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

Are you dreading the holiday break? Home? Alone? With your kids?

Tate came home from school a little early today because he wasn’t feeling well.  I was happy to go and get him.  It reminded me of something.  There was a time that I prayed some mornings before I got out of bed that Tate would have a fever so I could keep him home with me for the day.  Let me explain:  When Tate was in preschool I was miserable.  He was the sixth of seven and we had never had a child in a preschool program or a daycare before.  I was a stay-at-home mom for the reason that I wanted to spend every minute I could with my kids right up until the day they started kindergarten.  My husband and I even voiced our opinion loudly every time the idea of all-day kindergarten came up in our district. 

After Tate was diagnosed with autism, I did the research and found that best practice therapies for Tate were going to include forty hours a week of applied behavior analysis.  We got busy and hired a couple college kids from our area to help me to fit in forty hours a week of discrete trial training and incidental teaching.  Tate was not able to pretend.  His receptive language was not good.  His expressive language was almost non-existent for a while.  I found out quickly that forty hours a week broken into 5 eight-hour days was not going to be practical, although I kept it up for a while.  Six hours, six days a week wasn’t quite forty but it was a little easier.  It was exhausting.  I saw that I was giving eighty percent of myself to Tate and spreading the other twenty percent of me to the other five children and my husband.  No one complained.  We all knew that we had a small window of time when Tate’s brain was most malleable and the motto here was “Early intervention is the key.” 

When we heard that a spot was open in the well-known Early Autism Program at Kansas University I was both thrilled and sickened.  It was what Tate needed but I felt like it would rob me of my baby.  Looking back I know that autism had already robbed me of my baby and the Early Autism Program would work hard at giving him back to me, but at the time, it was hard to hand him over.  Those poor teachers!  They had probably never had a mother hover like I did.  The large classroom, where Tate would be taught to play with other children had an observation room.  He was surrounded by typically developing peers and he had his own teacher that would help him to interact.  That first month I rarely left the building.  I sat in the observation room for hours.  The small rooms where they took Tate for one-on-one discrete trial training also had an observation room.  I learned as much as Tate did, I am sure.  I watched Tate but could also occasionally catch sight of other children with autism.  I believe there were four or five enrolled in the program.  I was very humbled to learn that Tate was barely handicapped at all in comparison to some of the children I saw.  I learned to count my blessing pretty quickly.  I had been so sure that Tate was the pickiest eater on the planet because he would only eat about eight or ten things.  I met a little boy who only ate pretzels.  Period.  Then there was the stimming.  I wanted so badly to break Tate of his stims (repetitive stereotypic behaviors) but I found that his stims were nothing compared to some.  One boy sometimes came to school with a bloodied head because he liked to bang his head on very hard surfaces.  I had wished that Tate could have conversations instead of just spouting movie quotes and labeling things, but I met several children that were completely non-verbal.  I wished Tate could sustain eye contact for long periods of time.  I met a little girl who would not look into anyone’s eyes for even a second.  I watched kids with autism who could throw a twenty-minute fit, pause for a minute to catch their breath, and start all over again.  Teachers had to rotate in and out as they became tired but the tantrum throwers never seemed to tire.  I learned a lot from all those hours spent in observation.  I was so thankful for all that two way mirrored glass!  It is probably a good thing that they do not have it at the Junior High!

Tate tells me he will be going back to school tomorrow.  Ha!  I will be trying to talk him into telling me he needs another day to recover. 

My three college kids are home for a month.  I am counting the minutes until my three youngest kids are home for Xmas break.  They will be home for 16 days before I have to hand them back to their teachers.  I am so excited.  No alarm clocks, no lunch boxes to pack, no rushing to beat the bells in the morning, no waiting outside at 3:00 in a long line to retrieve them, and no strict bedtimes.  There will be leisurely mornings, no real dress code, lots of playing and laughing and movie watching.  There will probably be a little bit of whining and some sibling arguments to referee but nothing I cannot handle. 

I see and hear so many comments from moms that say they are dreading the holiday break.  It breaks my heart for their kids.  I just do not understand it!  Is it the fighting they do with their siblings?  Then make them stop!  Who is in charge anyway?  My kids fight sometimes.  I make them stop.  Is it the boredom?  Give them something to do!  Play with them yourselves!  It is not punishment for you that your kids need your attention.  I’ve said it many times before and I’ll keep saying it:  If you did not want to be a mama, why did you have kids?  They are a lot of work, some more than others.  Didn’t you know that?  You were a kid once too!  I had a great mama and I want my kids to remember me as a good one too.  Will your kids remember you playing with them?  Will they remember you counting the days until they'd be home for a break or will they remember you counting the days until they'd be back in school and someone else had to deal with them?

