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. 

unusual attachments

Tate with his beloved duck named Boris.

One of the signs of autism is an unusual attachment to inanimate objects.  Tate began this at a very young age.  These objects come and go and sometimes come again.  Often, the attachments are video/television related.  One of the first objects I remember Tate attaching himself to was a Blue’s Clues notebook.  He loved the show so I got him a little plastic notebook that came with a crayon.  I had no idea what I had started.  Tate carried the notebook with him everywhere and he slept with it.  If the crayon was separated from the notebook he became inconsolable.  The crayon broke and I replaced it with a similar one but he couldn’t stop thinking about the broken one.  When Tate woke in the mornings, if the notebook was not right beside him, there was panic.  If Tate laid the notebook down and couldn’t remember where he left it, the whole family searched madly until it was found because Tate seemed to be in physical pain.  The notebook became too big of a burden for us to bear.  The Behavior Consultant I have relied on so heavily, advised me to take the notebook away and I threw the notebook out.  We went “cold turkey.”  It took about three days for Tate to accept it but it was gone and our lives became so much easier.  I think if we found a plastic, toy notebook like that today, he’d pick it up and hang on tight.  The pull of the notebook was that strong.  Any small spiral notebook is still very appealing to Tate and I am careful to watch for the obsession to begin.  I make those little notebooks disappear if I see an attachment forming.  I’ve hidden and discarded many over the years.

There have been numerous attachments to objects since that first notebook.  Toy Story toys were very appealing to Tate and he was very attached to a Woody doll for a while.  The doll became a real problem because Tate wanted the hat to stay on the doll’s head at all times.  Tate couldn’t sleep much at night for a while because every time he laid the doll down, the hat would come off its head.  Tate wanted Woody next to him on his pillow (with the hat on) but the hat couldn’t stay on in that position.  Tate would stay awake, to hold the hat on Woody’s head.  I finally had to take Woody away at night and make a rule that Woody could not “sleep” in Tate’s room.  That took days for him to accept.  When we saw Toy Story 3, we were in the theater.  There is a scene in the movie and Woody actually loses his hat for a while.  When Woody lost his hat, I thought “Oh no!  This is going to be a problem.”  It was.  I was empathetic as Tate stopped enjoying the movie and worried about Woody without his hat.  I feared Woody would go on to do Toy Story 4 hatless and leave me with a miserable little boy for years to come, but Woody recovered his hat so Tate and I were spared.       

In that same Toy Story sequel, Buzz spoke in Spanish and Tate became very insistent that his own Buzz should be able to speak Spanish.  He couldn’t let it go.  These kinds of thing become so important to him that he thinks of little else.  If I had been able to find a Buzz that spoke Spanish I probably would have bought it for him.  Most of Tate’s toys do not become obsessions.  Most of Tate’s toys are rarely played with at all.  He likes toys but he likes them to sit on a shelf so he can admire them.   Tate likes to organize his toys into groups.  Some of the groupings make sense to me but some do not.  His cars might all be in a box together but his Star Wars toys might be mixed in with other boxes of toys he “organizes.”  If I try to rearrange things it bothers him and he will often “fix” the “mess” I make when I try to organize.  Tate thinks in this same “unorganized organization” as well.  Temple Grandin explains it well in one of her books.  One memory or thought triggers another and soon Tate is thinking about something that is totally unrelated to the topic at hand.  Because the movies and videos are so appealing to Tate, most of his thoughts come back to a movie scene or character.  This kind of unorganized thinking makes it very hard for Tate to learn.  This is why Tate cannot learn from lectures.  Besides getting lost in all the language that he cannot process quickly enough, he is distracted by all his own thoughts.    

Sometimes Tate becomes attached to things other than toys.  Getting new shoes was something I always dreaded when Tate was younger.  He would carry around the old ones, while he wore the new ones.  He had to “mourn” the loss for a day or two.  Trading our Suburban for a van a few years back was pretty hard on Tate.  Getting new bedroom furniture was a very hard thing.  Tate has blankets and pillow cases that have become very important to him as well.  He has the "pet" rock named Rocky that has been very important to him.  Sometimes Rocky is a big part of our life and then we don’t see him again for a while but he always seems to resurface.  Tate has had attachments to sunglasses before and that attachment had to be nixed.  He wanted to wear the sunglasses, even inside, so it was hard for Tate to see.  One of the longest attachments Tate has ever had is to his watch and his hat.  Tate cannot tell time but he loves his watch.  He couldn’t buckle a watchband for a long time so I found a Velcro band.  The watch even quit working and Tate still wore it.  However, a few months back, he traded it for a new watch, with a strap that buckles and he learned to buckle it.  I was shocked he would even consider a new watch but he did.  There was a time when trading his old watch for a new one would have caused days of anguish.  Tate is so attached to his hat that some people have never seen him without it on.  Hats have always had a tremendous pull for Tate.  He had a fedora he loved when he was little but it was not age appropriate so we hid that one and he chose to wear a black news-boy hat.  Tate wore it until it was falling apart.  Each time a hat becomes worn or stinky, and it is time to trade for a new hat, I warn Tate for a few days prior.  When we actually trade, it can be very stressful for a few days afterward.  It is much like a small child giving up a blanket or a pacifier.   

