Words from other Parent Carers

‘So important to have time for yourself, remain who you are. Your whole life becomes about your child.’ – Mum, 25, Male, No diagnosis. Learning disabilities and health issues

‘Don’t judge my child, me or my family until you have walked in our shoes. There needs to be a seismic shift in attitude towards disabled people, particularly those with ‘hidden’ disabilities.’ – Mum

‘I’ve learned not to become too attached to coulda/woulda/shoulda thinking. It’s pointless.’ – Mum

‘Trust your instincts and you are allowed to decline appointments when there are so many and it becomes all encompassing.’ – Mum

‘Not everyone will understand, expect to be let down – sometimes by those you trusted most. Don’t take it personally, they just don’t have the ability to support you in the way you need.’ – Mum

‘Join a support group and keep looking if you don’t find the right one first time.’ – Mum

‘It’s okay to have bad days, days where you can’t fight, allow yourself time to recover but never give up – you are your child’s best advocate!’ – Mum

‘Listen to your gut feelings.’ – Mum

‘I have become more patient and it has made me realise that time is far more important than money. It makes you appreciate small steps of progress as he has learning disabilities.’ – Mum

‘Don’t try to do exactly the same with your second child as you did with your first, out of a desire to treat them equally. See each one for the person they are and try to establish what they need. I wish I had learned early on that one of the most important things I could do for my child was to stay calm myself.’ – Mum, Son, 11, autism

‘Don’t be ashamed to ask for help. It’s OK to not be OK.’ – Mum, son, 7, ASD, PDA traits

‘There were times I thought my wife was overreacting to condition and seeing things not there. I was wrong.’ – Dad

‘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 wish I had reached out for more support when he was a baby and (I realise with hindsight) I had postnatal depression. I kept telling myself I was managing and there were lots of other mums with really challenging things to deal with, but I needed and deserved help and support. I wish I had been able to connect with him more and meet his emotional needs early on.’ – Mum

‘We adopted our children and I wish I had known to push for more services (eg FASD assessment) from the start. We placed too much trust in professionals.’ – Mum

‘I wish someone had advised us to get a counsellor or life coach in the massive life decisions we had to make’. – Mum, daughter, 14, epilepsy, autism, right sided hemiplegia and ADHD

‘Mums need to know that their own needs are incredibly important, and there is nothing self-indulgent about looking after yourself. It is the only way you can have the necessary resources to look after someone else.’ – Mum

‘Be prepared for the grief to hit you again at various times throughout your child’s life. You CAN do this.’ – Mum, Son, 23 – rare chromosome disorder causing LD

‘I have found some great SEND parents and meet up regularly for support, online to share advice and info.’ – Mum, son, 14, Asperger’s syndrome

‘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.

‘Get support from Sendiass, SOSSEN for legal advice, learn your rights, get the SEN Code of practice and read it, don’t believe everything school or the LA etc. tell you. Join Facebook support groups – there’s a wealth of information and lovely supportive parents going through the same thing’ – Mum, son, 14, Asperger’s Syndrome

‘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

‘I’m desperately seeking something I can trust to support me but I just can’t seem to find the right thing.’ – Mum

‘I have come into contact with some amazing people, mainly through online support and community groups.’ – Mum

‘Being in a room with other parents of children with autism, and realising that we are not alone, even if it feels like it.’ – Mum

‘I run parent carer art groups and this has helped tremendously. Have good friends and a good social worker.’ – Mum

‘Sebastian action trust gave events for her and allowed meeting others in same situation.’ – Dad

‘The amazing primary school SENCo who fought so very hard for my child – I will always be grateful.’ – Mum

‘Being told I was not imagining difference in my son – allowed me to feel a little more relaxed and less like I was failing my son.’ – Mum

‘I have a support network and this has brought family together.’ – Mum

‘My side of the family is in denial about the diagnosis and refuses to learn about it. The only one that understands how I feel is my husband which has brought us closer.’ – Mum

‘Positive impact on my friendship circle, having relied on friends for emotional support.’ – Mum

‘Respite care from Challengers has been amazing.’ – Mum

‘Seeing people with my son’s condition as adults, living independently, enjoying life and succeeding on social media can be really uplifting and open your mind in ways I hadn’t thought.’ – Mum, son, 7, Down’s Syndrome

‘My mother in law is amazing and will either come over and help or take one of my kids for a couple of hours to try and minimise the stress. She’s amazing with my SEN son too. My best friend is also amazing and supports us all.’ – Mum

‘My faith has been instrumental during challenging times; especially when I am feeling overwhelmed and alone. Respite to unwind and declutter my mind is helpful; this is usually supported by my older children, so its not often as I don’t like to burden them. Being able to share concerns with other parents with a child/children similar to my own has been very helpful; especially if their child is older.’ – Mum

‘A teacher recognised signs of Autism but was not transparent about the exactly why she referred my daughter to the communication and interactions team. We could have pursued an earlier diagnosis and also avoided traumatising bullying of my daughter.’ – Mum

‘I wish I had reached out for more support when he was a baby as (I realise with hindsight) I had postnatal depression. I kept telling myself I was managing and there were lots of other mums with really challenging things to deal with, but I needed and deserved help and support.’ – Mum, Son, 11, autism

