Wednesday, 27 July 2011

once again I don't know what to title this post....

I don't even know where to start.
The last couple of days I've been teary. I've been stressed. I have had moments of wanting to just flop down on the ground, splayed like a bunch of boiled spaghetti, because I have nothing else to give.
Mental exhaustion.
I'd stand at the clothes line out the back, drop the clothes and bawl.
What the hell was happening to me?
I am usually Little Miss Super Positivity.
My last blog post was on 'Inspirational People' for crying out loud and how I am trying to emulate that....
Well we are all human after all.
We all have our breaking points.
This was it. My little breaking point.
Nothing major. I just reached my limit for the moment.
And you know, I am okay with that.
Everyone has that moment. Several times.
I know this isn't going to feel like this forever. I am lucky that I know this.
It is just part and parcel.
It's "going through the motions".

Yesterday I realised these feelings had a strong connection to what I was to go through today.
You see today was Mr Middle aka Jack's C.A.T's assessment (Child Assessment Team) at the hospital. Funnily enough we had done this before, with Liam. But with Liam it was a different kettle of fish. A different experience altogether. We knew with Liam the outcome was going to be: "Severely/Profoundly Developmentally Delayed" and that it didn't mean anyone knew what was going on in his head, it was just a 'surface observation'...
With Jack this assessment meant something very different. We were going in to confirm in a formal manner his Autism (expected) and where he is developmentally (we had no idea what to expect).
Prior to the assessment we had to fill out a myriad of paper work asking questions about what Jack can and can't do, what kind of behaviours he displays and so on. This was a little heart breaking (as was Liam's). It really made you dissect your beautiful child and display all aspects. Something a majority of parents never get to experience and thankfully so. It hurts. I mean I am so grateful and so proud of my children. But no parent should have to analyse every little aspect of their child's being.
So after filling out this paper work I was emotionally drained. And it showed.
Luckily I have my Knight in Shining Armour who has been so loving, caring and supportive. He ordered me to go out and have lunch yesterday.. Sushi.. my favourite.  But even a 'break' from things doesn't remove what is happening, and I had a few tears on my sashimi.
This morning I woke up with a positive refrain.
No matter what, Jack is my awesome Mr Middle.

When we got to the hospital we met up with a very amazing support person, the lady who runs our special needs playgroup/support group. I have known her for over 5 years, she is a miracle worker. We are blessed to have her in our lives. She definately calmed my nerves.
Once we entered the assessment room we were greeted with a number of people: the paediatrician who runs the CATs team, an Occupational Therapist, a Speech pathologist and a Social worker.
All very friendly, approachable ladies.
We discussed 'histories'... my pregnancy with Jack, his birth, his open heart surgery, the first signs of Autism...
There was a decent history. Reliving things can be hard.
Then it was time for Jack's actual assessment.
Hubby and I left the room and watched from a 'viewing booth', so Jack couldn't see or hear us, but we could see and hear him.
It was actually beautiful to watch. Jack without me, what he does, how he reacts. Sometimes it seems like Jack and I are an extension of eachother. We were very much separated at this point.
The paediatrician gave me a running commentary of what they were assessing. As well as adding some 'lighthearted' conversation, which I appreciated ( not for everyone, but I am a fan of not being so serious all the time).
There were moments I was truly blown away by what Jack was doing. Magic moments. He fed a baby doll with a spoon! He must be 'watching' me when I feed Liam, even though he seems like he is in his 'own world' half the time. He completed a puzzle without any problems, when usually he would get half way through and go 'wander off' and find something else to play with. This was due to the fact the room had nothing much in it. No distractions. Jack could do so much if all distractions in life were removed....
Each skill he displayed that was new to me, had me in a little celebratory happy dance. I was thinking about Jack's 'Personal bests' rather than whether another child of two years old can do it. It was a terrific feeling.
After Jack was assessed we were sent out for coffee for 30 minutes so the team could discuss and analyse the findings. During that coffee break my husband and I were beaming. Jack had done so well. We were discussing how he would probably be the next Mark Zuckerberg or the scientist who finds the cure for cancer. Even our wonderful support lady said "Jack has so much potential, it's just the Autism is in the way".. I knew what she meant. The sensory issues, the fixations on patterns and sensations were 'slowing him down'. If we cut out the 'noise' we could tap into his mind and educate him.
Thirty minutes flew. Before we knew it we were back in the room.
Yes he has Autism.
But he has so many strengths. Lots of potential.
I said "I am ok with the Autism".
And I am. It's hard. But I am. It will be hard. But as a friend texted me the other day "... it will be worth it".
They kept checking how I was reacting.
I was fine.
His development is overall moderately delayed.
I was somewhat fine.
Until it came to me. My well being. How was I going to cope with this life? I am coping fine. But the realisation that I am a huge part of this equation. That anyone in this situation needs to be helped. The paediatrician was quite adament that I accept all help available. Not that she thought I couldn't handle it per se. But this isn't the 'norm'. This situation of having two children with special needs of two completely different types is not a typical experience. The amount of therapies, the variety of equipment needed, the specific attention needed for each child (and not to forget Evangeline who needs attention too amongst all this hoopla) That is what broke me down a little...
I liken it to being at Sizzler. I have a plate and someone else is filling it up. They keep piling it on. Most of it is yummy and delectable, and there is a few items I could do without, but I will swallow it all down eventually. That is the thing: It is overflowing, but I have to remind myself I can get through it, I just don't need to eat it all right now. One bite at a time.
This week I do feel overwhelmed.
But I know that in the following weeks I will get my mojo back.
Then months later I may feel overwhelmed again.
It is going to happen. I am ready.

*disclaimer: I am lucky. I know this. I am so proud of my children. I am lucky to have them. I am grateful for so much. But this is me, being honest, truthful and raw.

1 comment:

Christina said...

Autism sucks, but it just makes up part of who your boy is. And I think it just makes them ever so much more special and frustrating as well but hey, you cant always win!! You have a gorgeous little boy there .. his smile lights up a room . . and just think of all those girls he will be charming in a few years!