looking for Big Foot

In my last post I told you about the time Tate saw a ghost and had no trouble accepting the “fact” that ghosts roam freely in our world.  If he sees it, then it exists.  End of story.  Not being able to separate fantasy from reality, or understanding the motives of others and why they would pretend, has him believing in many costumed characters.  Tate doesn’t have any trouble believing Santa is real and his reindeer fly or that muppets are alive and well.  I have to explain to him what is real and what we are just pretending about “for fun.”  Sometimes I get through to him and sometimes I think it goes in one ear and right out the other. 

 

One of Tate’s favorite shows is iCarly.  He watches the reruns over and over.  In one episode, the iCarly show tries to find Big Foot.  At the end of the episode, Big Foot drives off with the RV.  Tate loves that part.  We have also seen Big Foot star in a few commercials for beef jerky.  Tate is convinced that Big Foot is alive and well and probably living in the trees around our house.  He isn’t frightened in any way.  He wants to catch sight of him.  Several times Tate has told me that we are going to go into the woods after dark and find Big Foot.  When Tate decides something is going to happen it is very hard to alter his plans.  It is not like redirecting a small child and distracting them with another activity.  He obsesses about the thing he wants to do and tries everything he can think of to make it happen.  His announcement usually begins “Hey Mom, on Friday night, we will go find Big Foot.”  I never know quite how to respond.  “No, we will not” won’t get me anywhere with Tate, and “Big Foot is not real” will not even be heard.  So, I usually just take advantage of the fact that he wants to converse with me.  Since conversation skills are few and the motivation to converse is rare, I go with the flow.  I might ask, “Where will we look?”  Tate will explain to me that Big Foot lives in the woods and we can look in the woods around our house or we could drive to some other wooded area if I like.  Then he will probably caution me that we will need to be careful if we drive anywhere because Big Foot has been known to steal people’s cars (the iCarly episode has taught him this).  I ask him what we will need to bring and he will tell me that we only need a flash light and some biscuits.  This summer, one of his siblings convinced him we would probably need some bait and Tate believes Big Foot would like biscuits.

 

I do a lot of things for Tate, but I am not about to go traipsing around in the woods at night looking for Big Foot.  I have tried several methods of convincing Tate that looking for Big Foot would not be a good idea.  Once I told Tate I wouldn’t be able to help him hunt for Big Foot because I’d be too afraid.  I asked “What would we do if we found him?”  Tate’s response?  “Shoot him.”  Yikes.  I guess we add a GUN to the list of things to bring now.  HELP!         

seeing ghosts

Tate, age 3 ½ 

Tate thinks very literally and this often causes him to misunderstand the world around him. People with autism also struggle with separating reality from fantasy. One of the first times I realized how handicapped this made Tate was when he was around three or four years old. Tate and I were walking in a building on Kansas University’s campus and we came face-to-face with a woman wearing a hijab with a veil covering everything except her eyes. As we walked by her, Tate nonchalantly said “oh, a ghost.” He didn’t ask any questions. There was no alarm in his voice, no double-take, or any kind of disbelief at all. He called it like he saw it. He saw a ghost walking down a hall. End of story. 

A few days ago, we were driving through our small town and Tate saw a black sports car trimmed in lime green parked in a drive way. Tate said, matter-of-factly, “The Green Lantern lives there.” No big deal. A super hero lives in our town. One plus one equals two, after all. Like that “ghost” and the Green Lantern, many other costumed characters have been accepted by Tate as true to life personalities. I think this, and a lot of the other difficulties Tate has interpreting his world, can be traced back to the theory of mind issue. Theory of mind is the ability to understand that other people have thoughts and feelings too and people are not always thinking and feeling the same way you are. It takes theory of mind to be able to empathize with others, read body language, pretend, and understand a lot of humor. Tate cannot see why anyone would have a motive to pretend to be anything they are not. This is the part that can get a person with autism in a lot of trouble when mom is not there to watch out for them anymore. Typically developing children gain some street smarts at a fairly young age. They learn to “read between the lines.” They learn that sometimes people tell lies, pretend to be things they are not, and manipulate others so they can get what they want. Typically developing kids also learn to see some gray between all the black and white rules we live by.  Kids with autism don’t often learn all the exceptions to rules and gain the street smarts. People with autism can be taken advantage of very easily. 

