great with Tate. He spent a long time talking to Tate on his level and listening to Tate’s long discourse on the movie we were about to attend. Tate talked so much to that doctor that I actually said to the man, “He just said more to you than I will hear in a whole day sometimes.” Tate does that when he is nervous or excited sometimes. He becomes a motor mouth. If he would talk about something other than a movie when he had these language events, I would…. Well, I don’t know what I would do. I would definitely be happy. I watched and listened to every word Tate said to the doctor. I think he talked at least five minutes, probably longer, and the doctor patiently listened, looking at Tate. Tate looked at the floor. He looked at the wall. He looked out the window. He never once looked at the doctor. When the doctor left the room I told Tate how proud I was of him for all the language he used. Then I gently reminded him to look at people when he talks to them. We go over this often. I know it is so hard for him and every other person with autism to make the eye contact but I still keep hammering away at it.

The doctor gave Tate a physical and was very patient and gentle as Tate squirmed and flinched. (Tate hates for his skin to be touched, especially his belly. See post: "Don't Touch My Skin") The doctor suggested that we also get immunizations for Meningitis and Hepatitis A. He explained what each shot would protect against. He seemed just a bit defensive to me when he recommended the additional immunizations. I told him that I was unlike a lot of autism moms and I did not believe that immunizations had anything to do with Tate’s autism diagnosis. I had seen the “differences” in Tate at birth that I would later learn was autism. The doctor seemed somewhat relieved and we talked about some of the early signs of autism I saw in Tate. I agreed to get all three shots while we were there. I do not believe that immunizations caused Tate's autism, but I do believe immunizations will keep him from becoming ill with terrible diseases if he is exposed to them. 

The doctor warned me that one of the shots was somewhat painful, compared to the others. The nurse who gave the shots was fast and efficient. The first shot barely caused Tate to flinch. The second must have hurt a little more as he jerked a bit. The third must have hurt very much as he hollered out. He did amazingly well. When he is really scared (and this usually happens at doctor offices or dentists) he says, “I love you, Mom” over and over and we have a sort of routine. I put my forehead on his or my cheek to his cheek and he leans into me as I try to keep his eyes off the scary object(s) in the room. I’m sure we make quite a sight, my 6’2” man-child and I, as we awkwardly share our affection for each other. As awful as it is to say: while my heart melts because of his distress, I always relish the short amount of time he needs me to comfort him. I love him so very much and he seldom has needed me to connect with him like this in years. When he was a toddler and even a preschooler he still looked to me for comfort but in the years since he has turned to his self-stimulatory behaviors to calm himself. Pacing on his toes, twiddling his fingers, stiffening his arms, do for him what I cannot usually do.

I can never visit the pediatricians’ office without remembering the day I took two-year-old Tate in and sat him down on the rug in the little patient room. I looked the pediatrician in the eye, said, “There is something wrong with my baby” and burst into tears. That doctor handed me a tissue, watched Tate play for a while, and asked me what I thought was wrong. I said, “I think he has autism.” He replied, “I think you are right.” Before I left that office I had the names of several people I needed to call to begin the early intervention that would help us so much, the early intervention that would help me wage a war against the aloofness that had taken my little boy’s personality hostage. I remember almost every detail of that day. I love him just as much at 6’2” as I did that day so many years ago.


...And Now

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Wednesday, July 23, 2014

"Don't Touch My Skin"

So many people with autism do not like to be touched. Before I really knew what autism was I had heard that people with autism feel things differently than the rest of us. I had heard that a gentle touch might hurt like a burn or a soft touch might feel very rough. This may be true for some but I am not sure that would be the right description for how Tate feels when he is touched. And, yes. He hates to be touched.

When Tate was very young he did not seem to have an aversion to being held, touched, or cuddled for the most part. He seemed to enjoy it like my other babies had. But he did not like to be caressed. He got upset and would stiffen and fuss if I ever tried to rub his back or his neck. I thought that was odd because my other children loved to have their backs rubbed and always had. So, as hard as it was I tried to remember. He often let me know when I forgot.

