Just Zoë, Just Life

Category Archives: Special Needs, Special People

http://www.xtranormal.com/watch/13849323/superheroes-are-made-of-sterner-stuff

Advertisements

The boy has been off school for nearly a month. I have been fobbed off again and again by the LA regarding any alternative provision, or any respite. Meanwhile, the Royal ‘Panel’ sit in their magnificent castle, away from the likes of us mere peasants, and occasionally have ‘meetings’ where they get to feel magnanimous as they discuss the fate of Special Needs children. The Royal Panel meet again on Friday when, with enormous largesse,  they may deign to grant my dear boy a place at the local special school. Or they may instruct their handmaid – the caseworker – to fob me off yet again, telling me they have to have another ‘meeting’ to decide to send him somewhere else.

That’s if we last that long. 

It is doing HRH no good to be stuck at home all the time, and it is doing me no good either. I have been valiantly trying to help him learn, while also trying to sort boxes, make the endless moving-house phonecalls, and keep up with the daily treadmill of housework (I hate housework with a passion) but, dear God, the last conversation about carbon monoxide made me almost wish for a faulty boiler.

I lost my temper, though I did not shout. I just said, through slightly gritted teeth, “Ok! Ok! Enough! No more questions about carbon monoxide, or carbon dioxide, or whether it’s going to kill anyone, or whether or not grown-ups are going to talk about you when you’re not in the room. I will talk about you sometimes. I’m your mother. Get used to it. No, I am not going to tell you each and every time I do. The boiler has been checked. We will get a carbon monoxide alarm, but WE ARE NOT GOING TO KEEP HAVING THIS CONVERSATION.”

I paused. Knowing that by heck I needed some time out even if he didn’t, I offered him twenty minutes on his precious wii (which turned into forty). The characters of Animal Crossing don’t mind if he asks the same question over and over and over. I do.

I am also waiting for a phonecall from the police officer investigating my case this morning. That is probably not helping my stress levels either. And I read someone’s lovely blog post about when she had her babies, and it made me want to cry, or smash something – I’m not sure – because I never had any of that. I don’t even have any photographs, because the ex-husband had stored the (innocent) photographs of my babies, my children, with the indecent images. At least, I assume he did because the police, during that investigation, took all the disks and I never got any back. Still makes me nauseated.

Why does this stuff come all at once? 

So I have turned to my Julian of Norwich book, which happened to be sitting beside me, open at the page of one of my favourite passages:

‘He showed me a little thing, the size of a hazelnut, in the palm of my hand, and it was as round as a ball. I looked at it with my mind’s eye and I thought, “What can this be?” And answer came, “It is all that is made.” I marvelled that it could last, for I thought it might have crumbled to nothing, it was so small. And the answer came into my mind, “It lasts, and ever shall, because God loves it.” And all things have being through the love of God.

In this little thing, I saw three truths: the first is that God made it. The second is that God loves it. The third is that God looks after it.

What is he indeed that is maker and lover and keeper? I cannot find words to tell. For until I am one with him I can never have true rest nor peace. I can never know it until I am held so close to him that there is nothing in between.’

Julian of Norwich, c.1400. From the book Enfolded in Love, containing modern English translations by Sheila Upjohn from Julian’s book Revelations of Divine Love.

My thoughts exactly


I have been thrust into homeschooling an autistic adolescent. HRH has not taken too well to this. Neither have I, truth be told, but I have been determined to do my best, for my boy’s sake.

You don’t get second chances at childhood.

Part of Autistic Spectrum Disorder  is enjoying things the same, all the time. Every little thing, if possible, becomes part of the ASD person’s own little universe.  The move has thus been very disruptive. After Wednesday’s three-hour-lunch debacle by the 2012 Olympic Faffing Champion, among other things, last night I laid down the law (when I lay down the law, you don’t mess with me – even HRH gets this).

Last night, before bed, I reiterated that home school must be done the following day. No ifs, no buts.

