39 pounds and gaining

This is a follow up to the last post called "Watching Sydney's Weight" so you might want to read that post first. 

Sydney earned her ten stickers in ten days and got her livestock truck a couple of nights ago. She is thrilled and so am I.  She weighed in at 39 pounds last evening. Sydney weighs herself almost every evening after her bedtime snack and comes and tells me what the scales say. Usually she has the numbers mixed up and says something like “eight-three point five” or “thirty eighty ninety-nine.” When Sydney came to me and said she was 39 pounds I doubted her and followed her to the scales. I had been excited we were creeping up past 38 and a half pounds at the beginning of the week. Of course, weight can fluctuate a little so tomorrow we may be back under the 39 mark. However, we have been stuck at 37 and 38 for a long time so anything close to 39 is looking pretty good. The doctor will be pleased if this continues. I believe it is the 300 calorie bedtime snack that is making the difference, just as the doctor said it would. I don’t think we have made our goal of 1600 calories a day, more than twice since our trip to the endocrinologist. THAT is a lot of food for a tiny little stomach to hold. I have made a huge effort to push bread, pasta, meat and desserts and have limited the vegetables and low calorie snacks. It is getting easier for me to say “no” to the request for raw carrots or green beans and hand her a brownie instead. haha

Sydney had a bowl of vegetable soup for lunch today after a week of going without her favorite lunch. She LOVES vegetable soup. She misses her vegetables the way I would miss my Dr. Pepper if I had to cut way back. I have found several high calorie snacks Sydney likes now. Little Debbie’s cakes are at the top of the list, along with pudding cups and pecans. It doesn’t take very many Oreos or peanut m&ms to get to 300 calories either and she loves those. Sydney and I have made a couple of trips to the grocery store in search of new snacks to try. Reading the labels is something I have done for years for myself but I was always looking for lower calorie foods, not higher calorie foods. I know a lot of people who would like to “trade” weight problems with Sydney, and I am one of them.  haha

I may actually be able to retire the 4T shorts at the end of this summer. The 4 slims are getting just a little tight too! I never had a kid wear the same shorts three summers in a row before. Sydney's wearing them all out.  I tried 6 slim jeans on her today. She'll need them for the length and we'll just have to cinch them up really tight. Thank goodness for the adjustable waists in pants these days!   

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It DOES hurt!

I've been up for a whole thirty minutes this morning and I have not stopped smiling. Ironically, my smile is a direct result of Tate's discomfort. Please, if you have not read my previous blog post “Does it hurt?” from April 25, 2012 then take a look.

Tate is an early riser (and that is an understatement.) Many people with autism require little sleep, or perhaps it is just that they struggle with chronic insomnia. Tate is almost always up by 6:00 and sometimes it is 5:00 when I hear him up. Most mornings Shawn is up early too. I am NOT an early riser and that is an understatement. I think 9:00 would be the perfect time to crawl out of bed. Of course, this rarely happens. The past couple of years I can leave Tate in a room unsupervised. Sydney is another story. There is no telling what she will get into or break if left unsupervised. But I did not start this blog post to talk about how much sleep I am getting…..

This morning, Shawn woke me up earlier than I like with the news that Tate’s ear was hurting. I was wide awake instantly with questions. "How do you know?" “Did Tate TELL you that?” TATE TOLD SHAWN THAT HIS EAR WAS HURTING.  This is a HUGE milestone. If you read my earlier blog post “Does it hurt?” or if you know us well, you will know that Tate has had MANY ear infections in his life and he has never complained of pain. He won’t ever tell us when he is hurt or sick. We have to guess. 

The ear pain this morning is from swimmer’s ear, I am certain. We put in an above-ground pool this summer and spend hours in it every day. Sydney has had swimmer’s ear this summer and got drops for it last week. I have been wondering if Tate had any trouble with water in his ears but he wouldn’t talk to me about it when I inquired. Levi and I have been having trouble getting all the water out of our ears sometimes but our ears have not hurt. 

