Thanks Mariel and Jessica! For this opportunity to write about something close to my heart! I love your blog and am happy to be a part of it!
Hello! My name is Jenny. I live in North Carolina with my sweet husband, three crazy kids and 6 urban chickens. I love being a mom and I love writing, eating and being outside. Occasionally I blog at jennygranola.blogspot.com but most the time you can find me reading a good book with the kids, mixing up some crazy gluten free concoction in the kitchen or running long miles down Raleigh city streets.
Have you ever found yourself trying to get in some much needed retail therapy at your favorite shop when the trip was shattered by blood curdling screams from the next aisle over? Someone’s kid is having a fit in public again. You are probably simultaneously annoyed by, and embarrassed for, the mother who obviously doesn’t know how to take a child shopping. You’re probably also glad it isn’t you.
Four years ago, that mother was me. Every single time I took my three year old shopping, if the trip wasn’t completed in a matter of 15 minutes or so he would eventually be the kid screaming, throwing himself at the walls and basically acting as a major form of birth control for those on the fence. But this didn’t just happen at the store. This happened at home, at the park, at church, everywhere. There didn’t seem to be much of a pattern and there was never any telling what would set him off. Don’t even get me started on birthday parties. We still can’t go to them without holding our breath!
So, what was the problem? I had no idea. I just figured I was a terrible mother who didn’t have a clue what to do with a difficult/quirky child. It wasn’t until a rare visit from my mother that the bells started to go off in my head. Coming in with a fresh perspective, and a lot of love, she was able to see things that I had overlooked. This led me to ask a lot of questions and I eventually had a very dear friend point me in the direction of autism.
Here’s the best way I know to describe autism today from a mother’s point of view:
It’s when a child is born with a nervous system and brain that are just wired differently than “normal” or typically developing children. The latest research indicates that the major parts of their brains may not be connected the same way ours are so, the different parts can’t talk to each other or work together as well. Also, their brain has limited use of the part that handles facial recognition and personal interaction. They are not equipped to be social on pretty much any level. Compare this to not having access to the part of your brain that processes sound. You would be deaf. It’s much the same; social deafness and blindness. Because of this many of them just don’t see or hear the people around them. Some will see and copy what they see, but they don’t know how to interpret that. They can’t tell the difference between a happy face or a sad face. Some are so deficient in this area that they don’t even learn to speak because they can’t relate to the parents who most children copy effortlessly.
This lack of social understanding and ability to communicate turns into a whole lot of other problems ranging from cute or weird to down right unbearable. We all expect a baby to cry when it needs something, but a seven year old? No way. Grow up and use your words kid! Well, what if that seven year old’s brain can’t pull up the right words? What if the adults dealing with him don’t understand what is happening and they push him to the point where he has NO words? Parents and children with autism have to learn how to work together and it’s not generally in a way that is intuitive for either of them.
Children with autism have to be taught EVERYTHING. I’m not just talking potty training or how to walk. Some have to be specifically taught how to talk by speech therapists or given devices and taught to use those. We used rudimentary sign language out of desperation just to get our 2 year old to tell us when he was thirsty instead of screaming. He could talk and say a few words, but he couldn’t use those words to communicate. They also have to be taught all of the social rules that other kids just pick up by default. (It’s ok to hug and kiss your grandma, but Joey probably doesn’t want you to hug and kiss him in front of the soccer team.) They have to be taught that there are actually other people in the world with them whom they have to be aware of and treat kindly. For the longest time our son would pick up a toy, yank on it and then freak out because it wasn’t coming where he wanted it to go. He never saw the child on the other side of the toy holding on for dear life. We had to teach him as he got older that when he went to the playground he should walk up to a child and say, “Hello! My name is Evan, what’s your name? Would you like to play?” He still uses those exact words to this day with every child (and adult) he decides to tune into. Even the handy man, who doesn’t have a lot of time to play.. but oh! Those tools!
Sound exhausting? Well, it is. But it’s better than the alternative – a child imprisoned in their own mind and body with no idea of how to communicate with or understand the world around them.
And this brings us to the cool part about autism: they can be taught! And so can we! In fact, most of these kids have really high IQ’s and a higher percentage of their brain available to them for use. They can learn just about anything that is taught to them using the right methods. This is key. You have to know HOW to teach them so that they will learn.
