“Life is a rollacoaster you just after ride it”

So I am dusting of the cob webs and writing my post today for undiagnosed children’s day and you can check out what’s going on everywhere else today too  ‪#‎itsamystery

April 2006 just a normal day on the market stall when serving one of the stalls oldest costumers she said to me “This baby is going to be special and change your lives forever”  I didn’t know I was pregnant we had only agreed to have another child a month before but by the end of day I had done a test and it was positive.

If I really think about it this is when I stepped on the rollercoaster for the first time as my pregnancy was not the kind of pregnancy you would want. Fast forward and Archie was born at 37+ weeks normal delivery.  We had some feeding difficulties and he was born with a club foot at 6 weeks old there was concern due to his head circumference it had grown at an alarming rate.

Doctors after scans could not tell me why my son’s head was growing at an alarming rate and why he was presenting in this way, development was becoming apparent that it would be delayed and again he was tested for many things all showing normal or negative.  I use to drive my self crazy sat on Google wondering and reading all about different conditions that my son may or could have, going back and forth asking doctors questions but even the medical profession couldn’t  give me answers and this journey on the rollercoaster became a very lonely ride.  Archie has profound and multiple learning difficulties, cortical visual impairment, Epilepsy, Archoniod cyst on the frontal lobe of his brain, mobility issues, gross & fine motor skills are impaired, sensory processing difficulties,  but each part of the jigsaw puzzle didn’t add up and this was frustrating it was like tying to do a jigsaw puzzle but too many pieces were missing there for you couldn’t see the picture. The rollercoaster became a very scary & frightening place to ride on your own and I just wanted to jump of but I couldn’t this was my new life a life I had never asked for, a life that for some reason we were given.  Many times I wanted to give up & give him back but I just couldn’t I had to face head on what was coming our way.  Archie was a little boy who needed so much help and I couldn’t give him that help on my own, he needed support from the physiotherapist, occupational therapist, speech & language therapist, health care system, education system, visual impairment specialist, neurologist,  paediatricians, dietitians the list was endless and this became so over whelming, while Archie was having all this support I felt I had non and we were the only ones going through this I only knew a few other people with disabled children and there children had a name for their disabilities.

Then 3 years ago I came across swanuk and all of a sudden I was not alone any more they’re was more of us with children that were undiagnosed my rollercoaster ride was no longer scary, frightening or lonely it became a ride I enjoyed was fun exciting and full of families sharing their experiences together. My rollercoaster journey will continue but at least I know we will share the highs, lows, dips, the big hoops together and it will never go back to feeling lonely again because I have my swan family to help me. please help this to continue by watching our video of lots of children having fun and if you can spare some time  donate the price of a cup of coffee this will also help other families become less isolated and alone.  http://youtu.be/XVQW1JY8JJ8

Dear Social Services

Originally posted on swanfreddie:

Dear Social Services

Do you know how hard I found it to pick up the phone and ring your team asking for help with my disabled son? Do you know how guilty I felt calling you to arrange a ‘child in need assessment’ on my child because i’m not coping with him anymore? Do you know how desperate I am for you to help my family? It wasn’t a decision I took lightly. Let me explain why things are so hard so maybe you’ll understand that me and my husband aren’t just bad parents but in desperate need of help with our difficult situation.
You see, our son Freddie is severely disabled. He relies on me and my husband 24/7 for his care needs. We have become his legs as he cannot walk, his voice as he cannot speak and his hands as he cannot use them properly, We are his…

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Brian Lamb’s Top 10 Tips for Engaging Parents

Originally posted on Special Needs Jungle:

Debs writes….

brianAs you know, I’m co-chair Kent PEPs (Kent’s Parent Carer Forum).

Last month, we held our first Conference for Parents and Practitioners to promote the value of co-production as this is such a key theme of the Children and Families Bill. We were hugely fortunate and managed to secure Brian Lamb (author of the Lamb Inquiry) as our guest speaker for the day. If any of you have had chance to meet Brian, you will know how inspirational and passionate he is about the value of parental engagement. One parent came up to me after listening to him and said “wow, he really does get it, doesn’t it?” followed by “Let’s hope everyone took notes in there”.

Being the cheeky northerner that I am, I asked Brian if he would produce his Top 10 Tips for Parental Engagement (if you don’t ask, you don’t get)…

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Fair Do’s

Originally posted on Love, Belief and Balls:

Yesterday, I was contacted by a long standing member of the Get Steven Home group. She was looking for advice and also asked whether I would write about the latest development in her son’s care package. She was in despair and seriously considering giving up caring for her son at home because financially it has become impossible. She asked to remain anonymous, so I’ll call her Sue and her son, Gary. This week she received two letters from her local authority. The first one, received on Monday, was headed: “Fairer Access to Care Services” and informed her of changes to Gary’s care package, following the “award” of a personal budget. The second letter, three days later, was headed: “Fairer Charging Policy” and informed her that Gary would now be expected to make a financial contribution to the previously free of charge, outreach services. You can probably guess where this story…

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Fair Do’s

Originally posted on Love, Belief and Balls:

Yesterday, I was contacted by a long standing member of the Get Steven Home group. She was looking for advice and also asked whether I would write about the latest development in her son’s care package. She was in despair and seriously considering giving up caring for her son at home because financially it has become impossible. She asked to remain anonymous, so I’ll call her Sue and her son, Gary. This week she received two letters from her local authority. The first one, received on Monday, was headed: “Fairer Access to Care Services” and informed her of changes to Gary’s care package, following the “award” of a personal budget. The second letter, three days later, was headed: “Fairer Charging Policy” and informed her that Gary would now be expected to make a financial contribution to the previously free of charge, outreach services. You can probably guess where this story…

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There is always something or another

Hi its been so long, where has the time gone, I won’t bore you as I have a headache just thinking about it.  But here is a little !!!

