The Brick Wall

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THE BRICK WALL

I wanted to write this post to attempt to fill in the gaps for family and friends regarding the goings on with my kids and specifically with my youngest son *Lucas.

I know that a lot of you (particularly family) rely on me writing about this stuff to keep you in the loop and I’ve been terrible at staying on top of this blog. Partly because I’m kinda busy lately and any spare time I do have is usually taken up with kid stuff and also because it’s all a little overwhelming and I am trying really had to not be all doom and gloom and come across all negative. Because, let’s face it – that kind of writing is as depressing to read about as it is to write it.

I also want to thank those of you who have been constant with their prayers and encouragement because that’s what has kept me afloat these past few months. It hasn’t gone unnoticed and I am so very appreciative of it.

So, *Lucas:

He hasn’t been very well at all, mentally, and towards the middle of last year he took a very steep downward spiral and like his older brother did at the same age, he became suicidal and majorly aggressive. Not to other people but mostly through self-harming. I won’t go into details for his privacy but suffice to say that there was no way that I was going to sit back and let this monster take over my baby in the way that it had threatened to do with *Harley only a few years earlier.

The first step was having a meeting with his school counsellor and principal and through them I was put in contact with a family referral service.

The family referral service then helped me find a child psychologist who specialises in autism and mental health disorders and have also helped fund these visits as it is a private practice and unbelievably expensive.

During July, I asked my Mum to move in with me for the entire month because I was falling apart and the magnitude of trying to hold down a job and parent special needs kids just about sunk me. I am SO thankful that I have her and honestly: I don’t know what would’ve happened had she not been able to step in and help me dig myself back out. She has been a constant support since then and has held my hand through every step of this harrowing process.

*Lucas’ Paediatrician put him on the same anti-psychotic meds Harry is on, only he doubled the dose after it not having the desired effect.  I still failed to see much of a change in him (apart from marked weight gain which is one of the ghastly side effects of the drug) so I have been gradually lessening the dose until we can find the right balance. Now, he is holding at a lesser dose but he is also undergoing intense therapy so that probably as a lot to do with it as well.

I have just started attending a “parenting challenging behaviours” course that was strongly recommended to me by his psych and after battling my own reservations about this- I went for the first-time last Thursday night. And I’m really glad I pushed past my own junk to go because I can see that the next 8 weeks are going to be the equipping and empowering that this worn-out mother desperately needs.

(My reservations mostly centred around feeling quite hurt and affronted that my parenting skills were being challenged and judged because I felt as though it was somehow my fault that I was once again dealing with the head mess that is out-of-control children).

But I posted a little something on Instagram about this and received some really encouraging comments that helped me to get over myself and realise that it was the best course of action for me to take.

So, the course: I wrote down a ton of notes on Thursday night (none of the other parents did – I think they were a bit confused by me but I know how forgetful I am and didn’t want to walk away not remembering vital information). And I have decided that I will write some blog posts in the next few weeks outlining what I have taken away from the workshops so that I have an online copy of this as well as the scribbled notes in my journal.

Also, because the internet (particularly autism parent-written blogs) are the first place I go when I have a question about behaviours or development and there’s a chance that reading this might help some other parent out there on their own 3am google fest.

(I need to mention that this information is not my own and if you would like to know more about the group of professionals that are teaching this, please email me and I will send you their details. I just don’t want to publicly give away my location so that I can protect my kids).

 

What I took away from Thursday night was “The Brick Wall Analogy”

I have always wondered why the meltdowns and tantrums in my boys seem SO much worse now that they’re older. I mean, when they were 2 -5 (typical developing children’s usual tantrum age) – they would lose it and although their episodes could sometimes go for hours on end, they were shorter and less intense than the episodes that I’m seeing in them now that they’re older. And that didn’t make sense to me at all? Because I thought that they were something that kids just “grew out of” or learned new ways to self-regulate, and they do.

But sometimes, they don’t.

And that’s where the brick wall analogy came in.

