Open letter

To the family and friends of J's Dad,

I have a feeling that this will be a very cathartic post to write.

Two days ago a friend who shall remain nameless sent me a “screengrab” of a Facebook status left by J's Dad following an email I sent to him.

The email was sent following huge frustration when yet again J's Dad had no money to give us, he agreed when we separated to pay me £200 a month for J – and to be fair he has done this most months bar one in August 2010. The money is usually paid as and when J's Dad has it and recently in amounts of £50 here or there – not easy then to plan financially.

I sent an email to J's Dad moaning about this and also made a couple of suggestions regarding how he could make more of his time here with J. I pointed out that I knew he loved J very much and that having proper 1-1 time together would be beneficial for them both. J's Dad took this as a criticism of his parenting (and to be fair I was critical) and interpreted it as “I have just been told I am a crap father” - a thought he then posted to his Facebook page for you all to see.

The responses are “interesting” to say the least.

To my sister in law who deemed me “the benefits queen”, I would like to point out that since 1982 I have worked non-stop and paid tax. My only period out of work has been since March this year while I help J (your nephew remember) through some difficulties he is having which were impacting upon me in my job. It is interesting that this is your response though – I wonder what conversations have taken place about me for this to be your opinion. I could tell you the REAL reason I left....but I won't because I respect your brother's feelings (and my J's feelings and future) far too much to do so.

To the person who said “serves you right for marrying a girl from Basildon”, remember that “the girl from Basildon” supported J's Dad as he started his business and worked to pay the rent and as many bills as possible while it got off the ground. All done while effectively being a single parent as J's Dad was away so much and also dealing with the initial concerns about J when it became apparent he was not developing in the same way as other children of his age.

To the person who advised J's dad to “see a solicitor asap mate” - fat chance of that happening as it would cost money he does not have, instead he has suggested that I see a solicitor – being “the benefits queen” means I get Legal Aid after all. I have an appointment for September – being on Legal Aid means the services are few and far between.

I know J's dad deleted the status update because he was asked to by my Mum – not before he had clicked “like” to all responses though – interesting that he “liked” the “benefits queen” one but there you go. He says he barely read them – yeah right! I also know now that many members of my family (beyond my Mum) saw the status and the responses and naturally they piled in to the bun fight that followed, more because they knew I would not see it and had no way of defending myself against some of the comments posted.

As always while working in this area today, J's Dad is staying with “the girl from Basildon” who continues to support the business in saving hotel costs up here – a little appreciation of that fact would not go amiss.

Cheers!

Tears and meltdowns

So this afternoon J had a meltdown of epic proportions. I win't go into details about the cause except to say that as always it involved being teased (or even perceived teasing) by another child during play outside in the street.

I knew as soon as J hammered on the door that something was wrong, as I approached the door to open it he began kicking it while screaming in frustration and anger. I opened the door to a sobbing, raging child with the other children looking on in confusion.

Indoors came J still screaming and raging, a dining chair was kicked to the floor and J began kicking the coffee table in rage. I attempted to hold him but ended up letting go as he was screaming "get off me". He was drenched as they had all been having a water fight outside and he was pulling at his clothes and hitting himself.

In between rages and screams I got the cause of the upset (another child had thrown a water balloon at J which had hit him in the side and hurt. This was followed by rages about a boy in school who prior to the half term had screamed in J's ear either to upset him or due to sheer over-excitement - J does not know which but suffice to say he "is not going to school tomorrow Mum".

Can't wait for morning and for battle to commence!

So my plan tomorrow is a meeting with school to sort this out as J does not want to discuss it but clearly needs to if things are to be addressed.

The Green and Sad Eyed Monster

I sometimes wonder what I could have achieved if J did not have autism, if he had been neuro-typical and I had been able to work full-time. It makes me feel sad........

Yesterday a friend and former work colleague achieved something wonderful – she is now a Clinical Practice Teacher and will be training Health Visiting students in the community. I am so pleased for her because I know how hard she has worked to get this qualification. It hasn't been easy for her, like me she is a single parent and she has gained this qualification while juggling parenthood and work. In short she has worked hard for this qualification and so richly deserves it.

