Most people do not realise how difficult our lives became when my son became disabled. Back in February 2006 when Hayden became disabled one of the many things he was left with upon recovery were significant behavioural issues. We lived with these behaviours initially hoping that they would recover and they would moderate over time. Unfortunately this did not happen and in fact the behaviours have become harder to deal with as he has got older and stronger.
Now for our own sanity Hayden is medicated for his behaviours but the challenge we have been trying to overcome has always been that he does not swallow medication. Especially tablets. Everything has to go through his peg.
Last week I was told that Hayden's behaviour is at the extreme end of things and that the consultant we see has never seen behaviour like it. He has concluded that Hayden needs to be referred on. Also that Haydens behaviour is like one of a kind certainly in his experience and finally that Hayden should have it noted that his behaviour is his most significant disability, even more significant than the rigors of cystinosis.
Phew..... we live with this behaviour everyday and most significantly the unmedicated times of before school and after school. It is exhausting and stressful. Last week when we were at the appointment I was unwell so was at a low point. So it sure felt good to hear that his behaviour has been put in perspective and it is not just me the parent and professionally the teacher over exaggerating things.
Fingers crossed that something more can be done for use before we can no longer cope with everything he throws at us.
So while I have written a lot of doom and gloom there are a few moments of spontaneous fun....alright this is when he is medicated.....
(credits....kit is Berry Delight by Caroline B at Nuts4Digi)
We very belatedly here are my pages. I am actually very excited about the way that they are turning out. I love bright colours and these pages do not net me down. I know it is a long way to go but I can't wait to see what they look like in the book I will get made at the end of the year.
The products I used are Life 365 in a box and Life 365 Hodge Podge 4 from Weeds and Wildflowers, Over the Rainbow by Lindsay Jane Ray of Sunshine by Lindsay Jane
It has been a few weeks since I have time to post for Wordless Wednesday but here we go. Today you can see my disabled son scared of electrical storms at night. We have been having a lot of them lately. Thank fully he is not unhooking himself from his pump and overnight feed to walk down the hallway and tell us that he is scared.
I know I am a little late but the month not sooner finished and the school holidays were over. Once again we were back into full swing.
12 days of March were school holidays. The end of term 1 which unusually had 11 weeks in it so everyone in our house was really tired.
My husband and I had for the very first time 4 days and night with no children at home. We really didn't know what to do with ourselves.
Did you know that when you fly around New Zealand domestically your 12 year old is classed as an adult but when flying without an adult they are still a child. As if I did not know that my lovely 12 year old is still a child.
It rained finally. After many months without rain and having to buy rain twice we finally have day enough rain. Now all I can say is that we don't need any more...50,000 litres of water tanks are now full. So rain please stop.
The ride on mower is now officially irreparable. So now it takes 3.5 hours to hand mow it and because it is raining the grass is growing ....fast. Here is my grass after it being mown.
My little boy who is 9 spent his last day at his school. He is moving to a new school. It was a sad and exciting moment for him.
The winter sport, hockey, trials we held and teams names with both my children excited about the teams they are in. What hockey means for our Saturday morning is usually two games at two different destinations. We are left charging around Auckland.
My term of 0.5 work (2 1/2 ) days a week has turning into 0.7 days (3 1/2). This is good news as it gives me steady work without being full time.