All walls are built with a foundation. Some foundations are strong and sturdy (nurturing, loving, typically neurologically wired) and the base for the child’s development is solid. But some foundations are a little weaker. (Illness, trauma, abuse, disability, neurological difference etc)  and though the foundation is weaker – it can still hold a wall because the foundation learns to shift to make allowances for these things (because it’s all it’s ever known).

Over the years, the bricks of learning and development and life experiences are laid one by one until eventually there is a very tall wall that is now strong enough to withstand the onslaught of life’s issues that most adults are equipped to deal with.

But in some children with learning difficulties, neurological disorders, trauma, illness, abuse, disability, situational grief (and a vast list of variables) there are bricks that are either not laid or they are damaged.

Sometimes these bricks are things like self-regulation skills, social skills, language skills, motor skills (gross and fine) and the bricks that are not laid for whatever reason don’t appear to be too much of an issue when the wall is still toddler or child height.

But the taller the wall gets (the older the child becomes) the more that the missed bricks in the wall begin to show their weakness and the more that the wall becomes unstable and noticeably different to other walls.

It starts to sway more because of the missed bricks and the force on the wall; like a strong wind (“life happenings”) cause the wall to take much longer to stabilise.

Now, all is not hopeless, A wall can have the missed bricks patched up later by an experienced brick layer, (child mental health professional) but it’s important to note that these patches will never be as strong as if the brick was correctly laid initially in childhood. Still able to hold the weight of the wall but the more bricks that are missing – the greater the repair job and the more unsteady the wall.

And that’s often where the challenging behaviours begin. The child is missing vital bricks (in Lucas’ case it’s self-regulation and social skills) and right there is how I can now zero in on exactly what my boy needs.

Does anyone else find this as fascinating as I do?

I walked away from the first session feeling as though I had hope for the first time in a very long time and once again – I’m SO glad that I went.

Anyway, I went and got my hair all fancy at the hairdresser this morning and I’m about to go get ready for a girl’s night out with a group of friends so I will leave it here and wish you all a fabulous weekend.

Fi x

 

 

Waving the white flag

white flagI’ve been pretty terrible at blogging this year. My heart just hasn’t been in it and I hate that almost everything that I have to write about is either negative or has a negative slant on it. I always told myself that I wasn’t going to become a ‘woe-is-me’ blogger but guess what? The life that we are currently living is hard. In fact, it is really damn hard and I am struggling to keep positive and optimistic with all that’s going on. Which is most of the reason that I’ve stayed away from the keyboard.

Paul admitted to me last week that he is half expecting to come home from work one day to find me gone and the children left to explain my absence. He has watched them gradually wear me down but instead of helping me – he steps back because HE can’t frickin’ cope either.

He’s not far off the mark to be honest, I have felt like leaving many times but would never do that to my children. As crazy as they have been driving me lately – they are still my world.

One thing is definite though – I need a damn holiday away from the aggression, the anger, the defiance, the disobedience and well, pretty much everything else as well. Term three has only got one week left and the kids are more than ready for the 2 week holiday break, but I am not even close to ready to have them home all by myself.

But I will survive because I have to. I simply do not have any other option.

But do you know what probably gets me the most? The fact that I have poured almost 6 years into researching, reading about, practising and implementing strategies and techniques to help my boys with things that they struggle with due to their autism but still, STILL I feel like I know absolutely nothing!

Every time I start a new unit on my course – I am reminded that there is still so much about autism that I do not yet know. It is vastly overwhelming and my head is swimming with information overload and I lack the ability to apply the head knowledge that I have to the appropriate situation(s). I feel as though we are operating in survival mode and treading water (once again).

I feel like one of those high-rise building window washers. I stand perched on the rickety scaffolding outside other people’s window ledges on the wrong side of the glass. I peer longingly into their lives through their dirty windows but all I can see is how perfect everything appears though the pane that I am cleaning with my own hard work -hard work that is rarely ever appreciated. I notice what these other people have, how they live and I feel lonely and overwhelmed by how far my family is from what everyone else seems to have. I am not jealous, but I am very aware that I am just looking in from the outside. I don’t fit in these kinds of worlds. I don’t belong in these scenarios.

