Although I do share Moose’s story here, I’m not one for campaigning for autism awareness, or supporting organizations that do. However, today is World Autism Awareness Day, so I thought I’d pass the word. If you want to wear blue today, in support of Moose and other children, (and their families), like him, feel free. And if you happen to see a house or building, (especially in a major metro area), lit up in blue lights, well that’s why.
On Tuesday, I met with Moose’s teachers and therapists (and the school psychologist), to review his progress of the last year, and set goals for him for next year (Kindergarten!).
This is the third annual review I’ve attended for him, plus the meeting where we set goals for him before he even started school, when he wasn’t yet three. While I’m thrilled with the progress he’s made, for some reason, these meetings always make me nervous. At first, I couldn’t even identify why I had a knot in my stomach all day, and then it hit me–I was worrying over his review. Worried about what they’d have to say about his progress and behavior (which is ridiculous, because it’s always all good), worried about what the goals would look like for the next year, worried at just the thought of him starting Kindergarten.
I really didn’t need to worry. The reviews of his progress were excellent. He’s meeting most of his goals at least 75% of the time, and many of them 90-100%. Everyone who has worked with him commented not only on his achievements and perseverance, but on his attitude–what a funny, sweet little boy he is. His teacher even got a little teary-eyed at one point talking about him, which almost got me started, but also made me feel really good. The goals for next year, while daunting when written out on paper, are not outside the realm of his capability. Even talking about Kindergarten wasn’t terrible, although I did cry a bit at home over the thought of him being in school full days next year.
I’m going to be dealing with these meetings every year, and I’m sure that I’ll always feel some apprehension beforehand, but with every good meeting that I have, I’m hoping that anxiety for the next one diminishes a bit!
While I’m glad that people are starting to look past vaccines as the cause of autism, this article might as well say “we have no idea.” First of all, you can blame just about anything on genetics, (not that I don’t think that may play a role in autism, but a generic “genetics” label is about as helpful as informing the world that “rain is wet”), so until they can pinpoint what they mean by “genetics” a little more specifically, I don’t find that to be particularly helpful or revelatory.
And then, to contrast genetics as a cause, there are the ever-present “environmental factors”–pesticides, drugs, etc. Again, if it can’t be pinpointed better than that, this is not really new information. Of course environmental factors can play a part in pretty much any disorder, but which ones? Why? And is there any way to reverse it? These are the questions that should be being asked (and answered!).
I, for one, would respect these researchers a whole lot more if they could just say, “We have no idea, but we’ll try to figure it out,” and then get to work, figuring it out. Broad generalizations and too many varied culprits aren’t helping anyone, and can really hurt the parents of autistic children more than they help.
Back when I was in high school, I began to really question the wisdom of the whole Santa thing. This was partly because my youth director shared with us why he didn’t do Santa with his family, and partly because, the more I thought about it, the more inappropriate it seemed. Celebrating the birth of Jesus isn’t good enough on its own? We have to make Christmas more special by playing the Santa game? (This issue bothers me even more at Easter, but that’s another story…)
My real concern, as I got older, though, was that someday, when I had children, my lying to them (and I don’t care what kind of pretty bow you put on it, that’s what it is), could cause them to question other things I told them to be true. Specifically, would it cause them to doubt their faith, and wonder if, since I lied to them about Santa, maybe I lied to them about Jesus, too? And that happens–I’ve met many adults who have had such a crisis of faith, and while some of them came out if fine, some of them lost their faith, and that’s just not a risk worth taking.
When I met Ryan, I found that he had the same feelings about Santa that I did, only more so. And so, we decided that when we had children, we just weren’t going to do it. Of course, we’ve taken some criticism about it, and we’ve heard it al–we’re leaving all the fun out of Christmas, we’re not letting them be children, we’re not letting them experience the magic of Christmas, blah, blah, blah (and all this just emphasized everything that’s wrong with our culture’s obsession with the jolly fat man!). Some have even assumed we don’t celebrate Christmas or do gifts at all! (Because we choose not to participate in the secular aspect of a Christian holiday? Figure that one out!) But we’ve stuck with it, and while the children know about the myth regarding Santa (and they also know not to spoil it for anyone else), they have never expected Santa to bring them presents.
