Wednesday, September 24, 2014

The Note Home From School: Necessary for Moms, Nuisance for Teachers

Tate, age eleven
Communication between home and school is important to maximize the educational experience for all children. Obviously, if a child’s communication skills are limited, the communication between parent and teacher becomes even more important. Many things can be accomplished when parents and teachers are vested and cooperative, working toward the same goals. If at any time a disagreement arises that is allowed to fester and communication is disrupted then the child’s education will suffer.

When my son, Tate, began a preschool program, the caretakers recognized the need for a note home that described his day to us. It was more than just information about his academics and physical wellbeing. It helped us to work on Tate’s conversation skills. Some children with autism are nonverbal and some are verbal but are not able to have meaningful conversations. Tate could not, and still cannot, have age appropriate conversations. Although I am VERY thankful that he can talk and that he can usually get his wants and needs met by using words, I am greedy and wish that he could converse with me and use much more complex language than he is able. He cannot usually talk about his feelings or things that are not concrete. He cannot talk meaningfully about the future or anything too abstract. He cannot process language quickly so that throws another wrench in things. He does much better than he used to because of constant practice at school and at home.  

As long as we had that note coming home from preschool I could ask Tate very specific questions about his day and guide the conversation, using the information I had been provided. I could talk to him about books he’d been read that day, the art work he had done, the games he had played, what had happened during circle, what he had done on the playground, who he had sat by at lunch, and anything unusual that had happened. I needed conversation starters and things like a broken drinking fountain, a spill, a guest in the classroom, a classmate’s birthday treat, or a spider that startled the teacher, were invaluable to me as I tried to engage Tate in social communication.

When Tate transitioned to public school I asked for the same kind of note to come home with him and we added it to his IEP. The note that came home was not what I had hoped for. It was often just a list of subjects that were studied and the concepts that were taught. I explained over and over that I really needed conversation starters and I gave examples. I was told that other children’s names could not be shared with me in a note due to privacy laws. That was just one of many excuses given and the note home became a real conflict. The more I asked for, the less I seemed to get.

It is so hard to explain to someone without a child with autism, the reasons for so many of the things I have done, and why I have been willing to fight so hard for something so seemingly small as trivial information about my child’s day. But, those things are THAT important. What it might look like to a teacher is that I am a helicopter parent, hovering and needing to know about every second of my child’s day. In reality, I was (and am) a therapist at night, not just a mom, and I NEED something to work with. My child was away from me for eight hours. The conversation starters provided me about the escaped classroom pet, or the kid who accidentally kicked their shoe off in P.E. when they kicked the ball, were so valuable to me yet so stingily shared. I could not understand it. Was it a power struggle? Was it spite? Was it a misunderstanding despite my constant explanations? Was absolutely nothing interesting happening in my son’s time at school? For eight hours? Surrounded by 18 to 24 busy peers?

Fortunately, I had friends who worked at the school who were willing to share interesting tidbits about Tate’s day through emails some days. And eventually we moved to another school where the note home was not a point of contention for any of us. These days the teachers call me on the phone, text, email, and send notes home in Tate’s backpack, all of which are helpful for me when I try to engage Tate in conversation. And, the coolest thing of all? Tate can sometimes initiate a conversation with me about what happened at school. Could it be that all those evening hours of mom therapy and all those notes home are paying off? You bet your conversation starter they are paying off! The note home, autism parents, is worth fighting for. 

For another post about Tate's language development click here: Reciprocity

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Monday, September 22, 2014

Reciprocity: Keeping the Ball Bouncing.

Reciprocity. Not a word I used in casual conversation until I entered the world of speech therapy with my son Tate who was without it. Reciprocity is defined as the practice of exchanging things with others for mutual benefit. I think of reciprocity as sort of like a game of catch. One throws “the ball” (the topic of interest) to another who catches it and throws it back. A person with social skills can keep the game of catch going for quite a while without losing interest in the game or dropping “the ball.”

Social skills, as most other things, have to be taught systematically to Tate. He does not pick things up from his environment. Then there is the fact that autism and reciprocity are like oil and water. Tate is not interested in others and hearing what they think about much of anything so asking them and attending to their answer would not come naturally to him.
Tate, age 12

It has taken years of teaching and reinforcing but we have recently seen some significant progress. Tate has started asking others how they feel or how they are doing, if they have first asked him. Granted, it does not mean he is actually INTERESTED in the answer they give but at least he appears to be. 

