Defensive Driving at it's Finest

Some days, you'd never know that my kid has an "issue". Something that places her on the autistic spectrum. Often, people express surprise when I tell them - and I am not a person who imparts this information all that early in a relationship. "She's so quiet - she must be shy!", is an oft repeated refrain.

Nope. She just doesn't like to talk. She also is very anxious about someone she's uncomfortable with looking at her, so she steers clear.

But with people that she's comfortable with, she's a chatty kid and with our family, she's of course very comfortable, and so we are the people who get to see her meltdowns. She used to meltdown in public a LOT more, but in the past two years, those have mostly stopped - why? Because people look at her, that's why. And she can't STAND that.

One morning this week she woke up grumpy. Her grumpy is intense - she's tougher to handle than any of the other kids. There's no joking her out of her mood, no playing with her - whatever is in her way is usually hit/tossed/shoved over/or flat out thrown at you. Yes, I discipline her for it. She's been spanked, spoken to, yelled at, made to sit in the corner or a special chair, made to pick up what she threw - you name it, I've tried it. I've video taped her and showed her the results - which embarrasses her tremendously. And yet it continues.

For whatever reason, she was irritable. She didn't want her sister sitting next to her, so she pulled her hair and then ran away screaming. She was made to apologize and immediately shoved her chair to the other end of the table so she could be away from the dreaded sister. Moving the seat caused her to spill her juice onto her pants and she howled. After breakfast, I sent everyone to get shoes and coats and she refused. She screamed, she cried, she hit herself on the head and pulled her own hair - and when I refused to engage with her - I was channeling the "avoid the tantrum and it will stop" school of hopeful thinking and trying to remain aloof and untouched by the screaming - she grabbed whatever she could reach and threw it my way. A coat. A bookbag. A soccer ball. (The root of THIS particular irritation, as far as I could tell, was that she couldn't find one of her shoes. In my mind, throwing a fit virtually GUARANTEES the shoe will appear...)

So I picked her up, grabbed the offending shoes and tossed her in the van. Let me interject here, before anyone says it -

She's acting out. I know it. It's not a discipline issue - she is certainly disciplined enough. I've spoken to enough people about this that I know it's not a discipline issue but it's a spectrum/being overwhelmed issue.She behaves beautifully at school and acts up almost as soon as she gets in the van, which exhausts me. WHY can't she behave for me? It's not like she doesn't get punished, I don't let the unwelcome behavior continue, I NEVER reward it - and the developmental pediatrician said that it happens BECAUSE she does so well at school - she is comfortable enough with me to let it all out. Yay, me.

And yet. I still feel like a sucky parent each and every time it happens. No matter what I KNOW for a fact - it still gets me, right THERE. Each time, I think to myself, "God, you are such a rotten parent." No flagellation necessary from you guys - I beat myself up all the time.

I buckled her in, still screaming - sorry, my fine neighbors - and walked around to the driver's door. I started the car and backed down the driveway - and saw, out of the corner of my eye, a crayon flying my way. I'd forgotten, in my annoyance to get her into the van so that we wouldn't be late for school, to check and be sure that there was nothing next to her seat. (I have been known to let her scream the entire way to school - and I've been known to stop the car and refuse to drive until SHE stops, but I've learned the hard way to keep the next seat empty. I've been hit by shoes in the past.)

It kind of gives defensive driving an entirely new meaning when you are dodging a shoe coming your way, hmmm? Shoe on your left - swerve to the right! Water bottle approaching - slip back and twist to the side!

I so wish I was kidding - and I'm certain to get the lurkers who want to tell me what a shitty parent I am and how rotten of a kid she is - if you feel like telling me this, remember that this is a kid with a confirmed diagnosis who did more than 2 years of therapy.

Comments

[Alana Sheldahl]

Now that B is old enough to reflect back on her younger years, I'm gaining some insight into those meltdowns and tantrums that she had, that used to "get her into so much trouble". It just confirms that "the rules" just don't apply the same to kids on the spectrum. If I knew then what I know now, I would have been a much more patient and compassionate parent.

I think you are handling the difficult situation as best you can and that is JUST FINE. It's all we can do.

Bethany talks a lot about her melt downs being over being disappointed and frustrated. And to an AS kid, that can have a whole 'nother meaning than for a neurotypical kid.

And yeah, no matter what you know in your head, it still gets you in the gut. I so hear that.

[Sylvia]

I don't think you're a shitty parent at all. I hardly know who has the right to say so because they don't live YOUR life even if they feel theirs is similar. I would be thrilled to read some more about your frustrations. For one, it reminds me that I am lucky that some of my problems are so small in comparison.

Second, and something I've been meaning to mention, is that people NEED education on what it is like to live with and raise a child on the spectrum. I was at Wal-Hell a few weeks ago and experienced something that upset me. An elderly man was shopping with two young children, about 6 and 8 years old. The 8 yo boy was in the cart and clearly autistic. And I'm no expert. He was yelling in bursts and repeatedly hitting himself in the head. What upset me about this was the way everybody around was staring at the man. Wispering and staring, clearly irritated and I don't know, confused or just plain fucking stupid.

