Making Demands In The Name Of Autism

My son has autism. I am his advocate. I make sure he has the things he needs to be successful in school and in the community. Usually I can get what he needs by asking nicely. Occasionally I have had to beg and a few times I have had to become demanding. Once I even raised my voice. But I do not feel I have ever asked for anything that was unreasonable. Of course, that part is a matter of opinion.

Even though I do not feel I ever asked for anything unreasonable, I have not gotten one hundred percent of what I asked for either. I have never filed a lawsuit. Oh, I could have. Once, I found that Tate had been without his para support at school for a day because another child had moved into the district and she needed support too. Instead of hiring another para, Tate’s para was supposed to supervise both small children and basically be in two places at once. Another time Tate was left to wait for me to pick him up with no adult support. When I pulled up he ran between some moving cars, then dropped his artwork and chased it across the parking lot. He was six and his IEP said he was to have full support from drop off until pick up.  

But this post is not about IEPs or dealing with the professionals that specialize in our kids’ needs. This post is about making unreasonable requests or demands of people in our communities in the name of autism. In my opinion, a reasonable request is when I ask for a lid on a drink so my child does not spill. A reasonable request is asking for a few extra minutes in the bathroom because he has trouble with getting his pants unbuttoned and buttoned. Ramps, service animals, Paraprofessional support, visual schedules, and things like pre-boarding an airplane are reasonable accommodations in my opinion.

Schools are required by law to use accommodations and modifications for children with handicaps. Of course, businesses and organizations are also obligated to serve people with handicaps. Discrimination is illegal. But not everything we do not like is discrimination. I do not believe businesses and organizations should be required to jump through hoops of fire to prevent lawsuits. If they are making a reasonable effort to accommodate people with special needs then they should not fear the autism community. Recently there was an incident in the news about a mother of a child with autism requesting a hot meal for her child on an airplane. The mother mentioned that her child might scratch someone if she did not get a hot meal and the pilot landed the plane and the family was required to get off the plane. I think the pilot over reacted for sure. But he was within his rights as a pilot. The autism community was up in arms. Not everyone in the autism community thought the child with autism should be entitled to a hot meal but it seems the majority believed the airline employee should have done everything in her power, including giving away one of the first class passenger’s meals so the child with autism would calm down. I’m not so sure. Trying to put myself in the shoes of the flight attendant and pilot, I consider the rules and regulations I have to follow to keep my job. Trying to put myself in the shoes of the mother calming her child, I consider how awful it is going to be for the next few hours for everyone around us (including my child, of course) if I do not get her what she wants. I cannot be sure what I would have done in either situation.

I have a child with autism. I am sympathetic to children with special needs. I advocate for two constantly. Twice recently I have found myself in a crowd of people trying to hear the instructions being given while a child with autism screamed constantly. Recently I was on a cruise. I was listening (actually just trying to listen) to the procedure involved in abandoning ship if it became necessary. Does the screaming child have a right to be on a cruise? Of course! Do the parents of the child have a right to be participating in the activity I am involved in? Of course! Does the crowd of 300 people gathered for the ship’s safety instructions have a right to hear the safety instructions? Yes. We do. But we did not hear everything. Ironically, the bit I was able to hear was regarding handicapped people, women, and children, being given seats on a lifeboat first. We have come so far. We as a society do value the lives of those with disabilities. They are no longer locked away in institutions. Thank God! They are now included everywhere we go. And, they are often listed as top priority in procedures like this one. Most of us would not have it any other way. But at what point does the right of 300 people who need to hear, supersede the rights of the child with autism and the parents? Or do the 300 people all have to give up their rights anytime a child with autism is present? If the ship crew had asked the parents of the child with autism to remove her from the presentation, would they be threatened with a lawsuit immediately? What is the solution? 

People with disabilities are supposed to be given equal rights. It is the law. But are we asking for much more than “equal” for our children? Can we demand things in the name of autism that seem a bit unreasonable (or more than just a bit unreasonable) to the people around us? Can we demand a hot meal on an airplane when it is not a part of the procedure? Can we demand our child get a cheeseburger when we are dining at a Chinese restaurant? Can we demand our child go to the front of every line at theme parks in the name of autism? It is so hard on our kids to wait. But, what about typically developing toddlers? Isn’t it awfully hard for them to wait in lines too? Why don’t we bump all the two year olds to the front of the lines as well? Sometimes I am not sure we are asking for fair accommodations. Sometimes I believe the autism community is making requests and demands that are unreasonable, all in the name of autism. And sometimes I think we are getting a bad reputation for making unreasonable demands. I really do not want everyone around me to fear a lawsuit if Tate does not get what I ask for.

