While we wait. Once again I consider what the future holds. Assuming you have watched the video of my sons condition, you will understand what I say next. (See his video here https://thisisit.blog/2017/10/15/no-more-boxes/)
What happened to him is something you cannot describe with words. To see it is to believe it. Even then, I have had people say it is unreal.
My mind goes round endlessly most days. Who only knows what Kades brain is doing. The affects of trauma, too complex for most to bare considering. Instead we hit a wall of people yet again not understanding his needs. When they are failed to be met this is when things spiral downwards.
When you have a child that has a medically “complex” condition and watch them being failed time and time again it becomes increasingly frustrating. It will be five years this October when I realised something was wrong with my 11 year old son. He will be 17 in November.
Children like him, if treated immediately with appropriate input, could potentially be well enough within months. Instead they are written off as psychologically unstable.
It took months for a referral to come through for psychology however now we seem to have been forgotten by that department. It will be a year this September since he last saw psychology. Still I reach out for help and still, we wait.
On his return to school after lockdown Kade became overwhelmed and has not attended school again. Despite being eager to learn accessing his education is difficult. He needs one to one support which he gets from his online private tutors that we pay for ourselves. Consistency is key in these children’s lives. Dropping in and then disappearing causes more trauma. Don’t do it!
It took over a year to secure immune therapy for my son. Five days after his first ivig infusion he showed signs of getting better. The treatment was continued for 15 months. Suddenly due to a “national shortage” his treatment was pulled. The end, full stop. No more.
Pumped full of blood products for 15 months my son is told it has most likely been a placebo affect. Consider the trauma on him right here. What does that do to an already mentally fragile person.
Not to be disheartened I once again think out side of the box. The one we are all so guilty of sitting in way to often. I suggest a dog of his own and his eyes light up. When out interacting with my mums dogs he is visibly lighter and brighter in him self. The weight be carries on his shoulders melts away, if only for a short while.
For me the wheels never stop turning. Every day is consumed by what can I do to make this better. Like other parents of children who have battled through childhood illness and the trauma that goes with it, my brain rumintes day after day. Nearly five years have past and I’m not ashamed to admit I’m tired, then I think of my son and I consider his pain and mine is nothing compared to what he has been through.
One of the most important things I have learned along the way is that many people will not understand the problems a child will have when they have had a disease that has affected their brains. For most it is purely because they have not experienced the affects personally, they simply cannot comprehend. A broken leg is far easier to understand than a broken brain.
I have an old fracture in my foot and it’s playing up, years later it still hurts occasionally, when it’s sore it distracts me, makes me quicker to lose my patience etc. You can understand this right? So please understand that when a child has had their brain broken, the bodies most complex organ, the affects are real physical anomalies. Behavioural, sensory, fatigue, coordination issues, poor executive function, the list is very long and complex. Please do not label them as lazy, fussy, messy, disorganised, angry children. What they really need is time, love, counselling, rehabilitation and most importantly understanding (along side approproste medical intervention)
So for now I have decided the next path we venture down, I am hopeful that when we find the right dog it will be exactly what my son needs. We will turn another corner like we have a million times before. This is only temporary and once again we will get there, but for now, we go this way.