Seeing a ghost and believing a car in town belongs to a super hero are things I can chuckle about but it makes me wonder how far it could go. We see wildlife in the yard quite often. A whole flock of turkeys walked across our yard today.  If a tiger sauntered across the yard while Tate was outside swinging I wonder if he would come inside to tell me or just casually say “hmmm, a tiger” and keep on swinging.

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Holding onto a "live wire"

My last post mentioned how hard it was to carry Tate when he was little. Here's the link if you are interested in reading about that: A Sack of Potatoes It was equally as hard to carry Sydney but for totally different reasons. Even holding on to Sydney was challenging. She was so hyperactive I could barely keep her from jumping out of my arms. She had no reaction to pain so she didn’t mind if she fell head-first into the floor either. She would spin around and around in my arms so I had to hang on to one of her legs at all times. Occasionally she would throw herself backward, without warning, so I always had to be prepared for that as well.  

Sydney, One Year Old

I had read that a baby who is neglected learns to find ways to stimulate themselves so I knew we’d probably see these kinds of things in Sydney. When a brain is not stimulated it becomes damaged, thus the rocking and other behaviors are used by a baby to keep themselves “entertained.” It is like self-preservation. Unfortunately, the rocking and other behaviors do not suddenly stop when the baby is removed from the neglect. We had to teach Sydney that she no longer needed those behaviors. I provided her with lots of toys and activities. The house was definitely not boring with six older brothers and sisters. I sat beside her and put my hand on her back and said “no rocking” anytime it began. If I walked through the room she was in and saw her rocking, I touched her on the shoulder, reminding her constantly, “no rocking.” It got old but I was determined. Finally, she seemed to outgrow it or maybe she just didn’t need it anymore and it stopped. Throwing herself down violently from a sitting position also stopped over time. I tried to keep her on a soft surface, in the play pen or with pillows behind her so the crash to the floor wouldn’t hurt as badly in the meantime. Those crashes were so hard to watch. Occasionally, she knocked her head on the floor hard enough to stun herself. 

When Sydney came to us, she also sucked two middle fingers. It was adorable. I read and heard from many people that thumb sucking should be stopped at an early age because an older child was much harder to break of it. It was so cute while she was little but I knew that it would not be cute when she was older. I also figured Sydney would have enough to deal with when she started school and sucking on her fingers would be one more thing to cause her to look different than her peers. So…. I began that battle once the rocking had stopped. I felt mean and rotten asking her to take her fingers out of her mouth constantly. I read all kinds of remedies. I didn’t like any of them. I wasn’t going to put hot sauce on my baby’s fingers! During waking hours I was usually able to keep Sydney busy enough to keep the fingers out of her mouth but naps and night time were much more difficult. I tried pulling a pair of her brother’s long socks onto her hands and pinning them at the shoulders.  That worked usually, although sometimes she was able to wiggle her hands out and find those fingers. She really didn’t seem to miss sucking on them when they were not available though. When I look back on those days I still feel so mean, however I would do it again. There is a child I see a couple of times a week this year when I volunteer at Sydney’s school. The child often had two fingers in the mouth. A seven-year-old looks very immature when they are sucking their thumb or fingers during a spelling test. 

Sydney’s had a few other habits we’ve had to break. When she came to us, she picked at the ends of her fingers and toes until they bled. Can you imagine being so bored in a crib that you had resorted to causing yourself pain just so you would feel SOMETHING? I cannot. Keeping her feet covered and putting the socks on her hands helped keep her digits healed. Because I bite my nails myself, I have not been a good example in this area. I feel like a hypocrite anytime I ask Sydney to leave her fingers alone. She rarely causes them to bleed now. Sometimes when she is stressed I see her fingers suffer though. I have blogged before about Tate’s stims and said when we reduce or eradicate one, he often replaces it with another. Sydney does this too. While trying to eliminate the finger-picking, she began chewing on her hair. She came to us with short hair but it had grown quite long in a short time. Her hair was so pretty when it was clean and combed. I loved it long and tried everything I could think of to help her remember to keep it out of her mouth. She would hide and chew on it and she always sucked on it while she slept. She replaced her finger sucking with hair chewing. I had to cut her hair and we still keep it short. As soon as it gets long enough to reach with her mouth, it starts all over again. Just this morning I had to give her a shower and wash her hair before school because I couldn’t get a comb through the sticky hair. 

