Grateful... ish

We are a controversial lot, we parents with different kids. We spend our lives negotiating, trying to smooth a path through the rocky ground in order to give our children the best possible chances in life. When we find a teacher, practitioner, friend that understands our children and is prepared to work with us, we are genuinely thankful because believe me, we come across plenty who are not. But there are times when our gratitude is taken for granted, that we are expected to accept something sub-standard, as if we are asking for a favour that may or may not be granted, dependant on the whim of the other. The relationship becomes unequal, with the practitioner with budgetary responsibility deciding what they will or won't do and the parent having to ask. The perceived failure to be adequately thankful to those that are employed to help, builds resentment.

I am known to be plain-speaking, or 'eye-wateringly direct' in the words of another. Those I have to work with to facilitate my children's progress and care can find themselves wincing at a strong email, a scribbled 'no thank you' or 'we are not doing this yet' on a homework book, or simply a piercing look that tells them what the journey to school has been like. Trust has to be built in order for recipients to understand that communication is not a personal attack, it is simply clear to avoid confusion. My life is chaotic and so if I can get my point across in three words rather than thirty, I will. I constantly thank people for their efforts and I conceal nothing that I think may contribute to their understanding (apologies for that... I am definitely guilty of over-sharing).

I am lucky at the moment. The relationships I have with staff at both my children's schools are strong and I am able to have honest, constructive discussions without fear that people will dismiss me simply as being stroppy. Every single time I have had to challenge something over the last two years, the matter has been resolved amicably. I have been on the other side of this, as have many parents in my situation, where things have gone horribly wrong and I have had to deal with backs turned at the photocopier, eye-rolling in the school office, the hideous formality of conversations through gritted teeth. It is mortifying. Suddenly the ground beneath your feet shifts and you have to set off elsewhere to build a new foundation.

I once had an enforced involvement with a social worker who I liked very much. We had a good working relationship for several years and got along very well personally. She championed my tenacity when it came to getting the right support for my children, lauded it even, right up until she refused to support my child's application for an assessment to identify the sensory issues that were causing her educationally-disruptive distress. Nothing I could say would persuade her to help and she actively blocked my application; every time I proved that we met the eligibility criteria I was lectured with horrible stories of other families in considerably worse circumstances who were also unable to access the funding for assessments. This is a grubby trick often used by practitioners to guilt parents into getting back into their box and shutting up. But you see there will always be someone worse off than you, always always always, but that isn't your child's problem. If, by abandoning your claim, you absolutely knew that the other families would be helped, that would be one thing, but the fact is somebody else's heartache is simply being trotted out to multiple families to reduce claims and workload. It is a revolting practice. We parents understand the scarcity of money in the SEND (Special Educational Needs and Disabilities) system, goodness knows we are lectured about it often enough, but that is a failure of local and national government, again not the fault of our children. With a heavy heart I requested a new social worker, telling her that because we had had such a good relationship I felt that I did not want to fight her. The new social worker arrived (shaking in her shoes) and, when I had explained exactly what my child needed and why, we eventually gained the funding for the assessment. It had taken me over a year to secure. The assessment and subsequent report cataloguing the severity of the issues is an essential part of my child's Education Health and Care Plan and has directly contributed to the fact that she is still in school.

This is not the end of the story. Before I left the county, the support of my local Parent Carer Forum meant that I was able to attend a meeting with a senior health official and members of social care, in order to work out how to prevent any other families in a similar situation in the county having to go through the same gut-wrenching rigmarole. We wanted to work out how to fill the gap in provision, how to fast-track those in need and prevent other parents from coming up against the same brick wall. My original social worker arrived with her boss, uninvited, and tried hard to derail the meeting, assuming that I was complaining about their service and not that I was trying to make positive change. It was an opportunity to relieve a burden for many families, to improve the prospects of struggling children. Despite the best efforts of those who had attended in good faith, it absolutely was de-railed.

Where I had gone wrong was that I had failed to be grateful enough. The previous help that we had been 'given' (qualified for), should have been sufficient to make me eternally indebted, as many others in a worse situation were not given the opportunity, could not be funded etc etc blah blah blah... By asking for the more I was over-stepping the mark. But of course children like mine have a pesky habit in common with typical children - they tend to grow up. And as they grow, their needs change and therefore the support that they need also changes. So, thanks awfully for the massively expensive (yawn) therapies that we accessed when my child was younger, we were, of course, thankful and they absolutely made a difference to us. But sadly that is not sufficient to see her through for the rest of her life and suggesting otherwise is nothing short of lunacy.

So, let me be very clear to all those practitioners who look upon us with weary eyes; your irritation is our pain. Parents like me will continue to ask, continue to press for the care and support that our children need to have the best possible life. We would like to work with you. We did not make it a battle, you did, and for that we will never be grateful.