I know that as I stand here balancing on the edge – I am not wearing a harness and that all I would have to do is take just one step backwards to end this pain once and for all.

But I also know that I am stronger than that. I remind myself that

 “The reason we struggle with insecurities is because we are comparing our own behind-the-scenes with everyone else’s highlight reels” Ps. Steven Furtick

But even remembering that, I am aware that right now – things are beyond tough in this house.

Frankly – I’m tired of being told that “all parenting is hard”. Yes! Yes it is. I have never denied that nor have I implied that it’s not! But I react badly inside when I hear that phrase because what I’m hearing is: “Stop complaining – you’re not the only one who has challenges with your kids”.

But what people seem to forget (or not even realise) is that we are doing exactly what every other parent is doing AND THEN SOME. I’m so over hearing the words ‘boundaries, rules, expectations, challenges’, and other words that imply that our boys are so out of control because we are crappy parents who have dropped the ball. Don’t people think we’ve already tried all those things? Do people just assume that my kids are left to their own devices all the time and now we are reaping the benefits of that kind of neglect?

I mean seriously?

I sat in the foyer of church this morning with Paul crying because I feel that no one, NO ONE gets it. I am tired of people telling me “chin up” or “you’re a great mother” when they haven’t had to walk in our shoes or live in our house.  Autism can be a nasty bitch and trying to explain it to someone who doesn’t live with it is akin to describing childbirth to a man. All you can tell him is “it hurts like hell but it’s worth it in the end”. Details and specifics are left unsaid because it would make him uncomfortable and it’s frankly disturbing. As sure as a man can empathise with you and a friend with your situation – they will never fully GET IT!

I have tried everything that I can think of to help my boys to manage their emotions, conquer their anxieties and overcome their behavioural difficulties, but sometimes – nothing works and you have to wave the white flag in surrender.

Well, I’m waving it madly these days but I am also using it to dry my tears and blow my nose. Not only have I taken off my “everything’s peachy” mask today, I have thrown it angrily on the ground, stomped on it and thrown it repeatedly at a brick wall.

I sit here typing admitting that I am exhausted. Mentally, physically and especially emotionally. I am tired. I am sleep-deprived and I am worn out from dancing the stupid autism dance. I don’t know all the steps and I have no frickin’ rhythm anyway.

I am angry that we are continually knocked back for any sort of respite and wondering day to day just how we are going to make it out alive. It’s one thing for people to tell me “you need a break” but it’s another thing entirely for that to actually happen.

Right now, my marriage is held together with Band-Aids that have been there so long that they’ve lost their adhesive properties and are just barely keeping us together. They no longer cover the ugly wounds or the scars – they aren’t really any use to us at all. To be truthful -I just don’t know if we are going to make it or not.

I didn’t write this to extract sympathy, to beg for help or to paint a nasty or critical description of autism, but to be 100% truthful and own the fact that right now – I am no help to anyone. (Which is also why I have decided to turn comments off on this particular post).

But through all this pain, this hurt, this exhaustion and this anger at injustice – one thing remains….and that is the faithfulness of my God who keeps me in the midst of the constant storms.

There is a story in the bible in Exodus 17 about Moses. When his hands were raised – the enemy was defeated but when they were lowered – the enemy triumphed. Moses became battle weary and unable to continue to hold up his hands but through the support of his friends Hur and Aaron who held up his hands until the battle was won, he got to witness Israel prevail.

And I believe that my friends who are praying into my situation and for my family are holding my hands up for me until the battle is over. Because from where I sit – this autism parenting gig is only getting harder and harder.

25 Things that I want my children to know….

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I’ve been thinking a lot lately about what I really would like my children to learn about life and what I consider to be the most important things
that I can teach them in my role as their mother.

I’ve written them all down in the form of a letter that I will print up and give to each of them when they turn 18. I already tell them these things and hope that they will be practising them everyday long before they reach adulthood.