Home school.

And you will focus. No wii until after school, mister!

So this morning I was awaiting His Royal Highness to descend from on high when the door suddenly opened and in walked a boy dressed in school uniform. My anxiety over whether we were going to get anywhere with ‘no-ifs-no-buts-it’s-home-school-mister’ was immediately dispelled and I laughed for the first time in a week. He grinned (the golden smile!) and, breathing a sigh of relief, I thanked God. It has obviously made it into HRH’s head that we were doing school today!

We began with a computer facial expression game called Rubberface, where you have to correctly identify the emotion that the face is displaying, differentiating between happy, sad, angry and scared.

Then we did this:

Reading the instructions. Supposedly developing literacy skills but actually more a test of gobbledegook-translation ability.

First, we screwed the legs in place, and I tried to explain why saying “I’m good at screwing” might be misunderstood if you said it out of context (as kids with ASD are wont to do).

More instructions. More gobbledegook. Mind you, the last thing I put together had instructions in Mandarin. DIY interpretation is one of the lesser-known spiritual gifts.

We put the bottom on the wrong way round, but didn’t realise until the end when there seemed to be a bottom shelf missing, so we had to take it off and turn it round. I say ‘we’. I mean him. At that point my role was more supervisory (in the grand British workman’s tradition).

It is nothing short of a miracle that I persuaded HRH to let me photograph his hands. He has a phobia/obsession over cameras.

A handle, which HRH was enormously keen to hang towels on.

Ta daaaaa! We should work for Ikea.

So proud of my boy 😉


HRH’s SEN Statement says that he needs ‘lots of encouragement’.

‘Encouragement’?

Is there a patron saint of encouragement? She (I feel it must have been a ‘she’) took her lessons from me. For the past two hours I have been trying to get the boy to eat some lunch. I am wondering if tearing my hair out would be a good look.

Forget the EU winning the Nobel Peace Prize. I should get the Nobel Prize for Encouragement.

With all the outpouring of grace in my life (credit where credit’s due) I have not lost my temper. My mouth is just set in an unusual manner. A bit like this:

McKayla Maroney, US gymnast, after she sat out her vault and missed Olympic gold

I had to phone and cancel my OU course this morning, due to these ‘unforeseen circumstances’. I can start again in February, they said. This has also led to the above facial expression becoming pretty fixed.

Aside: McKayla Maroney is one of my favourite gymnasts in the world. She is wonderful to watch. No wonder she was disappointed with herself at the medal ceremony. I hope she wins the vault gold next time around. I never got to see the Olympic gymnastics, but I did get to see Britain win gold in the team showjumping after a baited-breath jump-off against the Dutch. One of the riders was Nick Skelton, whose poster I had on my wall as a teenager (I liked horses, not men in their 30’s – just to be clear). He is now in his 50’s and one of the oldest Olympic medallists. Fantastic experience! 

I’m still waiting for HRH to finish eating… <sigh>


The law states that full-time education is compulsory for 5 to 16-year-olds. Yet I am still waiting for our new local education authority to have their ‘meetings’ so that my child can attend school. Not even just the one meeting. It has to be two, so I was told. Each type of meeting only happens monthly (no, I am not making this up). So far, this all-powerful, unknowable ‘panel’, whomever they may be, has had one meeting, as detailed in my earlier post.

My son’s caseworker has buggered off gone on annual leave without even speaking to me (literally, I have never spoken to her) and yesterday when I called and spoke to the manager, she said, “So, looking at the notes, your son has been at a mainstream school until now?”

“No!” I cried. “He has been at special school since he was five years old!” All the information was right there in front of her in black and white from the previous school, yet they had still managed to get it wrong in between copying it from one piece of paper to another.

“Oh, I’d better change that, then. That might affect the results of the panel’s meetings…”

Astonishing. I began to wonder if social workers are not born like ordinary people, but bred somewhere in laboratories. I ended up telling her I felt like I was banging my head against a brick wall. She didn’t respond (there’s that indifference gene that they’re bred with). I phoned a solicitor and got some legal advice, so we’ll take it from there.