There are other bad habits and some of them are awful, while some are sort of endearing. I have blogged before about Sydney’s hoarding and the hiding of food. (See my blog post called Hoarding) Then there is the love of mulch and the visual stim she has. She brings every toy, block, pencil, or book she picks up, right up to the tip of her nose so she can spin the item right in front of her eyes. Many people have asked me why Sydney smells everything she picks up. It might look like she is sniffing things because her nose is right there but it is actually a visual thing. She picks something up by the edge or corner, using the tips of two fingers, and barely holding on to it at all, she brings it up to her face and spins it back and forth a couple of times. It looks very ritualistic. If she is building with legos, each and every lego comes up to her face. If I ask her to stop then she is quickly done playing legos. She seems to NEED to do this, much like Tate NEEDS to whisper the last few words of his sentence when he is finished talking to me. Obsessive Compulsive Disorder you say? Probably, says the doctor, at the very least, some kind of anxiety disorder. 

Note:

In my posts I often refer to Tate and Sydney’s “stimming” or “stims.” “Stimming” is short for self-stimulatory behavior(s) and are almost always present in a child with autism. It is also called stereotypic behavior.  It might be finger wiggling, hand flapping, rocking, spinning something, or any other repetitive movements. It could also be a vocal thing, like repeating words or squealing. People with autism might stim when they are bored, excited, anxious, or uncomfortable. These behaviors are not exclusive to people with autism. Do you tap your pencil, bounce your leg, bite your nails or twirl your hair? Those are also stims. A stim is not always a terrible thing that needs to be extinguished. An infant who sucks his thumb may need the stimulation while he is small. When he gets older, the thumb sucking will get in the way of activities, possibly spread germs, and look odd to his peers, so his mom will work on replacing the thumb sucking with something more appropriate. A child with autism gets caught up in a stim and uses it to shut out everything else. The stim takes away from learning opportunities and social interactions. Most of the stims Tate has had over the years have been things that needed to be minimized or eliminated.

Tate’s stimming began when he was around two years old when he lost his language and regressed. It is a result of autism, while Sydney’s stims are probably a result of neglect and an anxiety disorder.

To learn more about stimming see my post called Echoes from April 19, 2012.

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A sack of potatoes

When Tate was an infant, he behaved much like my other babies had. Occasionally I would scratch my head over something that seemed odd, but there were no sirens going off in my head or anything like that. I do remember Tate getting very upset when I changed his diaper from day one. The other babies had cried sometimes when I changed them but not to the degree Tate did. He got panicked anytime I had to remove his clothing or take the diaper off. I thought he was feeling unsafe or cold but I had no idea that these kinds of sensory issues could be indicators of autism. 

Tate never learned to nurse, although I had planned to feed him as I had my other babies. He just didn’t want to put forth the effort it took but he would take a bottle. I eventually gave up and used the bottles. I saw him as a baby and as a toddler ignore a growling stomach many times if it took too much work to satisfy his hunger. Once when he was a toddler and had a sore throat, he went for three days without eating and two of those hardly drinking anything. Just before I was going to take him to the ER and request an IV, he began to drink again.

Tate cooed, smiled, laughed and jabbered on time. He later learned words and began to talk on time.  He actually had a pretty good vocabulary with some big words before he began to lose them around age two. As a matter of fact, Tate learned, almost, too quickly and was interested in learning things that were not age appropriate. He learned the alphabet when he was very young and he recognized numbers and the spelling of his sibling’s names as a toddler. 

