Why is everything a battle?

I should be getting a shower right now. We have another Team Around the Child (TAC) meeting this morning. But I lack the will. After a year of fighting to get a personal budget so we can afford respite carers for PanKwake, we have hit a road block.

The same road block that so many families face…IGNORANCE. Despite all the political rhetoric about change and making sure that those who truly need it get the help, the reality is that these decisions are left in the hands of bureaucrats who have no idea what life is like for our children and our families. How could they when many do not have children at all, and even if they do, they are being raised by nannies or attending posh state schools…and almost none of them face the challenge of raising a special needs child…alone.

To make matters worse, they seem to be so tight fisted that you would think these public moneys come straight out of their pockets. What are a few pounds that might allow an autistic child like PanKwake to have a nice day out at the zoo or aquarium? How many of them go into their overdrafts each and every month to provide what their child needs? How many of them find themselves stuck in inadequate housing, unable to move, to give their child the freedom of a garden in which to run and play? How many of them are late or cannot pay bills at all because it was their child or the bank?

Even a simple shopping trip with PanKwake can be challenging. Yet wee do not deserve funding for respite care so that MomKwake can shop in peace and PanKwake play with a trusted, reliable and caring adult?
Even a simple shopping trip with PanKwake can be challenging. Yet wee do not deserve funding for respite care so that MomKwake can shop in peace and PanKwake play with a trusted, reliable and caring adult?

How many of them are up half the night caring for their child? Then up early the next morning to write or clean the house or any of the dozens of things that must be done to care for a child like PanKwake. How many of them live on the edge of exhaustion because they spend hours upon hours in the park with their child to give him the proprioceptive stimulation and socialization that he needs? Do they even know those words?

They are ignorant of all that and more…yet they are entrusted with the futures of children like PanKwake. I challenge any of them…walk one day and night in MomKwake’s shoes…see what it actually takes to care for PanKwake. Then tell me that we do merit their help.

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