“Yeah, but this is a group of people who understand heartache. Folks like that aren’t the type anymore to get overly upset or judgmental about things that don’t really matter. They know the difference too well.”
-My Dad (upon hearing me remark about the incredible degree of acceptance and good sense I’ve recently discovered about the special needs parenting community)
A little over a month ago, just prior to Christmas break, I went out to the Bloodmobile parked in our school parking lot to give blood. They are usually thrilled to pieces to have O- walk in the door, but this time they turned me away. After passing my iron test, I flunked my blood pressure big time. 160/120. I, quite naturally, had a pounding headache (that I’d had for 3 days) and my heart was racing. This isn’t normal for me, so I chalked it up to stress, but made a mental note to call my doctor.
Later that day, I had yet another person make a comment about me needing to buy some more clothes from “all that weight” I was losing. I kept telling people that I wasn’t on a diet, and may have lost just a few pounds due to being so busy.
During Christmas break, my back went out and just didn’t seem to be able to get it back to normal. Right about that time, I also began to have intermittent pain in my right side. And then two days before returning from Christmas break I came down with what I thought was just another case of bronchitis. I returned to school on a Tuesday, stayed two hours, and went home to crawl in bed.
The next day, I had a scheduled doctor’s appointment (that I had made following that blood pressure incident). Imagine my surprise when the nurse weighed me and told me I had lost 29 pounds in just a few months. And I hadn’t been on a diet. The doctor walks in and starts asking about the weight loss, the blood pressure, the abdominal pain, etc. And then he discovered that I was tachycardic, with a heart rate of 122. After taking in this assortment of symptoms, listening to my lungs, doing an EKG, and hearing me confess to being terrified of pancreatic cancer (following the death of my stepmother), he ordered up a mess of tests. At 38, cancer isn’t the first thing a doctor worries about in a patient, but, with my symptoms, he spent a lot of time with me and patiently detailed a long list of possible concerns. Among them were lupus, adrenal tumor, cancer, thyroid problems, and plain old-fashioned stress. Having watched someone I love die of pancreatic cancer, that possible diagnosis is a real terror for me. This somewhat irrational phobia combined with the doctor being clearly concerned about me, I must have had the deer in the headlights look about me. He offered me a few days of Xanax to keep calm until the tests returned. Not being one to normally like pain killers or sedatives, it’s a statement to say I readily accepted them.
I thought I was being relatively calm until I approached the front desk. That’s when the nurse informed me that the doctor was referring me to *Dr. Smith. At that point, I heard no more and reason flew out the window. *Dr. Smith had been my stepmother’s oncologist prior to her death. I walked out to the car where my husband and kids were waiting, petrified my children might not remember their mother. I called my best friend, a physician in Vermont, who proceeded to tell me to calm the heck down and assured me over and over again that it doesn’t work that way. ”We diagnose cancer first. We don’t send patients to oncologists out of suspicion. You heard wrong. Call back.” The next morning, after receiving a call from *Dr. Smith’s office setting up an appointment and panicking all over again, we called my doctor — only to discover that there are TWO *Dr. Smiths in our small town and that I would be going to see the gastrointerologist, not the oncologist. Feeling stupid and enormously relieved, I went to do my blood tests and get my chest x-ray.
I had calmed down again and was lying in bed the next morning when the nurse calls and informs me that my chest x-ray looked a little funny and that the radiologist was concerned that he might have seen a blood clot in my lung. I know what a pulmonary embolism is — and it ain’t good. She then tells me to leave the house immediately and go to the imaging center for a CT scan of my lungs. Well, 2 1/2 hours later, my veins won’t stop collapsing and they can’t get a scan. So I go home to wait on some other test that can also inform the doctor of a blood clot. He called me all weekend (a most wonderful doctor). When my chest began to get worse a couple of days later, they sent me to the hospital for a second attempt at a CT scan. It revealed no blood clot, but a hidden case of pneumonia. By this point, my other tests had come back. Everything but a test possibly indicating lupus came back with good results. My six days of abject terror were over. I still have to see a rheumatology team and return to the gastrointerologist for possible kidney and liver ultrasounds, but cancer is not their worry at this time.