I would be lying though if I didn't feel some envy, if I didn't think about what I might have been able to achieve if I had been working full time, if J had not been autistic.

I had no issues while working full-time, there was always space to arrange work, always space to find time to concentrate on paperwork and time for everything despite the huge caseloads. However, this full time work was being achieved at the expense of J who was struggling so much in school and at home. I felt I was not giving him the support he needed from me and decided the best way of supporting him was to reduce my hours. As soon as I went part-time everything became a nightmare which is ironic as it was supposed to make life easier. In hindsight it is easy to see that while my hours reduced, my mindset was still in “full-timer” mode and I had much too high a case load for my hours. This was partly my own fault as I just accepted what came my way but I should have been more aware, should have been able to say “enough”, but I did not.

In health visiting it is vital to have your eye on the ball all the time – I lost sight of the ball as J became more challenging and night times became worse. I was constantly exhausted and stressed about things. I worried all the time about work and was anxious about the possibility of forgetting things. I started to really struggle and eventually this became obvious to all around me, I began to question my judgement and went off sick which began 14 months of being in and out of work. I couldn't cope and self-confidence in my ability to do the job took a massive nose-dive.

The final straw for me was in having not completed two new birth records. It was not the fact I had not completed them but the fact that I had no idea I had not completed them. For me that was the wake up call I needed, I had worked too hard for these qualifications to lose them, I did not want any team to “carry” me and I knew it was time to make a decision about my future. I completed the forgotten notes before lunchtime, then went home at the end of the working day and never went back.

I discussed it all in depth with my lovely GP who was fantastic and warned me not to make any rapid decisions. I continued to see my GP fortnightly for support and discussion, she was super, never rushed me and understood my fears about being in a team and being deemed “not reliable” and also how I did not want to be the one “who is always off sick”. Eventually I made the decision to resign and discussed this with my manager and the human resources department. My manager expressed the hope that I would go in and do some Bank work which I agreed to but to be honest my confidence in myself is shot to pieces and I still doubt my ability to do the job.

Since leaving, my exhaustion is lessened, possibly because I am no longer trying to juggle my anxieties about work with all the anxieties of home. People are commenting on how much better I look and I know I feel better. Some exhaustion continues, I have been diagnosed with Obstructive Sleep Apnoea and now use a CPAP machine at night – with varying success, my nights are still very disturbed by J who is very wakeful at night so I remain tired although less so than I did.

So I am proud of my friend for what she has achieved, and the fact that she has achieved it during a time of great personal stress in her own life. She is a different person to me though and has managed the balancing act that I could not. I just have to accept that my life is not the same and I am not going the same way, at the moment I don't know if I will ever go back which is sad. My whole working life has been in the NHS and I honestly don't know what I will do in the future -it all remains to be seen.

Temper and meltdowns

In the last year J has:

Slammed his door numerous times with such force that the door frame is coming away from the wall! I am considering thre advice of the SENCO to "take the door off"!

Threatened to jump out of the upper window several times and sat on the windowsill, it's winter and the windows are locked but in the summer this is more scary as they are usually wide open.

Damaged his Nintendo 3DS by jumping on it after becoming frustrated by a game (my fault as I was in the bath and didn't realise he had it).

Banged his head during numerous meltdowns and hit himself.

Last week he took a knife from the draw mid meltdown and told me "goodbye Mum" (I got it away from him).

J's school are going to offer support - he is more manageable there with one to one support but less so here at times simply because I struggle to keep on top of everything (crap mother alert).

So I am hoping for a CAMHS referral and help to manage his extremes of behaviour because I feel in the dark when it comes to these meltdowns. Do I ignore them? Do I stay with him? Do I try and cuddle him to reassure which would not be easy?

J's Dad feels that J reacts if I am there but all I can think is that being that out of control during a meltdown must feel terrifying and because of that he NEEDS my presence as a safety net.