Tate’s favorite thing to do in the pool is flip or somersault. He practiced for days and sometimes will somersault over and over, until I wonder if he is using it as a repetitive behavior to stim. I give him the benefit of the doubt and hope he just loves the fact that he mastered a new skill. I like to use denial sometimes to help me through the day. haha The somersaulting gets water in my ears worse than anything else so I don’t do it much. Tate is doing a lot of really cool things. He loves to go underwater and Shawn and I have marveled about how long he can stay under. I think it is also because he can ignore pain to a degree. I cannot stay under as long as Tate can. He could not go under much until he learned to use a face mask. Levi and I have to use a nose clip or a facemask to swim under water. Tate was not interested in trying on the facemask at the beginning of the summer. Once he decided to try the facemask he wanted to spend all his time under the water. He is having so much fun in the water. Tate has always been big for his age and heavy. This past year he got a lot taller and slimmed up but this summer he has actually started to look skinny. I think all the exercise in the pool has helped. 

In the pool

If you see me around today, note the smile on my face. It is not actually because Tate is hurting, but because Tate acknowledged that he is hurting so someone could help him with it. Maybe this is just a beginning and Tate will be telling us in the future when he hurts or feels sick. I am on cloud nine. 

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Watching Sydney's Weight

Sydney’s premature birth, hyperactivity, exposure to alcohol in the womb, neglect for the first ten months of life, and genetics, all play a part in her physical make-up. She was five and a half pounds at birth, and only sixteen pounds when we brought her home at 11 months. She is eight and a half years old now and still at the bottom of the growth chart, for both height and weight. It baffles me because she eats so much food. She snacks all day long and eats huge meals. She does prefer vegetables and fruit over bread, meat and sweets though. She cannot have much dairy because it hurts her stomach, as she is lactose intolerant. 

One of the medications Sydney takes has a side effect that can cause her appetite to be suppressed but I do not see any evidence of a suppressed appetite. She eats now as she did before we began medications. She had a hard time gaining weight before the medications and doesn’t put on weight now either. But, the medication is taking the blame from the doctor that prescribes it. I live in fear of losing the prescription and the 12 hours of calm it gives us a day. As I have blogged about before, the difference in a medicated Sydney and a Sydney off meds is tremendous. She is so much easier to live with and to love when she is not jumping up and down, barking, laughing wildly, knocking things off shelves, and touching everyone/everything in reach. I cannot even describe all the differences Sydney's medication makes in our lives. It helps Sydney to learn, play, and focus, and gives my other children a sibling they can enjoy and a mother with time for them too.  (See my earlier blog post entitled "It's a mad, mad world for a better description of Sydney off her medication.) 

Sydney has weighed in at 38 pounds for a long time now and her doctor has become so worried about her lack of weight gain that she sent us to a Pediatric Endocrinologist this week. We had Sydney’s hand x-rayed prior to our visit so the Endocrinologist could look at Sydney’s “bone age” with us. He also looked at the genetic testing we had done when she was a toddler while we were with him. The previous tests eliminated some of the tests he would have ordered himself. The visit with this doctor was very educational for us. He ordered a blood draw so he could make sure Sydney’s thyroid was working well and she has enough growth hormone working for her. These things could have been damaged by her exposure to alcohol in the womb. 

The Endocrinologist said he purposely does not look at a patient’s actual age before he meets them so he will not be influenced. He likes to guess the age before he knows the age. He guessed Sydney to be about five or six.  This is what most people guess when they meet her, based on size and her behavior. He said Sydney’s x-ray showed a five or six year old, as well. If he uses the growth chart for a five and a half year old, Sydney is in the 25^th percentile on height and weight instead of in the third percentile. This is sort of encouraging. The Endocrinologist expects to find nothing with the blood tests he is running. He told us to make sure Sydney is getting 1600 calories a day, with 300 of them being minutes before bedtime. Sydney eats constantly but her stomach is small so she eats small portions. Sydney prefers vegetables and fruits so most of her snacking is low calorie. She is very active so she must be burning off all of her daily intake of calories. She is somewhat lactose intolerant so dairy can only be given in small amounts. We have developed a few strategies over the years. Sometimes, I give her dessert before her meal. Sometimes, I put the green beans out of reach and tell her she can have them AFTER she eats a donut. It feels wrong but I force myself to do it. I have been reading labels and trying to buy the higher calorie snacks for Sydney. That is a total reversal of everything I have done for myself and the rest of the family. 

