Glasses, Eye Drops, and Drama

The first time I ever took Tate to an eye doctor for an examination I believe he was still in preschool. It was something the early intervention team wanted us to do. I had no worries about his vision but I wanted him seen by a doctor experienced with kids having autism. Children’s Mercy Hospital assured me they were the one I was seeking and I was very impressed. The Ophthalmologist at Children’s Mercy Hospital agreed with me. Tate was seeing fine. The second time we took Tate, he was in elementary school and was probably in second or third grade. I took him because the school nurse insisted he was not seeing well. I knew (or thought I knew) it was just his inability to understand the test directions and communicate with the school nurse. So we trekked over to Children’s Mercy again to see the pediatric eye doctor. His eyes again tested fine. When Tate was in fifth grade the school nurse failed him on the eye exam again and wanted me to take him back tot he eye doctor. I ignored her. When Tate’s sixth grade teacher and Para both told me Tate was struggling to see I made another appointment, fully expecting to fine nothing wrong with Tate’s vision. As we sat in that exam room and Tate tried to read the letters on the wall across the room I was stunned. The eye doctor asked me if I was sure Tate knew the alphabet. He’s known upper and lower case letters since he was a toddler. I wanted to crawl under the chair while someone made me a sign to wear that said, “BAD PARENT” because I had not known Tate needed glasses to see. He was as blind as a bat. Apparently, if a kid’s eyes are going to “go bad,” they often do it about the fifth grade.

The day Tate got glasses was quite a memorable day for more than one reason. It was snowing so hard that school was cancelled that day and I was going to cancel the appointment. It was a long drive and I did not want to make it. But my husband Shawn insisted he would drive us so we went. Normally if my husband goes to appointments with us he sits in the waiting room and works from his phone. He is a HVAC contractor and does a whole lot of his work on the phone. I asked him to come back with us. I suspected Tate was going to be a little difficult if they tried to put drops in his eyes. Wow. Was I glad Shawn was with us! Tate put up a fight. He did not mean to. He tried so hard to sit still and allow those drops to fall into his eyes but he just could not keep his hands down and his head still or his eyes open and he was thrashing around like a wild man. Tate is strong. He does not have much coordination but he is strong. And he is big. At that time he was over six feet tall. It took a lot of work and a long time to get those drops in Tate’s eyes. Without those drops though, they could not have really prescribed him glasses. Because kids like Tate cannot really go through the lenses and tell an eye doctor if their vision is better or worse, the doctor has to dilate the pupils and then look into the back of the eye and “see” for the patient.

Tate hated those drops so much. I don’t know if it was the stinging eyes, the dilated pupils, the required sunglasses, having to hold his eyes open for the drops, the invasion of his space, or the way his eyes felt for the rest of the day he hated the most. But when I told him a few days ago it was time to see the eye doctor again, it was the drops that became his number one topic of conversation for the next few days. He came up with every excuse in the book, including, “We only go to the eye doctor when it is snowing.” I got texts and his siblings got texts about this injustice. (I've posted his texts below.) He was sure I had made a grave error in scheduling an appointment in July. I promised Tate I would ask the eye doctor if there was any way we could forgo the drops this time. And I did ask but her answer was, “No.” I will insert here that both the doctor and her assistant were so patient and kind. They listened to Tate’s concerns in all his broken language. They waited for him to finish. We received a lot more than our fair share of time. They gave him several options, one of them being he could lie on the floor if he liked when they put the drops in. They worked hard to accommodate him. He chose to sit in the chair and try to do it without anyone holding his hands or head. He also opted to have Sydney go first (Yes. She had not had her eyes checked for about three years there so I had scheduled her too. Of course she was EXCITED to be there!) Sydney did fine as expected. And he did a great job compared to our last visit. He couldn’t keep his eyes open and his eyelids are SRONG. He kept raising his hands to “defend” himself but he tried hard not to. I held his hands down in the end but we got it done without other adults coming in. There were two nurses actually standing in the hall, ready to assist if we needed. He was proud of himself and he has not complained once since it was done! He has thin plastic slip-in sunshades for his glasses from the appointment and he is wearing them like a hot new accessory.  

