NAME OF YOUR CHILD
Bailey Eaton
CURRENT AGE OF CHILD
11 years old
AGE OF CHILD WHEN YOU NOTICED THEY HAD DIFFICULTIES / ISSUES
Aged 2 years
AGE OF CHILD WHEN DIAGNOSED
6 ½ years with the ADHD, 10 MLD, 11 ASD, 10 dyslexia
HOW MANY ASSESSMENTS HAS YOUR CHILD HAD?
From PIN it was 2
DOES YOUR CHILD HAVE AN EHCP?
Yes
IS YOUR CHILD AT A MAINSTREAM SCHOOL, A SPECIALISED UNIT OR A SPECIAL SCHOOL?
He was at mainstream but he is now at special after a fight.
IS YOUR CHILD AT THE SCHOOL THAT IS BEST SUITED FOR THEM?
Yes now but it was a struggle to get him there.
HAVE YOU BEEN TO TRIBUNAL?
Yes
IF YES, HOW MANY TIMES?
Once
DID YOU WIN OR LOSE?
I won !
DID YOU FEEL THE LA LISTENED TO YOUR VIEWS?
No there answer to you if you don’t agree with them is to appeal.
DID YOU FEEL WELL TREATED / UNDERSTOOD BY THE LA?
No they talk to you like you are stupid and they say they are doing things to help but they are not.
DID YOU FEEL THE LA HAD YOUR CHILD’S BEST INTERESTS AT HEART?
No and I cant even say that they were trying to save money as they were paying over £8000 more to send him to a mainstream that was not helping him than it would to send him to the special school that can help him
AT WHAT STAGE DID PIN BECOME INVOLVED?
Before the tribunal.
HOW MUCH HELP DID PIN GIVE YOU?
Lots I had two assessments provided by PIN and if he never had them then he would still be in mainstream struggling not just educationally but mentally as well.
HOW DO YOU FEEL THIS AFFECTED THE OUTCOME?
It was the proof that we needed that the school was unable to meet baileys needs educationally or mentally. As the school was against me and was trying to make Me out to be an over dramatic mother with no clue. Where as the fact was the school has been getting a lot of extra funding for my son and allowing him to fall further behind and get bullied on a daily basis with out any help or support for him. And these reports and one of the professionals being in court with me highlighted the fact that the school was lying and was failing my son. It also highlighted what needs and support my son needs to be able to learn and become the best of his ability.
HAS ANYTHING CHANGED BECAUSE OF PIN’S HELP OR INVOLVEMENT WITH YOU / YOUR CHILD?
Yes my son now goes to a special school that can meet his needs so he is a more happy little boy and not the boy who used to come home and tell me he wants to die.
NAME OF CHILD
Daisy Wood
AGE OF CHILD WHEN YOU NOTICED THEY HAD DIFFICULTIES/ISSUES
From pregnancy I had concerns Daisy didn’t move I think I felt her kick twice in 9 months. I was continually at hospital because of this and I was told she had a good heart beat and not to worry. She always measured small and my fluid levels where low. My entire pregnancy was very worrying but I was continually told she was small because she was a girl and I couldn’t feel her kick because she was kicking inwards. When Daisy was born she was a tiny 5lbs and like a beautiful doll no clothes fitted or nappies. Up on the ward she didn’t feed well and cried a lot, I now know she had horrific reflux and dairy allergy. A paediatrician came to see my daughter and told me she had dysmorphic features , I had never heard this word before and asked what she meant. She said well its obvious from your pregnancy that your daughter has a syndrome! I was hysterical what was all these words she was using about my beautiful daughter she quickly left me with nurses who tried to calm me down. Another paediatrician was called who said the exact opposite he apologised for the other doctor and said Daisy was fine, we was sent home and deep down I knew otherwise.
After coming home she screamed and screamed and didn’t feed well, her breathing was so terrifying at night time. I took her to a&e many times to be sent home saying it was a virus. The 3rd time I told them I was not leaving after she only drunk 2 oz of milk all day for days.
She was seen by a dietician who put daisy on a dairy free diet and said she had terrible reflux which had burnt her throat and nose so badly. This had caused the terrible noisy breathing which I was told was a virus for months along with severe oral aversion.
