the High's and Low's.

(chapter 11)…

School holiday time has arrived yet again; facing the prospect of what type of things we could do? I would love so much to plan a great get-away for A.J. and us, although unfortunately the reality is that it’s not possible. So we are hopefully going to arrange a few day outings to break the monotony!

Poppy has planned to set up the new trampoline that we have purchase with the hopes of helping with over-stimulation issues. This was suggested by his O.T.

Planning out each day and working to keep A.J.’s rigid routine in place, as the ‘relaxed state’ he so easily settles into can become a struggle to keep school routine mode.

So many little things have made the time such fun with visits from family and friends to distract from the boredom and with small group activities planned to not overload his sensory issues.

A few meltdowns occurring, with the latest action being word repetition to comments we state while trying to calm him down.

So precise and matter of fact, with the belief he has the right to repeat every comment back to me, although in a more forceful tone than I stated to him.

I guess when you look at the literal sense he is actually right. I have to think before I say things, as innocently stated as they are, perceived by A.J. in the belief that he is learning from me, therefore feeling he can repeat anything I say and do, how can I be angry at his comments.

Holidays! As quickly as they begin they come to an end. How can it be, when I plan a special day, just with John, it seems there is no time to really have it happen?

Tomorrow I will do it, just the two of us whatever he wants to do its fun that way, probably a treat at the park, reading a book and then the Sony for game time.

Arrrggghhh!!! …………How is it possible to stay calm and reasonable when the meltdowns and the repeated back-answering just go on and on! I knew this would happen; I have to go to work and then I really should be at home as well. The routine has completely gone out the window and now while trying to establish some form of organisation into what seems to be total chaos, has now escalated into becoming a battlefield of explosive word slinging.

Stop, breath, walk away, then maybe he’ll calm down? Now, I've been told that I don’t care for him, that I shouldn't make him clean up his own mess, that I shouldn't make him be my slave!

Slave? How is asking to respect his items and put them away, forcing him to be my slave?

It’s at these times I find it so hard to deal with! I know overall it’s not personal, although at the same time the out-lashing of words always seems to be directed straight at me!

“They are for my world, I can’t move them now. I built them special to protect me. Go away or you’ll break them with your eyes”

I suppose it’s because he feels so comfortable with me that he feels he can release his frustrations and anxiety at me, therefore seemingly that I am the target, not just the buffer of his release.

Locking himself, metaphorically, in his room snuggled up inside his mattress walls beside his bed, locking away the frustration he has caused, he goes into silence mode, not talking or looking at anyone. This period of the cycle can last for hours ignoring the world around him focusing on himself and getting back to his calm mode.

So now we just wait!!!!!!!

New day, new beginnings! It’s the only way to go.

Forget the negatives, and focus on the positives; facing forward and in the direction of the things that we can change; acknowledging with praise the progress of all positive achievements, no matter how small.

The greatest achievement we have overcome these holidays has been to cease the face rubbing and shirt sucking, A.J. has worked so hard and the focus we feel is the introduction of the trampoline; he just loves it!

I am only hoping that now as we prepare to return to school that this issue doesn’t reoccur, while coping with stresses in the school environment!

Preparing for back to school!

Only days before the new school term, just having discussions to setting-up the school routines have caused a meltdown. This was not what I wanted to see; deep breath, break-time, relax, regroup and try again!  We get him through the day and settled down for the night.

As the days get closer I am also worried as to how things will pan out at school, are they going to start with a settled routine, or will they be forced to instigate this ‘Wham Bam’ routine and how will I be able to control the fallout effects?

 

School morning arrives, up and dressed, breakfast and done; now time on the trampoline just to relax the senses as discussed by the OT.

Off to school. All seems good, only the day will tell.

The first two days of school have ended well; other than mild sensory issues there have been no concerns. The teacher had even commented in the communication book that A.J. was settled and willing to contribute to class discussions; a great start to the term! ………

…Well done A.J.!!!   

I've noticed evidence that his sensory and over-stimulation issues have caused the shirt rubbing to return, however mild the evidence is.

