Words from other parents

Advice                Support            Impact             Changes needed in society

Advice

'It's trite but true: be kind to yourself. It's not your fault if you struggle (and it's not your child's fault either). Some people will really come through for you, and some will let you down. Keep the good ones close. Make sure there are other things in your life which nourish you, to keep you going through the hard times. Your child is wonderful; the rest of the world sometimes cannot see that, and so much the worse for it.' - Dad, Son, 10 years old, ASD

'I wish I'd enjoyed him more as a baby, because he was beautiful. I spent the first year of his life terrified of him.' - Mum, Son 9, cerebral palsy, Quad athetoid, non-verbal

'I look at him now and realise I wouldn't change a thing. He is funny and charming and I am really proud of what he has achieved. He has taught me so much about me and life.' -  Mum, son, 14, Aspergers, dyspraxia and Spd
 
'I wish I had worried less about doing my son's physiotherapy and occupational therapy, and just taken time to enjoy the early years.' - Mum, son, 9, cerebral palsy

'I wish I had trusted my instincts more, been less embarrassed and self-conscious, and asked for help much earlier on.' - Mum, daughter, 8, Autism, sensory processing difficulties, learning difficulties, Dyscalculia etc


'Keep good records of hospital visits etc as useful for when they lose ur child's file. Ask lots of questions including when will I hear from u next and who do I contact if I don't just incase the letter gets lost in the post that way they know they can't fob u off. Ask for deadlines in regards to replies ie when will I hear by and make a note of the date.' - Mum, daughter, 7, hemiplegia

'There is and will be happiness and joy, cherish it.' - Mum, son, 6, right hemiplegia cerebral palsy

'Don't hold them back, treat them like any other child, if there is something they can't do, let them work it out for themselves. They have same hopes and desires as non disabled, so encourage them to do as much as possible and keep them looking smart, just because they are disabled doesn't mean they don't want to be cool!' - Dad, Son, 11, right sided Hemiplegia (Cerebral Palsy) and focal epilepsy

'Become a barrack room lawyer because the Local Authority will do everything it can to deny you your legal rights' - Mum, 1. ADHD (Inattentive type) Age 18, 2. Serious chronic depression, severe dyspraxia, Age 15

'You cannot expect people to know what to do, they need to be told how they can be helpful. Put your own needs first...unless you are resilient and strong you will not have the energy to cope with your child.' - Mum, son, 10, CHARGE Syndrome - deaf, blind, absent vestibular system, Cleft lip and palate etc  

'Take it hour by hour during the really difficult times. Believe it will get better. Do your research, find solutions to your child's particular difficulties, don't depend in professionals for all the answers, other parents are often more helpful.' - Mum, son, 9

'People did tell me he would develop and grow and things would get easier but I didn't believe them, now I realise it did.' - Mum, son, 4, asd, spd

'Talk to others - you're not the only one! Always follow things up don't allow forms to stay on someone's desk for too long! Go out!!!! Don't hide!' - Mum, son, 4, 1p36 deletion syndrome - mobility issues, severe global development delay, non verbal

'My advice is celebrate the inchstones, embrace your new normal, find people who 'get' it and be prepared to fight'  - Mum, daughter, 20, quadraplegic dystonic cerebral palsy

'People need to ask if they can help! When you really need help...all of the time... it is so difficult to ask for help, you feel like you are always asking! If people could just offer to help, then you would feel like they really want to.' - Mum, son, 10, CHARGE Syndrome - deaf, blind, absent vestibular system, Cleft lip and palate etc  

'It has changed me in so many ways. Learning to be more self compassionate because that was the only way I would get through this has definitely made me a kinder, more patient person and mother. I am also more confident because I have to be always asking for support. I certainly do not worry as much because there are more important things to be doing.' - Mum, son, 14,  Aspergers, dyspraxia and Spd

'Helped...taking time for myself' - Mum, son, no formal diagnosis

'I've...come to realise that knowledge is so important when trying to get through tough medical times. Doctors don't have all the answers and they don't treat the whole child, just symptoms. As his parent I have done my own research, asked as many questions of as many different people (including other parents) as I can and use my judgement and intuition to make decisions at difficult times.' - Mum, son, 9 years old

'Get 'benefits advice' and 'diagnosis earlier' - Mum, son, 13, Autism, Dyslexia, Learning Difficulties

'Be prepared to pay for some services yourself.'  - Mum, son, 4, Autism

'Research, read every book, go to support groups, grab everything you're offered with both hands and DO NOT let go!'  - Mum, son, 8, ADHD/ODD, son, 7, possible ODD, maybe ADHD.

