What brought you here?

This past month we visited a pediatric psychologist at Children’s Mercy to get a diagnosis for Tate that will be accurate under the new guidelines that are being used in the world of autism. In recent years, the American Psychological Association (APA) used a tool called the DSM-IV-TR to diagnose Autism Spectrum Disorders (ASDs). ASDs included Autism, Asperger’s Syndrome and pervasive development disorder-not otherwise specified (PDD-NOS). In May 2013 the DSM-5 was introduced as the new diagnostic tool. This manual has eliminated the three subgroups. Tate’s doctors have told us that the word Asperger’s will soon be obsolete. It is my understanding that the new diagnosis for a child with autism will be Level 1, 2, or 3, with 1 being the highest functioning and 3 being the lowest.  Tate’s new diagnosis is Autism Level 2.  For more information about the new terminology and the new criteria I found this article helpful: http://www.autismspeaks.org/what-autism/diagnosis/dsm-5-diagnostic-criteria

Some think the motive behind the new criteria is to make it harder to get an autism diagnosis, thus bringing the alarming numbers down. I do not really have an opinion on the reasoning behind the change. I do hope that the new criteria will not harm the autism community and prevent children who need support from gaining it. 

In order to get the evaluation and the new diagnosis, the psychologist had to spend several hours with Tate. He gave her a pretty accurate picture of himself from the introduction. He asked, “Do you know what brought us here?” The psychologist assumed he was asking her to reveal the purpose of our visit and she said, “What do you think brought you here?”  He answered, “a truck.”  It got better (or worse depending on how you look at it).  While testing with Tate, she needed him to define words. When asked to explain what a car is for, Tate said, "A car is something you drive around in because humans are loosing the ability to walk." She asked him about posture and he started speaking gibberish. She asked him what he was doing and he said he was speaking Spanish, also called posture. When asked what an American is, Tate said, “When you are from America, you laugh a lot and smile and play in the sunshine. You also speak English or Spanish." So, he got that right! Ha. The doctor showed Tate a lot of faces that illustrated a lot of emotions. Tate failed to identify almost all of them correctly. The doctor asked him what a smile and a frown had in common and he said, “Both faces are round.” There were many, many more gaffes and blunders over the two days of testing. Some made us laugh and some made me want to cry.

Age 3

After all the testing, Shawn and I met with the doctor alone. The results and the recommendations from the doctor were both helpful and discouraging.  Going into Tate’s appointment for his diagnosis at age 3, and again at age 12, we had our eyes wide open. We already knew both times that he had autism and we had a long, hard road ahead of us. The difference between the first time when we heard the diagnosis “PDD-NOS” and the second time when we heard “Autism Level 2”, was that we had a lot of hope at age 3 that we no longer have nine years later. Originally, we fell hook, line, and sinker, for the idea that kids can “recover” from autism. We spent the thousands of dollars it took to get best-practice, early intervention. We spent the hours and hours it took to get Tate kindergarten-ready academically. We even made progress with a lot of social skills. We worked so hard and saw a lot of growth but we didn’t get the “recovery” that we had hoped for. I am still one hundred percent for early intervention and believe Tate is much less handicapped than he would have been without the hard work. Perhaps if we had not hoped for recovery we would not have worked so hard then. Perhaps if we had not hoped for recovery the reality would not hurt so badly now. I have learned not to dwell on “what ifs.”   

Regardless of what we call Tate’s disability, it is still the same disability and he is still the same kid. Tate still struggles in all the same areas. Tate still needs the same supports he did before the new diagnosis. We continue to make progress and I see it come in leaps and bounds sometimes. 