The first time I asked Tate what he had done “today” and he gave me an answer and then reciprocated with, “What did you do today?” I was blown away. He had done it! Did that mean he had mastered social reciprocity? Were we about to see some real back-and-forth social interaction? Were we going to start hearing real conversation from him? I was elated.

The second time I heard this new “skill” used was when I asked Tate, “What are you eating?” and he answered my question and said, “What are you eating?” I was not eating anything and it was obvious. Why had he asked me what I was eating? It left me scratching my head. The third time Tate demonstrated reciprocity was when I asked, “What movie are you watching?” and he answered and said, “What movie are you watching?” I was not watching a movie. So as time went on and we saw more and more of Tate's version of “reciprocity” I realized that although we had progress we did not have real conversation. What we had was actually a sort of glorified echolalia, or parroting. Sometimes it sounds like he is trying to be a real smart alack but he is absolutely not. He is trying to use the rule that we have taught him. When I ask him, “Have you brushed your teeth?” and he answers and repeats the question it sounds like he is being disrespectful or mocking me. He does not have a clue that it sounds that way. 

Like most other things we teach Tate, we teach the general rule and then we have to teach all the exceptions to the rules. Most children just learn these things from their environment. Most children have brains that are like sponges, absorbing major social rules and all the tiny nuances to the rules. So how do I teach Tate the exceptions to the reciprocity? Hmmmm. I haven't figured this one out.

Some situations I find myself in with Tate are comical. Recently, we were in a public place and I wanted to give Tate the opportunity to visit the men’s room. I quietly asked him, “Do you need to go to the men’s room?” He loudly responded, “No. Do you need to go to the men’s room?” That got some attention from others. Yesterday we ran into a friend in town and she asked Tate if he liked it at the Junior High. He responded, “Yeah. Do you like it at the Junior High?” She looked at me and laughed. She’s about sixty years old and Junior High is long behind her. Tate is about to have a birthday and an older sibling asked, "What do you want to do for your thirteenth birthday?" Tate responded with, "I want to go to Chuck E Cheese. What do you want to do for your thirteenth birthday?" That sibling is 24 years old. 

He’s got the general rule down though! We cannot get a question past him that he does not reciprocate! In the meantime, be careful what you ask him! 

If you liked this post, here is another similar one you might like: What brought you here?

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Thursday, September 18, 2014

Mommies Don't Give Their Kids Away

Sydney, September 2014
Sydney will soon be eleven years old. She lived her first ten months in an orphanage in Russia. In Russia the law at the time of her birth was that an abandoned child had to wait six months to make sure no relative came forward to claim them before they could be put up for adoption. We got Sydney’s picture in August of 2004. She had just become available for adoption and our adoption agency wanted to know if we would like an invitation to visit her. The adoption process took eight weeks between our initial visit, which they scheduled for October, and the adoption date in December. We stayed two weeks when we visited Sydney, actually seeing her only twice, spending an hour or two each time. We came home and returned in December for the adoption. That trip also took two weeks but most of it was spent with Sydney in our care. I have many blog posts I could write about those two trips and I plan to. I’ve touched on some of this before. See: A Sparkling Personality

Sydney has Fetal Alcohol Syndrome, thus making it hard for her to understand difficult concepts and retain things she has learned. I have often told her the story of her adoption, explaining that I did not give birth to her but got her from a hospital (which doubled as an orphanage.) Even so she continues to forget and ask me about her birth sometimes as if I were her birth mother. Because we adopted Sydney at a young age and she has no memories of her previous life in Russia I have not spent a lot of time reassuring her about being in her “forever home” as I would have a child who was adopted later in life. I wrote a book for Sydney when she was around five or six years old to help her understand. She loves to look at it and she loves it when I read it to her. She has a paper copy and I keep a copy on my computer. I update it from time to time, making it just a little bit more detailed and adding a new picture or two. I’ve attached a copy to this post.

