Today was no exception .. The Meltdowns came thick and fast ... hands over ears when he was screaming ... kicking ... biting ... and generally thrashing about ... all because his Physio who checks his measurements at our Pre-Botox meeting ... so they know how much they can inject into his tiny little body ... It is something that we can't not-do ... It is a necessity ... Something we have to grin and bear ..
Today however was the first time his Cerebral palsy team at PMH found out that he also has sensory processing disorder ... and the reaction I got was a chorus of "Ahhhhh that makes soo much sense now" ... They have known his weak little body for 3 years now ... This will be his 7th Botox session!!! It has gone soooo fast!!! And now .. we all understand why he stresses out ... Why he sets off his asthma through stressing out and screaming the hospital down .. Today ... In their eyes ... IT ALL MADE SENSE!! It wasn't just a child .. scared from all the hospital visits ... from all the needles .. the poking .. or the prodding .. It was a little boy with a REAL DILEMMA ... They asked me how I wanted to approach it ... And my honest answer was ... I DON'T KNOW!!! I don't know how I am supposed to approach his anxieties ... I usually promise the earth or distract him with angry birds on my phone .. which works for about 50% of the treatment ... but today NOTHING WORKED... and they UNDERSTOOD!!!
I felt like my parenting wasn't being judged any more ... that he wasn't being judged as an angry little person...
It all made sense!! And it would never be ok ... And they were ok with that ... Even if he wasn't ..
On the News tonight there was a little boy that hasn't eaten for 18 months ... I thank my lucky stars that we are over that ... He may only have a handful of safe foods ... But I know what that poor woman is going through ... I know how heart breaking it is ... And I know how little help there is out there for everything that we are going through ... It is like trying to lick your way through an Ice sculpture to get past ... you know you can go around it (by eating) but your brain just wants to keep looking through ... and then your tongue gets stuck .. Just like in all the kiddy movies .. your stuck .. half way through licking your way to the other side of the ice sculpture!!
We can only go up from here you know!!! With the food aversion ... with the pain aversions .. with the sound aversion .. His asthma ... His Cerebral Palsy ... His Anaemia ... With everything ... There are people that understand!!! I can't wait to start sensory integration therapy!!! It can only get better!!!!