One Teacher Changes Everything

If you talk to any autism mom and you ask her, “So your child is in special education?” She will smile and say yes, but that smile is loaded—I guarantee it. It’s not as simple as “special education” when it comes to autism and any mom who’s been through the special education obstacle course knows how incredibly frustrating it can be. But explaining the complexities of dealing with special education is enough to give anyone a headache, so we smile and say, “Yes.”

Most school districts offer special education preschool beginning at age three. Once all of the evaluations and interviews, and meetings are completed, your child is assigned to a school. Parents do not get to choose which school their children attend. Numbers makes that decision. How much space is available at which school and how far away that school is from the child’s home determine where your sweet baby will begin their education. The numbers will select which teacher will change and shape your child. It’s a big gamble for a parent who is used to being the only person in charge of their child’s needs.

Throughout this child’s education, they will be moved from school to school each year, rarely spending more than one year at a school. Each year, you get to know a new team of people who are going to be working with your children, as well as yourself. Making sure that special needs kids are succeeding in their education is a team effort. Communication is vital, and working well with your child’s teacher is essential. But what happens when one member of the team isn’t doing their part? Chaos. Chaos happens.

I have worked with ten different special education teachers since my son started preschool. Some have been good teachers but lacked in communication, leading to some frustration on both sides. Some have been really amazing at everything; they’re the teachers you wish you could keep forever. They know how to get through to your child, and they help you in any way they can to bring out the best your child has to offer, not only at school, but at home as well. Those are the teachers who have really made me feel like I’m not completely failing at this whole autism thing.

Then there have been teachers who, for one reason or other, fail to connect, and rather than being a team working together, I’m struggling to understand why my child hates going to school and is deeply unhappy. Behavior issues begin (the chaos I mentioned ensues), and everyone involved becomes frustrated. It makes for a long and difficult year. This school year has been one of those years. It makes me question everything I do as a parent. It makes me feel like I’m failing. All parents question whether they’re succeeding with their children, but autism parents are especially hard on themselves.

We look to our children’s educators as a voice of experience and knowledge. We look to them as a resource to turn to when we just aren’t sure what to do. There is no “How to” manual when it comes to autism. We as parents don’t know exactly how to handle every situation, or it wouldn’t be challenging. So, we need teachers on our side, working with us. Having a teacher who criticizes and undermines you (as I have this year) is not only frustrating, it can be demoralizing. It’s impossible to feel successful as a parent when you feel like you’re at war—and you’re losing!

It seems the only recourse in this situation is to call the district, and beg and plead for your child to be moved. Of course, they promise nothing, you’re completely at the mercy of the district, and you pray till you’re blue that next year you get a better teacher. Unless you have the financial resources to put your child into a specialized private school, (a majority don’t have those resources) you and your child are at the mercy of the numbers again.

I felt the need to write about this because this year has been such an enormous struggle, that it has sapped all of my energy. I haven’t posted anything to the blog since moving to this new school because I have been so busy trying to keep my head above water. I know I can’t be the only mom out there who has had to go through this. So, I wrote it for me, to let off a little bit of steam, and to let other parents know, they’re not alone. I’m sure this won’t be our last difficult year, and I don’t even want to think about middle school and high school yet. It scares the tar out of me.

I have a lot of respect for teachers and educators. They sacrifice a lot to give back to our children. But one teacher can make such a huge difference in our life for better or worse. One teacher changes everything.

After the Meltdown

What do you do when the meltdown is over?

Do you cry from physical and emotional exhaustion? I do.

Do you take a minute to hate the autism? I do.

Do you worry that you’re doing something wrong, and it’s causing your child’s meltdowns? I do.

Do you wonder at how your child can go from screaming and doing everything he can to hurt you, to acting as though nothing happened? I do.

Do you doubt you have the inner strength it takes to do this again? I do.

Do you pray for your child and yourself? I do.

Do you keep on going despite your physical, spiritual, and emotional weariness? I do.

Do you need a good hug? I do.

