Learning to Embrace the Darkness

Admittedly I'm very impressed with myself for coming up with that title.  It will probably be the best part of the post!

I've been trying very hard lately to create a better relationship with the Prince of Darkness (the 8 year old).  This guy can be so hard to deal with, and is extremely self-centered.  If I say, "The world doesn't revolve around  you!" he will immediately come back with, "Yes it does!".  I have also gotten, "I command you!" and "I'm the king of this world!"  The Pod is a total control freak.  He always has been.  And it's root is anxiety.

For several years now I've found it nearly impossible to connect with the PoD.  Everything was a fight, a battle of wills, and boy, does this kid have a will.  He dominates his brothers (which is kind of funny, considering how small he is and how big Buddy is).  One time he made me cry, than he laughed at me and called me a crybaby. I've often thought that he didn't have a conscience.  He fights with me about things that aren't real.  We fought for months because he wanted me to peel his skin off so he could be a skeleton.  Really fought!  We've also argued about how horrible I am because I won't get him a time machine, or because I won't drop him off at the mountains so he can go climbing.  Things like this just really wear me down.  On the flip side, he can also be super hyper, and crazy insane silly.  There are two different boys in one tiny body, and they both drive me bananas.

Anyway, lately I've been trying to break down my issues with him.  I try to remember to praise him like crazy for the tiniest bits of positive behaviour.  I give him lots of hugs and kisses (when he'll let me).  I try to organize things so that he can be first (or at least have his choice of being first) for homeworks and bedtime (gotta be number one, right?).  I've also been trying hard to feed into his Star Wars fascination.  Budgets have been tightened to allow for rewards and posters and such to keep him happy.  I keep him a steady supply of food to keep his mood and blood sugar up (he's super weird about food.  He lives on garlic bread (with the crust peeled off), milk, and nutella on toast.  Sometimes he'll eat a strawberry or a grilled burger.  And popsicles.  I'm obsessed with his laxative meds (he gets super bad when he's constipated, but who wouldn't?).

It does help.  He does have a deep need for security and reassurance.  Inside the raving son of satan that he can be, he's a fragile little boy.  It doesn't hurt that he's as cute as sin!

This is my life?

So, here I am.  Three boys with autism, a husband, and living thousands of miles from home.  If I had made a list of things least likely to happen, it's happened.  I never even wanted to move away from my hometown!  We have no family around, and my husband works a lot.  I'm in the driver's seat guiding these bizarre little men through life.  I worry about pooping, talking, and eating. I don't know why I've been gifted with these boys.  I can barely manage myself most days. I need anti-anxiety meds just to make it through a normal day.  I obviously have lessons to learn.  Everything happens for a reason.

As it happens, it's been a blessing that we moved to the UK.  They get so much help here through the health service, and their school is just amazing.  I also have a great network of other aut moms, and they really make all the difference.

We've certainly learned to value the little things (two quiet hours to watch a movie for example).  Time for romance is at a premium.  By the time we both land in bed, one of us is usually asleep, or Buddy will pop in for a cuddle.  I spend more time in his bed than I do in my own.  Melatonin has been my salvation.  Everyone gets one or two tabs crushed in their milk, and voila! happy sleepy time.  All the boys get a cuddle to sleep from me: it's usually the best time of the day.

Now feeding time is more difficult.  Normally, it's one meal for me and hubby, and one each for the rest of the boys.  The Prince of Darkness eats about, well, not much.  He'll eat nutella on toast, sometimes egg whites, sometimes beans and toast (rarely), sometimes sausages, pizza with no cheese (if it's from the store), and milk. Apart from ice cream and sweets that's about it.  It's completely aggravating.  Buddy will eat just about anything, including hot spicy stuff.  Tomatoes are a no-no (although he'll eat salsa, go figure).  Bear is somewhere in the middle.  He'll eat peanut butter out of the jar, pasta, pizza, bacon, ham and so on.  Last night I made hamburgers on the George Foreman, and it was the first time in months that I had made one meal that everyone ate.

And then there's the clothes issue.  The POD is the worst again here.  Almost impossible to find things for him to wear.  It has to look, feel, smell right.  Has to be the right color, and fit whatever weird prerequisites he has in his head.  Who knows.  He's got maybe two shirts he'll wear, but only if he's going out.  At home he's topless.  He likes wearing blankets.  Buddy will wear about anything (but has problems with socks).  And he puts some weird outfits together.  My little Bear is pretty good, but has a thing about blue hoodies.  Loves em.  Once I get him dressed, he doesn't like to take his shirts off.  Goes pantless a lot.