It was the most terrifying experience of my life. A few years ago, worrying about being so ill would have terrified me for other reasons. I would have worried about the countries on my bucket list I haven’t visited, that I might never publish my novel (that has yet to be written), that my soul might not be right with my Maker, etc. But the only thing I obsessed over during those days was my children. Being 4 and 2, the odds of them remembering much about me had I died were slim. I worried about my daughter not having a mother’s influence. And I was terrified that I wouldn’t be here to advocate for my autistic son. It killed me to think I might have to leave him behind, never knowing how much progress he might make. I could hardly look at them without tearing up. For the first time in my life, I understood what real fear was all about.
I’ve learned some important lessons over the past few weeks. They are:
1. Life is way more fragile than we think it is when everything is going well.
2. It’s so easy to get caught up in worrying and complaining about what you don’t have. It takes only thinking about what awful things you could have on your hands to give you some perspective.
3. Stress really does kill. When you allow yourself to get run down and overwhelmed and suffer chronic sleep loss, your body will take note and force you to pay attention.
4. It is important to learn how to say “no”. If you keep saying yes to everything people ask of you, it will catch up to you.
5. Things are rarely as bad as you think they are in the witching hours of worry in the middle of the night. Calm down and breathe.
I realize that I didn’t dodge any literal bullets, but I sure feel like I did. It was scary enough to me at the time that I plan to make some positive changes in my life and health. And one of them is the realization that the only thing that is really worth worrying about is my children. Yearbooks, book fairs, projects, web sites, and autism cannot be given the power to make me sick. If I give them that power, I risk depriving my children of me. So, it’s time to suck it up and think about my world and my worries just a little differently.
So, though I still have pneumonia and feel like I’ve been run over by a bus, I am unbelievably grateful for my blessings. I wasn’t going to make a New Year’s Resolution, but found I ended up with some after all. Namely to worry less, take better care of myself, and focus on gratitude. Feeling thankful today for wake up calls - the kind that turn out to be nothing, but mean everything. 
Looking forward to posting reviews in the next couple of days of two books I want to share with you. What I Wish I’d Known About Raising a Child With Autism by Bobbi Sheahan and Kathy DeOrnellas, PH.D. and In His Shoes: A Short Journey Through Autism by Joanna L. Keating-Valasco. Stay tuned.
When I made the decision just a few short weeks ago to start writing this blog, it was partly because I felt isolated. We do not have an active support group for parents of autistic children in this county, or any active support group for special needs parents of any kind for that matter. I knew that there were other parents of autistic and Asperger’s children in the school system, but - because of student privacy issues - also knew that I cannot contact these parents out of the blue to ask them to to join a support group. So, with the exception of one other set of parents that I knew, whose ASD child is several years older than my own, I felt rather singular.
With the WordPress.com address in hand, I set out to make connections that I didn’t believe I could find here. And, boy, did I find connections. Suddenly, I am corresponding with people from Australia, Columbia, England, Vietnam, South Africa, and more. I have met parents of grown children who have been where I am now. Parents who amaze me with the ability to juggle two, three, four, or more ASD kids within just one household. And parents who are right where I am now - just beginning, with way more questions than answers.
So, I find it somewhat ironic that, in my effort to explore the blogosphere and world for people like me, I ended up coming across one right here in my small town. Earlier this week, while sitting in a waiting room, a woman whom I was chatting with noticed my new necklace pendant. My father gave me a silver puzzle piece pendant for Christmas. When I began to talk a little bit about my son, she told me she had suspected so because of the puzzle symbol. And as soon as I began to share with her that I write a blog about it and have found this wonderful community of people like us out there, she began thanking God - talking about how alone she had been feeling all this time. I gave her my blog address and asked her to please contact me on it and that, maybe, we could find a few other local people to start a support group.