One indicator of autism is that a child will not play with toys appropriately. That might have been one of the first big things I noticed. Had I known that was a symptom of autism I would have began to suspect something a little sooner than I did. Tate enjoyed ribbons and he loved the ties on his crib’s bumper pads. He would play with them instead of the toys I gave him. My mom sewed some long strips of material so he could have them to play with outside of his crib. We thought it was funny, sweet, a little quirky, but still no sirens were blaring in my head. Later, when he could crawl, I would often find him running his fingers up and down an electric cord. His favorite cord was on the vacuum cleaner.  The vacuum cord was round instead of flat. Tate was terrified of loud noise and hated the vacuum if it was turned on but he could not resist the vacuum if it was quiet. I used to say he had a love affair with the vacuum. There were a couple of times I remember shaking my head and saying “maybe he has autism.” The only thing I knew about autism was that kids with autism had strange interests and performed repetitive behavior. It was not until Tate was two and a half that I learned what autism was and wished I had paid attention to what must have been my uncomfortable feeling that something was wrong. Saying “maybe he has autism” was probably my way of voicing my concern.

One of the most unusual behaviors Shawn and I noticed and discussed, long before we knew it meant anything at all, was Tate’s limpness. He was just “there” when we picked him up. He didn’t hold on, he didn’t move to situate himself on our arm. He didn’t lean into us. He didn’t even adjust his weight or grab hold of us when we went around a corner. We had to do all the work. We wouldn’t have known this was “different” except we had five babies before him. We knew that babies hold on to a shoulder or lean into the one carrying them and they are not nearly as hard to carry as Tate was. He was like a sack of potatoes; and a sack of potatoes is a lot harder to carry than a typically developing baby or toddler. Tate didn’t seem to have a sense of WHERE he was in space. He also didn’t figure out how to move his body to make himself (and others) more comfortable. Not that he would have CARED about making others more comfortable because he also was not learning that people around him were not having the EXACT same thoughts and feeling he was having. But THAT is another topic for another day.

That spatial awareness has plagued us for a long time. You cannot learn to ride a bike if you cannot balance yourself and adjust to movement. Then there is something as simple as giving a hug. Hugging Tate is like hugging a big beanbag. He just doesn’t know what to do with his arms and if we can get him to put his arms around us he doesn’t put any oomph into a squeeze at all. He does try because he knows that hugs make me happy but he is almost eleven years old and I’ve never really gotten a good hug from him before. It is like he is trying to hug me but his arms have been shot full of Novocain so he cannot make them do anything but hang. He might want to exert some kind of pressure but he doesn’t know how much force to exert because he doesn’t feel things the same way we do. One of the best presents I could ever get in this lifetime would be a hug, a real hug, from my boy Tate.

Another post you might like:  Look into my eyes

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Would I do it all again? Will you be surprised at the answer?

I have been hoping to find other parents that blog about Fetal Alcohol Syndrome (FAS) so that I could learn from their experiences. I love to share what has worked and has not worked with my kids so others might benefit from my experiences, as well. It can save a lot of time when you are not “reinventing the wheel” and when many minds are looking at the same problems, there are often many solutions offered that one person alone might not have thought to try. At the very least, I thought finding other bloggers who are willing to share, would help me to see that others are surviving FAS and I will too. Encouragement is what I need the most to keep on doing what needs to be done. Sydney is a lot of work and I sometimes get discouraged. Last night I found a blog called “When Rain Hurts” written by the mother of a boy named Peter, adopted from Russia. He has FAS and his parents have been through far more than we have.  She is a brilliant writer and her blog is going to be published as a book. The link is http://whenrainhurts.wordpress.com/

I found Sydney had many things in common with Peter and I have many things in common with his mother. She said she was left feeling inadequate after reading many books about autism and adoption. I am often left wondering if some authors are being truly honest when they say they have completely accepted what they cannot change or that they embrace their child’s disability and would not change anything. Then I suffer extreme guilt because I CANNOT feel that way about my own children and their disabilities.  I do not embrace autism or ADHD or FAS. I HATE autism, ADHD and FAS. I would do almost ANYTHING to change those things about my children and we have worked hard to minimize the symptoms of these disabilities. We spend a lot of money on medications that help and a lot of time on interventions.  I am not bitter but I hate the disabilities my children have. I can see the people they would have been without their disabilities and the adults they will become because of their disabilities. It is frightening to think about the things they will struggle with, the friends they will and will not have, and the kind of care they will receive when I can no longer care for them.