But what I didn’t know, way back when we made that decision to leave Santa out of our holiday plans, is that I would someday have a child with autism. But God clearly knew about it when He put these hesitantcies on our hearts, and I’m so glad we listened. You see, autism makes abstract thinking a challenge. So there are two potential bad results of doing Santa with an autistic child. First, if they’re taught to believe that it’s true, they may keep believing long after it’s appropriate to be playing make-believe like that. This could cause them to be ridiculed at school, because it’s just one more way an autistic child would stand out as “different.”
Worse yet, the abstract nature of Santa, once realized, could truly cause them to doubt Christ. Not just in a little kid having a tantrum kind of way, but in an autistic, “if I can’t see it, it must not be true, especially since I’ve been lied to about this other thing kind” of way. This was my original fear about playing Santa, only magnified by a lot–because the autistic brain simply works differently than typical brains. Faith issues are a constant worry anyway, without adding man-made reasons for doubt.
Don’t get me wrong–I have no ill will towards people who choose to do Santa with their families. I grew up with the game, and I seem to have turned out OK. And I’m not telling my children to ruin for anyone else (and they haven’t, although they do live in fear of being asked what Santa is bringing them if other children are around!). But I am so glad I listened when God placed this on my heart, because there’s no way I could have known back then just how horrible it would have been to start down the Santa road when we had our first child.
I try not to use my blog as a platform for ranting, but Portrait Innovations has me so angry, I want to spread the word, so other people don’t have the same bad experience we’ve had.
We went to Portrait Innovations last year for the third time for Christmas photos (we’d had some other pictures done there as well over the years). We started with our Christmas portrait. Actually, that’s the only reason we were there–to get a Christmas picture of just the children together. Even though we had the first appointment of the morning, we had to wait for the “Christmas studio” to clear, because the other family scheduled walked in the door first. OK, fine. So, we finally got in the room, 20 minutes later than I was expecting, but we were still doing OK. The children had their picture taken, and it was a decent picture, even though I wasn’t thrilled with it. The photographer wasn’t, in my opinion, very good with children, and certainly not good with a child with autism, which is unfortunate for a portrait studio that caters to families, but whatever.
So, I thought we were done. They had taken at least a dozen pictures, and I knew that out of those, at least one would work. So, I was ready to go over to the computers and finalize my order. And that’s when the real trouble started. (Let’s keep in mind here that Moose has autism, and when he is in a strange place, for a long time, doing what appears to him to be nothing, he freaks out. He may cry or shriek or just try to leave, but he doesn’t always do well with unfamiliar situations.) They began telling me that I “had” to go into the other studio, and have pictures taken with a different background, and with different groupings of the children, as well as individual shots. I explained that I didn’t want any of that, that I came solely to take a Christmas portrait, and that we were done with photos. I was again told that I “had” to go in the other room for the “rest” of our session. I told them in no uncertain terms that I would *not* be taking any additional pictures, and that I would leave without anything at all if they continued to persist. At that point, I was told that “this one time” they would let me just select my picture, but that they “don’t do things that way” and that if I schedule an appointment, I “have” to do the pictures the way they say.
That’s funny…the previous two times I had been there for Christmas portraits, I didn’t “have” to do any of that. Yes, there was the traditional hard sell when it came time to order, but I was expecting that. They didn’t try to force me into other rooms for additional pictures, and actually had, in the past, seemed kind of relieved that I didn’t want anything extra, because they were, of course, overbooked, and running behind.
So, I didn’t know what to think. Did I just end up with a really bad photographer, or a photographer having a really bad day? Did their corporate outlook change somehow? I had no way of knowing, so I’ve kept this experience in the back of my mind all year, because I wanted to make sure it didn’t happen again.
I called our local Portrait Innovations this morning, and explained my situation. I wanted to come in when they first opened (not a problem, they still have early appointments available), and I wanted to take only a Christmas portrait of all four of my children. That’s all. And I explained why: I have a son with autism, and if he is forced to sit around and wait, we will not be able to get a picture that is worth buying. I also explained that it would be in their best interest to work with me, because if he has a meltdown in their studio, he will start shrieking (nothing I can do about that), and it will make the experience unpleasant for us, the employees, and their other customers.
