Interview Cassie Zupke Author of We Said, They Said – Advice on Nurturing Kids with Special Needs

Interview Cassie Zupke Author of We Said, They Said – Advice on Nurturing Kids with Special Needs

We Said, They Said: 50 Things Parents and Teachers of Students with Autism Want Each Other to Know by Cassie Zupke should be read by all adults who play a role in caring, teaching, bringing up, or administering children with special needs, not only those with autism. I have sat on both sides of Educational Teams as a parent of a child with special needs and as an elementary teacher; therefore, I know Cassie Zupke’s advice is on target. Read our review of We Said, They Said.

On Cassie Zupke’s  interesting web site I read, “When parents and educators argue, our kids lose. So why are good, reasonable parents and skilled, compassionate educators locked in conflict?” Cassie Zupke’s book, We Said, They Said, is what both sides need to channel their efforts to make each school day/year a productive, pleasant time for our kids with special needs.

We were pleased that Ms. Zupke agreed to take part in our Author Interview Series to find out more about her book, about her experience with autism and schools and about the mom of three teenagers who is also a former engineer in NASA’s Deep Space Network.

Lorna: Congratulations on your much needed book, We Said, They Said: 50 Things Parents and Teachers of Students with Autism Want Each Other to Know!

<<Cassie Zupke: Thanks!  I love your website.  There are so many good books out there now that benefit people with special needs, but you can’t read them if you can’t find them.  Your site is a great public service.

Lorna: First tell us about another part of your life when you were an engineer in NASA’s Deep Space Network.  It was a big leap from being an engineer to being the director of Open Doors Now, a non-profit education and support group for students with mild autism/similar disorders, their families and educators.

<<Cassie Zupke: I have to say that life as an engineer on a NASA project was a lot easier and less complicated than life as a parent of a child with special needs.  You go to work, they give you the requirements of what you need to build, you bang your head against the wall a few times until you figure out how to build it, then you put it together and voilà, you get data back from Jupiter.

As the parent of a child with special needs, half the time you don’t even know exactly what the problem is that you’re trying to solve, let alone how to do it.  When you’re an engineer, you have a lot of sources of information and guidance: college, mentors, coworkers – there’s a whole system in place to help you succeed.  As a parent, you’re often moving from crisis to crisis, learning the skills you need as you go along, from wherever you can pick them up.  And when your kids are young, you get thrown-up on a whole lot more than you do on a job site.  Parenting is far more rewarding, but it is more challenging, too.

As far as switching from engineering to running a non-profit, actually, my former job was good training.  When I started the group, I knew nothing about running a business, managing volunteers, how to work with the general public, public speaking, how schools work, or hosting programs for kids.  But I did know that there was a big need in our community for education about autism for families and teachers, support, opportunities for friendship building, and connecting people who could help one another; and I could envision programs that would meet those needs. I also knew there were a lot of wonderful people who would be willing to help me learn the things I needed to build those programs.  It took a lot of trial and error, and a good sense of humor, but through the dedication of our volunteers and supporters, we’ve built a great organization that has helped a lot of people. >>

Lorna: You are the mom of three teenagers, one of whom has mild autism. How is your teen with autism doing? What signs in his early childhood did you notice that prompted you to have him evaluated? What is your advice to parents of young children who feel something is not quite right with their child?

<<Cassie Zupke: When my son was three years old, he was a sweet, beautiful, loving, wild child.  He was smart and curious, but didn’t have the social skills or common sense of typical kids his age.  Instead of pointing at things he was curious about, he’d bring them to me.  He wanted to know about our home security system that was mounted on the wall, so he ripped part of it down and handed it to me.  Cabinet doors, pictures off the walls, table lamps – we had a lot of breakage.

He was a runner, too; he’d take off and not stop when you told him to.  You’d have to physically catch him to stop him.  Once we were at a park and he started running toward this small lake.  He had a head start and I was holding our brand new baby.  I had to hand the baby to a complete stranger so I could run after him before he drowned himself.  I figured the chances were better that the woman wouldn’t kidnap our infant, than that my son would suddenly learn how to swim.

Then when he was five years old, he got into taking apart our toilets.  He flooded our bathrooms so many times that my husband finally drilled holes in the ceiling of the room below our upstairs bathroom so that the water, (clean water from the tank), would drain through instead of bringing down the ceiling.  By the time Jeremy got into school (after being kicked out of two preschools), he had quit running, but he still had his challenges.  In the classroom, he’d throw about eight tantrums a day and often refused to do any work.  His childhood wasn’t easy for any of us.

