Sydney: From the Back Seat of the Van

A while back we took a trip with the kids. Seat belted in the van. For hours. And hours. And hours. For some families, for some kids, this might not have been a big deal. For us, it was. We were traveling with a lot of capital letters. The letters FAS were in attendance. Those stand for Fetal Alcohol Syndrome. Then there was ADHD. Those stand for Attention Deficit/Hyperactivity Disorder.  And those are just the letters that our precious little Sydney brings with her. Our son Tate brought ASD. Those letters stand for Autism Spectrum Disorder. Tate is the youngest of our biological children but Sydney is our youngest child.

Sydney is adopted. We found her in an orphanage in Russia when she was six months old. We met her when she was almost nine months old and we got to bring her home when she was ten and a half months old. We were well aware of the fact that she could have special needs. We were of the opinion since meeting her that first time that she does have special needs. We got her diagnosis when she was two years old. She’s now ten. This story is from my archives and took place when she was eight.

Trying on hats

Sydney had been a real trooper for days as we confined her for long periods in her car seat and dragged her from one place to another where she was told to stay quiet and sit still. As her parents, who know her so well, we know just what she is and is not capable of and we try not to ask more of her than we know she is able to handle. Others, who do not know her background or know about her disability, probably often wonder why we allow some of the things we do. I used to think ADHD was basically code for “child without any discipline at home.” I now understand and am so glad I have been humbled in this way. The judgmental and uncompassionate person that I was, needed to be humbled. God always gives me what I need.

We had been in our hotel room on night one of our trip for a very short time when we got a call from the desk saying they had received a complaint about noise coming from room 309.  That was us.  It was true we were probably a little too loud considering our very late arrival time. I had been trying to quiet the kids down and had been fairly proud of Sydney for her behavior, considering the medication she takes for hyperactivity had worn off hours before.  I got her into bed quickly. She did not really get to stretch her legs and move around much after being confined to the car for hours. I hoped she would sleep-in but knew she probably would not. She woke early but I was able to convince her it was still not REALLY morning, thanks to the room-darkening drapes hotels have. We slept until around 8:30 and that is almost unheard of for Sydney. Within minutes of her getting up, we got another call from the front desk. The noise coming from our room was mentioned again. In disbelief I exclaimed, “You’ve got to be kidding me! We’ve only been up for a few minutes and we are whispering.” The man said it was the people below us who were complaining. Were we stomping when we walked? Did we have children running back and forth? Of course! SYDNEY!  All forty-two pounds of her was making too much noise for the folks below us. This was a really nice motel. Surely the wall and floors are not that thin and delicate. I quickly gave Sydney her medication and put her in the shower to play for a while. She thinks the shower is as good as any water park. Once her meds had kicked in and she was out of the shower, we made sure she sat on the bed until we were packed and ready to go. Of course, I did not want to infringe on the rights of others, even if they were being a little ridiculous.  

I’ve always been of the opinion that my special needs kids’ rights end where others’ rights begin. In other words, I believe that my kids should have a right to an appropriate education and many other things, as long as it is not interfering with the ability of the other children to learn or participate in the activity. I said that to say this:  I am not unreasonable. I am not demanding the world bow down to my kids because they have handicaps. They are not a burden to me but I actually am very aware of the “burden” they may be to some people they may encounter. I try to be very proactive in preventing problems before they arise.

That night and that morning when I knew someone was complaining about my noisy little girl, I wanted to find the “victim” and explain. I wanted to tell them until they had walked a mile in my shoes, maybe they should just suffer through fifteen minutes of noise while I got my kids into bed. I wanted to ask them if they had ever known a child who had to take a medication just so she could calm herself enough in the morning to breath normally, have a rational thought, and walk instead of run where she wanted to go. Would it have done any good? Perhaps not. Perhaps that person is the person I was before I had these two kids and all these capital letters to raise. Perhaps that person needs to be humbled but it is not my place to humble them. These are the kinds of things I have learned since I became the parent of a child with special needs. My Sydney, running, walking, hollering, or whispering, is a joy to be around. People who complain about her noise? They are missing out. 

I couldn’t talk about our travels with Sydney without remembering some of the things we heard from the back seat. 