Tate’s prescription had barely changed. But I got another surprise. Sydney needs glasses. She has always had a problem with her left eye drifting a little when she is tired. I don’t even notice it anymore but Shawn and her siblings do sometimes and they mention it once in a while. That drifting was the main reason I had made the appointment. I wanted the doctor to look at that again. Each time in the past the doctor told me it was not significant enough to treat. She told me that again today. However, now Sydney’s left eye has developed the need for glasses, unrelated to the other problem. The doctor said Sydney is using her right eye, which has almost perfect vision and not using her left eye, which is near-sighted. I have the same thing going on with my eyes and have since I became an adult. I caught myself just as I was about to say, “She gets it from her mama.” Oh yeah…. Ummmm No.  I have no family history on her birth mom’s eyes. Sigh.

So, we left Children’s Mercy and headed to Wal-Mart where we got three pair of glasses, one for Tate and two for Sydney. The total bill for three pair? $150.00 The frames are guaranteed for one year too. No questions asked. For kids under 18 years old, Wal-Mart does this as a service. Like them or hate them for many reasons folks but I like being able to afford the kids’ glasses so easily. I’m so glad a friend told me about their program for kids when Tate needed to get glasses. And of course, Sydney is excited and that will probably last a week. I imagine I will wish I had bought six pair when she starts losing them. 

This was 24 hours before
the dreaded appointment.
For ears? Seriously?
They made a huge
mistake then!!

There's been a huge injustice!
And he's still holding a
grudge about the past
appointment and the snow
day as well. Note:
Tate is always ready to
throw Levi under the bus.
He often tries to shift the
focus. HA!

He's desperate now. This was minutes
before we walked out the door. 

If you happen to be following Tate's photo gallery, he added a few today. While Sydney and I were looking at frames, I caught him out of the corner of my eye taking photos of the rows and rows of glasses. As usual, it's all about uniformity and lines. I added them to the post of his photos when we got home. You can find that here: Tate's photo gallery

And if you are interested in our dental visits then this is the post for you: cleaning, filling, and straightening the teeth of autism

Tate's Texts

My thirteen year old son Tate has autism. He also has 3 brothers and 3 sisters and an iPad with a texting app. Tate loves to text. Often we can hear clearly in the texts things he could not communicate orally. When conversing orally with Tate there are delays while he processes and tries to catch up. There are distractions and we can totally lose him. We interfere with his processing by repeating questions or becoming impatient while we wait on him to process. We try to put words into his mouth and finish his sentences sometimes to speed him up. We often think we know what he is trying to communicate to us and we are not always correct. Tate's written communication is not always easy to understand, especially if he is uninterested in what he is writing about (school work.) However, when Tate is focussed and invested in what he wants to converse about, he nails it. Just as his favorite conversation topic is movies when he is speaking, movies are the number one thing he texts us about as well. Following are some of the best of the best texts Tate has sent us. 

A penny for Tate's thoughts...

This was one of the first texts Tate ever sent. It was sent to his oldest brother Titus. Tate came home from school sick. Tate's science teacher had given him a penny they had used in an experiment. That was two years ago and the penny is still a favorite treasure. Notice how resourceful Tate can be. When he cannot spell the word "picture" to Titus' satisfaction he switches to the word "photo." This photo of the screenshots strung together is a little harder to read than the others. Stick with it. It's worth it. 

               #1 of 3

                  
                  #2 of 3

                           #3 of 3

Tate's thoughts on Jack Black, Goosebumps, and Halloween...

This is a very recent text, sent to Tate's oldest sister Regan. It is an example of what Tate does when he hears of a new movie he'd like to see. He fills someone's inbox with images and texts. The target lately has been Regan. She's so patient with him, even though he misspells her name every single time. Ha 