Even after hearing all of this, I was told on the phone that we could start with the Christmas background, but that we would also “have” to take some pictures with another background. Of course, they reassured me that it would be “really fast” (what a joke! Because taking pictures with children is ever “fast”), but we would “have” to do it.
Now, I get that these companies need to make money. And I know that the way they do that is by getting people to buy more than the cheap-o package. But I also think they could show a little grace to a family that has a child with special needs. I wouldn’t even mind so much if the second background could just be pulled down like they do at Wal-Mart. But to have the second set of pictures taken, you have to go to a different room, which almost always already has another family in it, and often has at least one other family ahead of you to get in it next. That all adds up to a very long wait, bad enough for children, but unbearable for a child with autism. Not a great business model.
I could just schedule an appointment with them anyway, and then make a fuss like I did last year. But I’d rather not do business at all with a company that is so rigid in its sale tactics that they can’t understand that not all families are the same, and that it may not be possible for us to make it through the appointment done their way. So, I’ll take my business elsewhere, and I’ll encourage others to do the same. There’s just no reason for any company to show that little compassion to their customers.
When dealing with a child who has autism, it can be the smallest of things that make you feel totally helpless.
Moose hates getting his hair cut. Way back before he was ever diagnosed, we took him for his first haircut, and he totally freaked out. They basically asked us to leave the salon (I think that saying, “Maybe you could try to trim him up while he’s sleeping,” is code for, “Please get out of here before you scare the other customers away!”), and so I was faced with the daunting task of trying to cut his hair at home.
Now, this shouldn’t have been a big deal. I’ve been cutting Ryan’s hair for over a decade, and, as Turkey has his Daddy’s coarse (although not curly) hair, I’ve been cutting his hair, as well. A few passes with the trimmer, and they’re good to go. But Moose has hair more like mine–very fine, and kind of thin. So buzzing his hair doesn’t really work, because he ends up looking like he has mange–all you see is scalp (we did try it once or twice, though).
This leaves me with traditional comb and scissors cutting. But I’m not a stylist, and I’m not really sure how to go about it. I can cut the bangs straight enough (at least as straight as I see most other children’s hair–can you ever get a child to sit still enough for it to be perfect?), but the back mystifies me. I know it needs to be layered, so he doesn’t look like he has a bowl cut, or worse, look like a girl with a bob from the back, but I don’t know how to blend the layers properly. It ends up looking very choppy, and it’s obvious that it was done by an amateur.
And that’s where I feel so helpless. I already worry about Moose standing out because of his difficulties–while children with autism don’t have glaring physical differences, they do little things that make it clear that something’s off. I don’t want him to stand out even more because he has a haircut that was obviously done at home by his not-quite-competant Mommy. And yet, I have no choice. While we haven’t ventured back to a salon since that first time, I know that at this point, it’s not even an option. He still ranges anywhere from shrieking to sobbing uncontrollably anytime a haircut is even mentioned, and restraining him is a real adventure.
I just hope that when people see him, they show a little grace in their thoughts and reactions to him, instead of thinking that his parents don’t care enough about him to get him a proper haircut.
I have seen this “test” popping up everywhere. Facebook, message boards, you name it. Everyone is taking the test to see where they land on the spectrum.
Now, my complaint is not with the test itself. I get that is a diagnostic tool, can be helpful when used in conjunction with a doctor, and can be fairly reliable.
What makes me sick is (and I hate using the following word) neuro-typical adults taking this test to see where they fit on the spectrum.
My son has autism. Very little makes me as angry as seeing anything related to his difficulties turned into a trendy Facebook app in which adults who should be more sensitive and reasonable post their results proving to the world how autistic they are (or aren’t). Autism isn’t a game. It’s not a passing fad that makes for a cute test.
I realize that most people who take this test don’t give a second thought to how it might make parents of children with autism feel. I’m sure most people who take it are just curious as to where they fit in, and don’t know how hurtful it is to us to see our child’s biggest challenge turned into a trend. But it *is* hurtful, and it would be nice if people would stop and think before they post their results, and consider that we may not want to see something that we deal with day in and day out thrown into our faces as another joke app on Facebook or a survey on a message board.
