Life With Sydney: Never a Dull Moment

Never a dull moment probably should be my motto. A house full of kids kept me busy for a lot of years. Providing educational and social activities for Tate as he is growing up with autism has kept me busy, especially when he was receiving early intervention. Sydney is what keeps me the busiest now and I’m not sure anything else I have done or seen has compared to her activity level and the demands she (and her disability) place on me sometimes. I’m not complaining, just stating a fact. 

Every day is an adventure to Sydney and every activity has the potential to be very memorable. I suppose it is a combination of her ADHD and her Fetal Alcohol Syndrome (FAS) and her personality. She is a go-getter, always ready to move and move quickly. She wakes in the morning and within seconds is up and running. I’ve watched kids wake many times over the years. They usually stretch, yawn, rub their eyes, roll over and occasionally go back to sleep. Sometimes they wake grumpy and sometimes they wake happy. With Sydney it is the same every morning. She wakes, HOLLERS for me, and jumps out of bed, to race out of her room. 

Sydney's kite

A couple of days ago, about the time I should have been starting dinner, Sydney came in from playing outside and noted how windy it was. She suggested we fly a kite. I have had a kite on a shelf in my closet for years and it has seldom been flown. She pestered me and begged me and nagged me off and on for an hour. I’d given her several excuses because I really didn’t want to run around a field in the wind. When I had run out of excuses and she had worn me down, I got the kite. We went outside and got that kite right into the air. It wouldn’t stay up long and kept nose-diving to the ground. I remembered from my childhood that a kite sometimes needs a heavier tail so I sent her in for an old bandanna. That was just what that kite needed. It flew really well and stayed up for long periods of time. Listening to Sydney laugh was contagious. She couldn’t stop. I didn’t mind anymore that dinner was going to be way later than usual. She was having the time of her life! Sydney was going to have a memory of flying a kite with her mama and I so enjoy hearing my kids laugh hard when they are having fun. One of my older kids once asked me why I liked going to the amusement park with them since I didn’t like to ride the rides anymore. I don’t know if it is the same for all parents; but for me, watching my kids have fun is one of the “funnest” things there is to do.    

Shawn got home about the time Sydney and I were winding up the kite string to head back inside. Sydney told Shawn all about the kite and showed him a few pictures I had taken on my phone. When Sydney has a really cool experience, Shawn often says to me quietly, “I’ll bet none of those other kids from that orphanage in Russia did that today.” It makes us so happy for Sydney but so sad for all the ones that didn’t go home with anyone. Can you imagine how their days are spent? I suppose, not knowing what they are missing, might mean they aren’t sad about not having it. I don’t know. I do know I am so thankful my God answered our prayers for Sydney, and that she is in our home. She teaches me constantly.

Sydney and Grandpa at the Sale Barn

Sydney sees so many ordinary things as extraordinary. Revolving doors, escalators, and automatic car washes, are as good as any amusement park ride. She loves it when we drive under an overpass because she says she feels like we are in a tunnel. Sydney sees beauty where few others would. Sydney loves animals; and a cow is, by far, her favorite animal. We are planning another trip to the sale barn soon so she can watch cows on the auction block again all afternoon. She would rather do that than anything else we could think of to do. We never pass a field of cows that she doesn’t call out to them. She says things like, “You are beautiful! Eat that grass and stay healthy! I love your color!” Then she exclaims to me over and over about how sweet cows are.  

Sydney thinks her grandparents’ home is a wonderland. There is a cat that will play with Sydney’s hair if she lays on the floor, a tire swing, and her grandma’s walker to push around. A ride out to the pasture to see grandpa’s cows is the high point of any day. Tuesday, Sydney saw chicks at the feed store in town. She was absolutely giddy. Yesterday, we went to Kansas City for her quarterly doctor appointment. As we drove off an exit ramp, she hollered, “Red!  I love red!” She was referring to the van in front of us. She just had to holler about the color red. The doctor allowed Sydney to pick a toy out of a box of prizes. She chose a plastic wolf and played with it all day like it was a very expensive prize.   

Today, we went to Kansas City again to take my dad to a doctor appointment. We had to park in a parking garage and Sydney was absolutely enthralled. She kept exclaiming, “COOL!” She got a huge kick out of the paper towel dispenser in the ladies’ room because it was motion sensitive and kept giving her towels without her having to touch anything. She’s seen all these kinds of things before. We don’t keep her from technology. It’s just that, Sydney doesn’t take things for granted like so many of us do. When we got home from that doctor appointment it sprinkled on us a little. She asked for an umbrella and went outside and marched around in the rain for quite some time.  