All in all I am anxious about his teenage years.

Melatonin and sleep.

When J was a baby I had the bizarre notion that I would not give him medication unless absolutely necessary. It is a measure of how far I have fallen from my principles that I bit the paediatrician's hand off when he suggested we give a trial to Melatonin in order to see if this would help with J's sleep issues.


J can be awake until the wee small hours with ease, he finds it extremely hard to settle down at night and we can still be going at 01.30am on a bad night. A recent holiday with his Dad and grandparents saw an even later 2am before he fell asleep. Not surprisingly I am often exhausted - not least because I need to be awake too as J also LOVES food and thinks nothing of climbing onto work surfaces in order to reach any goodies which might be on the top shelves. The idea of an overtired kid with balance issues (dyspraxia) climbing any height does not bear thinking about. I am amazed that we are not regular attenders of them local A+E department.

So we now have Melatonin 2mgs for J to take an hour before he falls asleep and although it's early days it seems helpful. The first night J took a tablet he fell asleep next to me at 8.45pm and I was in shock, J was under 2 the last time he fell asleep this early. I literally did not know what to do with myself and phoned friends and relatives...."he's asleep...can you believe it"? No they could not either....

So since that first night it has been hit and miss and very dependent on how tired J is that evening. He is still waking to bedwetting but is settling down almost as soon as he is changed. The latest night we have had since he started Melatonin is 00.15am - a vast improvement upon 2am!
So I am going to continue, I have been warned that he cannot take this drug forever and that it's effects may wear off over time but for now I am going to enjoy it and love the idea that on some nights J is getting adequate sleep.

Disability Living Allowance and the Welfare Reform.

Like many other parents of children with a disability I am anxiously watching the news with regard to the proposed benefit reforms and the plan to replace DLA.
DLA is not an "out of work" benefit, it is instead a benefit designed to help with the costs of coping with a disability either your own or a dependent's.  I have claimed it since April 2009, just after J was diagnosed with ASD. I knew about DLA but had never considered claiming it for J although it can be claimed even if there is no diagnosis. My decision to claim came from the paediatrician who advised I do so as there would be cost implications for J both now in the future. I applied and was awarded Middle Rate Care to reflect the fact he needs frequent support during the day and Lower Rate Mobility to reflect his need for supervision by roads - this means I recieve £267 a month for J - a massive help as I had decreased my work hours several months before in order to support J who was struggling in school and at home. In addition I also recieve a top up payment to my tax credit - all in all I was better off by nearly £450 a month. This allowed me to attend various support groups with J and a special needs centre nearby which ran a "stay and play" group.

So what does the DLA and tax credit pay for?

In my house it simply goes into the pot with my salary to pay the rent, the council tax, the electricity, the gas and to fund extra activities for J.  It means I can be around for him to offer him the additional support he needs, he has one to one support in school and finds social situations confusing, he would need the same support in an out of school care setting.

I spend time sorting out social confusions with him, I do homework with him and help him with maths, literacy and other topics. J has mild to moderate learning difficulties, he is not achieving on a par with his peers, only since he started taking medication for his ADHD has he been able to make massive progress in reading - it is a joy to hear him read to me with real meaning and comprehension.

The DLA form is massive - a 40 page form which wants to know everything about the disabled person in miniscule detail.  Can they walk, can they talk, do they need supervision, can the disabled person wash and dress themselves or do they need help? What help does the disabled person need?  Is it simply supervision and routine or do they need total support? How long does this take in minutes, how many times per day? What about night time? Does the person need support and supervision at night? Who is the GP, who is the Consultant, who can DWP talk to if needed? Can they have the medical records?

