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Posts Tagged ‘starting school’

Asperger’s Syndrome is known as an invisible disability and generally speaking from a personal point of view there is a part of it that is. However when I look at my son sometimes I wonder how much of what he does is really invisible, how much of his disability is really invisible. Is his disability really invisible or simply misunderstood or ignored?

J has extremely high anxiety levels. He shows his anxiety via his OCD. He panics with every tiny bit of dirt that touches him or is near him, he asks us, “Do you promise I’m not dirty now,” quite literally more than 50 times a day. He washes his hands constantly, I mean constantly, he’s actually got really sore hands at the moment, his knuckles have all cracked and even started to bleed due to him washing them so often. Sometimes he just refuses to touch things or go near things because he thinks they’re dirty or “germy”. Germy is his new word, his new phobia………………and ofcourse anything at all related to school is school germy. He’s been told by someone , (I don’t know who but I’m guessing it was someone at school because it wasn’t us and he doesn’t see anyone else), that some germs can make you very ill and so he now thinks that if he gets dirty or “germy” he’ll be poorly or could even die!

Another sign that J’s anxiety levels are rising is his chewing, bouncing, flapping and random one or two word answers/sentences. He chews toys, his fingers (another reason why they get sore), clothes and the inside of his mouth. He gets a fair few mouth ulcers due to his chewing. His bouncing and flapping can be due to excitement as well as anxiety however you can usually tell which it is by assessing the situation he’s/your currently in. For example if he was bouncing and flapping down a beach it’s kinda obvious that it’s excitement………..see what I mean?  And his speech can become quite sporadic, he can  randomly say just a word or two, sometimes he’ll make a statement of some sort, again that’s completely random and often if he’s asked questions when he’s anxious he’ll give just one or 2 word answers…………usually yes or no.  Ofcourse when those anxiety levels boil over J often has violent outbursts. :(

J has a social disability. For J, as a 6 yr old child this means he struggles in social situations. He doesn’t have any friends at school, although he’ll play with whoever will play his games with him at playtime. He doesn’t understand why other kids don’t want to play his game everyday, he doesn’t understand that with friendship there has to be give and take and sometimes he has to play the games of others and sometimes he’s going to lose. He came home from school last week on 2 separate occasions with minor injuries that other children had done (a whole other post!), and said that another child had accidentally punched him etc because he doesn’t understand that it’s wrong for someone to do that. He does however understand that he can’t hit back because it’s against the school rules to hit back. He just quite simply doesn’t understand how to “act” in and respond to some social situations.

J has a communication disability. I think the level of his communication disability is often misunderstood. J has excellent language skills, he uses words in his speech that children his age usually wouldn’t use, words that older children or even adults would use. He understands what most “big words” mean, for example at 3 he told his preschool teachers that they were ignorant because they didn’t listen to him. He can read almost everything that’s put in front of him, (provided it’s of interest to him). However J is incredibly literal, he doesn’t understand sarcasm, metaphors or at times even the words that are said to him and interprets them in his own way. This is the same with the written word, the school rules are a good example of this. One of the school rules that are written down and displayed throughout the school states once you are outside you must stay outside. So the majority of children would tell someone if they need to go in to go to the toilet or to get a tissue for example or they would just go in and then return to the playground but not J. If he needs the toilet and is already outside he won’t go back inside, instead he’ll hold it in and wait until he comes home or until the next playtime (if he remembers before he goes outside), because the rules say once outside, stay outside! When people say things to him or make suggestions to him he takes them as instructions, things he has to do. For example if a teacher suggests he try eating his apple peel rather than throwing it away, his understanding of that was I can’t eat apple at school anymore because I have to eat the peel and I don’t like it, so I simply can’t eat it anymore! He’s extremely fearful of getting into trouble at school and getting “told off” by his teachers and so he struggles to tell them if he doesn’t like something or if he can’t do something etc and due to this fear and lack of trust in his teachers, he releases those fears when he gets home. He tells us that he had to do something (handwriting is a biggy!) even though it hurt his hands or he didn’t know what he was supposed to do and when we ask him if he told his teacher this, he responds with “I couldn’t, I just had to do it or I’ll get in trouble!”

J also has difficulty at times processing what has been said to him. Often if something isn’t said directly to him, he doesn’t understand that he is being spoken to and may need instructions etc repeated. Often if there is alot of other things going on around him he struggles to focus on what is being said to him because unlike you or I, he can’t automatically block everything else out and focus on just that one person speaking.

