Sep 20, 2009

Trying to grasp this week....

This last week has left us reeling. Decisions had to be made, adjustments had to be made - and it's a bit hard to get a handle on it all.

Last week I saw a few members of E's "team" who are helping him with his anxiety/sensory disorder. They have communicated to me that this will be a long term condition and that it's not going to go away or be treated in the next few months. He will get better, but slowly. It was also explained to me that his SPE is like the "world is screaming at him.". Poor kid.

This means that Daz and I have had to step back and look at our life and where we can make it easier for E and for ourselves. We've managed to avoid the shopping centres and other places with "drone". If we need to go somewhere like that together - then he stays with my Mum if she can have him, to save him from freaking out. My SIL has been picking my daughter up from school, because EVERY time we go there, it's such a trauma and he freaks out and then when it's time to leave, he's screaming and crying and carrying on.
Then there is church. We go every week - we are very involved there and we are often there from 9am - noon. And E can only stand it for so much, he can only stand listening to his Ipod and having his industrial earmuffs on for so long. Then usually about 2 hours in he starts whinging, crying, screaming, freaking out, hyperventilating. Then I would have to take him out, and sit with him trying to calm him down. The quieter place would eventually have it's desired effect, but that meant I was missing out on the teaching part of the service.

Now the quiet room I used for calming him down is being used for Sunday School - which is so good!! We definately need a place for the kids to go and learn in their own style, hang out with each other etc. Unfortuntaly E does not like the Sunday School teacher. He expressed this last week with a definate "I don't want to play with HER." - he has never expressed dislike of anyone before, and we don't take this lightly. He wouldn't even sit with ME in the sunday school room - he just wanted to leave. So we ended up sitting in the only place available... outside the toilets on a cold floor. The room was echoey, adding to E's distress and it was not a fun morning.

Usually by the end of the morning I am so irritated and tired and sick of trying to calm him down. My own irritation then contributes to his anxiety even more and we end up going home - him screaming and melting down.

This happens every week, without fail.

So this week we had to really evaluate this scenario and made the difficult choice of leaving our current church, and go to a place that had the facilities to cope with EJ. We resigned officially on Saturday night which was so hard. But first and foremost, we are parents, and what is best for our child is not going to a place that will cause anxiety. I have to protect him as best as I can until he is equipped to deal with this better.

Our new church, we have been going to every Sunday evening. They have a great Sunday school program, that EJ LOVES and speaks about all the time. They have a jumping castle, cars, DVD's, crafts, playground etc. They give the kids dinner and they are such great carers. E isn't exposed to adult "drone" - loud music and the lights going on and off. He is kept calm in a safe environment that he loves and we get to participate fully in the service.

Last night I had a chat to the co-ordinator of the junior Sunday School and asked about Sunday morning classes - it's very similar to the evening except they have lessons. Very suitable for EJ.

Even if Sunday School wasn't running, I have many quiet places I can take E to calm him down and make him feel safe and relaxed. And I don't miss out because they have TV links to the service, which means I can see what's going on and hear what's going on too!

Not only is this decision good for EJ, but Mop is going to have a ball too! She loves going to Sunday School there, and is very excited about going morning AND night! :) I am sure there are many positives about this move, but I have been going to my current church for almost 13 years running. All of my adult life. All of my married life. I feel like I am desserting my family. It feels horrid. But as I said, I am a parent first and foremost. I can't help it that he has a neurological disorder. I can only help him deal with it and make his world as pleasant as possible until he his ready and equipped to do it himself.

We will see the month out of our responsibilities - we will leave EJ at home where possible and then at the end of October we will officially leave, and start in our new church.

So that's what's happening. We are still in shock almost and feel like our world is reeling. But we will catch our footing and keep moving on - it will just take some time.


Shelli said...

Oh Skip, that's huge and will take some adjusting to. You must be an emotional wreck - it's so great for EJ but so hard on you - a very up and down time for you guys. However, as parents we want our children to be safe and happy so of course we make changes, no matter how hard they might be. You guys are awesome parents and should be so proud of yourselves and your beautiful babes. xxx

Little White Dove said...

What a major step to take. Good luck with the changeover Skip, I can't imagine how hard this decision must have been for you. You are in my prayers xx

Renata said...

That is a major decision - but sounds like something important - that´s for sure.
Your new church sounds fantastic!