A bedtime snack is already part of our routine for Sydney most nights so it is not a problem, but the choice of food is going to become a battle now as I aim for 300 calories. Two nights ago, Sydney wanted a vegetable at bedtime. I gave her an ice cream sandwich instead. Even then we were still not going to meet the goal of 300 calories. Sydney ate a few bites willingly but when I wouldn’t let her abandon it, she cried and it took her a long time to finish, thus delaying bedtime for her. Last night, I gave her a half a peanut butter and jelly sandwich and a piece of cake, with a reward of watermelon for finishing the high calorie foods. That went a little better. My oldest daughter, watching me struggle to get enough calories into Sydney, reminded me that I usually use charts and prizes for changing a challenging behavior. So, today I went to a farm store and got a toy Sydney has been coveting for a while: a semi-truck and cattle trailer for her herd of plastic cows. I took her with me to help pick out the color she liked best. I explained that it will take ten stickers to earn the truck. She will get a sticker every time she eats the bedtime snack I choose to serve with no complaining or crying. It may take her a long time to earn the toy. Although, the reward is a big one and she really wants it, by bedtime the medicines that helps Sydney to stay reasonably calm and control some of her impulses has worn off. She often tries to manipulate us at bedtime and delights in any turmoil she can instigate. After only two nights of me pushing a bedtime snack she is already seeing it as a potential for much drama and turmoil. The drama she can create will probably be more rewarding than the toy. The chaos she can create will be so desirable that she may be tempted to cause problems even when she wants the snack I offer and could easily earn a sticker for eating it nicely. This is who Sydney is and this is how she thinks. This is what alcohol did to her brain. Sometimes she does things she doesn’t even want to do or like to do to get a reaction that she does not even want to get, all because she had a thought, an impulse, and she cannot stop herself from acting on it. 

Update:  Our first night using the reward stickers began with me reminding Sydney of the expectations. I am trying hard to choose snacks she likes, or at least, does not hate. As I set a bagel covered with strawberry flavored cream cheese in front of her tonight, I saw the beginnings of tears. I set the box containing the truck on the counter beside her plate and reminded her how much fun her cows were going to have riding in that truck. It took her a while but she got the bagel finished and she went to bed without any drama. She is sleeping with the truck (still in its box, of course) and her first sticker is on the chart. Maybe ten days will be all it takes to earn ten stickers and the bedtime snack routine will be instilled by then. I can hope.  (If you enjoy reading about Sydney and want to read some of the "interesting" things she does, read my earlier posts entitled "hoarding" and "Sydney-isms.")

See what happens next here: 39 Pounds and Gaining

eye contact and whales

My last post was in regard to eye contact.  A few days ago, Tate talked briefly with his behavior consultant through skype.  Today, she mentioned to me how well Tate did with his eye contact on skype.  This caused me to do a lot of thinking.  Could Tate feel more comfortable making eye contact through a video chat because it is less intimidating than having a person next to him?  Or maybe he is just so much more motivated to make eye contact because of the computer/video aspect?  This will need to be explored.  Perhaps Tate can practice making eye contact through video chat and generalize it to people next to him. 

Videos, movies, television, computers, and anything else electronic, are great motivators for Tate, as they are for many people with autism.  We have used electronics often in the past to motivate Tate to learn.  Even in preschool Tate would often work hard for a chance to watch a video clip on a computer screen.  Tate did not learn to add two digit numbers using pencil and paper, even after a lot of practice, but the day his para showed him how an i-pad could be used as a chalk board, Tate learned to do the addition.  He was motivated to learn because he wanted to use the i-pad.  The only way he could use the i-pad was to work on his math lesson so he was very willing to practice.  Now he can do the math with pencil and paper.

