Monologuing and commentaries

I've mentioned before Monkey Man's habit of monologuing or giving a running commentary on whatever it is he is doing.  I'm sure some of you can relate to it!

Currently he's playing a round of Angry Birds (With "In the Hall of the Mountain King" playing in the background of course) & barely stops to take a breath:




Oh I beat Darth Vadar bird
Now onto Tatooine
There we go
that's where most of the birds destroyed from only just two
Now onto Hoth
take that birds
Now this boss has the sort of dragons
but the Darth Vadar one for this is actually a giant version
I'm versing these dragons
Oh I just arrived at the boss and I've got one more bird left
There's two enemies left
I need to get them in perfect position
Oh I missed the boss
I'll have to re-do the level
Three birds left
No two birds left
and three enemies
Ohhhhhh!
I only just missed one, one enemy
Four more enemies one bird
Ohhh! I did the same thing again, missed an enemy
BOOM
Took out three enemies with TNT
Ok, final lot
Is the boss bird there?
Yep
Two more birds, five more enemies
Ooooh, I took out most of them with *A* bird
Now I just have to get the rest of them done
Then I'll have defeated the level

He'd be mighty unimpressed if he knew I was typing as he talked just now, but yeah, you get my drift.... it goes on... and on.... and on... and on.

For the longest time it drove me completely insane not being able to get Monkey Man to stop talking. He talks far more than any of my other kids! He also doesn't take any notice as to whether the person he's "talking at" is listening or not. If you don't reply, he just keep going until he asks a question of you - at which point he'll ask repeatedly until you answer, then go right back to his monologue.

Because of this, after a time it became easier and easier to just ignore his prattling and shut it out... except you'd come completely undone when he asked that question and you had no idea what you were responding about.  So I'm having to work on finding the balance between not only actively listening to what he is saying and knowing when he needs to just be allowed to talk for the sake of talking & doesn't actually need an audience. As well as teaching him when he needs to be quiet and how to do activities without needing to describe every single detail of what is going on.

When he asks to do a particular task, be it playing a card game, using the iPad or other solitary activity, I'll often say yes, but put guidelines on what is required in order for him to use whatever he has asked for.

They're usually things like:

1) Play without speaking unless you need help or need to ask a question
2) Remain while seated unless the game requires movement (otherwise on the wii in particular he spends the entire time literally bouncing all over the room)
3)Use the toilet before playing & remember to pay attention to his body's needs while playing. (to avoid toileting accidents which can often happen when he's engrossed in something he doesn't want to leave)

Number 1 & 2 can be extremely difficult for him some days, but other days he does really well in sitting and playing quietly.  If he forgets and starts bouncing, instead of getting cross at him for breaking his "rules" I ask him what he was supposed to be doing in order to play whatever it is he's using. He usually responds with "Oh yeah, sorry Mum, I forgot" and settles down again.

He doesn't always get it right, I don't always get it right - some days I expect practice in being quiet when he's simply not in the mode of being able to comply (usually when something has caused him to be stressed, agitated, hyper excited, etc) but we're working on the balance and bit by bit he's learning, I'm learning and we're having days where we're not clashing over his extreme noise levels.

Brrrr

It's cold today - a bit of a shock to the system after the heat we've had for such a long time over summer.  I'm not complaining though, I much prefer the cold.  It's also insanely quiet in my house. That's something that is a rarity and I cherish it when it does happen.  JJ is off on a camp and Miss A went to visit family, so it's just the boys and I currently. Ironically it's my boys who are the most quiet when the other kids are away.

B man is a very solitary young man who loves being alone, but also love time with his Mum.  Monkey Man is not normally quiet *at all* but with the girls away and no one to egg him on, the only noise coming from him is his near constant monologuing about everything he does... but today, so far he's quietly watching Cloudy with a Chance of Meatballs.

I can be a control freak at times, and have learned to get huge amounts of tasks done in a minimal amount of time.  Being term break, my homeschool whiteboard is currently filled with a list of jobs waiting to be checked off.  The first day of the holidays we used to get stuck in and do a heap of cleaning around the house - especially of the bedroom disaster zones, which meant from there on things could be taken a little easier. However, with the girls away, instead of plowing in and getting it all done, I've stepped back, let it go and yesterday did the bare minimum of what was needed. (cleaning the kitchen... oh boy was that needed!!) I'm using the quiet to relax, hang out with my boys playing games, curling up under a pile of warm blankets watching a movie or reading.