Now my son is 17 years old, 6’2”, and is in general education classes with no aide.  When he started high school, I pulled him out of honors classes (he can do the work, but can’t keep up with the pace), and I made sure one of his classes was a special education work training program so he could learn the skills he will need when he enters the work force after college.  Now, instead of eight tantrums a day, he gets frustrated once every few weeks.  He takes a deep breath, calms down and refocuses.  It is amazing the amount of growth our children make.

The advice I’d give parents is that if you suspect that your child is having difficulties, or may not be developing quite like other kids his or her age, talk to your doctor and ask to have your child tested, by a specialist if necessary.  Don’t be afraid that the doctor will think you’re over-reacting.  If your child is fine, then you’ll rule out problems and it will calm your worries.  But if he needs help, you’ll be able to get it as soon as possible.  And if a relative, friend, or even a stranger off the street suggests that your child may have difficulties, don’t get mad at them.  The advice is kindly meant – they are trying to help your child.  Give their advice an honest evaluation before you dismiss it.  If it hadn’t been for my mother-in-law and a friend of mine, it would have been years before we discovered my son’s autism.  We would have lost all that time for early intervention. >>

Lorna: We often hear how siblings of children with special needs feel left out and feel their parents don’t spend enough time with them as compared to their brother or sister with different needs. What advice to you have for parents on making sure all their children feel valued and loved?teamwork-hands-heart-shape-logo-together-love-design-33931282 - Just because a child doesn’t have special needs, doesn’t mean they can raise themselves and that they don’t need time with their parents.

<<Cassie Zupke: That’s a tough one.  As parents, we only have so much time and energy.  It is physically impossible for us to always meet everyone’s needs, but it’s so important that we nurture all our children.  Just because a child doesn’t have special needs, doesn’t mean they can raise themselves and that they don’t need time with their parents.

It worked better for me after I changed the way I prioritized my efforts.  Everyone’s health and safety came first, that was non-negotiable, but after that, I “rotated” my focus from one child to another.  Everyone got some of my time to help them on their homework and chores, everyone got some alone time with mom and dad, everyone got some of my energy to help them with their personal growth.  They didn’t always get equal time – if someone was really struggling, we might focus on them a lot for a while.  But I tried to make sure that every day, each person in the family (my husband included) got at least some time that was all about them and that they got my undivided attention.

Did everyone always get enough of my attention?  No, definitely not.  But they all knew they were important, loved, and that I would help them the best I could.  They also learned a lot about working independently, dealing with adversity, and that life is not always perfect.  That includes my son with autism.  He had to learn that he is not the center of the universe and that sometimes life is about other people and not him.  That wasn’t always easy for him.

The other priority shift I had to make was to concentrate on the things that were most important in my family’s lives.  Sometimes we had Cheerios for dinner and I skimped out on housework, because my focus was on getting all of my kids to do all of their homework.  I was more concerned about them developing a sense of self-responsibility, a work ethic, and keeping up academically, than I was with maintaining a Martha Stewart lifestyle.  A steady diet of breakfast cereal and living in a filthy house isn’t a healthy way to raise kids, but dust bunnies never killed anyone. >>

We Said, They Said: 50 Things Parents and Teachers of Students with Autism Want Each Other to Know by Cassie Zupke Lorna: I know your book was sorely needed and I highly recommend it. Why did you feel there was a need for a book like We Said, They Said: 50 Things Parents and Teachers of Students with Autism Want Each Other to Know? In your book I read that parents must be realistic and must understand that schools try to teach the whole child not just academics. A student has to be prepared for life after high school. Please elaborate.

<<Cassie Zupke: Through my work with Open Doors Now, I provide education and support for parents and educators, and I talk to a lot of people.  Sometimes I’d wind up hearing both sides of the same conflict.  A parent would tell me about the trouble their child was having in school, and a few days later, a teacher would ask me how they could help a student who had the same difficulties.  I’d figure out they were talking about the same kid.  The parent and teacher would both be intelligent, caring, compassionate, and dedicated to helping the child, but they absolutely could not agree on the best way to do it.  That really puzzled me.  They both obviously had the child’s best interest at heart, but they would be locked in this huge conflict and there would be tears, yelling and lawsuits.  In the meantime, the child wouldn’t be getting the help he or she needed.  And I’d see this same scenario repeated again and again.