Here goes:

My dear, precious, amazing children,

1. Please know that I love you all so incredibly much. And love is most definitely a verb.

2. There is nothing that any of you could ever do that would cause me to love you less. But this revelation is not permission to break the law, intentionally hurt someone or create havoc. There is also nothing that I wouldn’t do for any of you. But don’t deliberately push me just to find out my limit.

3. There are not enough hours in the day to show you how special you all are to me, and I want you to remember that even when it appears that I am pre-occupied and too busy for you – I’m only ever a hug away. I will drop anything if any of you ever need me. And don’t believe anything or anyone that disputes this because it’s simply not true.

4. I believe that you are all capable of achieving great things and I will support whatever life decision you make.  Even if what you choose to do is non-conventional and low paying. As long as it makes you happy and you do your best.

5. Having an asperger’s diagnosis gives you a reason for anger and resentment but not a right. There is a big difference. Some things will always seem more challenging and harder for you than for others but it’s not an excuse to give up. You are all blessed with many talents and skills and you WILL succeed despite being wired a little differently to your peers. Use this to your advantage instead. Choose to excel.

6. Respect those that are in leadership over you. You may not always agree with them but respect has nothing to do with this. If you learn this – you will go far in life.

7. Treat other people as you would like to be treated yourself and always go the extra mile.  Let people cut in front of you in lines, pay for friend’s meals and be the first one to say “I’m sorry” .

8. Don’t retaliate. It only exacerbates the problem and makes matters much worse. It doesn’t achieve anything but creates more drama and grief.

9. Always take the high road  – The view is much nicer from up there.

10. Don’t argue for argument’s sake and don’t desire to be right at all costs. It’s just not worth it in the end. Agreeing to disagree is a safer and much kinder route.

11. Stay close to one another. One day your father and I will no longer be around and you will all need each other.  Even when you’ve all grown up and have gone your own ways – keep the sibling link alive and nurtured.

You will be pleased that you did.

12. Always do your best. You don’t have to always win, but as long as you gave it your best shot – that’s the most important thing.

13. Know what you want out of life and give it all you’ve got. Don’t worry if your dream is not the same as everyone else around you. We were all created differently for a reason. We don’t all have the same giftings.

14. There is no right or wrong choice when it comes to life plans.  The catch phrase I want you all to memorise and repeat as your life mantra is : Different is NOT wrong.

 15. Be who you are. Be who you were created to be. Don’t mimic other people because you envy their lives. Things are never really as they appear. Everyone has problems – some people are just better at hiding theirs than others.

16. Don’t sit back and expect everything to be handed to you. Work hard and work faithfully. God will see to it that you are rewarded accordingly.

17. Don’t believe everything that people tell you. If it doesn’t line up with the word of God and doesn’t sit right within you – don’t take it on board – it’s not for you. It’s ok to say no.

18. Don’t cheat and don’t be dishonest. You will ALWAYS be found out on both accounts and people will learn that you cannot be trusted.

Keep your integrity in everything.

19. Speak words of life and words of love. Don’t beat people down verbally and don’t always say everything that you are thinking. Once a sentence is out- it’s impossible to take it back again.

Think before you speak.

20. Choose you life partner wisely. Choose someone who you not only love, but someone who you respect. Make sure it’s someone that treats you how you deserve to be treated and treat them well in return.

21. Talk about everything before you decide to marry.

22. Ask the hard questions like:  Are we having children? When? How many? Where will we live?  What is our plan B if things start to go awry? & What is our ultimate escape plan as a family?  If you both know these things up front – most things can be worked out before they occur.

23. Aim high. Don’t settle for mediocre – you deserve the very best in life and don’t let anyone tell you otherwise.

24. Know your limits and learn balance. People pleasing is very taxing on your soul, your emotions, your family and ultimately your life. It’s impossible to serve two masters. Don’t let your work become more important than your family and don’t let anything become more important than your relationship with Christ.

Lastly and most importantly:

25.  Put your trust in God not man. Man will ultimately fail you because we are all only human but God will NEVER fail you or forsake you. He will never let you fall.

Love always Mum xxxxx


Watch this space…I’m just processing some stuff!

My baby Lucas turns 5 in just a couple of months and will be old enough to start school next year.