Tate picks random numbers out of the air when he wants to count something. You might have noticed he says this is Jack Black's 27th movie and he mentions a 26th book. He could have latched onto those numbers from a website but he often just "guesstimates" and has no basis for this guesses. Did you note that October is "4 months, 14 weeks, 24 days" away just a few texts before he says October is "3 months" away? And the name Cooper caused Tate some confusion because it is used more than once by the same actor? Who else would even remember a character's last name was the same in the last movie they saw him in? Words like "niece" being spelled as "nice"," "donkey" instead of "don't," and "vary" when he should have used "very" make these texts even more endearing to me. The joke about the dummy being made of wood and using the word "wood" instead of "would" cracked me up. I seriously doubt it was his own joke. He probably saw it somewhere else. But once in a while Tate really does surprise me with something original. Oh, and the reference to Levi needing to read the books is so funny to me because Levi and Tate neither one like to read much. Both would much rather see a movie. Tate is saying Levi should read the book first but he will not offer to do the same! Tate looks out for Number One! Ha

After all that commentary, Tate still felt the need to send another the next day. 

Tate's birthday is October 11 and Halloween is a favorite holiday so I'm pretty sure the 16th has never been his favorite day of October before. And speaking of Halloween...

#2 is clearing the calendar. I lost it on that one. #4 and #5 are in reference to a Halloween 2 or 3 years ago when we didn't make it to the pumpkin patch and ran by a store to get the kids' some pumpkins to carve after a church service. Tate can hold a grudge for years. 

And speaking of grudges. If he gets mad at Mom for something then his brothers and sisters hear about it. I put his teeth "in danger" in this text. Oh, and things he does not want to do are often "illegal." I wondered where the "bedding" (betting) reference came from and a Facebook friend clued me in. (Thank you Amanda Z.) It is a Big Hero Six reference. Tate uses so many movie lines and they often fit right into a conversation quite appropriately. Sometimes I can identify them but often I cannot. I just know that many of Tate's thoughts are not original but "borrowed." 

Tate's thoughts on braces...

Tate's thoughts on righting a wrong:

and then the next morning....

This was a big deal in Tate's world and made the rounds in our family. It is one of my all-time favorites. The last nine weeks of 7th grade bike rides were part of Tate's Physical Education program at school. He'd just learned to ride a bike at an iCan Shine Bike Camp the summer before and I'd hoped they could work on it at school some. Tate was so upset his bike was "out of place" and being kept at school. When I wouldn't come to his rescue, he planned a bike heist and wanted Levi and all three sisters to assist him in his efforts. They were "gianna" get his bike back. He often texted me pictures of his bike sitting on the front porch "where it belonged" and reminded me that keeping bikes at school was "illegal."Ha

Tate's thoughts on The Tablet of Ahkmenrah:

Most texts are about movies and Tate can become very persuasive (demanding). The Night At The Museum Movies are a favorite. He is obsessed about the tablet of Ahkmenrah and of all the things he misspells, that is not one of them. 

 

Tate's thoughts on justice, and my typos:

What a little hypocrite. His spelling is so much worse than mine!

Tate's thoughts about the care he was receiving in my absence recently:

Notice how Tate reassures me he's okay in the first text. He does that when he's stressed and he wants to reassure himself. A day or so later he texted me to tell me he was too busy to text me. By the end of the week he was hardly missing me. He did great. We'd only been apart that long the two times I travelled to Russia to adopt Sydney. He was 3. I think it was much harder on him back then. Tate's sisters sure will be glad when he learns to spell their names correctly. 

  

And I'll end with my personal favorite. It was so random and I loved how he thinks I'm clueless and need guidance in these things. HA

I have more texts saved but these are my favorites. I may update this post from time to time as I do his photography. If you'd like to see some of Tate's photography...  If you'd like to see Tate's "P I T C H U R S" then here's the link to that: The pictures from Tate's camera

"Why" Questions, With No Answers

I read somewhere that a mother of a five or six year old child answers around 300 questions a day. Multiply that by the number of days in a year and the number of children around. Sometimes moms get tired of answering questions. Sometimes a mom might even tune some of those little voices right out and stop answering some of those questions. I’ve done it.

The where, how, what, and particularly the why questions can get tiring. And it is especially trying for a mom when a child questions her instructions with “why.” I have been known on occasion to use the old “Because I said so” standby that my own mother sometimes used.