Okay, I’ll step off my soapbox.  I’m countin’ the days!

What is discrete trial training you ask?  I talk about it here:  http://quirks-and-chaos.blogspot.com/2012/05/what-is-discrete-trial-training.html

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The day I forgot...

You know that feeling of horror you get when you goof up in front of someone else?  What about if your goof also affects them in a horrible way?  Maybe you slip and fall on the ice and quickly get up to look around and see how many people saw.  This past week I did not just slip and fall in front of a crowd of people but I slipped and fell taking the whole crowd down with me.  This is all just a parallel but you get the idea.  I do embarrassing things all the time.  My poor husband suffers through them all quite bravely.  My kids do not.  One of my older daughters is constantly trying to teach me the correct way to behave in public but I do not believe she thinks I am making any progress under her tutorials. 

It’s been a week since I made a really big mistake and I’m ready to talk…  This is the kind of mistake that did not just make a small tremor in my world, but quaked the ground of the community in which I live.  Okay, so I am exaggerating a little, and it will someday be “no big deal” to the people involved, but on the day it happened…. it was huge.

If you’ve read very many of my blog posts then you are well acquainted with Sydney.  If you haven’t been following long, check out some of the older blog posts.  Here is enough background to get you to where you need to be in order to understand how huge my gaffe was… Sydney’s birth mother drank a lot of alcohol while pregnant.  Sydney will suffer the effects of that the rest of her life.  It has not been an easy nine years for her, or for our family, but since the discovery of the wonderful doctor who prescribed two medications to “slow her down” and help her to focus and learn, our lives have changed for the better.  Just saying “our lives have changed for the better” seems inadequate though.  Before we began these medications, I followed a little tornado around all day.  She could not sit calmly; even to eat.  She could not learn the names of shapes or colors, the alphabet, how to count, or even how to do one-piece puzzles, because her mind was never still long enough.  I heard a special education teacher say once that teaching a child with Fetal Alcohol Syndrome was like throwing a ping-pong ball at another ping-pong ball that was bouncing and trying to connect.  She said that she was able to get the child’s attention for a brief moment about as often as she’d be able to hit that bouncing target with her ball.  I thought it was an excellent illustration.  Sydney has now had three plus years on medication and it is like night and day.  She is still somewhat immature, even on the medication, but I can almost imagine she is “typically developing” from 8:00 AM until 7:00 PM most days now.  Sydney has caught up to her peers in reading, with the exception of comprehension.  This is the semester that numbers have begun to make sense to her as well.  I’m excited to say she is doing two-digit addition, simple subtraction, and has mastered quite a few multiplication families.  For years she has been stuck redoing kindergarten math.  That has finally changed. 

So, are you ready to hear how I goofed?  You may have already guessed it.  One day last week I forgot to give Sydney her medication and I took her to school.  I have no idea how it happened.  Usually the difference in Sydney when she wakes around 7:00 in the morning, and an hour later when I deliver her to school is profound.  Once in a great while, her morning starts out calmly enough that I am not RACING to the pill bottles as soon as she jumps out of the bed.  I guess that last Tuesday was one of those mornings. I simply forgot the pills.   

I delivered Sydney to school and went Xmas shopping.  I had a great day.  No one at school did.  When it was time for me to head home, I took a minute to check my email.  It was about forty-five minutes before the school day ended.  I had email from two teachers telling me that Sydney was not herself.  I thought back to our morning at home and realized that I must have forgotten the medication.  I could not call the school fast enough.  I was able to talk to the principal and apologize over and over and over again.  You see, I KNOW what Sydney looks like off her medication.  The school staff was not prepared for what they had to deal with that day.  It had been three years since I had dealt with THAT Sydney but I remember what a struggle it was to get through a day.  The small tornado had been unleashed and I was the one responsible. 