Overcoming Autism Isolation

Children with autism have social impairments that cause a natural isolation from their peers, and this often causes us as parents to be isolated as well. I call it autism isolation. There are several behaviors that isolate autistic children from their peers. For one thing, autistic children have difficulty understanding nonverbal cues, like facial expressions, which people use to relate emotions. So, they will often react inappropriately in certain social situations. For example, my son laughs when someone is crying. He doesn’t realize that the person is sad, he just thinks they’re “acting funny”. We have to teach, or program if you will, autistic children to pick up on these cues that typical children naturally know. If I put myself in a child’s shoes, and I have a friend who laughs every time I’m sad, I wouldn’t really want to stick around. And that's how autism isolation begins.  

There are a lot of other things that separate autistic children from typical children. They’re different. They don't look different; they act different. They’re often described as being quirky, peculiar, and a little off. They don’t fit into that “normal” mold. They often do things that might not make sense to someone else. For example, my son likes to rub his head on people's chests (not a socially appropriate behavior). He gets away with it now, because he's young, but that's not going to fly when he's a grown man. Why does he do this? His brain has a hard time processing sensory experiences, like touch, sound, taste, smell, and sight. This is called Sensory Processing Disorder. Many children with autism have sensory processing issues. To some children, a touch can feel like pain, so they avoid it, but to others, they don't feel enough sensory experience, so their brain tells their body to find it. It's called Sensory Seeking. I have one son who is sensory seeking, and one who is sensory avoiding. These sensory processing issues can lead autistic children to do things like hand flapping, spinning in circles, and many other "odd" behaviors. Even though he has a legitimate excuse, my son's bizarre sensory seeking behavior definitely sets him apart from other children. And it causes me to have to make some awkward apologies to strangers.  

Many people on the autism spectrum have very limited interests. My child for example is obsessed with and can only talk about Transformers, or Lego products. Talking to him about his day at school can be like trying to extract information from a Russian spy. He doesn't like school, therefore he sees no need to talk about it and there's no way to make him. It can make it hard for kids with other interests to connect with him unless they are as obsessed with these things as he is.

To illustrate my point, I’ve drawn two circles. In one circle, you have a neurotypical child, or basically, your average kid. In the other circle, you have an autistic child. There is not always a complete separation of autistic behavior and typical behavior, so there is an overlap depending on where your child falls on the autism spectrum. The higher functioning your child is, the more the circles overlap, but the more severe your child’s behaviors are, the further they move apart. Your level of isolation as a parent will often match the level of the severity of your child’s autism, like these circles. If your child is high functioning, they will socialize more and be more accepted by neurotypical peers, which allows you to socialize more yourself. After all, you yourself are neurotypical, and crave that social interaction, just like everyone else.  

 

As a parent, especially a stay at home parent, you really have to make an effort to socialize your children and help them (and yourself) make friends. This is something that becomes a lot harder to do when your child has extreme behaviors. It’s hard to have a pleasant conversation with another mother while you’re constantly having to stop your child from stripping their clothes off or licking everything and everyone in sight. Not only is it difficult to help your child make friends, but you as a mom can find it hard to connect with mom’s who don’t deal with the same challenges you do. What do moms do when they get together? In my experience, they usually “talk shop” about raising kids. When your kids are in the autism circle, it’s difficult to relate because you have a completely different set of rules for parenting. So you sit and listen, and sometimes laugh to yourself and think, “Not my kid.”

It’s not that you don’t agree with the other mom’s, you’re just on a completely different plane than they are. And perhaps you’re even a little jealous. I know I am sometimes.

In an earlier post, I talked about how my son’s extreme behavior made my husband and I feel like captives in our own home, because every time we tried to go out somewhere (anywhere), our son would have a meltdown. It became so difficult, that we basically gave up and just stayed home. We isolated ourselves because we were tired of dealing with the meltdowns, but honestly, that’s not really what was best for our son, or for us. If you want your child to learn how to better cope with social situations, you’re going to have to let them practice, and you have to give them the tools they need to cope as well. It’s not easy, and it’s often a trial and error process, but it will be worth it in the end. Our family is STILL working on this.

There are things you as a parent can do to help break up the isolation that naturally comes from having a child on the spectrum.

