Wednesday, November 04, 2015

it never rains, but it pours.... good things

I haven't posted in ages - summer holidays were very busy and back to school in the first week of September. So much has happened it's difficult to remember the sequence. I'll dive in here...
Zack had a good Summer Camp - a week in Dorset. Calvin and I went camping which was a mixed experience because the weather was quite extreme, tho' we did have one beautiful day.
Our time away on holiday as a family was also mixed, but I'd say overall a positive one. We travelled to Slovenia with friends and their four children were a good influence on ours - showing the boys how you can 'do chores' and have responsibility without kicking up a fuss or having a tantrum because you've been told to do something. I think the peer pressure was also good because everyone had a job to do.
The plus of that is that we came home and Zack made a 'chores chart' which is stuck on the side of the fridge and everyone has jobs to do. That doesn't mean that they don't argue about doing it, or that anyone actually DOES anything, but it's a start.

Schooling:
We came back anticipating that Zack would 'phase out' of his current school and start attending the remedial school in East Finchley on a full-time basis. This only lasted for a week because we got a call from St Chris in his second week at school to say they'd like to see him for a full day - time in his 'future class' and time for an assessment. This went ahead the following day, which was all very sudden, but could not have gone better. Keith was very impressed, and we were able to spend more than 40 minutes talking to the SENCO and her 2IC.

We were offered a place, starting on 2 November, so Zack had the remainder of the half-term to 'take his leave' of St James. His departure was measured and kind - he had a chance to make individually designed biscuits for each classmate, which he loved - he was able to craft his "goodbye', his way. That was a gift, and entirely because we were given the time. I've learned a huge lesson about not rushing into things, taking action because life is unbearable, patience such an untenable request.

Zack started at St Chris on Monday. It's been "fine". But today he had a run-in with the bus driver. He wanted Zack to stay seated, with a seat-belt for the entire journey. Zack wants to be friends, he wants to interact. He wants to hang with the teens, like he does with teens who babysit, but the highschool kids on the bus don't want him to be in their faces. They moved, so he moved. Bus driver wants him to stay seated. Predicament....

Tuesday, August 04, 2015

why? OT why ?

So the Psych says, he's got sensory processing issues. My niece on my side, and my nephew on my husband's side, have both got sensory issues, so I'm thinking "Yeah. I can see there might be a link". I put everything I have into finding an OT - it's insanely scarce in London. I ask everyone I know who might be able to help, even a friend whose son has Downs Syndrome that I haven't seen in 6 years. Slowly word trickles back, but there's not much. And then when I'm feeling desperate one evening, I get an email from a friend of a friend and BAM! I have a name. It's an OT in Mill Hill - not far from me. Only 18 minutes drive. Whoohoo!
I make an appointment, she sounds great.
I meet her. We talk. She is very sincere and keen to help.
And yesterday evening I take Zack. He goes in for his assessment. He is chatty and keen.
I sit outside for 30 minutes. Then I go in, and she says, she's baffled. She says he's absolutely fine and has NO motor-skill issues. She says he is completely well-developed and was quick at all the tasks. We talk for a while and she says she thinks all his issues may be behavioural and emotional, linked with the academic environment.
...
..
.
WHAT !?!?!?!
.
..
...
I don't know what to say. I want to scream and cry. I suppose I should feel relieved that it's ruled out one factor, but part of me is really sad, as OT is fun and creative. And it would have been a great foil to the muddy, messy, painful world of therapy. Zack doesn't want to talk to a therapist like the one he had. But if the OT is right, that's what he needs most - more behavioural therapy, more psych.
And to top it all off, he was listening at the door while the OT and I were talking (not great), and wanted to know if he could go to Boarding School (!). He was insistent that that's what we'd said, and that's what he heard. I denied it, but he was convinced. Bit of a yucky outcome really. I explored it a bit on the drive home, "Have you been thinking about boarding school before ? Where did you hear about boarding school? Do you have a friend who is at boarding school? What do you think boarding school is like?"
He doesn't have a friend at boarding school. Not that I know of.
We discussed the ins and outs of boarding school and I also said that he was a bit young to go.

I feel so weary about all this.



Anyone want to buy two enormous books on kids with sensory issues ? ahem.

Monday, July 13, 2015

Weary but still moving forward

So the past few weeks have been decidedly up and down. Going back to school on the 1st of June, and kicking that off with the Clinical Psych's assessement seemed to usher in a phase of miserable in the school environs. It's funny how you don't realise how good things have been until things are really, really shit again, and you feel like, "what the hell is going on? are we back at square one?".

