Saturday

Warrior Mum - Claire Ryan's Journey

Autism, Talk about Autism, SEN, Tribunals.


It’s great to be back with another line-up of our popular warrior mums stories that I so love to write! Each story begins with a few basic questions but as every one unfolds I find myself choking back the tears. Just when I think I’ve heard it all another mother comes along and knocks the wind out of my sails, leaving me in total disbelief at the challenges usually the whole family have had to face in order to get the appropriate care and support for the child with special needs. People ask if I have a favourite and I have to say that every one of them is a favourite; I love them all.


Today we have another story that will tug at your heart-strings and stir up mixed emotions, but I will say no more and let one of our warrior mum supporters introduce it.



Maria Walker
Maria Walker

I’m Maria Walker and I’m just about to start my final year of a 3 year Learning Disabilities Nursing Degree at the University of Hertfordshire. I met Michelle Daly via social media early on in my course after reading her book ‘With a Little Help From My Friends’. Michelle for me is the original ‘warrior mum’ and throughout my studies she has introduced me to many other ‘warrior mums’, all incredible women fighting for their children.  Michelle is not only a friend, but she and all her warrior mums are also teachers, sharing their stories of life as part of special needs families and shining light on the discrepancies between what some parents take for granted and others have daily struggles to achieve.

This week’s warrior mum is no different. Claire is the mother of three children: two beautiful girls and a gorgeous little boy. Her story begins around a decade and a half ago with school refusals, meltdowns, disbelieving school staff and accusations of parental fault. Thousands of pounds and years later she has just been through the latest of many tribunals for which she has had to spend hours trawling through the  reams of legal literature that surround the education system. The pressure of this, together with the fact that the ‘opposing’ local Education Authorities benefit from expensive legal representation it is a task which would break many of us.  

Claire’s story sheds light on a truly invisible disability. Her children all look ‘normal’ (actually, they are all beautiful). They are articulate, fit and healthy. They are all loving, caring and clever. Claire’s home is a happy, welcoming, fun place to be.  However, they are also a family from whom I can learn a lot of the pain, stress, anxiety, despondency, and tears which special needs families may face. They are also a family I am in awe of, protective about and, above all else, phenomenally proud of.  Claire is my little sister and these are my nieces and nephew.  

 "My children have taught me to be strong, to stand up for them and for myself. I am not the expert on their autism, they are but I am their advocate, their voice and their guide and will continue to be as long as they need me to."



Claire Ryan at Ambitious about Autism conference
Claire (middle) at Ambitious Autism conference


Claire's Journey
Claire Ryan - Michelle Daly's Warrior Mums
Claire's Holy Communion
I was born in Kent in 1974. Being the youngest of 5 children, growing up was very difficult at times. What I didn't realise, was that it would give me the strength for what lay ahead!

I didn't have problems with learning, in fact I found most subjects at school quite easy so didn't have to focus as much as other children. I found sitting for long periods very difficult though and reading over my school reports, I was described as being quite disruptive in class. I got into trouble a lot at school but I genuinely was trying my hardest so felt picked on by teachers. I felt I had to constantly try and be someone I wasn't or couldn't be just to please teachers and to not get into trouble. 

Claire Ryan - Michelle Daly's Warrior Mums
Claire with older brother
By teenage years I gave up and went off the rails a bit but after learning about self awareness, I don't feel bad about this anymore.

