The First Week

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Little man has done his first week at school.

So how did it go?

Well…

Up until today, S was eager to go to school. He was tired when I picked him up but that’s to be expected of most children regardless of sensory issues.

Mrs C is keeping a record of what he does at school so that we can see how he is progressing on a daily basis. She knows he likes Fireman Sam so she is using stickers to highlight when S meets his little goals such as sharing with another child or sitting for a story etc. It’s a positive book and it gives us a good idea of what he’s been doing in the morning because I can’t get anything out of S when I pick him up aside “UH” and “I DON’T WANT TO TALK TO YOU!”.

So far so good.

I knew today was going to be ‘one of those days’ from the onset as little man was exceedingly grumpy and for the first time this week he said “DON’T WANT to go to school!” We had a difficult morning with him but we managed to get him to school on time. When Mrs C greeted us at the door I warned her that he wasn’t in a particularly receptive mood. However, she said that she was going to take him into the hall for a few minutes at dinnertime so that it wasn’t a total surprise to him on Monday when he will have to go in with the others to eat his packed lunch.

I’d only been home about 20 minutes when Mrs C phoned. I nearly choked on my decaf when I saw the schools number on my phone. I answered with trepidation but she just said,

“Nothing to worry about.. just taking on board what you said about S having a bad morning so I think it’s best if we give the hall a miss if you’re in agreement?”

Reading between the lines I gathered that little man’s difficult behaviour was continuing in school..

I picked him up at the usual time and sat in the small foyer with the other mothers. This  wasn’t an easy task for me. I don’t cope well in small crowded spaces but his needs come before my discomfort. Mrs C brought him to the door and one look at his face told me that I was in for it. I jumped up and held my arms out (as always). Little man backed away from me and in front of all the mothers shouted “I DON’T LOVE YOU MUMMY!”

WHOA!!

I’ve had the “I DON’T LIKE YOU MUMMY!” a few times but never this.

With a massive lump in my throat, and tears threatening to spill, I tried again and got told the same but with an added “GO AWAY!” for good measure. Each attempt to do his coat up failed miserably and at one point he swung his bag at me. At this point I pretty much wanted the ground to open up and swallow me. For this to happen was bad enough. For this to happen in front of an audience, (most of which do not know that S is being assessed for autism), was humiliating. Mrs C was trying to calm him down but he wasn’t listening. I asked how he’d been, (though I had a damn good idea), and she said he’s struggled a bit and was tired but she told me not to worry.

I basically had to manhandle him out of the door where he continued to fight me while I did up his coat as it was teeming with rain. This continued until I said the magic word ‘Numberjacks’ – then he shut up.

We got back home and I gave him his jam sandwiches and read the book. The words ‘struggled’ and ‘was tricky’ and ‘tired’ stood out but not unsurprisingly so. On the positive side, despite the struggle, he was still able to tolerate tasks which is great.

I waited until Mick Flick came in and then I did what I always do when it gets too much…I went to sleep.

Next week will be even more of a challenge for my little boy, (and me), because he has to stay for his dinner. More stimuli for him to deal with. I expect that next week will see more of today’s behaviour but there is a meeting for parents on Thursday so maybe we can assess things then to see if we are doing what is right for his needs. He’s taking a packed lunch because there is no way that he would cope with school dinners. He is so limited in what he will eat, he would have a full meltdown at the sight of a pea, potentially trashing the gaff.

The positive to all this is that it’s all being recorded for the assessment.

So that’s it. That has been the first week. Some highs and some lows. Today was a low for me. It takes a lot of mental energy to cope with S and his issues, aside with coping with my own. I simply ran out of energy today on the one day that I really needed it. I know S didn’t mean what he actually said. He doesn’t know what love means. They are just words to him and he doesn’t know how much they hurt me to hear them. But I’m more emotional than I am rational and even though I know it means nothing…it still cuts deep.

Today I felt alone and I cried to a mother who is no longer here. I know that I need to find a group of mothers who understand. I need to be able to get all this stuff out even if it’s once a month. I like to deal with life’s challenges by using humour but today the laughs just wouldn’t come.

“Imagine smiling after a slap in the face. Then think of doing it twenty-four hours a day.” Markus Zusak ~ The Book Thief

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18 thoughts on “The First Week

  1. Oh dear, that must have been so upsetting for you, especially after the strong start earlier in the week. I guess that’s the way it goes with ups and downs but it can’t make it any easier for you dealing with those kinds of challenges knowing that. Maybe it was the accumulation of a whole week of something new along with some tiredness that culminated today…. Sending you a big hug and much strength. xx

  2. Love you Sis and hoping next week goes better for you and my little buddy. Big hugs, lots of tissues and my shoulder is all I can offer really as I can’t being to imagine what it is like for you and S but I am trying. I’m glad Mrs C is there to help him during the day as she sounds lovely and clued up. Its also good to hear that he managed to do the tasks set for him, which must be hard for him when he feels like he did today.
    Is there a support group in your area for parents with kids with autism? I think its definitely worth looking into!!
    I love you lots and lots. Tweet or email (if 140 characters aren’t enough) whenever you need a chat or a rant or an ‘I’m here and I love you’ from me xxxxxxx

    • Thanks Sis x
      I’m going to look into support groups. I was going to wait to see if S got a diagnosis but regardless of whether he gets it at this stage…he can be challenging and I think that I would benefit from spending a few hours with mums who won’t judge me as an incompetent parent who can’t control her child.
      Love you too xXx

      • I would hope that all the parents at the support group would remember what it was like waiting for a diagnosis and welcome you anyway. I would never judge you like that but I know what you mean lovely. They KNOW what it’s like. Always here for you whenever you need me.

