we have to "give them a clue"

A couple of days ago, I got groceries and had just begun moving them from the cart to the van when a young man came up behind me, very quietly, and startled me. I think I actually jumped. He was waiting for my shopping cart. He works at the store and wanted to return my cart to the store for me. It would have been much more convenient for me to stick it in the cart-return next to me when I was finished, but he thought he was doing me a huge favor by standing there and waiting. He didn’t SAY he wanted to return the cart for me. He just said, “hello” and stood and waited. I could tell he had autism for several reasons. He had the awkward gait, didn’t know what to do with his hands or eyes while he stood waiting, and he had a monotone voice. It was very cold outside and I commented about the temperature. He tried to have a conversation with me about the weather but didn’t really know how. I helped him like I would my son Tate, bouncing “the ball” back to him and asking concrete questions that he would know how to answer. He reminded me so much of Tate and how he would have conversed with someone. 

Tate with Melissa, one of his first
(and best) teachers. 

Last week, our good friend Melissa visited our congregation and worshipped with us. Melissa was one of Tate’s first teachers in his early intervention program. Tate so badly wanted to have a conversation with her. He tried with, “Hey, a church building is where you go to church.” Melissa replied appropriately then Tate tried again: “A few days ago, Levi did something.” Melissa said, “What did Levi do?” Tate said, “He fixed the game cube.” Then he sauntered away without properly ending the conversation. When Tate has a conversation with someone it is usually two exchanges with him pacing back and forth in front of the person he is conversing with, or bouncing in place. The church building is a great place for Tate to practice his social skills. After many worship services I grab Tate before he bolts from the building to sit in the car, and I tell him he has to visit with three people before he can leave the building. He hates it when I do that. He usually picks the same three people, so sometimes I tell him it has to be three people he doesn’t usually talk to. The poor kid. The poor victim he chooses too! Haha They are all great sports and give it their best effort. It is just hard to get him to make any eye contact or make much sense. I’ve turned my church family into speech therapists for Tate. 

The day after I had the exchange with the young man while I unloaded my groceries, I was in another store and saw another young man with autism. This guy was probably about 15 and was there with a teacher or mentor who was supervising him. I imagine the outing was a teaching experience or perhaps a reward for something. The teacher was doing a fantastic job of modeling appropriate behavior for the student. I did not gawk but I was in the same vicinity for quite a while so I listened. The student bounced on his toes when he walked, much like Tate does, and he had trouble knowing what topics were appropriate for conversation. He talked at length about his high score on “Bop-it” and he wanted to talk at length about a brand of bread that he didn’t often see on store shelves. I imagine the teacher was having a hard time keeping a straight face part of the time because the bread topic was so far out there. Tate does the same sort of things. He has no idea what is appropriate to talk about and what is not. He has no idea what kinds of things are interesting to other people and what things are not. 

Tate has announced to his peers at school before that he was going to take a shower when he got home and he sometimes tells his teachers he had a shower that morning. We’ve tried to teach him that other people don’t really care to hear about his showers. He recently tried to start a conversation by telling one of the staff at school that her skin looked old. She is a young woman, quite pretty, and she handled it very well but we all had a good laugh over that one later. A day or two after that incident Tate had a substitute in his classroom that was elderly and her skin was wrinkled. I was so worried about what their day was like. If Tate said anything inappropriate, I didn’t get to hear about it. I wanted to be a fly on the wall that day. On Veteran’s Day, the school invited local veterans to come and have lunch with the students. Tate walked into the office with his para, looked around at several older folk gathered in the office, and started to speak. Tate’s wonderful, insightful, wise para, quickly said, “Tate, think about what you are going to say, before you say it.” Tate said, “Oh, never mind.” Tate just calls it like he sees it, as do most people with autism. 

Tate’s Resource Room teacher and his Speech Therapist are always working hard on teaching conversation starters and how to sustain a conversation. It just doesn’t come naturally to a kid with autism like it does the rest of us. They are teaching him how to tell a joke and the poor school secretary has heard a joke a day for most of the year now. She is so accommodating and laughs for him. She is worth her weight in gold and a huge part of his day.

I cannot imagine how confusing it must be to live in Tate's world. I remember once saying something about "laughing my head off" and Tate coming over to me to inspect my neck. He needed to make sure my head was still attached. Recently someone commented on being "ate up with chiggers" and Tate looked extremely confused.  