I'm sure several of my kids would prefer school holidays to be a time of going out and doing more, but I find for us, they're greatly needed as a chance to rest, re-coup, and regenerate before jumping head long into a new school term.  It's a chance to sleep in instead of 5am starts, to stay in our Pjs should we choose and just take it easy... and that taking it easy does us a world of good. It allows us to start the new term ready to go instead of starting it worn out from being busy all holidays.

Bedtimes are let go of in the first week and we kinda just stay up and do whatever, but in the second week, for the most part I bring back regular bedtimes which means the kids are back on schedule for school.

Reality though is it's not always this blissfully quiet on the home front. School holidays can be difficult at times, especially with all the kids home. They get in each others personal space, become irritated by each others habits or actions. B-man gets the most irritable. He likes quiet and calm, and having everyone home does not promote quiet and calm!

The girls love to sing... loudly. Sometimes together, sometimes different music at the same time from separate rooms. Monkey Man is currently obsessed with 'In the Hall of the Mountain King' and will carry around the iPad with him playing it on repeat (we're into day 5 of that one) or giving a running commentary about whatever game he is playing or activity he is doing (while still playing ITHOTMK in the background). The three of them bounce from one room to the other interacting on various levels - frequently this includes getting on each others nerves and pushing buttons that make one or more of them explode into an indignant temper tantrum.

On those days, the quiet, calm and peace that I'm experiencing today, couldn't be further from my grasp if we tried!! I spend those day acting more like a referee than a Mum, selectively rotating kids through "solitary confinement" (aka individual down time in their bedroom to recoup before coming back out to the family) and I go to bed exhausted wondering how on earth I am going to survive the entire term break.  Ultimately though, we do survive, we do make it through - and relatively unscathed, it's just hard to see that while in the middle of the crossfire.

So today, the cold is a blessing, the quiet is a gift, and I shall enjoy my time with CB and Monkey Man.  I hope you also manage to find even a moment of quiet and calm in your day to regroup, gain some peace and reenergise.

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~

Exhaustion...

Let's face it. Having kids on the spectrum while rewarding in so many ways, is EXHAUSTING.

It seems every minute of every day is caught up with something they need - often even when they're not home.  I find myself regularly at the end of the day curling up on the couch thinking I don't recall ever being this exhausted.

When the kids were younger, things were much more demanding physically. I would constantly be on the go running from one Doctor to the next.  By the time time you throw in Speech Therapists, Paediatricians, Neurologists, Psychologists, Occupational Therapists, Social Classes, Parenting Courses, Podiatrists, Optometrists, Dentists, Audiologists, School meetings and so on for five kids... it quickly becomes a never ending roller coaster of appointments.  For years it felt like I was at Doctor appointments five days a week.

There was both an upside and a down side to this.  The upside was the help and support my kids were getting. I spent more hours in speech therapy alone with various kids than I care to even begin to try to count. Back in the early days, I didn't balance it all too well.  By the time I had all five kids - especially given the 4 years of practice between #4 and #5, I was well versed in juggling it all. However I wasn't so good back then of taking care of me.

I have always been a night owl, but regardless of how good or bad my kids slept, I was still up half the night, every night.  Most times I would read - I used books as my escape from reality. A way to hide from life when it felt like it was too much, and it often was too much.  But I hadn't learned to find that balance between caring for the kids are caring for myself.

I ran myself into the ground, burning the candle at both ends and in doing so, I undermined the very core of what I was trying to achieve.  I didn't eat properly, I hardly drank any water - or anything else for that matter.  I saw food as something I had to deal with if I had time, not as something that was necessary and desirable to keep me going.  In short, I was well on the road to killing myself off at a young age because I refused to take care of me and only focused on my kids.  They never went without food, without water, without anything else they needed, yet I refused to give myself that same level of respect and care.