When I looked more closely at these conflicts I found that most of them were because parents and teachers didn’t understand why each other wanted what they did, and that better communication between the two almost always resolved the problem.

For instance, a very common dispute these days is when parents want their child fully included in a general education (“regular”) classroom, while the child’s educators are pushing for the child to attend a special education class.  The school says that the child won’t succeed in the general education classroom.  The parents then ask for an aide to help the child succeed, and the school denies the request.  Then there’s typically some polite arguing, then often some less polite arguing, then lawyers are brought in, and soon it’s a mess.  The educators often think that the parents are grieving and refusing to accept their child’s disabilities, and are therefore preventing the school from helping him or her.  The parents generally are of the opinion that the teachers and administrators don’t care about their child, that they don’t want to spend the money that’s needed to help their child, and that their child will suffer the rest of his life unless the parents can force the school to give him the help he needs.  But almost always, those assumptions are wrong.

Yes, parents do grieve about their child’s difficulties, but it’s not the overlying emotion that drives us.  Fear is.  We’re terrified because we know that one day our child will be out in the world without us.  We’re doing everything we can to help him develop the skills he’ll need to survive.  Unfortunately we’re hampered by not having a list of what those skills are and a road-map on how to achieve them.  What we do have is the idea that if our child can succeed in a “regular” classroom, (where success means getting good grades and having friends), then that must mean that they’re developing normally and will do okay later in life.  An aide can help their child get good grades and can help him navigate the social world.

Teachers also want the student to succeed academically and socially, but that’s not their only focus.  Schools also work hard to develop their students’ life skills.  They want them to be able to manage their assignments, work independently, ask for help when they need it, problem solve, develop self-responsibility, get along with their peers, and have the other “soft skills” adults need to hold a job, go to college, and get along in life.  While an aide can help develop a student’s life skills, there comes a point when they’re a hindrance.  You don’t learn how to work independently if someone is always there to prompt and direct you.  If you never experience failure as a child, as an adult you won’t know how to overcome it.  If you’re always shadowed by an adult, you won’t get the opportunity to learn how to be “one of the guys”, because classmates aren’t going to talk to you the same way they do other kids.  Students need to be taught at the level they’re ready to learn, and sometimes special education classes are the best place to build those foundation skills.

Unfortunately, most parents don’t know that some of the decisions the school makes are because they’re trying to help the child learn life skills.  Parents are aware that life skills are important and are working on helping their child learn them, too.  But since they don’t have the benefit of being able to directly observe how the student and aide work together at school on a daily basis, they don’t always see when having an aide is promoting dependence and isolation, rather than competency and social inclusion.  Instead, they see higher grades and that their child isn’t complaining about his classmates.  The school’s insistence to remove the aide is seen as a sign that the educators don’t want to help their child. >>

Interview Cassie Zupke Author of We Said, They Said - Advice on Nurturing Kids with Special NeedsLorna: You help train hundreds of K-12 teachers and administrators about autism and how to include children with autism in general education classes. Please give us examples on a few things that should happen in an inclusive classroom to make it work for all involved. Can you narrow down a few important things parents want to say to teachers of an inclusive classroom?

<<Cassie Zupke: The number one bit of advice I have for both parents and teachers is: when faced with a problem, figure out why the child did what he or she did.  That’s true for all students (with or without special needs), but it’s particularly important for children with autism, as their thought processes run a little differently than what we’re used to.  While non-autistic people can often correctly identify why a non-autistic acted in a particular way, we’ve got a really bad track record at figuring out the motives of people with autism.  Because autistic people have a hard time reading social cues, they’ve often developed a radically different understanding of the social world than the one we have.  They also have sensory difficulties that we don’t; different tolerance levels for stress, anger and other emotions; different passions, hatreds and fears; really high levels of ability in some areas coupled with very low levels in other areas; and often their needs for social interaction are not the same as ours.  All those differences are invisible to non-autistics, just as our differences are invisible to people with autism.  It’s really easy for people in both camps to misunderstand why someone did something, and assume that it’s because they’re lazy, defiant, mean, or dumb.

For example, when my son was six years old, he kicked his teacher.  While she was very understanding about it, I was really unhappy with him and he got in a lot of trouble.  We assumed he had kicked her because he didn’t want to do what she told him to.  I didn’t want him to grow up to be a violent adult who argued with authority figures, so I lectured him on the proper way to interact with his teacher, told him it wasn’t nice to hurt other people, and he had to do some extra work as punishment.

