Today things have all come to a head somewhat. A week after Sam’s first EPC meeting, and the anger, resentment and betrayal that have been bubbling away finally cooked to perfection. It’s difficult to say that makes me most angry, the complete lack of interest from the ‘professionals’ or the downright dishonesty.
I never, ever thought parenthood would be this hard. Parenting my little boy is one thing; it may well be hard work, exhausting and frustrating but it is NOTHING compared to how hard it is to ensure that he gets the support and education that he deserves.
Y’see, although Sam has complex health issues and is most definitely in need of specialist education, he is NOT stupid. Or unteachable. The problem lies with the TEACHING. He is an individual, just like every child, but unlike every child he cannot learn so well in a group setting where everyone works on one task to achieve a common goal.
He needs intensive, 1:1 support to allow him to access all the opportunities that are available to him. His is visually impaired, has a mobility disorder and severe epilepsy - determining that he is unable to learn simply because he can’t see a picture clearly or because he can’t control his movements well enough to use a switch makes no sense, and yet this is what we have been told by the LEA and School.
All I have to say is this. Shame on them.
But if we sit back and don’t do something about it then shame on us, too.
No family should have to fight so hard for their child’s basic rights, however from chatting with other special needs mums this situation is sadly the normal one. The strain of fighting for everything takes its toll, however we carry on doing it because our children deserve the help. Thank God for social media! Not for the first time, social media has proven to be a hothouse of information and support. With the help and information gained from shared experience we have discovered sources of support that we weren’t aware of.
We’ve discovered what support the local authority should be providing and are in the process of fighting hard for what Sam needs. In the meantime, we are discussing his needs and difficulties with specialist schools far afield from home with a view to seeing what support they can give him; however if we’re too focused on Sams needs, we forget about our own.
Having happy, healthy parents (whether together or not) is key to any child’s happiness; so while all this fighting is going on in the background, we are making special effort to ensure that our health isn’t neglected - not the easiest of tasks with everything going on, but essential.
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