A couple of years ago I read a book called “Just Give Him the Whale!” by Paula Kluth and Patrick Schwarz.  I spent much of Tate’s toddlerhood trying to stop his obsessions with things and break him of the things that appeared odd.  The book “Just Give Him the Whale!” caused me to change my thinking somewhat.  The example given was about a child that was fascinated by whales.  A child with autism will often talk constantly about one area of interest, leaving little room for anything else.  Instead of always redirecting him and trying to “tone down” his interest in an obsession, in this case whales, whales could be used to teach math concepts, geography, science, reading comprehension and more.  We tried a little of this with Scooby Doo.  It was Tate’s favorite show for a couple years.  We used Scooby Doo and his friends in math problems.  We bought books about Scooby Doo and Tate was motivated to read them.  He paid attention to what Scooby Doo was doing so we were working on comprehension.  We could also use the Scooby Doo shows as rewards for Tate’s hard work.  We were “giving him the whale.”  Tate is no longer as interested in Scooby Doo as he used to be.  Scooby was replaced with iCarly, and again with the Muppets.   



Tate with "the Whale" haha 

I have been “giving Tate the whale” a lot recently.  If you have read my earlier posts, you will remember me talking about Tate’s attachments to inanimate objects.  I “lost” Tate’s Blue’s Clues notebook to make our life (and his) easier.  The i-pad is the new Blue’s Clues notebook in Tate’s life. Luckily it has all the appeal for Tate that the cheap, plastic notebook did.  What a great teaching tool the i-pad has become.  

Remember, in the last post, I spoke about the people we attend worship with?  Tate cannot remember their names, after years of hearing their names and seeing them three times each week.  Today, after summer school, which we call math camp, (see my post from April 25, 2012, called “Homework) Tate walked out with another boy.  Tate sits with this boy three days a week and has done so for four weeks now.  I asked Tate what the boy’s name was.  Tate did not know.  Ironically, because Tate is so motivated by television, he CAN recognize and remember the names of most of the characters in the shows he watches on television.  He not only knows the name of their character but he usually knows the real name of the actress or actor too.  If he likes a movie, he gets online to watch the credits or the trailer for the movie so he can memorize the actors’ names.  If we watch an animated show then he learns who did all the voices, as well.  It is amazing to his peers at school.  Tate always seems to know what actors are in the new movies that are coming out, but he cannot remember the names of his classmates.  He sees them every day.  Tate has his own i-pad now.  Maybe he will be motivated to learn his classmates’ names if he takes their pictures and has them on his i-pad.  He definitely would be motivated to learn their names if they would just make a movie he was interested in seeing.  haha



look into my eyes

One of the things most people with autism have trouble with is eye contact. It is one of the classic signs of autism. Tate has limited eye contact. There are theories out there about why. Some people think that eye contact is painful to a person with autism. I don’t think that is it. I don’t think Tate feels pain when he looks into my eyes but it does seem to make him uncomfortable. He looks away long before another child would. 

When Tate was a toddler and had lost much of the language he had developed, he then retreated into himself. He, like many children with autism, had the ability to shut out the world around him. He didn’t answer when we called. He stopped looking up when someone walked into the room, and he seemed deaf at times. When I was first educating myself about autism I kept reading about the avoidance of eye contact. When I had Tiny K (an early intervention team provided by the state) come to our home to have Tate evaluated, I had one foot in denial and one foot in the world of autism. I argued, “look, he looks at my face and he doesn’t avoid eye contact.” One of the teachers pointed out to me, very gently, that Tate did use eye contact, but on his own terms. If he initiated the interaction then he used brief eye contact but if someone else tried to engage him then he had almost no eye contact. I saw they were right. This is still true today. When Tate is excited enough to talk to someone about something HE is interested in (usually a movie) then he becomes animated and will make and maintain a little eye contact. However, if someone attempts to start a conversation with Tate, we often have to remind him to look at their face. We even have to ask him to turn toward the person who is speaking to him. He doesn’t use appropriate body language to show he is listening at all. Sometimes he isn’t. I have told him that people do not know you are interested in them if you are not looking at them. I imagine him thinking, “But I am NOT interested in them.” I have said, “Tate, you have to show you are interested in someone if you want them to like you.” I can imagine him thinking, “I don’t care if they like me or not.” I have told him he needs to be friendly. I can imagine him wondering why it matters if he is friendly or not. It makes no difference to him. If I had to describe autism in one word, and only one word, the best word would be “aloof.” The definition for aloof is: “uninvolved or unwilling to become involved with other people or events; remote in manner.” That sums autism up in a nutshell.