And bathing.  Buddy with have a tub or a shower everyday (which is good, since he's getting towards puberty and is getting body odor).  The POD is currently on strike.  This doesn't help his eczema at all.  And his finger nails are hairy scary.  And Bear is terrified of the tub.  I fill the tub up, grab him, stand him up in the water and do a fast scrub and dump while I hold him still with one hand.  And he screams.  I'm really not sure how to handle this one.

At least I don't know any different.  This is all normal to me.  And I always said I wanted eccentric kids.  Ha.  Be careful what you wish for!

My number Three, My pookie bear

So, now to introduce boy number 3.  I usually call him pookie bear, but we'll go with Bear for short, or until I come up with something better!  Little Bear is 4 years old, and was diagnosed with autism three weeks ago.  Now, this really came as a surprise.  I thought we'd dodged the bullet this time.  Obviously, he's higher functioning than the other two boys, hence my surprise!  I knew he had a speech problem (he still talks like he's two) and I was prepared for some speech therapy.  Once he started playgroup in the autumn in became apparent that there were some other problems.  He wasn't playing with the other children very much, and he was often found staring off into space.  He also tends to use a sing-song voice.


The issues we've identified at home were things like he constantly rubs one of my moles for comfort (he's done this since he was a baby), he's afraid of the inside of his pillow (the pillow itself, if it pokes out of the case), he's terrified of the bath, he won't let me change his sheet or duvet cover, and he likes to act out the movie he's watching.  


Now, Daddy and I are a bit eccentric ourselves, so things like this don't necessarily stand out.  We're prepared for a bit of strangeness!  More to come on that later....


We are still in the very early stages of finding out what this diagnosis will mean for him, and what steps we'll have to put in place.  Again, school is extremely helpful, and they're already developing an IEP for him.  He's on a waiting list for speech therapy with an autism expert and social skills groups.  And, as with the others, I need to develop some visuals for him.  My Bear is such a lovely wee guy.  He's a cuddler and a giggler and just cute as hell.  Bear has his moments of course, but what kid doesn't?  And any tantrum he pulls just cannot equal The Prince of Darkness!


There you have it, the basic introduction for my three boys.  You'll learn more about them as we go, and I'll give you a bit of detail about Daddy and me next time.  

The Prince of Darkness

Now, Child number 2, or as we like to call him, The Prince of Darkness (pod).  This small 8 year old is a bundle of terror.  Pod has a lot of sensory issues (sound, taste, texture, touch, smell, and occasionally will cry when he hears sad music).  It's nearly impossible to feed him (he survives on Nutella on toast), dress him, bath him, cut his nails (which are looooong), brush his teeth, and so on.  His major issue is control.  He loves to control, to manipulate, and to cause outbursts.  This is a manifestation of his anxieties.  He feels better when he feels in control.  It makes life hell.  As far as school goes, well, thank heavens for his assistant.  This lovely woman has a lot on her plate.  She spends all day trying to get him to do stuff, and he tries to weasel out of it. She deserves a medal.

Pod was diagnosed with autism/asperger's when he was 4.  I was quite surprised when it came up as a concern since he was doing so much better than his brother in most aspects.  He certainly communicated a lot better.  I did worry that he was obsessive/compulsive maybe.  At that point, he still work zip-up jammies nearly 24/7.  He would literally change in the car after school.  And he always color coordinated his pacifiers with his clothes (he had a pacifier until he was 7).  Pod was always a strong-willed child.  From day one.  He didn't like being breastfed, but was over the moon when we gave him a bottle.  He wouldn't let me spoon feed him, and went straight to finger foods.  You couldn't cuddle him, but he'd come and cuddle in himself.  It all had to be under his control.  Rigidity was the word they used when it came time for assessment, and it made sense then.  He also had a lot of toileting issues.  Poopy pants, all the time, and not a care in the world about it.

So, we had a young fellow who wouldn't eat (much), wore jammies all the time, used a pacifier all the time, was poopy, and generally looking for a way to escape the house.  I once caught him 6 feet up the wire fence out back, completely naked.  With a pacifier.  He has no fear, no common sense.  We lock all the doors and windows.  Always.  And he had to control everything, or at least think he did.  He often couldn't sleep until he felt he'd manipulated me in some way.  Even if it was just to get me to close and then open the door.

Last winter we had a real scare.  We thought Pod had a stomach bug, but just wasn't getting better.  Turns out he had a bowel obstruction.  So, emergency surgery and a week in hospital.  Now, we have to constantly fill him up with stool softeners, and occasionally give him stimulants laxatives.  When all else fails, an enema.  I have to be obsessed with how often he's pooping.  At least the poopy pants have stopped.  He's happy to go as long as it's easy.

