The Fixation Station

When a show we don't like comes on the TV, we change the channel. Problem solved in seconds, purely on the whim of our desire.

Have you ever wished that your child on the spectrum becomes stuck on a fixation, that you could change the channel as easily as with the TV? Over the years, we have had many fixations go through our home. Everything from spinning or lining up objects to each child discovering a topic of interest they loved and sticking to it tighter than super glue.

For approximately ten years, for three of my children, I could by Christmas, Birthday, etc gifts months and months in advance, knowing that their interest wouldn't change. It was irritating at times, always needing to buy the same kinds of things, but more than anything, it made life ever so easy. I was grateful for this one area that wasn't a struggle. It was a given for the longest time as to what themes would do for each child and I would have Christmas shopping started in january (when things were on sale) finished by June and wrapped by October.  It enabled Christmas to be one less stress, and more cheaply dealt with.

Some of the longest fixations in our home have been:

My Little Pony - Miss A for 10.5yrs
Star Wars - B-Man for 11yrs, then followed by Monkey Man for 5yrs (he's still somewhat in that phase)
The Littlest Pet Shop - JJ for 5yrs
Thomas The Tank Engine B-man for 7yrs  and Monkey Man for 5yrs. They're both past the actual "Thomas" stage, but both are still mad train fanatics.
Tellietubbies - B-man for 5yrs.  Amazingly, Tellietubbies are why B-man learned to talk... but that's a whole 'nother post.
Harry Potter - CB for 12yrs... this one is still ongoing, and she is completely obsessed. Miss A, JJ and Monkey Man are also  mad on Harry Potter, but nowhere near the extent CB is.

A current new fixation in our home is YuGiOh and other Anime shows.  The younger three are mad on it, but the girls in particular. They love it to the point, that I invested in some Science 'textbooks' written in the Anime style as I knew they would love them.  It's pretty awesome when your 13yo wants to study physics by choice because of the enjoyable style in which it is presented.  Another current one I'm sure *many* of you can relate to, is Minecraft.

One of the fixations that drove me insane for a while was the way B-man used to dress himself. It was definitely great once he learned how to do his clothes himself, but of course once he learned how, there was NO WAY ON EARTH he would let me do it for him.  It then became a major point of frustration because holy cow, the amount of time it took was insane.

B-man would start by picking out the shirt he wanted to wear.  He would then make sure the floor was clear in the room, and if it was, he would lay the shirt down on the floor. Every crease & wrinkle had to be smoothed out of it and the shirt had to lay completely straight.

Next he would choose his pants.  These had to be perfectly colour coordinated with his shirt, and would then also be laid out on the floor, perfectly flat and lined up directly below the shirt, with every wrinkle smoothed out. Socks were laid out and smoothed at the end of each pant leg, then shoes would be laid out below the socks.

He would then walk around the clothes a couple of times inspecting them, before sitting above the neck of the shirt and proceeding to put on each article of clothing in order.  If something was bumped out of order, moved by a sibling, etc... the shirt would go back on the floor, every wrinkle would be smoothed out again & he would begin the dressing process once more. It took FOREVER.  For him though, it was a comfort. He had a level of control over how it was done, and in being allowed to do it, he started each day on a slightly calmer note.

A lot of people have the view that "feeding the child's obsession" is a bad thing.  I see it differently. If your child has a fixation with something, it is obviously something that gives them a level of comfort and security in this world. Considering what a struggle it can be for some of our kids to adapt and cope with everything that goes on in society, how bewildering social "norms" are to them. How mixed up our language is when we say one thing yet mean something completely different.

I have kept an eye on how far these obsessions go, especially when the kids were younger, and I did not just give them everything they wanted.  I made conscious choices on what I did or did not buy them, how much time was allowed to be spent watching TV, playing computer games, etc.  But after a trip to the shopping centre where the bright lights, loud noises, colours, masses of people, etc was an overload to each of their senses, being able to come home and relax be it with Thomas trains, a Harry Potter book or movie, Star Wars lego or light sabres and so forth, gave my children the perfect avenue to be allowed some alone time to wind down, pull themselves back together, and find themselves again.

