Parents' Experiences .......... What parents are telling me about their experiences

I asked my Support Group Parents to tell me what they wanted you to know. They told me the following which are actual quotes. They have not been selected from a group of quotes and are instead all of the quotes fed back so far, with permission to add here for you to see.

About Schools and Staff:

"Please, please stop blaming the parents and the child's home life as if it is something we are doing and recognise that it is what the school is doing that needs to change. Believe parents when they tell you that their child is self-harming at home instead of replying "well she doesn't do it here!"

"My 14 year old son has a diagnosis of ASD, ADHD and Sensory Processing Disorder (among other conditions) and suffers with severe anxiety to the point he's not only missed almost 2 full years of high school but barely left the house at all for over a year. School and our LA were less than useless, his (then) mainstream high school told him I would go to prison if he kept missing school and he would be marked as truant, then social services would put him in care! Needless to say I went mad, (I'd be extremely surprised if that teacher ever said anything like that to another child). Our LA officer refused to listen to our concerns about how fast his mental health was deteriorating as he was threatening to hurt himself, and said they had to get him to school or he would sue them when he was 20, my reply was they were putting him under so much stress he might not make it to 20 : ( In the end, I basically fought hard for them to name our chosen school, a specialist independent ASD specific school with a low sensory unit, and he's attended 100% since he started in May. He's a completely different child now, he still doesn't leave the house for anything other than school, but he's much happier. My advice to any parent with a school refusing child would be to trust your own instincts, no one knows a child like it's parents. "

"How can we get the absence recorded as something different as unauthorised so we can leave the worry of court proceedings without having to home educate as I want my son in school"

"Every day I spoke to my sons teacher or ta and they would say he was fine. They underestimated his ability to do what many adults do and hold it all in until he got home?"

"To be told, this is the problem and this is what you can do to change it might have been helpful. To be told, you're doing OK, would be supportive. To day in day out cope with an unhappy child and other parents judging me as we walked in late and his school making me feel it was my fault and constantly receiving absence letters with threats of more serious consequences was exhausting and making me ill too"

"My ASD son started high school and just couldn't cope. School said he was being manipulative and they couldn't sort his problems and he'd just have another one next week anyway."

"His anxiety obviously grew and he eventually became depressed (I'd say he had a breakdown) but no one would help or listen. He said things like he couldn't cope in life and wanted to sleep forever. He stopped talking and eating, he isolated himself, he cried A LOT and was very abusive, I couldn't get him to do anything (read pathological demand avoidance? This was my child) CAMHS wouldn't help, they said school needed to sort it and he didn't have a mental health issue. So back to school hmmm well u can only try, so School refusal again very quickly, School then contacted CAMHS as anxiety turned into phobias and CAMHS said it was the parents fault for not having boundaries, and also my son was trying to get his own way. Have you ever tried putting boundaries in with a child this bad? Answer is you can't unless you are willing to put yourself in grave danger. He is stronger and bigger than me. We had the whole attendance officer sent, threatened with children's reporter, we felt bullied from every direction. What changed?? After missing most of his first year we went private and got him anti depressants, on day 12 the change in him was amazing, life is much much better now. He still couldn't cope with mainstream and has been moved to a small base in another high school which is going well. He just couldn't handle large classes, group work, different classes, different children. Different teachers, crowds and noise. Wish someone had listened sooner. If he was a child who had the ability to think in another way he'd have been a suicide. Please listen to children and parents more, don't judge and blame. Listen, help, take it seriously! It's a mental health issue. Mental health is more important than attendance figures. A physically sick child would not have been bullied in this way."

"The issue of being fine in school is a big one! If they appear fine but won't go then it is obvious they aren't. More compassion and sensitivity is required and not to accuse parents of making it up or that the child is being deliberately defiant! We were put through 6+ years of hell and my son has now been diagnosed with ASD/Aspergers, he also has a lot of sensory issues! More knowledge of ASD is required by the professionals, they see one child and then assume they all should present the same. While there are similarities, it is a spectrum and all of them are individuals too! It is also a myth that children with ASD don't have School Phobia/Refusal because they like the routines of school, which is one reason we were given for refusal to assess"

About Medical Professionals

"Child - 15 Years old - had 10 years of undiagnosed ADD which has ultimately resulted in her anxiety. I'd like to know how we can find a sympathetic professional? We had teachers saying she was a daydreamer who needed to learn how to concentrate, we had CAMHS telling her to just get on with her homework and as recently as a year ago, a consultant paediatrician telling her, '...but you HAVE to go to school!' All these increased her anxiety to the point where she could get into school at all."

"most kids and families aren't getting the support they need. Even if there's no money to give help, professionals can at least acknowledge your child has an issue and it's not bad parenting or naughty children. My daughter should have been diagnosed at 7 when she first went to CAMHS but they had no training for ADD girls when they were used to dealing with ADHD boys. Early diagnosis would have changed everything for her and us".

• Tell us about your experience so that others can read what did / didn't work for you.

I was approached by a 3rd Year student whom I shall name as O.F. She asked me for a quote as a parent of a School Phobic child, detailing how I was directly effected by my son's condition. I wanted to share with you what my reply was .......

"Seeing your child suffering and knowing its out of the ordinary for any child to behave this way is very emotional. Knowing in your heart that there 'is' something very wrong and reaching out for help only to be shot down, is frustrating & upsetting. To want to talk to friends and family but for them to judge you and blame you, questioning your ability to parent is hurtful and isolating. It is then YOU, the parent whom your child depends on that then crumbles mentally with anxiety, stress and depression. Somehow, you keep fighting and keep going. You eventually argue your way towards mental health support which is a relief knowing that support is on the way, only to sit in the appointment and be told it is you or something in your life that has done this to your child.

I have had to be my sons strength when I've felt I had none to carry on. I've had to help him find his way in times I've been lost. I've helped him be brave when I've been full of fear and worry. I've had to make him feel safe when I've felt threatened. But I've been his rock and stayed loyal when his world fell apart and everyone left his side.

The impact of this condition is so misunderstood and judged that these behaviours impact greatly on families severely. I felt so strongly about my experiences that I dedicate my time helping so many others so they're supported, believed & without judgement"