We was admitted many times due to illness and not eating well, I begged please help me she is not holding her head, sitting or smiling. I was told nothing was wrong I was taking up a bed and even that I must have post natal depression. Finally my daughter’s dietician said Carrie this is not right and she called in a favour and she asked a doctor to see Daisy and he within minutes he ordered genetic testing to be done. I was so happy to finally have some listen but terrified at what could be coming our way.
At ten months Daisy had a huge seizure I went to the kitchen came back and I thought she was dead in her bouncer chair. I performed CPR on my tiny daughter while an ambulance was called she started to fit and this continued for over an hour all the way to hospital. I still remember standing I my pyjamas watching over 15 people working on my tiny daughter it is something that will never leave me.
While in intensive care the results arrived Daisy had a rare syndrome Wolf Hirschhorn syndrome it wasn’t anything we had done it had just happened. I remember asking if she would get married and have children of her own while feeling like I had been hit by a bus. The doctor handed me wikipedia print out from the internet and said well he knew a child with down syndrome that worked in Mark’s and Spencer! This was only the start of stupid things people would say to me about my daughter.
I was put in a room with my precious little girl with no support, no person to talk to so when I complained how terrible this was I was offered a visit from a priest from the hospital chapel , you can imagine what I said. I spent weeks in hospital reading up on her syndrome, contacting other parents not allowing myself to dwell I knew from the way I had been treated in hospital I needed to be strong for my daughter and all my family. Don’t get me wrong I have been low so so very low at times but I very well known at our hospital now for not taking any C**P. Little did I know how much of a fight this journey would be especially when starting the journey of EHCPS and trying to deal with the Local Authority!!!!
AGE CHILD WAS FINALLY DIAGNOSED
10 months old
IS YOUR CHILD AT A MAINSTREAM SCHOOL, A SPECIALISED UNIT OR A SPECIAL SCHOOL?
The LA told me Daisy could not go to school till she was 5 years old I pointed out she had an EHCP with provision set out and this was to be covered. I was then told mainstream only which I definitely knew they could no way meet my daughters complex needs, I battled for months and was offered a SLD school which my daughter started as there was no other schools in area which took her age. After starting I could see my daughter was not SLD and they could not only meet her needs but also her safety was being put at risk so I pulled her straight out of school. I found an amazing independent special school and visited Daisy fitted in instantly with verbal peers with whom she could play with, amazing staff that understood my daughters needs and her safety needs. After a year of battling and help from PIN and SOSSEN the LA backed down and named the school we wanted yipeeeeeeeeeee. The LA are still refusing my daughter needs 1 :1 support or any direct therapy so this is why the fight still continues. What makes me laugh is the school they have now agreed to all children get a 1:1 and direct therapy but of course I need this in my daughters EHCP.
IS YOUR CHILD AT THE SCHOOL THAT IS BEST SUITED TO THEM?
She is going to be starting a great school in September and I am sure I will have to battle to keep my child there.
The previous school was all the LA had to offer was an SLD school for a MLD child and they tried to make Daisy’s needs fit that school. I expressed concerns that Daisy had no verbal peers and they told me that once a week they would put her with an older child so she would have someone to communicate with, how is that meeting her needs!
HAVE YOU BEEN TO TRIBUNAL?
Not yet we but we still could be going end of July.
DID YOU WIN OR LOSE?
Won school so far just provision to go.
DID YOU FEEL LA LISTENED TO YOUR VIEWS?
No not at all, I remember I was asked to a “way forward meeting" by the head of SEN after I tried to put my views/concerns to her she looked at me and said you don’t want go to tribunal it’s very stressful and it’s my job and I am used to it. I looked at her straight in her eyes and said so you called me to this meeting to suss me out and she replied yes!. I said now after meeting me what do you think , she said you will go all the way and I replied yes I will do what ever it takes for my daughter to get what she needs and to achieve her full potential. I left the meeting knowing 100% I would have to appeal and I needed help.
AT WHAT STAGE DID PIN BECOME INVOLVED?
I believe not long after this meeting, I had been getting advice from Sos!sen who said I needed private reports that cost hundreds. Again despair washed over me how could I do this, how does any parent run a home, be career for a complex child and there typical siblings and take the LA to tribunal. The along came PIN whom I can not thank enough when I got an email saying you would help I actually couldn’t believe there was kind people out there.