Just some things I have been thinking about. I would love your feedback. I’d rather not start a lengthy debate about hot meals on airlines as that has already been done over and over in the autism community and I think everyone is weary of it. 

Autism and Empathy

Not too long ago I accompanied my dad to a doctor appointment. It was wet and very cold outside. The parking lot and sidewalk were a bit slippery. As my dad and I were walking into the building a car pulled up, and a very frail, elderly woman got out of the car. She crept slowly toward the front door, one very tiny step at a time. She looked like she might topple over, as she was so unsteady on her feet. I stepped toward her and offered her my arm. She gladly took it. I could see she was not going to make it far without some help, even after we entered the building. I walked her very slowly to the office she needed. She was afraid her husband would not know where she had gone so I walked back to the front doors to let him know she was waiting in the office. I waited for what seemed like a long time. Then, I saw him, slowly approaching the front door of the building. This man was bent and decrepit, walking with a cane. Every step was almost painful for me to watch. I stepped through the doors, back out into the cold, and offered the man my arm. He was just a bit gruff, and declined, indicating he had the cane. I explained to him his wife was waiting at the end of the hall in the office. He thanked me and told me his wife never would have made it without help down the hall. He said he always helped support her if she had to walk more than a few steps. This elderly man was barely able to keep himself upright, and moving as slowly as I’d ever seen someone move, yet he was normally his tottering wife’s support! I walked with him to the office. I chatted with both of the older folks for a few more minutes. As I left, I stopped and quietly urged the receptionist to use a wheelchair to help the woman get back to her car.

I have thought about those folks several times since then and wondered how they are doing. They appeared to be long past the ability to live independently. I hope they are safe and well, and together.

What made me stop and offer my arm to the woman? What made me return to ask her husband if he needed help and then almost physically ache when I saw how difficult it was for him to walk? What made me press the receptionist to help them with a wheelchair? What makes me wonder about them from time to time? It’s a kind of caring concern called empathy. Having compassion for someone and being able to put yourself in their shoes motivates people to stop and help others. Those two elderly people touched my heart. But where does empathy come from? Is it something that we are born with? Is it something we are taught? Does it grow gradually over years, starting small and then building?  

My four boys. They are alike, yet so different.

I’ve discovered a few things about empathy since I started raising kids. One of those things being: how it is acquired. Years ago I might have argued that empathy will not come naturally to children and has to be taught. And then my second son was born. From his toddlerhood on I saw a kid whose heart was tender and caring. He wanted nothing more than to make others happy. If he had a cookie he’d give it away. While I was trying to teach my other children to share, I was trying to teach this little guy to stick up for himself. I remember showing him that he should break his cookie in half and give half away but keep some for himself. He is one of the most caring people I have ever met. But I cannot really take credit. For him, it just seemed to be there from the beginning. My other children did have to be taught empathy and they have all become such caring and wonderful people. It took a little longer for some of the kids to learn to put others’ needs before their own than it did for the others. Being the parent of seven I saw a lot of different personalities and was amazed often at how differently they all learned and needed to be taught. Sometimes I just wanted to “knock” some empathy into them, showing that I myself needed to become quite a bit more empathetic at times.

I said all of the above to finally get to this. One of the characteristics of autism is aloofness, the lack of interest or concern for others. It is also hard for a child with autism to generalize the things they learn. In other words, something a child learns in one situation will not be applied in another setting. So teaching Tate about compassion and empathy has been very hard. I see progress though. He sometimes asks me if I feel better if he knows I have an ache or pain. He has started carrying the laundry hamper down to me when it is full without being told because he knows it makes me happy and it hurts my back to carry that full hamper. He has learned to try to listen to his friends at school when they talk to him because he knows it is important to them. Once in a while Tate offers to share things like cookies with his siblings and that is fairly new. All these things have been taught to him individually. I could not just explain the golden rule to him and expect him to apply it to his life. I have to teach it to him for each scenario I’d like to see him use it in.

Tate will do what he is told usually. He does want to please people. Like most people with autism he is a rule follower. He just has to be told the rules. The hardest part of teaching him to help others is getting him to recognize, without being told, what someone’s need is. Being young is part of it of course. Probably a lot of thirteen-year-old boys would walk right past an elderly woman who could have used their assistance because they do not realize what is needed. But there are many things Tate should have mastered a long time ago that he still struggles to understand.