We are all working on figurative language. Each week, Tate’s Resource Room teacher sends me a list of three to five new idioms or cliché’s they will be working on that week so I can reinforce them at home. It is so cool when I hear him use one of those at home. He has learned things like “I’m on fire” and “under the weather” and “letting the cat out of the bag.” These are the things that we all understand when we hear them due to the context. They have to be taught, systematically, to a person with autism. Otherwise, they will not “have a clue” what you are talking about.

If you have not ever read, Seeing Ghosts, then click on the link and enjoy. 

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is your criticism really that constructive?

For starters I should probably say:  I am thrilled with my kids’ teachers and their paras this year!  Both my kids are having fantastic years.  My frustrations have nothing to do with classroom teachers, Resource Room teachers, or paras.  Tate and Sydney have the best!!

When the parents of a special needs child get “constructive criticism” from a community member or a school administrator, they have a decision to make.  Do I try to explain things and risk having an explanation sound like I am making lame excuses?  Should I nod my head and smile, ignoring the advice given?  Should I write a scathing letter and tear it up before I actually send it?  Should I write a letter that I have to tone down over and over so I can actually send it?  Should I close myself in a bathroom for a while and shed a few tears, feeling sorry for myself and wondering if the world around me will ever understand?  Should I seek out the mother of another special needs child who “gets it” so I can have a sympathetic ear for a few minutes?  Should I write a blog post and use that as “therapy” for myself?  Should I sigh a heavy sigh and just keep on plugging along?  I’ve done all of these things at one time or another in the past few years.  Today, I considered a letter, but knew it was either going to be the blog post or the tears.  Here’s the blog post:

Sometimes I just want to scream, “How dare you!”  “How dare you judge me, or my precious little girl!  How dare you offer me advice or tell me how I could do things better.  How dare you assume I COULD be doing things any better than I am.  How dare you assume SHE could be doing any better!  Try walking a mile in my shoes and then we can talk.  Try walking a mile in HER shoes and try to manage as well as she does!” 

I started my blog so I could share what it is like for Tate and Sydney to get through their day.  I sometimes aim at the people who work with my kids so they can better understand where my kids are coming from, thus helping those who teach them to be better able to educate them. True, not everyone who works with my kids reads my blog.  True, I have not invited everyone who works with my kids to read my blog.  Although it is public, not everyone in our lives is aware of the blog, nor do I think so highly of myself that I think everyone would WANT to read my blog.  I hope it is being shared in my community and by my friends, to raise awareness about autism, ADHD and the challenges these kids face.  If it helps anyone at all to understand then I am happy.  

When a parent of a child with special needs is struggling to get things done they need to be encouraged, not reprimanded.  If you tell me Tate isn’t eating healthy enough, don’t you imagine I already know that?  Don’t you imagine I have already spent many, many hours worrying about that and working on ways to fix that?  Don’t you imagine I would do almost anything to fix that? 

If you tell me Sydney is late to school, don’t you imagine there is a good reason?  Don’t you know that I KNOW what time the bell rings and I KNOW she is having to use up two or three MORE minutes jumping through hoops and getting a pass to class?  Don’t you imagine that EVERY morning we are RACING to beat the bell so I won’t have to say, “Honey, you are late so go into the office for a pass.” 

Sydney is often late to school.  I’d like to say “through no fault of her own” but I’m not sure that would be accurate.  I also cannot say “through no faulty of MY own” either.  She is late, partly because I dread waking her and going through the morning chaos, and partly because of all the unpredictability of the morning chaos.  Her pills take thirty minutes to an hour to really benefit us much.  (I’ve documented two typical mornings in blog posts on December 22 and April 28, 2012 if you are interested and haven’t seen them before.)  I do the best I can.  Sydney does the best she can and her brothers and sisters do the best they can.  She really cannot help her hyperactivity or the energy or the lack of impulse control. 

Wake her earlier you say?  The earlier I give her meds to her, the earlier they wear off.  By 8:30 PM when I am trying to get her in to bed, she is bouncing off the wall again, talking non-stop, getting out of bed over and over and unable to settle down easily.  If I wake her earlier and start her day earlier then we pay earlier in the evening.  Thus, putting her to bed earlier and waking her earlier is not really a good option for us.  The school staff and her classmates already get the best of Sydney.  Although, her classmates complain often about her they do not understand how much worse it could be.  I often wonder if I sent her to school once with out her meds if they would come to appreciate her more.  Not long after she gets home from school her medications begin to wear off and I deal with the “evening Sydney.”   

