Sunday, March 28, 2010

The Blog Post Heard Round the World (Re: Autism)

We are not an autism family. But we do have one thing in common. We can really create a scene when out in public.

One blog that I read, Raising Complicated Kids, mentioned a story that is becoming very popular in the blogosphere. All because of one very snippy post from a Christian homeschooling mom showing very obvious intolerance towards a small child with autistic symptoms (although no one really knows if the child is autistic or not). I was intrigued, especially knowing what it's like to stand out in a crowd, and read as much as I could about this story. Many many autism blogs (mostly parents of kids with autism) are speaking up about this. As they should!

Anyway, I'm not gonna get into who's right and who's wrong or who should've said what. I think it speaks for itself. And if you're like me, you should be used to the general public not giving a crap about being educated, learning tolerance, or if they've offended you and why. So, this is just not surprising to me.

But it did remind me of a very common problem all of us parents of "different" kids face. Judgmental on-lookers. And boy have I run into those!

Before we knew Taz had a diagnosable reason for all the issues we were having with him, I was part of a Bible study group at my church. Those days have long been over. Not because I have a problem with the Bible, or church, or God. I just don't have the time. Anyway, Dh and I were extremely discouraged and frustrated that the multitude of parenting strategies we had been trying were not working in the least. Things were getting worse and worse and we felt like giant failures. We sucked at this kid thing! I'm sure we've all been there.

So, we had a babysitter for the evening and went to Bible study hoping for some support and relaxation. We brought up our concerns and it turned into a parenting debate. All the adults in the room, some parents, some not, believed that spanking was the only way to discipline, and that clearly was the source of our problems.

We just weren't laying down the law!

We weren't showing him who's boss!

We were letting him walk all over us!

Ha! If only they knew us now (they don't. We ended up leaving that church shortly after). At the time I thought they might be right. Not about the spanking part, about the rest of it. We were doing something wrong!

One of the women present at this group had worked with me at a daycare for about a year previously. We shared a classroom briefly and during that time had worked with one little girl (she was almost 3) who was very, very difficult. I will admit, before becoming a parent I too passed judgment (silently) from time-to-time when witnessing toddler tantrums and such. But, having worked in the special education field, I had experience with non-typical children as well. So I tended to be more gracious and understanding than your typical non-parent bystander.

This little girl we both had the "pleasure" of knowing was extremely moody, to say the least. Looking back, she reminds me a lot of Taz. I would speculate she probably had some form of mood disorder brewing in that little toddler brain of hers. But she aggravated the hell out of the friend I worked with. My friend blamed it solely (solely!) on the parents. I mentioned several times that the child seemed to have a real problem. But no. No, no, no, no. The parents were trying to be her friend. They weren't authoritative enough. It was entirely their fault despite the fact that this child had extreme difficulty during transitions, especially waking up from nap, was sensitive to touch, would have unprovoked crying spells that lasted a long time then be chipper and happy the next moment, and had these issues no matter the teacher or classroom.

This friend, very commonly, did not believe that children could have a disability that couldn't be "fixed" by a bit a firm but loving parenting. She believed that children truly were a product of their parents. How scary for her future children, right? Under my breath I said a prayer that she never have the privilege of raising a less than perfect child. I would really fear for them.

Imagine trying to "beat" bipolar out of a child. Truly terrifying.

This is the type of mentality running rampant through our society. If she knew today that Taz was diagnosed with Bipolar Disorder, I shudder to think what she would say. Probably the same BS I hear other people say. It's over-diagnosed, it's made-up by pharmaceutical companies, parents are lazy, doctors just want to make money, blah blah blah.

And actually, it's much easier to cut these people out of our lives than waste the time and energy trying to change them. I've been there before. Trying, desperately, to find the words to make them understand. And feeling so helpless and frustrated when they don't.

Hence why it's easier sometimes to just say Taz has autism. (Ironically, he can look very much autistic at times. He rocks, he makes strange noises, and he lacks some social awareness).

He can also look very much like a brat.

My favorite story of public humiliation was an afternoon with Taz at a drugstore, just him and I, to pick up toothpaste and tylenol. It was crowded that day. And this was before we started medication. Taz was completely manic. Anytime we're out in public he never holds my hand. It would be useless to insist on it. We would just end up leaving because he would get aggressive. He does, however, generally stay near me. Sure, he may be frog hopping on the floor or crawling under the clothing racks, but he stays within eyesight. Mostly because of his own fear of losing me, which is very helpful, although sad that he feels that way.

So. Like I said, he was very manic, before we knew what manic was or that we should never take him out like that. I was looking at the shelf and Taz was running up and down the aisle. I got what I needed and turned around to look for Taz and he was gone. I called him and walked up the aisle towards the pharmacy. In the corner of the pharmacy, near the blood pressure machine, is a telephone. Taz was on it. I don't know why, maybe he had an urgent call to make. But I grabbed him and headed to the front of the store. I held his hand this time because he was grabbing things off the shelves and just being generally obnoxious. And he started scratching and biting me, hence why I don't hold his hand very often. Even now we teach him constantly and urgently about traffic safety because of this reason.