The form is so complex that organisations such as the CAB devote time to helping claimants complete the form. J's initial award ends in March this year and the CAB have just help me complete a new one - due to J's sleeping issues and night problems such as bedwetting the advisor said that I should be receiving Higher Rate Care which is a measure of how bizarre the current reforms are. If I receive Higher Rate Care I will be immune from the cuts as carer of "one of the most disabled in society". In fact Higher Rate Care simply reflects the claimants input overnight - a child could be severely physically disabled and yet sleep all night with no issues making them non-eligible for Higher Rate Care - it's utter madness.

So the cuts, ah yes the cuts! As of April 2012, if the reforms go through as the Government wants them to then those on Middle Rate Care will no longer recieve the current level of tax credit top up, it will halve making the average family caring for a disabled child just over £1440 a year worse off. Those receiving Higher Rate Care will see their level of top up to the tax credit increase - remember that to qualify for Higher Rate Care the child simply needs to have supervision and care requirements at night time. In my case it's the fact that J can keep going until 1-2am in the morning and active until about 30 mins before - yet this could make him elgible for Higher Rate Care payments and deemed one of the "most disabled in our society".

There have been massive protests about the reforms as applied to disabled people and finally it appears the protests are reaching the Government - and they are not happy.  They are hitting back in turn but it's definitely got them talking - even if I largely disagree with all they say as do many others.


I currently await the response to my latest application for DLA on behalf of J and this time if they award less than Higher Rate for the Care component I will be asking them to justify their decision in writing - under current guidelines J meets all the requirements. In the meantime I will keep writing to my MP and pointing out the issues with the reforms. DLA definitely NEEDS reform - but not in this way and the Government need to return to the table and talk to all the disability groups whose comments have been falling on deaf ears for far too long.

First Reconciliation

Today J made his first reconciliation - that's "confession" to anyone not Catholic. It is much less austere than it sounds and merely involved J having a chat with the lovely FrB about something he wanted to say sorry for.  First though we needed some "getting in the spirit" of things which is where Fr B often comes into his own - and today was no exception!

So we had The Parable of the Lost Sheep and Fr B ever a performer announced to the waiting congregation that he and SrC had gone into buisness together as "sheep farmers"!  Apparently they had a "small flock" of about six sheep in the garden but...one of them kept wandering off.

There then followed a small session with the children suggesting ways in which the sheep could be found before FrB said that in fact the lost sheep was in the church and could the children find it. Everyone looked round and high up on the mezzanine level was a cardboard cut out of a sheep with a sad looking face.  A "shepherd" was dispatched to fetch the sheep back down to rejoin the flock, and by the time it reached the front of the church the "sad face" had been replaced with the attachment of the cheesiest grin you have ever seen - the illustration above is the nearest I can get to it but it tickled J who spent the rest of the service giggling whenever he looked at said sheep.
There then followed discussion about the significance of this story and Jesus being called "The Good Shepherd" who would never turn away anyone or judge them but simply welcome them back.

J's "confession" is private so I won't repeat it here but I know what it is and I am proud of him for finding the strength to talk about it. Last week he had to write down what he wanted to discuss and took this with him to see the Priest. After the children had been up there was a public shredding of all the "confessions" to signify absolution - I guess fire would have been too risky on health and safety grounds.  I like the idea of "getting rid of old problems"and recognising that although they may still be things we need to work on, we can learn from experience and spend time trying to be more mindful.

After J made his first reconciliation I decided to make mine - not being Catholic I have never done this before so it was a first for me too. I had a lovely chat with another Fr who was really great and very sensible regarding what I wanted to share. After this I prayed with him and left feeling much calmer - J was incensed that I had been such a long time - who knew I'd been so bad lol.

Fr B then ended by producing his own confession - an A4 sheet of paper covered with typed comments - he reminded the children that he also got things wrong at times.....then opened up the A4 page to show it covered 5 A4 pages taped together - it was as tall as he is. J thought this was very funny - likewise he was encouraged to shred the "confession" and "let it go" after which he did a lap of honour to great cheers around the church!

It was lovely and I have sent an email to Fr B to say a big Thank You for making it all such fun and appropriate to the ages of the children. I said a special thank you for his understanding of J and accepting that he might need extra support.

Lovely day.