Tate's iPad, Both a Blessing and a Curse

My son Tate is 13 years old. Tate has autism. When Tate was about nine years old my husband brought home our first ipad and our life was forever changed, in some ways for the better and in other ways…. not so much. That first ipad was something the whole family enjoyed and used. It is a mystery to me that Tate knew how to use it from day one. There was no learning curve or need to give him any instruction. I, the grown up, had no idea how to do anything with it, including turning it on. Yet Tate could take pictures and videos, get online, draw pictures, watch movies, and all kinds of amazing things from the beginning. Time with the ipad was coveted and the kids fought for their turn. About the same time we got our first ipad, those wonderful tablets began showing up in our children’s classrooms so Tate had the opportunity to use an ipad there occasionally. It was used both as a teaching tool and as a reward very successfully. Tate had been struggling to master two-digit addition for quite some time and he was making no progress. The day Tate’s paraprofessional pulled up a chalkboard on the ipad, and they wrote with their fingers on the ipad instead of using pencil and paper, was the day Tate caught on to double digit addition and regrouping. Math lessons were suddenly very interesting to Tate and he became motivated to learn. There were some great apps available for the ipad too. There were math games, spelling and vocabulary games, and even social skills lessons available. I loved that he was learning so much on the iPad!

Tate's ipad

So naturally, we bought Tate his own ipad. More time with the iPad could only result in more learning, right? After all, it is the going thing in the autism community now. Kids with autism need an ipad. The big drawback for us was how attached Tate got to it. If you know much about autism then you know that kids with autism often become attached to favorite objects or they can become obsessed with certain items or activities. Tate had to have his ipad under his arm at all times. He needed it right next to him every minute of the day; and at night… he slept with it. He lost sleep because he never wanted to turn it off. Taking it away from him meant he’d lose even more sleep due to anxiety and then be anxious and angry the next day too. Then there was the charger. Tate became obsessed with the charger. If the ipad charge fell much below one hundred percent then Tate insisted it was “low on battery” and needed to be plugged in. The charger and the iPad controlled Tate's anxiety and Tate's anxiety controls our home much of the time. 

And then... something even more detrimental ensued. Tate learned there were other kinds of games. You know, really fun games, the non-educational kind. Once Tate discovered those games, the educational games were no longer appreciated. And next came you-tube videos and the educational value of the ipad hit rock bottom.

But there is more. About a year after we got Tate his own iPad, I got a phone call from my credit card company. This experience is something we now refer to as the iTunes fiasco. You know those games that Tate had fallen in love with? The non-educational ones? I carefully monitored them, making sure they contained no foul language, were not violent, appropriate for his level of understanding, and above all else FREE for downloading. If I approved the game then I’d let him type in the iTunes password and download a new game quite often. Tate could not easily memorize his spelling words but he remembered that password, the placing of capital and lowercase letters, numbers, and all. It never occurred to me that my sweet and innocent ten-year old son would turn to a life of crime: identity theft. (Ha!) The customer service representative from Visa reported that they had seen some “unusual activity” on my account and they wanted to review some charges with me over the phone. Someone (guess who) had tried to purchase a game for $53.64 and Visa had denied it. In going over my credit card charges with me though, we discovered they had allowed dozens of smaller charges to be accumulated. Those charges added up to over $100.00. Tate has some savvy computer skills but is completely clueless in many areas. He does not understand the value of money. In Tate’s mind a one dollar bill or a one hundred dollar bill just mean he can buy a package of m&ms. And if you want money you just pull up to a bank and ask for it in the drive thru. So explaining credit cards to Tate would be like trying to explain how electricity works to someone like me…. You could try but it is not going to be possible. It was an expensive lesson but one I needed to learn I suppose. I had a talk with Tate about the password on iTunes. I explained that he could not use it without permission and all of those sorts of things. I thought he understood. He really seemed to understand and I think he did. Maybe. Sort of. He did not buy any additional games. He knew he did not have permission unless he asked and I okayed it. But did you know that some free games offer purchases within the game for things like adding more time to a mission or buying more accessories for your little avatars to use? Well, I did not and I certainly had not forbidden him from buying more time in a game or cute little decorations. He had no idea the money he was spending was not part of the game anyway. And although I felt like I was monitoring his games and spending an appropriate amount of time checking up on him and his iPad use, I did not really have a clue how things worked within those games. I had no idea that some games limit time and if you want to purchase more time then you can buy it: One. Dollar. At. A. Time. Tate did this over a three-day period: One. Thousand. Times. And I had no idea he was not just spending pretend money from the game to purchase things. 