We got to the front of the store and Taz was in fight or flight mode. He wasn't screaming or crying, that's how I know he was manic. He was laughing. There was a line at the check-out so I put my items down on the side of the counter, where the trashy magazines are, so I could hold both of Taz's arms and he couldn't scratch me. He started screaming "let go! Let go!" So I made him promise not to try to hurt me and I let him go.

At this point it was very crowded with people going in and out of the store near where we were standing. Taz started doing his frog-hopping all around the front of the store but staying close-by. Then he started spitting. But it wasn't the hack-a-lougie type of spit that you can really lunge at someone. It was more like baby raspberry spitting. It doesn't really go anywhere except drool down his chin. Not a big deal. To me.

Sidenote: The term "picking your battles" never quite meant the same before Taz as it does after.

Well, Taz started spitting at everyone who walked into the store. Again, it wasn't actually hitting them. Most people didn't even notice. But one lady did. Now you might imagine my mood at this point during the trip. I was frustrated, exhausted, and embarrassed. I'm pretty sure it had been "one of those days" because I remember my feelings so distinctly after all this time. I was at the register paying for my things while simultaneously trying to keep one eye on Taz. As I was getting ready to leave I saw out of my peripheral vision a woman staring, mouth wide open, at Taz. Very obviously shocked and abhorred at his behavior. I suppose, not knowing me or Taz, I would have been to. I don't know if I would have stared with my mouth hanging open, but I might have raised my eyebrows and moved on.

Well. I looked at her- no, I glared at her with probably the most fearsome look on my face I have ever had and I thought in my head, "say something. I dare you!" And I stood there and waited. I was ready. I wanted her to say something. I was like a bomb ready to go off at the slightest threat. I'm pretty sure had she said something, they would've had to call security on me. So it was probably good that she kept her mouth shut (figuratively speaking. It was still open when we left the store).

So I picked up Taz, feeling suddenly very protective of him, and left. I don't know what she was thinking but I'm pretty sure I could guess. It was probably very similar to what that snarky mom wrote about the possibly autistic child on her blog. This woman probably told the story of the rotten boy spitting at people at the drugstore while his mom did nothing to stop him, to various friends and family that day. And then stated that she could have straightened that boy out in a day or two.

Speaking of, I would love to see someone actually do what they say they could for my son. I know for a fact that my son could tear the best self-proclaimed child straighten-out-ener apart. And I would laugh the whole time.

So...what about you? What are your stories?


  1. At my special needs summer camp we go swimming every day. We take a bus across the street, and often times we end up waiting in front of this building when we are ready to head back to camp. One of my campers, a little boy with autism, adhd and a serious speech impediment walked past a car parked there. Now this child is the friendliest, sweetest boy ever. He just wants to say hi to everyone, he knows the entire camp by name. So he stops, and looks at the car. The windows are down. The car is parked and turned off. I'm standing next to him.

    The woman gets out of the car and looks at him. This is a child that has physical features that seem to indicate he has some sort of special need. She says "Little boy you should not be talking to me (note, he said 'look a car!' to me, when he spotted it) you don't know who I am and I could snatch you up and steal you away and do you serious harm."

    She strides off, shooting a dirty look at myself and the other three staff members. There are 8 kids. 4 staff. It's THAT kind of a camp. Will looked at me and his little face crumbled. he silently walked back to the bench and sat down. (note, he NEVER does this. he's very ADHD and always on the go) He stayed silent, and the lady walked back out. She said "you know, you really should be teaching them not to talk to strangers. You don't know me. I'm not dangerous but I could be"

    We were all speechless, but someone finally whispered to her "lady, this is a SPECIAL NEEDS CAMP. These kids all have various special needs. We've got it under control" and she just waved her hand and drove away.

    For the entire bus ride back Will was silent, and very subdued. This lady had been rude to him and esentially squashed his spirit a bit. I asked him if he was sad about the mean lady and he nodded and bit his lip. I hugged him and told him that I wasn't going to let anything happen, that he was my willzie and that I loved him and everyone at camp loved him and that we were so glad he was there to greet us every morning (he runs into camp every morning going MOLLY! I LOVE MOLLY! and leaps into my arms. It's amazing)

    I wish I had said something to that woman. She clearly didn't get it. Should they know not to talk to strangers? Probably. But at the same time, they should also know to tell us that they have to go to the bathroom, or that they're happy or sad, and quite frankly, we're still working on both of those.

