An emotional rollercoaster

19 Sep

I don’t even know how to begin this blog! There is so much in my head right now, I’m finding it hard to put into words. My emotions are so muddled, I honestly have no idea what lies ahead. I feel I’m on a rollercoaster that I can’t get off. Will it ever stop?

I look at Little man and for a minute I catch him smiling. His looking through the Argos catalogue as it’s almost his birthday. He never asks for things that most children ask for.. We have had a list consisting of batteries, padlocks and electric fly lights in the past. (Fly lights are the things you hang in restaurants. The fly is attracted to the light and ends up pretty much fried on his quest to have a closer look) This year he has his heart set on a trailer that connects to his bike. His plan is to load his sister or baby brother in the back, and then take them for a ride… Sounds sweets I agree, but there is more to it! Of course this trailer will become a bus. He said it will make a perfect bus. “I love it mum look” Yes.. its fair to say I’ve heard this throughout the day. His excited I’ll give him that. Still Its pretty nice to she him this way as these past few days have been challenging. I’m not saying his overly challenging behavioural wise! His been more emotional than anything.

Work we were given for him to do a home (His on another two-day exclusion from school) had him in tears. Maths work was fine but when it came to writing the definition of words that he would need to search for in the dictionary, he was in tears. It seems that dictation is something he really struggles with! After a few minutes I decided this wasn’t going to happen. Why press him on something that was clearly too much for him! I’ve decided to try to solve the problem by creating the same work on a word document so he can do it on the computer. He seemed keen for me to give it a try when suggested.

Late yesterday evening Little man wondered downstairs again in tears! When I asked what was the matter he tells me his head hurts. As is sister has been feeling ill recently, we were out of medicine. Lucky his father was round as he went of to the local supermarket that thankfully closes at midnight. Little man was in a ball on the sofa saying “Please god, please god make it go away” I really do think the last few days must be grating on him, that or his gave himself a headache with all his shouting🙂 I hate to see any of the children unwell or in pain, its horrible feeling so helpless. Thanks to dad Little man had some medicine and though it didn’t go completely, it took the edge off. We headed off to bed and little man jumped in beside me. We had to make sure the room was in complete darkness (He loves sleeping in complete darkness, but he said this will also help with his head) He must have been so worn out as within a few minutes he was out for the count. Surprised! Very much so! Little man very rarely drops off without running through a few bus routes (Writing this I can hear the faint sound of beeping and the words Elephant & castle station) I couldn’t be his teacher along side all them other children. Hats of to the classroom teacher. Maybe playing teacher was my reason for sleeping so well🙂

So…. Tuesday Little man will return to school! A reintegration meeting will be held on that morning before he heads back off to class. It’s always difficult for little man to reintegrate back into school, and I have everything crossed it’s better than other times in the past. After the meeting I will then be heading of to the library to hopefully complete my NAS training modules by the given deadline. It seems that lately time isn’t on my side, everything typically happens at once and it just never seems to stop.

As I mention briefly in my last post, the LEA’s Sen panel has informed me the request for the statutory assessment won’t be heard by the panel till the 30th of this month. It just angers me that it’s been delayed! I really can’t see why it wasn’t put in on time for the panel meeting that took place on the 16th (Or there about that date) It’s seems all the reports were sent to the LEA, all but the assess one from the school. I’m puzzled as it was decided the school would submit the assess one back on the 5th of July. This was at least three weeks before the summer holidays.

Mediation date has still not been agreed on by the LEA. I guess they are waiting to see if the Sen panel now decides to go ahead and make a statutory assessment. If this is the case, they do assess, then mediation wont actually be needed. The Sen process is a long slow one, getting any LEA to take notice of your child has to be one of the hardest things I’ve ever had to do. (That and giving birth, though giving birth is a hell of a lot quicker) You hear other parents saying how it isn’t easy and how you should be prepared for one very long process. “YER RIGHT, HOW HARD CAN IT BE?? AFTER ALL MY CHILD IS MAKING ZERO PROGRESS IN HIS CURRENT PLACEMENT. THESE PEOPLE ARE OBLIGATED TO SEE THAT HIS NEEDS ARE MET, RIGHT?” I am now one of them parents who knows that this s**t isn’t easy. So what do we do to get these so-called professionals to listen? Dont look at me for answers, I’m all out!

