You may be thinking, strange question?
In SID Land, it’s not so strange.
Eating is something that ‘B’ has been doing well with, since we told her she would be home-ed she has been able to try new foods, new textures, new colours etc. Great progress!
It’s easy to fall into a false sense of security with SID, you know, just as you think you’ve got on top of something, another ‘thing’ will take it’s place or an old one will spring back up into action, so don’t be fooled into thinking it’s fixed, it just might… there is a small chance you’ve cracked it… but it just might come back.
‘B’ likes to go for lunch on a Sunday at the local Supermarket cafe, a small miracle in itself but that’s another story. Apart from not coping when they insist in putting her chips in a bowl even though they should be used to her coming in by now, but last weekend they changed the shape of the chips. Now to a ‘normal’ child, a chip is a chip, right? Not to an SID child, like alot of children with any aspect of Autism (Spectrum or not) the spontaneous change of the appearance of an up until now accepted food is a big deal. They had gone from ‘normal’ chip shape to big flat ones, needless to say those chips didn’t make the journey to ‘B’s stomach!
This got me thinking, so I have compiled a useful (well I hope it may prove useful) list of things to consider when faced with trying to feed your non-eating/fussy-eater SID child.
1) Texture
Look at the food your child does eat, is there a common theme with texture? Take ‘B’ for example, she is Sensory Defensive, she doesn’t like anything in her mouth for more than a second, she needs foods that don’t require alot of chewing. Hence she eats lots of what I call slimy foods, foods that can be swallowed quickly. She can’t eat tuna or rice without being sick, think about it, they are dry, they don‘t slide down the throat!
2) Colour
After talking to other Mums with SID children, it appears alot of them like yellow foods. I haven’t a clue why. Maybe visually yellow is an inoffensive colour, it doesn’t hurt the eyes? I don’t know for sure, but ‘B’ was definitely a yellow foods girl! I’m happy to report that we now will also eat green foods.
3) Shape
As pointed out above, shape is important. Again, circles seems to be an acceptable shape. Think about this, circles have no edges, maybe edges cause problems in the chewing process? Others will only eat something if it is chopped into tiny pieces, this may be because they have an over-sensitive oral system that can’t handle tiny pieces, because again, they don’t require as much chewing.
4) Together Foods
I didn’t know what else to call this section LOL! For a long time ‘B’ would only eat her food if each component was on a different plate. It is a well known fact that Autistic children will freak out if their foods are touching.
5) Temperature
Again ‘B’ likes all of her food room temperature. Doesn’t matter what they are meant to be, hot or cold, she’ll only eat them when they are at room temperature. Again think about it, bland foods eaten at bland temperatures. Spicy food children may only eat hot foods and never touch cold foods. Ice cream children may only eat really cold foods. Get it?
6) Utensils
Does your child try to eat everything with a spoon? Even things that don’t require one? There is a reason for this, if they do, it’s all about making sure the food goes ‘down the hatch’ without touching the sides! I don’t worry what ‘B’ uses to eat with, as long as it’s not dangerous obviously, it may look strange to me but if she’s comfortable with it, so am I. Look at the plates you use, are they plain, do they have a picture, which one does your child use the most? Shapes and colours of cups are just as important, as are drinking straws. Just be observant and find your child’s pattern.
7) Where to eat
There is alot of pressure on people to make sure everyone eats at the same table for meals. There are so many reasons why this is hard for an SID child.
a) Contamination
Someone else breathing over their foods equates to contamination.
b) Concentration
‘B’ eats more and best when she is in front of the TV. The TV provides a distraction for her so she is not solely concentrating on her food. Without this distraction eating becomes a huge ordeal for her.
c) Eating Habits
Other people’s eating habits, particularly other small children who don’t necessarily have great table skills. Things like eating with mouths open, getting food all over themselves, people talking whilst eating – these are all things that can cause an SID child great stress.
I’ve obviously only really given examples of our own experiences. I can’t stress enough that the key to getting on top of SID, I think, is really get to know your child (inside and out)! Forget about what is expected from society, what the parenting books say you should be doing, what others expect of you. Your ‘normal’ is just a different type of normal to others.
I’m of the opinion that we shouldn’t be trying to get them to fit into our world, we should be looking at how to fit into theirs. Put yourself in their shoes, do you really think they do this on purpose? You know, in your heart, they don’t!
It takes time and patience, but believe me, you will find a pattern. This pattern is as unique as every child that has SID, no two are going to be the same.