I am so impressed with Sydney’s teacher this year.  I like her more with every passing week.  This is the first year Sydney has had a classroom teacher who I’ve not known well.  Her teachers in the past have had some (if not all) of her siblings and have watched her grow up.  All but one of her previous teachers were at her baby shower!  Our little rural school was closed a few years ago and we were forced to move the kids to school in town.  If you’ve read previous blog posts you will know that I had to constantly battle with that original special education team to get adequate help for Tate and Sydney.  We live in a small community and all that fighting left me with a reputation that I have been trying to live down ever since.  I don’t consider myself scary or intimidating but I’ve been told that some of the staff at the new school thinks that I am.  Add all that to something Sydney told me and I suppose that is why no one called me early in the day to inquire about Sydney’s “questionable” behavior.  Sydney told me that when she was asked about whether or not she had taken her pills, she told a teacher she was out of pills.  Now, Sydney’s medication is very expensive.  The two prescriptions combined are almost $400.00 each month.  Multiply that by 12 months for 3 years!  Our insurance does pick up a portion of that after we meet a deductible but we’d find a way to buy it anyway.  The difference in Sydney with and without the medication is just that enormous.  I think I’d sell my car (or a kidney) before I’d let her run out of her pills.  Ha!

The tornado, or as her siblings used to call her when she was very small, the monster, had been unleashed on Sydney’s poor schoolmates.  If you’ve never read one of my posts describing a typical morning with Sydney before the meds kick in, scroll down and read one, then imagine living that for eight hours, all the while trying to teach another twenty kids in the room the things they were supposed to learn that day.  That is what I put Sydney’s teacher through when I forgot her medication.  Imagine being eight years old and trying to learn and pay attention to the teacher while one of your classmates ran around the room causing chaos.  That is what I put Sydney’s classmates through.  They tell me she could not do simple math that day.  She could not read a simple passage.  She could not draw a picture.  She was intent on aggravating the other students and singled out one in particular to torment again and again.  She was “out of control.” 

I’m not sure that saying Sydney was “not herself” was really accurate.  Unfortunately, that is exactly who she was that day: herself.  It was all the other days that she was not the “real” Sydney.  You see, the medicated Sydney is sweet, affectionate, cute, calm, and so easy to love.  The medication alters who she is so she can learn but it also alters who she is so other people can enjoy her.  Sadly, the natural (non-medicated) Sydney, the Sydney that alcohol destroyed, is wild, aggressive, hyperactive, loud, obnoxious, and she tests the patience of even the most tolerant people.  But wait! Can I even say the unmedicated Sydney is a true picture of who Sydney is?  Perhaps the real Sydney, the Sydney without the effects of the alcohol, would be very much like the medicated Sydney.  It is something to think about!

If you’ve never known a child with extreme ADHD then you may have trouble understanding just how much we value the medication.  The contrast is THAT amazing.  I myself did not believe it until I saw it.  My kids have had classmates in years past that were behavioral problems in the classroom.  Me, not understanding, often figured they were kids who had gone undisciplined.  I now understand that they may have been kids with ADHD.  Perhaps their parents were reluctant to use medication.  Perhaps their parents had not found medication that made a difference.  Perhaps there is not a medication that can help some kids to the degree Sydney’s medications help her.  I do not know; but I do know this: Sydney takes her pills and about an hour later she has some self-control.  An hour after she takes her pills her brothers can come out of their rooms without fear of being tormented.  An hour after she takes her pills she can have an intelligent conversation.  I also know this:  A pregnant woman who drinks is inflicting a life-long disability on their unborn child.  The world would be a better place if there were no alcohol in it.

If you like reading about Sydney, here is another post you might enjoy: Never a Dull Moment

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Regrets

I’ve been doing some deep thinking lately.  I’m getting older and four of my seven children have left home.  I’ve been pondering some what-ifs and reminiscing.  I know that it is normal for people to have regrets and wish they could do some things differently when they look back at their lives.  I definitely would make a few different choices on a few different days from my past, especially from my teen years.  I think most of those kinds of things are completely normal. 

I am really proud of the way my children have turned out so far and do not have regrets there.  However, there are a very few things I would do differently concerning the raising of my children.  I am motivated to write this blog post because I would love for young mothers to listen and learn from the things I wish I had done a little differently.  

The following may seem like a small thing but it is not.  One of the things I would do differently is Christmas.  I let it get out of control.  When the first couple of children were small I set the precedent and did not look to the future.  I over-bought for the kids and didn’t know how to stop it once it was started.  I love the new idea I have heard from several young mothers.  They limit their gift giving to four things and ask grandparents to limit their gifts as well.  The idea I have heard is that kids only receive “something you wear, something you read, something you want, and something you need.”  My kids are not necessarily greedy but they expect things that they should not have been taught (by me) to expect.  Teach your children about giving more than receiving at Christmas time.  I wish I had done that.