Thankfully I learned to change my habits before they cost me my life, and so I am still here, able to love and cherish my children, and also learning to love and cherish myself.  I am much more caring towards myself, not just physically, but mentally and spiritually as well.  I still have lots to learn, but I'm open to learning now instead of being shut down to it.

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.

Strength and Faith...

I've been having a running conversation the last few days with a group of friends about strength and faith.  They often comment to me about how strong I am to have faced and gotten through everything I have in life, yet still be able to smile. Some have said how they wish they had that kind of strength.

I was telling them today how I feel that strength is subjective. What we face in life is also subjective. What we do or don't face, what we work through each day is different for each of us.  If we sit back & judge who we are, what we have done, our level of strength or faith based on what we perceive to be true about those around us... we'll never find the courage to really and truly accept our own strength. Our own faith for what it is. We will continue beating it down, hiding it away because we don't accept that is truly IS enough. That WE are enough.  

I'm guilty of doing that myself, all too often. Then at times, I'll have a moment of clarity... an "aha" moment & be able to see parts of me for what they really are instead of what I perceive them to be. In those moments it's like a window opening and the light shining into the parts of my being that I work so hard to hide from myself... yet they're the parts I should be allowing to shine instead.

Instead of writing it all out again, here's the crux of what I wrote to one of my friends last night:

Honey, that's the thing with the big picture.... it's big.  We don't have to understand it all, we just have to get through our piece of it & do the best we can in our little corner of the world.  What is my best or your best or someone else's best are 3 completely different things because we're three completely different people.



Besides... if you had been dealing with everything I have dealt with... it'd mean you had 5 Autistic kids. BE GLAD you don't LOL.



My best today was sitting on the couch with a hot drink & doing nothing.  Yup, nothing all day long. I just couldn't face anything else.  Sometimes life is overwhelming.  It's a fact.  Have you curled up & died?  No you haven't.  You fought to get back what you had lost, you're doing what you have the capacity to do with every part that you can manage to do it with.  That's enormous girl!

 

I've been tearing my hair out with stuff myself this week. It's stressful, frustrating & I don't know how or when things will get easier in certain areas. But you know what?  It's ok.  It will continue to be ok.  I always say one way or another, no matter how *I* feel things are... God has always, ALWAYS seen me through.  I just keep putting my faith and myself back in His hands.



The challenges I have faced in my life... I firmly believe I agreed to this path. My kids needed someone strong enough to hold the course no matter what. To get them through everything while still being willing to kick their rears & not allow Autism to become an excuse for anything.  I can do that! I do do that & always will.  The things I've been through have shaped me.  If I hadn't been through so much, could I be here today supporting you, loving you, inspiring you like you said I do?  No... it wouldn't be possible, because I wouldn't be who I am. Without my past I'd be different. So to me, it's worth it. I'm grateful for the path I have travelled, I really am.

I know not everyone believes in God, and that's ok... you have the right to make that choice yourself. Whether you believe in God, The Universe, Allah or whoever or whatever you choose, I'm cool with that :)  For me, it's God and His Son Jesus Christ.  Some days I am better at holding to my faith than others, some days I feel it has slipped through my fingers and I wonder how I will ever get it back. I usually end up finding it's there, I've just hidden it from myself because I've allowed the mountain of self doubt get too high.

No one is any better than anyone else, we all have different paths. I don't tend to see my path as being harder than other peoples, I just see it as different. I know most people would disagree with me there, because I've been told that time & time again, but I don't see it as harder. Once again it comes down to the subjective view of each person.

Has my path be difficult? Absolutely. Has it hurt? Yes... sometimes more than I ever thought it was possible to hurt. I still carry many of those hurts, hidden deep away inside myself. I'm the queen of hiding stuff away from myself & not wanting to face them lol.  

Bit by bit though, I'm striving to pull back each layer, and finally deal with my issues once and for all. It's hard work, but worth it.  Just as I've grown with each step along my path, I'm finding I'm also growing as I face things. Reality is, I made my choices in life, so it's high time I learned to own them. It's also learning to own and accept that fact that I'm human. I have both good days and bad days. I make good choices and bad choices.  Sometimes I step back & think holy s** I screwed that one up big time, but instead of holding onto that feeling, it's letting it go and moving on.  Each thing I learn to let go of, is one more ray of sunshine in my life... and I'm loving watching that sunlight grow bit by bit, day by day. It's awesome.