I met Pat when I was 19 he was 21 and we fell in love straight away. We were inseparable and moved in together not long after. Hollie was born 2 weeks before my 21st birthday and we adored her. She was a very unsettled baby and I developed post natal depression. After a lot of counselling and a lot of support from my partner, a year later I was much stronger and we married with Hollie as our Bridesmaid.
Claire Ryan - Michelle Daly's Warrior Mums
Josie and Hollie
Hollie's birth was quite traumatic and it resulted in me needing a blood transfusion, an operation afterwards and Hollie needing IV antibiotics. At 18 months, Hollie began speaking in sentences and was known as 'A little old Lady'! She met all of her milestones and kept us all in line despite her age! She was and still is very anxious which has been one of the most disabling issues she has had to deal with.  
Josie was born when Hollie was 2 1/2. Josie had complications at birth and needed various doctors appointments for the first few years of her life. Her birth was straightforward (elected c-section) but immediately the doctors began using words like 'heart murmur', 'two vessle cord' 'kidney problems' all of which meant little to me but concerned me greatly. Over the next few years, Josie was investigated for reflux and hearing difficulties. All of these issues seem to have resolved over the years and it seems the doctors initial concerns were misplaced. In contrast to Hollie, Josie missed out some of her milestones, and was late to sit, walk and talk. She was a very happy little girl though so we accepted she was following her own path.
One thing I noticed very quickly about my daughters was that they didn't play with toys. They ignored the dolls, prams and Barbies we bought them choosing to draw or play with train tracks instead and they liked to watch the same videos over and over. Josie had many imaginary friends and talked to them all the time. I remember a Health Visitor suggesting 'Childhood Schizophrenia' at one point but we (correctly) dismissed it as Josie was happy and settled doing her own thing.
When Hollie started school, her anxiety quickly rose. In year 2 she began having extreme meltdowns and school refusing. Despite us asking for help from everywhere we could think of, no one knew what to do or what was wrong.
M. Could you please share a typical morning when faced with a child that refuses to go to school?
The anxiety started immediately when she woke up. She would start getting upset eating her breakfast and it built up into screaming and crying quickly after. At the time I thought it was tantrums but very extreme tantrums. 
She would scream and kick all the way to school, (which was a 5 min walk from home) also whilst in the playground waiting to go into the classroom and if I didn't carry her or hold onto her, she would have run away and out of school. She begged us not to make her go. I asked the school for help and advice but they said as it didn't happen in school it was a 'home' problem. They agreed to get a teaching assistant to come into the playground and take her off me. She would  carry her into the classroom and (literally) as soon as she crossed the threshold into the classroom, she stopped screaming. 
Every morning was devastating for all of us and every school day (and some weekend days) started the same way for a very long time. We had to deal with the judgemental stares and comments from other parents and lost friends but how could we expect them to understand when neither us nor the school did? People would ask what's wrong with her and we had to say that we didn't know or understand our own child's behaviour. 
It was so upsetting for all of us. We tried everything to distract, bribe, bargain, promise rewards, 1,2,3 behaviour strategies etc but nothing worked until we acknowledged her stress and anxiety. We switched from typical parenting strategies to being very understanding, constantly reassuring her and giving her some control back. If she had a day when we knew it was going to be bad, we kept her at home. She never took advantage of this but as soon as she felt understood, she started to calm a bit. 
So Hollie went through mainstream infants and Junior school and we struggled on with her anxiety the best we could.
M. How did Josie get on at school? 
Josie followed her sister through the same schools and gathered diagnoses as she went! First Dyspraxia, then a Speech and Language Disorder and Aspergers and ADHD when she was 8. The following year she was also diagnosed with Dyslexia and Irlen Syndrome (scoptic sensitivity).
Our Paediatrician, Dr Higgs became our guide. She sat and talked to us for hours teaching us strategies to help Josie. We mentioned Hollie's anxiety to her and decided to have her assessed for Aspergers too. Within 6 months Hollie received diagnoses of Aspergers and Anxiety disorder just before she was due to go to Secondary school.
Hollie passed her 11 plus which didn't surprise us as she was always very bright. She went off to Grammar school but this proved to be the wrong decision. Despite being in the top 20% of her year group academically, Hollie couldn't cope emotionally. Hollie is 18 now and she isn't ready to share the rest of her story so I must respect that. What I can say, is that during the years to follow we would have to instruct Solicitors, Barristers, go through 2 hearings of an Educational Tribunal and 2 hearings of a Judicial Review at the High court to get the help and support she needed. We had to fight our Local Authority and CAMHS services all the way and it took its toll on us all emotionally.
Sadly, Josie also suffered at school. She was a sweet, well natured little girl, but was constantly in trouble and being punished for things she had no control over due to her diagnoses. She went from being happy and confident to angry and depressed. We had to do something, and fast.
We tried in every way to work with the school and LA, but to no avail. We took the school to a Disability discrimination Tribunal which was heard over 3 days, and with the help of the Barrister we had met, we won. Josie confidently gave evidence and the school had to issue her a written apology. We also started an Educational Tribunal for her so we could get her the right support she needed to get a good education. Josie has always been bright but has so many barriers to learning that she needed more than Mainstream schooling could offer. We also won this and Josie went off to Frewen College for her Secondary Education.
M. How did all that conflict impact on you?
I felt I needed to learn as much as possible so read countless books. I began to study again and have completed Uni courses in autism, counselling children and the young and various courses in speech and language development.
Throughout all of this, my husband was my rock. He made sure all the practical things at home were dealt with and pulled us all up and kept us going through the worst times. Many relationships don't survive through such pressure but we got stronger together and I feel very blessed for that. I became a (very proud) Parent Patron of Ambitious about Autism and have been involved in campaigning to develop services for people with autism.

