Thursday, 1 January 2015

Let's Be Honest: Life With An Autistic Child

This is going to be a tough one and if most of it comes off as negative - it's because I'm being honest.
Of course there are pros and cons to everything in life and this is just a closer glimpse into our lives with an autistic child.

For those new to my blog - welcome! :)
I'm an almost hitting my 30's mom of 3 children and one (V-Man) has nonverbal autism and mental retardation.  He's 5, very strong, extremely determined, kind of funny and is fearless.  Unless needles are involved.

* I'll use the term "they" - mostly basing my list on personal experiences with V-Man but every child can be different.
So here we go!
Things like this just don't bother us anymore.
  • As a neworn - V-Man seemed like a neuro-typical child (aka "average", "normal").
  • In retrospect, little things like visiting, travelling, being held by someone else, trying a bottle of pumped milk or a soother were absolutely horrific for him.  Teething was a nightmare.
  • It's shocking when they are diagnosed but at the same time a huge relief.  The younger the better!
    • It's not the end of the world - it's autism.  It can always be much worse.
    • But yes it still totally sucks and YES, OF COURSE if there was some magic cure - I'd go for it.  To be able to hear him speak his mind, hear how his voice would sound, have a conversation with him - have him tell me he loves me (or heck - even if he hated my guts to Hell and back for whatever reason) - just to hear his voice and not have to guess what he wants, change his diapers or explain his "weird actions" (i.e. hands flapping, random shouts and running away or feeling up strangers)'d be a route I'd take.
    • This may hit some nerves - but no amount of praying and hoping will make the autism go away.  If possible - get your child into therapy, get help for around the home or with your other children, get prescription meds to keep your sanity going smoothly...
      Because if it were truly that easy - praying and hoping for a change - nobody would be autistic (or at least for not very long!).
      • I don't mean to knock ANY religion.  Just stating that there are other productive measures to help your child (i.e. therapy, counselling etc.) and yourself.
  • He goes to speech and occupational therapy - with limited sessions a year.  This is thankfully covered by Kela (Finnish social services) and I know we're super lucky.
  • I worry that trying to teach him things - like cooking - may either be a useless effort or he'll genuinely not be overly interested.  
    • I do teach A-Man to cook a bit - and he's younger and it's something that separates the two of them from fighting each other perhaps I'm "living my 1st child's childhood through my 2nd"?
  • There are pros to him not being able to speak, as much as there are cons.
    • He doesn't ask for toys, video games, clothing brands or anything really (exception being food).
    • But because he doesn't speak - when he does want something - there's no budging him.
  • He was a picky eater up until 2 years ago, when he started at a new day-care that caters to special needs children and learned how to at least try new food.  Prior to this, his diet was mostly:
    • Bananas - only Chiquita brand.  Yep - by taste and then by feel - he could tell the difference in brands.
    • Junk food.
    • Yoghurt.
    • Grilli 21 burgers in Finland.
    • Crackers.
  • He's still not potty-trained but we're working on it.
  • We don't decorate a lot during any holiday or even birthdays because if it can get torn down by me - it'll get torn down by him first.
    • This is the first year I put up a 12-inches tall Christmas tree and by 10am, we had put it on a shelf that's impossible for him to reach currently.  And there weren't any lights - just in case he chomped on them.
  • It's worth mentioning again - he's obsessed with the same DVDs to the point that we've bought them a second or even third time because he's watched them so much they wore out!
    • Madagascar and #2 (#3 isn't such a huge favourite)
    • Shrek 1-4
    • Cars
    • Sesame Street
    • Teletubbies (Perhaps because their facial expressions don't change much.  I heard this is common and  Thomas the Engine is also a popular one for the same reason.)
    • Fröbelin Palikat - a Finnish children's band from the 80's/90's and are still performing, touring and making new music!
  • We repeat ourselves a lot (i.e. "No don't do that!") and this repetition only creates a comfort for him.
  • For a couple years - getting him dressed and getting him to keep clothing on was extremely difficult.  Now it's gotten easier.
  • He doesn't like waiting in lines.  So I try not to bring him to stores when it's busy and we can't stand anywhere for a long period of time either.
  • I can only dream that some day he and I can go to a "fancier" restaurant than McDonald's, Hesburger or a not-so-healthy all you can eat pizza buffet.
    • I try to take him for weekly "Mommy and me" dates - where we go for lunch and I can usually get to 3 shops without him freaking out too much.
    • We'll probably never be able to take him to a movie theater - no matter how awesome the child's movie is.
  • It's hard to find a baby-sitter that can handle the V-Man.  He's exhausting to watch!  I mean - just sit there and watch him go, go go - makes my eyeballs hurt.
    • Take advantage of any babysitting offer you can!! Your date needn't be super expensive or extravagant - a walk in the park, yoga in the basement, a trip to the grocery store...go for it!
  • There's no point in cleaning when he's around.  Everything gets un-done immediately or some other trouble is concocted! 
    • V-Man loves taking down laundry...the wetter and freshly washed - the better.
  • GET HELP IF YOU NEED IT.  Don't be ashamed or embarrassed.  You're not the first and you're certainly not the last parent to have an autistic child.
  • He has a ridiculously amazing sense of balance (see photo above).
  • Every autistic child (and neuro-typical child) has a special talent.  Some are math whizzes, some are artists and can draw things from memory, some can recite lines from seasons of shows and remember laws.  
    • My child seems to be the next Spiderman, super strength and part-time escape artist.