Was it always that easy to wind them down after an outing, simply by letting them have time with their toys of choice? Absolutely not.  Many were the days where nothing would work in calming them down. When we'd come home with not only them out of their trees from over stimulation, but myself also. While the kids were young, the mere task of heading out with 4 kids under 5 years old was exhausting in itself without adding in all the other challenges we faced.

Nowadays, it is much easier to take them all somewhere, but it can still be exhausting and quite the juggling act based on whose personality is clashing with whose on that particular day, who has or hasn't slept enough so may be on edge, is B-man having heart pain, has Monkey Man been toileted in order to avoid an accident, and so forth.  Other days it can be as simple as watching them climb in the car, head to our destination, do what we went for and come home... and those days, I count as true blessings and gifts for I treasure them.

Over time, I have also worked extremely hard at helping my kids learn that hey, if something doesn't go your way... it's OK. Here & there I made small changes to the way things were done, or the way their things were laid out. Not enough to set them off, but enough to help then gradually learn and come to understand that life isn't fixed. Things are unpredictable, they change and we need to be able to adapt and adjust to those changes.

One example is the charts I had for how to clean their bedrooms.  I made them using a combination of pictures and words. They started off laid out one way with directions in a certain order.  As the kids got the hang of doing things, gradually I weaned them off the charts.  Once they were cleaning their rooms more independently, I'd change the order in which they did things, by throwing different requests in such as bringing their dirty washing out at the start of cleaning instead of the end.

These days, while the kids each still have certain things they insist on being done certain ways, or obsessive interests, I'm seeing ways in which my efforts to teach them to be more flexible has been a huge benefit to all of us.  They no longer freak out if routines change, or if something unexpected happens at school. We still have routines, but we're not locked rigidly into doing certain things at certain times - although if 5.30 hits & dinner isn't done, Monkey Man is sure to ask me where it is - however most days he doesn't have a fit if I tell him it's not ready yet.

It's an ongoing task, continuing helping the kids learn new steps in relaxing, going with the flow, learning to stay calm. Keeping a balance between routine and switching things up is definitely the key.  The older ones are much better with it all than Monkey Man, but even he has improved in leaps and bounds over the last 12 months. It's awesome to see those lightbulb moments when things click and they learn a new concept, I love it. :)

~M~

Double the Challenge, Double the Fun

CB was 16 months old when B-man came along.  I was so excited to have another baby. Despite the struggles with CB, I still wanted the large family I had always dreamed of and I was excited to have a son.

In the hospital, the nurses would come by my room to check out what clothing he was wearing each day. I had known I was having a boy & so had made him a weeks worth of shorts with matching baseball caps. They were such adorable outfits & I loved having the opportunity to make boys clothes instead of only sewing girly stuff.

Unlike CB who took a huge 36hrs to be born, B-man was in quite the rush. 50 minutes of labour and he came into the world. However, just like CB, he was born with the cord wrapped firmly around his neck 3 times.  He was blue, not crying, and I was so scared of what I could see, but in a short time, thanks to the fabulous midwife, he was free of the cord, he started breathing & began to turn pink. What a relief!

Little did I know at this time that I was headed for a whole new level of learning with B-man. He was an incredibly strong babe. By 10 months of age, he had kicked out the bars in his cot - snapping them clean in half.  While he didn't cry around the clock as CB did, the massive tantrums that developed less than a year later, were beyond anything I'd ever seen.  His first ear infection hit at 2 weeks of age and this became a reoccurring theme for him.

For the first 3 years of his life, he developed an ear infection every second week. The ear infections were so bad that he was diagnosed with conductive deafness at 10 months of age. The audiologist told me his hearing was such that if I were to stick both thumbs in my ears as firmly as I could, the amount of sound left was all he had.  He could not distinguish one noise from another, it was all garble to him, and his frustration showed constantly. To make matters worse, the moments between infections brought a sudden, but temporary, clearing of his deafness which terrified B-man. He was unable to understand why things suddenly became so loud and it distressed him enormously.