I have read many books about autism and met many parents of children with autism in the past few years. Several of them say that they would change nothing about their child because the disability is part of what makes them who they are. I have a hard time understanding that. I would do anything, give anything, or give up everything if I could “cure” Tate’s autism or Sydney’s FAS. One mother, who told me she would not eliminate her son’s autism even if she could do so, had her son enrolled in a very expensive discrete trial program at the time. Did she want to minimize the disability that she had just told me she cherished as part of who her son was? I had to bite my tongue hard that time. See my  post called: Celebrate Autism? for more about this. 

Once in a while people ask me if I would do it all over again. Would I still adopt Sydney? Honestly, I think I would. I think I would because I love her with all my heart. I think I would because I cannot bear to think about where she would be or what she would be doing if she were still in Russia. I think I would because she has a soul and I want to teach her about God and His plan so she can go to Heaven. I fear that someday my answer will change. I've read that thirty percent of people in prison had birth mothers who drank. That scares me. If a person has brain damage that keeps them from being able to make good decisions, how are they to obey laws? If a person has little or no impulse control, how can they be kept safe? 

No one has ever asked me the same question about Tate, perhaps because he is not adopted. If I could turn back the clock, would I still have planned one more baby, the year before Tate was born? No, I would not have. There, I said it.  I would not have conceived a baby, knowing he would have autism. Autism has drained me emotionally, mentally, physically, and financially. Having said that and before the hate mail starts pouring in: I adore Tate. My world revolves around Tate. I am not a patient person, but I almost never lose my patience with Tate. He brings out the best in me. He gives me a lot of happiness and he has taught me a lot of things. Although I have been drained in many ways, Tate and autism have helped me to grow spiritually. I see things much differently than I used to and I am a much better person than I was before Tate was born. The main reason I would not have purposely conceived a baby knowing he would have autism doesn’t have as much to do about what autism has done to me, as it has to do with what autism has done to Tate. I see him struggle to fit in and know he will never be able to understand the world around him.    

I’ve said it before and I will say it again:  The phrase “Everything happens for a reason” is one of the most ridiculous things I have ever heard. God does not give people autism and God does not cause women to drink so their babies will be born with a lifelong handicap. That whole idea is absurd. It is true that we can make the best of a bad situation and grow stronger because of it but there is no divine reason a child is born with a handicap. (My "rule" #11.)

  

None of the above thoughts or feelings really matters in the end. Both kids are here. Both kids are mine. Both kids are handicapped. Both kids are loved. Both kids bring me and others so much joy. I really do love my life. 

We have seen so many good things happening. We didn’t know how much progress Sydney could make and she has already overcome some of the problem behaviors we worried the most about. Something that concerned us a lot when Sydney was a toddler was her inability to differentiate between family/friends and strangers. She was completely comfortable in the presence of a crowd of unfamiliar faces and she sought the attention of complete strangers. Long after she should have bonded with us, she would reach for people in stores, wanting to be held. I knew if someone had picked her up and walked away with her she would have never looked back. She would not have missed us at all. She did not seem to understand where she belonged or that she needed me. Anyone could step in and take care of her needs and she would not have noticed her mother was not around. I’m not sure when she finally understood or cared who she was with. It probably happened very gradually and I was too busy worrying to notice. In my opinion, her attachment took far longer than it should have but it finally has happened. She is too trusting still but she does now have the same kind of reactions my other children would have had in new settings or around unfamiliar faces. She even acts shy occasionally and that is not something we would have seen when she was a toddler or a preschooler.

I’ll end with a couple of my favorite Sydney-isms from this week. On the way to school, Sydney saw a dog beside the road. She said "Mom, on your way back home, stop and ask that dog what it is doing." (Yes, she was serious.) The same morning, right before we left home she asked her dad "How much is 36 minus 6?" He said "30". Sydney replied "Nope 240. That one must be too hard for you Dad." 

If you enjoyed this post and would like to see a more current one about these two great kids, click this link: Mommies Don't Give Their Kids Away.

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