Every once in a while, when reading something about autism online, I come across people who still buy into the “Refrigerator Mother” theory.
I can’t even begin to tell you how hurtful this is. Sure, people will say that “probably” not all autism cases stem from this, but then they will go on to provide anecdotal evidence outlining all of the autistic children they know who have mothers with psychological problems, or are detached, or are uncaring, or are uninvolved. So, they may *say* that it’s not the “only” cause of autism, but clearly they believe that it is.
I read stuff like that, and my head tries to know that it’s not my fault that Moose has autism, but the doubt creeps in. Maybe I did do something wrong when he was a baby that made him feel unloved. Maybe I’m not a good enough mother. Maybe I didn’t spend enough time with him or talk to him enough, or, or, or… And this doubt all starts when someone who doesn’t even have a child with autism starts spouting off a bunch of nonsense that they absolutely “know” to be true, based on what they’ve observed in a few cases, and let’s face it, no matter how much they think they know, they don’t have the full story. People rarely do.
And then there’s the other side, where I know that at least some people out there *do* believe it’s the mother’s fault (and how convenient is that? We never hear about “refrigerator fathers,” so only one of the parents has to bear any of the blame at all!), and are looking at my son and wondering what I did to cause this. It doesn’t matter how much I work with him, or advocate for him, or make sure he gets the services he needs, all that matters to some people is that I did “something” to make him be like this.
The last thing the parent of an autistic child needs to hear is that it is their fault that their child has neurological problems–we’re already wondering deep down if we did something wrong during the pregnancy, or during infancy, or something. But to continue to perpetuate myths like this is beyond hurtful, and serves no good purpose other than to point fingers where they shouldn’t be pointing.
It can be a difficult thing when Moose has a meltdown in the midst of a group of people. When he can’t, or won’t, find words to communicate his distress, he resorts to shrieking. He will also occasionally fall prone on the ground, and for added effect, when he’s really upset, thrash about a bit. Basically, it looks like a typical toddler tantrum, from a child who looks like he’s old enough to know better, and his actions cause people to stare, whether they don’t know he has autism, and just think he’s a very badly behaved preschooler, or whether they do know, because really, how can you not look when you hear that sound?
Growing up as a sighted child with two blind parents, I quickly became accustomed to people staring. Even now, I instinctively know, without having to look, when people’s eyes are boring into me during one of these episodes. It doesn’t matter if the looks are angry, disapproving, or simply curious, I can feel it, and it’s uncomfortable.
I can’t help but feel embarrassed when this happens–irrationally embarrassed of myself because I know that people who don’t know about Moose are probably judging my parenting skills and thinking that I’ve done a lousy job of raising him.
It’s my goal, when these situations occur, to leave with him, with my head held high. I will remember that it’s not his fault, it’s not my fault, and if people want to judge, it’s really *their* problem.
It’s something I’m working on.
I have noticed myself lately having to tell Moose to be quieter, or even to stop talking.
I never thought I’d see the day when I’d discourage his speech!
Of course, we’ve seen a lot of improvements in him over the last year or so. There was a big language leap right after school started up again last August. And the Rising Star award he received last fall. So I knew that he was improving, and catching up, at least somewhat, to where he *should* be.
Even knowing all that, I guess I didn’t realize just how much he’s been talking. All of the sudden, he’s finding words to express himself–“I need help,” “Ladybug hit me,” “Funny,” “I want ice cream,” (he is still a four-year-old, after all!), “My tummy hurts.”
That’s all I really wanted for him when this whole school thing started–that he’d be able to get the help he needed so that he could tell us what’s on his mind. He still has a long way to go–he’s not at a four-year-old level for speech or anything, and he can’t put together really long thoughts–but he *can* tell us if something is bothering him, or if something amuses him or makes him happy, or if he wants something (even if that something is ice cream!)–that achievement has been the goal all along!
So, he’s really started communicating, and I’m finding that, for the first time, as with all children, sometimes I need to tell him to stop talking. Part of me hates discouraging his speech in any way, but the other part of me is so very grateful that he’s reached another very “normal” milestone!