Did you know there is a three-day delay sometimes between making an iTunes charge and you getting an email alert? Did you know that it sometimes takes three days for a charge to appear on your credit card?  By the time I got the call and all the alerts started pinging me. I was over twelve hundred dollars in debt to Visa for iTunes charges. My credit card company told me that I would be responsible for every single dollar and they would make no exception. I thought I was stuck. I called iTunes. It is hard to find but there is a phone number for iTunes. I explained my dilemma to the nice young man on the other end of the line and he ran off to find a supervisor. It seems I was not the first mother from the autism community they had ever heard from. They backed every single charge off my credit card but it had to be done one transaction at a time while I was on the phone line. Keep in mind most of those charges were for $1.00. It was a very long phone call and a very long evening. Before we hung up the phone, that nice young man walked me through rigging Tate’s ipad so he could no longer make “in app” purchases. This was a very good thing because the young man’s supervisor had warned me that they would not forgive charges like this a second time. In the future we would be responsible for those. For even doing this for us once, I would have hugged that guy right through the phone if I could have.

You think that is the happy ending to the story? Think again. We changed our iTunes password to make sure that there would not be an issue again. Not knowing the password stressed Tate for six months. SIX MONTHS! And stressed is not a strong enough word. It did not just upset him a little bit. It ruled his days and nights for six months. Six whole months. He talked about it constantly. He complained about it. He asked about it. He tried to guess it. He asked other people to ask me for it. He tried to trick me into giving it to him. He prayed about it in our bedtime prayers. He begged me for it. He lost sleep over it. No amount of explaining, talking, or even consoling Tate helped. It took about six months before he could come to terms with the fact that he would no longer know the password for iTunes.

Yes, he even uses it upside down

So, this is why I see Tate's iPad as both a blessing and a curse. We can’t live without it at this point. Oh we could survive but that six month spell of anxiety over the password would look like a walk in the park compared to losing the iPad. I recently suggested to Tate that he will someday need a new iPad because all his memory is used up on this one. He cannot find anything at all he wants to delete to free up some memory either. His battery is shot, probably from being plugged in sixteen hours a day while he obsesses about keeping the charge up. When I made the suggestion that we think about a new iPad, Tate went into panic mode. He does NOT want a new iPad even if it means he could have two. Honestly, if I could roll back the clock I’m not sure if we would have gotten Tate his own iPad. There are huge benefits, yes, but there are so many drawbacks. Before the messages start pouring in giving me all kinds of advice about how to limit Tate’s time with the iPad, I seriously doubt you have any ideas we have not tried. We’ve been there and done that. This ain’t our first rodeo. (Insert any other cliché you want to add here.) We have taken things away from Tate before. Read about his Blue’s Clues notebook phase: Unusual Attachments Of course if the battle (scratch that- I mean war) were worth fighting then we would fight it and not back down. Remember I did not cave on the new iTunes’ password. But at this time we are not choosing to make any changes. And if you have a young child with autism who has a history of becoming attached to things... learn from my mistakes. haha

Dear Autism,

Dear Autism,

I hate you. I hate you for taking my son’s childhood from him, from me. When he should have been absorbing information from his environment, you stood between him and understanding the world around him. When he should have been playing with his brothers and sisters he was at therapies trying to fight through the fog that you create in his world. When I should have been watching him grow and develop I had to watch him withdraw and struggle because you threw so many obstacles in his way. You cost us tens of thousands of dollars Autism. When my son should have been playing with toys, you had him lining them up and spinning them. When he should have been pretending, you had him staring at ceiling fans, obsessing over the vacuum cleaner, and looking at his reflection. When he should have been playing in the dirt, you had him washing and rewashing his hands. You stole his language when he was two. You stole the sparkle right out of his eyes. It was there when he was a baby. And then…. it was gone. You showed up and it was gone. You replaced that sparkle with an anxiety that I could not console. No child should have to endure all the anxiety you burden him with. I hate you Autism. I love my son, but I hate you.

But Autism,

Tate, age four

You did not steal everything. You did not steal his sweet spirit. You did not steal his smile. You did not steal his ability to communicate or his determination. You did not steal all the laughter and you certainly did not steal any of our love. I know you are strong and take more from some than others. Did you go easy on my son for a reason? Did you show up too late to take it all? Did birth order play a part? Was my son just too strong for you? Or did all the therapies start early enough and intensely enough to thwart your best efforts?

Autism, 

I hate you. Yet, not everything you have done has been bad. I have learned so much from you, not just acronyms and statistics, best practice therapies and how to bargain with public school staff. I have learned that little people with special needs are just as amazing and as easy to love as little people without special needs. I have learned that little people with special needs grow up to be big people with special needs and neither are scary or intimidating as I once imagined they might be. You have taught me that people with special needs are all just people, like the rest of us. You have taught me how to love bigger, stronger, harder, and deeper. You have taught me so much about compromise and understanding. My heart is fuller and my empathy skills have been magnified. In spite of the few good things you have done, I still hate you.

I hate you. Nevertheless, I must thank you for something Autism. You have introduced me to a community of amazing people. I cannot imagine what my life would be like having never met some of the people I know now. Many of these individuals have changed my life for the better. They have become some of my closest friends. Who knew my life would be richer for meeting so many therapists, advocates, teachers, families, and students? Maybe you did; but I still hate you.