She began to tell me about her child, her struggles to get anyone to take her seriously, and how, because of lack of understanding in her family, she has been keeping the diagnosis a secret. Here she is, in the very same small town, feeling isolated because of a lack of understanding and a lack of parent support and community education about ASD. This tells me that, despite the wonderful progress being made, we simply haven’t come anywhere near far enough. For, if 1 out 0f 91 children had a particular disease, you could bet there would be a lot more governmental and public attention - as well as enormous community support for its victims. But take a developmental disorder that makes some people feel uncomfortable - or inexplicably embarrassed - and you end up with all these little families like islands unto themselves. My heart broke for her and for her obvious desperation and fear.
I’ve been catching a little local displeasure this week. And, let me be the first to say that I am new at this. Putting myself and my children out there for the world to see has been a new experience to say the least. Perhaps I didn’t do it so well. Perhaps I should have used an alias. Regardless, I’ve made the bed, and it’s a little late to undo it. I have been questioned as to whether or not it was the right thing to do to share my children’s lives. I have upset people who feel that I have hinted connections to them to via this blog. For that, I’m sorry. When I began this blog, I thought that I might get 100-200 people who might follow it and be a source of shared experiences for me. I certainly didn’t expect to go viral. I didn’t plan for anyone local to recognize clues to any real people as I didn’t really think anyone local would be taking note of an obscure parent autism blog to begin with. Obviously, I am going to have to work on making some actual experiences a little more hypothetical and not alienating real people, for that is certainly not my intention. Lesson learned.
But I have learned something else that I wish I hadn’t. People clearly do not want to talk about or be associated with autism. For, if a child were stricken with a life-limiting disease, there would be dozens of Facebook fan pages popping up. There would be fundraisers and a local biker group doing a benefit ride and charity concerts. And - no one- and I mean NO ONE would be the least bit upset to be connected to it in any way possible, would they?
No, autism is not a disease. It is not contagious. It is not even a tragedy in its higher functioning forms. But, in its severe forms, it darn sure can be life-limiting. It can rob our children of communication. Their parents might not ever, ever, hear the words “I love you” from their children. It can rob our children of friendships, because some cannot connect to others. It can rob them of an education, because they might not be able to learn the way they need to. It can rob them of affection, because they might not be able to withstand the physical discomfort of their own mother’s touch. It can rob them of dignity, because they might not be able to be toilet trained or be self-sufficient in adulthood.
If that isn’t life-limiting, I don’t know what is.
I’m angry right now for every mother and father I’ve heard from who are facing the challenge of autism alone. I’m angry at their families, who persist in convincing them they have something to be ashamed about. I’m angry at school districts around this country who are ignoring the fact that so very many children in its classrooms are affected by a condition that needs specific, research-based interventions to help them reach their potential. There are districts around this country without a single expert in autism even advising them, let alone teaching and providing therapy to their students. I’m not getting political and making a plea for more money. I’m suggesting we take a good look at the money we are already spending.
And I’m angry for this one loving mother, feeling alone and powerless in a family and world that sends messages to her to keep silent and, thereby, ashamed. I’m angry that she has to listen to child care providers who suggested, through their ignorance, that autism is synonymous with mental retardation. I’m angry that the only person she feels she can connect to is a complete stranger in a waiting room. People, I think we can do better than that.
So, I may not be doing this right. I may be stupid in my belief that transparency is the way to de-stigmatize ASD. I may have made a mistake putting our lives out on display. But I can’t help but believe that the more people who are out there telling the world about their children and shouting the need for autism awareness and support will one day mean there will be fewer families enduring this alone. And fewer children trying to stumble their way alone through a world that, with just a little more awareness and a deliberate approach to educating autistic children, could help them to realize the futures and dreams that all people share for their children and for themselves.