B-man did not develop noises, babbling or speech as other children did. He lived in a world that swung between silence and hearing - spurning out of control, screaming tantrums. He did not know how to make his wishes known and, I had no clue when he could or couldn't hear me when I was speaking to him.

He would throw things, punching & kicking while screaming at the top of his lungs. As he grew, it became harder to calm him and I developed a method of sitting against the wall with my arms and legs wrapped around him firmly, but gently, in order to protect not only myself and his sister, but him from himself also. On Doctor's orders, I emptied his room of everything he owned except his bed. His bedroom became the "safe zone" for him when he was out of control. I would grapple with him while being kicked and punched to get him into the room and then would sit outside his bedroom door sobbing while he raged for 3-4 hours at a time.

I had no idea what was causing my child's behaviour. I couldn't understand why he was so difficult to help, to teach.  I went from Doctor to Doctor seeking help, trying to learn what I could do to help my child. However time and time again I was simply told I was a bad parent and needed parenting classes.

I attended more classes than I can begin to count. I tried everything I was taught, yet nothing helped.  It didn't take long for me to get to the point where I could virtually teach the classes myself, yet still Doctors refused to see there was anything wrong with my son and continued insisting I go to other classes.

Regardless of their refusal to believe me, I felt strongly something wasn't right with my son and I continued seeking answers.  Little did I know just how long that road would be. Years of struggle lay ahead, years of going head to head with Doctors and other specialists, years of knowing something was not right, and yet I was unable to get anyone to see what I could see in him.  I was determined though, to get him help and would not give up.

The Trouble With Control

Control... it’s something we all strive for. 

We don’t like being out of control or out of our comfort zones, yet raising a child (or children) with Autism, does exactly that.  It removes so many facets of control from your hands and leaves you waiting, on edge, not knowing where the next outburst will come from.

In the past I was always been a big time control freak. I still can be to a point, but gradually, step by step, I'm learning how and when to let go, how to pick my battles, and how to relax and 'go with the flow' of life.  Not so many years ago, if I were told I couldn’t do something, I’d do it just to prove the person wrong. I’m strong willed, stubborn to a fault and determined to “make things work” no matter what.  This has been my saving grace time and time again in allowing me to fight through things when it would have been far easier to give up, but in a lot of ways, this was also my undoing at times.

When B-Man was a toddler, there was no way of knowing what would or wouldn’t set him off in one of his meltdowns that would last for 4+ hours.  When I was at my most exhausted, I definitely made the mistake all too often of giving into his desires to avoid the out of control meltdown that would follow being told NO.  However, this in itself was an issue as it created more problems through not having taught my child that he couldn’t always have everything he wanted. Yet there were times in which it were vital to "give in" for safeties sake.  In those times it wasn't actually giving in, but life preserving for each of us.

B-man couldn't hear fully or speak until he was 3yo. This created quite the roller coaster of events on a daily basis.  I had no way of knowing he couldn't hear until he was diagnosed with conductive deafness at 2 years of age, so before that, it was all hit & miss & not being able to work out why on earth all my child did was either ignore me, refuse to learn to speak and throw massive out of control tantrums that lasted for anything from 2-4 hours.  Something as simple as him pushing a cup at me and grunting (the only sound he made) and me misinterpreting what he wanted in the cup could turn into all out world war 3.  His tantrums were horribly violent. Punching, kicking, biting, throwing and smashing things... anything & everything was on the cards in those times.

Once he got going, he was near impossible to grab and stop. Yes, it's easy to sit there and think 'but he was under two years old, how hard could it be, just pick the kid up'.  If I were in your place reading this, I'd probably think the same thing.  He may have been a tiny toddler, but we're talking about a boy who kicked out the bars in his cot at 10 months of age - snapping them clear in half. His strength was, and 16yrs on, still is incredible. I learned quickly that I had a very, very small window between that first banshee scream and the throwing of whatever was in his hands, and having a full scale hellish outbreak in my house.