I find it hard to believe in this day and age that people do not recgonize autism and have the nerve to stare at parents as if they don't have the right to be out in public with their disabled child, or worse, loudly state how they wish the kid would shut up. Really? Because parents without disabled children can shut their children up easier or faster? And really? People think that it is different to hear a disabled child scream than a cranky, hungry toddler?

My best friend in high school had an autistic brother and it gave me an appreciation, years before I had my own children, how difficult every individual life is.
Don'y apologize to your neighbors. If they need to be apologized to for something nobody can change, then they're not worthy of even speaking to.

As for the flying shoes...well sister, you're just s.o.l. getting advice from me. I've had so many things thrown at my head that I've considered wearing protective gear of some kind.

[KatieButler]

Thank you for putting this out there. I really have come to believe that we don't do anyone a service by pretending everything is perfect in our lives all of the time. Not to ourselves, and not to others. We're all on the same journey, even if we're taking slightly different paths, and knowing that we all have our challenges, however different they may be, makes that journey just a little bit easier.

[Brandi]

Carmen, I appreciate your honesty; my girl may not be official on the spectrum, but I do see some of this unanticipated strife from time to time and always wonder what other moms think and if it happens to them.

[Glenda]

Yes thank you for putting this out there. This is one of the reasons I enjoy your blog. Your honesty about life.

[Thumper]

She behaves in school and melts down with you? You're her safe place. It doesn't matter how mad you get, you're still going to love and cherish her and on some level she probably gets that. She controls what she can and lets go when she needs to with the person she can trust. Sounds like good parenting to me, not shitty parenting.

[Kristen]

My Own Opinion - from a snippet of your life - she does this because she knows you will always love her and be there and it is overwhelming to always behave in the rest of the day at school. You are not a shitty parent (I think you and your husband are great parents), she just trusts that you will always love her no matter how bad she is acting (feeling). You are doing this - and you are doing it well, it may be overwhelming, but you are still giving her the best effort and positive reinforcement. You are doing a great job! You are the best mom for her, don't forget that.

[mm]

I work with families every day and I have to say no education is as helpful as the School of Hard Knocks. When you are in the mall or wherever and your child throws a hissy fit the other parents are just secretly glad that it is not their child. Everybody's child does that from time to time. (Now I gather your child does it a bit more, due to the autism.) The people who don't understand this are the ones who have never had kids or are deluded into thinking "my child is perfect." I am sure many of us who read this are familiar with, at one time or another, taking a screaming child out of a mall or somewhere because the child threw a tantrum for whatever reason. And at the end of the day we say "This has been the worst day ever" and we get up tomorrow and try it all over again.
Hang in there.

[MelissaS]

I agree with Thumper and Kristen in that you are her safe place, where she can act out. It must be so hard for her to "keep it together" and behave well during the school day, and she sees you and feels comfortable enough to let all that pent up frustration out. I know it's not easy. My son is not on the spectrum and still does this for me. He is good all day at school and starts to whine the SECOND he is in the car, all the way home.
That you can handle it with outward calm (even if your insides are roiling) shows your strength and success as a parent. Not everyone would remain so honest about what is really happening. I admire you for that.

[Carrie @ Who Knew?]

I'm a special ed. teacher. I don't usually work directly with kids like your daughter but I'm around them a lot. I can only imagine how hard it is. These kids have such an upward battle and as a parent it must be torturous. Keep doing what you're doing. Eventually things will get better.

[mary]

why is it that people who dont have/teach/deal with special kids like to tell you how to raise yours? they have no idea how it works! tell you what, get one and THEN we will talk!

2 of my daughters do/did the meltdown at home crap/behave at school stuff. Let me tell ya; I dont want to hear it either! BUT BUT BUT they are holding it together at school, like your daughter, when it counts. The older one is now 18 and just loses her mind on occasion. of course neither of them were as bad as your situation. Just sayin. It gives me hope for their adulthood.

My son has learning disabilities and an IEP; had the life planning mtg yesterday. Sucks. He is frustrated he doesnt have the options his sisters did as far as college, etc and what do I say to that? The options he does have "suck" {not really but teens!}

and if you are a shitty parent I am super shitty parent! Carmen her disability is not your fault! You deal with it pretty well girl!