Now that Tate is older and can talk, he can sometimes put his discomfort into words that I can understand. He has a lot of trouble with meaningful conversation so he does not go into long explanations but he can give me a little insight on occasion. I think Tate was about eight or nine, when he began to say, “Don’t touch my skin” as he pulled away from my hugs. It seems to be the skin-to-skin contact that bothers him. If there is fabric between us he is more tolerant of touching. But even then he seems a little nervous, like he is afraid our skin might touch if he is not careful. He still says, “Don’t touch my skin” fairly often when I touch him. He doesn’t melt down or run away screaming; And I don’t think he is actually in pain but I do think it is uncomfortable for him. I can only imagine because I do not have all the sensory issues he deals with, but I think I can liken it to being “creeped out” by something that we might think is gross. He has an aversion to being touched by another person’s skin like one of us might have to touching a slimey slug or something really unappealing. I don’t know why, but it is what it is. I, myself, have always had an aversion to touching crushed velvet or velour. If I had to sleep under a blanket of either of those fabrics I would be pretty miserable. If I had to wear clothing made of either of those fabrics I would probably not get anything done all day while I sat and tried not to move. Ha. So, maybe I DO have an idea of what Tate is dealing with! I know a girl who hates to touch raw meat. It is really hard for her to cook sometimes for this reason. I have no aversion to touching raw meat but I sort of “get” what she means when she talks about how creepy it is for her.

Tate does not like to touch animals either. I am no expert on sensory issues, and I could be very wrong about this, but I don’t think that Tate’s issues with skin-to-skin contact are exactly the same as his issues with touching animals. I can almost see a shudder if I rub Tate’s back or touch his neck. I do not see the same shudder when an animal touches him. Oh, he hates it. He hates it a lot if a cat rubs up against him or if we ask him to touch a dog. He reaches out two fingers and barely touches the animal, ready to jerk his hand back quickly. I believe the issue Tate has with animals is more from the unpredictability of the animal. He cannot guess what the animal is going to do and surprises are frightening to a person with autism. As fate would have it, our animals are very attracted to Tate. Poor guy! Ha.

I asked Tate this evening if he wanted to hold our new puppy, fully knowing the answer I would get. Then I asked him why he did not like to touch animals, trying to gain some more insight. He said, “You know, animals can attack you.” I laughed and told him that the puppy was just a baby and wouldn’t attack anyone. He smiled and said, “I just don’t want him to bother me.” He has shown a little bit of interest in the puppy from afar and I’ve been pretty excited about that baby step.

So. Do I live my life carefully trying to avoid touching Tate? NO WAY! I am sympathetic and always watchful that we do not push him harder than he can stand, but affection is very important and he has to suffer through lots of hugs.
Tate, age 12

There is a four-year-old boy at the congregation where we worship. He (like our cats and dog… Haha) is drawn to Tate. The little guy wraps himself around Tate’s legs and hugs him at almost every church service. It is the cutest thing. His family has asked me repeatedly if they should try to stop him. My answer is always the same, “No! It is great therapy!” Lately, Tate gets out of the van to enter the church building saying, “That kid will NOT hug me this time!” The cool thing is: he has a smile on his face when he says it! See? The free therapy is paying off! Bring on the hugs.

Here is another post about the way Tate feels things: Does it hurt?

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Tuesday, July 22, 2014

The Photos from Tate's Camera

Tate takes a lot of pictures of his iPad screen or the television screen while he watches TV and dozens of those pictures were on his camera. I did not put any of those up but here are some of his others. Sometimes I think he actually has an pretty good idea of what makes a good picture too. I think I will update this from time to time and add the best of the best.  While you look at the photos look for all the lines and symmetry. Remember how kids with autism like to line things up and keep things in order. That is one of the things that amazes me about Tate's pictures. The theme seems to be ORDER much of the time. 

A Chilli's menu.... just because.

One of the first photos Tate ever took of something other than 
a television screen. I absolutely love it! 

When we eat Chinese food we take Tate's meal in with us. He doesn't like anything in the place EXCEPT the water. He always says, "They serve great water."

One of the only candies Tate will eat. No loves them.
No surprises with this photo. 

The beloved bike he learned to ride, June 2014

One of the first photos I remember Tate taking on his camera 
the summer of 2014. I questioned him, "Why do you want 
a photo of the grocery cart?" 
He didn't have an answer but he was insistent. 

Our Sienna Toyota Van in the garage

In Topeka, KS on a day trip.

His selfie. He usually looks really scared in his selfies. 

I was honored, as usually he does not take pictures of people. 

Notice in the next three photos, all the patterns and lines and how things are "lined up."  They show order and that makes so much sense to me, knowing Tate and what autism is. These three photos were taken on a shopping trip in a mall in Topeka, Kansas. 

A bridge in Tennessee. Tate took this picture when he was in the 4th grade.