Age 12

Over the Christmas break, Tate’s oldest sibling, Titus, was home for a visit. He is sometimes able to explain things to Tate that I have been unable to. I told Titus we were working on teaching Tate about sarcasm. I know what you are thinking… Why would a Mom want to teach her child the art of sarcasm? Why would any mother in her right mind go out of her way to try and help her kid become sarcastic? Well, in the first place it is age appropriate. In the second place it is much like figurative language and joking that is over Tate’s head, causing him to miss out on so much of the conversation around him. Thirdly, we are constantly trying to make Tate see that not EVERYTHING has a concrete, literal meaning. Sarcasm almost always means exactly the opposite of the words that are actually used. So, Titus gave it a shot. He gave Tate a definition of sarcasm and some examples. Then we asked Tate to try. Tate looked confused. I said, “Tate, look at Sydney’s hair. It is a mess. What could you say about Sydney’s hair that would be sarcastic?” Tate responded, “Sydney, your hair is sarcastic.” Lesson fail!! I’ve been hammering away at it ever since though and pointing out sarcasm whenever we use it or hear it. Sunday, we sang a really short hymn in worship and Tate leaned over and whispered, “THAT was a long song.” Then he looked at me and smiled. Now, normally would I praise one of my children for saying something sarcastic about a worship song? Would I ordinarily get excited about whispering and joking during worship? NO! I would not. BUT… I almost came out of my seat I was so ecstatic. I pulled Tate over to me and excitedly whispered, “Tate! That was sarcasm! You did it! You said something sarcastic! Good job!” I know that eventually I will probably regret these lessons in sarcasm. I know this because four of my seven children are now sarcastic, young adults who did not need my tutorials to become that way. I had a shot at mothering a child without ever having to hear those sarcastic comments that come so easily to the others, but I am a glutton for punishment because just today I said something sarcastic to Tate and then said, “Did you hear that Tate? That was sarcasm” and he smiled. 

This is another post you might enjoy about language: Who's on First?

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Sometimes Moms Like to Remember: Shopping Trips

It has occurred to me a few times lately upon seeing large families out doing their shopping, what I must have looked like when I took five, six or seven kids with me to a store.  There were curious stares and often comments like, “Are they all yours?” and “You certainly have your hands full.”  Coming from a fairly large family myself (I am one of six children), and having planned to have at least five or six children, our “crowd” just did not look that large to me.  They were spaced about two to three years apart and each baby was welcomed whole-heartedly. I really loved being surrounded by my kids. So sometimes when I see a young mother pushing a cart with a baby seat and a toddler in the cart and two or three (or more) children trailing along behind, I get a little nostalgic. Sometimes a mom likes to remember...

These days when I go to buy groceries, I do not have a shopping cart full of diapers, baby food, animal crackers, or jars of peanut butter or jelly.  I don’t have to make dozens of peanut butter and jelly sandwiches each week anymore. We used to go through a jar of grape jam every week.  And that reminds me: One of my favorite stories to tell is about a time when my second child was four or five years old.  It was a Thursday.  I know that because I always did my grocery shopping on Thursday mornings back then. We were at the grocery store and she loved to “help.” The truth is I probably needed her help because I was most likely VERY pregnant, making it hard to bend over, or pushing a cart with one hand and holding a baby with the other.  My babies never made it all the way through a shopping trip without wailing to be held and who can think straight with a hysterical baby right in front of their face?  Not me. So, I became very good at pushing a cart with one hand.  Back to that Thursday morning, so long ago… grape jam still came in glass jars and it was on the bottom shelf. My little helper followed my directions and picked up a jar of jam but dropped it on that very hard floor. The result was a purple, sticky mess with lots of glass pieces scattered around it. I found a clerk who made the customary announcement, “Cleanup on aisle five.” Soon, a young man with a broom and a mop came to the rescue.  I apologized profusely and he was very forgiving.  Fast forward to one week later.  My little darling again picked up a jar of jam, and that slippery jar ended up just like the one from the Thursday before. So, I found a clerk, heard the intercom call for a cleanup on aisle five, and we waited on the nice young man with the broom and the mop.  I was embarrassed and very apologetic as I had been the week before.  The man looked at the mess then looked at me. He spoke two sentences to me. He said, “Could you start coming in on Tuesdays?  That’s my day off.” It wasn’t long after that and jam started coming in plastic containers.  And now you know the reason for that! Ha. Sometimes a mother has to laugh off life's embarrassing little moments.

I have a lot of funny shopping stories.  Once, when we got to our shopping destination, I had a toddler fall out of the van. Head first.  I had an infant in a car seat balanced on my left hip and only one hand free and a split second to prevent my child from landing in the parking lot on her face.  I grabbed her by the ankle as she tumbled out and I jerked up.  And there I stood… with a baby seat on my left hip and a little girl (in a dress) dangling upside down from my right hand above a hot parking lot. THAT was a hard situation to resolve.  Sometimes a mom really does need more than two hands. 

Once Isaac was born, we almost never made it through a trip to any store without at least one person stopping us to ooh and aah over his beautiful eyes. Isaac has light blue eyes with a dark blue ring around the outside. Women often wanted to admire his eyes.  (They still do.) Around age three, Isaac had taken all of it he could handle. If a lady approached him he’d hide his face. If someone commented on his eyes, he would cry. Those poor ladies felt so badly for terrorizing a preschooler! I considered putting a paper bag over the kid’s head to hide those gorgeous eyes for a few years there. Sometimes mothers have to take drastic measures.