'Just to keep pushing for help, join any support groups and take all of the information you can which will help you in the first instance and then through your experience you will find you are able to support too' - Mum, daughter, 9, autism

'I tend not to give advice because I am no expert - but I would say to others please try to accept and inform. Your child's disability makes them who they are and they would not be that person without it - love that.' - Mum, son, 36, hemiplegia 

'see a counsellor to talk through the loss and massive changes you are having to go through.' - Mum, daughter, 13, ASD, ADHD, epilepsy, dystonic hemiplegia

'Remember that a diagnosis is an opinion, not a prediction.' - Mum, son, 13, Opitz G syndrome, Bronchiolitis Obliterans, Bronchiectasis, non verbal autistic, tube fed 

'Be brave, don't be afraid to admit you don't know what you are doing. Educate your family and friends. Be ready to fight but always be respectful. If gets you further.'  - Mum of child, 11, autism

'The early years were a blur of grief. In many ways it's harder as time goes on, but I am more emotionally accepting now than I was then.'  - Mum, son, 7, Downs Syndrome with Sensory Processing Disorder

'...the process is a journey and children grow and achieve things you will never imagine. Don't be frightened. Let people help you.' – Mum to child, 11 with autism

'Seek help, you don't need to be alone' - Dad, son, 8 cerebral palsy and learning difficulties

'Find a mentor! Someone who is one step ahead of you is invaluable. Also push for everything you can think of, especially a statement as early as possible. Ask for the moon on a stick, the worst they can do is say no. If they say no, find a different way of asking'  - Mum, daughter, 11, global developmental delay and ADD

'Try not to let worry ruin your enjoyment of your child. Be prepared for people to give you a poem called Welcome To Holland. Don't bother being polite, tell them it is utter tripe. Look after yourself, make time for you' - Mum, son, 7, agenesis of the corpus callosum

'I wish I'd asked for help more and I wish I'd shared the knowledge I gained about hemiplegia more effectively with family and friends.' - Mum, son, 36, hemiplegia

'It's ok to be upset and grieve that your child is not "normal." Get first aid training.' - Mum, son, 11, chromosome anomaly

'things will get easier to deal with' - Mum, son, chromosome abnormality, asd traits, severe learning disabilities

'Talk to others who have been through it' - Mum, daughter 23

'Try to meet similar families' - Mum, Son, 9,  ASD/ADHD

'When he was first born we were advised not to worry about the future but just to enjoy having a baby. It was great advice which we did listen to and followed.' - Mum, son, 2, ACC

'Grow a thick skin, stand your ground, research, and do what you feel is right for your child/ren' - Mum, 24- ASD,ADHD, MLD, 22- ASD, MLD, 20- aspergers dyslexia, 16- insomnia, depression, stress, anxiety possible ASD, 12- anxiety disorder, MLD possible ASD, 10, borderline ASD, MLD etc, 8-ASD, SPD,MLD, ADHD?, epilepsy?

