Thursday, February 10, 2011

Having a moment.

Maybe it's just because it is late or because I can't really sleep that I'm up reflecting but I am.

Today I kinda had a 'moment'.

It was a really grand moment to me but to anyone else who had witnessed this same event it would have been like nothing had happened. It would have been just the norm. It would have been what was expected.

To me it was so totally wonderful because I was reminded in this one split second that this was soooo far from our 'old norm' fact I sometimes wouldn't allow myself to wonder of the possibilities of ever having 'a normal experience' like I did today.

So what happened?

 Elijah and our other two eldest munchkins had their first golf lesson (with other kids!) together.

Like I said, what's so special about that, right? Nothing from the outset.
Just rock up, kids play some golf and go home.

Not for me. 
Well not today anyway.

For me today, for a split second I was reminded about what our life used to be like. Not that it was ALWAYS like this, but it was filled with ALOT of this.

I remembered the little boy pre-diagnosis of Autism who could not be outside in the breeze without screaming in pain that the air felt on his skin like 'bees are attacking me!'

I recalled how a boy once brushed past him at a park and he was convinced (because of the sensory pain to his skin) that this other boy was trying to kill him. I remember being so upset that day because we had to leave the park straight away because the meltdown was so big and I just couldn't console him.

I'm choking back big tears in the back of my throat even as I remember these things.

I remember how he melted down for half an hour in my arms as I rocked him back and forth all because he had taken me literally at my word and I didn't get how he could not just process what I was saying! On this particular day, I had told him we were going home to make sandwhiches after we'd been shopping. Needless to say, by the time I got home with 3 kids under 3 at that stage, unpacked the groceries and tended to nappies that needed to be changed etc, the last thing I was going to do was let all 3 kids try and 'help' make sandwhiches. Any mum knows that would take twice as long and we were all hungry and I was completely wiped out! I was also at that time fighting an auto-immune blood disease in my body and got more tired alot quicker. I began making the sandwiches. He melted down and kept screaming pointing to the sandwiches! (Just a note here: a meltdown is NOT the same as a tantrum. They come about because of two different reasons primarily and a meltdown is much more intese). I could not understand WHY he was so upset! The other kids were just sitting waiting for theirs! Why was he melting down over something so insignificant?! Through my own frustration I yelled at him, "I DON'T KNOW WHY YOU ARE SO UPSET" and through his tears he yelled back, "YOU. (sob) SAID.(sob) WE.(sob) WOULD.(sob) MAKE.(sob) THEM (sob)". "We are making them!" I responded. "NO! NOT YOU, WE WOULD MAKE THEM TOGETHER". He had literally taken me at my word and could not understand that the plan had changed. I had no idea back then that autistic kids often struggle with plans changing and will almost always take the things you say literally. He was devestated and so was I. I remember putting down the sandwiches and just rocking him in my arms; both of us doing the full blown 'ugly' cry. I remember the other kids being also really upset watching how distressed he was. I remember that day just saying "i'm sorry mate. I didn't know..." and then just praying aloud, "PLEASE God, help me! I can't do this! I don't know how to do this!!!"

Every morning, getting him ready for preschool back then, was so tough. The socks would hurt his feet. The jumper was making his skin itch and he would scratch all over until it bled because it made him so uncomfortable. We had no idea about how much noxious a sensory processing disorder can feel. We didn't yet know that it was like the noise of nails down a chalk board 24-7. 

I recalled the time that Stass sang 'his Thomas' song when it came on the tv...he just screamed running round and then hid under the table and ran to the door, banging on it, to try and 'escape'. It was like it was causing him physical pain and it certainly caused all of us pain to watch daily meltdowns like this.

I remember reading the report about other children were beginning to exclude him from their social play because he obviously didn't understand the social rules of their games and make believe play. I was heartbroken when I read that report.

I thought about how he used to flap his arms when he was stressed + use 'baby voices' to communicate quite a bit of the time. I remembered how his knuckles at one time were getting quite restricted and how often in a day I would remind him, 'shake out your hands matey'.

One of the hardest days for me pre-Autism-diagnosis was having him in swimming lessons. After some weeks persisting with it, despite it almost always ending in tears, the teacher told me it might be best to discontinue the lessons. No other parent I knew was told it would be best to stop lessons. Everyone I knew had their kids enrolled but mine couldn't cope. He'd be fine in the car on the way there but as soon as we got to the pool, he'd change. I didn't know anything about sensory processing disorder at that time but if I had, I would have understood that as soon as we set foot into that indoor pool, his senses were completly overwhelmed and he would shut down; from the VERY strong chlorine smell to the bright fluro lights to the teacher giving instructions and all the fancy pool toys that he was not to play with. He would often just be floating right down the other end of the pool in his own little world.

I haven't recalled some of the worst and most trying things here (for privacy reasons) but there were some very difficult days for our son, our family and our marriage.