I could go on and on. The point I’m trying to make is yes, Asperger’s Syndrome is a hidden disability but invisible? I don’t think it’s an invisible disability, some of his difficulties are hard to spot, hidden even but alot of his difficulties and how he displays them are so visible it shocks me that people (and I’m directing this at schools, you know those people who are supposed to educate our children!) can be so blind to them. So I’m left asking is it really an invisible disability or are Aspie needs just ignored and misunderstood?

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I took this picture because the colours symbolise how we’re feeling about J’s school at the moment.

On one side we have green for go – the ECDP (EI) unit at the school is fab. J loves it there and we have noticed some big changes in some of J’s behaviours as a result of attending there. He also has a wonderful teacher who understands the kids and who listens to us as parents and to our kids but more than that she makes an effort to help and support.

On the other side meanwhile we have red for stop – symbolising the school itself! J is now only attending mainstream Prep 2 days a week and Wednesdays he is staying home with me. I have had comments made to me in an attempt to make me feel bad for taking my son out of school one day a week, (it didn’t work, we had a great day yesterday until bedtime when J started with his usual “I don’t want to go to bed because then I have to go school in the morning” behaviour). J makes a fuss every morning before school and on Prep mornings I have to literally drag him into school but I’m told “it’s all for your benefit, he’s fine when he’s here”……………… No he’s trying to tell everyone that he doesn’t want to be there, he’s not like it on a Monday and Tuesday (we only had 1 morning at ECDP like that) so obviously there’s something about Prep that is bothering him. And I got informed today that his class are going on a small excursion in a couple of weeks and here’s another quote “it’s only an hour on the bus, the kids always love the journey”…….. mmmmmm wonder if his teacher has ever been on any journey lasting more than 30 minutes with a child like J! We mentioned it to him on the way home and he already started to freak out about being on a bus for so long!  We also received a letter from the school today, dated 14th Feb telling us that he was to be assessed by an OT at school and we could meet with the OT to discuss what the assessment was all about but we had to meet with her this afternoon and we didn’t receive the letter until after school…….. seriously what’s the point?

With so many negatives at the school right now, we’re considering our options for next year. J will finish at the ECDP at some point later this year and I just don’t feel that the school will consider, let alone meet J’s needs so whatever happens I don’t think he’ll be continuing his education there. The sad thing is we’re not alone, I know of 4 other parents of special needs children at the same school who feel exactly the same way. *sigh*

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J was very ill in the car this morning on the way to school………… obviously we never made it to school! I’m unsure as to whether he’s actually ill, (he says his belly hurts and actually took some medicine!!!) or if he made himself ill, he has been very anxious about going to school. Either way I kept him home today and have decided to keep him home tomorrow too. He’s been very quiet for most of the day………….. very unlike him and he’s just started asking if he has to go to school tomorrow……………… so again unsure if really ill or overly worried/anxious.

Anyhow this little guy hopped over to our front porch to say hello and even managed to brighten J’s mood………… even if it was just for a few minutes :)

Thankyou Mr Toad

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It’s raining again today but it pretty much sums up how we’re all feeling at the moment.

This morning, as usual on his Prep days, J started the day with “I don’t want to go school!”  However what was different about today was, once I’d finally got him strapped in the car………… for the second time, (escaped the first time!), he started crying………………..real tears. J often has tears when he’s having a meltdown or a moment but they’re usually tears of anger and just pure uncontrollable emotion but he rarely has “real sadness tears”. Today they were very much real tears. It broke my heart to leave him at school this morning knowing how upset he had been in the car. When I left him, he begged me to first take him home and then to stay with him. Today I very nearly did bring him home………………………

He told me whilst crying and begging that school is too hard. I asked him what was hard and he replied “Miss C said we have to be good and it’s too hard, I can’t be good all day and I have to ‘cus I’ll get told off otherwise”. I told him that he should tell his teacher this and that if he really couldn’t “be good” (whatever their idea of good is!) then he could have a silly and that everyone has a silly at some point and that it was ok. I told him it wasn’t naughty, unless he hurt someone because that wasn’t very nice and that it was just what he had to do sometimes but maybe we could try to think of some other things he could do if he thought he was going to have a silly. And I told him I thought he’d done a fantastic job at “being good” at school so far and promised him he could have a day off soon ……………. What else could I say? Bless him this is obviously something that has been eating him up inside and possibly the cause of some of his anxieties.