Well…. Someone did give me an idea! It’s not the first time I’ve heard it or even considered it myself , it’s just an idea I consider to be a tad tricky… Video recording! For us it’s not as easy as one would think. This idea scares the hell out of me. Now with Little mans agreement it’s Ok…But of course a child can act somewhat different in front of a camera they know is there. (He don’t really like being filmed unless it’s him doing the filming, Yes he often wonders of with your iPhone, then holds the phone in front of his face as he tries to rap about buses) Ok so I should hide the camera and somehow hope he doesn’t find it. It would provide some pretty spectacular footage of our wonderful morning routine. Even better how about our early evenings, If his not with his friend his laid out on the stairs screaming abuse at me :(  Thankfully this don’t always last the night. Oh yes he sometimes settles till bedtime when he then converts into this double-decker bus (194 and 53 at present) So whats my issue? Why don’t I fancy this as a good idea? Well.. Two reasons! Reason one… What mother enjoys spying on her own child? What mother wants to break their childs trust and privacy? (That was one answer not two :)) Second…. Would you wanna be in my shoes when (and I mean when) he finds out? My son hates being watched, unless his acting the clown or doing something he want’s attention for. I only recently discovered that for some children on the spectrum, looking at them can almost seem like you’re trying to look inside them. Little man often complains about his sister looking at him (It don’t help when he see her as his enemy) I can just picture the scene if he was to catch me in the act. He can often go on for hours about something and this would be no exception.

I just feel unless your child, family and mental health have been hung out to dry, you just don’t get anywhere. What do they want, need to see before doing the right thing? They say that the most important thing for any child is a good start in education. Do they only mean this if you’re stopping your child from attending school? Little man isn’t the only one! Millions of children face this battle. Some will come through it Ok, having managed to get some sort of education, others become damaged with rock bottom Low self-esteem with no prospects…



4 Responses to “An emotional rollercoaster”

  1. free movie streaming October 5, 2010 at 10:00 am #

    Fantastic website, I had not come across previously during my searches!
    Keep up the excellent work!

  2. Tilly September 22, 2010 at 9:53 pm #

    Well, I don’t have anything helpful to add but I just wanted to say that I really appreciate your blog and the information that you provide is really helpful to me. We’re right at the beginning of our Asberger’s ‘journey’ and so far we’re getting not very far and not very fast. I’m sorry that’s it’s all so ridiculous and stressful and frustrating for you and your family.

  3. Lindsey September 20, 2010 at 3:35 pm #

    Hello Claire,
    I think both you and G deserve so much better, all this tension is bad for both of you and your mental well being. Schools should be there to facilitate, I have never met you but having read your posts and blogs for some time know that you are an attentive and loving parent. G is obviously a bright child with inspired ideas, it is SUCH a shame that the school don’t recognise or celebrate this and support you both in helping G learn in an environment conducive to learning and exploration. Shame on them.
    I do love reading what you have to say about G and his wanting a trailer for his bike so that it can be a bus, and the Elephant and Castle; so much like Jo! (“155 to, Elephant and Castle, beep, beep, beep, beep”) Puts a great big smile on my face :o)
    You and G have done nothing wrong, you are good people who deserve a bit more understanding and respect, you are the professional when it comes to your child and they should be willing to listen and learn from you. Their failure to do so is perhaps what’s causing so much division and hardship. The ignorance they deal out to you is insulting to every person touched by ASD and to every school, charity and educational authority trying to raise awareness and make a positive difference. Am sure things will soon be better for you, I hope the stress subsides. You have our full support! X

  4. mumtoj September 19, 2010 at 9:56 pm #

    I’m sorry but I have no wise words for you or advice to give but I can somewhat relate to what you are saying and feeling. We went through a similar thing just getting our diagnosis. In the UK we were 1st told we were the wrong side of the county border the the “specialist” on the right side of the border assessed J, (whose 4), and informed us he was a perfectly normal child and we were only concerned about his behaviour because I was depressed because it was Christmas! When we moved to Australia earlier this year we paid to see someone privately, expensive but worth it, and thankfully J was having one of those days, (you know what I mean), the Paediatrician took all of 10 minutes to diagnose High Functioning Autism/Aspergers. In fact J was so bad that day that my husband had to remove him from the room because he was being so disruptive! Now that we have a diagnosis things are moving quite quickly for us, J is now able to access therapy and is due to start at special program at what will hopefully be the school he will be attending as from January. He will be assessed whilst he is at the program so that they can decide what help he will need when he is in mainsteam school. However the 1st school we approached told us that whilst J was there he would receive very little, (if any), help and would cope. I know you understand that this was just not going to happen! So I can understand how you’re feeling, I’m just hoping that the school does what it says it will do.
    Oh and I completely understand the “looking at me” thing, J also hates people looking at him, it’s so much fun when he has a meltdown when we’re out somewhere and then people look at him, (usually as a child who is being naughty!), well that just makes things a whole lot worse because then he’ll start erupting because people are looking at him, and yep he too can go on for hours and hours…………… 😦
    I hope things work out for you and your little boy.
    In the meantime I’m sending you hugs ((x))

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