Young Pod, with his will of steel, is in school, happily chasing girls, and boys that he thinks are funny.  He refuses to go outside (too cold), play gym (too loud), and tries as hard as he can to get out of writing.  He's super smart (especially when it comes to working people).   He loves pushing his older brother Buddy into a total meltdown.  You'd think a tiny guy like PoD would get tired of being punched by a monster like his big brother, but there you go.  It's too much fun to get the reaction.  He does the same to me (except I don't punch him, of course).  He drives me to drink, not to violence.  But he loves pissing me off.  Once he made me cry, than he laughed at me and called me a crybaby.  Really.  My son.  He screams, he yells, he asks for things he doesn't want, just to make me get something for him.

I know I need to put a strict visual schedule into place, and make up some reward charts.  He needs a firm framework for his day to make him feel more secure.  I'm working on it, I'm working on it.  You try and make satan comply.

All names have been changed to protect the "innocent."

My oldest son, we call him Buddy, is nine years old.  And he's nearly as tall as me.  He's about 4'10", and I'm 5".  Buddy is just full of love and hugginess.  Sometimes we call him the big cat, because he loves to bump his head on us, and rub.  Our Buddy has come a long way in the last few years.  He turned five just days after we moved to Northern Ireland.  At this point he was very immature, and his verbal skills were just horrible.  He could use lots and lots of words, but rarely in a sentence, and never to give a proper answer to a question.  If you asked him a question, he'd just answer back with whatever was in his head at the time (trains, trucks, cars).  He was absolutely brilliant though.  He knew and could recognise all the letters by the time he was two, as well as being able to count to 20, and he knew all of his shapes and colours.  However, if he wanted to explain anything to you, I'd have to translate it for you because it just wouldn't make sense.  And the toileting issues!  Years and years of poopy underpants and tears.

Before we moved, we enrolled Buddy in a private preschool for a year, just to prepare him for school (I was sensing all was not quite right).  And he did have a hard time.  I could see the other kids were miles ahead of him socially and developmentally.  He got a lot of love and care at that school, and they gently pointed me to the idea that he may have autism.  After we moved, I contacted the local integrated primary school to see about enrolling him in P1, and to alert them to my concerns.  Now, this is where fate really put her hand in.  This school, while being a mainstream school, is one of the best schools for special needs children in Northern Ireland.  From the head mistress on down, all the teachers and staff have had lots of training and experience with autistic and other special needs children.  The magnitude of our luckiness is still overwhelming!  Buddy was welcomed with open arms, and has been given every help and assistance to succeed at school.  At first, it was very hard for him, frightening and overwhelming.  He often tried to escape school, or would lock himself into bathrooms and classrooms.  With help from the school, and from his clinical psychologist, we've gotten past those behaviours, as well as the toileting issues (hurray!)

We also had two to three years of aggression problems.  Buddy has beaten the bejeezus out of us a time or two.  When he becomes really upset, his verbal ability just crashes.  For awhile, we had a pop-up tent in his room that we would stick him in to keep him (and us) safe until he calmed down.  Fortunately, this has really dropped off lately.  He still has him moments, but they are a lot easier to deal with, and much less often.

Now, Buddy is in P5 with a full time classroom assistant (who loves him).  His maths skills are great.  He has some trouble with reading.  He doesn't seem to process all of the words on the page, and he doesn't seem to be aware when he reads something the wrong way.  He plays floor hockey and gaelic football after school.  He loves dodgeball and has some friends.  He does still have trouble understanding social situations, and can misinterpret rough play as meanness.  His attention span is poor, and he needs his tasks broken down into small steps.  Buddy has come so far since he started school.  We can have little chats sometimes, although I think he finds it hard work, and tiring.  He can be a bit rough with his brothers, and often doesn't understand that they're smaller and weaker than he is.  He just gets carried away sometimes, and can't calm himself.  And he's still a thumb-sucker, and goes to sleep with a big cuddle from me every night, while he twirls my hair.  Nearly every night he makes an appearance in our room, looking for company (this is why we bought the HUGE bed).  But, he loves his cuddles, and he loves his mama.  My Buddy is just a lovely guy.  He may not ever be able to live independently, but he'll take care of me.

An Introduction

To serve as an introduction to me and mine; I am an American woman, living in Northern Ireland, and married to a British/Irish man.  We have three boys between the ages of 9 and 4.  All three have high functioning autism.    Our youngest was diagnosed just last week.  The boys all attend an amazing mainstream integrated primary school in County Down.

My intention for this blog is to not only be an outlet for the daily stresses of the house of autism, but hopefully to help other parents along the way.  I will be discussing regular strategies, as well as services available in Northern Ireland and County Down.

My next few blog posts (hopefully) will be a more specific introduction to each boy, all with their own unique way of interacting with the world and each other.  Buckle up!