  • If we're invited to a party and it's outdoors or has access to outdoors - V-Man usually stays home unless it's completely fenced in.  He's very talented at escaping.
  • It's nearly impossible to NOT make exceptions for the autistic child in your family.
    • Of course they should follow the house rules but if they don't understand them - you tend to bend them a bit (within reason) and naturally.  At least we do.
  • Date nights are few and far between.  You get creative and do more stuff at home - or you're super lucky and have family and friends nearby that can handle your autistic child.  Not our we do try to make it out when he's at overnight care.
    • The SH and I have taken turns going to a movie - because we both badly wanted to see it...
  • You tend to not get invited to as many things because the host(ess) remembers the last time they invited you - there was a scream fest when the autistic child woke up in an un-familiar environment.  
    • Don't be surprised or offended.  You'll get used to finding out about so-and-so's birthday party after the fact and being asked why you didn't go (of course not from the host(ess)).
      • If they're not used to having an autistic child/person around - they're quite clueless as to how to make your family comfortable and would rather just not ruin the party for everyone else.  Also they don't want you to feel un-comfortable either!
  • It is really and truly difficult to think of positive things about your autistic child when you're exhausted beyond measure and are trying to not kill your child.  I'm going to try saying to myself, "What can I do to make this BETTER calmly..." instead of "What am I going to do (with him)?!"
    • Yes, this is also why I try to write these semi-motivational posts for all you other Autism-Parent warriors!  And yes, I do re-read these to give myself some HOO-RA to keep going...
  • Things I, as a parent of an autistic child, constantly stress about:
    • Moving - it takes him about 2 weeks to get settled into a new home.
      • Moving out of country just depresses me.  But if SH gets a permanent job offer - we have to go...although Finland is all that V-Man knows.  And the care for him is top notch.
    • Travelling - we rarely do it because he needs to be in his familiar surroundings.
    • Bullying - yes it happens and it happens now (although lightly).  People staring and pointing and whispering at us when he eats with his hands and wipes the food face-down on the table first before putting it in his mouth or when he has a public meltdown.
    • Puberty - I follow Autism Daddy's blog who has a son that's much older than mine.  Puberty is just a whole other level of stress on its own.
      • Will he be aggressive?
      • Will he be horny?!
      • What do we do?!  (Yes he's only 5 - but still - it'll be here before we know it.)
    • Love - I worry he'll never find someone to love and care for him and he'll be very lonely.
      • I don't care if it's a man or a woman - I just want him to be happy.
      • And on the off-chance he does have children - how will he help to care for the baby??  (This is just a random thought - not something I stress a lot about.)
    • Death - How the Hell do you explain why the dog is gone and not coming back or your parents and you're stuck in a big and terrifying world all alone?
      • Or someone hurting/killing him because they don't realize he's not able to defend himself happens ALL the time in the USA.  Sorry dear Americans - we won't be moving there anytime ever.
      • I truly hope if he doesn't find someone - that his siblings will watch over him and help him in every way.
    • Development - Will he be able to:
      • live semi-independently?
        • Cook
        • Clean up after himself
        • Shop for his basic necessities and groceries 
        • Able to ask for help or assistance?
      • Wash himself?
        • SHAVE?!
        • Get a hair cut at a barber shop (I do it at home currently - buzz cut is the easiest!)
      • Use money or a bank card? 
      • Know right from wrong on his own?
      • Write his own name
      • Walk a dog or be able to take care of a fish?
      • Discover his true talents?
    • His happiness 
      • Did we do everything possible to make him happy?  (I don't mean spoiling him rotten.)  I mean did we take him to exciting and new places?
      • Does he have some sort of wish that we can grant?
      • Is there something we've done that he extremely disliked?  (I.e. moved?  Didn't bring him somewhere?)
      • Did we teach him enough life skills?
  • He doesn't do/enjoy the following things:
    • Speak
    • Read or show an interest in books other than to destroy them or rotate them around.  Occasionally bites them.
    • Write
    • Use his imagination
    • Acknowledge babies - even his own siblings.  He mostly ignores our dogs too.  But I think they bring him comfort by being present everyday he comes home.
    • Travelling is very rare and we have to be extra prepared with WI-FI or a good internet connection for his Youtube favourites or bring DVDs.  The key is that these are things that don't change regardless of what country we travel to.
    • Play with toys like the way they're meant to be.  Example:  everything gets sniffed and takes a trip between his lips and teeth.
    • Play with others - except organized games with a therapist and it's only one adult and him.  And it's random when he wants to change the "game".
    • Socialize
    • Wash himself or his hair
    • Wash his hands on his own
    • Recognize danger and will run out into the roads.  That's why he wears a harness.
    • Butter his own bread
    • Fill a cup with water or juice
    • Use a fork, spoon or knife really well.  (We haven't tried the knife yet but are fully prepared with plastic Ikea butter knives from the kids' section.)
    • Sleep (I'll write a separate post about melatonin later.)
    • Take a nap
    • Do well in a hospital or health clinic setting.
    • Sit still.
    • Have his own friends to call his own.  Most are a mix of my other two children's friends that greet him.  Of course there are children we've known and introduced to him when they were younger - and keep in semi-regular contact with.  But they don't know how to play with him and that's not their fault.  Nor is it easy to explain!
Inspecting the fried rice being made awhile ago. 