My youngest two are eleven and thirteen so I should be done with the constant questions, but I am not. Because of Sydney’s developmental delay it seems we are stuck there, never able to move on to the next stage. I’m almost certain Sydney is still asking me 300 questions a day, much as a five or six year old would. Sometimes I feel like I am living a life like Bill Murray lived in the movie Groundhog Day. It gets so repetitive. Sometimes, I find myself tuning her out and even asking her to stop asking questions for a few minutes so I can concentrate on the task at hand.

Although Tate also has a developmental delay, his is a different story. Due to autism Tate rarely asked me the why or how questions, or much of anything else when he was younger. And when he did, it was something I celebrated by letting everyone close to us know that it had happened. But lately, Tate has surprised me several times, almost grilling me, about a subject. His why questions are coming more often but they are not usually the typical why questions a younger typically developing child would ask. Tate often wants to know the answers to questions that many of us would not ask.

Yesterday Tate asked me where his older sister was. I explained she was on a road trip, travelling to visit friends. So he pressed me for details, wondering exactly where she was. I was taken aback just a little but was happy to answer. I told Tate what state his sister is in right now. He then said, “How come she wanted to visit friends?” and after that one, “When will she be home?” Because Tate very seldom is interested enough to ask questions about these kinds of things, it was surprising to me. And as often happens, when Tate does something he did not do “on time” it is a giant reminder to me of all the things he SHOULD have done. And it reminds me just how far behind he really is, on more than one level. He truly did not understand why his sister would drive hours to see friends. He would not inconvenience himself like that to see someone. Knowing he could not comprehend the WHY behind my daughter’s trip made me sad. But I still celebrated his interest and the fact that he had asked.

Because of Tate’s lack of social skills, sometimes he loudly questions things the rest of us would not because it would be considered rude. For example, when we have visitors in Bible class (Sunday school), he demands to know WHY they have come. No matter how many times I remind him we want visitors to feel welcome and invite them back, he treats them as if they are intruders who need interrogating. I know his questions have a lot to do with the change in his routine. A visitor causes him a little unease. But, I have found myself wanting to ask Tate, “Seriously? Now? Now is the time you decide to ask questions? You did not ask them at all the appropriate times, but you can come up with this many questions when the time is not right?”

Alas, it would do no good to ask him because Tate answers questions with less reliability than he asks them. His receptive language is so much better than his expressive language so he cannot explain the motives he has behind much of anything. He cannot usually tell me why he does anything he does, nor can he put into words how he feels about things. When Tate uses the word “because” in a sentence it seldom really fits. He might explain to me why he paces when he is anxious by telling me, “Because that is what teenaged boys do.” If I ask him why he does not like the braces on his teeth he will tell me something like, “It is illegal to put braces on thirteen year old boys.” I think I know the answers to those questions and I suspect he also knows the answers to those questions but he cannot communicate those things to me with words.  

And just as I was typing up the end of my thoughts on this subject, my husband came from Tate’s room chuckling. He had just asked Tate to speak to his grandparents on the phone. Tate, totally baffled as to the reason his dad was interrupting his movie viewing to speak on the phone, asked, “Why?” Reasons like, “Because they’d like to hear from you.” or  “Because they love you.” do not really solve the mystery for Tate. So the first thing Tate said in the short phone conversation he had with his grandparents was of course, “Why’d you call here?”

You might also enjoy this post: Lost in the Translation or this one: Speaking Tate's Language

A Happy Camper or Not?

The blog is mostly about my two youngest with special needs but this particular post is a little different. Don’t click out when you see the word “bible.” I’m not going to preach to you here. Although my religious beliefs and convictions are extremely important to me and I’d love to share those with you, I am not going to do that here. I’ll get around to my autism related thoughts on this post eventually but you’ll have to take a walk down memory lane with me first. And by the way, if you do want to know more about my religious beliefs then private message me. I only have one topic I like to discuss more than autism. It’s the bible.

I just spent a week in Texas at a bible camp for young people. I was a part of something great there. This particular week at this particular camp was focused on leadership. There were classes on how to lead a song, study the bible, and how to outline, write, and present a lesson. At the end of the week many of the campers presented their first devotional or led a song or public prayer for the first time. Their enthusiasm was so encouraging.