M. Tell us about the charity Ambitious about Autism.
Ambitious about Autism and TreeHouse School are based in the Pears National Centre for Autism Education, which is located in Muswell Hill, north London.
They are a national charity for children and young people with autism. They provide services, raise awareness and understanding, and campaign for change. Their vision is to make the ordinary possible for children and young people with autism and their mission is to help them to learn, thrive and achieve.
They have an online forum/community called Talk about Autism and I used to be a 'Community Champion' on there helping other parents/family members/professionals etc (anyone in contact with autism really!) There are a number of champions on the forum including adults with autism who can offer advice and ideas or companionship and someone to chat with. 
Living with autism can be isolating at times and forums/communities like Talk about Autism can provide a valuable life-line to people. I have found that it’s very difficult for people to understand the pressures of parenting autistic children or navigating services if they haven't experienced it themselves and have gained a lot of support from being a part of the Talk about Autism community. It was also at an Ambitious about Autism conference that I met Steve Broach, a pupil Barrister at the time who had represented us in Josie's Disability Discrimination Tribunal. Steve assured me he would help me to help our family navigate the legal system and I can honestly say that without his support, I wouldn't have got though this, or what else lay ahead for us over the following 10 years.

 M. The girls must have been delighted when their baby brother came along.
Claire Ryan - Michelle Daly's Warrior Mums
Jack
Our family grew in 2005 when Jack was born. He was a perfect, happy relaxed baby and adored by his parents and big sisters. He developed 'typically' and at 15 months he had lots of words like 'Mum, Dad, Teddy'. Then, and out of the blue, he just switched off. He stopped talking, became very clumsy and stopped showing interest in interacting with his family. I knew this meant he was autistic and when he was 2, I took him for an assessment with the SLT. She agreed he was showing signs of autism and wrote a report to take to the Paediatrician, Dr Higgs. When Jack was 3, he had been assessed by many professionals and received a diagnosis of Autistic Spectrum Disorder.

I had to give up my post as Community Champion (Talk about Autism) as most of my time was used up fighting the LA but I hope to go back to it when Jack is as settled as his sisters are. 
Claire Ryan - Michelle Daly's Warrior Mums
Jack's 3rd birthday with, Josie and Hollie
After a lot of support and interaction from his family, Jack began speaking again, but (as we call it) in Jack-ish! Both his Dad and I were called 'Pat' and he named all of the Transformers and many dinosaurs before he said 'Mum'! Now Jack is 8, he has a vast vocabulary which includes words his Dad and I have to Google to find out what they mean!