One of the things we work on a lot with Tate is reciprocity. Reciprocity is the back-and-forth exchange people have with each other, in conversation or any interaction. Tate just doesn’t know how to “keep the ball rolling” in conversation but also with body language, including eye contact. None of it comes naturally and what we are able to teach seems stiff and insincere. 

We attend a very tiny congregation of the Church of Christ. When services are dismissed, I often stop Tate from leaving the building to sit in the car. I tell him he needs to greet three people. He almost always chooses to speak to the same three people, and all he says is “hello.” He will usually answer any questions they ask him. If I give him the stipulation that he has to say more than “hello,” then he will tell them something about the next movie coming out that he wants to see. Then he wanders off, sometimes while they are in mid-sentence. The people we see at worship services are adults who he has known all his life. He knows the names of about six people we worship with. If I tell him to greet someone specifically, he often has to have me point to the person I named. He has been attending worship with these people since he was born but he cannot name most of them. They are friendly to him and always glad to see him but he has probably never looked at them really. 

I went to a workshop recently given by a speech pathologist. She talked about how to teach social skills to people with autism. She uses a term: “thinking with your eyes.” A person with poor social skills needs to be taught to look at other people and see what they are looking at. She says we have to teach kids with autism that others “think with their eyes.”  This is true. Tate doesn’t follow my eye gaze to see what I am looking at. Joint attention is not something that people with autism learn naturally. It must be taught. Typically developing children learn early on, if someone says, “look!” you should look at their eyes to see WHAT they are looking at, and then follow their gaze. I have been thinking a lot about this since that workshop and working on this with Tate. It is a hard concept to teach. 

As I was working in the kitchen this morning, I noticed one of our kittens watching me through the window. He wanted fed and he was watching me to see which direction I was moving. When I left the window and went toward the door he was there, greeting me. The kitten was better able to anticipate my motives and movements than Tate is much of the time. When I went outside, our miniature goats began bleating, calling for attention and our rabbit hopped over to the side of her hutch, hoping I would be reaching in to pet her. I am not saying these animals are smarter than Tate, by any means. Tate is a smart boy, with emotions and he loves and is loved. It was just interesting to me as I fed, watered, and petted animals this morning, how much attention they sought from me compared to Tate. I offered Tate breakfast and he accepted. If I would have tried to hug him he would have allowed it but not really wanted it. I talked to him and he did respond, but not with any enthusiasm. Yes, I know many ten year old boys would not want to be hugged by their mom and many boys would not love to have a conversation with their mother, first thing in the morning, but Tate has never really wanted much interaction, at any age. He does allow me to touch him, hug him and show him affection though, and many with autism would not. So, for this I am grateful. 

In contrast to Tate and autism, there is Sydney and ADHD.  She got up this morning, clinging to my leg as I walked around trying to get things done. She started talking before she was even out of bed and did not stop, even while chewing her food. She has “never met a stranger.” She stares at people, even their faces, and never gets tired of conversing with anyone that will listen. She might have a little trouble with reciprocity but it would be only because she hardly pauses to let someone else get a word in. When we go to worship, she makes it around to many of the adults, telling them all about her pets, toys and activities and asking them questions about themselves. She loves people. There are many days I wish I could give a small part of what Sydney has to Tate and a little of Tate would rub off on Sydney. He would become more interested in his surroundings and she would calm down a little. In some ways, I suppose that has happened. Without Sydney, Tate definitely wouldn’t be able to do some of the things he can.  Sydney is a great therapist for sure. 


