Does that hurt ?

During the last week I have been struggling to work out, what is actually going on with my youngest son. He has been extremely irritable, not coping with school - having to come home early, he's overloaded "sensory-wise", having restless sleep and this morning I woke to his inner elbows and knees joints covered in what I can only describe as a type of Psoriasis. He has very dark shadows under his eyes and is obviously tired, becoming frustrated easily, squealing and head-butting more than usual. Normally, your child would tell you if they were feeling unwell or tired. But for my youngest, being non-verbal and also processing a high pain threshold, moments like these are really difficult. He cannot tell you if anything is hurting. When prompted, he will respond in "repetitive phrases". It is normally his behaviour and eating patterns that are affected first, prior to coming down with any type of sickness. Then is usually a few days before hand. But when this type of "unsettling" display of emotion is reoccurring for days leading into a few weeks, I am tempted to think this is something more. That is, more than just being "exhausted".

Taking into consideration that this school term is 12 weeks long and "everyone" is feeling tired, all children especially those in Prep and Year One are struggling just to get through the day. It really does make me wonder how Queensland Education can justify its school holiday structure for this year, when many of the private schools in Brisbane have already commenced their Term One holidays. Most of my teaching friends are telling the same stories.... the younger children are emotional, tired, distracted, unmotivated and generally drained. It's not just the children either, teachers too are really struggling to stay energized until the end of term. It astounds me how Education Queensland can promote "Queensland - the Smart State" when it imposes such ridiculous guidelines. Not too smart if you ask me. Probably another case, like so many before, that has resulted in a decision made by those in power who have neglected to see that inside of a classroom for years. It happens all the time.
Unfortunately when those on the Autistic Spectrum, are unable to tell you exactly what they are feeling, or understand what is going on with their bodies, parents or carers generally turn to the power of elimination or begin a guessing game. This is basically where I am at right now. My son's overall body temp is usually warmer than other children, so it is difficult to distinguish whether or not he has a temperature, fighting some sort of infection, or if it is a sensory issue. The rash on his arms and legs could be part of this - a heat rash. He is starting to cough again at night, which is suggesting the dreaded tonsils are flaring again! It has only been a few weeks since his last infection. On this note..... the tonsillectomy has to be postponed a month due to private health rules and unreasonable regulations. I have always had private health cover for my children. But since becoming a sole parent, I have to fund these rebates on my own. Changes needed to be made to our policy due to budgeting issues and as a result, new waiting periods were placed onto our coverage. It doesn't matter that we have been with the same fund for the past 12 years. As my son's tonsils have now been deemed as a pre-existing condition, (besides the fact that the infections did not get extremely bad until 8 months ago), we are still under a "waiting period" until June this year. This basically means everything has to be pushed back until then. Our particular Private Health Insurer is neglecting to acknowledge that my son's tonsils are having a huge impact on his sleep, breathing and Autistic traits as well the overall family impact this change will have on my ability as sole carer and my older son. I have had to change appointments reorganise Respite which is now not guaranteed, change all my older son's commitments, all because of this waiting period. Now if I opt for the Public System..... I will have to wait up to 18 months before my son can have his tonsils removed. This is basically why I have opted to stay with Private Health. The Queensland Health System is a complete joke. There is no funding so various departments can help people. Hospitals are running under-staffed. Waiting periods for procedures and appointments to see specialists are so long, it is an absolute shambles. What else are parents supposed to do?

Everyday there is a new battle and new issues to deal with.  Parents and Carers are not coping with the extreme demands being placed on them. The unfortunate thing is..... it is not always the needs or the severity of their child's disability that places challenges onto parents and families.... a lot of the time the pressure comes from the support networks that are supposed to be in place to help.  Funding promised to support living with disabilities that suddenly disappears. Opportunities and the right to Health Care facilities and to professionals, that in reality is not accessible. It is only when you are in this situation, that the truth becomes known.  It is easy for Parents and Carers to give up. Many families move interstate or overseas to access better facilities.  Parents and Carers, even those family members suffering with disability are becoming statistics.  Change is needed !

I guess for my family, we continue to preserve.  Continue to rise to each challenge that presents itself.  I guess you could say that I am quite a determined person.  Strong in nature... yes.... but it doesn't mean that I don't feel the hurt, anguish and frustration of each battle.