M. Even though you were quite knowledgeable about autism and wise to the system, it must have been daunting having to take on 'The system' again?
Claire Ryan - Michelle Daly's Warrior Mums
Claire, Jack and Rocky the dog
Jack is lucky though. He is growing up in a family where autism and difference is 'normal'. He has been understood from the outset and we made sure that he had a good educational Statement before he left nursery school. We went to Tribunal to ensure this would secure good support as soon as he started school.
Jack went off to a LA maintained specialist ASD unit and to begin with, he was doing well. Over the years, the needs of the children going into the unit changed and they began taking more and more children who display challenging behaviour which has really unsettled Jack.
In March 2013, the school and LA decided he no longer met the criteria of the unit and that he needed to go to Mainstream school. They also wanted to take away his Statement of SEN. After what had happened to both his sisters, we couldn't allow this to happen. We began getting hisSENs re-assessed both via the NHS and privately as the LA and school did not intend to do so. Jack had developed motor and vocal Tics and he was also showing signs of growing anxiety. During the assessments that followed, he was Diagnosed with Tourette's Syndrome, Dyspraxia, Anxiety disorder and is being assessed for ADHD.
Jack was also assessed as having a 'highly superior IQ' which didn't surprise us, but confirmed that his educational provision needed careful consideration. We found a small independent school which had other children just like Jack in.
Once again, and for the 5th time, we began an educational Tribunal. The first hearing was on 11th June and the second was on the 8th July. Due to the pressure of the Tribunal, one of our witnesses gave conflicting evidence stating that the school we had found could not meet Jack's needs. We were devastated when, after just arriving on (a very much needed) holiday, the news came through that we had not won. We are still considering our options and will fight on if we have to but are still at the stage of processing the 18 month battle we have just endured.
M. At this stage you're obviously quite experienced with tribunals. For the benefit of any parent considering taking these steps could you please tell us about the first tribunal you attended, who was there to represent you and who were the 'opposing' team? How long did the meeting last and how long before the outcome?  
The first Tribunal I attended was for Disability Discrimination for Josie. I had also lodged an educational appeal but after winning the Disability Discrimination Tribunal, the LA conceded the educational one.
We were represented by Steve Broach, and the LA had instructed a QC to represent them. We thought this was very unfair as the LA have unlimited access to public money to pay for legal representation where as we as parents have to struggle through on our own or navigate ways to find either charitable or expensive legal support.
All of the hearings I've attended were daunting and the pressure of wanting to get the right outcome for my children added to the stress. There has always been a panel of 3 Tribunal members at the hearings. One is a Judge and the other 2 are people with experience in SEN. I did feel like they supported us and treated us well ensuring that the LA did not bully or intimidate us through the hearings. 
The hearings vary depending on the type of appeal. Some can last half a day but all of my children's have lasted at least one full day. The first Tribunal was heard over 3 days but each date was weeks apart so it felt like it went on forever! After the hearing there is usually approx 2 week wait whilst the panel decide on the outcome and the Judge writes up the decision/order. There is a process to appeal this decision if parents and LA's dont agree with it and we are currently deciding if we are going to take this step and appeal to the upper tier Tribunal with Jack's case. 
I found the build up to the hearings the most stressful. There are fixed deadlines to provide evidence for the hearings and as the LA's Legal representatives use quotes of Law and legal based arguments in their paperwork, it felt at times that I wasn't equipt to represent the children on my own. I could write a separate piece about going to Tribunal as it is so difficult to cover and capture what it is like in a few sentences but regardless of the huge amount of stress and emotional difficulty the legal battles have put us through, I wouldn't want to put off parents from appealing. The process is there for us to use and in some circumstances, can be the only way to get what our children need.  