To be honest we prefer to use the words nice and silly or not nice rather than good or bad …………… everyone’s idea of a well-behaved child is different but for us if J has tried his best at everything, then what else can you ask for. There really isn’t any point in putting unreasonable demands on a child when it’s simply going to cause more stress than necessary.

Anyhow I hope a big cuddle from Mummy tonight helps him and reminds him of what a “good boy” and what a special boy he is to Mummy and Daddy.

I’m really not looking forward to tomorrow……………………….

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Today just like every other school day so far I dragged carried J into school because again he didn’t want to go. Then tonight at therapy he was quite disruptive, throwing toys, escaping from the room…………..oh and he drew on the wall!

On the brighter side…………..J had a wee at school today!!!!  YAY!!!!   and (with the help of a smartie cookie), got into the car after school without too much of an argument………………………….Let’s see how bedtime goes! :)

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Ahhh there it is!

Needing my quiet place again this week…….. and it’s only Tuesday!!!

Over the weekend J’s anxiety driven behaviour has gotten worse and Sunday night he declared “I’m quitting school because I HATE IT!”  Yesterday morning he refused to get dressed and finally put his clothes on just before leaving. He absolutely did not want to go to school despite being aware the he would be with Miss S at the ECDP (EI). I had to put his special doggy, (cuddly toy) into the car and threatened to let all the other boys and girls play with it if he didn’t get in the car! I know I’m an awful mother and it probably didn’t help his feelings towards school but I didn’t know what else to do. Then once in the car he lost it and started trying to get out of his seat so (please don’t judge me badly) I threatened to throw special doggy out the car if he took his seatbelt off. Abit extreme I know but he has taken it off twice before on the highway, I didn’t want to make it 3 times and it’s the only threat that works! Once at the school we had to park just about as far away from the school as possible and he REFUSED to go into school! This was all new for me because J usually loves going to the ECDP, it’s just Prep he had a problem with but it would seem it’s now just school in general. So I scooped him up and carried him all the way into school, once through the school gate at the ECDP I put him down, he can’t reach the gate to open it so I knew he couldn’t escape :)  When I said goodbye to him he tried to grab my face and got told off by his teacher………..whilst at school he was really well-behaved and coped well again, although he wouldn’t go to the toilet at school so was bursting once we got home.

Last night we had one of the worst battles ever at bedtime, he refused to go to bed, he refused to go to the toilet, he tried to bite his Dad, (but Dad just caught his head before the teeth sunk in!), he needed to do this, he needed to do that, he needed a certain story but then needed a different one, it just went on and on, (much like Sunday night) and ofcourse we had tears and screaming.

This morning was almost the same as yesterday but this morning I had to throw his socks and shoes in the car and carried him out to the car because he refused to put them on…………… can’t go to school if he doesn’t have them on……. sorry sunshine but yes you can! This morning he actually walked, (kinda), into school once we’d got to the gate.  Whilst at school he informed Miss S that he hated school and he hated Miss C and school was too hard and he was there for a really long time and he gets tired. She told me they had a chat today and that she was going to make some visuals for him to help with his transition to Prep, the hope is that by term 4 he will be in full-time Prep and won’t need to attend the ECDP any longer. She also promised to look through the fence and give him a wave tomorrow when he is with Miss C in Prep, which I thought was a really nice thing for her to say, (I hope she remembers!).

As for tonight, he went for a play with some friends but when we left we had fireworks in the car. He didn’t want to go home and made sure I knew that…… all the way home! When we got home he refused to eat anything, after about an hour of “negotiating” I convinced him to eat a squeezy yoghurt and a small chocolate cake. Not great but at least he had something in his tum when he went to bed. *sigh*

Speaking of bed………. bedtime went a little easier tonight, it only took 35 minutes to get him into bed and so far I’ve only been into him 4 times.

I wonder how many times I’ll be called into his room during the night *bigger sigh*

I wonder how long he’ll be able to hold it together at school when he’s getting little sleep, due to waking up during the night, and having so much anxiety build up about attending school. *even bigger sigh*  He was spotted by Miss S today, building up a “moment”. She said he started to get “the look” but because she recognised it and knew what to do, the situation was resolved very quickly and very easily………… I wonder if Miss C would have reacted the same way…….. time will tell I guess.

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I really need this place right now!

It’s been a tough couple of weeks but this last week has been especially tough!  I’ve reached the top and had to stop before I’ve blown a fuse!

