Breaking Bad News, Tate Style

My thirteen-year-old son Tate has autism. Autism frustrates me. However, Tate does not. I adore my son and I am very patient with him. But, sometimes I want to shake my fist at autism. Autism keeps Tate from understanding so much about the world we live in. Autism keeps Tate from being able to verbally communicate well and converse. Lately we have found that Tate expresses himself better in text messages than he does verbally. I believe that it is partly because he can take his time. For Tate to converse with someone in person the other person’s very presence seems to intimidate him slightly. He is easily distracted and loses his train of thought no matter how patiently we wait on him to process our language and respond. Texting has helped Tate to be able to get his thoughts and feelings across to us. Tate often texts his adult siblings. They enjoy his communications very much.

Daisy and a box turtle she found

Recently, my dad, Tate’s grandpa, lost his beloved German Shepherd in a tragic accident. My dad lives right next door to us. His dog Daisy spent most of her time lying on a rug in front of my dad’s recliner. But occasionally Daisy liked to play outside in his yard and in ours. We live out in the country where there is little traffic and our houses are well off the road so we were surprised when Daisy ran right out into the path of an oncoming car and was killed.

Tate, because of sensory issues, has never liked animals. He especially avoids dogs. They scare him a little I think. Tate knew Daisy’s name but he did not call her by her name. He called her, “The neighbor’s dog.” I asked Tate on several occasions why he did not refer to Daisy by her name or even call her “Grandpa’s dog?” Each time he told me the same thing, “She IS the neighbor’s dog.” Technically he was correct. He had me there. He does not refer to my parents as “the neighbors” but calls them “Grandpa” and “Grandma.” However, the dog was “the neighbor’s dog.” I think it may have been one more way of keeping the dog at arm’s length for him.

Tate does not often show empathy or sympathy for others but I have seen it on occasion. Tate was worried about his grandpa being sad. He asked me about it more than once.

Left to Right: Tate, Titus, Emily, Regan,
Levi, Sydney, Bailey and Isaac. Dec. 2014

Tate broke the news of Daisy’s demise to his brothers and sisters in a text message. I believe this is the first group message he has ever sent. Always before he has messaged them individually even if he said the same thing to each of them. Following are the screen shots of those texts back and forth. My older kids are so good with Tate. They know him well and can often understand what he is trying to say even when he does not say things clearly. Notice how he tries to correct the spelling of “aye” and how he picks up on the way they voted with “aye” and then wants to take a vote with “not” too. 

Note: We live in Kansas. Three of the kids were together in Arkansas when Tate was texting them. Levi, aged 17, was at Bible camp as a camper. Bailey, age 20, and Isaac, age 22, work at the same camp in Arkansas. Tate wanted to make sure they ALL got the message. Titus is married to Emily and they live in Connecticut. Regan was in Kansas but not with us at the time. She was in blue in the text as she was the one who forwarded the text to me. I sure love my kids. They all six are so good to answer Tate's texts and communicate with him anytime he needs them. I am so proud of them all. 

You might also like to read Tate's Texts

The Autism Diet

If he asked for it, I gave it to him! This
loaf of bread was supposed to be
sliced and buttered for a family meal
but Tate wanted it. I did not object. He
ate so few things. I was thrilled to
let him walk away with it. 

Got a picky eater? Is picky an understatement? I feel your pain but there is hope. There was a time when Tate ate only about a dozen things total. It didn’t start out that way. He ate baby foods okay and seemed to be a lot like his siblings were when he was a toddler. He ate a lot of finger foods and ate off my plate. But around age two and a half when the language regression hit us, many other signs of autism appeared. The stimming began with hand flapping. Then the refusal to eat almost everything we offered began. When Tate was around three he would eat so few things I could name them easily. And from the time he was three until he turned six or seven his diet consisted of about one dozen things, with very few exceptions. He ate popcorn, crackers, and chips, french fries, waffles or pancakes, grilled cheese, cheese pizza, cinnamon toast, and a couple of kinds of cereal. He would eat a peanut butter sandwich (with no jelly) and the peanut butter was smooth, not crunchy. He would also eat a McDonalds cheeseburger if it were plain. No other cheeseburger would do and he knew the difference immediately if we tried to trick him. Once in a while he would eat chicken nuggets but not usually. I made them available to him often hoping he would eat one. I do not know why he occasionally would but I was always beside myself with joy when it happened. I worried a lot about his calorie intake and his nutrition. There was not a vegetable or fruit in his diet. Well, except that he discovered apples about age four or five and I could coax him to eat one of those once a week or so. That happened sort of by accident I think. Tate used to love to get an apple from a bowl of fruit I have sitting on the counter. He would call it a ball and carry it around for hours sometimes. One day he was sitting on the staircase with his “ball” and I saw him examine it closely and take a bite. I watched him take a few more bites. I quietly cried tears of joy. Then I called my relatives and best friends to tell them about the breaking news. And probably if you are reading this blog you totally get why. This was huge. From that day on he would occasionally eat an apple.

