Sydney's Apologies and Insecurities

Sydney was diagnosed years ago with an unnamed anxiety disorder. I see the signs daily, some days being worse than others. There are so many little things I notice about her insecurities. One of the things I wish I could help her with the most is her constant need for reassurance from everyone around her, mainly me. She has to double check and triple check every answered question. It goes something like this: “Can I have this last cookie?” An affirmative answer would mean she will ask again: “Are you sure it’s okay?” I will assure her it is fine. She’ll take the cookie and then comment, probably more than once, about how she hopes it was okay to eat that cookie. It is no fun for her or for me. It gets old.

Sydney and Riley

This morning Sydney asked if she could wear the same shirt she wore yesterday. I said she could as it had been washed the night before and was back in her drawer. It’s a new shirt with a cow on it. After I said she could wear it again she asked, “It’s really okay? I just wore it yesterday.” I said it was okay because it was clean. She said, “Okay, if you are sure.” A few minutes later she came out of her room in a different shirt, not the new one. What shirt she wore made no difference to me but I knew the anxiety of not being SURE it was okay with me is what kept her from wearing the shirt and that is the part I hate for her. So, I tried to talk to her about it, as I sometimes do, knowing it probably will not make a difference of any kind. But I have to try. One of these days something might click.

I grabbed a lotion bottle next to me and a small pill bottle next to it and told Sydney I wanted to put on a play for her. I said, “This lotion is a mom and this little bottle is her little girl.” Sydney giggled and got very interested. I had the small bottle scoot over to the lotion and ask, “Can I go outside and play?” The lotion said, “Yes.” And the little bottle ran “off to play.” Then I said I was going to show her another way it could be done that was not nearly as easy. This time I had the pill bottle ask “Are you sure it is okay?” a couple of different ways after the lotion-mother gave the bottle-child permission to go outside. Each time the mother answered it was okay to go outside. Finally the little bottle ran off to play. Sydney loved the little skit I put on and she loved the attention. I talked to Sydney about how much simpler her life would be if she would just take the answer I gave her the first time and did not ask the same question over and over. I told her the first little girl would get to go out to play sooner and asked if she would rather be the first little girl or the second little girl. I thought maybe I was getting through. Maybe. I asked her, “Do you get it?” She said, “So you want me to ask if I can go outside and play?”  Insert heavy sigh. This is my life. Sydney just cannot connect the dots much of the time.

Sydney, June, 2015

Sydney’s anxiety and insecurity manifests itself in other ways. One of the things I wish she could get past is a constant need to apologize. All day long she apologizes. She uses the word “sorry” more than anyone I know. If she does not hear me and I have to repeat myself she apologizes. If she sneezes and I glance her way she apologizes. If she asks me for a drink and I have to get up to get it she apologizes. If she doesn’t feel well and thinks it might inconvenience me she apologizes. I reassure her all day long. Sometimes I lose my patience from being so patient.

And of course, because Sydney knows that her asking the same question over and over for her own reassurance is something I’d like her to work on, she apologizes now after asking the multiple questions. So after she asks if she can go out to play or wear a certain shirt and gotten permission and reassurance, she’ll then apologize to me for asking so many times. Wow. That little fifty-pound girl walks around with a very heavy burden I’m thinking. I tell her so often there is no need for her to apologize. I tell her that “sorry” only needs to be used when she’s hurt someone or made a big mistake. And now I’ve even somehow got her saying “sorry” for saying “sorry” so much. Being Sydney’s mom is like walking a tightrope. But I’d walk it across the Grand Canyon if I had to because my little girl needs me and I can do this. I will have enough confidence for both of us.

For more about Sydney's diagnosis, see The F in FAS does not stand for Fun.

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