Dumb? Lazy? I Think Not.

As the whole family celebrated a college graduation at Freed Hardeman University this weekend, I was reminded of some of the things that Tate and Sydney will not be able to accomplish. At a reception for the graduates, I spoke briefly with the college president. I told him that our fourth child will be starting college in the fall of next year. Jokingly, I asked him if the fifth child would be able to attend FHU at a discount. It didn’t occur to me to even mention the sixth child or the seventh child to him. I have no real expectations or dreams of college for them. Am I giving up too easily or selling them short? Am I out of faith and hope? I don’t think so. My hopes and dreams for them are just different. I am only being realistic. I cannot afford to set the goals so high they are unachievable. My two youngest cannot keep up with their peers, through no fault of their own. We focus on learning to count coins and do simple addition and subtraction, while peers are learning about division. We focus on reading picture books and answering a few questions correctly, while peers are reading chapter books and taking much harder tests. We focus on social skills because they have to be taught systematically, and we hope and dream that some of these simple skills we are teaching will be mastered and retained. 

My oldest two have now graduated from college. They are going on to do great things. One is a minister and is very talented in the field of graphic design. One is working toward a career in the field of law. I have two who are working to become nurses and their goals are reasonable ones for them. I am very proud of them. But, am I any less proud of these two who cannot yet count change or read age appropriate literature? 

Who is it that works harder? Whose accomplishments are loftier? Is it my twenty-two year old who studied hard and graduated from college? Or was it my developmentally delayed eleven year old, who after months and months of practice, remembered to make eye contact while he told the joke he had been trying to memorize? Perhaps it was my nine year old with a learning disability who got one hundred percent on her spelling test? THOSE were amazing victories!

Tate cannot clean his room without someone helping him. It has to be broken down into small tasks and one-step directions. He cannot put his own laundry away unless it is given to him in very small amounts. Large tasks are just too overwhelming and impossible for him to tackle. Kids like Tate and Sydney are often thought of as “dumb” or even lazy. I can testify to the fact that neither of my developmentally delayed kids are dumb or lazy. They both work very hard and they both are smart. They just do not process information as quickly as we do, nor do they think the same way we do.  Recently I saw a quote that said something along these lines:  "Autism is not a processing error. Autism is a different operating system." That sums it up. 

As my heart swells with pride over the great accomplishments of my college graduates, I will also be appreciating the advances made by my youngest two children. Those gains might seem so insignificant to most people, but not to me. You see, I watch my two youngest work much harder to accomplish so much less. Almost everything comes harder to them. People with disabilities, making gains in spite of their handicaps, and overcoming their challenges daily are also worthy of celebrating. Celebrate with me.  

My two youngest, so easy to love.

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

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Who's on First?

Tate's not sure if he likes
Snoopy or not.

Tate is very interested in Santa this year. He is insisting we all write letters to the man in red. He has asked his teachers to write letters, as well. They are so cooperative and have been playing right along. Tate can be VERY persuasive. I keep reminding Tate that Santa is just pretend and Tate doesn’t argue but I am not sure he “gets it.” So, this evening I had a long talk with Tate and Sydney about things that are real and things that are pretend. I had written a Bible lesson a couple of years ago called “God is Real” and tonight we went over the lesson together. First we talked about people we know. They are real. Then we talked, at length, about the real people of the Bible who did incredible things. We mentioned David and the giant Goliath, Noah and his huge boat, and Jonah in the belly of the whale. I made sure Tate and Sydney understood the Bible stories are true. Then we talked about some fictional characters like the three little pigs and the big bad wolf. We talked about dragons and unicorns and other pretend beings. I had created an activity so the kids could circle the “real” things and cross off the things that were not. Tate circled the word “God” and the image representing Jesus, as well as Noah and the ark. He crossed off the unicorn and the dragon but hesitated when he came to a fairy. He said “I’ve seen fairies on TV so they are real.” I said, “No, they are pretend just like other cartoon characters.”  Tate agreed. There was a picture of a super hero on the page and Tate looked up at me and asked “Are super heroes real?” I explained they were just pretend. (See my recent post called “Seeing Ghosts” where I explain how Tate became convinced the Green Lantern lives in our town.) The last picture was a genie on a flying carpet. Tate circled it. I said, “Tate, genies are just pretend.” He said, “Mom, you know Egypt is in the desert.” I agreed, wondering what that had to do with anything. He went on, “Genies live in Egypt.” I said, “Genies are just pretend.” He said, “Egypt is real and the desert is real and genies live there. They are real.” I can almost see the logic there. I said, "Tate. Cross off the genie" and he did comply but I don’t think he changed his belief. Haha When Tate is convinced he “knows” something then he cannot usually be persuaded to reject that belief. THAT is one of the hardest things we deal with. I've had a doctor call it "rigidity of thinking."    