  2. It just kills me when people blame the parents. Most of my kids that I work with have autism, and a lot of them display behaviors of autism in public. It's part of who they are. I have heard of parents crying because their child had a meltdown in the supermarket and someone came over and told them they weren't fit to be a parent. It sucks. They already have enough going on in their lives, they don't need guilt and judgement from random strangers!

  3. This post made me laugh, only because I’ve been there! For me it was in Target, and the woman gave my boy a horrible look, and I couldn't hold it in, instead I just barked at her "I'VE GOT IT HANDLED!!” The poor woman didn't know what my deal was, I was pushed too far and couldn't keep silent.

  4. What a great post! I have both bipolar and autism in our household, so we get it. Boy, do we get it.

    I have felt that frustration, anger and humiliation more times than I want to ever remember. I too have shot the death look at bystanders, and carried my children out of stores, libraries and other public places angry and crying all at the same time.

    We also had well meaning neighbors and church goers wanting us to simply "spank" some sense into our children.

    Although most days I can just ignore the ignorant, there are times when the smugness and judgment just get to me. The day I wrote that post was one of those days.

    I'm just glad for this online community where everyone gets it.

  5. Oh boy, can I relate to this story!!!
    Lately I'm finding it almost impossible to take my son out. Unlike Taz, my son wont let go of my hand... He has a huge fear of heights (and high ceilings - kinda hard to explain) - he gets dizzy & a sense of vertigo. So, when this happens he grabs me & almost pulls me down. (he's about 3 inches taller than I am) Last week when we took him to the game shop to get him a new xbox game, he got angry at something - I can hardly remember what it was now. And in the middle of this small, but VERY crowded store, started throwing things,and calling me every name in the book! It was embarrassing to say the least! I hate the looks other people give me - like, why can't you control your child? I've even had a few make rude comments to me. I suppose on the outside looking in, it does look pretty bad. I try to ignore it, but it is hard.
    I like what you said about 'picking your battles' too! That used to be one of my mantras with Nick!
    And, I'm learning slowly, when to take him out - and when we should just stay home...

    Have a great day!

    Thank you for the comments you left for me! I'm glad I found your blog as well! :-)

  6. It's always our "fault". I'm not being strict enough. I'm being too strict. If only I loved him more. If only I gave him some room.

    Sigh. This was well said. Boy, do I understand.

  7. I had one when Julia was little--note, my kids have cleft lip and palate, Julia also has amniotic banding. Walking around the square in Madison and Julia is tired, hungry and just plain cranking. She's about 18 months old. So, she's crying--and I'm a bit pissy at this time. This "older " lady asked me if I couldn't shut my kid up. I looked at her and asked her if she was capable of shuting her own damn mouth (I said I was pissy). I kept walking at that point--and no her mouth wasn't shut--it was hanging wide open! Just goes to show everyone seems to have an opinion about everything. I've just gotten to the point I address it head on. One day, just last year, we were in Kohls and some younger girls were looking at Julia's hand and poking at each other and nodding at her hand. I looked at them--straight on--and said "she's has amniotic banding". Straight on, no hiding. Not sure if that makes me a b---- or just a mom who holds nothing back.

  8. One of the reasons I started home schooling was that I got SO VERY tired of the discipline-fixes-everything attitude of the school. My son is bipolar and mildy autistic and was in an autism home room in middle school, but so smart he wasnt in specail ed rooms for academics, and two teachers ended up trying to play power games with him, ending up with one teacher calling me at home demanding he be removed from my class (but at the iep meeting, changing her tune and saying he knows whos fault this is), and another teacher refusing to let him leave the classroom when he was starting to panic and pushing him to the point where he threw a book at her and got an in-school suspension. He had one adminstrator walking him around once because he was not 'obeying the class rules' and my son just wanted to go home, and finally he said "I wish you would just expell me". THe administrator said, you havent done anything wrong. So my son hit the administrator . .. who called me to take him home.

    What a total waste of time. When my son says he is upset and needs a break, he gets a 20 minute break, and he's ready to go again. His home room teacher knew that, but his classroom teachers said no, its not a specail needs issue, its a discipline issue. urrggg.

  9. OH yeah, love a good 'store story'. We were at a big box, and Genea decided to take a different path. Away from me, running. So I walked behind her tracking her until we got to the door, where I took her arm, she would not let me hold her hand. She dangled and lurched around and I dragged her to the car thru the parking lot while she shrieked and wailed and dug her nails into my hand trying to release her arm. The whole time I am very casually, lyrically saying, do you think this is going to work for you? Hmmm? Do you think this is a good idea?
    I have a great set comment for nosy busy bodies but my look of death must be too strong because I have never had to use it. Seriously! Anyway, I wait to say, "LISTEN LADY/MISTER, YOU HAVE NO IDEA WHAT YOU ARE JUDGING HERE, NONE!". Sigh. Sadly, I still have not been able to use it!!!

  10. There's others that go through this...oh my gosh, I so can relate! Love the helps me feel not so alone raising my daughter.