Switch medications you say?  We’ve tried several medications and the two she takes are the two that have worked the best and the longest for her.  She likes being calm and she likes being able to think.  She likes being able to have a calm, quiet conversation with me.  She is pleasant and able to learn while on the medication.  She fully understands that no one likes to be around the Sydney that is out of control.  She CANNOT HELP IT!!!  Exposure to alcohol in the womb robbed her brain of the ability to control impulses.  There is nothing she can do about it.  There is nothing I can do about it, except give her medication to help slow her down. 

Some days Sydney is more than a few minutes late to school.  On those mornings it is often because her eleven-year old brother with autism wet his bed the night before, thus adding a shower and the stripping of sheets to our morning.  Or, perhaps I let him try to pour his own milk and that resulted in him having to change his clothes and be reassured over and over that it was “no big deal.”  You see, almost any change in his morning routine is going to result in anxiety.  Do you think YOU could get a kid to school on time if he was pacing and stimming?  I won’t even ask him to get into the car unless he is calm and happy.  I’m NOT going to ruin his day, his teacher’s day and his classmates’ day because he comes to school in “melt-down” mode. 

Get HIM up earlier you say?  Kids with autism often have erratic sleep patterns and Tate does NOT sleep very many hours a night.  I allow him to sleep until the last possible minute if he is still asleep when I wake.  Usually, though he is the first one up at our house.  His teachers often think he appears sick or tired because he gets little sleep. Getting Tate and Sydney to school before the bell rings is always a goal but it is just not one I can afford to make my biggest priority.  If you had walked a mile in my shoes you would be able to see that a child with special needs does not always appreciate our schedules and there are some things that are much more important than getting to school before the first bell rings. 

I’m not looking for sympathy or pity.  I am actually very happy and pleased, even content, with my lot.  I only write to raise awareness.  If you feel like offering some advice or giving some constructive criticism to a mother of a child with special needs, think again.  Are you really close enough to her to offer that piece of advice?  Do you really know what her day looks like?  Why don’t you instead think of a way you can encourage that mom?  

I parent because I was parented

I spent a little time with my grown nephew this week. He told me he once asked me how I was able to raise so many well-behaved children. He said my answer was: “with love in my heart and a wooden spoon in my back pocket.” That sounds like something I would have said. I have been reflecting a little on that this week and decided to blog about why I parent the way I do. I parent because I was parented. I have learned from the best. 

Most of the truly important lessons I learned in life I learned from the people who love me the most, my own parents. Of course, my earliest teacher was my mom. My mom taught me about love. She almost never seemed to lose her patience. When I was small, she could read me book after book after book while I sat on her lap or next to her in her chair. She did really good voices and read with great expression. I am sure I love to read now, as an adult, because of my mother’s love of books. The love of books and her patience were just lessons within the lesson though. What my mom was really teaching me was how to be a good mom and a good person. 

When I was older and on occasion got sassy or rude to my mother, she did not often raise her voice or show disgust. She treated me nicely even when I did not treat her nicely. She wasn’t afraid to spank me when I needed it but she didn’t ever abuse me. I knew I was loved, even when she had to resort to a spanking to get my attention.

Lisa Fish

I remember asking my mom when I was very young who she loved the most. I had five siblings, and figured she had to have a favorite and it was probably me. My mom’s answer was a surprise and I remember it stinging a little bit. She told me she loved my daddy more than anyone else in the world. Over the years I would occasionally ask her again and her answer was always the same but it didn’t sting at all as I got older. If fact, it made me feel very secure. I knew in a world full of divorces and cheaters, my parents were there to stay. My mom and dad showed affection to each other in front of their children often. By showing me how much she loved my dad, my mom was showing me how much she loved me. One of the most important lessons a mother can teach her children is to love their spouse.  God commands men to love their wives as Christ loved the Church and women are commanded to submit to their husbands. My parents believed it, taught it, and practiced it. 

My mother and father married at a very young age. My dad was nineteen and my mom seventeen. My mother knew how hard it was for a seventeen year old to be a wife. My parents’ rule was that we were not allowed to date before age sixteen. Long before I began to date, my mother talked to me about love and the kinds of feelings being married requires. I specifically remember her telling me that a teenager was not capable of knowing the difference between love and infatuation. My mom talked to me about the things that were important in a husband, specifically ambition. Did I want a husband who liked to lay on the couch, content to live in a crummy neighborhood, or one who worked hard so we could raise our children in a nice home? Because of the things my mother was not afraid to say to me, I grew up knowing I would search long and hard for the man I wanted to share my life with and I would not confuse infatuation with love. Nor would I “settle” for second best. I found Mr. Right in my early twenties but had the mind-set that I would never marry at all if I couldn’t find someone as wonderful as my own father. 