Frank is loving his new job, so that’s wonderful. The girls’ new school is one of the best schools I’ve ever seen and it’s a Christian school to boot! I love our teeny tiny crooked little 200 year old house. I have a new Welsh dresser, and a new rocking chair. And I’m managing on the sorting boxes and housework front. Thank God for http://www.flylady.net/ So we have plenty to be thankful for!

FlyLady. She saves my bacon on a daily basis.

Unfortunately this has and will affect my ability to blog for the immediate future. Please stick around – I hope to be back to my usual output soon. If you’re of a mind to pray, please keep this situation in your prayers (alongside all the other **** that I’ve blogged about previously that we’re still going through).

Is there anything for which you would like prayer?

I’m off to listen to Ann Voskamp’s One Thousand Gifts again while I do more sorting/housework/educating. I think I need it.

Let the peace of Christ rule in your hearts… And whatever you do, whether in word or deed, do it all in the name of the Lord Jesus, giving thanks to God the Father through him.

Colossians 3:15,17


You could be forgiven for thinking that not sending your child to school is illegal. Parents can be prosecuted for not sending their child to school.  But if you move to a new area with a Special Needs child, the Local Education Authority can – seemingly – take their own sweet time to figure out the bleeding obvious, i.e. that a child who has always been to a special school needs to continue attending a special school. It ain’t rocket science. In fact, rocket science would be more straightforward.

Two weeks after we arrived,  the LEA ‘panel’ has had a meeting to determine whether to keep HRH’s Statement of Special Educational Need as it was written by the previous LEA, or whether to amend it. Bright sparks that they are, they decided to leave it as it is. If they had asked me, I could have told them how accurately it had been created in the first place. After all, I’m only his mother.

I’ve been trying to contact the so-called ‘caseworker’ for over a week, to get her to explain to me what the heck is going on, but to no avail. She has left two messages on my mobile but has not called my landline. The woman promised to call me yesterday. Still nothing. I rang and spoke to her colleague this morning, only to be told ‘these things do take time’. Funny, because when I first moved to the previous area, when HRH was five years old, the local LEA there sorted it all out very quickly, with due respect to my knowledge and authority as his parent, and with care and attention to my son’s needs.  It is just as well I am not in paid employment. I would have got the sack by now because I have no choice but to have my son at home.

Still, yesterday I decided to take the plunge, and in the middle of all the sorting of boxes, tidying and usual housework that ensues when you have three little monkeys, HRH and I went to the supermarket and bought the ingredients for some buns. When we got home, he made them, with a little help from me, thus learning a little English and Maths and Science all in one. I also got him to wash up the dirty utensils, so that he learns a little of how to look after himself. He enjoyed himself. I loved seeing that gorgeous grin. It brings light to my heart (not kidding, in comparison to his stares and glares, smiles are golden!).

Heavenly Father, may I make the most of each day, whatever happens.

Title is a quote from The Hitchhiker’s Guide to the Galaxy, which I am revisiting on my Mp3. It brings some light relief 😉


Just a quick post because although we’ve moved successfully, we have no proper internet yet and I’m using a dongle.

 

Thank you to everyone who gave me words of support. The move went to plan. Kay was, again, a godsend. HRH survived, bless him, and is now happy with his new telly and second-hand wii.

 

I was exhausted and spent the following day in bed, sleeping, hardly able to move. I get like that sometimes. I don’t know why. Leftover from my teenage years of illness maybe.

 

Frank has just gone to his first day of work in his new job and I have an appointment to see the SEN team to talk about schools for HRH. Frank tells me that the only special school around here is for ‘profound and multiple learning disabilities’, which HRH doesn’t come under, and that all other SEN kids go to mainstream. I just laughed…

 

Watch this space, there may well be a blog post on that!