Sydney: "Dad, I have a riddle for you. We ran over a possum and his dad had to take him to the shop. How is this possible?"  One of our older daughters, Bailey, had told us some riddles the day before and she ended all of them with “How is this possible?” One of the answers to one of Bailey’s riddles was: “His mother was the surgeon” so when Sydney demanded we try to answer her riddle, her daddy said, “His mother was the surgeon.”  Sydney, not understanding any of the riddles from the day before, and having no idea how her own should be answered, said “OOOOOHHHHHH!” She sounded so relieved that someone knew the answer and she didn’t even question him about it.

A second attempt at a riddle: "We ran over a possum. His grandma took him to the gas station to get air in him. How is this possible?" Same answer.

Sydney: "I know how to say pizza in Spanish. Hildora." We humored her and one of her older brothers and I repeated, “hildora.” Sydney immediately responded, "You are saying it all wrong. It is caldooza." She loves to change the rules mid-game and she loves to correct people so she does this kind of thing often.

Sydney hollered, "Look at that! A giraffe!" I was already looking out and had just seen a display of Santa and his reindeer but I looked around for the giraffe. Then comes a giggle and "Made you look!"  Of course, once she got me, she tried to do it again for the next hour. She claimed to see chickens on the road and many other things that were not there.

The thing we heard the most was, "OH! Do you see those cows? Aren't they sooooo cute?" She noticed every cow between home and our destination in Tennessee and commented on every one of them. 

Also by this author: "15 Truths of Parenting Special Needs Kids."

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Motor Mouth

Once in a while, my quiet boy with autism disappears for a little while and a chatterbox takes his place. It is usually when he is very excited about something. When we went to pick out our Xmas tree this past December, Tate talked more than I had ever heard before and it lasted for hours. We have repeatedly noticed when Tate runs a fever he turns into a motor mouth too. Tate was very eager because we were going to see “Pirates, Band of Misfits” at the theater. He told anyone who would listen about his plans to see the movie after school. He told most people more than once I think.

Tate, third grade

On the way to school this morning Tate pointed down the road, in the opposite way we were turning, and said, “So, what is down that road, the zoo and the camera store?” Of all the things he could ask me about he picked “the zoo and the camera store.”  It cracked me up. I told him that we could get to either a zoo or a store to buy a camera, by going in the direction he pointed. Questions beginning with where, what, why, when, or how, are a big deal around here. Most toddlers ask “why” dozens of times a day, and wear their parents out with questions. Tate did not. Now, he does occasionally ask questions. When he does, it takes me by surprise because I seldom hear him do it. The autism is never more “real” to me than when Tate does the things that he should have been doing all along.  It is like: I don’t know what I am missing until I have it and then lose it again.  When Tate becomes a chatterbox for a few hours, or even a few minutes, it just reinforces for me, all the things he (and I) missed out on. 

Tate was pretty talkative this morning at school. They had a “fun day” today and there were stations with activities outside and in. Tate initiated a conversation with one of the parent-volunteers, which is a pretty big step. He asked her, “So, did you go to college?” She said she had and then Tate asked her another question about college. It was not the most appropriate thing he could have started a conversation with. It was pretty random, but I’ll take it. We have been working hard and practicing conversation skills with lots of coaching, and it is paying off. Tate’s team at school has been coaching him and they practice with staff members every day. They have spent time talking with Tate about appropriate questions to ask and “weird” questions people would not ask each other. This all has to be taught because Tate will not pick it up from his environment like his peers have. 

We were standing in line to buy our movie tickets this afternoon when twin boys, a little younger than Tate, came in with a young lady, probably a sitter. The boys both had autism and caused quite a ruckus while waiting in line. It was very tough for the adult to buy tickets and keep the boys both with her. They were everywhere at once, touching anything they could reach. I did not pity the boys or the caregiver but I did admire the caregiver for bringing the boys to the theater. Watching those boys reinforced for me how blessed I am. Tate has so many skills that many with autism do not. I have three boys and three girls that do NOT have autism. I can only imagine how much more challenging things would be for me if two of my children had autism. The Center for Disease Control released a new statistic last month: 1 in 88 children have autism now and it is 1 in 54 for boys. If autism does not directly affect you now, it is probably just a matter of time. It is important to educate yourself about autism, more than ever before. 

Another post you might like to read: A Sack of Potatoes

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