There's always something, and at the moment it's one little boy in Zack's class. It's hard to unravel what happens but I'd say that Zack winds him up, but also more importantly, that there is stuff going on in this little chap's life and he doesn't have anywhere to "put" it. His mum and dad split up a few years ago, and daddy has a new girlfriend. His younger brother is a stellar little football player and has recently had trials at one of the big London clubs. You can understand that just one of these things would unsettle a boy of 8 or 9, but together they're pretty insurmountable. And you know what that means - find a target and put the negative crap in your life, there. So Zack has been the receptacle week-after-week of this boy's shit. He goads him, he blames him, he uses him as an emotional dump.
Have I spoken to the parents ? No. Why ? I am so, so, so dog-tired of explaining this to people who really don't care.
Everyone just wants good little kiddies who are no trouble at all.

Everyone.

On a more positive note, Zack has had a significant amount of "reading support" of school, and it has made a massive difference. We have a son who is keen to read on his own - and I am amazed! Initially it was just reading the children's Storybook Bible - lots of pictures and not much text. But this past week he's delved into the Beast Quest series. They're books that he's had lying around for years but just couldn't read. All of a sudden he's demolishing them. This weekend he read all 8 chapters of one book, and I've been instructed to got the children's bookshop and get the next one. Yessir !!
Interestingly I see he reads the words aloud to himself - not silently in his head. But I thought he was reading the storybook Bible silently... I'll keep a look out and see how it rolls. I'm just so impressed at the progress. Of course, we're making a big fuss of this new skill.

Calvin is reading happily too, however it's competitive and not so much for pleasure. He's ploughing through Roald Dahl's George's Marvellous Medicine. And is terribly keen to harvest the points he know he'll get for each page he reads.


Points you ask ? yes, we have a point system for the boys. It's directly correlated with pocket money. We give points as a motivator for alot of things eg. good behaviour, considerate behaviour, kindness, bringing plates to the kitchen after a meal, reading, correcting behaviour (eg. teaching Calvin that skid-marks in your underpants aren't necessary), listening well, etc. Initially we'd started out with a add and subtract system, but the therapist felt that Zack needed to have ONLY successes on that board, so we don't subtract points any more. Children know that "consequences" are really just another word for punishment because they aren't empowered. So we continue on the points system.

On the schooling front, we had a surprising breakthrough last week Wednesday - I had a call from St Christopher's to say that they'd like to meet Zack and set up an assessment date in the new term. I was blown away and soooo relieved. That's persistence for you - I've written to them faithfully whenever we've had information to add, and tried to keep them up to date with what we know, and when they can hope to see more.

Zack and I paid Limespring a visit last week too - for a walk around, and a chance to see the facilities himself. Denise (the head teacher) was excellent - she addressed him directly and made him feel important and at ease. We've put them down as our Plan A for the start of Year 5 - that Zack will either attend Limespring in addition to St James, or go to Limespring full time. A big concern is socialization, but that's a hoop we'll jump through once we've got all the pieces in place. We're also anxious about transitioning. How will Zack cope with changing from one school to another, and potentially a third, if he is offered a place at St Chris? How do we make it as smooth as possible, while supporting his learning needs ? It's complex.

Today he came home from school with a piece of paper with everyone's names on it, and someone (apparently the other Zach in his class) had written 'goodbye Zack' at the top of the page. It's a tough one because we HAVEN'T said he's leaving the school.

It's been a very rough hard bedtime. He has been MASSIVELY O.D.D. (Oppositional Defiance disorder), shouting at Keith, "Dad is an idiot!"
And, "Shut up" at me. He's just upped the ante more and more. Screaming at us, "you don't care!" "you are such meanies!" "Don't you ignore me!", and 'saintly us', we come back time and again saying, "your behaviour is not okay."
And "we don't have to give you attention if you treat us like this."
hell, it's just another episode.
Now he's screaming, "I know what your'e feeling Mom. And you should feel like that!"
Uh huh.
It's so tiring. I hate it. There are days when I could just wring his neck !

