Long silence

It's been a long time since I found myself here and shared our experience of "Living, not drowning" with you. It's only now I realise that's because we were literally drowning.

Our battle was long and hard, and many would have fallen, but our inner strength and determination to access the essential level of help and support for our son was the driving force that kept us going.

In September this year, 20 months after raising the issue first with social services and then with Education, our son started a termly residential placement at an autism specific school.

Our lives have turned around, but most importantly HIS life has changed beyond all recognition. He is a different child, still very active and difficult to keep to task, but his level of motivation to be involved in class and lifeskills activities is so uplifting and makes every tear I shed and every ounce of anger and frustration I felt worthwhile. He looks so settled and happy and I feel like he feels he's at home at his new school. The staff can't get enough of him, and are always happy to chat to us and tell us what he's doing/eating/playing with/destroying! I get regular weekly reports from his class teacher and last week we went to his first review meeting. I was so proud of James - every report from every therapist, teacher, carer and support agency was full of positivity and he coped well when his routine was disturbed and he came to see us (the chocolate biscuits I'd stashed away in my bag might have had something to do with that!). When the case officer from the LEA was asked if she had anything to add, she said she had never been to such a positive annual review which delighted me at the time.

It is only now that I think back to that statement that I am appalled. The annual review process is meant to show that a child is achieving his or her potential and should be positive. It's an opportunity to review progress, set goals and discuss areas of need. It shouldn't be doom and gloom otherwise that suggests the placement isn't right for the child.

So I come back here, because I can't help thinking about all those other children who are being let down by the services who are meant to provide for them. I will expand on our experience of the last 20 months from request to placement over the next few weeks and hope that it will help others in a similar situation.

My silence is broken and I need to spread the word!

The wound

I have this wound. It has been there for years, never properly healed, scanning over but never given enough chance to form enough new tissue to recover completely. Sometimes the scab gets knocked off, unexpectedly, unavoidably. Sometes I deliberately pick it, to see if it still hurts. It does. It hurts as much now as it did when it was fresh and new and I was unscarred, untainted. Sometimes it just opens for no particular reason. Blood everywhere when I'm least prepared for it. Occasionally it gets infected and I worry I'll have to cut my arm off. How will I manage? What will it feel like? Once open and sore it takes a long time to reform the scab, the throbbing pain a constant reminder, the affect on my functioning a sign. What caused this injury? Why will I never heal properly? What can possibly hurt this much? Surely there's something that can be done? Is there something wrong with me that makes this so painful? Why? Autism.

A very worthwhile appointment.

So my journey towards securing a decent future for my son continues. I have started looking everywhere and anywhere for support for our case. I think that the stronger our arguments for a residential placement for James are, and the more knowledgeable professionals we have supporting us, the easier it will be in the long term. Right now it feels incredibly all consuming and engulfing.... I went to see James' paediatrician today. I took Edith but left James at school - they've only just returned after Easter so it would have been too disruptive for James to come out of school, but also impossible for me to talk with him there. I was close to tears as I described the witch hunt that has been going on with regards to James' welfare. He agrees with us that Janes is not in the best educational setting for his needs and that he will need lifelong care. It's a hard conversation to have, both as the professional delivering that message and as the parent sitting on the other side. All too often we shy away from the truth, feeling impotent and helpless with no good news. As a medical student you dutifully attend the seminars in breaking bad news, usually to an elderly patient or spouse but little is discussed about dealing with these sort of consultations. The feeling can be akin to one of having that handed the parents a life sentence with no hope for a pardon. It's emotionally draining for the person breaking the news. Imagine how it feels to be on the other side of that consultation. Hearing that the longed for baby you laboured hard for, nurtured constantly for years, loved unconditionally, fought for, watched with a deep pain in your heart as they disappeared into another world as autism took over their young body, will never live alone, never have a meaningful relationship, never produce grandchildren, always need the support of another adult is very painful. The grief has to be processed yet again. I live with this chronic sorrow surrounding James' diagnosis, and every so often the pain intensifies as another blow is dealt. But I have to see the positives in everything, and at least the professional opinion of a highly experienced and well respected paediatrician will strengthen the case for us.