1.     Join a support group. Common interests bring people together. Joining (or creating one if you have to) a support group for Moms with kids on the autism spectrum will help you feel less alone in the struggles, and even the joys of autism. Being able to “talk shop” and resources with other autism moms is invaluable.

2.     Set up playdates. I could do an entire post on the challenges I have with playdates, but despite how hard and awkward they can be, they’re good social practice for your child. To lessen the stress of playdates, you can start with family, if they live nearby. Family members usually understand your challenges and will happily adjust to meet your needs. If they don’t understand your challenges, EDUCATE THEM! This goes for playdates with non-family members too. If other people understand WHY you need them to come to your house, or to a specific park, or what strange behaviors they might expect to see, the more accepting they will be.

3.     Hang out with other adults WITHOUT the children. Socializing isn’t just important for your kids, it’s important for you too. The whole reason we socialize our children is so they can grow up and be well-adjusted “social” adults. Get a babysitter and invite some friends to go out for dinner. Enjoy socializing with other adults, and leave the autism at home for a few hours (don’t talk about it and try not to even think about it). This will feel strange at first, but trust me, it’s completely normal.

4.     Go at your own pace. Just because it’s important for your child to practice being social, does not mean you must be going somewhere or playing with someone every day. Some people are “social butterflies” who have a large circle of friends and like to stay busy, but others prefer to have just a few good friends. I fall into the few good friends category, and I have since before having children. So don’t push yourself (and your children) so far out of your comfort zone that you hate life. Do what works best for your family.

If you have a friend or family member with a child or children on the autism spectrum, there are also things you can do to help prevent autism isolation.

1. Take initiative. Be the one to suggest a playdate, or arrange a double date. Autism parents don't often put these things at the top of our priority list, but when someone else pushes us to do it, we're grateful for it. Often we don't want to impose on others or put them in an awkward situation, so we overcompensate by never making that first invitation.
2. Educate yourself. If you don't understand something about autism, ask. Chances are the autism mom will be more than happy to educate you. The better understanding you have, the more opportunity there is to create new friendships or enrich existing relationships. Don't be afraid of autism. Despite the odd behaviors, there is a lot of joy that comes from getting to know these amazing kids/people (this applies to befriending an adult with autism as well).
3.  Be flexible. As an autism mom, I automatically run through every worst case scenario in my mind for every social situation we encounter. I can usually predict what things are going to set my kids off, and I try to do what I can to avoid those things so we can all have a good experience. So, if I ask you to avoid doing something in particular, or even talking about certain subjects, try to be accommodating. (ie...The words Wal-mart, Target, and Toys R Us are prohibited in our house because it has the effect of saying, "let's go for a walk" to a dog. It gets everyone revved up.)
4. Be patient. This pretty much goes without saying. If you're friends with an autism mom, you're going to see some meltdowns. You will probably feel a bit awkward, because you'll want to help, but not know what you can do. But don't worry, as you become more familiar with the child, you will find ways you can help, and believe me, mom appreciates all the help she can get.

As much as everyone tries to say, “There’s no such thing as normal.” The truth is that a majority of society lives by certain social rules, and people who don’t follow those rules are outside the circle. Families affected by autism want to be a part of that normal circle. We just have to work harder to find that middle ground between the two circles.

 

Let it Go

I love a lot of things about North Carolina. The climate, the greenery, the people, and the slower pace of life are just a few of the things I love about it. The problem with North Carolina (for our family) is that it doesn't provide the kinds of support that our family needs, and our families are noticeably absent. For these reasons, we've decided to return to the Arizona desert (ugh). I have always hated the desert, but I'm setting my wants aside for my kids.

Autism is at the forefront of my mind ALL the time. It influences almost every decision I make, from what to make for dinner to where we should live. I have to be conscious of my children's needs in everything we do. Most families don't have to think twice about going out for a fun family dinner, or a picnic at the park, or driving by Wal-mart. They don't have to worry about their child melting down over some mysterious thing and causing damage to people or property. But we do. I love my boys more than my own life, which is why I'm willing to make whatever sacrifices I have to for their benefit, but I can't help but imagine sometimes how different our lives would be without the autism.