'Never accept "no" for an answer. Ask lots of questions and make sure you get the answers to your questions. Epilepsy is more common in children with ASN/learning difficulties.' - Mum of child, 8

'things [will] get easier to deal with' - Mum, son, chromosome abnormality, asd traits, severe learning disabilities

'Fight for all you entitled to...never give up' - Mum, son, no formal diagnosis

'Step into their world as soon as possibly as early intervention and help is so important for their potential' - Mum, son, 8, Phelan mcdermid syndrome

'Very hard at first but after coming to terms with the diagnosis we are closer and our son brings us so much joy' - Mum, son, 1, quad cerebral palsy/visual impairment and epilepsy

'Don't be too proud to accept help. Asking for respite care doesn't make me a rubbish mother.' - Mum, son, 11, chromosome anomaly

'You have to be strong and fight, do not accept advice if it feels wrong just because you are being told that that is all there is' - Mum, son, 10, quadriplegic cerebral palsy

'Try your best to get your child diagnosed as early as possible because with this I have experienced that they will get better support during their school years.' - Mum, son, 21, ADHD, Asperger's and depression, son, 16 ADHD, Irlen Syndrome, Sensory and spatial awareness difficulties, dyslexia, short term memory problems. Son, 8, Irlen Syndrome and ASD

Support

'Bobath Wales gave me confidence I wish I'd known about them sooner and not had to find them myself.' - Mum, Daughter, 5 left hemi cp

'Jesus gives me the strength to face each day even though there is often abuse and never thanks, little sleep and no rest or time off I know I do it for Him caring for my sons is my calling. I read endlessly about my boys conditions looking for strategies and understanding. A support group for parents changed my life when for the first time I met someone who had also been hurt by their child I wasn't alone it made all the difference.' - Mum, son, 11 asd spd suspected pda and anxiety, and son, 9, awaiting assessment 

'In my darkest depressed moment when I felt I could no longer enjoy being a parent, I posted on the Netmums forum and my word the support and kindness I recieved was overwhelming. Young Minds were equally reassuring and empowered me to make decisions that went totally against the professionals but improved our lives no end.'  - Mum, son, 14, Aspergers, dyspraxia and Spd

'Find out if there is any support groups that can help you' - Mum, son, chromosome abnormality, asd traits, severe learning disabilities

'Portage were huge telling us what was available' - Mum, daughter, 7, hemiplegia cerebral palsy

'Mentor or other family in similar situation' - Mum, daughter, 3, cerebral palsy,

'I have a strong faith and so God gives me daily strength. Previous nurseries and schools have been very supportive. Family help to give us respite.' - Mum, daughter, 12, p36 chromosome deletion

'Friends who have had similar experiences have really helped me as they get what I'm going through' - Mum, son, 11, chromosome anomaly

'HemiHelp helped both us and my son to not feel alone. Ideas and connections with services to help him were valuable. The sports days were great for all the family.' - Dad, Son, 24, hydrocephalus & left side hemiplegia

'Respite is a lifeline for us. We can do things that are impossible with our son. Things like going for a meal or just a walk which most people take for granted.' - Mum, son, 13, Opitz G syndrome, Bronchiolitis Obliterans, Bronchiectasis, non verbal autistic, tube fed

'Some friends made themselves very scarce when things were really scary for us. But some were just so awesome. And some relative strangers were unexpectedly lovely and supportive. And have become wonderful friends who I know have my back whatever happens.' - Mum, son, 7, agenesis of the corpus callosum

'School have been an amazing source of support.' - Mum of child, 11, autism

'Met another mum with a child with same syndrome - plus some Other local Mums with children with additional needs - it's like a family!' - Mum, son, 4, 1p36 deletion syndrome - mobility issues, severe global development delay, non verbal

'The professionals I worked with, particularly the physios, were a vital source of support.' - Mum, son 36, hemiplegia

'Use carers centres, speak to other parents who will help you from their experiences. Look at AIS Scotland on Facebook as this is an advice group.' - Mum of child, 8

'Never give up if you feel defeated, you know your child better than anyone else' - Mum, son, 22, autism

'seek out unbiased advise - from people who have experienced the issue. The professionals will always protect their budgets, so don't take their words as final, whether it's education, health or social care.' - Mum, daughter, 20, quadraplegic dystonic cerebral palsy

'We find that we have very little to help us, certainly not the professionals that are supposed to be supporting us' - Mum, son, 7, with an absent corpus collosum

Impact

'I have to admit to being jealous of parents with 'typical' kids because their lives are so much easier and they can just do things on the spur of the moment, not have to plan everything with military precision. It does only happen occasionally but it's not a trait I like in myself.' - Mum, son 13 year old, autism, tube-fed

