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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Living with the unknown ?

I have always had lots of friends in my life and never really felt isolated or lonely, until I had my son Archie on 14th of January 2007. I knew there was something not right I had that feeling but you put your trust in the professionals.

Archie wasn’t a straight forward baby and came with his little problems but I loved him so so much. Time passed and we knew he had special needs and so did everyone else by now, he started special school in September 2009 at the age 2.5 years, and its here I met lots of other mum’s and dads with disabled children, as much as these became a big part of my life and understood what I was going through and some are really true friends now they had answers for their children, well most of them did and I never felt that I didn’t belong to the group however the feeling of not having answers to Archie’s difficulties or reasons for certain behaviours made me feel different.

I found SWAN UK through someone else on face book in summer 2011 and since then I have really made friends where I do belong we all understand the feeling of the unknown and the feeling of more test been negative.

We face together all the uncertainties and find info out we might never of known about, we share our journeys through our blogs ,we talk, cry, laugh,feel each others pain and help each other through the toughest times. Some of our friendships are so strong even though we have never met  we  know when there is just something not right with one another and we no to check into the group to find out. Some of us swan mums have met up or talked about meeting.

SWAN UK means everything to me a lifeline away from the doctors/consultants/hospitals/specialists.  We no longer feel isolated,we belong to a group who just ‘gets’ what we are about and what we are going through – no one else seems to.  I love the fact that we can share the highs and lows of all our journeys, and we don’t have to explain for the millionth time what issues our SWANS have, so SWAN UK means the world to me ( belonging, understanding, sharing happy and sad times – Building friendships and no longer feeling alone). Help spread the awareness of undiagnoised day this saturday by supporting swan uk. Wear pink or blue take a photo and post to facebook or twitter and join in the fun. Here is a little back ground of some of the tests we have been through.

The tests are the hardest things to deal with, they leave you in fear of what may come back, that you just might not cope with the outcome,  the sick feeling you get while you wait the lengthy time for results to come in, praying they find something wrong so they can start treatment, or not find anything, but then the blow comes back they are normal, NORMAL? what is that and whats next? not even a little something ,no abnormality to go with.   we started with the first basic test

bloods = normal

then a more in-depth blood test = normal

we were told the tests were for metabolic disorders and then left to go home, test again came back normal? this was very upsetting for us as a family. My son was like a pin cushion backwards and forwards for more test.

CAT scan  nothing = normal yet again, onto have a MRI nothing, i  excepted that would be the case and was getting used to hearing that word NORMAL , it was obvious my son was “not normal” he wasn’t meeting any of his milestone so wasn’t developing, he had feeding difficulties , his head circumference was growing at alarming rate, and he started treatment for his club foot.

We were refered to genetics to start test with them. First test was more blood, poor child he didn’t give blood very well it clotted very quickly so was very dramatic for all of us. while waiting for result of this test, I had been on the internet searching for answers, looking for a syndrome my child may fit into. I came across Sotos syndrome a overgrowth syndrome, I asked the consultant if we could have a bone age scan as this syndrome you needed to have an advance bone age, This came back as delayed , What does this mean, I was told its has no significance really so yet again NORMAL?.  I later found out when I asked if I could see and read the report that my child at 2 years 2 months, that some of his bones were advanced by 6 months and others were very severely delayed,  but over all there was a severe discrepancy of his birth age and bone age so over all the configuration of the hand and absence of ossification of the thumb was in keeping of a new-born child , WHAT?

Ok appointment came through a few months after the scan , to see the genetics consultant we had to go through everything again, The pregnancy what it was like, the birth, the first few months and then the 2 years with all the test etc. Eventually the first line of investigation started with some of his chromosome’s to be tested  ( karyotype 46xy) = normal. so samples passed on to have another test (karyotype mlpa (po70)x2   this is to see if there is any deletion or duplication of any of the sub-telomeric regions of all 46 chromosomes = normal. We had photos of Archie taken so DRs could look at them and try to see if there where any facial features or body features that could point them in a direction to test next, we went on to have his PTEN gene tested and it was suggested that he also have a full skeletal survey which may give more clues as to whether it could be a storage disorder, 2 conditions in mind where Alexander disease and glutaric acid urea, these tests could take months and months as there was waiting lists. In the mean time we saw an ophthalmologist as he didn’t seem to respond to anything so thought he was blind,

Eventually i had a phone call a year later from genetics to say  his PTEN gene had come back with a normal results this meant he didn’t have (Bannanyan Riley Ruvalcalba) syndrome. We still hadn’t had result for the skeletal survey yet for the other disorders I spoke of earlier.

His name then went on to the list for CGH(comparative genomic hybridisation) test but there is a very long waiting list and funding isn’t always available. Also a sample of DNA  was sent of to Newcastle to test for Fragile x syndrome, this also had come back negative so told again its NORMAL ?. Other test reports came through that had been done alongside all of the others one in particular   (karyotype) mlpa (p245,GATA4, TNKS PPIL2,SMARCB1)x2, This test checks for microdeletions/microduplications  and this too was a normal result.

i had began to give up and just concentrated on making sure he had all the help and support he needed to develop skills, even though we had no answers we knew all the medical terms for his little difficulties that when put together became very complex issues and global development delay and learning difficulties.

  • Large head (macrocephaly)
  • Club foot
  • Constipation
  • Floppy ( hypotonia)
  • Feeding difficulties
  • Small hands
  • Small feet
  • Re accruing chest infections
  • Bronchiolities
  • Abdominal pains
  • Failure to thrive
  • Delayed bone age, at 2 years old his bones were that of a newborn
  • High arched roof of mouth
  • teeth grinder
  • Milk,gluten,wheat intolerance’s  (out grown by 4)
  • short statue  (but now growing)
  • sleeping difficulties
  • possible myoclonic jerks (epilepsy)
  • random out of context laughing (gelastic epilepsy)
  • stable alterative esotropia (squint)

Eventually he went on to have a EEG that also was normal no surprise there then, Test slowed down and we were just monitored  and seen every 3 months,  In december 2011 we got the results of the CGH test and yes you guessed correctly NORMAL?. On the letter it said  “so in the mean time please keep me informed of any changes with his development and I have now passed you onto the DDD study (Deciphering Developmental Disorders)  I have sent you more information on this thank you”.

I was so fed up of all the normal results when it was very clear my son was not developing like a nuero typical child (normal child)  see i had even learnt the terms of normal and non-normal ( non-nuero typical). so I requested that we got a new peadeiatric consultant , fresh pair of eyes, we went over everything again and how he is now, and decided to repeat bloods due to excessive eating & drinking, also a sleep deprived EEG, test came back ok with bloods but the EEG was ABNORMAL  another blog post , http://swanarchie07.wordpress.com/2012/07/17/normal-all-this-time-then-a-abnormal-11/ so he is now been treated for Epilepsy, We are now at the stage of just waiting to see the out comes of the DDD study and who knows what the future holds, one thing for sure is I found SWAN UK http://www.geneticalliance.org.uk/projects/swan.htm    and now I don’t feel alone anymore.  You can follow me on my blog @  http://swanarchie07.wordpress.com/

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