[Amy]

I do not think you should even feel the least bit defensive about this. Research has shown that just as your physician told you and many have commented here, that because you are a LOVING and EXCELLENT Mother, is exactly why she acts this way. She has to put in so much energy to behave in public and at school that is is simply exhausting. Where can she let down? Only in her own home with her siblings and her mother. It is not conscious - it is just that she can let her guard down so it all just comes bubbling up. I am certain you are doing all the "right" things which is getting on with your life (driving the kids to school) and avoiding being pelted! I know it is exhausting, but only if you were a cold and horrible mother would she behave for you all the time - in the long run your relationship with her is what matters and what you model for your other children. They will emulate you in their parenting when they are grown. We cannot choose our children's nature - they are born with certain gifts and issues - all we can do is work with what we are given in a loving and educated manner. You never stop - you always try to find what is the best thing for your kids. After parenting for 21+ years, I can assure you that the parent without any issues is the parent whose head is stuck in the sand. Everyone has something!

[Annika]

I think there should be a video game, or maybe a dark ride (I think that's what they're called, the indoor rides at amusement parks), where the objective is to get through the course without getting hit in the head by stuff flying at you from behind. And I think everyone who doesn't have to live it should be forced to play.

[Nicki]

I know it's hard to ignore the people staring and the comments, but you are doing the right thing. My two older sons have ADHD and a lovely mix of OCD/anxiety, etc, so we, too, have had many lovely drives filled with screaming, hitting, and things being launched at heads. It is hard, so very hard, some days and people being "helpful" or just outright obnoxious pains-in-the-butt don't make it any easier. I, too, would love to have had the child who was such a joy to others, in a particular class, at his friend's house, etc., instead of the shrieking, door punching, hitting themself in the head children I had/have (some things are getting better, but some things are not changing). Really, being the safe place/comfort zone isn't all it's cracked up to be. :)

The point of the book I felt the need to write is that I think you are doing a great job and you know exactly what your child needs. Good for you for doing it and not letting others who don't have a clue get in the way, which some days is quite hard. Stay strong and know that you have an awful lot of people out here who support you and who get it. Just remember to duck and weave when things come flying. :)

[amie]

God bless you ! xxxoooo

[maggie]

Hey Carmen, you are an awesome parent! We all have our bad days filled with doubt about whether we are doing a good job or not. Remember for as many crappy days we have there are the wonderful days as well!

[ReinventingAmy]

I just want to say, I think you're an amazing parent. I honestly don't know how you handle everything. Don't ever think you're a bad parent. Seriously. Just the way you write, you can tell you do your absolute best. I'm sure others would not be able to handle everything you do.

[maybaby]

I've had students diagnosed as "on the spectrum" every year that I've taught (pre-k to middle and high school). Most can hold it together at school, until they are safe at home. Or safe in the car, for the younger ones.

You are not a bad parent. You are a good parent, parenting a child with a difficult set of challenges. Behavior, with neurotypical kids is often their choice and not a reflection of the parents' skills. Behavior, with non-neurotypical kids, is sometimes not their choice and thus not a reflection of parenting skills.

I repeat...your daughter's behavior does not mean that you are a bad parent.

[Jennifer W.]

While my situation was very different, I did the same things growing up. My parents divorced when I was very young. I lived with my mom and was totally convinced of her love and dedication to me. My dad? -- not so much. So on the occasion when I did see him, I'd inevitably have my feelings hurt and take it all out on my mom when I returned to her. Of course, I didn't know it at the time, but as an adult I can see it and I can see it happening with my own students. We are the worst version of ourselves around the people we know will love us anyway. Of course, your daughter lets it all fly when she's around you. She's convinced of your love and dedication to her -- and knows you'll love her anyway. It isn't fair, but it is really a compliment about how much you've loved her!

[lynn mayden]

I am also a parent of a child on the spectrum. When the "fit" is going on I just stay out of the way and talk about it later when he can calm down. He is only 6 years old but I have seen great improvements in him the past 2 years. Everything I have read on your blog tells me that you are a great parent!

[Jen]

I would NEVER give you a hard time about this, I live it too. Perhaps not as deeply, but last week I had to physically carry my son from the schoolyard behine our house up to his room because he was beyond control. He's eight. Sigh...

[Lisa @ All That and a box of Rocks]

I *so* understand. People who do not live with Autism really have no idea. It can look so mild and 'normal' from the outside.

I have 3 on the spectrum. My 8 yr old is much like your dd. His tantrums aren't as extreme, and he doesn't always hold it together at school. And even with a confirmed diagnosis of Asperger's and an abnormal EEG, the school still contributes his lack of social skills to being homeschooled in kindergarten and first grade. *sigh*

[Frances]

Girlfriend, you are the bravest, most patient, loving, caring, and calmest person I know. Everybody has their days and you have had plenty Of difficult ones. You shouldn't have to explain yourself to ANYONE. If people stare, its because of their ignorance. You keep going and walk with your head held high. I Love ya!!!!!

[Carmen Staicer]

Thanks so much. That was really nice to hear - I promise I wasnt soliciting compliments - just merely venting.

Carmen

[Valerie]

My best friend's daughter has autism. We were just talking this weekend how demoralizing it sometimes feels to her, knowing the extra bit of uphill struggle this child is. Love? yes. Easy? No.