'For me, initially my experience was very negative, as I was stressed, confused, anxious, depressed, and in denial. Being a very private person I struggled on alone and didn't ask for help. However, over time there have been various interventions from occupational therapists, educational psychologists, paediatricians, senco at school and so on. A few years have passed and I have worked through the tears, guilt and darkness to become an enlightened, understanding, patient, appreciative person. I feel blessed and as though my autistic child is my life lesson.'  - Mum, daughter, 8, Autism, sensory processing difficulties, learning difficulties, Dyscalculia etc

'Even your leisure activities have got to be chosen so carefully having to take into account everybody's disabilities and how it affects them and the possible dangers you have to take into careful consideration. Even having to consider whether there's going to be lots of people present, how noisy it might be etc before you can even think about doing anything.' - Mum, son, 21, ADHD, Asperger's and depression, son, 16 ADHD, Irlen Syndrome, Sensory and spatial awareness difficulties, dyslexia, short term memory problems, son, 8, Irlen Syndrome and ASD

'I always hope that the people in our lives will not let us down but a part of me feels entirely responsible for our future.' - Mum, son, 10, CHARGE Syndrome - deaf, blind, absent vestibular system, Cleft lip and palate etc
 
'Raising my oldest son and my middle son has given me skills I never would have known such patience, empathy, problem solving skills and knowledge of their conditions' - Mum, son, 11 ASD spd suspected pda and anxiety, and son, 9, awaiting assessment 
 
'We have at least 10 different emotions a day. Worried and anxiety being the most common one. What will happen and how will she cope in later life.' – Mum, daughter, 22months old, cerebral palsy, right hemiplegia, absence seizures.

'It's tricky to do things as a family as my sons needs are invariably different to the others. It's harder work to go places with all 3 kids, and it often means as a family we split into two.'  - Mum, son, 7, Downs Syndrome with Sensory Processing Disorder

'I can be much less flexible in meeting the demands of work, and as I work in a creative job it has been difficult to find the emotional and intellectual resources for that much of the time. Dealing with his autism and his difficulty in adapting to new situations and with putting the needs of others ahead of his own (sometimes) has made holidays difficult. But many of these difficulties are also due to the aftermath of divorce - my childcare arrangements are fixed and I don't like to alter them to fit in with other projects or travel. So I take on much less travel and outside projects than I used to. I expect this is true in post-divorce families without SEN, to some extent, but perhaps not so much.'  - Dad, Son, 10 years old, ASD

'I felt very angry and guilty in the early days, I now try and channel this to get the best and be positive but I will always have guilt.' - Mum, Son, 6, cerebral palsy, visual field loss

'finding any activity that everyone can manage or want to do together is very hard. Despite my daughter been a teen I have to be back home for 3pm everyday for the end of school.' - Mum, daughter, 13, ASD, ADHD, epilepsy, dystonic hemiplegia

'It has both a positive and negative impact on me personally. I have feelings of guilt, regret, frustration and grief. The relationship between my husband and I has suffered because of this.' - Mum, daughter, 8, right sided hemiplegia.

'I wish I'd been given more emotional support to deal with his diagnosis.'  - Mum, Son, 1, hemiplegia

'...to start with the impact was negative. However, over time it has become more positive. Except with the husband who just couldn't cope and we are now separated.' - Mum, daughter, 8, hemiplegia and cerebral visual impairment

'overwhelmed jealousy - of "normal" families camaraderie with other families like ours dark humour.' - Mum, Son 9, cerebral palsy, Quad athetoid, non-verbal

'As a parent of an autistic son, now aged 22 I at first felt robbed of my child due to his lack of empathy and his fear of being cuddled or touched. I felt as if we would grow to be strangers, but this has not been the case, as I have been blessed with a child who has a strength of character a sharp wit and so many other enduring characteristics. I am so proud to be his mum and at times his best friend and I would not change his diagnosis as it is what makes him unique.' - Mum, son, 22, Autism high functioning 