For example: For years we have worked on the etiquette that surrounds doorways. It just seems to come naturally for his classmates to catch a door that is about to close and then hold it for the next person to grab. I don’t imagine anyone has ever had a door holding lesson for any of those kids. Instead they were taught to be kind and polite as a general rule and have begun to care for those around them and they act on those feelings throughout their day. They would never consider letting a door slam on a classmate. They can think about how that might feel and empathize with the one behind them.

When Tate comes to a door, if another person is holding it, he just squeezes through, never reaching to help with the door. If he approaches the door at the same time as another person he never offers to open it. He waits for them to open it for him. If he did have it open and another person was right behind him he’d just let it fall closed. He wouldn’t wait for them to reach out and grab it and he certainly wouldn’t hold it open for them. It is not that he is UNKIND. It is just that he does not think about being KIND. It does not seem to occur to him. Tate’s teachers and schoolmates have worked with him on this type of etiquette a number of times over the years and so have I. I remind him lately in the mornings before he exits my car to hold the door for the student behind him when he enters the school building. So, he has started trying to calculate his entry into the building so no one is around him at all. He slows his pace if someone else is walking up so he won’t have to try to figure out which of the etiquette rules applies. All these things that everyone else learns easily are still a mystery to him.

Tate might be able to quote the golden rule, but he needs to be taught how it applies in every situation individually. And he won’t just learn it by example. He has to be taught with direct instruction. We can teach him to hold the door for someone, teach him to share a package of cookies with his siblings, teach him to be attentive when his friends at school are talking to him, and teach him to take turns with a video game, but when a new situation comes up, one he has not been taught about before, he probably will not step up and behave as if he cares about anyone’s interest but his own. There will be literally hundreds, maybe thousands of things he will need to be taught. It becomes more evident to me every day.

This morning, my husband and I went out for breakfast. We finished eating and were just visiting when my husband noticed there were a lot of people in the lobby waiting for tables. So, instead of lingering at the table, making others wait longer, we jumped up and gave up our table. That is not something anyone had specifically taught us as children. We do it because we want to be kind and compassionate. We want to treat others the way we would want to be treated. Empathy comes naturally to us now. We have generalized that golden rule to all situations throughout our day. Can you imagine what it would be like if you could not generalize the things you learn in one situation and apply them to another? Can you imagine what it would be like if you had to be taught what was expected of you in every situation you might run into? Can you imagine what it would be like if your family were constantly becoming exasperated with you for not doing the right thing when you do not even know what the right thing to do is? People with autism are not necessarily rude or uncaring. Sometimes they appear rude or uncaring because they just do not know what is expected of them nor can they figure that out based on similar experiences. And so I teach empathy. And I explain empathy. And I have empathy for the one I am teaching empathy to. He is like the elderly lady I helped down the hall in so many ways, and I am like the man. Tate needs my support and guidance to make it a short distance, yet I am wobbly on my own proverbial feet at times. I can drive him right up to the door of empathy and I have to hope others are there to offer him their arm or even a wheelchair and help him make it down the hall. 

You might also like: Kindness and Mistletoe
And.... I wrote another blog post expanding on the door thing: It's not that complicated!

Ten Ridiculous Questions and My Facetious Answers

I am the mother of seven children. I love having a large family and cannot imagine my life any other way. I have been asked a lot of silly questions over the years. Here are ten of the most frequent ones.

1. Are they all yours? Yes. Yes they are. I gave birth to six and adopted one of them. I claim them all. Once in a while a neighbor kid gets mixed in and I get a little confused when I count heads though.

2. Do they all have the same father? Believe it or not, complete strangers have asked me this question. It never fails to amaze me. And yes. Yes. I've been happily married for thirty years now. The oldest is twenty-six.

3. Are you Catholic? No. I am not Catholic. I’m pretty sure all religious groups allow married couples to reproduce.

4. Were they all planned? I’d really love to talk to you about the origin of each one of my children’s lives but that would be kind of weird. And, the kids are standing right here listening.

5. You must homeschool, right? Ummmm. No. We don’t. Not that there is anything wrong with that…. 

6. How do you feed them all? Well, my husband works and brings home a paycheck and then I go to the grocery store. But we only have six plates so they have to take turns… 

7. Are you done? Well of course I am done. Who in their right mind would have eight kids? That is just a ridiculous number of children. I cannot imagine how we would be able to feed them all.

8. How can you afford seven children? We can’t. We will still be paying student loans off when we are in the nursing home. Got any spare change?

9. How do you keep them all straight? Give me a break. There aren’t a hundred of them. Only seven. I know their names and their ages. I even know a few other things about each of them too.

10. Do they fight? They do occasionally fight. They are siblings. 

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.