When are we, our families, our communities, our school systems, and our country going to stand up and admit that the Emperor is not wearing any clothes?
So you’re wondering if your child might be autistic. I know. I’ve been where you are sitting right now. Searching the internet for signs of autism spectrum disorders. Going back up to the search bar to enter a different set of keywords, hoping to find some other site that will assure you that these strange behaviors your child has been evidencing are perfectly normal. Telling yourself he is just a little behind. Sharing your worries with a friend or family member, calming down for a day or two after being reassured by them that, no, it isn’t autism. And now you are wondering if you are just being paranoid. You’re worried that you might be borrowing trouble that you don’t need and possibly stigmatizing your child with a label that will follow him around for life. Yep, I’ve been there - and quite recently.
What does autism look like in a young child? Well, the important thing to remember is that, just like everyone else on the planet, every autistic child is a unique person. There are common behaviors that they share, but a child can still be autistic and not share every common autistic behavior. Remember that. Because getting hung up on that can make you fool yourself. Autism spectrum behaviors do not exist in isolation. Just one of them won’t make a child autistic. But you put several of them together and you’re possibly looking at an autism spectrum disorder of some kind.
The one that seems to be noticed first amongst the greatest number of parents is a concern that your child might have a hearing problem. I honestly don’t know anyone with an autistic child who hasn’t worried about this. I’m sure there probably are some. I’m just trying to tell you that a concern about a hearing problem is really common. You might notice that, despite calling your child’s name repeatedly, that he doesn’t respond.
You might also worry that he has some kind of persistent ear infection. Why? Because you might have noticed your child repeatedly covering his ears. Especially if it is noisy or chaotic. You have probably taken him to the doctor, only to be told there is no infection - perhaps more than once.
You may notice that your child doesn’t seem to know how to play with toys correctly. Instead of rolling his little truck around (or kissing her baby doll), he just sits and repeatedly spins the wheels. Or bangs the baby doll, over and over and over. And over some more. He might fixate on a toy that isn’t a toy - such as a plastic hanger, a spoon or a string, or a button on your shirt. You’ll try to interest him in something else, and he’ll drop it and go right back to the non-toy.
You probably bought him a lovey of some sort. You may notice that your child doesn’t have an attachment to any sort of stuffed animal or blankie. Instead, he just might carry around that plastic hanger everywhere he goes.
He probably at one point was a good eater for you. But suddenly, you may start worrying about all the foods he will no longer eat. He may have once loved bananas, but now won’t touch them. He might begin to refuse everything but dry foods like crackers or chicken nuggets. He may consent to eat only one food period. And withholding food a little longer to make him hungry won’t work. He’ll just cry and stay hungry until he gets the only foods he will eat.
Your child may not show affection in the same way as other children. You might find him squirming away or resisting being cuddled. Or you may find the opposite. He may have strange ways of loving all over you, rubbing his arms and legs all over you, maybe even strangely wanting to run his mouth all over your arm. His odd ways of handling touch may also include an aversion to touching things that are wet, or gooey, or crumbly. Or you may find him smeared all over with anything spreadable he can get his hands on, rubbing it in over and over again.
You may have noticed that your child does not point to what he wants. This is a big red flag. He also may not ever bring anything to your attention, like a toy or the stars. In fact, you have may have noticed that he doesn’t attempt to share your attention, like turning to see if you saw Elmo do that silly thing. And, if you try to point something out to him, his eyes might not follow the direction in which you are looking and pointing.
You might be losing a lot more sleep than you did with your first child or what your loved ones told you was typical. He might not have ever settled into a sleeping pattern and may continue to wake you repeatedly each night.