I learned to grab his arms quickly by the wrists - firmly but gently.  I'd cross me arms over, spinning him around so he wasn't facing me, and sink to the floor - pulling him into my lap.  Once we were on the floor, I'd cross my legs over his, and this was the position we'd stay in for as long as it took him to calm down.  He would fight like you wouldn't believe, and head butts to my face/chin/shoulders/chest were common, but in this position we achieved two things. 1) He couldn't harm himself by throwing himself off things such as the kitchen bench, staircase, etc and 2) He couldn't harm his sister, myself or damage our belongings.

Time and time again, ignorant "specialists" sent me to parenting classes after having told me I was a terrible parent and had no idea how to control my child.  Time and time again, I attended those classes, hoping by some miracle I would learn *something* new that may be what clicked into place & saved my son and my sanity.  For 2.5yrs this cycle went on until one day a baby health nurse/counsellor was in my home and happened to see B-man spark into one of his rages first hand.  She was astounded by the ferocity of it. She tried everything in the book to get through to him and calm him - failing at every turn.  She then watched me wrestle with him gently but firmly until I had him in my "control position" and we sat for an hour until he calmed himself. (Thankfully that day it was a short tantrum) From that day on she became an advocate for me. Firmly supporting me and telling Drs I was not a lousy parent, but had more to cope with in my son than they had ever seen.

It was 1998, and the internet was still uncommon for people in their homes, but we had had the internet for over a year by this stage.  I scoured website after website, reading any medical papers or information I could find on child behaviour.  It was a hard slog as internet or not, information wasn't as readily available as it is these days.

One day I stumbled across a description of Aspergers Syndrome.  I instantly saw my son in the description. His obsessive behaviours, his obsession with routine, his need to have things exactly his way or he'd fall apart. The emotional overload he would experience when out shopping or anywhere with bright lights, loud colours or lots of people. His lack of speech. Later on I'd learn that his traits were actually Autism, not Aspergers, but at the time, AS felt like an answer to my prayers. I finally could understand what was going on with my son, and some of why.

I had no idea how long and painful the fight for a diagnosis would be... or even that it would be a fight. I could see so clearly what was going on with my son, I just could not understand why the Doctors failed to see it. Why they were so fixated on past belief systems and not open to the new learning going on in the field of medicine. Regardless of what they thought or said... I knew my son, and I knew one day, somehow, somewhere, someone would see him for who he was and we would find the help and support we needed. I couldn't control what lay ahead, and I had no idea how to prepare for it, but I could be willing to do whatever it took, and willing is exactly what I was.

~M~

A Rocky Start

Almost 18 years ago, I looked at the babe lying in my arms and wondered for the hundredth time what I had done to make her hate me so much.

I know now my sweet angel did not hate me, but at the time, I had no idea what was wrong with her. I had never heard of Autism or Aspergers Syndrome. I only knew that nothing I was doing seemed to work. What was wrong with me? Why was I such a terrible Mother? Why could I not give my baby relief? Peace? Calm? Joy? Why was all of it beyond my grasp? The only peace came in the brief 5 minute naps she took in sheer exhaustion from screaming.  I held her almost round the clock, wrapped, snuggled, rocked and tried to feed her. I did everything "they" told me I should do.

As parents we put so much stock in what "they" say. As "studies" are put forward saying we should have this kind of nappy, or that kind of bedding. That our babies need this sort of holding, and that much cuddling a day... or that much being left to cry it out. How much food it too much, how much sleep is enough, how many times a night they should be waking us... on and on it goes.

Looking back, I can see that if I'd followed my gut more, and been guided by "them" less, my daughter and I would probably have been a little calmer and happier... but I was 21yo, a new Mum who was so exhausted from lack of sleep, I couldn't find it in me to have even a sliver of faith in myself or my knowledge.  Especially when every time we went to see a baby health nurse or Doctor, I was told everything I wasn't doing & how many things I should have been doing differently.