It is very hard to communicate with Tate for several reasons. He doesn’t process very fast so he gets “lost” in all the language if you talk fast or long. He doesn’t understand figurative language so we have to be careful not to say anything he could misinterpret. If we really want to explain something we have to explain it slowly and systematically, using concrete thoughts. Also, he cannot be preoccupied or distracted by other things or other thoughts. He often goes around in circles and it gets comical to me. It sometimes reminds me of the old comedy routine “Who’s on first.” The following is a conversation we had yesterday: 

Me to Tate: "Do you want some milk?" Tate: "I had water." Me: "Do you want some milk with your waffle?" Tate: "I'll put this cup by the sink." Me: "Do you want me to put some milk in it?" Tate: "I drank water in this cup." Me: "But Tate, the water is all gone so now you can have milk in that cup if you want." Tate: "I need a different cup. This one had water in it." I took the cup from him and poured milk in it.  He surprised me and drank it without an argument.

Inserted below is part of a blog post from March. I believe it is from my very first post. I had documented a conversation that day and want to share it again here. If you’ve been reading my blog long, you might remember it. You can see the similarities in the two conversations and understand how hard it is to get Tate to focus on what you want him to when trying to explain something. It can be quite frustrating.

…this week, we began an organized effort to teach some figurative language. Example…Tate noticed a moth in the house and was obsessing about it. Shawn (Dad) got him a flyswatter and said “Here keep this handy.” Me: “Tate, do you know what it means to keep something handy?” Tate: “Kill that moth.” Me: “To keep something handy means to keep it close by so you can grab it. What if I said that I need to blow my nose and the Kleenex were handy?” Tate: “You can’t kill a moth with a Kleenex.” Me: “Tate, don’t think about the moth. We’re talking about the word HANDY. It means to keep something close by so you can use it.” (I inserted two more examples of ‘handy’ in a sentence.) Tate: “Will you kill that moth?”

Back to the present (2012):

This morning Tate was stuck on the subject of our trip to Tennessee next week to watch his oldest sister graduate from college. There is no changing the subject or trying to get his input on any other topic when he is stuck. Unless, of course, it would be a subject he would find even more appealing. He is often dwelling on his favorite shows or his favorite characters from his favorite shows and he cannot seem to think "around" those images in his mind. Because of this Tate learns very slowly. Can you imagine trying to learn something you were not interested in from someone you could barely hear if there was a loud video of your favorite movie playing on a headset that you had strapped to your head? I think that would be similar to what Tate deals with. How can he listen to a lecture on rocks in science class when he is replaying the "Toy Story" movie in his head and he cannot shut it off?    

I have a very dear friend who parents a child with severe autism. She inspires me to be a better parent and she is truly a hero in my book. Once she told me how brave she considered her son to be. She described HIM as a hero, dealing with things that are incredibly hard to make very small gains. I think of that often and I am so glad she gave me her perspective. It makes me think twice when I get a little frustrated that Tate will not (or cannot) focus and attend to what I would like him to. It makes me think twice when I get a little discouraged that Tate cannot remember which drawers to put his laundry away without supervision. (Yes, there ARE visual labels on his drawers.) Tate works harder to learn a little, than most of us would work to learn very complicated things. So, doing third grade math in the fifth grade is not something to be dissatisfied with, but something to celebrate. I hear often that we should not mourn the things our special kids cannot do, but take joy in the things they CAN do. Those words are truly words of wisdom. 