Again and again the same pattern continues minor meltdowns after settled school days so we take A.J. for a bath as this works well to settle him down. The nights end settled with talk time while he helps Poppy with the dishes, happily talking about anything and everything.

Another great day at school, everything is smooth sailing; it’s almost too good to be real!

The afternoon break-time, then homework, although he tried to resist, he’s still happily settled doing the days allotted work.

To lighten the mood, I found a ‘Kids Jokes’ book so we sat together and began to read out the jokes from the list of items, first farm jokes then school jokes. Forgetting A.J.’s ‘literal thinking’ mind, I then spent the next half hour explaining each joke after he read it out to me! So cute!

 Another week with progress, each day school reports the same; settled, working well, joining in with class. Then suddenly a note came home in his communication book --

“A.J. was frustrated with misunderstanding his schoolwork and threw his book on the ground. Although afterwards he took the book and finishes the work without being asked to, unfortunately he has a detention.”

 I cannot understand how they still don’t get it! How does it get to this point?

Why, is it that he is not being monitored to some extent to see that he is struggling, before the melt-down occurs! They know he struggles with asking for help!!

Even after explaining that A.J. doesn’t understand the concept of “Detention” believing instead it is just an area he can go to calm down and be more settled with less noise and distractions.

Another meeting at the school; a breakthrough light-globe moment from his teacher!!

……………. She finally gets it!! 

All of a sudden everything has fully fallen into place for her; she has a total understanding of what A.J. is going through after doing a course in regards to anxiety and stress in children.

She admitted they had not put any different routine in place being so close to the end of year; and the top-off highlight, A.J. is requesting to remain in class for all day sessions.

I am so amazed; as each day goes by with another positive ending, I almost think I’m dreaming and the bubble is about to burst; I’m just waiting for the bang, crash!!!!..............it didn’t come.

Being pleased with the outcome for this final school term, it has A.J. actually finish a school year on a high in a number of areas. Such a great result for all of us to begin the Xmas holiday break.

Although being so pleased with this progress, I am still aware that the journey will all begin again in the new school year; when once again we face a new teacher with a new set of rules and a new set of expectations, and with the aftermath of this year’s fiasco I am aware that these demands will have to be put into place in some form, although I refuse to allow A.J. to be placed in any situation I feel will not be of benefit to him, just to suit the school.

Trying to put things into perspective, the reality of it and realising how far we have come, how much I have learnt, how different I now feel, my mixed emotions are so surreal at times.

The achievements and the downfalls endured have all played a specific part in moulding my family and friends to become the united group of people that we are today.

Never would I have entered the idea that after raising my own three children, I would then have taken the path that I did, a path that resulted in the journey to educate myself with the experiences and knowledge I have received that have enlightened and frustrated me in ways that no normal life path would have taken me. 

I know the journey began after embarking on the knowledge that our grandchild had reached the lows of forbidden evils that no child should have to endure at any time during their life, let alone at such a young and delicate age. This is when we decided the right choice was to lift him up from the clutches of this non-descriptive hell to guide, nurture, enrich, educate and love him as he so rightly deserves to with-hold.

The path at times hasn’t been easy; I won’t trying to sugar coat it or make it into something it’s not. At times it was down-right difficult and challenging. Although my determination kept me going, knowing it was the right thing to do…………..and if I didn’t do it, no-one would!!!!!  

Putting on hold many of the dreams and journeys that I had chartered and drafted out for myself; child-free, care-free.

I’m not complaining; I’m grateful for the opportunity to experience such a gift of giving to someone so pure and innocent, I know I will still have the time to have my life, a life that I want to live, and a chance to do the things that I want for me!

I’m not selfish, I’m only hoping to do what anyone deserves and more-so after the life I have lived, generously giving to others before taking for myself. No-one would or should deprive me of this chance if they truly knew me, the person that I am and have always been.

Although for now we still face the reality of having to deal with two more years of primary education and then secondary schooling and what that will mean for A.J.

How am I going to address these recent issues we were confronted with, knowing they still haven’t been properly resolved.