Trials and Tribulations

People whine about how hard it is to have an autistic child, or any kind of exceptional child. All too often there are terrible news reports about parents who have killed their handicapped or autistic children because they were such a horrid burden. Even more horrifying is when the press perspective or quotes are full of sympathy for the murderer because killing your own child is “understandable” because a person can’t help but be insanely stressed from dealing with the child’s abnormality. Excuse me; that should be the alleged murderers; trials haven’t happened yet for several of these cases.

Holy shit! Parenting is hard. Period. Yeah, there are bad days. Some days you feel like you’ll never get to eat your food at the proper temperature, or go potty or take a shower uninterrupted, or sleep through the night. Some days you feel like you’ll never finish the endless assessments, or learning more about the alphabet soup of ADHD, APD, ASD, TS, DSM, IEP, or attending special school meetings. Some days you feel like you’ll never get through the little chats with the police officer on your doorstep, or the hormonal teenager angst, or the getting homework done and turned in so the grades reflect a little of the smarts behind the scholastic ennui.

Amazingly, this is true regardless of what sorts of kids you end up with.

It’s true that there are some problems with autistic children that one doesn’t have as often with neurotypical children. There are also problems with NT children that one doesn’t often have with ASD children (when was the last time you read a blog by a parent sighing over how their autistic kid wanted to invite two dozen kids for a birthday party at Chuckie Cheez followed by a sleepover?) Different is not worse.

Aspie kid was a “runner” as a toddler. With my faceblindness I have great difficulty finding people in crowds; tracking down a small child that has bolted into the mobs of people at a mall would have been dangerously slow. Thankfully my other kid was four years older and could help me. I ended up having the tot in one of those child-harness & leash setups when we went shopping. People would give me dirty looks because I was a “horrid mommy who put their kid on a leash”. Frankly, I was a concerned mommy who wanted to keep her kid safe, because this child was fast, strong and inclined to dash off when intrigued by something.

There were also meltdowns, which being unaware of autism at the time, were to me simply “being too tired” and/or “having a tantrum”. So I ended up figuring out what the triggers usually were, and finding ways of circumventing those. We also learned how to calm down, and how to recognise when things were starting to get to be Too Much. I also learned the fine art of calmly saying, “Having a temper tantrum is not going to make me change my mind. When you calm down, then we will shop some more.” (I used a lot of If-Then and When-Then constructs when dealing with my toddlers; they could understand the binary constructs, and it helped them make sense of cause and effect.) Of course, passers-by would want to intervene and try to comfort/appease the child or chastise me for having a crying, floor-kicking kid on the grocery aisle floor. I also acquired the other fine art of smiling, nodding, and reassuring them, “It’ll be okay in a minute or two.”

This child also had/has distinct clothing and food preferences. Some relatives called this “picky”. I thought of it as merely having … preferences. I like my clothes or my food a certain way; why wouldn’t anyone else?

Sure everything was all about orcas when younger. Sure made gift-giving easy. Now it’s videogames (shocking, I know). Sure makes gift-giving easy. (Unlike dad, who has neither perseverations nor any particular hobbies; is that just so weird, or what?!)

Different is not worse. It’s just different. Rearing children is going to do major things to your daily life structure, your bank account, your living room furniture, your social life, and so on. That’s real life. Whining because your life isn’t going the way you thought it was going to, or like some kind of posed ideal family scenario from a greeting card, is simply whining.

Meanwhile, learn how to have fun with your children. Figure out how they learn, as unique individuals. Experience how they share their thoughts and feelings, as unique individuals. Take photographs, collect stories about funny family moments, and build up that group identity of “this is the sort of stuff that makes our family because we’re all part of it”.

DON’T EVER wait until “things get back to normal” or “when this is all over” to do anything. There is no “normal”. This is it. This is life. Fun is something you make, not something that happens to you. Families is who you are, not something you wish would be. Love each other, live it, enjoy it.

(And bake cookies, because cold milk and warm cookies with your fingerprints pressed into the tops are great family-glue.)

14 Comments

  1. qw88nb88 said,

    19 July 2008 at 21:54

    P.S. I fixed the broken link in the first paragraph.
    andrea

  2. qw88nb88 said,

    19 July 2008 at 21:46

    Rochelle,

    Everyone’s parenting challenges are different. The purpose of this post is not to stage a game of one-upman-ship in a contest for “my life is worse”, or to dismiss others’ problems. We all have a variety of different problems to deal with over the years, and I do not feel the need to shred my family’s privacy to describe all the things that I must deal with.

    You will get absolutely no arguments from me on the difficulties you face. I do not literally know what your life is like, aside from stressed and probably chronically sleep-deprived. Yes, I agree that dealing with a ‘7 year old “toddler” ‘ is VERY difficult. So is dealing with several of them at the same time, which I have also done, so I feel that I have some concept of the terrified, frustrated exhaustion you probably feel on a regular basis.

    I also know that all parents, especially those with exceptional children, need to be able to “vent” at times, and sometimes only other parents who face similar difficulties will really understand what all those problems really are like. (The very words, “IEP meeting” are enough to make the stomach curdle.)

    Rather, the real purpose of this post is to point out that despite these things, we also LOVE our children dearly. Much of the pain we feel is from wanting things to improve, and we work hard to help them get the things they need to reach those goals. Despite all the difficulties, our children are also sources of joy and fun, and the accomplishments they make are no less important.

    But we do NOT act like having our children is some horrible mistake of nature, or that they are broken, evil, soulless beings.
    We do not act like somehow we “deserve” to have different children.
    We do not act like our exceptional children (unlike their siblings) are a terrible imposition on our lives.
    We do not go around telling everyone that we would be better off if they were dead.
    We do not go around describing how we have considered killing them.
    We do not discuss just how we could kill our children, and prattle on as though that were the most natural, and understandable, and acceptable thing to do!