Till next time
‘B’s Mum
and in SID land we meet the incoming seasons with some trepidation!
Why?
Changing seasons have a funny effect on our little SID folk, particularly summer to autumn and winter to spring. It’s not just the change in temperature, we also have the clocks to contend with.
So what happens? Bear in mind that SID kids’ brains are out of sync, their brains don’t always interpret the messages the way they should.
Example: In winter you’ll probably see ‘B’ insisting on wearing flip-flops, shorts, short sleeves and insisting that it’s too hot for a coat. If you feel her hands, she’s actually warm and toasty! In the spring she’ll put on her winter coat, button it up to the top, get out her boots and gloves and insist she’s freezing cold.
OK, so it does conjure up an amusing picture but it’s really not that funny. Their internal thermostats are running amok, their external bodies can sense a change in temperature and humidity but the brain is insisting the opposite.
Clock changes in our house take about a month to adjust to, her body clock refuses to get into sync (and why should it, they are after all known as the out of sync children LOL), so we have ‘B’ not only dressing inappropriately, but wanting to do so at the time her internal clock tells her to.
This year is different for us in that ‘B’ is now home-schooled. This at least means that when her body refuses to wake up she can at least let it sleep. In theory this should help as she will be able to follow her own rhythm instead of the clocks! That’s the theory anyway, we’ll let you know what happens in reality.
Till next time
‘B’s Mum
Forgive me for digressing from the usual theme of my posts but I have to get something off my chest.
Last night I think I may have wasted 3 hours of my life… and unfortunately I’m probably going to waste another 3 hours every week for the next 11 weeks!
How? I have been teaching at the local college for the last 4 or 5 years (can’t remember exactly). I got involved in teaching as a way of passing on the knowledge I’ve gained in 21 odd years in graphic design. Our ‘hopelessly out of touch’ Government decided that all non-qualified teachers have to do a PTLLS* course by 2010 or give up teaching.
This course is supposed to prepare us to teach!!!!! From what I saw last night I’m not sure I want to teach anymore. No wonder our kids are leaving places that are meant to prepare them for a career with no idea of what they’re doing…
I don’t want to be turned into an academic. I don’t want to waste precious hours of my life filling out paperwork in triplicate. I just want to share my knowledge to help prepare people to work in the graphic design industry. I don’t want to think until my head feels like it’s going to burst.
At the moment I’m not sure I’m going to see this course through. I’m not a quitter, I love learning, my head is full of ‘stuff’ that I’ve accumulated over the years but this just seems so far removed from what I do and how I do it. I’m not perfect and I’m not the best teacher in the world but I get the result I set out to achieve.
OK so rants over, I’ll get back to some real work.
Till next time
’B’s Mum
*PTLLS – Preparation to Teach in the Life Long Sector
OK, so although school started this week, we haven’t started home-ed yet…
‘B’ needs time… time to adjust. Remember we’ve only just decided to home-ed. I think the reality of it kicked in (for both us) on Tuesday. We were getting ready to drop ‘B’s dad off to do a Mind Body Spirit Fayre, we were loading up the car and I think it was then that ‘B’ noticed everyone going to school (and it hit home). Me, I had to shake the feeling that she wasn’t ‘skiving’, I know it sounds silly, but I did have to remind myself that I don’t have to run around in the shadows, I can stand tall and proud and say ‘we home-ed’ if anyone challenges us.
It was then that I realised how much conditioning has been going on, for all of us. We need time to get our heads out of the traditional educational pattern and get ourselves into our pattern, and that our pattern is going to be ‘B’-shaped! What does ’B’-shape look like? Mmm, kinda random and certainly unusual!!!!
At the end of last week I was convinced I needed to be more organised and get some sort of semblance of order if this was going to work. Today I’m thinking, why on earth did I think that? We don’t have to follow any timetable or curriculum, we can literally just go with the flow…
We’ve already experienced a certain amount of liberation from our previous constraints, in the form of ‘B’s newly opened willingness to try new things and her new found ability to be able to get into the car and actually go somewhere without having a panic attack or not being able to get out of the bathroom until she’d been to the toilet 20 times (and then if she lost count we would have to start again or in most cases just give up and stay home). We went to Southwold’s Maize Maze and had a wonderful time, it’s been sooo long since we’ve been able to go anywhere further than 20 minutes away, in fact, that outing has turned into one of our first home-ed projects, she took loads of photos and asked loads of questions… this is a way she enjoys learning…
’B’ was also a stickler for routine, as with most children with any type of Autistic tendencies. Again this hit me out of the blue, a new word for us… spontaneity. Yes, we have achieved this a few times already. I think I’m beginning to see the full impact of the stress she’s been under, I knew she struggled with school, but I’m seeing a whole new ‘B’ emerging already, things can only get better right? I’d rather have a happy laid-back ’B’ than the little girl that was around this time last year!