One of the stories I have told the most over the years is about the time my oldest son had a major meltdown in a fabric store. He was about four or five and at the time wanted to be a cowboy when he grew up. He had a gun belt, a toy rifle, a cowboy hat, and a spring horse he called, “Trigger.”  He loved to watch “Davy Crocket” and other movies in which the hero fought savages. We live near a town that is both the home of a state university and a small Indian University. The dramatic meltdown occurred when we were in a fabric store and a couple of men walked by. The men were very tan with brown eyes and long black hair, obviously Native American. My boy became hysterical, screaming, and scrambling to hide behind me.  He was shrieking, “Hide! They will kill us! They will get their bows and arrows and kill us!”  Luckily, the men found it amusing and were not offended as I offered them my excuses and regrets. Being a mother is sometimes very humbling. 

I normally blog about autism and this post would not be complete without memories of shopping with a young Tate. When Tate was around eighteen months old he had some very unusual behaviors. I did not yet know that these behaviors meant there was an autism diagnosis in his future. I only knew that he was unique and very sensitive to many things that he should have been able to tolerate and he was very aware of some things that he should not have known at all. It was one of the most curious things I had ever experienced but when we shopped we could NOT walk down the aisle that contained cookies or we paid for it. Keep in mind he was the sixth child. I had experienced tantrums in stores before. I had experienced scared children before. I had experienced children who were in pain before. If Tate caught sight of a package of cookies or if he HEARD the word cookie then he went from docile to inconsolable and frantic. There was no way around it.  I tried my best to do my shopping without Tate along for quite a while.  It is very hard to avoid all signs of cookies when you are in a grocery store.  Another thing Tate did in the stores began about age two.  He could “read” the product names by singing their jingles to me or quoting their commercial to me as we wandered through the store.  When we saw the Charmin toilet tissue he would say, “Less is more.”  When we walked past the cereals he rattled off jingles and advertising slogans one after another. I could hold up a tub of margarine and he could tell me if it was Blue Bonnet or Parkay. He was not exactly reading but he had all the products matched to their commercials. He could memorize commercials, picture books, songs, or movie dialogue after just hearing it a couple of times IF he was interested in it.  He still can but only IF it is something that appeals to him.  He cannot/will not memorize math facts quickly, the name of states, or anything useful that we would like for him to retain.  It is maddening the way his brain works! Mothers sometimes have to accept what they cannot change.

I have so many precious memories of my little ones. My kids continue to bring me joy as they grow but I will always miss them as babies too.  Things were often a blur when I had so many little ones all at once but I am able to remember many of the special things they did and I tried to write some of them down in their baby books too.  I have many more memories to share in the future. If you are a mother, jot down the embarrassing moments, the things that make you smile and the things that are unique about your child.  Someday you will be very glad you did it because sometimes Moms like to remember.

What did I do to deserve this?

What did I do to deserve a kid with special needs?

What did I do to deserve a kid that cannot express himself well enough to have a conversation?

What did I do to deserve a kid who cannot reciprocate my feelings of love?

What did I do to deserve a kid who can only think literally, a kid who never "gets" a joke, a kid who can never think "outside the box" or understand an idiom unless it is explained to him?

What did I do to deserve a kid that cannot empathize or sympathize with others, a kid who will never be able to see someone else’s perspective?

What did I do to deserve a kid that was so hard to potty train; a kid who wet the bed until he was as tall as I am?

What did I do to deserve a kid who cannot brush his own teeth or bathe himself without help?

What did I do to deserve all the doctor bills and therapy appointments that come with a child with special needs?

What did I do to deserve all the early morning wake ups and middle of the night interruptions?

What did I do to deserve a kid with irrational fears and unexplainable obsessions?

What did I do to deserve a kid whose diet is so limited I can list what he will eat on a very small piece of paper?

What did I do to deserve a kid that cannot make a new friend or maintain a friendship?

What did I do to deserve a kid who needs a special education teacher and his own one-on-one paraprofessional to be able to go to public school?

What did I do to deserve a kid who is a second or third grader on the inside, a sixth grader in age, and taller than all the adults in his life? 

What did I do to deserve all the lessons he has taught me?

What did I do to deserve all the friends I have made and the relationships I have ONLY because of him?

What did I do to deserve all the laughter?