  •  Things he seems to be good at (or enjoys):
    • Pooping at home - like non-stop.
    • Not pooping in public in his diapers...
    • Eating - again - non-stop.  You have seen the evidence!  Hiding food is nearly impossible now.
      • Asking for food by climbing or bringing one of us to the kitchen and guiding our arms into the direction of what he wants.
    • Jumping
    • Not feeling pain...he's only ever cried 2-minutes tops at anything...even when he knocked over a massive old-fashioned television and twisted his knee cap...nope.  2-minutes.
    • Taking the bus - as long as the wait for the bus isn't long.
    • Holding hands - this is fairly new.
    • Trying new food! - also very new.
    • Climbing.
    • Defending himself - sounds silly but A-Man has become a bully almost overnight and V-Man IS the oldest and has been fighting back.
    • Using PECS (picture exchange communication system) - this is more at day-care because he doesn't have access to everything all the time (i.e. food).
    • Using objects to communicate what he wants (i.e. a plate for food).
    • Helping to get dressed.  He won't do it himself but he can guide his arms into the sleeves and is much more patient with waiting while we get the other kids dressed.
    • Swimming
    • Cuddling
    • Ripping up cardboard boxes
    • Indoor gym activities 
    • Smelling spice jars before I put them in the pan (see photo above where he's trying to sneak food out of the wok...)

Barefoot and in a large fenced-in playground.
Summer 2014
(He doesn't seem to enjoy the playground this autumn/winter!)
Running around this large playground - we still have to watch him because he will take other people's food...

Keep your chin up.  Be strong.  
A friend once told me he thinks that I was "chosen" to have V-Man because the big guy above thinks I can handle it.
I totally fucking can't and if there IS a big guy upstairs - you're NUTS! - but I'm going to try my hardest.  It may take a lot of extra pounds (I'm a stress eater), Pepsi (not a coffee lover) and patience...but we DO celebrate his birthday (just us parents) - because it's another year we didn't kill each other. survived and lived to tell the tale.

True story.

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