M. How much do you reckon you've paid in legal fees?
I have paid to instruct Solicitors in order to instruct Barristers in the Judicial Review cases, Steve Broach represented us again in the first JR case. My dad helped me fund the solicitor we needed to help us challenge CAMHS Social Services and the LA in Hollie's case, however at the point of taking the process to court for Judicial Review, parents can apply for Legal aid in their children's names in certain situations. It is a different process with Tribunals and some parents pay for Solicitors and Barristers to prepare the paperwork and to represent them at these hearings, although it is possible for parents to do it alone. The Judicial Review is heard at the High Court in London and is a much more formal process than the Tribunal hearings and parents need formal legal advice and representation for them.
There are charities such as Ipsea who offer free legal advice and in some cases representation for parents. There are also many organisations offering advocacy for Tribunals and are run by parents who have navigated the system in the past and have built up their own knowledge of the law and processes as they went.
The biggest cost to us over the years has been in getting private assessments (with Educational Psychologists, Speech and Language Therapists and Occupational Therapists). With these and other costs,we have spent between £10,000 and £20,000. Although we both work, we are not well off and this has meant we have had to work so much harder to save money in order to help get our childrens needs met. Some parents have spent this amount and more on just one Tribunal and others much less so it is very dependent on yours and your child's situation, needs and the type of appeal they are fighting. 
M. You must be proud that Hollie and Josie have done so well at school.
Josie has just finished her GCSE's and got very good grades. She is ready to leave specialist schooling now and go to a Mainstream 6th form. By law, her amended Statement of SEN (SSEN) was due to arrive in Feb 14. We received an SSEN but it wasn't Josie's, it referred to a 'Jake' and named a different school to hers in Part 4. In May 14 we received a second SSEN which appeared to be the first one, but with 'Jake' removed and the school in Part 4 changed. It was clearly not Josie's SSEN so we instructed a Solicitor to begin a Judicial Review as it seemed this was the only way we could get the LA to issue this. It finally arrived at the end of July and after beginning a formal complaint with the Local Authority, they have agreed to reimburse us the cost of our legal fees in this matter. It doesn't make it right, but it shows some willingness to take responsibility over this situation.

Both my daughters have turned out to be quite the activists for autism. 


Claire Ryan - Michelle Daly's Warrior Mums
Claire with Hollie
Hollie has also spent time campaigning with the National Autistic Society to help improve mental health services for children and young people with autism and she became a youth Patron of Ambitious about Autism. This helped her recovery in so many ways and I am happy to say that she is settled, doing well at college and looking forward to her future. She has found a real talent in art and is studying for a Graphic design qualification and achieving top marks.
Claire Ryan - Michelle Daly's Warrior Mums
Josie
Josie is a Youth Ambassador for Ambitious about Autism. She has spoken to MP's Lords and also interviewed Ministers about the SEN reforms. Her last engagement at Parliament was to give a speech at the Speakers House and she has just returned from 2 weeks in America with the US Embassy on a Disability Right exchange programme. She is growing into the successful, happy, confident young lady we always knew she could be with ideas of becoming a Human Rights Lawyer when she is older. Both Hollie and Josie have won local awards for their campaigning work too, which is fantastic.

Claire Ryan - Michelle Daly's Warrior Mums
Sisters, Emma, Claire and Maria
 My brothers and sisters are all really supportive in different ways. Maria  has been my 'Cheerleader' through our last battle. She has helped me stay strong, listened to me rant and because she has an understanding of autism, she has been able to understand, with little explanation, why I've been so frustrated at times. She told me once that special children are not given to special parents, special children make special parents. 

M. And YOU have achieved so much too. What a wonderful role model you've been for your children.
 My husband often says 'There’s never a dull moment living with our family, but I'm pretty sure that is a good thing!!!
I've worked in Speech and Language Therapy with children from pre-school age up to teens for 11 years and really love my job. Helping children learn skills to navigate the social/language world particularly autistic children, is now a passion of mine as I realise from first-hand experience how important it is. 
The pressure of battling for every bit of support for my children has really taken its toll over the years, but seeing the results of what the right support can bring makes it truly worth it.

My children have taught me to be strong, to stand up for them and for myself. I am not the expert on their autism, they are but I am their advocate, their voice and their guide and will continue to be as long as they need me to. 

M. Claire, thank you so much for sharing your story. It's been quite an education.


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