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Showing posts from October, 2014

Hurt and angry today....

I am usually a very calm natured person, but this afternoon I was again reminded how little people know and realise what special needs families go through, and I was really upset for a while.

I sent a message to Ruben's, (my neuro typical son) teacher informing her that he would not be at school tomorrow.  The message she sent me back was not only rude but really hurtful as well.  Firstly she didn't even bother asking what the reason was, she went straight for: it's really neglectful (of me), they are busy with assessment and she will not have time next week Monday or Tuesday as they will be busy with final practice for the grade 0 concert and he HAS to be at school for the next 2 weeks so that she can finish the assessments. He is in Grade 0. Further she told me how important it is for him to have a routine.

I'm actually laughing at the last part - she said this to a mother with a son who is on the autism spectrum,  does she even know the term: schedule board. My olde…

Let's try again.....

Oh boy, I'm doing it again, starting a blog.  I'll be honest, it's never really worked out very well for me.  I guess it's because I get easily distracted and bored.  However, this time I'm doing it for me,  myself and I. This year has been really hard on me, and I've decided to start a new blog to work through my feelings and the same time advocate and brag about my family, especially my oldest son, Jacques. He was born with a genetic condition,  we still don't know exactly what, but are hopefully getting closer to some answers.

His current diagnosis is FG Syndrome, however at this stage we suspect possibly, Mitochondrial disease.  We will probably get him tested for Mito next year (it will be the second time he gets tested for Mito, the first test came back inconclusive).

He is going for a bone biopsy as well as a small intestine biopsy to test for both a bone disease and Celiac disease.

After breaking his foot in April and then breaking his leg in August…