Wednesday, June 03, 2015

Ed Psych gateway

So we've been waiting for more than 6 weeks for an Educational Psychologist's assessment to be done so that we can have something more concrete to work with. And more particularly, something that ISN'T inside the psychotherapy "fold", which is where we've felt a bit trapped this past while. Seems like such a straightforward thing to find an Ed Psych and then have it done, but the wait has felt interminable and I was very relieved when Monday rolled around. Turns out she's a Clinical Psych focused on neuro-developmental assessment.
We were given her name by a friend who runs a dyslexic clinic nearby, and although I'd contacted another Ed Psych too, these people are certainly in no hurry to return your call.
Finally the day has dawned. Zack really put his best foot forward and gave it everything he had, calmly and with purpose for all of the 4 hours that it took.
The outcome will present itself in the form of an Executive Report initially, to be followed with a full Ed Psych Report in a few week's time. In the interim we've been given a final set of B.R.I.E.F. questionnaires to fill out which focus on elements that presented themselves from Monday's tests.
It seems Zack has elements of dyspraxia, and dyslexia and a very big slice of Sensory Processing Disorder (SPD) thrown into the mix. He has a low 'executive function' (read this) and low working memory. He is sensory seeking which feeds into so many of his disruptive tendencies. It's quite hard at this stage to separate the ODD, the emotional and behavioural issues in general, this 'executive function' issue, and the SPD needs, as I think the fidgeting and disruptive tendencies, may also just be his inability to sit still, and not be in other people's personal space. But he definitely is defiant because of his response when told to stop. Perhaps, with time, he'll come to understand his own foibles, and that'll make him more able to curb the things that wind people up the most. Poor little chap, it's not an easy journey.
We had a 20 page questionnaire and the school had a similar one to fill in. The SENCO's covering letter said something like :
'Dear X
The parents have been unwilling for us to appoint our own Educational Psychologist...
blah blah blah... '
Keith and I nearly blew a gasket - where the f*** do these people get off ? Honestly ! We have begged and pleaded for them to allocate resources to Zack but NO, he is not a big enough problem. He is only enough trouble for them to write letters to us about, and to put him in detention, and punish by excluding him, but they can't pick up the phone and call the local educational team and ask them to send someone or a few someones. Nope. Zack doesn't have 'special needs' and only special needs get resources. fuck fuck fuck.
It beggars belief.

One of the answers the teacher put on her questionnaire was that Zack's class mates are "fed up" with him. And I thought that was pretty honest. That really does sum up my impression of his peers' feeling toward him. No wonder he feels so lonely and isolated. I was telling the mother of the only special needs boy in his class yesterday, and she "had no idea" that Zack had any issues. She was also very surprised that he too had been invited to no birthday parties this year, just like her son.

If Zack didn't have us, fighting his corner, defending his myriad **insignificantly big enough issues**, they would write him off and not bother to sort out that fact that he can't read and he can't spell. And he doesn't have a modicum of attention required to get through school. And he constantly fidgets and touches other children. Helllooooo people !!!

I try so hard not to feel defensive.

Thursday, April 30, 2015

More thoughts

I spend a huge chunk of my waking hours thinking about all of this - mulling it over. I'm reading a very accessible book at the moment called "That's the Way I Think" by David Grant, which has been enormously insightful on dyslexia, dyspraxia and ADHD. Obviously our talking and thinking with our therapist and with Zack's is ongoing. I am still leaning on the schooling door, and have an appointment with a clinical psychologist for early June - this will help us to have something more tangible when going to schools and asking for a place. My hopes were, and still are, that we'll be able to find Zack a new school for year 5 but... it's going to require a miracle. Somewhere.
In the meantime though, I've been aware for some time now, that we only dwell on the negative and the difficult and the challenges. So much has happened in the past few years that it's almost eclipsed the happy memories of the early years with him. So I've started going through the archives and printing photos from 2011-2015. It's important for us all really to remember the happy, bubbly boy that still is inside there somewhere, and hopefully with the visual reference make it more possible.
As such here follow a few :
Christmas 2014 - looking a little bleary eyed but delighted 'the day has dawned'

scallywags in one place, standing still, looking at the camera – a rare occasion

Monday, April 27, 2015

THE LOW DOWN

We got to a point where we really needed more answers so we took Zack to a psychiatrist, recommended by the psychotherapists. She has diagnosed him with some autistic traits (so he's neither autistic, NOR on the autistic spectrum, but exhibits some traits - which, now that I've done quite a lot of reading, are common in MOST HUMAN BEINGS!). He has developed a lack of social awareness and empathy, a lack of impulse control, obstructive, confrontational and non-compliant behaviour - whahey ! it's not rocket science.
Zack is suffering from depression, but he is also suffering from despair. No surprises there!
The sad, sad news though is that we cannot medicate him... we can't help him by removing the highs and the lows chemically. He has to keep going, however hard it is for all of us. No drugs - it's too risky. We were gutted to hear.
She is sure he doesn't have ADHD nor is he bipolar. That's something! a little twinkle.
He has O.D.D. (Oppositional Defiant disorder) which basically comes down to a 'naughty child' label. It's negative and disruptive behaviour aimed at those in authority, particularly parents and teachers. Apparently it's very common in kids with ADHD... BUT Zack doesn't have ADHD. hmmm....
At some point in his early emotional development he has gone off on a different path. Some of the resulting behaviours have now become quite entrenched and will be difficult to unlearn. She was optimistic: it is possible with the “right” support, and we hope that he’ll be able to find his way back to a ‘normal’ trajectory, or at least learn coping mechanisms to do so.
She said the very best thing we could do now is find him a new school which will offer more emotional support and change the approach to his therapy. Guess what I'm doing with my time ?!
It's been quite an arduous journey thus far... who knows whether we'll find a school in time. There are days when I feel hopeless, there are days when I think there's a glimmer.
I recognise that I just have to take it one day at a time. That's all there is.