Sydney's Herd

Her favorite foods are vegetables and when we order from a menu at a restaurant, she always wants me to ask the waitress if she can just order a plate of vegetables. Her favorite toys are very simple. She loves workbooks, hula-hoops, baby dolls, plastic farm animals, and her remote-control car. I bought a 99 cent spray bottle this week to spray my plants with. She has latched on to that like it is an expensive toy. Watering the plants and squeezing that spray trigger has become a new favorite pastime. It reminded me of something I used to keep her busy with. Her tea party dishes have always been a favorite, but letting her pull a chair up to the sink and WASH those dishes with a few bubbles gave her more pleasure than most of us would find in a day at the zoo or another favorite activity. Sydney loves water and if she doesn’t get to take a bath at the end of the day, she feels like she is being punished. It just doesn't take much to make this kid happy.

I know you might be saying, “all kids like escalators, revolving doors, umbrellas, and car washes,” and maybe they do. All mine have; but it is different with Sydney. She seems to experience things with an intensity that my others did not. Maybe it’s the ADHD. Maybe it’s the FAS. Maybe it is from the neglect she had the first year of her life. Maybe it is just Sydney. Whatever it is, its amazing.  

If you liked this post then you might also enjoy this one: It's a mad mad world.

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Summer Vacation

Summer Vacation: It begins in roughly one hundred hours for my two youngest.  How do I know how many hours there are until our summer officially begins?  I look forward to it.  I long for it.  I begin counting the days as soon as the fall semester begins.  I know every teacher work day and every school holiday and anticipate them coming with glee.  I hate handing my kids over to the public school system each fall.  As much as I love my kids’ teachers, and I DO love their teachers, no one can do the things for my kids that I can.  No one cherishes them the way I do and no one enjoys them like I do.  That being said, I cannot provide them with ALL the things they need academically, so I must rely on the school system to help me educate them.  The two youngest especially need a multitude of services and providers to give them an appropriate education. 

I used to be naïve enough to think all moms loved summers so they could be with their kids.  I know now that not all moms look forward to breaks from school.  I can understand how hard it must be for the parents that are employed fulltime, year round.  The school is not only providing an education but is also a way of keeping kids safe while parents work.  The moms I do not understand are the ones who are home in the summer but dread the break and complain all summer long about their kids’ fighting and their boredom.  Sure, my kids fight sometimes.  I make them stop.  I’m in charge around here, not them.  Once in a while I even hear, “I am bored.”  I can’t believe it when I hear it because of all the entertaining things there are to choose from around here.  When I hear those three little words I usually offer a kid three or four suggestions as to how they can spend some time.  If they cannot choose then I choose for them and they get “unbored” pretty quick.  There are always plenty of chores that need doing around here.  A child that complains of boredom is a child that needs a few chores.  Keeping a kid with ADHD and FAS busy and out of trouble is challenging but I can rise to that challenge.  She is mine and I love her enough to do it.

As I said in my post entitled “Don’t Blink,” if you didn’t want kids, then why did you have them?  You had to have known you would be the one spending a lot of time with them.  You surely knew kids sometimes fight.  You had to have known there would be summer breaks from school.  You probably even knew that a parent is a child’s most important teacher.  Stop complaining, especially, in front of them.  Savor the time you have with them.  Be the kind of parent your kids wish you were.  PLAY with them!  READ to them!  WORK with them!  TEACH them!  DISCIPLINE them!  ENJOY them!  Be PATIENT with them!  APPRECIATE them!  LOVE them!

I have three that have flown from our nest and another will leave in the fall.  Do I miss them? Sure.  Do I dread them leaving home?  No.  You might wonder, since I dread giving them to the public school in the fall, how I manage to send them off to college in a far-away place?  It is a very different thing for me.  An 18 year old going away to college is a goal I have worked toward with them their whole lives.  My husband and I told them from their birth where they would go to college.  It is a place we feel really good about, a place that teaches the same things religiously that we do at home.  I celebrate when my kids leave home as young adults.  They are ready.  They are the people they are, partly because I savored their summer vacations.  They watched me count down the days of that last nine weeks of school and treasure their summer break, wishing it would never end.  Their self-esteem did not suffer because their mom, the person who loves them more than anyone else in the world, did not dread summer breaks.  Dreading the summer home alone with your children?  Shame on you.