~M~

Some days are just plain hard

Sometimes there's not even one specific reason for why the day feels hard.  It just *is*.

Today was one of those days.

There's certainly lots of  things that have been going on here, that when all added together, currently have my heart feeling heavy and I just feel sad, flat and pretty much like I'd rather hide under the covers than face anything.  But life doesn't stop... it goes on, as do we.

Today I felt emotional and fragile.

The housework, phone calls I needed to make, everything just felt too much. I was talking to a friend on the phone earlier & she told me to take a chill pill.  You know what? She was completely right. I had worked myself all into a lather for no reason. Worrying about things that aren't worth worrying about. Causing myself stress where there didn't need to be stress. Creating issues where there wouldn't BE an issue if I just stepped back and took a breath.  Or as she said to me today "You're swimming in the pond instead of looking at it from the edge. Get out & look!" My friend is one smart cookie.

Her verbal kick in the pants was exactly what I needed to remind me to stop being a drama queen. It didn't change the fact things were difficult today or that I felt sad, but it DID change the way I was responding to myself.  Instead of wallowing in negative self thought & working myself up, I stepped back, acknowledged that things couldn't possibly be as bad as I was perceiving them to be & that the only thing making them worse was *me* and the way I was viewing them.

So, I did as my dear friend said, took that "chill pill" (figuratively that is) and today I did... nothing.  Yup, 100% absolutely, completely *literally* NOTHING and I don't feel an ounce of guilt for it.  What I could have used (and my body was yelling for) was sleep, but my head was going in too many directions at once to settle, so I did nothing instead.

Yesterday I had made a list on the whiteboard of what Miss A was to cover in her schoolwork today. This morning I was extremely grateful for that list, as I wasn't thinking clearly enough to finalise her days work. So while Miss A got stuck into her schoolwork, I sat on the couch with a warm drink & just sat there. No blog, no Facebook, no Pintrest, no digital art.... just sat and took the time to simply BE.

  As Miss A needed help with different portions of her schoolwork, she'd ask me a question . I'd assist in whatever way was needed... such as helping melt & pour wax to create an Egyptian wax slate for her to practice writing hieroglyphs on for her History project, but with most of todays work she was self sufficient so I had plenty of time to swallow that chill pill.

We ended up skipping science as I simply couldn't get my head around the new program we were starting. But you know what?  That's OK.  It's not the end of the world if we start the new science unit a day or two late.  After Miss A had put in some steady work, I called her over & we quit school early for the day & curled up and watched an episode of Time Team together instead.  Miss A *loves* archeology, so she was in heaven watching that.

The couple of hours of down time it gave us together did us both the world of good.  It was also helpful that Miss A had had that down time when things fell apart for her a little while later. She had walked to pick up a friend from school and walk her home as she often does. Unfortunately her friend for whatever reason, didn't see her there & Miss A waited for 30mins to no avail. She was heartbroken and came home in tears. However, because of the downtime she'd had, she was able to pull things back together more quickly than she would have otherwise.  We talked about the different reasons that may have been behind her friend not meeting her, and I helped Miss A see that her friend would never have stood her up on purpose. They're too close to each other for that. So once she was calm, she felt together enough to call her friend & see if everything was alright.

It's great when things can be sorted easily & simply.  It's not always the case, but I treasure the moments of 'easy fixes'. Tomorrow is a new day, a chance to start again. An opportunity to wake with a heart full of joy and to move on forward once more.  Today I'm glad I took time to take care of me, and I didn't need to "do" anything special for that to happen.

The housework is still there, bills are still waiting to be paid, calls needing to be made, and they'll still be there tomorrow.  But today, instead of pushing myself as I often do, I stepped back to care for me. It was definitely the right thing to do.

How do you deal with days when they just feel too hard? What do you do to carry on? Do you have special things you do to care for yourself when you need that extra care? (or even when you don't!)

I hope you take time to care for you today too... You're the only *YOU* there is, and that makes you pretty darn special. You're worth the extra effort :)

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~