If you enjoyed this post, you might also like this one about Tate's aversion to touch:  Don't Touch My Skin

Find me on Facebook at Quirks and Chaos. Or, if you want to become a follower, click on the Google Friend Following gadget on this blog. It's over on the right side and asks you to subscribe. Or you can add the URL (the web address in your search bar) to your Reading List. You can do that by clicking the plus sign in front of the URL. Thanks! 

It's everywhere. Do you recognize it?

Have you ever noticed when you buy a new car, suddenly you see that particular model and make all over the road?  Or, when you are thinking about getting a particular breed of dog, that breed is on leashes all over town?  It isn’t because people have suddenly gone out and gotten the same thing you are interested in, but it is because you are more “in-tune” to that particular thing and just noticing it more.  This is what happened to me when Tate was diagnosed with autism, and then again when I learned about Fetal Alcohol Syndrome.  I didn’t even know what autism or FAS were, really. Then suddenly, I was surrounded by people on the autism spectrum and by people whose mothers (in my mind) had to have consumed alcohol while pregnant.  I saw, and continue to see, the quirks that are stereotypic of autism and FAS, all around me.  I can recall people from my childhood who had many of the same issues Tate has.  Children and adults I have known, in the past and present, are always under my scrutiny.  Half the world seems to have autism, or at least, some of the characteristics, and the other half have been affected by alcohol or drugs in the womb.  Of course I am exaggerating, but I do see it almost everywhere I go.  It is because I am so aware of all the quirks Tate and Sydney have, and for now, it is what I am most interested in.  Autism and FAS are my passion right now as I try to help these two precious children that have been entrusted to me. 

Think back to your school years.  Do you remember the awkward kid(s) who just didn’t fit in anywhere?  They didn’t know how to start a conversation.  They probably didn’t dress stylishly and maybe didn’t even comb their hair.  They might have been much more comfortable with adults than peers.  How about the kid who ALWAYS wanted to talk about “Star Wars” and nothing else?  You probably knew a kid with autism, aspergers, or at least some of the characteristics.

Shawn and I ate at a restaurant a couple weeks ago.  Sitting at a table next to us was an elderly couple with their two grown sons.  Both sons had autism.  Autism is easy for me to recognize now.  I saw the stereotypic stimming, the limited eye-contact, the poor social skills, and neither of the men seemed to feel the need to wipe their chins.  Their mother made sure the chins were wiped.  Tate wasn’t with us that night.  I wondered if the mother of those two boys would have looked over at our table and saw the same things in my son I was seeing in hers.  I wanted to go over to their table, pull up a chair and introduce myself, ask her some questions about her experiences, and meet another mother who could understand some of my feelings and experiences.

I found, getting a diagnosis of autism for my child was like becoming a member of a club, “the autism community,” some people call it.  We all have things in common.  We talk about autism (A LOT) and we are always comparing notes, looking for ways to help our kids be successful.  Some of the best friends I have, I have met through Tate and his therapies.  If I were asked to think of any benefits of having my child diagnosed with autism, I would have to start naming people.  I have been inspired, humbled, educated, and encouraged by many of the people we have met along the way; some of whom have had a much harder road to tread than I.

Years ago, when I first heard about Attention Deficit Hyperactivity Disorder (ADHD) I was a young mother of several typically developing children.  I believe I first heard about ADHD on a news program.  My children were well behaved and they responded well to discipline.  It is all I knew.  I had typically developing children.  I thought ADHD was a label being put on children to excuse their parents for never teaching them how to behave.  I believed there were a few of them with legitimate issues of some kind, but I just could not understand why the majority of these kids were not able to behave like typically developing children did.  I’m embarrassed that I ever had that opinion.  Not all these children have the same reason for their inability to sit still and concentrate and learn.  I don’t know if doctors are blaming ADHD on genetics or toxins or alien abductions (haha) but I have seen a lot of kids with ADHD since I began volunteering at the grade schools in the past few years.  Most of them are sweet kids, with great parents, and they try really hard to behave.  They just cannot sit still and they cannot stay focused on the tasks at hand.  Sydney’s ADHD probably came from her FAS, but not all kids with ADHD were exposed to any drugs or alcohol in the womb.   

