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.

JUST SAY "YES" TO DRUGS!

JUST SAY "YES" TO DRUGS!

As you know we have taken the step toward giving my youngest behavioural medication to help him focus at school and control his emotional outbursts. The decision has been a difficult one, but I had to take it under advisement, in the hope that my son would find everyday life, a little easier.

The first day, he was seemingly a different child at school. Settled and focused. By the time school pick-up came around, the drugs had supposedly worn off. However during that afternoon his Autistic traits had escalated... less talking, more vacant staring, his energy levels were through the roof and basically his behaviour was out of control - crying, laughing unable to stabilise his emotions. That night he slept for 3 hours.

The next day I tried to keep perspective on the situation. He wasn't as settled as the first day but still had moments where he was really focused completing all his work. All that week he slept for around 3-4 hours per night. I would take him swimming in the afternoon to try and wear off some of that energy.... but nothing would work. I prepared dinner and bath-time routines earlier so he would spend the early hours of the night in his bed, reading. However it was like his mind was racing. He would play, read and babble for hours on end. I felt so helpless as I didn't know how to help my child. It reminded me of when he was first diagnosed.  This continued all over the weekend too. I was advised not to stop and start the medication as it would interfere with the following week. So by the time Sunday rolled around, my eldest and I were suffering. We were moody, emotions were high, simply exhausted.

 My youngest was attending school, swimming and being as active as normal.... running on 3 hours sleep per night. Some may be wondering why I didn't rest while he was at school ?

Well life must go on. I had domestic duties to do, shopping washing, cooking, cleaning as well as still attending to commitments.  On Tuesday, after attending a Paediatrician appointment for my eldest, and hearing how his right ear drum was damaged from an infection he had two years ago, after given the all clear from the Royal Children's Hospital.... I was on the edge. My son needed a hearing test to determine if his hearing was affected.  Now I know there was an issue as I had been querying this with my G.P for months, but I needed a referral. So I raced the children  off to my G.P for yet another appointment.  When we arrived, I heard that I needed to then cancel the hearing test as my son had an infection. I didn't know and he hadn't been complaining... but we had been swimming so much to wear out the youngest at the local pool, I wasn't really surprised.  At that point I sent my eldest from the room, and proceeded to sit in front of my G.P. whom I have known for almost 13 years and cried. I just couldn't stop. I begged for answers on "why my child wouldn't sleep?.... who lives like this it's crazy?..... I can't do it any more!.... Why does it have to be this hard?"  At that point my G.P handed me a box a tissues and asked if I felt depressed?  Did I think I needed more medication and go back on antidepressants ?  I stopped crying... looked up at him and said....

"No!  I just need #@*% sleep!"

He agreed with me, (it was a test I think....) and asked if I had any help?  Again through the tears I just quietly answered "No!"

I reassured him that I was O.k..... but I just really needed some sleep. It is so difficult to stay strong, clear and positive when you are so exhausted you can't keep your eyes open.

He was honest.... he couldn't really give me too much information on the drugs my youngest was taking. It's not his speciality. But he did insist, that I do not hesitate to call my Paediatrician to inform him of what was going on. He also reminded me that this is all part of having a child with a disability, there are always issues to tackle.

I left his office feeling worse for wear... annoyed at myself for loosing it!  I took my boys home and prayed that the youngest would just sleep.... just a little longer tonight.

But of course....he didn't .

It wasn't until the following night that he slept for 6 hours and has stayed on that routine up until last night. (We are back to 4 hours.) It doesn't seem to matter as much though because I have had a few nights of extra rest. He has been more stable at school and is even talking more.... just a few extra sentences and words. The medication is obviously building up in his system, helping to slow down his thought processes.  Next week I will need to increase his dosage. We had started off really low as my son wouldn't be able to express any discomfort from side effects....just for the first two weeks... but then we would need to adjust it more, to suit his body weight.  My fear is that it will throw out his sleeping patterns or rather what is left of the patterns, but I guess I will just take each day as it comes.... and wait.

I have been receiving encouraging words from those around me, trying to hold me up when my legs are weak.... and my closet confidantes reminding me that I will get through this, that storms never last, to have faith and be the strong woman that they know me to be. I am so grateful for these people in my life, but really.... these challenging times must be my responsibility.... whether I like it or not. For only then can I learn and grow stronger from the experience.... better prepared for next time.

Stay Blessed.