Bible camp has been a huge part of my life as long as I can remember. I loved going as a child. There were bonfires, hayrides, and late night devotionals, crafts, pranks, and silly songs, old friends reunited, and new friends made. We had ping pong tournaments, played card games, and even had watermelon seed-spitting contests. I fell asleep in a rustic cabin with the sounds of girls giggling and crickets and frogs singing. The perfume of the week was always bug spray and sweat. Going to camp was as exciting to me as Christmas. I would pack a week ahead, unpack, and repack. Before I was old enough to go to Little Blue Bible Camp in Missouri, at age nine, I jealously watched my older siblings gather their swimsuits, flashlights, bug spray, ball gloves, and Bibles every year. I’d follow them to their cabins and watch them choose their bed for the week, anticipating the day I would be able to do the same. I remember the first year I was old enough to stay. I got a top bunk and was ecstatic. The abundance of spiders was hard on me but even those spiders could not deter my enthusiasm for camp. As I got older I also went to camp in Kansas and in Nebraska. I loved every one of them. 

When I aged out of going to these camps as a camper, I began going as a counselor. Between my sophomore and junior year of college I spent a whole summer working at a camp in Arkansas near Harding University where I attended college. That was an amazing summer. Three of my kids have chosen to spend their summers working at a camp after they were too old to go as campers. Currently, two of my children are working at Green Valley Bible Camp in Rogers, Arkansas all summer. They are the lifeguards and kitchen help there. They love their jobs.

The camp I attended this week was near Maud, Texas. It is called Camp Ida. I was in charge of crafts. I also worked in the kitchen and it was exhausting work. It was hot and I am covered in mosquito bites, but I am so glad I went. I made some wonderful new friends and heard some great lessons. The bug bites will fade but the friendships and wonderful memories will last.

I was asked the same question many times this week: “Why didn’t you bring your kids?” It is a fair question. Tate is 13 and Sydney is 11. They should be going off to bible camp each summer just as their older siblings have, right? Oh how I wish I could have taken them with me. Most of my readers “know” Tate and Sydney well enough to understand why I did not take them to camp. Sydney actually would have loved camp. Once we got past that first hour in the morning and her medications took control of her hyperactivity she would have been able to sit for most of the daytime activities. But in order to really participate in things she would have needed adult support. She may actually be able to go to camp one day.

It makes me sad but Tate will most likely never go to camp. Tate’s autism and the anxiety that comes with it keep him from doing so many of the things his older siblings have loved. Tate is miserable even visiting the campgrounds his older siblings have attended. He’s grown up watching his older siblings happily ready themselves for a week of camp but instead of anticipating the day he can go, he lives in fear of us sending him to camp too. Recently a friend asked him if he was old enough to go to camp this year. Tate immediately said, “No. I am home-camped.” It cracked me up. He knows what homeschooling is and extended that to camp. I celebrate when he is creative or original because there was a time when he was not able to communicate that way.

As I looked around me this past week at the beauty of the campground and I heard the children playing, singing, and participating in bible classes, I tried to picture Tate there. He would have been using stims to cope and he would have appeared very odd to the other campers. Being the great kids they are, they would have tried to include Tate but he would only have wanted to talk about how many days and hours there were left until he could leave. He would not have been able to sleep at camp and he would have not eaten most of the food available to him there. He would not have enjoyed the pool because he only swims at home when it is quiet and there is no splashing. He would have hated the smells, the sounds, and the heat at camp, but more than any of that he would have hated not being able to have a dvd player in one hand and an ipad or ipad in the other. His movies are as important to him as the food he eats.

I got several texts from Tate this week and a few phone messages. Although he was being very well cared for, he was anxious because I was not home. He went into crisis mode when one of his favorite movies stopped playing due to a scratch on the disc. Of course the scratched disc is one that is not commonly sold at stores so it had to be ordered. Thus he has worried, paced, rung his hands, missed out on sleep, and talked of little else for the past few days. Tate will check the mail each day until it arrives, insisting the date of arrival we were given is probably a mistake and it will actually come earlier. This is our life. This is autism. Autism has robbed Tate of so many precious things, bible camp included.

Want to read more about autism? Try this one: Unpredictability