I dread the day Sydney finally realizes that she had to have come from somewhere and not just originated from a crib in an orphanage. I dread the day she asks me just whose tummy she did grow in. I’ve thought about the things I can say. “Your first mommy loved you so much she wanted you to have a better life with a mommy who could take really good care of you.” How does that sound? It might be the truth. Maybe. Perhaps, “I don’t know” will be what comes out of my mouth. Or maybe, “Go ask your dad.” I love that little girl so much I don’t want to hurt her or even plant a seed that might someday grow into hurt.

I was motivated to write this blog post this evening when Sydney did ask me a question that knocked the wind out of me. I thought she understood the concept of adoption and family, even if she does not understand the origin of life. Out of nowhere this evening Sydney asked me what happens to kids when their parents have to move to a new house. I must have looked at her a little funny because she went on to say, “Like, if you and dad move to a different house, do you find someone else for me to live with or do you take me with you?” For a second I could not breathe. I had no words at first. I reached over and pulled her onto my lap and said, “Sydney, you are my little girl. You go wherever I go. Mommies don’t give their kids away.” Then I choked up again because I remembered she had already been given away. Thank God she’d been given away. Given to me. I only wish I had been the one to give birth to her and to have been able to nurture and cherish her as she deserved those first ten months.

As the hours have ticked by since Sydney’s question, I have considered where it could have come from. She does have friends who live with grandparents instead of parents. She knows children who have their custody shared by two households. She has asked me in the past to explain why some kids have stepsisters and stepbrothers. Sydney even had a friend briefly a couple of months ago that was in foster care. I THOUGHT I had done a pretty good job of explaining these things to her.

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Monday, September 8, 2014

Should I stop calling autism a disability?

In recently months I have received three messages from people with autism asking me to stop calling autism a disability or a handicap. I’ve also been told by more than a couple parents that they would not change their child and take their autism from them if they were given the opportunity. I cannot even wrap my mind around it. My son, Tate, is 12 but functions at an intellect of about age 7.

When Tate was diagnosed I never would have dreamed there were people out there who would not mourn their child’s future the way I did when my son was diagnosed. I accept that my son has autism but I cannot rejoice in it. Autism has created obstacles and barriers that we are constantly trying to break down or find our way around. My son suffers because of his autism. He cannot communicate with us well and is often frustrated because we do not understand what he is trying to say to us.

We have done a lot of therapy to help our son and have seen great improvement in his level of functioning. I’ve since seen a tee shirt mocking the therapy we did. The quote was, “I survived ABA therapy.” My son survived it as well and without it he would have been lower functioning than he is now. 

The premise of some is that autism is not a disability but just another culture or race of people. I don’t buy into it at all. I see what the doctors at Children’s Mercy see: a neurological disorder, a disability.  

I admire Temple Grandin. A. Lot. I mean- I’m a huge fan. She says she would not flip a switch and change herself is if she could. I do not doubt her. I’m even happy for her. However, I still see autism as a disability. She had to overcome a lot of things. MOST of the people that I know in the autism community would flip that switch in a heartbeat. MOST of the people that I know with autism are not going to function at the level that Temple Grandin does.

I wonder if the people who ask me to stop calling autism a disability have ever put themselves in the shoes of someone with severe autism, or in the shoes of their caregivers. Possibly they cannot. Possibly they cannot because their empathy skills are limited or their theory of mind is almost nonexistent. Kids with autism often have self-injurious behaviors. Many are nonverbal, and do not understand their surroundings. Many are a danger to themselves. Many have to wear diapers. Many never learn to read or count. How can that NOT be a disability? The definition of a handicap is “a condition that markedly restricts a person's ability to function physically, mentally, or socially.” Sounds like autism to me.

Seen the news lately? There have been several children with autism who have wandered away and been found in bodies of water. Their mothers probably would have “flipped that switch” and eliminated their children’s autism if there had been one.

Tate, age 12
I’m not unhappy. I'm not bitter because my son was born with autism. When I'm counting my blessings though, I do not count autism. I do count Tate! We make the best of things; and we are enjoying a nice life. My son is considered high functioning. However, he DOES have a disability. While this family counts our blessings and understands we are one of the lucky ones, we still know that Tate is very limited in his abilities and his future will include a caregiver. I call that “being handicapped” and I do not believe it is anything to be ashamed of or embarrassed about. It is what it is. 

I wrote a similar post "Celebrate Autism?" in 2013.

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

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