'Having a child with SEN has ultimately made me a stronger person in many ways but I cannot deny that my life has been difficult.' - Mum, 18, male, ASD with severe associated language and sensory difficulties

'I am much more resilient than I ever was and after fighting for support for my oldest son I (a usually timid person) can be fierce for my boys.' - Mum, son, 11 asd spd suspected pda and anxiety, and son, 9, awaiting assessment 

'The negative impact is caused more by fighting to get the support they need, and battling against societies prejudices, rather than dealing with my 2 (now teenagers) myself.'  - Mum, 2 children, son 17, diagnosed Aspergers and Sensory Processing Disorder, daughter age 14, rare genetic condition

'There have been negative and positive changes in my life as a result of having a child with complex special needs. It has opened up my world to meet a wealth of new friends, who I might never have had a chance to meet. It has humbled me to hear and watch other parents and children face challenges, some more extreme than my own. However, overall, if I had to measure the impact on me as positive or negative, I'm afraid I'd have to select negative. It has changed me and not always for the better. I adore my son, I'd fight constantly to get the best in life for him. But...my life would be very different if he was not here.' - Mum, son, 10, CHARGE Syndrome - deaf, blind, absent vestibular system, Cleft lip and palate etc.

'We have live in help, which is necessary but intrusive. And an admin headache. We also have a constant stream of professionals coming through our home, which again is intrusive.' - Mum, Son 9, cerebral palsy, Quad athetoid, non-verbal

'He has taught me that I am strong enough to deal with anything.' - Mum, son, 9 

'On first thought you think [the impact has been] negative especially on yourself as you think of the stressful moments! But soon enough you realise it's positive and it's made me more patient, understanding, knowledgable, accepting, etc!' - Mum, son, 4, 1p36 deletion syndrome - mobility issues, severe global development delay, non verbal

'Loneliness. Have many 'friends' online and can access support but miss the face to face contact that is restricted due to my child's needs.' - Mum, 5, asd, gdd & 3 asd

'He has taught me that I am strong enough to deal with anything.' - Mum, son, 9 years old

'I can only work part-time to allow time for therapies, doctors appointments, etc. My second child does not receive as much attention due to the first special needs child requiring more attention.' - Mum, son, 5, rare chromosome disorder, GDD, Sensory Processing Issues, SLT Delay

'Supposed friends disappearing. Lack of family support. Marriage break up. Problems with working hours. Problems with childcare. Fighting to get the right statement. Fighting to get the right provision for my son. Relationship problems- partners not being able to cope with the reality of living with autism.' - Mum, 18, male, ASD with severe associated language and sensory difficulties

'I think I am a very different person to the one I was before my son was born. I'm a lot less selfish and no longer sweat the small stuff!' - Mum,son, 13, Opitz G syndrome, Bronchiolitis Obliterans, Bronchiectasis, non verbal autistic, tube fed 

Son 'has a twin brother who is very active, the balance of care, leisure and family time is such a delicate balance' - Mum, son, 10, quadriplegic cerebral palsy

'Our house is adapted. Ceiling track hoists, widened doorways, downstairs bedroom and adapted bathroom. Leisure activities are fairly restricted as he is tube fed 18 hours per day and needs a changing places toilet when we are out anywhere. When we find one we are so happy! I had to give up work. I went back part time for about 2 1/2 years but couldn't keep it up, I felt so guilty letting them down all the time to deal with my son's health issues, even though work were brilliant and understood, I was spread too thin. We have respite carers in and out of our house at certain times and that can be a bit intrusive even though they are wonderful.' - Mum, son, 9 years old

'I am the only person who I can depend on...entirely, without question, I am the person responsible for my son's emotional, physical and future well being. I always hope that the people in our lives will not let us down but a part of me feels entirely responsible for our future. I believe I suffer from Chronic Sorrow...there are triggers that occur that instantly set me back to my worse emotions; helplessness, loss, anger.' - Mum, son, 10, CHARGE Syndrome - deaf, blind, absent vestibular system, Cleft lip and palate etc.

