Tuesday, May 18, 2010

Ascending ....



Well again the autism rollercoaster has continued taking us for a ride.
This time however it seems to be heading on the upwards once more.

As I've mentioned in the past my son's behaviour seems to improve then worsen then improve then worsen. Right now, if we are on a ride - we are heading upwards, past the pink fairies, the unicorns into a wonderland - he is that good.

My paranoia about this rollercoaster ride is honestly so strong that even writing this is hard, as I might break the spell. Mentioning it to someone might jinx me and I'm touching wood constantly. That may sound like a joke, but in all honesty I do feel like I shouldn't mention it, like it's some cosmic mistake that will be rectified and taken away.

It began just before we went to Brisbane. Before that he seemed quite unhappy, on edge, very frustrated and touchy. Even if you asked him to put on his shoes he would throw them down and say 'no!', then go and pick them up and put them on. Everything had to be protested against, even small things would be so frustrating he would hit the wall as hard as he could and give you a look that pretty much said **** off. He didn't seem unwell, he was sleeping, he was eating. I had no clue what was bothering him. The only thing I could really do was hug him when he seemed upset and honestly I think it soothed me more than it did him.

BUT, then something happened a week or so before we left. He stopped, started smiling, didn't seem so frustrated and seemed more relaxed. Since then we have pretty much had a very relaxed happy boy who seems at ease with most things, can listen and you can trust. He loved being away, he didn't escape, run, or hit the deck once. He has been talking more. Smiling more - we even have been a bit lapsed in locking the front door as he hasn't tried to do his escape from Alcatraz routine in ages.

So it's been making the think. As much as I know with this what comes up, must come down, there are somethings that will never be again.  Things that regardless of the ups and downs haven't reared their ugly heads in so long that I feel happy in stating they are gone for good. These are all things I thought would never improve. Things that I am so proud of with him for achieving and I'm going to focus on these.

1. Middle of the night romps! WHOO bloody HOO. Bugs can still take a long time to get to sleep but gone are the days where he would wake up at around 3 am most (5 out of 7 nights) and not go back to sleep. This was also a time where he couldn't be trusted for 3 minutes on his own without something horrible, usually very messy happening, so there was no dozing for me during this time.

2. Nappies. WHOO bloody HOO HOO again. I have no idea how we finally toileted Bugs. It's kind of as though something just clicked one day after months of me not really knowing how I could make him understand what was required. His understanding of what is being said to him has improved so much. He still struggles with some concepts and even requests, but he usually gets it, especially if PECS are used. Once he was toilet trained we have rarely had accidents and he has never wet the bed.

3. Iron clasp wrist holding. From the time Buggies was 2ish to about 6 we pretty much wouldn't go anywhere unless I either had a steadfast hold of his wrist or I was carrying him. The main reason was that if I let go - he would go. Usually without a clear objective. He would just run. Kind of Forest Gump run. Two particular things to mention here. Firstly picture my father, who can't run very well, running down the footpath yelling while said child is giggling and running as fast as possible down footpath. Me screaming after them as child runs out on road without looking or noticing the car slamming on it's breaks to avoid hitting him. Child still doesn't see car and continues to run until mother, nearly having heart attack, finally catches up. Mother crying, child giggling, grandfather now the one looking as though they are having a heart attack.
Secondly, 5 year old child running through local shopping mall while not as quick mother chases kid. Not pretty. Heads turning everywhere, happening most times child and mother ventured out.
Those days are gone!. Now I can actually walk without holding his hand. Mostly we hold hands though, but gentle relaxed hands, not hand over wrist.

4. Words!. Once apon a time I NEVER thought I would hear any words spoken by Bugs. He had absolutely none for so long. There were many times when I would be a part of a group with other parents who had kids on the spectrum and my child was the only one who didn't speak at all. It was quite hard. It was one thing to take your child to daycare and your child be the only one who didn't speak. The only one with an aid (if you could call them that) and the only one who was sent home with a communication book each night explaining all the 'difficulties' the staff had been having with your child that day - BUT - it was another type of heartbreak when you were sitting with parents who you thought had kids like yours. Kids on the spectrum, kids with the same diagnosis - yet yours didn't understand what was being said to him as well as the others and yours certainly didn't speak any words. It felt as though even with the kids who had the same label, your child was worse. Nowadays we don't have conversations, we don't have sentences - but we do have words and they are the sweetest sounding words you will ever hear. Words like - no, Mum, school, trampoline, drink and bus.

So, forgive me my rather long post, but I'm trying to remember that even though we have ups, and downs we have come a very long way and will continue to do so. I'm so proud of you Buggy Boo.

2 comments:

  1. hi jennifer
    I have found your blog very interesting
    alot of what you talk about reminds me alot of how I felt when my son was small I was terrified of taking christopher anywhere with me. There are alot of things you have said in this post that strikes a chord with me as I often wondered if christopher might have been struggling with over sensitivity to certain things like woollen anything, buttons, loud,hot and cold noises ect he was never diagnosed with anything and he has changed with the years,he is now 12 and alot more settled but since having my daughter and watching her development and how easy she find to pick things up like dressing herself and her most of the time easy going nature just seems to highlight all the little things that Christopher and I struggled to deal with when he was a little dot.
    I am not sure what the point of my post is I guess it is just to say thank you for sharing
    kindest regards
    Narelle

    ReplyDelete
  2. Hi Narelle,
    I don't know how I missed it, but I just saw this now.. umm ashamedly a year or so later.
    Just wanted to say thank you so much for your comment.
    Jennifer

    ReplyDelete