I also used to think the world was over-medicated.  Now, I believe medication is a tool that should be used.  I’ve seen so many children the past few years in public school that would probably benefit from a prescription like Sydney’s.  She does not have the ability to sit and focus and she could not learn until she began medication.  Now she can sit and focus and learn.  The medication cannot cure her or even boost her IQ, but it can help her to focus long enough to learn what she can.  Kids like Sydney are not uneducable.  They just need help.  There is potential that cannot be tapped without the help of medications.

In this post and others, I have talked about Tate’s diagnosis and the doctors we saw initially.  The way autism is diagnosed is changing.  The labels given will soon be different.  In recent years a doctor gave a person a diagnosis of autism, aspergers syndrome, or pervasive developmental disorder not otherwise specified (pdd-nos).  A person with aspergers syndrome usually has social deficits and narrow interests, but above-average intelligence. A person with aspergers would not have had a language delay, while a person diagnosed with autism would have had a language delay or even be non-verbal, in addition to their other symptoms.  The diagnosis of pdd-nos is given when the doctor sees many of the symptoms of autism, but not enough to have the diagnosis of autism.  The doctor who diagnosed Tate on the spectrum, when Tate was two and a half, gave him the diagnosis of pdd-nos.  He called it a “high functioning autism.”  Because Tate had a large vocabulary and communicated well for a while and then regressed and lost his ability to communicate, the doctor also said Tate had “regressive autism.”  Because autism spectrum disorders all fall under a huge umbrella, there are categories and subcategories a person can be diagnosed with.  That will soon all be done away with.  I have been reading, beginning in May, 2013, the diagnosis of aspergers and pdd-nos will no longer be given.  To receive a diagnosis on the autism spectrum a person will now have to have a communication delay, and exhibit every other symptom of autism, thus doing away with the asperger diagnosis and pdd-nos.  A person on the spectrum will be autism level one, two or three.  Level one is a person who needs some support, level two will be a person who needs substantial support, and level three will be a person who requires very substantial support.  I believe Tate will be considered level two.  It will be interesting to see how this new way of diagnosing children will affect the help a child receives in school.  The label given to Tate does not change the amount of help he needs or who he is.  Autism spectrum disorder, Level 2 autism, pdd-nos, or special needs; the label is hardly important.  He’s my little boy and he needs help to learn and navigate throughout his day. 

Shoes: Fetish or Fashion?

In my last post, I spoke of Tate’s attachment to objects, and I spoke briefly about his shoes.  Mentioning the shoes, brought back a lot of memories for me.  I’m sure Tate’s attachment to his shoes was partly because of the familiarity and routine that went with wearing the same shoes every day.  However, it was more than just that. 

When Tate was at preschool, the attachment to his shoes sometimes got in the way of his daily activities.  There were times when Tate was expected to remove his shoes.  At rest time, or for water play, or sand play, the shoes needed to come off and Tate was stressed.  There were occasional art projects when the kids were supposed to trace their feet, or even make footprints with paint that caused Tate to melt-down.  Paint caused sensory over-load for Tate, even when he was using his hands, so the removal of shoes was a double whammy.  There were a couple of games the teachers played with the students during circle time that caused Tate a lot of anxiety.  One game called for the children to remove one shoe and throw it into a box or bucket.  A child was asked to pull a shoe from the container and take it to its owner, thus teaching matching skills.  Mercifully, the teachers made sure Tate’s show was on top, and back on his foot as soon as possible.  There was another game that was similar and I think both shoes had to come off for that game.  We wanted Tate to take part in as many activities as possible and learn to deal with these kinds of things, so he was forced to participate most of the time.  Tate got plenty of warnings before it was time to take his shoe(s) off and plenty of reassurance that his shoe(s) would only be off for a short time.  I watched circle most days through a two-way mirror and it was hard not to intervene, run into the room to get his shoe back for him.  When Tate becomes anxious it is hard for me to watch.  He seems to be in pain physically. 