I feel 'anger and upset because outside resources who are supposed to be there to advise and support you aren't there when you need them, such as by not replying to your calls, messages, texts and emails when you say that you have concerns and really need to talk to them, this makes you feel your all alone and that nobody really cares or wants to support you.' - Mum, son, 21, ADHD, Asperger's and depression, son, 16 ADHD, Irlen Syndrome, Sensory and spatial awareness difficulties, dyslexia, short term memory problems, son, 8, Irlen Syndrome and ASD

'We can't do certain leisure activities as a family. it does encourage us to be more insular so we don't mix with "regular" families which has both positive and negative effects.' - Mum, son, 11, chromosome anomaly

'My daughter is growing up to be incredibly patient, less focused on material things, good advocate for disability' - Mum, son, 4, asd, spd

'Feelings fluctuate between down and then fighting for something and then happy when or if succeed. And pride when daughter manages things which no-one thought possible.' - Mum, daughter, 17, Autism

'Change career to work with families with SEND.' - Mum, daughter, 12, dyslexia & dyscalcullia

'Reduced social interaction with others not invited Had to give up work couldn't cope with demands Feel isolated often from society. Excluded.' - Mum, son, 8, Autism

'I cannot work due to childcare/school holidays etc.' - Mum, son, 13, Autism, Dyslexia, Learning Difficulties​

'Ongoing grief'
'My daughter struggles with social activities and walking. I work flexible hours and her anxieties worries and meltdowns affect us daily' - Mum, daughter, 9, autism

'I had to reduce my hours and as such went from a potential senior manager to being effectively written off. However I accept this as part of being a mother specifically a mother of a child with a disability. I am now at the point where I think I may need to finish work completely. For us as a family this is very scary financially.' - Mum of child, 11, with autism

'Everyday family life is different, we couldn't decide to go out for a meal spur of the moment. Walking any where is impossible.' - Mum, daughter, 12, p36 chromosome deletion

'Friendships, I no longer go out, socialise with friends. Have anxiety just even thinking about it. Their lack of understanding. My own mental health and physical health' - Mum, 24- ASD,ADHD, MLD, 22- ASD, MLD, 20- aspergers dyslexia, 16- insomnia, depression, stress, anxiety possible ASD, 12- anxiety disorder, MLD possible ASD, 10, borderline ASD, MLD etc, 8-ASD, SPD,MLD, ADHD?, epilepsy?

'We are ruled by routine, always have to ensure he is not overwhelmed by noise, people, long hours away from home. Had to stop working when he went to secondary school and then home educate him because he wouldn't settle. My in laws live a long way away and he finds it difficult visiting them so I have to cut our visits short. Am always compromising and trying to please everyone..' - Mum, son, 14,  Aspergers, dyspraxia and Spd

'Marriage broke down as communication between us became much less, he would not listen and he stopped treating me as a person in my own right and just daughters mum.' - Mum of child, 8

'I'm divorced so big impact on relationship with new partner. Challenging behaviour can have a neg impact on siblings.' - Mum, daughter, 12, p36 chromosome deletion

'Has an affect on everything from working full time then part time and am now full time carer.everyday life challenging' - Mum, son, 22, autism

'Need to think ahead of any possible impact of the area on my daughter I.e loud noises etc and deal with these and tell her what it will be like.' - Mum of child, 8

'The main thing about my former partner and my wider family was denial - they didn't accept there was anything different and, basically, thought that it must be my fault that I wasn't doing the exercises properly with him, or the physio's fault that she wasn't helping enough - or somebody's fault! Little acknowledgement that although there was lots we could do with him, he has hemiplegia and that's just part of who he is.' - Mum, son, 36 hemiplegia

'Hard to either say positive or negative, it has had both positive and negative on all the different relationships. On the whole it has been tougher and more negative than positive but there have also been positives such as making me have more empathy and my children appreciating family time together' - Mum, son, 11, chromosome anomaly

Changes needed in society

'It would be great if new builds could take more care in making places accessible with ramps and lifts. And "changing places" accessible toilets!' - Mum, Son 9, cerebral palsy, Quad athetoid, non-verbal