I hesitate to share some things for fear that people might think I am boasting. That is not my intent here.  Here goes:  I have been stopped by complete strangers many times over the years and complimented on the behavior of my children, in restaurants, in department stores, while grocery shopping, at church services…  Of course, the first question was usually, “Are they all yours?”  There are two things I’d like to say about this.  The first is that I was probably way too hard on the oldest children, especially the firstborn.  From the time he was a toddler he had to tow the line.  There was not any compromise.  He was expected to obey and to obey immediately without question.  He was loved, and played with, and read to, and rocked, but he was never allowed to let the terrible-twos rear their ugly head.  He never threw a tantrum that was ignored or sassed his mother unless it was addressed.  I’m NOT saying that parents should allow their children to be unruly or rebellious.  I am saying that I now know some things I did not know then.  Kids should be able to express themselves once in a while without fear of a spanking, and an occasional tantrum from a small child is only “normal.”  I wish I had been a little more understanding and given a few less spankings.  My younger children were given a little more leniencies when they misbehaved.   

The second thing I’d like to say on this topic of well-behaved children is that I now fully understand that some children are much easier to train and mold than others.  Some kids are even easier to love than others.  My first five kids were typically developing, easy-going, fun kids.  I had no idea that there were kids out there who were unable to follow directions because of a disability.  I had never heard of “sensory” issues or many of the things I have dealt with since Tate was born.  My regret here would be because I was judgmental of many others whose children did NOT obey them.  I felt superior because my children were well behaved.  I regret my thoughts and attitude!  Don’t make my mistake and look at another mother and judge her harshly.

I do not "regret" adopting our high-maintenence, special needs child.  I wish her birth mother would not have been drinking alcohol during her pregnancy but there is nothing I can do about that.  I have already written a blog post in the past called  "Would I do it over again?"  I am inserting a portion of it below.  Then I will continue with my BIGGEST regret concerning the rearing of my children.

Once in a while people ask me if I would do it all over again.  Would I still   adopt Sydney?  Honestly, I think I would, but perhaps it depends on what day I was being asked.  I think I would because I love her with all my heart.  I think I would because I cannot bear to think about where she would be or what she would be doing if she was still in Russia.  I think I would because she has a soul and I want her to go to Heaven.  I fear that someday my answer will change.  *Thirty percent of people in prison had birth mothers who drank.  That scares me.  If a person has brain damage that keeps them from being able to make good decisions, how are they to obey laws?  If a person has little or no impulse control, how can they be kept safe? 

No one has ever asked me the same question about Tate, perhaps because he is not adopted.  If I could turn back the clock, would I still have planned one more baby, the year before Tate was born?  I would not have.  There, I said it.  I would not have conceived a baby, knowing he would have autism.  I think anyone who is being honest would say the same (however, I could be wrong.)  Autism has drained me emotionally, mentally, physically, and financially.  Having said that... I adore Tate.  My world revolves around Tate.  I am not a patient person, but I almost never lose my patience with Tate.  He brings me a lot of happiness and he has taught me a lot of things.  Although I have been drained in many ways, Tate and autism have helped me to grow spiritually.  I see things much differently than I used to and I am a much better person than I was before Tate was born.  The main reason I would not have purposely conceived a baby knowing he would have autism doesn’t have as much to do about what autism has done to me as it has to do with what autism has done to Tate.  I see him struggle to fit in and know he will never be able to understand the world around him.    

I’ve said it before and I will say it again:  The phrase “Everything happens for a reason” is one of the most ridiculous things I have ever heard.  God does not give people autism and God does not cause women to drink so their babies will be born with a lifelong handicap.  That whole idea is absurd.  It is true that we can make the best of a bad situation and grow stronger because of it but there is no divine reason a child is born with a handicap.    

None of the above thoughts or feelings really matter in the end.  Both kids are here.  Both kids are mine.  Both kids are handicapped.  Both kids are loved.  Both kids bring me and others so much joy.  I really do love my life. 

*I have since read that the percentage of people in prison with FAS is actually much higher than thirty percent. 

Here it is.  THE BIGGEST REGRET I HAVE WHEN I THINK BACK:  I wish I’d had a regularly scheduled (daily or weekly) Bible study at home with my kids.  I was their Bible class teacher on Sunday mornings and Wednesday nights for much of their childhood and we did often discuss religious topics at home so I am sure they were taught the truth.  We had many people in our homes for Bible studies over the years but we never had a scheduled time to study with our own kids.  We often sing hymns in the car and we have ALWAYS prayed before meals but I regret the lack of a regular in-home study with my kids. THAT is my biggest regret.  If your kids are small establish a time now and make it so important that you schedule other things around it.  If your husband is often gone like mine then do it without him.  When he is home then he can lead and when he is not home then you can lead the study, but do not neglect this and regret it later like I do!