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.
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.
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 .
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.
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.
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/
BLOG HOP
Click here to enter your link and view this Linky Tools list…
Well not blogged in so long I am not sure if I know how.
These last few months have just gone by so fast and had so much going on I really don’t nowhere to start or what to really write about. Every thing I have been going through really doesn’t matter tonight anymore and things hit a raw nerve with me that we just never really do understand why things happen, having no answers for our children’s disabilities does it really help or not because would I want to know that my child has a life limiting condition or living without a dignosies is better as this helps me cope and live life without the fear of being parted from my child.
Since it’s the very first national undiagnosed day this weekend April 13th and its all about raising the profile and awareness of swan uk (syndromes without a name)please click and take a look http://www.undiagnosed.org.uk/.
I feel I need to write and talk about my devastating news I have heard tonight but before I share this news I need to tell you a little about the circumstances.
In september 2009 when my little boy Archie started special school I became friends with a big bunch of parents mainly mums of children with special needs, been part of this group I didn’t feel alone as much but it also became clear to me many of these children were diagnosed with some kind of condition or another a small few were undiagnosed but not many and my son was one of these, i started to feel alone again because i was living with the answers of the unknown and tests just kept coming back as clear or normal. I became very close to a mum whose child up until 18 months old had no disability at all and was developing perfectly normal. He caught a sickness and diarrhoea virus just 2 weeks after his 1st birthday and never fully recovered. The doctors said at the time it would take a while to fully recover as it was a nasty virus and he was so young. While visiting friends his mum noticed that he would lose his coordination and balance on the right side, so they decided to take him to the local A&E. They didn’t really know what was wrong, they did lots of tests including blood tests, lumbar puncture, and a CT scan, but the only result they came back with was “it’s a virus”. After several days they discharged them and they went back home.
They had a follow-up appointment with the local hospital a couple of days later. They took one look at Josh who by now had lost the use of his right arm and was unable to crawl or walk. They said there was something neurologically wrong, so they arranged for more bloods to be taken and for Josh to have an MRI done the very next day. The results of the MRI left the family dump struck he had suffered some kind of brain damage Acute Striatal Necrosis.
You can follow his story here http://www.joshuastrust.co.uk
We had been friends about 18 months when things started to become clear to me that mum wasn’t coping very well and waiting for some over all diagnosis was very difficult. I was struggling myself with not having any answers for my own son and things between us became too intense, I was looking for support from others and needed to understand why the doctors had no answers for my Archie. She kept saying things nasty and asking why I was fighting all the time since my son wasn’t as disabled as hers, this hurt very much and caused a lot of tension between us and for my own family other stuff went on between us that I would really not like to go into in this blog because that is the past and I have dealt with this. We are no longer friends but tonight I have heard the most devastating news that her son Joshua passed away this afternoon. I really can’t imagine the pain the family are going through right now.
I am finding it difficult too we spent many happy times altogether at their home with celebrations etc and Josh was one amazing little man who has been through so much in his short life and always had a smile on his face. I know until last year he didn’t have a full diagnosis only small little pieces of the jigsaw puzzle and maybe things might have been different for the family and if Josh had the support he needed earlier things might not have been has difficult, or even bitter between us if the family hadn’t had to fight for a quality of life Joshua deserved.
Tonight I want to ring her, I want to cry with her, I want to share and take away her pain but most of all I want her to know just because we are no longer close friends and things got so bad between us I am thinking off her and the family at this very sad time , I am sending my thoughts and pray’s and no matter what happened between us I loved Joshua and he amazed me every day when we were part of his life.
UNDIAGNOISED DAY feels so important even more so tonight
night night sleep tight
JOSHUA MARTINA HOPKINS xxxxx R.I.P
I receive regular updates of the development of my local Parents/Carers Reference Group, which is made up of several social care professionals and parents and carers. I think it is an offshoot of the Learning Disabilities Partnership Board. The minutes of the meetings are fascinating and there are three things that strike me; in the current climate of hubs that go straight to the hub of where everything in social care is severely askew.
Just another Wordpress.com weblog
Just another WordPress.com site
FACT: mdawaffes are mammals
Keeping the public up to date with all the events going on to help raise money for Northampton's Special Care Baby Unit
Honest, imaginative PR and copywriting, created with vivacity, by the sea...
30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by ASD.
Living an ordinary family life with a "one off" child
Life with a Small boy with disabilities
Just another WordPress.com site
Carers Working Towards Change
The greatest WordPress.com site in all the land!
the mad ramblings of a mum of a swan :)
Our vision is a society in which disabled children's needs are met and their rights respected.
How can you make Personal Health Budgets work in practice? This blog shares what we are learning both as people using personal health budgets (peoplehub), and supporting change in health (Helen Sanderson Associates and Groundswell Partnership)
We are supporting schools and colleges to use one-page profiles and person-centred practices to personalise education. Helen’s blog brings together what we are learning in primary and secondary schools.
Parents of Children with Additional Needs Making a Difference in Kirklees (Registered Charity No. 1147436)
Raising awareness of disability in the Furness area
Women are like teabags. We don't know our true strength until we are in hot water!
Supporting Blind and Visually Impaired Children, Young People and their Families
This WordPress.com site is the bee's knees
the first blog showcasing site and non-profit making, altruistic network that welcomes all bloggers
News, information and informed opinion about Special Educational Needs by parents for parents
carersblog.wordpress.com
A documentary on undiagnosed children, their families and the renewed hope for the future
A little boy's life with leaky kidneys
A father's account of parenting, insomnia, chronic back pain and having a special needs child
A great WordPress.com site
The story of Isabella and our journey through the unknown...
Living in the new normal.
Thoughts, reflections and ramblings from our journey without a diagnosis
Just another WordPress.com site
Another episode in the adventures of our boy
SWAN UK (Syndromes Without A Name) is a project run by Genetic Alliance UK offering support and information to families of children with undiagnosed genetic conditions
Just another WordPress.com site
sharing my journey of living with a child with a undiagnosed genetic condition
All about my undiagnosed son & his family