The world is becoming more aware of autism, because autism is filling the world. 1 in 68 children in the U.S. is on the autism spectrum! Almost everywhere I go, if I say, "My children are autistic." I will be answered with, "Oh, my so-and-so's son is autistic." It's everywhere. Yet, I have to move my family across the country to access better benefits for my autistic children. My husband has to find a different job and I will have to put on my helmet and shoulder pads and go toe to toe with a lot of bureaucratic nonsense just to get my children what they need.

Each of the last four years we have spent in North Carolina has gotten increasingly more difficult, with the worst of the worst in the past 6 months. We finally said, "Something's got to change, and since we can't change the autism, we'll have to change our circumstances and ourselves." We can't be selfish anymore. I wish we could stay in NC, but things have gotten progressively worse for us the harder we have tried to hang on to what we want. We are going to have to set aside our dreams and make new ones. When Braden was first diagnosed, we had to let go of our dreams for him and make new ones (like talking, and making a friend someday). We just didn't realize that we would have to let go of our dreams for ourselves too, but we are coming to find that out the hard way.

Gloria Steinem said, "Without leaps of the imagination, or dreaming, we lose the excitement of possibilities. Dreaming, after all, is a form of planning."

Everyone has dreams of what their life will be like and what they hope to accomplish. I would love to live in the countryside, build a homestead, and be paid to write. I used to dream about having a big family and lots of grandchildren, but those dreams changed, along with everything else in my life, when I found out my child had autism. You would think that I would give up on dreaming, but it's human nature to dream and imagine our world is better than it is. Without that, we would wither miserably and no progress would be made. So, I'm not going to give up on dreaming; I'm just going to have to find a new dream for now. Maybe someday we can pick up these dreams, dust them off, and try again, but for now, we are going to have to let it go.

The Ugly Side of Autism

I'm haphazardly parked across three spaces in an apartment complex. The driver's side door is ajar, as well as the door behind it, along with the back hatch of my highlander propped open. There is a child's screaming ringing through the morning air as residents out walking their dogs before they head off to work steal glances in our direction. Someone walking behind the car would see a short, sweaty, crying, red-faced woman struggling with a boy who almost matches her in height, and who is trying desperately to hit, bite, scratch, and kick every inch of her.

My face is stinging and my eyes hurt from being hit in the face so many times. I stop to think why boxers do what they do. If you've ever been slapped hard, you know it hurts, and I'm no wimp when it comes to pain, but yeah, I'm in pain. I'm tired, because I've been struggling for about forty-minutes; my arms are burning, and I won't know how many bruises I'll have on my legs until later. I'm just trying to hold out until my husband can come and help me. I only have one mission right now. Keep Jackson safe.

The crying coming from the car is my youngest son, who has been hit and kicked in the face by his older brother before I could intervene. I can't comfort him and tell him it will be okay, because I have to restrain his brother behind the car to keep him from hurting him again.

A woman across the street comes out to her balcony (probably because of the noise). She stands watching us for some time, then yells out, "Do you need help?"

I have no idea how to answer that question. It's pretty obvious that I need help, but there just isn't much anyone else can do for me at the moment. Through my tears, I try to yell, "I'm fine." But it rings so false in my ears and feels so ridiculous to say, when I'm in the process of being pummeled; it only makes me cry more. The situation seems completely hopeless and it crushes more than my face, it breaks down my spirit. I can't take the things he says to me personally, but hearing your own child tell you he wants you out of his life forever…always hurts.

My husband finally shows up after having had to walk out of a meeting at work. He takes Braden home in his car and I can finally check on Jackson and tell him how sorry I am that I couldn't protect him. His face is a little red, but he seems okay other than being tired from crying and probably extremely frightened. I know I can't take him home, so I try to get myself together, close all the doors to the car, and take him to school. While driving Jackson to school, I keep mumbling, "I just need to make it through today. Tomorrow will be better." I'm trying desperately to convince myself. We're an hour late. His teacher takes one look at me when she comes to the office to get Jackson and says, "Are you alright?"