"Trust in Jesus and lean forward." Tate Smith

I’ve been helping my two youngest memorize some simple scriptures lately.  Sydney has retained a lot more than I thought she would.  I’ve been really proud of her.  Tate is not doing quite as well, mainly because he is harder to motivate, I think.  His paraphrased version of Proverbs 3:5 shows me he is trying though.  The actual verse is: “Trust in the Lord with all your heart,
 And lean not on your own understanding” but Tate’s rendition was: “Trust in Jesus and lean forward.”  I know that our God is understanding and knows Tate’s heart and abilities.  Autism may keep Tate from ever being truly accountable but I am determined that he will learn as much as he is able to, for as long as I am able to teach him. 

Whatever our age or abilities, God expects us to give Him our best.  He wants us to be zealous, not apathetic (Revelations 3:16.)      

Tate has a wonderful relationship with God.  Tate talks to God like he would any of us that he can see in the room with him.  A few nights ago, Tate burped during his prayer and asked God to excuse him.  During the same prayer Tate reminded God that it was Levi’s birthday and paused to look at Levi and say, “Happy Birthday Levi.”  It is great the way Tate includes God in the “conversation.”  It might appear a little irreverent to some but Tate doesn’t have the mind or the abilities of the typical eleven year old.  He is stuck somewhere around age five in some areas.  In others he seems to be around age eight to me.  This is hard because he is almost six feet tall now and he doesn’t appear to be handicapped at a glance.  I’m so glad that God knows our hearts and does not judge on appearance.  “For the Lord does not see as man sees; for man looks at the outward appearance, but the Lord looks at the heart” (1 Samuel 16:7.)

Tate may never be able to preach a sermon or teach a Bible class but who can know what influence he will have on others?  He has already taught me so much.  I am a much better Christian for having known Tate.  I prayed for patience for many years and wondered why I didn’t seem to be able to make any gains with that one fruit of the spirit.  And then came Tate.  He was the answer to my prayer for patience.  I have patience with Tate, and because I have patience with Tate, I have been able to expand on that in so many other areas. 

I overheard a mother and preschooler talking a while back.  We all happened to be developing pictures at the same time and eavesdropping was unavoidable.  The little girl was telling her mother the story of Jonah being swallowed by a whale.  The mother said, “You know that is just a pretend story.”  The little girl said, “Daddy said it was true.”  The mother replied, “SOME stories in the Bible are true but some stories are just pretend.”  The little girl said, “But Daddy said the whole Bible is true.”  The mother changed the subject.  I was blown away.  I had just overheard a mother discouraging her daughter from believing God’s word!  I kept hoping the little girl would go home and ask her daddy to explain to her mommy that Jonah was a real man who was swallowed by a real whale and coughed up three days later.  Why do some people want to limit God’s power?  Can we really pick and choose which Bible stories we want to believe and which ones we want to disregard as fairytales?  Jesus does tell some parables in the Bible but He is always clear on what is a parable and what is not.  If we think a whale swallowing a man is not believable, then where do we draw the line?  Did Jesus REALLY die and come back to life three days later, or is that just make-believe too?  Did God really create the earth in six days or do we have to buy into the big bang and evolution?  It takes a lot more “faith” to believe that something came from nothing and life was started in a pool of goo than it does to believe in God’s ability to create life.  It takes a lot more “faith” to believe the world and animals evolved for millions of years with everything happening by chance, than it does to believe the world is six or eight thousand years old and the Biblical account of creation is accurate. 

God tells us to teach our children about Him (Ephesians 6:4, Proverbs 22:6.)  

Start when they are very small.  I have a really special memory of my oldest.  He was just a toddler.  My husband had got into the habit of asking him every Sunday, on the way home from worship, what he had learned in Bible class.  Our boy didn’t have a lot of language yet; he wasn’t even out of diapers.  I had taught the parable of the Good Samaritan (a story Jesus told.)  My little boy excitedly told his daddy, “There was a man.  And the first one didn’t.  And the second one didn’t.  But the third one, He DID!”  That, in a nutshell, was the story of the Good Samaritan.  That little boy has grown up.  He is a youth minister now and preaches regularly.  I listen to his recorded sermons on the internet now and I am so proud.  I taught him the truth.  He is well on his way to an eternal home with God.  It doesn’t happen by accident folks and it cannot happen if you are not teaching your Children the Truth about God.        

People today believe some pretty far-fetched things.  I’ve heard adults tell children that people become angels when they die.  If you study the Bible you will learn that angels are created beings, just like people.  People have a soul that is eternal but people do not turn into angels upon death.  I’ve heard adults tell children that their pets will be in heaven, waiting for them, while the Bible clearly teaches us that animals do not have souls and do not have an afterlife.  I’ve heard adults telling children lately that homosexuals are just living an alternate way of life, while the Bible clearly teaches that homosexuality is an abomination and unnatural (1 Corinthians 6:9.) 

