Stepping Up to the Challenge

It is often said, “If you meet one child with autism, you’ve met one child with autism.” meaning each child is unique. I say, If you meet one autism parent then you’ve met one autism parent.” We are not all alike. Just as our children with autism are on a spectrum, so are we. Our children are unique, yet similar, and we are too. Some of us handle the stress and strain a little better than others. Most of us give it our best because we are motivated by a powerful force. Love.

Some of us have children with huge handicaps, while some of us have children who function at a much higher level. Some of us have children who never learn to speak, while others have children who do. Some of us deal with sensory meltdowns and others do not. Some of us have more than one child with autism, while some of us have only one. Some of us have enough money to do all the recommended therapies and some of us do not. Regardless, most of us step up and do the best we can, with what we have, to help our children meet their potential.

I occasionally hear, “God only gives special kids to special people.” Yet, there is no list of requirements needed to qualify to have a child born with autism. Children with autism are born to ordinary people every day. We have no credentials or qualities that make us stand out. Our little ones are fed, changed, rocked, cuddled, sang to, played with, taught, tickled, read to, and loved. We do all the things other moms and dads do and then we hear the word “autism” from a doctor.

When our children receive an autism diagnosis, often around age two or three, we do not suddenly become more special on that day than we were the day before. We only step up to the challenges we are faced with, just like any loving parent would for their child.

My thirteen-year-old son has high functioning autism. He can talk but he cannot have long conversations. He has a lot of anxiety. He is developmentally about eight-years-old and will probably never be able to live independently. Some days I feel a little sad about it but mostly I do not. He is a great kid with a super personality. I try to concentrate on the things he can do instead of the things he cannot.

People often say to me, “I don’t know how you do it!” or “You are amazing.” and “I’d never be able to do the things you do.” I always respond with, “I do it because I have to. You would be able to do the same for your child.” 

I had lunch with a dear friend yesterday. Her son has low functioning autism. He cannot talk. He does not sleep much at night. He is an escape artist and cannot be left alone for even a minute. Some days my friend feels a little sad about it but mostly she does not. Her son is a great kid with a sweet disposition. She tries to concentrate on the things he can do instead of the things he cannot. After hearing some of my friend’s latest stories about her son, I heard myself saying, “I don’t know how you do it! You are amazing.” She responded with, “I do it because I have to. You would be able to do the same for your child.” Of course I would.

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.

Choosing My Nursing Home

This is a follow-up to my last post entitled “Don’t blink” I started my blog to raise autism awareness and encourage people to interact with people who have special needs. So the way that post was received took me by surprise. I received a lot more feedback than usual. Many people told me it was their favorite post to date. I decided I’d take another stab at blogging about parenting, in general. Thanks again to those who have encouraged me.   

Last week I accompanied my dad to a pre-op meeting. He is going to have some knee surgery. He has a terrible cold and his knee is bothering him so I convinced him to sit on a bench while I went to retrieve the car, saving him a few steps. He was reluctant to let me, afraid to inconvenience me, but I was able to persuade him to allow me to save him the extra exercise, which he did not need.

As I walked away, I wondered how many times my dad had gone out into the cold to do something for me, or how many hundreds and thousands of steps he had saved me over my lifetime. I wondered how many kind deeds he had done for me that I could remember and how many that I will never even know about. Why did I offer to save him those steps? Because I love him. If you have good parents you will understand. We love our parents because they taught us what love is, by loving us first. If asked to describe the devotion involved in a child/parent relationship, I’m certain I would never be able to put the depth of love and commitment into words. 

My mom and dad are in their eighties and have been parenting me for almost fifty years. That’s a long time of putting someone else’s needs first, counseling them, encouraging them, and praying for them. My dad can’t do as much as he used to be able to do. He used to be able to work on hydraulic elevators, and fix almost anything that was broken. He cannot do those things anymore. I’ve seen him struggle to finish much more simple tasks lately. My dad, my hero, a man of steel, sometimes needs me to do things for him now. So, I will be there for him, the way he was there for me. I will let him sit on a bench while I go and get the car. I will help him take care of my mom. I will do many of the things for him that he once did for me. I will put his needs before mine. 

Putting others’ needs first: isn’t that what it’s all about? The golden rule?  ...whatever you want men to do to you, do also to them, for this is the Law and the Prophets (Matthew 7:12). It was Jesus who spoke those words. If everyone lived by the golden rule, there’d be no need for any other rule. My mom and dad taught me that rule. If we were to all teach our children that one thing, we could change the world in one generation. Think about it. 

I hope my husband and I have instilled the Golden Rule well in our own children for many reasons, one being: they will pick our nursing home. (haha)  We’ve had a sort of joke around our house for the past few years with our oldest two sons. When we aggravate them, they sometimes say, “Be careful, I get to pick your nursing home.” It seems a long way off, getting old enough for a nursing home. But in reality, time flies. Our lives are compared to vapors in James 4:14.  As I said in the last post, “Don’t blink.”

As my parents become elderly and I’m living my middle-aged years, my oldest children have become young adults. Yesterday morning our oldest son called home to ask his dad for some advice about a car that wouldn’t start. I wondered how many of those phone calls I have made: “Mom, what’s that recipe for…..?” and “Dad, come quick! There’s a raccoon in my chicken house!” As I listened to my husband’s side of the phone conversation, I could hear how willing and happy he was to help our son, as best he could, over the phone. It’s like coming full-circle for me. My husband and my dad are both very wise men. I’m switching gears here and no longer talking about their ability to help with engine repairs or unwanted varmints. Although their knowledge of mechanics and their shotguns have come in handy over the years, their Bible knowledge and wisdom is what really matters. Our oldest called home a few months ago to ask his dad’s political opinion on an issue. Shawn didn’t give him a short answer, but helped him reason it out himself. After they talked, my son wrote this in a blog post: “My dad is the smartest man I know. He’s not a doctor, lawyer, scientist or professor. Ironically, he didn’t even finish college. I’m talking real-world-experience-smart. He’s always pushed me to make hard decisions and trained me to learn from my own mistakes—mistakes, by the way, that he encouraged me to make on my own. This life is a learning experience, and my dad’s my favorite teacher.”  

That blog post, written by my son, touched me and made me realize that our son sees his own father the way I see mine. I wish everyone had the kind of dad I have. I wish everyone had the kind of dad my children have.

My wonderful parents

My folks will hopefully be with me a few more years, but years go so quickly for me lately. Is getting old scary? If I live to be their age will the reality of my life ending be terrifying? My parents seem tired but they don’t seem terrified. Their influence will live on in the lives of their children and grandchildren. They have a lot of things to be proud of. The apostle Paul wasn’t afraid of death. He said “to live is Christ and to die is gain” (Philippians 1:21). Why wasn’t Paul afraid of death? Because he knew what waited for him after death. The apostle John tells us that we can KNOW we are saved (1 John 5). If I am sure I will spend an eternity in Heaven then what’s to be afraid of?