No. Today I'm not. Every day with a child who has autism is different. We have good days and then we have days like this. Days when we feel completely defeated physically, emotionally, mentally, and spiritually. These days when we're tired of fighting, tired of trying to be positive and be strong. We want to throw our arms up and say, "I'm done! I give up! I'm not strong enough to do this!" But we don't do that, because we know we will wake up tomorrow and our children will still have autism; they will still be our children, and we will still love them. So, we go to bed that night, pray that tomorrow will be better, and get up and do it all again—whether it gets better or not.

Some people might wonder why I would tell this story, when it's clearly not a pretty one. Why should I hide the ugly side of autism?  We tend to try and hide the ugly side of everything as a society. We want perfection and the scene I've just described was anything but perfect. We airbrush blemishes from models to create the appearance of perfection, when in truth, perfection doesn't exist. There is an ugly side to everything. The backside of the most beautiful paintings in the world are just plain canvas. The beauty is in what we do with the ugliness. I'm showing you the ugly side of autism (the backside of the canvas) so you can walk away with a better understanding of every aspect of this disorder.   


When I started this blog, I said, it wouldn't be all sunshine and roses because life with two autistic children isn't all sunshine and roses. The truth is there are ugly days, a lot of them. This blog is about what it really takes to be the parent of two autistic children. It takes the physical strength and endurance of a boxer (you have to take a beating sometimes). It takes emotional resolve and the ability to accept your life as it is. You have to extend yourself mentally, learning how to deal with behaviors and doing research to try to come up with solutions to modify those behaviors. It takes spiritual strength like I never believed possible. I've been tested to my limits and there have been times I felt I would break. But I made it through this bad day, and many, many others, and I go to bed every night and pray for a better day tomorrow.

Back to School: The Most Wonderful Time of the Year!

I know there are some parents out there who are sad to see their kids go back to school at the end of the summer—I'm not one of them. When my kids are home together, they have to be constantly supervised, and it is extremely tiring. And when I say constantly, I'm not exaggerating. Even if they aren't attacking one another, one or both of them is usually doing something that will either get them hurt, or destroy our house. By the time "back to school" rolls around, I'm dancing through the aisles at Target as I shop for school supplies singing that Christmas song "It's the most wonderful time of the year". (very much like this) I count down the days until we can get back into a regular routine, because summer and track out are anything but routine. Kids with autism thrive on routine and predictability, so school (as long as they are in a good class) can be one of the best things for them.

This year, I will have BOTH of my boys in school all day. I'm both scared and excited. I'm scared because Jackson is so little, I just can't picture my baby going to school yet, but I'm excited for him to begin learning and hopefully getting some of the help he badly needs. He still doesn't speak, but he is picking up on some sign language, so I have hope that we will be able to find SOME way to communicate with him, even if he is non-verbal.

What will I do with myself between the hours of 9:00 - 2:30 you might wonder? I know exactly what I want to do—WRITE! I can finally focus on my writing career and have time to write (not in the middle of the night, like I do now). I am working furiously on a new book, and I have ten other writing projects in line after that, not to mention this blog. I know I don't have a cult of followers who read my blog, but I keep it because it's a record for me to look back on. Who knows, maybe one day I will write a book about Autism (the thought has definitely crossed my mind).

Having the boys in school will also give me time to focus on my health. Constant stress eventually leads the mind and body to break down. I've definitely hit that point. I have quite a few stress related or stress induced health issues that I struggle with every day. (Learn more about how stress can cause burn-out here) I'm not going to spill all of my medical history to the world, but I would like to reach out to other moms out there who deal with the stress of having a child with autism and emphasize the importance of STRESS RELIEF!! Do whatever it takes to give yourself a break once in a while. The money you pay to a baby-sitter, or mother's helper, pales in comparison to the money you spend going to ten different doctors, loads of prescription drugs (with side effects), all trying to undo the damage of STRESS.