My college graduation, 1985

My dad is a good man and one of the hardest workers I have ever known. I rarely saw my dad sit down and watch a television show while I was growing up. He worked hard at his job and worked a lot of overtime so we could have nice things. He wanted to put us all through college and he couldn’t have done it without working the overtime. When my dad wasn’t working, he was still working. We had one of the nicest lawns in our neighborhood. He gardened and grew vegetables, which my mother canned. He kept his tools clean and his garage organized and he always seemed to have a project going on his workbench. My dad had a recliner but seldom sat in it. As a matter of fact, one of the only times he did sit down was during a worship service. My dad taught me that we never miss a worship service, ever. We only missed if we were sick; not sick with just a little cough either, but really sick. My dad liked to fish and he liked to hunt but he did not miss worship services for those activities either. My dad taught me that the Church ALWAYS comes first. God comes before family, friends, education, recreation, and everything else, with no exceptions. 

I don’t remember my dad lecturing me a lot or having long talks with me about many things. He taught me so much by example. As I said earlier, I looked for a man to marry who was like my dad. Had I settled for less, I would have been forever comparing the two and have lived a pretty sad married life I think. 

I was a little bit afraid of my dad growing up. Don’t feel sorry for me. That was a good thing. A little bit of fear is also called respect. I knew I had to obey or suffer the consequences. We are told to fear God and keep His commandments. I know my children have had the same healthy fear of me that I had of my own father. If only more kids today respected their parents…

I don’t have a lot of memories of my dad playing games with me growing up. My memories are better than that. Although, he did play Monopoly with me occasionally and he did like to play Canasta a lot so we did that sometimes. I was a Tom-boy and loved to fish and shoot guns so my dad let me tag along on fishing trips and occasional hunting trips. One of my favorite memories is fishing in a little boat he had on a small lake, near my grandparents’ home. We did it as often as we could manage every summer. Once in a while I got to go with my dad and grandpa on a coon hunt. I am sure I slowed them way down and they had to help me over fences and creeks but they never made me feel like I was a hindrance. My dad set up a target in the garage so I could even practice with a bee-bee gun and pellet gun in the winter. 

My dad showed me he loved me by providing for me and working hard. I remember my mom saying many times the reason daddy worked so hard was because he loved us. My dad taught me that I should always return things I borrow in the same shape I borrowed them in, if not better. 

I am going to be fifty soon but my parents are still parenting me. I know I often frustrate them. My dad has one of the nicest lawns in the county. I live just a quarter mile from him and my yard is weeds. He drives past it every day. I know he must look at it and wonder how I can stand it. I leave my nice things out in the yard sometimes and they get rained on. My dad taught me better and is still teaching me by his example of stewardship. He takes really good care of his things. My dad is fifteen minutes early everywhere he goes and I am five minutes late. I know that when I am tardy it drives him crazy. I try harder because I have his example. Even though my yard is weedy, my kids’ bikes are out in the snow right now, and I was five minutes late yesterday, I know my dad loves me. I can see it, feel it, hear it. I parent because I am parented. 

How many children are being brought up in single parent homes? How many of dads do you know who are dodging child support payments? How many people do you know on welfare who will most likely be grandparents of people on welfare someday? I am very outspoken about my political and religious views. I believe the increased entitlement programs are a bad thing. The cycle needs to be broken. It must be very hard to parent differently than you were parented. History shows us that. I don’t want to break my cycle. I parent because I was parented. 

My mother tells me she wouldn’t have known how to do for special needs kids the things I have done for mine. Perhaps not exactly because it was a different time and there was different information available and fewer resources available. I believe my mom did parent a child of special needs and she didn’t even know it. It was me. I was painfully shy and insecure. I had such horrible separation anxiety that I cried every morning before kindergarten. It made me feel better if I could see my mom a little bit longer so after she put me on the bus in front of the house, she would run around to the back porch and wave to me as the bus went up the street behind our house. I could catch one more glimpse of her between the houses and she knew that would help me get through the transition of home to school. My mom SHOWED me she loved me in so many ways. I show my kids because I was shown. I parent because I was parented.

Sarah and Sam Fish, in their eighties now.

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