Ray of light

Sometimes things have felt so dark and bleak recently that I've wondered if I'll ever feel happy again. I feel dark and desperate, cold, lonely, isolated and without hope. I feel angry - angry that this is my path, angry that I can't "make it better", angry that the very system that is meant to help us and support us is failing us and angry that I'm made to fight so hard for such minor changes. The system is stacked against the most vulnerable - how can it be fair that those most in need have to shout loudest? Why shouldn't my son be given the opportunities that are denied him through us receiving insufficient respite and hence feeling too exhausted to contemplate outings and visits that require immeasurable amounts of energy and planning to set up? Why should I live in a house that is slowly being literally torn apart with no opportunity to spend time repairing and replacing? Easter is a time when many families spend the dour day bank holiday getting on with some DIY. Or planning a kitchen or extension. We spend our time picking up the detritus that James leaves behind him, akin to Hansel and Gretel following the trail of stones. Any respite we do receive over this period is tinged with feelings of guilt, after all as social services are constantly telling us, the Carers all need a break too and "we" have to look after them. But who looks after me? Who helps us when we're physically incapable any more? No one. It can feel as though no one wants to listen to those who are experiencing the intensity of looking after James first hand.

Today there was a chink of light. A glimmer of hope. The promise of more to come. Perhaps we will see daylight again. 2 years ago I was lucky enough to be referred to one of a handful of practitioners offering a relatively new therapy for children on the autistic spectrum. Today she came to visit us at home, to catch up with James' progress and offer us assistance in any way she can. After explaining where we are with social services and the LEA (and after picking her jaw from the floor!) she has offered to write a letter outlining her findings of her assessment over the last 18 months. It will be a candid letter, emphasising that James' impairments are very severe and that he has extremely challenging behaviour (both of which social services deny) but also outlining the fact that with the appropriate support and input he has a lot of unfulfilled potential and he needs the right environment in which to access this in order to develop lifelong skills. This could be the letter that makes the difference between a full tribunal with battles from both sides and at least some concessions from the LEA that James' current school simply can't meet his needs. I can only hope...

Stalemate

Since my last post, we've had a very interesting meeting with social devices. Unfortunately it was clear that the CWDS are stuck firmly in their belief that we are failing James, an accusation I find insulting, upsetting and unfounded. Their claim that we fail to integrate James into our family couldn't be further from the truth, in fact, every single aspect of our life revolves around James - what time we get up, what food we eat, where we can (and can't) visit, which friends can visit and when, what car we drive, when we wash a load of clothes... Whether James is at home or not, every decision I make (including the timing of loo visits!) is dictated by him. When asked to back up their accusation they used a very poor example that just shows how they have failed to understand James and his level of disability and the impact it has on the whole family. The last time a social worker visited our house it was our carer's birthday. Bea decided to make a card for her and wrote in the card and signed it herself. Apparently when I was asked whether James would write his name I replied that that wasn't appropriate as he couldn't hold a pencil let alone sign his name. Apparently this shows how we don't integrate him into our lives. I sat wide mouthed and stunned. They would rather I had forced him to write in the card, hand over hand against his will? I didn't make Edith sign the card and her functional level is around the same as his...
Other parts of the discussion were equally distressing. Their minutes from our last meeting are inaccurate and full of omissions, so I'm glad we took our own advocate to take notes. She happens to know James very well so could back us up on our views about James. There was some recognition that we struggle to care for James, two younger children and ourselves but no offer of further help or assistance. It has been over three months since I requested a review of James' care package and nothing has changed. We're locked in a stalemate with the very people who are supposed to be helping us.
The time has come to get tough. I'm not going to throw the game, however much I'd like to, but I am going to get the big players involved. Local news. Local government. London mayor. Local MP. I will not be bullied. I will fight tooth and nail for my son and myself. I only wish I was not dealing with a disinterested government and a hidden disability...

Nuclear fallout

Yet again, a long gap has been permeated by a number of disasters/events some of which were mildly inconvenient (crashing the car and driving a Micra rather than a seven seater...), some of which have had long lasting and damaging repercussions (our overnight respite carer requiring 3 months sick leave). I could list the trials and tribulations of the last six months but worry you'll get bored and leave! So I'll briefly outline here we are at the moment, and hope youll see why it feels like Chernobyl...