Hang in there (I know that sound like a cat poster…ha ha ha…we love the Lego Movie at our house, so if you don't get that joke, you probably don't have boys). Don't break under the pressure of autism. It's a lifelong challenge and it can be truly daunting, but I know you love your child, like I love mine. As a mother, it's second nature to give, give, give, but it's really important to take some time for yourself (and your husband too if you have one, if you don't, there's even MORE reason for you to get a break!)

Am I a horrible mother because I'm not crying when I drop my kids off at school? No. No I'm not.


 

Autism and Religion

I am a religious person. I haven't always been this way, though. I went through my own process of discovery before choosing to become a member of The Church of Jesus Christ of Latter Day Saints. Being a member of this church has blessed my life in more ways than I could list. I always dreamed of sharing that happiness with my children. I wanted to see my sons go on missions, and then marry in the temple. I had hoped to have a daughter to pass on my heirlooms to, and see my children have children of their own. But Heavenly Father had a different plan in mind for me. I was always a bit of a peculiar and imaginative child; my mother always said I danced to the beat of my own drum. Perhaps I wasn't meant to live an ordinary life, and so far, it has been the farthest thing from what I had dreamed, and most certainly not what I would call ordinary.    

Autism has so many facets, that it is impossible for me to encompass every issue regarding autism and religion, but I would like to write about the few aspects that affect our family personally. Our son, Braden, sees things in black and white. He is very literal and has difficulty grasping abstract concepts that can't be seen or shown to him. He does not understand what the Holy Ghost is (or what a ghost is period), nor does he really understand who Jesus and Heavenly Father are, and why Jesus died for us. If these things could be explained with Lego sets and instructions (Braden LOVES "reading" Lego instructions, no words, just pictures), we'd be good, but they really can't, so he doesn't understand why we want him to put on uncomfortable clothes and sit quietly for three hours every week, when he can't even sit still through a meal.

Jackson is a sweet, quiet, and mostly content little guy, but he gets very anxious when surrounded by a lot of people. People he doesn't know are unpredictable to him, especially other children. He really does not know what to make of other kids, so he will hide or ignore them completely. He does not speak, and cannot ask for help or answer questions. His developmental age is closer to 18 months-old rather than three, so his grasp on religious concepts, really isn't known, or developed yet.

As it stands now, neither of our children understands our core belief system. The very system which affects every decision we make. This is pretty disheartening, but Jeremy and I still have our faith, though. We still believe in gospel of Jesus Christ. But attending church on a weekly basis is nearly impossible for us. Just as it's difficult to take our children to birthday parties, Christmas gatherings, trick-or-treating, to the doctor, to the mall, or to the store...etc. Nothing is easy when you have two children on the spectrum, and even if so-and-so is miraculously able to get their autistic children to attend church, they aren't us. All children with autism are different and so are their parents. Maybe we're doing it wrong, but we are doing our best.

So, we've become captives in our own home because going anywhere only causes chaos and frustration for everyone. Every once in a while, we try to get out of the house, and do something "fun" just to see how it goes, but it usually ends up with Jeremy dragging a kicking screaming Braden out of a restaurant or store, and waiting in the car while I pay the bill or check out. Then we get to the car. If Braden hasn't calmed down, Jeremy ends up sitting in the back seat between Jackson's car seat and Braden, so Jackson doesn't become the victim of a flying limb. By the time we get home, we're rundown and ragged, and Jeremy's butt is numb from sitting on a seat that was not meant for a grown-up. So, we whisk the kids into the house before they can disturb the entire neighborhood, and we swear to ourselves we will never leave the house again.

We have a wonderful ward (area of members that attend church with us). They have been very supportive and have offered to help us in many ways, and without them and my faith, I would have had a nervous breakdown long ago. They pray for our family and care about what happens to us. That Christ-like attitude is part of what brought me into the church. I believe that Heavenly Father gives us challenges to overcome in life. (See my last post) And I hope and pray that someday, we will be able to attend church as a family, but until then, we will keep trying, and I pray for strength, patience, and friendships that will help get me through these times. Living far away from our families has definitely left a gaping hole in our life, and having good friends helps to bridge that gap. My life may not be what I planned it to be, but it's my life and I'm going to live it one day at a time.