The same bridge in Tennessee. Tate LOVES bridges.
The following are posts from our trip to New York City and Connecticut. While I was busy taking photos of landmarks and the sights, Tate was taking pictures too. They are nothing like mine, of course. 

Tate thought a couch that turned into a bed was AMAZING and he was pretty excited about sleeping in it. We were in Connecticut. 

 This was out the window of the rental car in Connecticut. 

Above is a picture of Tate's beloved DVD player and Sydney's mittens. 
I have no idea why he thought it was worthy of a picture but he did. 

And here we have the rental car and Levi's backside. Tate was very 
impressed with it-- the rental car, not Levi's backside. ha

We went to a museum and had a great day.
We forgot Tate's camera and I offered to let him use my phone
several times if he wanted to take any pictures.
He finally asked if he could take a picture. Of a sign.
Not of anything we saw in the museum. But outside
the museum. Of a road sign. He really liked it. HA

I would have thought this picture was an accident except I
watched Tate aim and snap the photo. I asked him about it
and he said he wanted a picture of that grass. Okay then....
We took a day trip to Wamego, Kansas. June, 2015
Tate liked the fountain in this little pond and wanted to take a picture of it.
In my opinion, this may be one of his best photos. I love the lily pads. 

Tate was so excited he got the soundtrack from one of his favorite movies he just had to snap a photo of the case as we listened to the CD on the way home from town.

This picture was taken at Pizza Shuttle in Lawrence Kansas. It's their chalkboard menu. Tate loves to sit right under it. He loves almost all pizza places if he can get a cheese pizza but he likes the atmosphere in Pizza Shuttle.

These were taken after our eye doctor appointment. I was helping Sydney pick out frames and turned around to find Tate snapping pictures. As always of lines and rows of an item. July22, 2015

A privacy fence at a country store in Tennessee. Most people would not
consider capturing a photo like this, but these are the kinds of things that
inspire Tate to pull out his camera or snap a photo with his iPad. May, 2016

This post was inspired because of this one. You might like to read it too. My summer adventures and Tate's pictures of autism.

My Summer Adventures and Tate's Pictures of Autism

Recently two of my friends from college told me they were both going to be near Branson to visit their families the same week. They asked me to meet them for a couple of days. I hadn’t seen one of them in 29 years. I happened to have one of the older kids here and willing to watch my youngest ones and Shawn was all for me taking the time so I did it. I left home for three nights and four days. That was unprecedented for me.

I worried as I drove away that I would spend four days feeling guilty and three nights lying awake thinking of all the things I SHOULD have been doing at home. It didn’t happen though. I was able to enjoy every single minute of my time away. Well, except for the few minutes of embarrassment when I accidently knocked the hotel phone off the hook and it resulted in an accidental call to 911. Oh, and the sunburn. I do wish I had moved my chair earlier that one day. Then, there was the sick feeling when I put a new large door-ding in the van. I parked too close to a pole. But other than those things, everything else was wonderful.

I don’t take a lot of breaks away from my kids. I’ve never felt the need mostly. Then there is the fact that it takes money to go away and a sitter who is able to keep Tate and Sydney occupied and safe. Taking care of Tate and Sydney is a lot of work. The list of people I would entrust them to is a short one. The list of people willing and able to keep them for me is an even shorter one.

In Branson, my friends and I shared stories of our children and their accomplishments. I listened in amazement as one of my friends explained what it takes to become a Green Beret. Yes, her son is one of our nations’ finest and will be keeping the rest of us safe! I could not hear enough of my other friend’s stories of baseball. Her son has scouts from colleges following his pitching “career” and recently a major league scout has been watching him play! Of course, I had a few of my own stories and kids’ accomplishments to talk about! 

I am back in the “real world” now. My husband had to leave town for a few days to help one of our older kids move. All the other kids happen to be out of town on various “adventures” this week as well. So, it is just Tate and Sydney and I. We went to the zoo yesterday. I purposely chose to take them to a very small zoo. It was really hot and I knew they would not last long. We had a fast food lunch and a forty-minute drive. Tate was much more talkative than usual and I enjoyed it very much. Then began our zoo adventure. Both kids kept me laughing with their questions and comments about the animals. The funniest being when Sydney asked me if the pile of hay and sticks in the giraffe pen was a giraffe nest. There was a small train ride. It cost $1.25 and lasted twelve minutes. Tate insisted we ride it twice. It was definitely the highlight of the zoo for him. Typical. What was not so typical is that the two kids got along beautifully all day long. They actually enjoyed each other’s company!