We had a very difficult Christmas, not that it is ever easy with James, but for no clear reason this one broke us. Well, for us read my husband. He has been a dedicated, level headed father throughout the last 5 plus years when it comes to dealing with James. He can't be faulted (though I try!). He has previously maintained that James belongs with us at home and has never entertained the idea of him living elsewhere. So it was a huge change in tempo when over Christmas he conceded that the time had come to start to consider residential schools for James. Sometimes the battle to get a child a residential placement is around finding somewhere that can meet their needs. In our case it is likely that the battle will be around proving James would benefit from a residential setting, but we're collecting our ammunition and pulling rank. We have an educational review at the start of next term - let battle commence...

The strain that the Christmas period put on all of us led us to plan to request a review of our social care package. We feel that given james' level of need and the fact he needs continuous one to one support during waking hours, we need a substantial support package, in part to ensure James' safety and the safety of the rest of the family but also to allow us to recharge our batteries and have a few moments of "normal" family life. Unfortunately, our request has fallen on deaf ears and we are now in stale mate withsocial services who feel we exaggerate James' difficulties in order to manipulate them into providing more services. Nothing could be further from the truth but they are adamant. We are likely to have to go to mediation to sort that out...

So yes, we're in a nuclear bunker dealing with radioactive fallout at the moment. I'm hoping we'll survive, we have to, but I hope we'll all be intact...

Development

Edith has reached nine months and every day we tick off another milestone. We watch her like a hawk, looking for signs that she is developing "normally" or crucially, signs that refute autistic development. We often video or photograph moments which we think are key. So tonight she sat on the bed, giggling at Bea's Tiny Tears doll and I said "kiss baby". She grinned, leant forward, have TT a big slobbery kiss and, critically, turned to her daddy and smiled. That one subtle, natural, usually unnoticed step in development, a missing part of the autistic jigsaw, is so clearly in place. Joint attention. I've never met a baby who shares their experiences so readily. We know James developed this skill, though I'm not sure it was quite this early and certainly never at this intensity, and we have video footage of him reference pointing, cheerfully checking we had seen what he had. Joint attention is so critical in "normal" development yet it is rarely asked about at this young an age. The CHAT test, which has been validated above 18 months, screens for children at risk of developing autism and joint attention, or rather lack of it, is a major red flag. But at 9 months it's not mentioned in the various developmental checks. Simon Baron-Cohen believes you can tell in the first tear of life whether a child is autistic and I was once sceptical. Now I wonder....

All change

It's been a year of change, with the arrival of Edith, Bea starting school and finally employing a permanent after school carer for James. And as the long summer holiday draws to a close we face yet more changes. Change is hard for people on the autistic spectrum. Characteristically, they find it hard to deal with and disruption to their routine throws the whole world into chaos, making it hard for them to predict what's coming next. We've always felt that James isn't actually that affected by changes, he doesn't seem thrown when we get a reavemwnt cater to cover leave or if I serve supper later or earlier than usual. Overall he's quite passive and seems to cope with these sort of changes quite well, at least on the surface. I'm not so sure how well he's going to cope with the changes coming up at school though. He's been in the same classroom for 3 years mow and a couple of his classmates have remained the same throughout too. But this year he's changing classrooms, entering a class with completely different children and has new teachers and teaching assistants.... I hooe he (and they) copes....

Dipping my toe back in...

Hmmm. The water's still warm! Might have to come in more often....

It's been a long time since I last added to these pages and so much has happened. It would take too long to post a full update but the major change for all of us has been the arrival of baby Edith Agatha in January this year. Needless to say, life has been hectic since then but I feel I'm coming out of the fog now and beginning to feel vaguely in control once again.

A major cause for anxiety had been around James' response to another new sibling - the last time we brought a baby home he spiralled into a frightening and profound regression and "declared" his autism. So it was with trepidation that I crossed the threshold for the first time with Edith in my arms. I am very relieved to say he has taken her in his stride. Well, he covers his ears and gets distressed when she screams but quite frankly I often feel the same way! In many ways nothing has changed for him. We still provide him with one to one care and life revolves around him and his needs. It has been Bea who has made all the sacrifices and bourne the brunt of any hardship. Overnight she went from only child to middle child with none of the positives and all of the negatives. Luckily, if there's one thing that James has taught her it is resilience and she has coped very well with all the changes (although she breaks my heart when she turns to me and says "Daddy looks after James, you look after Edith, but who looks after me?....)