        Love you more xxx

  3. Hi honey, not much I can……words are easy out of my mouth but you stand there in front of everybody not knowing what is going to come out at you next. It would be easy to say don’t worry about what other parents say cause that’s stupid…I would.
    I could tell you were desperate this morning and all I could do was send my love and apart from that I was rather useless.
    Do you think it will be better if S gets actually diagnosed and word gets to the other parents about him. Maybe someone will put the head up there and do the nicest thing possible, even just to ask if there is anything they can do to help you, or ask you back for a drink. Even if you don’t want to go and make an excuse, it would show that they support you….not too much to ask.
    S is not naughty, he doesn’t understand his actions or his words. I sure when they were younger, one of mine, yes it was Laura, said “I don’t love you & I mean it”……I’m not sure how I felt about her at the time, what a bad mum dies that make me???
    I can understand your tiredness & tears……just remember you are so loved about the people who care for you and these people really matter.
    Love you darling xxxxxx

    • Aww Thank you Ma x
      You weren’t useless!! It helped a lot.
      Diagnosis might not change some people’s opinion that autism is just an excuse. There is a lot of ignorance about and people seem to be more sympathetic to disabilities that they can see. With sensory issues…you only see the effects because the problem is on the inside. These ‘effects’ are often mistaken for naughtiness.
      Yesterday was the end of what felt like a long week and it got too much for both of us.
      I’m dreading Monday…
      Love you xXx

  4. I’m thinking it might be of great help to you and S to talk with some other parents and carers of children with autism/aspergers, because they can understand and sympathise with the special hurdles that you come across.

    Here are some addresses. It might be worth your while to check them out and hopefully make things a little easier, as they might be able to share some practical ideas and offer emotional support.

    http://asgma.org.uk/node/44

    [url=http://www.autism.org.uk/our-services/residential-community-and-social-support/parent-and-family-training-and-support/family-support/teenage-life/support-and-services-for-parents.aspx]The National Autistic Society[/url]

    http://www.nhs.uk/Livewell/Autism/Pages/Helpparentscarers.aspx

    Lotsaluv, as always

    Skattykat xxxxxxxxxxxxxxxxxxx

  5. What.a day.for.you.both.:( Have school thought about finding S a quiet spot in the lunch hall or at least making sure he has the same seat (preferably at an end) every day? How is he with noise? M can’t cope with the canteen at all and there are only 30 children in the school. She eats in the classroom with a TA and one friend at a time.
    Hope you can all relax this weekend xx

    • S doesn’t cope well with noise but I think they are going to try him on Monday to see how he copes and make adjustments (if needs be) from there. I’ve got his Lunch bag out for him to see and I’ll keep reminding him that he will be having his dinner at school. I wish I’d have been able to eat elsewhere when I was at school..as it was…I struggled and still can’t eat in crowded places.
      I really have no idea what will happen on Monday. He could have a meltdown there and then or cope initially and have the meltdown later…or he might just cope full stop. He was used to having dinner with his friends at nursery but there were only about 10 children. This will be a huge change..
      Thanks for your comment, lovely xXx

  6. Oh honey what a rollercoaster for you. On the plus side it sounds as though there were thing that he coped with really really well. But I can only imagine how upsetting collecting yesterday must have been for you. Despite the fact your rational mind knows that he doesn’t know the meaning behind the words he used, as a mummy I can well see how hurtful it was. Bless him, there’s so much to try to absorb in such a busy vibrant new setting. You take good care of yourself and remember to look after you too. And also remember there is a huge support network here and we all send our love and strength to you xx

  7. My bag of trouble often tells me he doesn’t love me and for I while I started to believe it could be true.
    But I do get droplets of love now and again. It’ll never be enough but I do know he loves me. It’s not easy T, but keep picking yourself up after the upsets. I know all about tiredness and tears…I’ve known little else constantly for over six months now and you’ve been so kind and reassuring to me and I thank you so much. You must give yourself more treats too…more relaxation.
    Think about massage and exercise too …I’m not calling you a fat arse!!!!! Anything to help unwind. That’s what I’m looking at now.

    Being SELF-ish MUST be a priority too, you know!

    • I know you’re right and I know that you understand what I’m going through…I’m grateful for your support. It’s much worse for you but you still find time to support me, you’re a good friend. x
      I do need to have something for myself. I was going to do a creative writing course until I realised that it clashed with picking little man up. I’ll find something..
      And you know damn well my arse has it’s own postcode! 🙂
      Thank you dearest L xXx

      • Keep looking at the creative writing course, perhaps there are other times to suit? I think there are online courses too but you should try for classes you need to attend as it’s an opportunity to meet people.

        I’m ok right now xx One day at a time ah. xx

        Thanks for the kind words.

        And my ass isn’t big ner ner ;O

  8. ps..forget the postcode…maybe it needs its own town?

    ………………………………. run run run ……………………………………………………..

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