It wasn’t until a couple of weeks later when we were watching the movie “Snow White” that I happened to figure out actually why he’d kicked her.  We had seen the movie a few days before the incident at school.  In the movie, Grumpy doesn’t like that Snow White is bossing him around, so he crosses his arms across his chest and says, “Humph!  Women!”  So the next time I told my boy to do something he didn’t want to, he copied Grumpy and said the same thing.  “Humph!  Women!”  That didn’t fly well with me.  “You are not allowed to say that,” I said emphatically.  “Go do what I told you to do.”  I had meant that he wasn’t allowed to be disrespectful and defiant, but he had thought I meant that he wasn’t allowed to say the word “woman” – that it was a bad word.  A few days later, his teacher used the word several times, and in an attempt to stop her, he kicked her.

So, because I didn’t understand why my son kicked his teacher, my efforts to correct his behavior were completely off target.  How to be polite and respectful is a good lesson, but the one he needed to learn then was what to do when people say things you don’t like or that are against the rules.

Do your research.  Learn all you can about the special needs your child has and how they affect him or her in particular.  This is where strong communication between parents and teachers is essential.  Parents have a lot of knowledge about their child that teachers need if they’re going to help a student succeed in school.  Teachers know how the child acts when the parent isn’t there.  The trick is to get home and school to talk to each other without either party feeling like they’re being blamed for the child’s difficulties or being ignored. >>

Lorna: Tell us more about your presentations. How far from your home base do you travel? What topics are you asked to speak about? When you speak to other parents of children with special needs what worries them the most?

<<Cassie Zupke:  I talk a lot about how Asperger’s and mild autism affects people, about parenting kids with special needs, and about helping parents and teachers work together better.  I also recently put together a presentation about the difficulties adults with autism face, how to help our young adults transition into the adult world, and the skills we need to teach our children (and young adults) so they can succeed in the adult world.  I put a lot of research hours into it and I think it covers a vital topic.

I love to do presentations.  It’s so rewarding to give people information that helps them and the people they care about.  Raising children with special needs is very isolating.  It’s quite common for families to not know anyone else who is going through the same things they are.  It’s hard to believe you’re doing a good job and to see your child’s growth if you’re always comparing your family to “typical” families.

I particularly enjoy running our youth programs.  It’s great to see kids who believe they must be weird because they’ve never met someone similar to themselves and who struggle to make friends, find a whole room full of kids who like them and share their interests.  I love teaching mini-social skills classes where I can help kids learn something that will make their life easier.  Recently our junior high group used problem solving techniques to role-play a scenario involving a fire-breathing dragon who wanted to eat their parents and siblings.  It was great – a little gory, but a lot of fun.  I’d be delighted to tell anyone who’s interested in starting a similar group what I’ve learned about building a successful program.

As far as giving presentations goes, I love to give them but I often have limited availability.  Anyone who’s interested in having me speak, please do contact me and we’ll see what we can arrange.  You can email me at cassie@cassiezupke.com.  I also have a blog at www.cassiezupke.com and a facebook page at www.facebook.com/cassiezupkesautismnotebook.  Our Open Doors Now website is www.opendoorsnow.org.

As a parting word of advice, I’d like to tell parents and teachers to cut themselves some slack.  You don’t have to “fix” your child today.  (And you can’t anyway.)  Pick one or two skills to work on, and don’t stress about the rest.  Your child is going to do a lot of growing in the next few years.  Be sure to make time for fun and to cherish him or her, too.  This is their only childhood and your only opportunity to be their parent or teacher.  Enjoy them.>>

Lorna: Thank you so much for a wonderful book and for making the time for this interview with Special Needs Book Review.

four-puzzle-pieces- Interview Cassie Zupke Author of We Said, They Said - Advice on Nurturing Kids with Special NeedsFollow Cassie Zupke: 

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This post was written by Lorna
Lorna d’Entremont: Co-owner of SentioLife Solutions, Ltd. the company behind KidCompanions Chewelry (2007) and SentioCHEWS (2013), mother of three, grandma of 5 and wife. She is a retired teacher and special needs advocate. Throughout she has taught all levels from grade 2 to grade 9. Lorna loved teaching and enjoyed seeing the students progress in the school system. During her 30 year career she took a few years off to raise her three children.
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