What did I do to deserve a heart that swells with love every time I look at my special kid? 

I am so glad that God does not give us what we really deserve because if He did, I would never have been entrusted to care for and love a child as special as mine. 

If you'd like to see another post, click on this link: It's not such a bad life.

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conversations and bowling pins

I have read some well-written blog articles this week.  The links are below.  The author of one of the blogs is the mother of a boy with autism. She expressed so many of the thoughts and emotions I have had since Tate’s diagnosis of autism.  The diagnosis for many of us moms is somewhat of a relief because it explains so much.  The diagnosis allows us to excuse some of the behaviors we did not understand.  Like the other mother, I also remember being VERY happy that the words “high functioning” were placed in front of the word “autism” each time the doctor gave his opinion.  Those two words softened the blow.  It was as if the words would mean the burden was easier to bear or those words would make our lives so much easier in the future. 

Also like the other mother, I hoped that all the early intervention would help “enough.” I hoped we could all but eliminate the handicap and repair his brain, leaving us with a quirky child, a child that was almost “normal.”  She and I have both found that the handicap only gets worse with age in many ways.  Some of the behaviors intensify.  Some of the behaviors do not intensify but appear to.  A five year old with an irrational fear does not appear nearly as handicapped as a teenager with an irrational fear.  Some of the things you have been able to stop your small child from doing, you cannot stop your six-foot tall child from doing.  New behaviors and challenges come with puberty. 

One of these posts is by a mother who knows the pain that comes from her child not being included by his peers.  Another post talks about how well her child is included by his peers.  Tate has been included by his peers and has not been mistreated at school.  I have never witnessed or overheard anyone speaking ill of Tate either.  In one of the blog articles I have read, the mother talked about the success of a buddy program in place for her son at school.  We have had something similar for Tate.  He has a lot of eyes watching out for him, always ready to step in and assist him if need be.  She also spoke of educating her son’s classmates about autism.  We have done that and found that it helped immensely.  Explaining Tate’s differences and the reason behind some of the odd behavior made it so much easier for the children to know what to expect from Tate and to be sympathetic to his quirks.  When we go out into our community, kids go out of the way to greet Tate, understanding that he will not necessarily remember their name, or even willingly return their greeting.  I usually thank the child for being friendly and apologize that Tate cannot remember their name.  The children are always very forgiving.  They usually even tell me “I know” when I remind them that Tate has a hard time remembering faces and names.  Yet they still keep trying.

Tate’s siblings are so aware of the handicapped people around them.  I’ve tried to instill a sort of golden rule there.  I have often reminded them to treat handicapped people they way they hope Tate is being treated by others.  They really have become good at going out of their way to be friendly to those around them who are “different.”  I talked my three college-aged kids into going bowling with me a couple mornings ago.  The little ones were in school and I wanted to spend some alone time with the big ones.  There was a handicapped man wiping down the counters.  He was very "quirky" and kept his head down but responded when we greeted him while we were choosing our bowling balls.  The song "These Are a Few of My Favorite Things" was on the intercom and I was singing along.  The man asked me if I liked the song.  I told him I did and I asked him about what he was doing for Christmas.  The more we talked, the taller he stood.  My son asked him to come and sit with us when he was done working.  He did not come over but did watch us from afar.  After a time, he was obviously done with his job and was waiting on his ride.  My son made a second attempt and being friendly and they had a nice conversation, mostly about his coat (very similar to the kind of thing a conversation with Tate would revolve around.)  The girls and I waited patiently for them to finish.  That conversation may, or may not have been, the highlight of that man’s day.  Regardless, it was much more important that knocking bowling pins down. I’ve thought about that man several times since we left the bowling alley.  Once upon a time, he was somebody’s little boy.  A generation ago, that man’s mother probably went through all the same emotions and fears that I have faced.  Before Tate entered my life I would not have gone out of my way to have a conversation with a handicapped man.  I would not have taught my kids to go out of their way to have a conversation with a handicapped man either.  Becoming the mother of a child with autism is one of the BEST "things" that has ever happened to me!  I hope that enough peer education is being done in schools and homes all around the country to ensure that Tate will be treated well when he ventures out into the real world.  And, I hope to return to the bowling alley soon, not so much because I want to knock down pins.  I want to see how my new "friend" is doing.

http://sheridacon.com/2013/12/17/unique-grief-special-needs-parents/

http://redvinesandredwine.blogspot.com/2013/10/this-is-how-inclusion-should-be.html

http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html