Recently I have had the opportunity to discuss some religious topics with non-religious people, people who believe in God but want no part of organized religion.  I am always amazed at some of the ideas people have and what they base those ideas on, since they do not know much scripture.  Once, I had someone tell me that when it snowed, they knew it was their mom and dad sending them something beautiful from heaven, as if our souls will control the weather some day.  This is not taught in the Bible and is actually contrary to what God does say about those who have died (Ecclesiastes 9:5.)  Someone recently told me they were sure their father was getting to go hunting in heaven.  I have found nothing in the scriptures to support anything like that.  I have even been told that there will be margaritas in heaven.  To believe there will be liquor in heaven when God calls drinking sinful on earth really leaves me scratching my head (Proverbs 23:31, 1 Corinthians 6:10.)  Where do we get these distorted beliefs?  We cannot make up our own “heaven” and base heaven on what we hope it is going to be like, and then expect it to magically appear for us when we leave this life.  Heaven is not a magical, mythical place that will be individualized for each of us.  Heaven is described in the Bible in many places and we are given clear instructions on what we need to do to get there.  Hell is described also and it doesn’t take anything to get there.  Nothing.  Apathy will do it.  Telling your children that Bible stories are not real will get YOU there.  Sadly, it will get them there too.  Please people.  Teach your children about God.  Heaven and Hell are real places.  Ignoring them will not make them go away.

What I Say to Future Educators

I am sometimes invited to speak about special education and my two youngest children to a class of college students who are going into the field of education. I got to do that yesterday. I believe this was the fourth time I have done this with this particular college professor. I did a couple similar talks several years ago at a different university and I have given a couple short talks about early intervention at autism conferences. The class yesterday was two hours. I usually get through it without choking up much and what I talk about is sort of becoming “old hat” so it goes smoothly. This time I choked up a little more than I have in the past. I have a harder time talking about the kids’ futures than I do their pasts and there were some questions this time from the students about future plans. I just don’t know what the future will look like for these two precious kids. Tate and Sydney won’t be safe in a world where people take advantage of other people. I don’t anticipate them ever being able to manage money or understand the value of money. They are both very eager to please and trusting of anyone that looks their way. Teaching “stranger danger” is not something that is possible. Job skills and opportunities will be limited for both of them. It is scary and depressing. 

Those thoughts still swirling in my mind, and a rougher-than-usual morning with Sydney today have left me emotionally exhausted. So… my therapy will be to blog.

I do enjoy speaking to the college kids and I feel it is very important to raise awareness. These future teachers need to understand just what they will be facing and I hope I help them understand the difference they can make to a family of a child with special needs. 

I always want to tell the class about early intervention, the huge difference it made for Tate and Sydney, and the cost that came with it. I want the students to understand how vested a parent is in their child and his wellbeing. We parents have often spent all our savings and mortgaged our homes in our efforts to give our special needs kids all the advantages and therapies there are to offer.

Then I tell the students about the first experiences we had with the public schools. I handed my little guy over, kindergarten ready (academically, not socially) to some of the most wonderful general education teachers I have ever had the pleasure of knowing. But then I tell about how disappointed I was in the IEP process. 

I watch their mouths drop open when I tell a story about a time when Tate was six and held his pencil up and said “pow pow.” He was taken to the principal. There was a zero tolerance policy for threats and violence. Because kids with autism do not often pretend, this whole event should have been celebrated as  progress. It would have been celebrated by the autism experts I had surrounded Tate with for his early intervention.  Instead it was blown out of proportion and a little boy who did not have the receptive language to even understand what he had done wrong, was made to feel badly for pretending.

I tell the college class about the time Tate’s IEP contract was broken because a new student who was much more handicapped than Tate, needed his para support worse than he did. He was on his second day without support when I found out about the situation. There was no substitute called for and no plans to hire another para I was told. Tate’s IEP called for “support throughout his day, from drop off to pick up.” When I asked why I wasn’t told he would no longer be receiving the contracted services, the response was, “It never occurred to me that you would want to know.” Yes, the college students’ mouths drop open again. I tell them about the fit I threw in the principal’s office and the phone call I made to the director of the special education program for our district. I tell them about the substitute para that showed up at school a couple of hours after the fit I threw and how she was kept until the end of the school year so Tate did not have to share his para or be without a para again. I tell them how upset a mom can and does get when her child is not safe and not receiving an appropriate education. 