When Tate was eight we planned a family trip to Seattle.  It was to be Tate’s first time to fly.  I did not know how Tate would handle the flight.  I had heard some pretty awful stories from people about flying with children who had autism.  Tate’s behavior consultant suggested a social story.  She reminded me Tate would be expected to remove his shoes when we went through security.  She also reminded me about how different the bathrooms look on a plane, another potential trial for Tate.  I am usually able to anticipate and prepare Tate for hardships he will face, but I had not even thought about the difficulties of getting Tate to walk through security.  Any one part of the whole process could have been hard on him, but especially the removal of his shoes.  Allowing his shoes to ride on a conveyor belt would be another potential problem.  Yikes, I was getting worried.  We read the social story several times and acted out “going through security.”  Pretending and imagining are hard things for Tate to do so acting out a scenario is difficult but we tried.  Tate had lots of questions about it all and was quite anxious as he got used to the idea of giving up his shoes to a stranger.  When the day came to leave on our trip, we rushed through security without a hitch.  Tate was nervous and he did stim but, overall, he did very well.  I credit the social story and the practicing.  Thank goodness Tate’s wonderful behavior consultant anticipated the problems and helped us to prevent them.  The airplane ride turned out to be one of Tate’s favorite parts of the vacation.

Tate seems to have outgrown most of his anxiety over shoes.  He still cannot tie a bow so I buy Velcro shoes.  I found a shoe store that carries them in adult sizes.  Tate’s feet are huge now so we just buy the same shoe every time, one size bigger and he hardly notices we got new ones.  Shoe shopping used to be so traumatizing for Tate and now it is not an issue.  I sure hope the Velcro shoes go all the way to size 15 because I imagine his feet will grow as big as his brothers’ feet have.  His feet are already bigger than his brothers’ feet were at age ten.

Shoes are an issue for Sydney too but in a very different way.  Sydney does not form unnatural attachments to inanimate objects. She has favorite toys and clothes but no more than any typically developing child would.  She does, however, LOVE shoes.  Sydney doesn’t get attached to any one pair.  She loves them all.  She learned at a very early age, to say “my shoes are hurting my feet,” as we walked past the shoe department in a store.  I, being the intelligent person that I am, only got “taken” a few times before I figured out the game she was playing.  Sydney’s favorite shoes are flip-flops.  She cannot wear the cheap ones because the plastic gives her blisters, and her high tolerance for pain allows her to ignore the blisters until they are huge sores. (See my earlier post called “Does it Hurt” for discussion about pain tolerance.) I have to buy her flip-flops that have fabric between the toes, and even then, watch for her feet to get sore.  I tried just avoiding flip-flops for her entirely but she took all the laces, straps, and buckles off all her shoes trying to create flip-flops herself.  She just loves them so.  I have to hide them for the fall and winter.  I used to toss them onto a top shelf in my closet.  I have had to find a much better hiding place because the temptation is too much for Sydney’s limited impulse control.  She knew those shoes were up there and climbed my shelves to get them down whenever I was not watching.  Most of my older kids would not have disobeyed like Sydney does, and if they had, they would have learned from a single spanking not to climb the shelves or attempt to get something off-limits.  Sydney does not learn from a spanking and she cannot plan ahead and remember the consequences of her actions.  It amazes me continually that Sydney does not seem to realize she will be found-out if she wears shoes I took away from her.  The impulse control to touch, grab, or obtain things that she wants, is just too great for her to resist.  Exposure to alcohol in the womb took the ability to control her impulses.  No amount of talking, reasoning, or consequences for her actions can give that back to her.  One of my biggest fears for Sydney is that she will someday be in jail because she could not resist the impulse to shop lift and steal things.  I have read that a large percentage of the people in our prisons today, show signs of Fetal Alcohol Syndrome (FAS), thus they have little impulse control and they have poor judgment.  They do not learn from the consequences of their past actions or think about what the consequences of their crimes will be.  FAS is a birth defect that mothers (BIRTH mothers) could completely eradicate.  If no more babies were born with FAS the number of people in prison would drop dramatically in a few years.  A child should not have to pay the price for a birth mom’s binges.  It is a life sentence.