HOW MUCH HELP DID PIN GIVE YOU
PIN have paid for Ann Baumber an amazing EP to visit my daughter and do an assessment they have also agreed if needed to pay for a witness in court. On top of that just chatting with Catherine via email being able to say struggling today has been a help. Often you just need that person to remind you although this journey is bloody hard it’s worth it so crack ON!!
HOW DO YOU FEEL THIS AFFECTED THE OUTCOME?
We won our daughter's school, this would never have happened without my independent reports. These reports are vital evidence and when the LA says they do not take these reports into account don’t listen because they are worried and the tribunal will definitely take them into account.
HAS ANYTHING CHANGED BECAUSE OF PIN'S HELP OR INVOLVEMENT WITH YOU/YOUR CHILD
Hell YES !!! For starters my child is going to an outstanding independent school where I know she will flourish.
You have helped our entire family’s happiness as they all adore Daisy and felt frustrated not knowing how to help.
Lastly you will never know what a year I have had, how many times I have cried myself to sleep with worry, how I have struggled to get through a day let alone go to appeal and cope with all the paperwork and financial burden this brings, how I have felt a rubbish mum to my other child because I felt I was neglecting him for paperwork ......I can honestly say without PIN and Sos!sen helping me get this school for Daisy I not not sure mentally where I would be right now. Thank you just does not seem enough but thank you!
"Will this ever end? I am shocked at how hard this is and this entire tribunal thing is not parent friendly at all. I could not carry on doing this without the help from PIN and Sos!sen!"
NAME OF YOUR CHILD
Harry Ayton
CURRENT AGE OF CHILD
11
AGE OF CHILD WHEN YOU NOTICED THEY HAD DIFFICULTIES / ISSUES
5
AGE OF CHILD WHEN DIAGNOSED
10
HOW MANY ASSESSMENTS HAS YOUR CHILD HAD?
I can’t remember proper paid assessments EP/S&L/OT 4, Moor House 2-day assessment makes 5, cannot remember how many in relation to the lead up to EHCP being issued
DOES YOUR CHILD HAVE AN EHCP?
Yes
IS YOUR CHILD AT A MAINSTREAM SCHOOL, A SPECIALISED UNIT OR A SPECIAL SCHOOL?
Mainstream moving to special for secondary
IS YOUR CHILD AT THE SCHOOL THAT IS BEST SUITED FOR THEM?
He will be at the best school once he has moved to Moor House
HAVE YOU BEEN TO TRIBUNAL?
No
IF YES, HOW MANY TIMES?
DID YOU WIN OR LOSE?
DID YOU FEEL THE LA LISTENED TO YOUR VIEWS?
Not without the weight of a barrister and after spending a lot of money on assessments.
DID YOU FEEL WELL TREATED / UNDERSTOOD BY THE LA?
No. Every time I tried to contact my case worker she never responded I had to result in more hardline emails to senior staff to get some sort of reply. I was supposed to have been issued my final EHCP by mid-February with a school, I didn’t receive this till end of April beginning of May no school was offered and they did not accept Moor House till after they received the bundle with all our evidence on 24 June 2019
DID YOU FEEL THE LA HAD YOUR CHILD’S BEST INTERESTS AT HEART?
No
AT WHAT STAGE DID PIN BECOME INVOLVED?
Late stage when I realised I needed as much evidence as I could get to secure him the school he needed.
HOW MUCH HELP DID PIN GIVE YOU?
A great deal of help, I’m a single mum with little savings which have all been spent on Harry’s case I was drowning and the financial support to get the evidence I needed to get Harry in to Moor House was an amazing relief and so nice to finally know there were people out there on your side. This process is a minefield I had been unpicking it myself for the last year so finding someone that was willing to give me a little bit of hand gave me hope.
HOW DO YOU FEEL THIS AFFECTED THE OUTCOME?
The LA conceded c. 3.5 weeks before the tribunal date, this was after we had submitted our bundle with all the evidence of the assessments. I’m not sure what the outcome had been if we hadn’t had thorough assessments in all areas (EP/S&L/OT).
HAS ANYTHING CHANGED BECAUSE OF PIN’S HELP OR INVOLVEMENT WITH YOU / YOUR CHILD?