    People who feel and talk and behave in these ways, and yes — follow through and murder their children — have horrifying, serious mental problems. They should not be filmed and included in “public awareness” propaganda, and lauded on message boards, and sympathised with on blogs.

    This is the kind of terrifying problem I have complaint with. My apologies if that was not sufficiently clear in the first paragraph.

    andrea

  3. Rochelle said,

    18 July 2008 at 11:42

    You obviously have no idea what raising an autistic child means. By the way, I have both a “typical” child and an autistic child, so I completely get both sides of the coin. I have a 7 year old “toddler” who has the physical ability to get into much larger trouble much faster, yet the judgment of a baby — i.e. NONE. He requires 100% of an adult’s attention all day and often most of the night. So don’t tell me that having 14 kids at Chuckee Cheese’s is too hard for you. I’ve done both. At the end of the day, none of those 14 kids is ever going to decide that what they really want to do — and will do unless you can physically prevent them full-time — is to run into the street to see the shiny thing that caught their attention. Shame on you.

  4. deb said,

    23 February 2008 at 13:28

    Hiya im Deb mum of 3 one being autistic and a few more things i think its a great blog please visit my site our special kids

  5. Grace said,

    9 August 2007 at 11:19

    My mom is now raising one of her husband’s granddaughters and is finding out just how hard/different it is raising an extrovert! From a very young age, I was quiet and able to entertain myself for hours on end (and preferred to) and she got very used to that. Now she has a chattery outgoing teen in the house and is finding it exhausting.

  6. qw88nb88 said,

    14 October 2006 at 21:27

    Aspie kid just took a notion to bake a batch of chocolate chip cookies as a solo venture. Boy do cookies taste especially good when someone else makes them! Family-glue, indeed.

  7. Nadine said,

    14 October 2006 at 20:46

    I love this post, especially the part about baking cookies! Don’t know why it has taken me so long to have a look at your collection. Thanks for sharing!

  8. qw88nb88 said,

    29 August 2006 at 14:37

    most autistic children have some special interest … one thing might be a small but good electronic keyboard if he likes music?

  9. Uncle Billy said,

    29 August 2006 at 14:18

    I found your blog after about an hour of reading about autism on the net. Truthfully, the surfing started as a means of seeking out ideas for birthday presents for my autistic nephew, but I was drawn in by the various web sites that explain (in thankfully layman terms) what autism is all about and how to best support parents with atypical children. While every parent’s journey is a different (with or without autistic children!) I am most respectful of your thoughts on your own.

    To the quest that led me here, do you or your readers *have* any thoughts of what birthday presents would be appropriate for a 7 year old autistic child? I read on one of the sites that a toy is not a good idea as it may be broken or ignored (not that either would offend me… I just want to be helpful and practical but also try to make his birthday special). I am leaning towards a nice sweatshirt for the cool and rainy season coming at us.

    While I lack the experience and exposure to appropriately describe my nephew, it may be helpful to note that he speaks (whispers) the odd word, is drawn in by music (he’s my biggest fan when I play for him on the piano!), and seems to understand most spoken instruction and communication.

    Thoughts?

  10. qw88nb88 said,

    5 August 2006 at 15:25

    You might want to read this page, if you’ve not already.
    https://qw88nb88.wordpress.com/im-strange-youre-a-stranger-prosopagnosia/

    Googling “prosopagnosia” will get you a host of other useful sites as well.
    Cheers!

  11. Rashna said,

    5 August 2006 at 14:27

    Face blind ! Thats me .I did not know such a thing existed. everyone thinks that I have a problem with my eyes . I have always told my friends I cannot remember faces I can recognise them by their walk or their clothes. I’ve been involved in so many funny(??) situations because I have had cases of mistaken identity. Now I know why!

  12. qw88nb88 said,

    24 July 2006 at 18:40

    Sharon, thank you for posting!

    Everyone has preferences. The relatives just thought he should have different preferences than the ones he does. This does not make much sense to me. My rules for the children dressing themselves was that the clothes must be:

    Sufficiently modest
    Clean
    Appropriate to the weather
    Not contain offensive messages.

    Otherwise, they can wear whatever they want. For a few years of gradeschool the NT child wore socks of different colors. Unusual, but that was a personal style thing. If our son decides one day that he wants to wear a kilt to school, I’d support that, too (although I’d recommend he continue to wear his boxers while at school to reduce the potential hassel-factor from others).

  13. Sharon said,

    24 July 2006 at 15:05

    I really like this post (but then I like all your posts!)
    This line describes my son well;
    ‘Some relatives called this “picky”. I thought of it as merely having … preferences.’

    I’ve been thinking about this issue too recently. I upset some people on a list I’m on when I played down the awful burden of parenting a autistic child.

  14. 15 July 2006 at 18:46

    when was the last time you read a blog by a parent sighing over how their autistic kid wanted to invite two dozen kids for a birthday party at Chuckie Cheez followed by a sleepover?

    Very good point. I’m still recovering from my daughter’s 14th birthday party at our house this afternoon, to which she invited just about everyone she knew (about 50 kids showed up) in what I think was a deliberate plan to collect hundreds of dollars in loot from people who were too lazy to buy birthday presents and gave her money instead. My husband, being the good dad that he is, bought an enormous cake at Sam’s Club and cheerfully grilled a gazillion cheeseburgers.

    There are still a half-dozen kids in the basement watching scary movies, but it’s quiet enough for me to think again.


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