The day he was diagnosed we declared outloud in our kitchen, "We know you will never leave or forsake us Lord. We know you will be here with us and will show us what to do for this son of yours that you love so much".

And you know, after so many many prayers, after reading books, going to seminars, getting ourselves educated, changing his diet dramatically and homeschooling....we have seen HUGE changes in such a short period of time.

And sometimes because of these changes, we almost forget (which is a good thing!) that he was once diagnosed. He still has issues; don't get me wrong, but so do all our children with something or another. All of us as adults struggle wtith something and Liji is no exception. We know Yah (God) will continue to give us the wisdom we need to raise this boy in this family along with all our other beautiful kiddos.

So what was the big deal about today?

Well in that split second that I remembered some of these moments, I also saw in front of me a boy who was taking turns and letting others go ahead of him. He was showing empathy. He was taking instruction from a person he had just met. I saw a boy who was trying something new for the first time without any set guidelines or photo story-books having to be given to him first in order to prepare him. I saw my little guy there enjoying himself so much, trying something new and making new friends.

I saw my son having the time of his life with his siblings and I realised that I was actually living so soon, the very thing that I wondered might ellude us forever; a feeling of normalcy.

He wasn't being asked to leave, he wasn't hurting anyone, i wasn't scared he might run away if someone wasn't watching him. No. He was just being a 'normal' kid (what's 'normal' anyway right?!) playing along with his brothers and sisters.

And in that moment it dawned on me that we actually have been living a 'new kind of normal' in our family for some time.
And maybe I just hadn't actually taken the time to acknowledge that. That's not to say I don't think about it or we don't talk about it because I do, we do.
But it was a longer moment than usual.
I never want to take for granted just how different our life is now.

So I guess, I'm acknowleding that now and thanking Yehovah (God) my great soverign God who heard all the cries and prayers of our heart and who is faithfully walking this journey with us. We could not have gotten through this without each other and the support of our family and friends.

It truly is like living a miracle.
Not that it's all perfect or anything.
But nonetheless; where we are now considering where we've us, it IS a miracle.
And I am just so thankful.

Here's one of all three older munchkins today at their first lesson hit around :) ...

More another time,
Love Lus x


Enid said...

I am so excited for this new Norm for you Lusi and for the kids.

YahKheena said...

Oh Lusi... you had me in tears, of course you had 'a moment'!!

Yah had done a great, great thing for your son and your family!!

See this is why His People continue to fall in love with Him every day!!

He is an AWESOME EL... and He is to be GREATLY PRAISED!!!


Mommy Set Free said...

Wow Lus! I didn't know this a struggle in your family! Thank you so much for sharing this! What an awsome testimoney to the work that YHVH is doing in your family! Halleluyah! I am praising Him with you!!

We have had some crazy adjustments (shall we say) bringing our adopted girls home. Things that weren't "normal" by any means. We wondered if we would ever get through it...but we too have recently been reflecting back over our last 2 years and seeing how far Yah has brought us all. It is so very encouraging, isn't it?! He is so faithful! And here we are to tell of what He has done!! We actually survived it (and pretty well)- praise Yah!

Much Love, p

caz1975 said...

Oh Lusi I am sitting here in tears, I so know that journey and am so excited with you at the amazingly huge steps your precious boy has taken!! What an encouragement to me to remember to see how far my own boy has come too. Jaden had the same issues with swimming lessons and just this term at 11 1/2 years old he is finally doing swimming lessons because he wanted to learn and he is doing so well, he has completely astounded me!!! :-)

Stace said...

Cant Speak. Seriously Cant! You have touched my heart!! All of you do/have/will... Much Love to you all!!!
What a FANTASTIC 'moment' to have!!! xxxx

lusi said...

Thanks everyone so much for your kind words.

Pamela - adoption must be an incredible road full of ups and downs. It's so wonderful that you can see and talk about how far Yah has brought you in the past 2 years. Praise Him!

Yahkheena - that is so right and so much of what was welling up in my heart as I wrote that post; He is greatly to be praised!!! Bless you :)

Stace + Enid - thanks for your encouragement xo

Carolyn - It's so wonderful to hear about Jaden and the swimming lessons! Yay! These 'small' things are HUGE for our kids! I am really celebrating that achievement with you!

Lots of love,
Lus x

singing mama said...

So wonderful that you are on the other side now Lusi praise Yah!! Elijah is a lovely boy whose tender heart shines thru and I truly cannot imagine how hard your path must have been, but looking at him I can see how hard you have patiently loved him and walked him thru this difficult path.
We are on the other side of this path at this time, ESP with Miras sensory issues getting worse at the moment , but we too have hope that Yah will take us to the other side of "normal".
Luv Donna

Sumara said...

What a beautiful moment. Love you guys. xoxo.

Lilacstitcher said...

You wrote that beautifully Lusi. I'm wiping the tears away after getting an idea of just how awful it must have been for your son, and your family. I'm thankful that you are on the other side of those hard, long days, and that even though you can recall them, you can also forget them more too.

Love Elisa


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