Im one of those people who feels better once there is a plan in place. Deep down, I might know that the plan wont come to fruition - but oh I do like my researching and piecing together the hypothetical. I once put together a complete summer vacation to Prague in 24 hours simply because Charles had mentioned that he might have a conference near there and he had always wanted to see the beautiful architecture of Prague. Two days after we had this conversation he said the conference wasn't on, and I had to cancel the flights and apologise to all the lovely B&B People who responded to my emails.
We are getting to the stage where I am feeling like we have a good plan in place for Sebastian. No results yet, but there is a plan. I feel relief. But I am also wondering how many people I have ticked off in the process.
Whether your child is special needs or not, parents need to be their child's advocate. No one else is going to do it. With a special needs child - you are constantly walking the fine line. Do parents of special needs children come across as overly aggressive? Do we need to be?
I am very aware that teachers are overworked. THere is nothing 8.30-3.30 about their job. And I don't like having to send emails that will add to their workload.
Never once has any teacher Sebastian has had made us feel like we were taking up time - but it's always there. You realise the teacher doesn't mind going the extra mile, but doesn't have to for everyone. It's you who is asking more of them....again. Please fill out this report, please take 10 minutes to talk to me. Please keep an eye on my child. I am asking more of you than other people do.
This week someone described me as "very aggressive". When their confidant said, "Tess is a really good friend of mine", they started to backtrack. "Well she has to be, otherwise her opinion wasn't going to get heard."
I cringe when I hear myself described as aggressive. I don't like being aggressive. I don't like creating extra work for people. But if being aggressive is what it takes to get answers and action, I will. I will apologise every time I step on someone else's toes, but I will be heard. If I am not my child's advocate, who will be?
KINDER THAN NECESSARY DAY2
I wasn't allowed to leave the house today, and without the internet the kinder than necessary might have been tough. I wrote an email to a blogger and shared that I had read a book he had published years before. This blogger is not well, and he wrote back, pleased that strangers would remember his words long after his time on earth is done.
Without a doubt, Tess, you are doing what is right - aka "the right thing" - for Seb. As you say, "If I am not my child's advocate, who will be?" Recently, I watched another mother of her young son, arrange for a specific medical test that no doctor would recommend. As it turned out this particular test's results has provided insight into her son's condition and as a result there is hope his situation will improve with treatment. So, carry on, darling. You do what you are doing. Seb is in good hands.
With much love, Mum/Maureen/Mo/MoMo. xox
Posted by: Maureen Lyons | January 20, 2014 at 12:21 AM
I'm not sure aggressive is the right word here. Assertive maybe? Either way, you're right. You have to be your child's advocate. I am mindful of walking the fine line between being known as his advocate and "THAT mother."
Posted by: jill | January 20, 2014 at 03:48 AM
Tess, you are doing a wonderful job. You are right you are Seb's advocate and you always will be. I work with families of children with special needs everyday and have listened to their stories, much like yours. I'm not sure what support there is in Hong Kong, but in Perth there is a charity devoted to supporting the well being of parents of children with additional needs (no matter what those needs are). Having seen Sebastian only a few times over the last few years it is so hard to comment on how he's doing, but from those few times we have spent together he has left a lasting impression on me and Hugh - he is a generous and caring sole. Hubie still counts Sebastian as one of his all time best friends. It would be great if we could encourage a relationship through letters or email or something - especially if you think Sebastian would appreciate it? Hugh starts high school in a few weeks and I know he is apprehensive - new school - new friends - new everything. Would you like me to ask him to write to Sebastian? It might help them both through this next transition. My thoughts are with during this challenging time. Lots of love Lucy
Posted by: Lucy Moran | January 20, 2014 at 05:06 AM
I think pple often misuse the word aggressive when they really mean assertive. Your is only Mommy and that means being his one true point, the person who advocates, argues and helps their child. And it knows dearest friend how down right exhausting that can be. It is mentally exhausting. But Seb is worth more than anyone's opinion! And I ALWAYS think you are amazing! He is lucky your his Momma.
Posted by: Charmaine | January 20, 2014 at 11:06 AM
Map for my tupos:
"His" not "is"
And "it" knows...should have been "And I know"...
Reading that made me think "it puts the lotion in the basket"
I am dreadful, I know
Posted by: Charmaine | January 20, 2014 at 11:09 AM
TYPOS
&/&/)!'^]!¥
Posted by: Charmaine | January 20, 2014 at 11:09 AM
Hi, Tess. It's been a long time, but I saw a link on Facebook and ended reading a couple of your posts. I really appreciate your honesty here and I thought I'd chime in here with the perspective of a teacher. From my experience, it is parents like you that make our jobs easier, and these are the kids and families I am more than willing (and wanting) to go above and beyond for. You are seeking support, looking for answers and advocating for your son. It's our job to join you in that. It is when parents choose to deny or avoid realities that it makes our job hard. Press on! Love from Canada!
Posted by: Harmony | January 26, 2014 at 08:11 AM