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A Sparkling Personality Has A Price

When my first six babies were infants, they were held for hours upon hours. They were talked to, sung to, cuddled, and snuggled often. Almost every noise they made was acknowledged and responded to, if not by me, then by another family member. My babies were socially educated from the minute they were born and they developed personality very quickly. Of course, the first five babies were typically developing and soaked up everything around them like a sponge. Tate did not. He could not. His brain was not able to understand much of the communications or the social world around him. I saw some of the evidence of this early on and one thing that was different about Tate from infancy was that he did not like to be sung to. He did like to be cuddled, held and rocked but he wanted silence. Unlike my other babies, he did not enjoy hearing mama sing. My voice isn’t the most beautiful voice but I can carry a tune and my other children have enjoyed being sung to immensely. Not Tate.  The louder I sang, the louder he cried, so I stopped singing and learned to rock quietly. If he was hurt or upset and I gently said “shhhhh” as I tried to comfort him he took great offense. The “sh” sound was NOT allowed either. I had to warn people not to “sh” Tate and once in a while one of us forgot and he would wail. It was one of the many quirks we lived with and I chalk it all up to autism. 

This blog post isn’t really about Tate and his quirks today though. I have been thinking a lot of about the “what-ifs” concerning Sydney lately. Sydney laid in a crib for most of her first ten-and-a-half months. She was not talked to, sung to, cuddled or snuggled. She was not carried around. She was changed and fed on a schedule with a bottle that was propped. In an earlier post I discussed her feeding schedule and how I changed that immediately upon taking custody, thus helping her stomach issues tremendously. What if, she had been fed appropriate amounts for her small stomach in much more frequent feedings? What if she had been changed as needed, bathed more often, not tortured with the itch of scabies, talked to, held, and carried around sometimes? What if she had not been neglected? So many of Sydney’s behavioral issues are blamed on the diagnosis of Fetal Alcohol Syndrome, and probably rightly so. However, would the FAS be so severe if the neglect had not been there? I will never know for certain because I will never get to go back and give Sydney those hours and hours of interaction that my first babies were given. Would Sydney have been much like Tate: unable to understand, in spite of all the attention? After all, her brain had been damaged by alcohol in the womb. Of course I believe Tate would be so much more handicapped if he had been in Sydney’s situation for the first ten months of his life. So therefore, the reverse must be true. I doubt there are too many people who would argue. We saw how fast a little attention could result in a lot of progress before we had even finished the adoption process. 

When we were in Russia to visit Sydney in October of 2001, one of the first things we noticed was her lethargic personality. I said more than once to Shawn “she doesn’t have any sparkle behind her eyes.” We assumed she had brain damage but did not know much about FAS. We did ask if her birth mother had consumed alcohol and were assured that she had not. The second time we visited Sydney in the orphanage we were with her in a playroom full of children. Sydney was probably the youngest in the group and she was not usually included in playgroups. That was for the older children who were crawling and walking. At eight-and-a-half months Sydney wasn’t sitting up, crawling or even cooing or jabbering. She was silent. When she cried, she just hummed. During that visit we met a girl working at the orphanage who was from Germany and could speak English very well. I was able to ask her some questions and she asked the nurses and interpreted their answers for me. We had noticed a baby, close to Sydney’s age or a little younger, sitting in a bouncy chair across the room. That baby was very interested in her surroundings, trying to make eye contact with anyone who would look her way, and she was making a lot of happy noises. I asked the nurse why there was such a difference between that baby and Sydney. She told me that Sydney had never had a visitor, while the other baby had a mother who visited her and fed her a bottle every evening. THAT baby had known a mother’s love. Sydney had not. We told Sydney’s doctor later that we were concerned about Sydney’s lethargy and the fact that she was not being given any individual attention. He told us if we left him one hundred dollars he would hire someone to hold Sydney and play with her for an hour a day until we returned for her on our appointed court date, two months later. Shawn immediately handed the man a $100 bill. When we returned in seven weeks to take Sydney from that place, she was a changed child. She had personality that we had not seen before. She was active and much more engaging. She also had seven new teeth. When we had visited her two months prior she had none. She still didn’t make any noise other than a hum but she had some “sparkle.” Shawn and I will always say that it was the best one hundred dollars we ever spent. Of course, that fee was a drop in the bucket, compared to all the other adoption costs but it was one that jump-started Sydney’s personality and slowed down the effects of all the neglect.      

If only those first ten months of learning and growing emotionally and intellectually had not be stolen from Sydney. If only she had been handed to a mother who would love her and nurture her from day one. Every baby deserves it. 

Sydney, before we added the "sparkle."