Autism, 

Smith kids, 2002

You often ruin families financially. You make lives hard. You do your best to cause hardship and division, and ruin marriages. But sometimes, you take a strong marriage and make it even stronger. You tried very hard to cause jealousy and resentment in my son’s siblings. My kids stepped up to the challenge you issued them though. My kids help their youngest brother fight through the fog and confusion you cause him. You, Autism, took parts of their childhood too and robbed them of an enormousness amount of their mother’s attention. Perhaps I should thank you for that as well. My children are stronger and better because they know you. You have taught them lessons in empathy and compassion they never would have learned if you had not intruded on our lives.

Dear Autism,

I hate you. I hate you for taking my son’s future from him, from me. When he should be reading novels, he will be reading picture books and simple chapter books and struggling to comprehend what they are saying. When he should be learning to drive you will be standing between him and a drivers license. You will make dating impossible. When he is old enough to go off to college you will not allow it. My son’s peers will get jobs and earn paychecks but you will not even allow my son to understand the value of a dollar or how to count coins and make change. When my son occasionally speaks of getting married and having children I know you are there, always there, making his dreams of the future unrealistic. I hate you Autism. I love my son, but I hate you.

Autism,
My husband and I are making plans for retirement. You try to get in the way but we plan around you. We speak of the trips we hope to take and we know that we are not making plans for just two. We are making plans for the two of us, our adult son, and you. You will always be with us Autism. And when we are gone? One of those siblings that you have made so strong will carry on with their youngest brother and you. He will be loved and you will be hated then as well. I hate you Autism. I really hate you.

Oh, and one more thing Autism... If your goal was to make me bitter, you have failed. I live with a song in my heart and a smile on my face. My son makes me so happy and proud. All my children do. It is only you I hate Autism; but you do not rule my life or define who we are. You have taken so much from us but you cannot steal our happiness.

Smith kids, December 2014

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Pain, Communication, and Frustration

Tate, age four

I have often heard that people with autism feel things differently than we do. I do not know if this is true or how it could ever be measured and tested. However, I do know that my son Tate responds to pain differently than I do. Tate is my thirteen-year-old son, and Tate has autism. Tate cries occasionally out of fear or frustration, but I do not remember the last time he cried because he was hurt. I think he was still a toddler; but by age three he no longer cried when he was in pain. I know he feels pain but he seems to be able to manage his reaction to it. He has had many ear infections over the years and I just had to guess when to take him to the doctor. I have taken him when his ears were fine and I have taken him when his ears were horribly infected. I know when Tate has a sore throat because he drools and his voice sounds differently but until very recently he did not voice his discomfort. It is much like having an infant that cannot tell you when and where they hurt. Once, when Tate was in preschool, he stood on hot concrete with bare feet until the bottoms of his feet had blistered. The blisters were the size of quarters. He could not walk for two days after that but he never really complained about the pain. I know he felt the pain because he refused to walk but he did not cry or whine. Even when I know Tate is hurting, if I ask him he is almost always going to tell me he is fine. It is frustrating for me, and for him as well I would imagine.

One morning three years ago, when Tate was ten, Tate came to his Dad and said that his ear was hurting. I was still in bed when they came in to tell me. I was wide-awake instantly and so excited to hear about this ear pain. Of course I was not excited he was hurting but so excited that he was able and willing to tell us this time that his ear was hurting. What a difference this could make in our lives. The ability to communicate his needs would be life changing for us. And it has been; because since that day, he has  told us when he is in physical pain on several occasions. However, Tate still cannot talk to us about his feelings or emotional pain.

When Tate is upset, his face gets red and splotchy. He might stim a lot, or even hyperventilate, but he cannot communicate effectively about what is bothering him. I have to “read between the lines” usually. For example, if I announce that it will soon be bedtime, Tate might make a comment like, “I will play with this tomorrow.” and I notice his face is turning red. Then I have to guess: maybe he wants to finish this game tonight, before I make him go to bed. But, he won’t say, “I am almost done. Can I finish this game before I go to bed?” He won’t argue with me about bedtime as my other children would either. I would LOVE it if he would argue with me about bedtime. That would be a blessing in our world.

I have tried and tried to make Tate understand that he has to TALK TO ME so I know what he wants and what he is upset about. I believe he just doesn’t understand why I don’t already know. It is the whole “theory of mind” thing I suppose. Tate does not know that I cannot know what he is thinking and he doesn’t understand I am not having the same thoughts he is having. If Tate is going to tell me a story, he doesn’t set it up. He might begin in the middle, thinking that I already know the setting and the background that I need to know to understand what he is talking about. It is like reading a book and starting on chapter five when I am trying to understand something he wants to talk to me about. Often he gives up out of frustration. If I ask him questions he might become irritated. If I misunderstand and ask him to repeat himself, he will usually say, "never mind" so I do not get a second chance to decipher the message. It is similar to playing charades sometimes but I do not even get the motions. I get broken sentences and partial thoughts that I have to string together like a detective. A friend recently asked me some questions about Tate. I described how hard it was to communicate with Tate, especially when he is upset. She likened it to trying to communicate with someone while each of you are standing on opposite sides of a great canyon, both people able to see the other one but barely able to hear the other. I thought that was a pretty good illustration of how it feels to communicate with Tate sometimes.

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