Saturday, January 31, 2015

HARSH

Hmmm... and we keep moving forward. The last few weeks of January, back at school, have been very up and down. First week was okay, second week was the worst we've had in the past 7 months, and the last week has been better. We were trying to connect the dots about what had pre-empted the terrible week: What changed? what's what what? what? That's what we spend most of our time doing in therapy. slowly un-picking the "what happened" of the past week.
Have you read "The Shock of the Fall"? by Nathan Filer

On the back of the horrible Xmas holidays, I started looking at stuff online. I've also been going through my own personal crisis - wanting to exit, leave the family home, feeling like nothing I do or say is any help. Feeling useless, unappreciated, broken down, hated.
Sometimes I feel like our family is crashing, smashing, disintegrating, falling apart, crisis-ing, imploding, collapsing in very. slow. motion.

This poem and it's corollary were very much on my lips that last January week :
By Philip Larkin
 
They fuck you up, your mum and dad.   
    They may not mean to, but they do.   
They fill you with the faults they had
    And add some extra, just for you.

But they were fucked up in their turn
    By fools in old-style hats and coats,   
Who half the time were soppy-stern
    And half at one another’s throats.

Man hands on misery to man.
    It deepens like a coastal shelf.
Get out as early as you can,
    And don’t have any kids yourself.
Philip Larkin, “This Be the Verse” from Collected Poems. Used by permission of The Society of Authors as the Literary Representative of the Estate of Philip Larkin.

They Tuck You Up
by Adrian Mitchell

They tuck you up, your mum and dad
They read you Peter Rabbit, too.
They give you all the treats they had
And add some extra, just for you.

They were tucked up when they were small,
(Pink perfume, blue tobacco-smoke),
By those whose kiss healed any fall,
Whose laughter doubled any joke.

Man hands on happiness to man.
It deepens like a coastal shelf.
So love your parents all you can
And have some cheerful kids yourself.

(This poem, a response to this one, obviously, was inspired by a broadcaster's attempt to avoid swearing before the watershed when mentioning this poem. It was released online before it was published in any collection, and there seem to be many versions floating round the internet. In any case, it rarely fails to bring tears to my eyes.)

Balance is good. It's nice to see both sides of the coin. I do feel that we fall ONLY into one of them tho', and that is enormously depressing. What can you do or say to make things change ? I have no idea. We are out of options. Out of personal reserves. Out of plans A, B, C, D and E. I don't have a little cat Zee to pull out of my hat. I'm fucked.

I've been in a huge amount of physical pain the last week - I've managed to wrench my neck somehow doing some heavy pulling while training, so my cartilage on my vertebrae is inflamed. horribly inflamed. I've spent days at home, good stints in bed. I've shut everything down. It's been tough with the kids - their little lives continue apace, and mummy being "man-down" doesn't really stand in the way of rugby, football, karate, birthday parties, music practice, school trips, and all the rest of the "must get done's" in their lives. It's further driven me to moments of wanting to just opt out. I have no support - no-one I can turn to support me practically. I have booked the babysitters in for the nights that we cannot miss eg. psychiatrist appointment. But on a day-to-day basis I must soldier on. Regardless.

this is not what I wanted. I want happy times. Times when we laugh together and are happy. there are so, so few of those. We seem to spend so much time screaming at Zack, and him screaming at us. And then us both sitting, late at night, trying to think of new strategies for dealing with his :
. lack of self esteem
. inability to self-moderate
. refusal to comply, follow instructions, stick to the rules
. comfort eating
. need to have a drama about almost everything
. craving for physical touch
. self-loathing after the events
. tantrums in the face of 'boundaries'
. resistance to change
. inability to transition
. insolence, anger, rage and physical aggression
I honestly don't have a fucking clue. I'm just tired. Dog tired.

And to end - I happened upon this website on "parenting strong willed children" by Dr. Laura Markham. And the bit that struck me the most on the parenting tools page, was this item #10 on being HARSH with your children and how it fucks them up. I'm fucked up and I can see a direct causal link. It takes years, decades to fix the stuff that formed me when I was young. I still, at age 43, cannot think that I am worth-ful, have value, should be listened to. I always put myself last, and let people walk all over me, I create the fucked-up relationship that I had with my own mother, in many other relationships, because that's what I "know", and familiar is best when it comes to psychiatry. I hate that. I absolutely hate that.