They are typically not auditory learners. That means that they generally don’t hear you if you’re just talking to them. (Picture Charlie Brown’s teacher.. wa waaaaa wa wa wa wa!) They are much more interested and stimulated by visual learning. Many children use picture schedules to get them through their days. That’s a chart with different little pictures of the activities for the day, or sometimes even the hour. Oh! those schedules! They so love their schedules! These kids do not like to be surprised. They like to know what is coming and when and for how long and the more detail you can give them, visually, the happier they are. I was never so glad for my BA in Fine Art than when I realized my talent for stick drawing finally had a use! Last minute run to Costco? No problem! Draw some quick pictures of where we were going and what we were looking for, explain that a reward lay at the end, give it to him to hold and as long as there was no obscenely long lines, we were ok!
Most children with autism (the PC term for the moment is ASD – Autism Spectrum Disorder) also have what is called Sensory Integration Disorder or SID. However, this is a separate disorder and there are plenty of children who have SID but do not have ASD. The social factor is generally what determines an ASD diagnosis. Sensory Integration Disorder means that their little nervous systems don’t work the way ours do. Some are overly sensitive which means they can’t handle much input at all. Imagine if everything you heard was ten times louder than normal. What if every light you saw was one hundred times brighter? Imagine if every seam in your clothing was lined with fiberglass. Get the picture? It’s just how their brain interprets these things in our every day world. You’d be stark raving mad, right? It’s a wonder that these little kids hold it together as best they do. Imagine the music in the grocery store feels like a sledge hammer pounding your brain. It’s late in the day and mom is debating about whether to buy Tuna Helper or Hamburger Helper.. ya, I’d loose it.
Some children with ASD or SID are overly sensitive and don’t even like to be touched at all – it’s actually physically painful to them. Then there are the under sensitive kids. These are the ones who need more of everything to get a good feel for it. We had a doctor once describe it as the feeling you get when your leg falls asleep. You know you have a leg, but you can’t tell where it is in space unless you poke it really hard or stomp it up and down, then it starts to hurt when the feeling rushes back. This is the feeling that our son gets all over his whole body. Can you image not knowing where your head was in space? When that feeling would come over our son he would just run full speed into a wall head first. We thought he was self destructive, or worse, but he just wanted to make sure he still had a head, and because he had trouble communicating with words, he didn’t know how to ask us “Uh mom?Is my head still there?”
The list goes on on and on…Their mouths are also effected and many are extremely picky eaters. They can’t handle certain textures or flavors. Some like more, some like less. Our son leans towards crunchy food. He’d rather have carrots than pudding. They don’t like surprises in their diets either, so every day for lunch my son asks for a grilled cheese sandwich and every night he wants macaroni and cheese for dinner. The side dishes can vary – thank heaven!
Most kids with ASD find it extremely difficult to look other people in the eye. I don’t know why this is, it just is a fact. There are others, still who can’t seem to break eye contact and don’t know when it is appropriate or not.
Because of their crazy out of control nerves, many have trouble sleeping. Our son didn’t sleep through the night until he was over a year old and then only rarely until we found him a weighted blanket. This is a 13lb blanket full of plastic beebee’s that he sleeps under no matter what. Lots of fun to pack for a trip right? I see it as packing a few extra hours of sleep!
Many of these children also have chronic bowel issues and celiac’s disease – an allergy to a part of wheat called gluten. It is believed that when their bodies digest the gluten it turns into a chemical that effects their nervous systems and brains making their symptoms even worse. Recently we decided to give a gluten free diet a try. We’ve seen marked results in communication and his ability to concentrate and sit still during school. Others have seen improved results with different supplements or oils. Special diets and supplements can run you into huge grocery bills though and some months it’s a struggle.
Most everyone agrees that consistent therapy from professionals can help any range of children with ASD with any range of issues. But because each child (and adult) is so unique, sometimes finding the right therapists and therapies is a battle in and of itself. And if you are lucky enough to find a therapy that works for your child, good luck paying for it if it isn’t a free, government sponsored program through your school or covered by your insurance. Currently most major health insurance companies, including state insurance, don’t cover the cost of Occupational , physical or speech therapy for children with autism and those twice weekly (or more) appointments are incredibly expensive out of pocket. We’re talking $100 an hour and if your child is seeing three therapists twice a week, that’s $2400 per month. There are several states, North Carolina being one, where the local Autism advocacy groups are trying to change this through legislature. In the mean time, when we moved here and found out that we couldn’t get physical therapy for our son because he wasn’t “a danger to his classmates,” we ended up enrolling him in a local karate class. It’s a lot of fun at only a fraction of the cost of a private PT. But the biggest reason it works is because his Sensei is phenomenal.