Firstly my husband has been off work all week after hurting his back at work and is off for at least another 2 weeks. Let me just explain something, my husband is someone who HATES relaxing and doing nothing so to be off work, stuck at home and unable to do anything is driving him crazy and that is driving me crazy! Doing nothing is also making him really grouchy! Ok I know he’s hurt his back and he’s in a fair bit of pain but seriously I can’t wait for him to get back to work for all our sakes!

Secondly it’s been really hot here this week, my car doesn’t have aircon and I’ve had lots of meetings this last week which have meant spending lots of time in the car!  I really need a new car before next summer……..one with aircon!

And finally there’s J and Prep! He’s been coping really well whilst at school but as soon as he’s out of those school gates all hell breaks loose! This week has been worse than last week and it’s just been constant, one meltdown after another :( On Wednesday it took me almost 20 minutes to get him into the car when we left school! It was too hot, the seat didn’t look right, he couldn’t get in with his shoes on, once he was in the seat didn’t feel right and it was hot so he got back out again………. it just went on and on. Then he started on the way home because the wind blew into the car and touched him! It’s been like that all week, he’s been way more meltdowny and grumpy than usual. J doesn’t understand his emotions or how to control them so we only ever get extremes……….. extreme happiness, extreme excitement, extreme sadness and of course extreme anger. He has been shouting and screaming just about everything to us, he’s been extremely      unco-operative, every tiny little bump has meant that the world is going to end, (and there’s been a few, his clumsiness has skyrocketed too), he’s had a problem with just about everything, he’s been quite aggressive towards us, (pushing, hitting, kicking, pinching and biting), he’s started biting himself and sucking his arms, legs, fingers etc,he’s barely eaten at home and some of the bedtime battles have been quite spectacular!  Meanwhile at school he’s been a different child.

We have had a couple of issues at school. The first day at the ECDP (Early Intervention) he was due to be in another classroom with a new teacher so that caused a mini meltdown, (but in a way it was nice for them to see that), once Miss C had told him that there was some mix up with numbers and he and some of his other former classmates from last term would in fact be back in their old classroom with their teacher from last term, Miss S, he was ok and happily went into his classroom.  My issue with this is, we have been told that he will be going into the other classroom with the new teacher, they just don’t know when that will be. They have introduced him to the new teacher and even to the new classroom but each time Miss S, (who he feels very secure with) has been with him, when he moves she won’t be there. So we’re going to still have all the issues we had on his first morning. *sigh*

He went into school ok each morning until Thursday this week, (once we’d actually got to school). I took him to school on Wednesday morning, (mainstream Prep), and we had the usual fun and games trying to get ready for school, leaving and then during the car journey but once at school he went in ok, not happy but ok. He went straight to the table with the clean chair and the pink playdough………….only thing was the classroom had been moved around and the playdough  table wasn’t where it was supposed to be!  It really knocked him for six and he refused to go to the playdough table. Whilst we had a few grumbles I left him creating something with a peg board. Thursday morning he just point blank refused to go into school and I had to drag carry him in and then catch him twice as he managed to escape the classroom, he didn’t get very far, I was ready for anything. He didn’t look too impressed when I left him that morning and he certainly made me suffer when I collected him Thursday afternoon. Yesterday was pretty much the same as Thursday, but he also banged his head (purposely!)  on the wooden railing at school and informed me, whilst crying, that he couldn’t go to school because he had hurt his head and I’m sure it’s all linked to the classroom furniture being moved around. I have spoken with the teacher and I’m hoping if they decide to move things around again they will give him some sort of warning because he can’t cope with change.

He made a good start with food during his first week of school, eating pretty much everything I put into his lunchbag, (much to my amazement!) but over the later part of this week he has come home with at least half of his packed lunch. Again I think it could be related to the change around of the classroom but maybe it’s also getting to the “ok I’ve been a school a couple of weeks and I still don’t want to be here” stage.

The other issue we’ve been having whilst he’s been at mainstream Prep is toileting……….. he just hasn’t been going at all! He often waits until he’s desperate for a wee before he’ll go so we prompt him every so often to go, try for a wee and his ECDP teachers also remind him so no problems on a Monday or Tuesday. I spoke with his Prep teacher about it and she told me that she has been reminding him every lunchtime to “go to the toilet, wash your hands and get your lunchbag”……….(take note of her words)  Far too many instructions all in one go for J bless him. When I asked him why he hadn’t been for a wee he replied, (Miss C never told me to, she said I had to wash my hands!”. *sigh*  So had another conversation with her Friday morning about how it would be better if she gave one instruction at a time and made it clear that he had to go to the toilet, (for a wee) and then remind him to wash his hands afterwards. Finally yesterday he actually had a wee at school so he didn’t have belly ache and he wasn’t bursting to go when we got home.  I’m hoping this continues, once he’s been doing it for a couple of weeks he’ll get used to the routine and will (hopefully) just do it automatically…………..only time will tell.