The last few weeks things have been a little crazy with the house move and my poor father been in and out of hospital since Christmas.

Now we have moved things should improve?  or so I was told from our last contact we had with a social worker (back in October 2012) her words were   “once you move Archie’s sleep issues will be resolved”  I asked my self how?

So yes we are in the new house and Archie has a big enough room to do any adaptations too it, and yes having the lift is amazing and also having a staircase wide enough and not steep Archie can practise them and is doing very well with this. We are only 7 weeks in to the house move and sleep is now worse, of course it would be because its new surroundings, But yesterday we had the arrival of a new bed that doubles up as a changing table and moves up and down. we had the OT come out and talk about the options of padding his room and things are going ahead with that, great finally after 4 years, wouldn’t do it in the old house because we were moving to a purpose-built fully adaptable home didn’t think it would take 4 years to get in though.

In the meantime while waiting for the house to be built by our local housing association  we went through a pilot for individual budgets in social care and due to our difficulties with sleep I asked if we could use the allocated hours we were already receiving as a (direct payment to spend on a short breaks) could be used on some designated over nights.

The answer was no !  I have written other posts about this http://wp.me/p28kuB-6P

We are still waiting answers,  Today I received a few calls and still no one has answers to why I can’t spend it on respite. Then next phone call was from the admin lady at the complaints department telling me she had received a e-mail asking for up date not sure who was asking her but I didn’t like what she told me next, that my stage 2 complaint I started in December 2012 against the social care was again delayed due to staff redundancies and no services managers available to review the reports (judicate review)  that had been filed. If you are not aware the guidance is 25 working days start to finish but not in my case its been 21 weeks,  I am not allowed to see the report until a service manager has had time to respond, nor can I go to stage 3 until I receive the report. With all this going on and no social worker or key worker things started to get hard I was juggling been a parent, a carer, an advocate and a keyworker and all my time is taken up with phone calls, e-mails, meetings, my work as a parent went on the back burn and I don’t mean I neglected them so they became “AT RISK”. I just meant the everyday things you do as a parent, and the bits like  having fun, days out, the cuddles on the sofa, instead any spare time I get its spent reading, planning, doing accounts for the PAs I employ or trying to even find a PA the therapy, skilling myself up in areas that would help me understand the systems, and the law, I often find myself up against. I ask whether the new reforms is all it’s cracked up to be right now I feel they are setting families up to fail. personalization maybe on the governments agenda but the local authority in my area thought they were ready and at one point I would have said yes they were , I played a great part in parent participation and sat on the steering groups took part in helping the LA apply for pathfinder status ( and we are one)  how ever all the people who were the driving force behind moving forward have now either retired or made redundant or moved onto other areas and jobs, so what now I really don’t know,  I am scared because for 4 years these people have worked hard , I have worked hard engaging in the local parent forum working in partnership with services and building my skills and resilience and now today I have been told personal budgets isn’t happening anymore it was a pilot and it’s too complicated so we aren’t doing them.

I ask myself why I bothered like I have asked myself so many times. I believe this is the way forward I do I really do especially to achieve better outcomes for families and disabled children but not at the expense of a persons mental health, or even that of a sibling that feels so neglected that his mums time is spent so much fighting battles.

Yes we have moved to a house that meets Archie’s needs now and can do in the future but does it meet my needs and my other childs needs maybe it doesn’t. We now have a new fight because this house is further away from Archie’s special school and transport wont take him anymore to school because we have moved closer to the other primary special school. Both schools can meet his educational needs but my Archie has been at his present school part-time since September 2009 and then full-time since January 2010 after a tribunal said he needed fulltime education in a setting with 70% of his day with a 1-1 otherwise he would regress.

Where does this fit on the EHCP  and getting ready for the new reforms and giving parents control, the reasons behind their decisions on transport is  not good use of resources, that the extra journey time could have significant impact on Archie.

I ask what about the significant impact on moving schools, friendships, teachers, surroundings. Not to forget that after nearly 4 years in this setting he is only just making progress especially with his eye contact, and communication this you can’t put a price on.  The only reason for not giving transport is to save money and I am sorry this just isn’t good enough. This fight I believe will continue because in the long run this could cost 3 times more if my son moves settings and then starts to present with challenging behaviour, he is happy, he is making progress, he has friends is this not what an ordinary life is about and the whole reason behind the new reforms ( http://webarchive.nationalarchives.gov.uk/20130401151715/https://www.education.gov.uk/publications/eOrderingDownload/Green-Paper-SEN.pdf .

Article 8 & Hob Nobs

Originally posted on Love, Belief and Balls:

A lightbulb moment.

Following yesterday’s post “Article 8 & Jaffa Cakes”, I’ve had lots of Twitter and Facebook conversations and even phoned the CQC for an opinion. And once again, I’ve realised that I’ve bought into something where the reality is very different from the presentation. The whole business of the recording logs is arse about face and I’d fallen for it.

Q: Why does someone have a support package?
A: To be supported in having their needs met.

Q: Why does the person receiving the support have to have their life logged and recorded?
A: They don’t.

The bottom line of recording a client’s life is arse covering. The regulator expects it. There may be insurance implications. Let’s not kid ourselves that the primary function of the logs is to benefit the client. And yet, that is how they have always been presented to me. In fairness, people have…

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