The question was asked yesterday if Tate goes to summer school. I told the college kids the following story and once again saw their disbelief. I asked for an “Extended School Year” (ESY) every year and was told that he did not qualify. Per law, he would have to lose more over the summer than he could regain in the first nine weeks of school. I asked how that was measured. They would need data. I asked for them to take the data. We got the data and it did not prove that Tate lost more than he could regain in nine weeks.  So, he did not receive summer school. Now, here’s the unbelievable part… After four years of being denied summer school by this special educator, a new teacher asked me why Tate had never attended summer school. I scratched my head and explained the “law.” It turns out, that the district policy is that any child can have ESY that is recommended for it by his teacher. Tate has since been going to summer school. He could have made much more progress those first years in public school with a whole team effort.   

I ALWAYS make sure the college class knows the difference one person can make on an IEP team. I talk to them a lot about how important communication is between home and school. I tell them about the amazing team Tate has now. He is happy and doesn’t cry every day before school like he did most of those first four years. I trust Tate’s special education teachers now and we are a true team, openly communicating often and providing each other with lots of information that helps Tate to be successful. ONE TEACHER CAN MAKE A HUGE DIFFERENCE IN THE LIFE OF A CHILD AND IN THE LIVES OF THAT CHILD'S WHOLE FAMILY!!! One teacher can set the tone for whether or not the child will have a successful year or a year of misery. 

Figurative language always comes up in these sessions with the future teachers. I talk about how hard it is for a child with autism to understand idioms, metaphors, clichés, and words that have more than one meaning. I try to explain the concrete mind of a child with autism and the need for simple, clear instructions. I talk about how easy it is for a child with autism to misinterpret instructions. I illustrate the need for sameness by talking about routine and giving examples of how something like having a substitute teacher could ruin Tate’s day. I talk about sameness being so important that Tate has taken the same lunch everyday for five years: a peanut butter sandwich (no jelly), a baggie full of chips, and two cookies. I tell of the day the chips were somehow left out of his lunchbox and the fallout that had to be dealt with. I explain what a melt-down looks like and how it escalates. I talk about how great and wonderful and smart my kid is.  

It is so hard not to make my kids, the kids I adore, sound like burdens when I talk to these classes. I try to remember to talk about the positive characteristics my kids have. However, the purpose of the parent panel is not to make our lives sound rosy, but to talk about what the future teachers will likely see in kids like mine and how to best handle them, from a parent’s perspective. 

I talk more about autism than I do Fetal Alcohol Syndrome (FAS) for a few reasons. I know a lot more about autism than I do FAS due to the information available. One in 54 boys are now being diagnosed with autism and the stats are not nearly as high for kids with FAS. So, the college students will probably see and deal with a lot more kids with autism than the do kids with FAS. And, Tate has been with me eleven years and Sydney eight so I have a few more Tate stories than I do Sydney stories. 

Before I began to talk about FAS last night and my precious Sydney, I took a moment to beg the young women in the class, not to ever take a single drink while they are pregnant. Then I explained why.

I always try to describe the hyperactivity and the lack of impulse control but I’m never sure I do it justice. On one hand Sydney is hyper-vigilant and you cannot get anything past her, but on the other hand she cannot stay focused long enough to learn, without her medications. I tell them of the constant “pestering” and the “space invading.” I speak of the never ending talking that Sydney does and her inability to sit still without the help of her medications. I tell them about the lack of friends and then I choke because I know there may never be friends. Who wants a friend that makes you work that hard? Yesterday, as I took a deep breath to recover my composure, the class professor stepped in and told of other children she had seen in classrooms over the years. She likened kids like Sydney to a buzzing fly that the other kids cannot swat away. It always comes back, and when you are eight years old, you do not know how to nicely say, “Get lost, you are bothering me.” It was a great analogy. I love that little fly but her peers do not and will not.   

I explain to the class that I was a mother totally reluctant to medicate my child in the beginning and now I have done a complete turn around. Before the medications, Sydney couldn’t learn. She struggled to learn her colors. She couldn’t do simple one-piece puzzles or a shape sorter. She couldn’t count or learn her letters. The medications slow her down physically, help her to focus, and now she can learn. I say to the class, “Sydney’s medications have changed our lives.”  She is reading at grade level and her comprehension has recently caught up to her peers as well. I have to admit though, there has been no headway made in math. She stays in kindergarten math, never showing any progress, although I am certain her teachers are working diligently to change that. 

As I left the classroom, many of the students thanked me for giving of my time. No thanks was necessary. Any hope at all that I made a difference in how they will treat their future special education students is thanks enough.