Yes. We got best result for Harry and his future. I don’t think I really took in to account the effect that this process has had on Harry, seeing his face and the excitement he experienced going in to school that morning and telling everyone he got his school was so much more emotional that I was expecting. Harry is a child that takes everything on board and deals with things quietly, so I wasn’t expecting such an animated response from him, he had clearly been very worried about what was going on.
He has had so much support from everyone at his school that the teachers and pupils in his class all cheered and his support workers where ecstatic. One support teacher I met today said it’s the best outcome she’s had seen in her career as Harry is such a lovely child and really tries hard and really deserved it.
I’d like to thank everyone at PIN for helping with our case.
Joanna Burr
NAME OF YOUR CHILD
Samuel Dexter Smith
CURRENT AGE OF CHILD
Six
AGE OF CHILD WHEN YOU NOTICED THEY HAD DIFFICULTIES / ISSUES
Two
AGE OF CHILD WHEN DIAGNOSED
33/4
HOW MANY ASSESSMENTS HAS YOUR CHILD HAD?
4 for tribunal
Plus EHCP assessments
DOES YOUR CHILD HAVE AN EHCP?
Yes
IS YOUR CHILD AT A MAINSTREAM SCHOOL, A SPECIALISED UNIT OR A SPECIAL SCHOOL?
Special School
IS YOUR CHILD AT THE SCHOOL THAT IS BEST SUITED FOR THEM?
Yes
HAVE YOU BEEN TO TRIBUNAL?
yes
IF YES, HOW MANY TIMES?
once
DID YOU WIN OR LOSE?
won
DID YOU FEEL THE LA LISTENED TO YOUR VIEWS?
No. They offered a mainstream school that was not suitable. A 4 form entry school with a SLT base. Base children are first and foremost members of the mainstream class and are removed only when they begin to struggle.
DID YOU FEEL WELL TREATED / UNDERSTOOD BY THE LA?
No
DID YOU FEEL THE LA HAD YOUR CHILD’S BEST INTERESTS AT HEART?
No
AT WHAT STAGE DID PIN BECOME INVOLVED?
From the beginning
HOW MUCH HELP DID PIN GIVE YOU?
Gave us lots of advice
HOW DO YOU FEEL THIS AFFECTED THE OUTCOME?
Yes greatly. Gave me confidence in my decisions and practical advice on assessments
HAS ANYTHING CHANGED BECAUSE OF PIN’S HELP OR INVOLVEMENT WITH YOU / YOUR CHILD?
Yes we have a place in Blossom House and my son is thriving
NAME OF YOUR CHILD
Jude Lawlor
CURRENT AGE OF CHILD
7
AGE OF CHILD WHEN YOU NOTICED THEY HAD DIFFICULTIES / ISSUES
18mths/2yrs
AGE OF CHILD WHEN DIAGNOSED
Around 4years
HOW MANY ASSESSMENTS HAS YOUR CHILD HAD?
SLT OT Physio from age 31/2
DOES YOUR CHILD HAVE AN EHCP?
Yes
IS YOUR CHILD AT A MAINSTREAM SCHOOL, A SPECIALISED UNIT OR A SPECIAL SCHOOL?
Currently mainstream with a TA
IS YOUR CHILD AT THE SCHOOL THAT IS BEST SUITED FOR THEM?
No
HAVE YOU BEEN TO TRIBUNAL?
yes
IF YES, HOW MANY TIMES?
once
DID YOU WIN OR LOSE?
won
DID YOU FEEL THE LA LISTENED TO YOUR VIEWS?
No not for three years
DID YOU FEEL WELL TREATED / UNDERSTOOD BY THE LA?
No
DID YOU FEEL THE LA HAD YOUR CHILD’S BEST INTERESTS AT HEART?
No
AT WHAT STAGE DID PIN BECOME INVOLVED?
I initially contacted them at the outset of my appeal to ask for advice
HOW MUCH HELP DID PIN GIVE YOU?
PIN funded an EP assessment which would be used as evidence in my appeal
HOW DO YOU FEEL THIS AFFECTED THE OUTCOME?
Without the EP assessment I would not have won the appeal
HAS ANYTHING CHANGED BECAUSE OF PIN’S HELP OR INVOLVEMENT WITH YOU / YOUR CHILD?
My child has gained a place in a specialist school which is the most suitable school to meet his needs.