As my title says, Rome wasn’t built in a day… we just need a little time.
I’ve a feeling we’re going to be OK.
Till next time
‘B’s Mum
It’s been a hard few weeks. We’ve talked and talked and talked about it. We’ve asked family and friends about it. In some ways it’s been both the hardest and the easiest decision we’ve ever had to make…
What am I talking about? Home Ed.
‘B’ has struggled with school ever since she started going. Without going into any of the finer details, we came to the conclusion that no matter how many meetings we have with the school, no matter how many times I try to explain it (and believe me I’ve lost count of the number of times I have tried to explain it), we just aren’t making any progress at all.
I don’t think ‘B’ can take another winter like the last 3, I don’t think I can either. What everyone seems to forget is that I’m the one who has to pick up all the pieces when it all goes wrong…
It didn’t help that we both had different thoughts on the subject. Ultimately we both want to do what’s best for our daughter. It’s a huge responsibility and it wasn’t a decision that we made lightly.
We’ve started looking into Home Ed a long long time ago, I guess I always had a sneaky feeling this was the road we were going to take at some point. So now we have, what does it feel like? In a word, liberating.
We have tried to fit our square peg into a round hole for so long, now it’s time to make a new hole, one that’s ‘B’ shaped. On those days when she can’t bear to wear any clothes we’ll be doing lessons in her PJ’s!
‘B’ is excited, I’m excited, Dad is wary! He learnt along time ago to trust my instincts, he knows we‘re going to be OK.
We’ll keep the Blog updated with how things progress. I’m now off to write an Educational Philosophy Statement for the LEA, I wonder what I’ll put in it?
Til next time
’B’s Mum
The few times I find myself mentioning that my daughter has SID to new people, I have found the first thing they say is: ‘I’m so sorry’. Why are they sorry? I’m not…
Maybe I’d better explain a little more…
It’s obvious from that response that people think there’s something wrong with my child. Actually I like to look at it another way.
My child is unique, sure she has problems but hey don’t we all? I have a relationship with my daughter that is so strong, we know each other so well that we don’t even have to speak to know what the other is thinking. I treat her as a little person, not a kid, a person. I ask her opinion, I respect her thoughts. (Now just because she gets a say in everything doesn’t mean she rules the roost, what it does mean is that we respect her opinions and take that into consideration, after all she is part of our family). She has a totally different perspective on things, she takes notice of things others take for granted, she opens my eyes up to all possibilities, she has a beautiful heart, she truly cares for people. We don’t ignore her. In truth, we probably learn more from her than she does from us.
This has caused some of her friends to envy our relationship because they wish their parents took notice of them in the same way. We are not perfect, we are not always right, but we do work together as a family.
Why on earth would I want to change her? I love her just the way she is, as time goes by she is learning how to adapt to her needs and is doing a great job so far.
So next time you come across someone who has a child with any type of disability, and you feel those words forming on your lips, maybe rethink it: have empathy yes, but please don’t feel sorry for us. We are truly blessed with these children.
Till next time
‘B’s Mum
I really don’t know why I bother sometimes. I’m sooo fed up with having to explain SID over and over and over and over… for those of you in the same boat you’ll know exactly what I mean.
Why won’t somebody just realise that living with SID and having SID basically in a nutshell means life is hard work, every day is hard work. Having SID is not a game, it’s not about getting your own way, it’s not about being picky…
For anyone about to slide down this slippery slope we call SID World, here are some things you’d better get used to:
1) Explaining SID and it’s impact on your child’s life sooo many times you begin to question your own sanity.
2) Expect no help ’cos that’s basically what you’ll get! Certainly not in the UK anyway.
3) Get used to the idea that no-one really even understands what you are talking about.
4) Prepare yourself for spending alot of your precious time running round and round in circles.
5) Stand your ground, if you’re convinced it’s not Aspergers don’t accept any other diagnosis.
6) Be prepared to defend yourself as to why it’s not Aspergers, oh yes, this will happen.
Till next time
Blessings
‘B’s Mum
