RIDING THE RITALIN ROLLER COASTER.

RIDING THE RITALIN ROLLER COASTER.

This is getting flippin' ridiculous now!  Life with my youngest... while experimenting with Behaviour Medication, has been to say the least, an experience I will remember for a VERY, VERY, LONG TIME.

I haven't been able to Blog, due to the extreme exhaustion I am feeling.  Now it could be all the specialists appointments, lack of respite, or the "craziness" of the Christmas season.... but when I need sleep the most, it eludes me. Our family is now on Week 3 on trialling the medication.  Let's recap; Week 1 - youngest sleeping for 3-4 hours a night!, spoke to specialists and have determined that the medication is spiking his "racing-mind" at night making it extremely difficult for him to wind down. Affecting the moods and temperament of his older brother and myself.  Week 2 - managed to get the youngest into a routine of 6-7 hours of sleep a night, but his school are concerned that the medication dose is too low - as he is still very inconstant in his ability to focus.  Week 3 - Bouncing from being so spaced out, slipping in and out of absent stares constantly, biting his nails uncontrollably but only when on medication and spiking his Autistic traits once the medication wears off. We are also back to 5 hours sleep.  But while at school, he is more compliant to complete worksheets and get "desk" work done.

Now I have already had my yearly appointment with Professor Tony Attwood, who has offered interesting insight - as he always does. Our focus will be to follow up with a Sleep E.E.G to determine the function of his brainwave patterns, especially when he is sleeping..... and Music Therapy. I am venturing into a new type of intervention  next year. I have done a lot of research and I think this will offer something we haven't had yet with my youngest.  So in the mean time..... I have a follow up appointment with Professor Attwood and the youngest's Pediatrican, obviously waiting on an appointment for the sleep E.E.G from the hospital, an appointment with the Rehabilitation Physiotherapist regarding his toe-walking and finally another hearing test at the Neurosensory unit tomorrow.  It does seem like a lot but I am trying to wind all these appointments up before December hits.  Besides my youngest never copes too well with the end of the year school celebrations. The Christmas Craziness of school concerts and changes in routines, the preparation of classrooms for the following year; taking down colourful work, moving desks, moving rooms etc etc.  It can be way too difficult for him to cope with as he simply cannot understand what is going on around him.  Over the years it has been suggested that many parents simply finish their ASD child earlier in the term before all the sensory overloading occurs.  That will happen with us to a degree. The yearly  Year 1/2 Swimming Carnival is on tomorrow..... one event my youngest is not going to attend (joint decision between myself and his supports). But honestly, knowing I will then have both my children home for a duration of 8 weeks over the summer holidays, with no respite, all to myself - no breaks, no sleep, no time-out..... I wanted to try and use the next week and a half left of the school term as simply time for me, preparation for Christmas or just take the opportunity to relax.  But.... we cannot all have what we wish for and if my son needs to come home early or have time off in the next two weeks... so be it.

I certainly will not be giving him the behaviour medication while he is at home. I realise I will have a few days of challenging behaviour but I believe he will settle again and I know I can get him back into a routine. Besides.... I think lots of swimming, fun, visits to South bank, Christmas Fireworks, visits to the Beach will be just what he needs.  Moments of 

fun and activity. I know where he will melt-down; shopping centres, crowds, being forced into an unknown situation..... so I will just have to be VERY ORGANIZED and PLAN, PLAN, PLAN!  Well sounds impressive doesn't it.

BELATED BIRTHDAYS, BOWLING and BUDDIES.

BELATED BIRTHDAYS, BOWLING and BUDDIES.

We are all so excited about this Sunday.  

FINALLY.... my family has the opportunity to celebrate the very belated 

7th Birthday of my youngest son. 

It has been a long time coming. His actual Birthday was in April. I had posted about the 

choice my family and I had made to delay the celebration and why.  But to quickly recap....

it came down to "timing."

http://riseuptoautism.blogspot.com/2011/04/happy-birthday-shhh.html

MILESTONES in life can not be assumed or expected when raising a child with Autism. 

The emotions, the memories, conversations, the excitement and understanding of  what a birthday celebration is?  .... just happen within normal childhood development.  We do not really need to think twice about it.... it's just natural.   

But when you have an Autistic child.... it's these simple, little things..... 

that cannot be assumed to just occur.  All that thinking and feeling and experience..... needs to be retaught and most of the time what is fun, exciting and wonderful to us..... is noisy, scary, unknown and confusing for a child on the spectrum. You cannot as a parent,  EXPECT your child will just "love" the whole annual ordeal. To comprehend what a birthday is, what their age means, the singing, the attention and the forced social contact...... it's extremely difficult.

It is incredibly important to our family to create a momentous "Birthday Memory" for my young son. We are following our RDI philosophy.... creating Episodic memories. Information and life experience that he can rely on, drawing information from in the future. 

 These memories, will be used by our little guy, when faced with uncertainty in life based on; events, times, places, associated emotions, and other relevant social knowledge.

A credit to my son, his personality, my family and friends - we have 34 children attending his Bowling Party.  Yep everyone has returned their R.S.V.P !   

"Oh my!"  .... Yes... I do know what you are thinking.... I'm a little scared too.  

But my teaching background has helped me to be extremely over prepared.  

Not every little child who has a birthday party is fortunate enough to have his entire class coming, his teacher, his aides, his respite workers, family and friends. But that is my son's life. We have a massive group of people involved in his development.... it is not just me. We all work as a team and we all play a different, equally important role.  I have always felt quite humbled acknowledging this.  It reminded me of the African proverbs....

"No man, woman, or family is an island."

"It takes a village to raise a child."

So far this week, I have seen my young son, understand and become very excited about his upcoming Birthday celebration. This in itself is a huge milestone.  Something I have never seen.  We have been counting down the days on his visual weekly calendar. He has been helping me writing invitations and then proceeded to hand them out at school. He even assisted his older brother and I in making the party guests lolly bags last night.  We picked up some balloons today, and we have made a Bowling Birthday book... to teach him the process of tomorrow.... and what to expect. He even has a wonderful Toy Story Birthday cake to share.  With such a large number of children and adults attending, some are expecting my lad to be quite over-whelmed...... but you know, I have learnt over the years, that if you expect the worst.... it will happen. So maybe we will just wait and see.

I need to say a MASSIVE thank-you to Chermside Hyperbowl, located in the Westfield Shopping Centre, Chermside.  The absolutely incredible management have been a huge support, helping me to organise this long awaited dream for my son.  Without their kind hearts.... we would not have been able to do this. I know we will be spending many hours, enjoying their hospitality and centre over the coming years.

http://www.hyperbowl.com.au/