Always a favorite, Cheetos

There were days when Tate ate nothing or almost nothing. There were other days when he would only eat crackers, or only eat popcorn. Nothing made me more annoyed than to get advice from others who said I was catering to Tate and he would eat when he was hungry. They thought I should just put food on the table and he would soon figure out I was not going to make him a different meal than the rest of the family. This kind of advice is ludicrous in my opinion. I’m not sure my child with autism even feels hunger the same way I do but I know if he does he can ignore it. Tate would have outlasted me. Once when he was a toddler he went for three days without eating. I was not trying to outlast him or introduce new foods. I had all his favorites available for him. He wouldn’t eat. He often refused food if his throat was sore. He could not tell me his throat was sore. I could only guess, usually because of a raspy voice or increased drooling.

Those who do not understand autism love to offer advice about how to feed a child with autism. Their advice often requires a tough love approach. Trying to wait out a child with autism is not a very effective strategy in my experience. And hearing, “He’ll eat when he is hungry.” only reinforces for me the ignorance of the one speaking. The difference between a picky eater who is typically developing and a child on the spectrum with food aversions is enormous. I believe it would be like comparing someone who needs glasses to someone who is legally blind. One is inconvenienced and one is handicapped.

I am definitely not an expert on food issues, nor have I dealt with them to the degree so many others have. Tate’s diet was never limited to one or two things like some others. I do not have a whole lot of answers about how to get a child to eat anything they do not want to. In the first place, compared to many children with autism Tate’s diet was huge. I know of a toddler with autism who had one food he would eat - mustard flavored pretzels. I was lucky to have a kid who would eat a dozen different things and a few of those could even be changed up slightly. Secondly, just because something worked for us does not mean it will work for the next kid with autism. And thirdly, the things we tried worked sometimes and not others. There did not seem to be a whole lot of rhyme or reason with Tate’s choices or refusals. And he sure couldn’t tell me what he was thinking or feeling.

The things I remember that may have helped the most are probably all things most moms of kids with autism will have already tried. Of course the first I have already mentioned in the examples of the chicken nuggets and the apples. I made things available to Tate, hoping he’d try them one day. I didn’t take the apples away from him even when he was rolling them around or just holding them. He bruised a lot of apples. We wasted a lot of chicken nuggets too. Another was that I pushed him without forcing him to try things. I could sometimes talk him into just licking something and then I made a huge deal out of him “trying” it. A couple of times those licks turned into bites and a new food to add to the list. Some of the biggest successes we had happened at school. Tate had a Paraprofessional he adored and in fourth and fifth grade Tate often tried new foods at school because he wanted to please the teacher he really liked. Having all the peers around him eating something may have played a big factor there too. Tate tried popsicles, cupcakes, watermelon, and lots of other things at school. Some of them he would continue to eat at home after that.

The seeds don't even cause him to flinch these days.

I did occasionally try the tough love approach, although it was not very tough really. I was so tired of McDonalds one day when Tate was about five or six years old. I told him I would take him for a cheeseburger but it was not going to be a McDonalds cheeseburger. Tate protested but I stood firm. We went to Wendy’s. I had tried other times to get Tate to try cheeseburgers from places other than McDonalds and had no luck. This particular day Tate agreed to try the burger. He ate the whole thing. And then he believed me. Other places do make good burgers. Days later he ate a Sonic cheeseburger. For several years then he would eat a plain cheeseburger almost anywhere as long as the bun was not toasted and did not have sesame seeds on it. Lately neither one of those things matter either! The day may be coming when he can tolerate a little ketchup on the burger. Who knows?

Just keep trying folks. If you can even talk your child into touching something new on their tongue you've made progress. Tate's diet at age 13 is not exactly a balanced one but he will try a new food without too much drama. His diet has definitely increased lately. Don’t give up hope for your child. It could happen for you too.

If you enjoyed this post then you might like It's Too Loud In Here or Don't Touch My Skin

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