Tate had his camera with him all day. He has become very interested in taking pictures this summer and he does not use the word “picture” but says, “pic” and it sound so funny to me. I looked through his “pics” of our day last evening. It did not surprise me but there was not a single picture of a zoo animal and very few of people. He took pictures of things. We visited a mall after the zoo and ate dinner in a restaurant. Tate snapped pictures there too. He did get a selfie and a couple pictures of me during dinner, but at the mall he took pictures of the escalator, racks of shoes, ceilings, and floors. The ceiling and the floor were not snapped accidently either. He wanted pictures of these things. Things are what he is drawn to, not people. That is typical of people with autism. I looked carefully at some of the pictures and I saw patterns. I saw lines, rows, stacked items, and order. I saw autism.

If you Google the word “autism” one of the first things you will read is that many children with autism have a need to line things up. You might see an image of a child with dozens of toy cars or blocks in a long line. Children with autism do not play with toys appropriately and have very poor imaginations. They use the toys for a different purpose than play. Favorites of children with autism are often trains and Legos. I believe so many kids with autism are drawn to trains because they come in long lines and when one car moves, they all follow. Trains are very predictable. They stay on the long tracks. Legos are such a good toy for the same reason. They snap together in lines and in patterns and stay put. You can control Legos.

It was a great day and all three of us had a lot of fun. I was thinking after I got my kids in bed that I could honestly say, as much fun as I had with my two adult friends in Branson last week, today was just as fun for me. It really was. It was a different kind of day for sure but it was very enjoyable. I had no adult conversation. Instead, I got lots of driving advice from a 12 year old who cannot drive, I heard about how walruses "spawn" (courtesy of Tate and the Disney channel), and I heard a lot about muppets and their attributes. These two children have a lot to give. Neither, will ever pitch for a baseball team or join the military. They will not attend college or even preach a sermon. They may not ever be able to drive a car, or count change so they can work in a store. But they are doing the best that they can do. They see things that the rest of us do not see. They make me proud. 

Below are some of the "pics" from Tate's camera. I think they could go well in a collection called, "Pictures of Autism." What do you think? 

I just started a gallery of photos from Tate's camera.  They can be found here: A photo gallery: Pictures of Autism

Tuesday, July 15, 2014

The Photo On My Living Room Wall

There is a photo of my kids on my living room wall that was taken before Tate was diagnosed with autism. Sometimes when I look at that photo I wish I could step back in time and be with those kids again, not knowing what I know now. They are the same kids I have today, of course. I am still their mother. They are still my kids. They still love me. But it was a different life we lived. It was life before autism. Tate had autism the day the photo was taken. I am convinced he had autism the day he was born. So, what is the difference? The difference is that I was oblivious. I was ignorant of all the hard work that would have to be done, unaware that my hopes and dreams for Tate’s future, my future, were about to be snatched from me. They say, “Ignorance is bliss.” When I look at that photo I can believe it. I remember fondly the days that I did not know what autism was and what lay ahead. My ignorance was bliss. 

The reality is that I had to learn about autism to be able to help Tate. In fact, if I really could turn back the calendar, taking the knowledge that I have now with me, the wise choice would be to go back to the day he was born, long before that photo was ever taken. I would want to know that same day that he had autism. The earlier the intervention and education begins, the better, and I could have begun that very day to educate myself and begin the early intervention Tate needed. So I suppose, although ignorance is sometimes bliss, it is not usually for the best. I would even argue that education is power, knowledge leads to opportunities, and awareness prevents many problems. And that is why I started my blog. I wanted to raise awareness and educate others about autism. If I can end another mother’s “bliss” soon enough then the early intervention can begin and their child will get help sooner, not later. I hate to do it in some ways. I know the pain of the realization that your child will struggle in this world. He may not mature and go away to college. He may not be able to live on his own or marry. His interests may never develop beyond video games or toy trains. But I also know the relief the diagnosis brings. Now the developmental delay has a name and now there are therapies you can do that will help. There are experts you can call and books you can read. Now you roll up your sleeves and fight and work as hard as you can to help your child meet those milestones he has been missing.

Having said all that, my heart still argues with my head on occasion and I sometimes long for the “bliss” that was my life in that photo on my living room wall. I want to be ignorant, just for a little while again.

Want to read about the day I realized Tate had autism? Here it is: The Memory That Does Not Fade

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