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.

You might also like this post: Don't Blink

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Saturday Morning With Sydney

Weekday mornings I usually wake Sydney but on the weekends, she is often up before the sun, even if she is allowed to stay up late the night before. Almost every Saturday and Sunday morning that I try to sleep in an extra hour, we go through a similar chaotic scenario. She leaves her room early and goes and wakes the kids upstairs who would like to sleep-in. She gets into the pantry and feeds herself a variety of interesting things, often hiding some of these things under her pillow “for later.” (See my past blogpost about hoarding.) She cannot stick to anything for more than a few minutes until after her medication begins to work so she might play a video game for a few minutes, dump a bucket or two of toys, undress a doll, get a movie going in her little dvd player and immediately abandon it, check to see if I am awake and jump on my bed a minute, while asking a dozen questions but not waiting for a single answer.  Sydney’s room opens both into the hall and into my room. We designed the house that way so I would have a nursery connected to our room. It has come in very handy. On the weekends I usually remember to block the door to the hall so Sydney has to come through my room and I can intercept her. I forgot last night. Shawn heard her get up and gave her permission to go to the bathroom, with the very clear instructions that she should go BACK to her room immediately after. Shawn got in the shower and I dozed back off. I woke ten minutes later and figured I’d better check on Sydney. The first place I looked was her room but I have no idea why. It is a mystery to me why I have any faith left in her ability to follow an instruction. After all this time, and all these mornings gone-wrong, I still expect her to obey. I still am surprised when she has not followed the directions she is given. Why? I have often heard: “insanity can be defined as doing the same thing over and over and expecting different results.” Am I insane? I know that definition would actually apply to a science experiment proving the laws of gravity or something much more concrete than the whims of a child. However, this morning when I looked in Sydney’s room, hoping to find her playing quietly or reading in bed, I told myself that I must be insane looking there first.  I knew I would be more likely to find her upstairs in a sibling’s room, jumping on them while they protested, or digging in the pantry for something. Is it that I am only giving her the “benefit of the doubt” or that I am hopeful? Is it insanity?

I went into the dining room, calling her name. She didn’t answer. She was hiding behind the pantry door in the kitchen. She had a mouth full of food, and an American flag in her hand. The flag is one of Levi’s prized possessions. It came from a classroom at the Vinland school that was closed and abandoned. (Insanity abounds in this world.) The kids and I had helped the teachers pack up their classrooms and Levi had scored big when one of the teachers offered him the old, faded flag from the classroom. The flag in her hand proved to me she had already been upstairs. One of the rules at our house is that she can only go upstairs if she asks permission. Insanity struck me again, and I asked her:  “Have you been upstairs?” I expected the truth but she shook her head “no.” I said, “Sydney, I know you have been upstairs because you have Levi’s flag. Tell me the truth. Have you been upstairs?” She slowly shook her head “yes.”  I have many frustrations with all this. Is she able to give me the truth but afraid of the consequences? Is she always just going to give me the answer she THINKS I want to hear because she just wants to avoid conflict or make me happy? Is she unable to give me the truth because of her disability? Is this totally because of the lack of impulse control due to the Fetal Alcohol Syndrome? I do know it is NOT because of lack of parenting, love, or discipline. Discipline of any kind has not been effective. Spankings, time-outs, lost privileges or toys, and lectures do no good. Positive reinforcement, hugs, and love have not made a dent in the behaviors either. We tried a morning chart with gifts for 3 good mornings and it took her a month to earn one gift. Of course, consistency is needed and we have been as consistent as possible through all the uproar she creates. Sydney is able to control her actions to a certain degree once her medication has taken effect. Even then, though, she cannot seem to control her impulses to correct her peers or to pester those around her. 

After I found Sydney this morning, took the flag from her, lectured her about her disobedience and how important it is to answer me when I call, I made sure she had something to eat and her pills. Then I watched her and waited for her pills to do their job. She ate a waffle, leaving the table over and over. She played “Just Dance” on the Nintendo for a minute, went to the bathroom and talked non-stop while there, played with her trucks and animals for a few seconds, told me about a dream she had (which she made up as she went along), got dressed, loudly read me two pages of a chapter book, argued with me about why she needed to go upstairs and wake Bailey, got out a bucket of crayons and paper but didn’t use them, dumped out her Polly Pockets, then immediately dumped a box of Barbies, cleaned up the Polly Pockets (at my insistence), turned on the television in my room and found a show she liked (which she immediately wandered away from) and got her coat and boots on so she could go outside. The yard is just mud from the melting snow and I told her to stay on the porch and sidewalk, fully expecting her to obey me and not come in covered with mud. Am I insane?  Probably! 

For all my frustration, I can only imagine Sydney’s. Being expected to follow rules and routine when her impulse control is almost non-existent must be very hard. Every thought (impulse) she has seems to be like a powerful magnet, pulling her to it. Alcohol did this to her. A birth mother who could not or would not control her impulses to drink did this to her. If you have seen the movie “Dennis The Menace” and watched how Dennis cannot control himself when it comes to pushing a button, then you might have an idea of how it is for Sydney. Dennis tries not to push the buttons in front of him. He reaches out to do it, pulls his hand back, thinks and weighs the options, then quickly pushes the button. The power of the button was just too much for him. THAT is what Sydney must be dealing with. What she sees, she touches and what she wants, she grabs. If she thinks it, she says it. Thank goodness for the medications we have found. It’s been well over an hour since Sydney took her pills. She is lying in the floor, in front of a show, talking calmly to me about her next trip over to visit Grandpa’s cows. I could probably go get a shower now or leave her unattended for a few minutes and it would NOT be insane to expect her to be behaving when I return. My precious baby girl is back with me for the day and the wild child is gone until tomorrow morning. Same

Sydney, caught in the act when she was
about four or five. 

time, same place. 

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