The last time we went hat shopping, Tate chose a ball cap with a Jayhawk on the front. It was the smoothest transition we have had yet.  I told him to pick two so he could have an extra.  I expected him to pick two exactly alike.  I told him he could do that so the next trade would not really be a trade at all.  But he chose two different hats with a Jayhawk on each.  Once in a while, I bring out the second hat and remind him we have it.  Hopefully, the next trade with go as well as the last.  He is really making some progress. 

If you liked this post here is it's "sequel" Shoes

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Privacy: hiding the diagnosis or hiding from the diagnosis?

I hate privacy laws. The purpose is to keep people safe I suppose, but they do not work that way for my two kids.  Privacy laws keep schools from telling people about my kids’ disabilities. A substitute teacher is not supposed to be told a student has autism. How can that possibly work in the student’s best interest? In an emergency the adult in charge, would assume the student had age appropriate skills to cope. At the very least, the child does not learn as much on the days there is a sub if the sub does not know there is a challenge of some kind for that child. 

Tate in Kindergarten

I did not know this when Tate began school. I assumed all adults who came in contact with Tate, in any capacity, would be informed of his disability and educated a little about autism. That is not how it works due to privacy laws. Only the teachers working directly with Tate or Sydney are supposed to be told about their diagnosis and behavior issues. I had to tell my kids’ librarians, music teachers, P.E. teachers, art teachers, and secretaries about their disabilities myself. I even stopped the janitors at Sydney’s school and explained what her disability was and asked them to step in if they saw her behaving in an inappropriate way. 

Sydney and Tate

This year, I insisted both my kids’ IEPs state that substitute teachers have to be told about my kids’ special needs. It became very important to me after walking into a P.E. class when Tate was in third grade. He was crying, rocking and stimming while his classmates were playing a sort of dodge-ball game. It was chaos. At the front of the room was a substitute teacher who had not been told Tate had a disability. At that point, Tate did not have a support person with him in P.E. either. I was still fighting that battle. I could write volumes about the power struggle that went on over para support, and I probably will (but not today.) It is not quite as urgent that a sub be told about Tate’s disability if he has para support with him. However, I would still like every adult who has any part of educating (or keeping Tate and Sydney safe) to understand there is a language delay and behavior issues that need to be considered. 

We live in a very small town and don’t plan to move in the near future. The more people in town who know about Tate and Sydney and their special needs, the more people I will have watching and helping to keep them safe. They are less likely to be bullied by peers, if the peers and their parents, understand my kids have a disability, as well. 

Sometimes schools do not even show a student’s para the student’s IEP. The para works with the child more than any other person. The RR teacher, the classroom teacher, and the para are part of a team. If the para is not “in the loop” and does not even get a look at the IEP how are they supposed to fully understand the child’s needs and the goals set for that child? I have heard the arguments. First there is the privacy policy argument. And second, paras are not necessarily educated or trained as a teacher. Oh brother! If they were not intelligent adults, able to help educate my child, they would not have been hired. If they are not worthy of reading my kids’ IEP then don’t hire them in the first place. It is not a secret that my kids have an IEP. I want them read by everyone so they can be followed. 

I have asked that Tate’s classmates be educated about autism and the schools have been really cooperative in giving Tate’s classmates age-appropriate information each year. I wish there was a way to share information with Sydney’s classmates about her disability as well but how do you explain alcohol consumption during pregnancy to seven year olds? For now, Sydney knows she is adopted. She knows what that means. She knows what her pills are for and what they do and she knows she feels better and is able to think clearly when she takes her medicine. When the time is right, we will explain to Sydney what ADHD is and what Fetal Alcohol Syndrome is. How fair would it be to keep it from her? 

I know a parent who has a child with high-functioning-autism. The kid is several years older than Tate and has more social skills than Tate, and more language. He has never been told he has autism. Now THAT is a privacy policy. It must be a pretty difficult secret to keep. I have chosen to be very vocal about Tate’s autism. How much damage could be done if he did not know? I wouldn’t want to be present the day he found out he has autism, if he was never educated himself about what autism is. Tate hears the word autism every day and has since he was diagnosed. He does not have an accurate idea of what autism is because he doesn’t have that much language comprehension, but if he did, I would explain it all to him and be happy to. He does know he has something called autism. He sees he is different than his peers and he knows he needs more help than his peers.  He can see them doing lots of things he cannot do and he sees them understanding things when he does not. Writing those last two sentences caused me to stop and think: Tate probably has a pretty good idea of what autism is.




This is a post explaining how I educate Tate's classmates about autism and how helpful it has been: What is Autism? or Why Does Tate Act That Way?

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