Motherhood was all I had ever wanted. I had grown up dreaming of being a Mother.  I knew I was young, but I had married young and prior to her birth, I could not have felt more ready.   I loved her more than I ever dreamed I could love a person, yet loving her felt harder and harder by the day and I wondered more and more if she'd simply be better off with someone who was capable of making her happy & giving her the comfort and peace I felt I was failing to provide her with.

I quickly began to learn being a Mother was not all I had dreamed it would be. Constant battles with thrush and mastitis, brought on by excessive amount of milk production. Projectile vomiting due to my babe having bad reflux immediately followed every feed time. She would scream from hunger, scream from struggling to eat, scream when I held her, scream when I put her down. I came to dread feed times as much as she did. The more I tried, the more she screamed. I longed each day for those tiny 5 minute naps when I could catch my breath for a moment before her screaming started all over again.

Some days I would place her in the cot as she screamed.  I would make sure she was safe & secure, then I would head out to the back yard & shut the door.  I know may people would have a fit at me leaving her in the house on her own... but that act was the sole thing that prevented me from causing harm to my baby. I didn't want to hurt her, I wanted to make her happy. At times though, I was pushed to the brink of losing it. In those moments, when throwing her through the window was more tempting than I care to admit, the time I spent in the back yard was what saved both our lives.

I was constantly told by my spouse to 'shut that baby up'.  If I dared leave him with her while I raced down the street for something I needed to make dinner, he'd call me, not say a word and put our screaming baby on the phone. The angrier he became, the less I left her with him. It wasn't worth the cost.

For two months, I persevered with breastfeeding. Desperate to 'do the right thing' for my baby.  The pressure to breastfeed was unbelievable, and I truly did want to. I loved the fact my body could provide nourishment for my baby, but the battle to feed her was torture for both of us. The pain of feeding her while she fought me was horrendous... and I had the blisters, bruises and bleeding tears in my skin to show for our efforts.  One day however, I simply couldn't take her refusal any more and I made "terrible Mother choice number one" - and I expressed enough milk to give it to her in a bottle. I felt laden with guilt as I made that bottle while my daughter screamed  her lungs out in her bouncinette. I had been told by the baby health nurse not to give her bottles. That it would make it harder to feed her, along with a list of other reasons for why bottles were evil and wrong. I did it anyway.

Follow that up with what I viewed as "terrible mother choice number two" and as I pushed away images of the frowns and displeasure I knew the nurses were going to give me... I did not pick my baby up.  I left her in the bouncinette, grabbed a couple of cloth nappies & propped the bottle in her mouth for her to feed herself. I figured she was going to scream anyway, so why pick her up?

I waited... ready for her to spit it out and scream. But it didn't happen. She was silent. She was *eating* and she did not cry for the entire bottle. She drank a full 120ml for the first time, and once she was done.. she continued to be quiet. I was stunned and couldn't help but wait for the screaming to begin again, yet she lay there looking at me calmly.  I picked her up to burp her, and she instantly began screaming once more, quickly followed by a massive projectile vomit.  But in there... there was a glimmer of hope, for my baby girl had finally not cried for longer than 5mins.

Over the next couple of weeks I continued to express her milk and giving her bottles. I tried periodically to breast feed her again, but each time produced the same screaming battle with her as had existed since her birth. Holding, rocking or bathing her... anything that required continued physical touch continued to prompt massive screaming sessions. So more & more I began to leave my daughter in her bouncinette or pram. Combined with a visit to a residential unit (I'll write more about that later) gradually she began to calm.  The occasional smile came out of her and bit by bit we found a measure of peace settle between us.

Things still weren't perfect, I still felt like she hated me & that I was a failure as a Mother because I simply could not calm my baby in any of the ways I was told to, but we battled on, both surviving, both still breathing & taking each day as it came.

It would be a further 12 years before my daughter was diagnosed with Aspergers Syndrome - such a long, long time to go without knowing why things were how they were, but as she grew, we made our peace and found moments of happiness and joy in our days.... and I even received the occasional hug and kiss - only ever on her terms, but they happened, and each one made my day & eased my heart.


~M~