Overall he’s coping so incredibly well whilst at school but out of school is such a different story. I wonder will it always be like this?  Will it pass once he finally gets settled and then start again next year?

I get why his behaviour is the way it is, I really do……. I get that he trying so hard to be “good” in school and to be like all the other kids and I understand that once he leaves school he’s with Mum (and Dad) again so he feels he can just release everything he’s been trying to control all day because he knows we love him unconditionally and it doesn’t matter what he throws at us (literally, it was the office chair this morning!), we’ll always be there. You see I do, I really do get it but that doesn’t mean I don’t wish it was a little easier. I love him and even with the constant meltdowns I love every minute that I spend with him but over the past 2 weeks I’ve started missing some of the fun we had together before school began.

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Silent Sunday

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This is how I left my little man this morning, happy(ish) with some pink playdough.

(taken with phone whilst escaping, picture quality not great, sorry) :)

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J had his 1st day at Prep yesterday. He started school full-time on Monday but he goes to the ECDP (Early Intervention Centre) at the school on a Monday and Tuesday.  Yesterday Morning J woke up telling me that he didn’t want to go to Prep……. at 5.50am!  Anyhow he waved Daddy off to work and then I asked him what he would like for breakfast.

“Do I have to go Prep if I have breakfast?” was the reply I got. *sigh* not going well.   I explained to him that he would still have to go to Prep and it didn’t matter whether he had breakfast or not, but if he didn’t he might get really hungry whilst he was at school.  He gave in and ate a cereal bar, after which he began whining again. I simply plodded on, brushing his teeth and getting his uniform out for him to put on……… cue meltdown!

I had planned on leaving the house by around 8am so that we could park at the school, that way if the worst happened I wouldn’t have too far to carry him.  I finally got his clothes on him by 8:05 then we had socks and shoes to deal with!

Anyway once he was all dressed with his bag on his back, (Mario bag ofcourse), something inside of him seemed to click, it was like his head had told him “look you’re going to have to go anyway so you might as well just give in, smile and try to have fun”.  He stood at the door posing for photographs, (to show Dad later) and then calmly climbed in the car!

When we arrived at the school we walked around to his classroom, he was quite cautious at first. We put his bag and his lunch away and then he spotted the pink playdough :)  J’s favourite colour is pink and he is a fan of playdough, as I looked at him I saw a smile appear on his face. After sitting with him for about 5 minutes or so I decided that maybe I should go while he was happy so we had a kiss and a big cuddle, I assured him that I would pick him up later, after lunch and I left.

6 hrs later I returned to pick him up from school and I simply couldn’t believe how good  a day he’d had!  On the way home he had a “moment” in the car because I went around a roundabout! and then another for something else when we got home. He stripped off once again as soon as he got inside the house, (really doesn’t like his uniform) and then spent the entire evening playing on his DS, yelling at me, calling me names like “pooey!” LOL  But for once I didn’t care because he’d had a good day at Prep and I was prepared for whatever he might throw at me. It must be very hard for him to be “well-behaved” and controlled whilst he’s at school, but he did it and so I knew he’d have to release when he’d got home so I was ready.

I’m so grateful that he has the teacher that he has because so far she seems to be very open with her thinking and very understanding and helpful. Here’s a couple of quotes from J, re his 1st day -

“We played outside and I even went down the slide, it was dirty but Miss C showed me that the dirt was stuck on so it wouldn’t come off!” :)

” We had to sit on the floor outside but there was a clean bit for me to sit on” :)

I know it’s only little things but being messy/dirty is one of J’s big things so for his teacher to be making an effort to find solutions, however small they seem is a huge thumbs up from us.  I also discovered that whilst J was at the ECDP, (which is right next door to Prep) Miss C had waved to him and said hello to him whilst both groups where out playing.  Little gestures like this also big thumbs up!

As for this morning, once again he didn’t want to go but once at school he was fine, I left him once again with the pink playdough, (sitting in the same chair as yesterday) ;)  so I’m hoping he’s had another good day and I know there WILL be bad days but for now so far so good.  I’m so incredibly proud of him, he’s done so well, so much better than everyone, (including me and his Dad), thought he’d do, here’s hoping it lasts. :)

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