'NHS should provide specific counselling for parents of children with special needs. Regular counsellors are not able to understand the extra stress, worry, unknown, difficulties an SEN child causes.' - Mum, son, 5, rare chromosome disorder, GDD, Sensory Processing Issues, SLT Delay

'Attitudes of others need to change son that people who are uniquely different from the crowd are free to express themselves as they feel best and not to be victimised for the way the look or act, I would rather be the parent of a child with disabilities who does things his way and says what he likes, than one that merely follows a herd mentality and bullies those that do not conform to some ridiculous social norms' - Mum, son, 22, Autism high functioning

'If people could just be a bit kinder, have more patience and recognise that not everyone can answer straight away, speak on a phone, or deal with money yet still look like there is nothing wrong with them.' - Mum, 2 children, son 17, diagnosed Aspergers and Sensory Processing Disorder, daughter age 14, rare genetic condition

'The word retard no longer being acceptable in mainstream Hollywood films' - Dad, son 8, Cerebral Palsy and learning difficulties

'School talks about Inclusion but often attitudes to disability are unconscious and unresolved, and outwardly 'boxes' may be ticked but it's harder to pin point or address attitudes which are not inclusive (in staff).'  - Mum, son, 7, Downs Syndrome with Sensory Processing Disorder

'...just yesterday I tried to take him on a train to London and had such trouble getting help with a ramp to board the train. A man from the ticket office did help me in the end, but said next time he would make me miss the train! Why should I have to book 24 hours in advance? Why can't we be spontaneous? Why should we have to stick to a certain timetable, and pre-decided route? What if we fancied staying longer or had to leave earlier? Why does my boy have to fit in around everyone else, every time?' - Mum, son, 9 years old

'I worry that a child with special needs is far more easily accepted than an adult' – Mum, daughter, 11, global development delay and ADD

'Could help if government realise the immense difficulties and differences of individuals and not putting them under same umbrella' - Mum, son, 22, autism

'Some people don't care of the trials etc you have and are only interested in their own wee mainstream life. Others can be very judgemental - including adults with full mental capacity in wheelchairs who disapprove of you using disabled toiletting facilities.' - Mum of child, 8

'Children at young ages be taught to be tolerant of children with special needs' - Dad, son, 4, autism

'Society is not tolerant of hidden disability such as Autism, though recent programmes are starting to address this. Even having a quiet time in a swimming pool for special needs would be valued, not everyone likes to be surrounded by noise and people all the time!'  - Mum, son, 14,  Aspergers, dyspraxia and Spd

'Less prejudice against children / adults with learning difficulties and the traits they have eg dribbling, nappies, inappropriate behaviour' - Mum, son, 11, chromosome anomaly

'More people (teachers etc) should have more knowledge about special needs of ANY kind Teachers, especially should attend courses before they start teaching in order to gain some knowledge before starting their career, ignorance has a very negative effect!! Schools should be more knowledgable in the Special Ed area.' - Mum, son, 8, ADHD/ODD, son, 7, possible ODD, maybe ADHD.

'Additional needs and 'hidden' disabilities definitely more 'catered' for at days out places - no queueing etc which is a god send! Still know people stare!' - Mum, son, 4, 1p36 deletion syndrome - mobility issues, severe global development delay, non verbal

'Although I feel society is accepting my child, there are many more things needed to change until she is fully accepted' - Mum, daughter, 20, quadraplegic dystonic cerebral palsy

'I'd like to think society was becoming more inclusive but I am not sure that's the case where disability is concerned. The paralympics has provided positive role models for people with disabilities, but in some ways that's created unrealistic expectations.' - Mum, son, 36, hemiplegia

'My child does not appear to have problems to the casual onlooker' - Mum, son, 7, with an absent corpus collosum

'More awareness about autism and the fact it is a spectrum and no 2 children are the same. For people not to make assumptions about what autism means.'  - Mum, son, 11, autism

Cerebra Stress helpline
0800 043 9385
 
Scope Face to face befriending
0844 800 9189
Contact a Family
0808 808 3555