ASD is measured on a very loose scale called a spectrum. Children and adults with little to no social interaction or potty training, those who don’t learn to speak or communicate in any way, and require assistance with day to day living are at one end and usually labeled as Severely Autistic. The other end of the spectrum is for children and adults who are just a bit behind in the curve. They show some of the symptoms, but not all. There are enough issues with their development socially, however, that they need help and they are diagnosed with Pervasive Developmental Delay/Not Otherwise Specified or PDD/NOS. In the middle is Aspergers Syndrome, High functioning Autism and then Moderately Autistic. Since Autism is such a hot topic these days the criteria for diagnosing is always changing and the diagnosis you get very much depends on the doctor or team in charge of your child.
So what does this all mean for you? Given the odds today, there is a very high chance that you know someone who has a child with autism if you don’t have one yourself. You may just be connecting some dots right now about your own child.
The hardest part for me was realizing that I needed outside help with my son. Once I got over the fact that I wasn’t the perfect mother with all the answers, I read the book The Out of Sync Child. Now, I hate self help books, but I highly recommend the whole series of books in this line. They explain in much more depth a lot of the things that I’ve described above. After seeing more clearly how closely Evan fit the criteria for an actual, diagnosable syndrome, we took the plunge and enrolled in an free early preschool program where they taught Evan and my husband and I how to communicate with each other and where our expectations should be. It was a family saving program and they have them in every state in the country.
If you are concerned about your child for any reason, not just autism, and they are under three years of age, you can contact a Birth23 or Early Intervention program near you. If they are over three you can get a referral from your pediatrician for a Developmental Pediatrician or you can contact your local public school for a free evaluation through your school district. These programs will help you no matter what your concerns are. Your child may just be late in speaking or walking or have emotional problems or you may even suspect autism. It doesn’t matter, they will help you. From one mother to another, if you have doubts, it’s better to be safe and cover all your bases than to let you and your child stumble along on your own. I was blown away by the number of people and clubs and books who were out there just waiting to help me and our family and Evan specifically. Why go it alone when there are so many resources available to make your life easier?
If you are an unrelated bystander watching all this go on at the store, school, church and on the news, here’s what I have to suggest for you: have compassion. Instead of automatically assuming that you’re looking at a spoiled child and a bad parent, admit that you don’t know what they are going through, what is causing it or whether they are getting the help they need. Offer a warm smile or a helping hand if at all appropriate. It may be just a spoiled child or a bad parent, but it may also be Evan and I having a really bad day.
If you have the opportunity to work with these children in a school or church setting, get to know the child, talk with the parents. Find out what makes them tick. Do they like a big hug before class? Do they need to sit in a chair that rocks? Do they need to have something in their hands to keep their body busy so their brain can focus? Think of that saying – “If you know one child with autism, that means you know ONE child with autism.” What works for one might not work for another. You have to see them as individuals and start fresh getting to know each one. Perspective is the key. To the very quick judging eye, our children seem like discipline problems when really, it’s a communication problem 90% of the time.
After all of this blather, you might wonder, what is my biggest complaint as the mother of a child with autism? You might be surprised. It’s not the long sleepless nights when you should be well past that stage. It wasn’t four years of potty training. It wasn’t being head butted in public or stared at by strangers or trying to weather yet another mystery tantrum of epic proportions. It wasn’t trying to figure out a gluten free diet or translating for him with yet another teacher. It’s actually when I tell people that Evan has autism and the first thing they say, with all of the authority of God and the President, is: “Well I don’t see anything wrong with him. He looks like a normal kid to me!”
First of all, there is a reason they call it The Invisible Disease. Second of all, you are NOT a developmental pediatrician. You are not TRAINED to see disabilities in children. And even if you are, chances are, you have not observed my child long enough to make a diagnosis. Thirdly, by saying that, you are not complimenting me on the “normalcy” of my child, you are throwing all my worries and fears and struggles of the past seven years out the window and making me feel like an overly freakish, paranoid mother of a kid who “just needs a spanking”. Instead, just say something along the lines of “Wow, that must have been hard for your family,” or “wow, he’s such a sweet little kid. You’ve done a good job with him.” It seems like a small difference, but from someone who has to watch for and regulate all the little details, it means a lot.
Now, I have to end on a positive note. I am blessed beyond anything I can tell you about. My son, with all of his quirks, is amazing. He’s so bright and wonderful. He is smarter than me by miles, he is caring and full of sympathy. He is curious about the world, loves all animals and is kind to them, he loves his sisters and wants to build “really big things” when he grows up. I have no doubt he will. The benefits of having a child with autism far outweigh the challenges. He helps me to see life through different eyes. He changed me and gave me the challenge of thinking beyond the norm in a really big way. He taught me appreciation for the tiny things in life that other people just take for granted. He’s helped me grow and learn and I am a better person for having had the privilege of being his mother.
If you ever run into us in a store, and he is having a bad moment, please remember that we are trying and that the world will be a better place for him having been in it. Even if it’s a louder place for just a little while.