The thing that might be worrying you the most is that he either isn’t talking or that he stopped saying the words he used to use. He might not be saying single words such as mama, daddy, ball, juice, etc. by 18 months. Even more disturbing is that he might not try to communicate with you in other ways, such as taking your hand and leading you to what he wants. He might be delayed in other ways as well, such as crawling, walking, using a spoon, etc. When he does walk, you may notice that he prefers walking on his tiptoes.
And, you just might have noticed something strange he is doing with his arms. It looks a little like that hand flapping that people do when they bite into something that is way too hot. Except he does it a lot. Especially if the TV is on. He may just flap away. And stop. And then flap again. And maybe moan or grunt in his excitement. (Please don’t try to stop him from his flapping. If he isn’t autistic, he’ll stop one day. If he is, you are trying to stop a mockingbird from singing. It is simply how he expresses his excitement. You’ll get used to it, don’t worry. Flappiness? It just is.)
So now the Theme to Jaws is playing in your head. And you are asking yourself, “What do I do? Should I call my doctor? What if he doesn’t have autism? What if everybody finds out and treats him differently?”
Here’s what you should do.
Call his doctor. Explain to his doctor each and every one of the symptoms your child has. If your doctor waves away your worries and says, “Let’s wait a little longer and see”? Either convince her, insist, or see another doctor. Even very good doctors may not recognize some of the signs.
Get an autism screening. I’ll repeat that. Get an autism screening*. Even if your child were falsely diagnosed with autism-even if he is simply a late bloomer- it won’t make him autistic. He’d simply continue to thrive, and you could throw that diagnosis in the trash. Or get him undiagnosed. A false diagnosis is not the worse thing that could happen. The worst thing that could happen is that your child is autistic and would miss out on years of beneficial therapy. The worst thing that could happen is that dark regret that would haunt you years from now that you didn’t trust your gut. There are a lot of special needs parents out there who can tell you about that. Don’t let that be you.
And if he is autistic or has Asperger’s? You know what? You’re gonna be okay. Yes, I’m talking to you. Don’t believe all that foolishness about it taking a special person to raise a special needs child. It doesn’t. It is the child who makes you special. Really.
You are going to grieve. You are going to grieve for things you took for granted that may not come to pass. He might not ever play Little League, be a Boy Scout, or skateboard. Then again, he might. The not knowing is the hardest part. Hope is a roller coaster. You will need to remember that your child has not been taken from you. This is the child you were given all along. And no one, no one, is better suited to be his champion. You are allowed to cry. Try not to do it in front of him. And then you are going to have to put on your proverbial Big Girl (or Boy) Panties. Suck it up. You already knew you’d walk through fire for him. So suit up.
And I’ll tell you something else. Autism, at its worst, can rob you of a lot of things. But it doesn’t have to be a tragedy. It’s still early. Autistic children may not ever learn to talk or care for themselves. But they will still give you joy and teach you many things about love and gratitude. Autistic children may grow up to need support, but have happy, productive, and fulfilling lives. Some autistic children may go on to great things, their minds uniquely suited to bring something to humanity that it hasn’t seen before. You know about Einstein, Mozart, Andy Warhol, Temple Grandin, Dan Aykroyd, and other successful people across the autism spectrum don’t you? Yep, they are or are suspected to be [have been} on it. But there are a lot more people out there on the spectrum who are co-workers, friends, parents — just everyday folks who see the world from a different vantage point- than you might expect.
Then, with diagnosis in hand and therapies started, reach out. Join a support group. Read books. Write a blog. Advocate. Join the online autism spectrum community - made up of ASD people, their friends and loved ones, doctors, therapists, teachers, and more. They are an amazing group of people whose arms are open to you. (I just made that discovery myself.) And repeat to yourself: I can do this. This is not a tragedy. And I am not alone.
For you really are not alone.
Note: Little girls can, of course, be autistic as well. For the sake of brevity, I used a male pronoun.
*The autism screening test for toddlers is called an M-CHAT, and it’s free. You can even print it off the internet. Either way, your doctor will know about it.