Actually….he will by law HAVE to start school in 2011, and between you and me….I’m nervous.

Not because I’m dreading the mother-child bond being broken for 6 hours a day, but because I seriously wonder whether or not he’s even ready.

Most people who read this blog would be aware that the majority of my posts are about Harley and how he presents with his brand of autism but have probably noticed that I rarely write much about Lucas.

Well….there are a couple of reasons for that.

Firstly – Harley takes 80% of our time, energy, brain space and motivation that seriously….there’s not a lot left at the end of each day. And frankly….he alone provides more blog fodder than I could possibly get through!

And secondly – because I’m still in a really funny place about Lucas’ diagnosis at all.

He does have an official diagnosis from a paediatrician as “Aspergers Syndrome” but I question that daily even as his own mother.

But don’t get me wrong here….I don’t question that he is somewhere on the autistic spectrum, I just have trouble getting my head around the idea that him and Harley share the same diagnosis.

Yes, yes I know…..it is a HUGE spectrum and no two kids are the same but the way that he and Harley present couldn’t be more opposite so to have the same diagnosis seems rather odd!

I spent months studying Lucas, observing his play and watching his attempts at social interactions trying to convince myself that it was just “learned” behaviour from spending so much time with his big brother but eventually, I had to admit that it really was more than that.

Lucas’ speech delay was enough of a concern to schedule a Paediatrician’s appointment so I thought I may as well “throw the facts out there” and let the Dr take the lead where he wanted to.

He diagnosed him on the spot. He told me that he had been observing him every time I brought Harley in for an appointment and had noticed things even then.

I was surprisingly calm. I think that somewhere deep down, I had already prepared myself for this so reacted accordingly.

He goes for his CATS assessment next week and I have been filling out all the paperwork they sent me in preparation.

There was also a section that I had to get his pre-school to fill out which they did for me last week. They believe that he has aspergers but admit that they really don’t see it a lot. And that’s true. Even I as his mother have to admit that there are times when I don’t see it as clearly as I did with Harley.

I noticed in the report that it contained things such as :

Lucas has minimal verbal communication when playing alongside peers.
Lucas wriggles a lot during story time.
Lucas sometimes needs questions repeated.
Lucas does not initiate conversations .

And they have told me that he doesn’t ever call the teachers by name but instead waits for them to look at him before asking for something.

A friend of mine has reported that she has known him to stand behind her and make vocal noises to get her attention and when he has it, he will then go in for a hug but he won’t approach her.

He stands “beside” the other kids but appears completely oblivious to them during play. He has NO concept of sharing, turn taking or waiting and sometimes I can’t even get his attention unless I physically touch him on the arm. He quite often seems to be in daydreamland.

Another big thing I noticed when I read the pre-school form was that a lot of the multiple choice questions  in the survey were answered in a completely opposite way to how I would have answered them in the home environment.

So this shows me that he is very different in the home to what he is at pre-school.

That’s high functioning if you asked me.

They wrote that there was no indication of a delay in receptive language but that there was a significant expressive delay.

But when he had a full report done by his speech therapist last year, she found that when using the OWLs –Listening Comprehension Scale that he only scored 16 and the normal range for his age group should be 16 to 85,  and the expressive result was only 10 (16 to 85 being the average range again).

So I’m really confused now and don’t know which way is up!

I see it then I don’t see it than I do again and around and around in circles!

I have never once, not-even-one-day doubted Harley’s diagnosis since day dot. I knew from when he was a baby that something was very different about him, but Lucas…..I JUST DON’T KNOW!

* I convince myself that Lucas is just quirky and then I catch him lining up his cars in colour order.

* I tell myself that it’s just a speech delay and then I hear him counting to himself while he paces around the room.

And sometimes when I am sure that he is just “copying” his brother…..I notice him being perfectly calm during one of Harley’s epic meltdowns but then half an hour later he is in hysterics himself because I gave him a drink in the wrong cup!

I think I need to just switch my brain off indefinitely!

Or at least until I get the result from his assessment!

Watch this space …..