‘My son is loved in the places he goes and attends. However I feel that the government could do more for him and we have to fight for everything for him.’ – Mum

‘The NAS, PDA Society and Barnardos were a great source of information and support. I learnt a lot with their courses.’ – Mum, son, 7, ASD, PDA traits

What would help: ‘adapting our house to fit our family, changing places toilets as standard disabled toilets. Easier trialling of supportive equipment’ – Mum

‘How to handle aggression and anger in SEN children in particular as normal strategies do not work for him.’ – Mum, son, 4, brain damage due to meningitis

‘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

‘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

‘My faith at times has been the only thing to keep me going as I have hope for life beyond this one. My Mum has been supportive but they live hours away’ – Mum, daughter, 14, epilepsy, autism, right sided hemiplegia and ADHD

‘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

‘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

‘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 (this can be positive as well as negative)

‘Rollercoaster of emotions. Can feel pride in their achievements and sadness at what he can’t do all in the same-day.’ – Mum

‘I believe I am a better person as a result of having my child. I also have skills that would greatly benefit a workplace such as multi-tasking, compassion and empathy. I also have a fire to ensure my child gets the help and support he is lawfully entitled to.’ – Mum

‘Learnt more about the true meaning of love and seen small miracles happen.’ – Mum

‘Everything is affected.’ – Mum

‘I now have very low confidence and feelings of incredible loneliness. Also much more irritable and less tolerant than I’ve ever been before.’ – Mum

‘Guilt because I feel I should have asked for more answers from doctors and some conditions my son has experienced for longer than he should have. Frustration is another feeling which I guess is linked to helplessness but more in terms of my son’s behaviour and inability to communicate properly and me to understand him, it can be so frustrating.’ – Mum

‘Due to pressures of disabled child (in and out of hospital, exhaustion, differing opinions etc), marriage broke down.’ – Mum

‘We have to think carefully about outings as a family, we probably go out to eat less than we might have if my son wasn’t so difficult in restaurants. There are situations we decide not to go to as we know it’s going to be too complicated and not worth the effort i.e. fireworks displays, large gatherings of people etc.’ – Mum

‘It’s been a good and bad impact on me, good because it’s opened my mind to so much more and taught me understand more about special needs kids. But bad because it’s caused my stress levels to go through the roof which has resulted in me suffering from anxiety. It’s a good and bad impact on my youngest son (sibling of child with SEN.) good because he will grow up to accept others now caring about their differences. And bad because it means I struggle to have one of one time with him. It’s put a negative impact on my relationship with my husband because we both get stressed and take it out on eachother. It’s taken a negative impact on our wider family because they don’t really know how to deal with my son or understand his special needs.’ – Mum

‘Long term impact on employment prospects and financial impact. Required extended periods of (unpaid) leave to manage needs. Very limited social circle. Few places could safely visit as a family. Socially isolated. Impacted on younger children. Not able to move house for fear that funding for specialist educational provision might not continue and would need to go through educational tribunal again.’ – Mum

‘‘My wife and I are grandparent-carers for a young man with PMLD. We/I no longer exist as ‘people’.’ – Grandparent

‘The positive impacts are mainly around having a better perspective of the world we live in, appreciating things that we often take for granted, and finding that strength within. Negative around social interactions, sibling support often required on a higher level, the stress of having to plan everything in order to have time away as partners. Wider family not understanding.’ – Mum

‘Over the last year I have seen “normal” families break down at not being able to plan or do anything as isolating. Some years where we have been waiting on operations this is normal so I would say have been able to cope better putting external life on hold again.’ – Dad

‘Envy of friends with normal life.’ – Mum

‘I’ve spent years seeking out support for them and worry about their future. Their behaviour has alienated some of my family. I believe the stress caused my divorce. I won’t give up though, I will do what I can to support my children.’ – Mum

‘Some days are good and I feel so strong to fight for him and so motivated to do everything I need to but other days are bad and my anxiety to even leave the house with my son is so high it’s awful.’ – Mum

‘As your child gets older, and you still have to fight for their rights and needs, your resilience lowers in what you can deal with. I sometimes feel I can’t be honest about my feelings with friends and family as it’s ‘the same old story’.’ – Mum

‘Guilt is a constant. Guilt that I’m not fighting hard enough, guilt that my other children are suffering, guilt that I don’t have much time to spend with my partner, guilt that I don’t get to visit my family as much as I would like. I’m sad that me and my husband won’t get those twilight years as we get older, that time you are supposed to have together when the children have flown the nest. We will never have that. Constant stress, anxiety and worry about what will happen to him when we are no longer here to look after him…. it’s heartbreaking.’ – Mum

‘I am a full time Carer, it is impossible for me to work (single Mum). I constantly have to cancel plans to put my daughter first. It’s like running your own business re appointments/fights etc.’ – Mum

‘I have developed an inner strength I didn’t know I had, my son is the most resilient child and teaches me so much. My other 2 sons have so much compassion and kindness – much more than others have shown.’ – Mum

‘I don’t feel I am as driven at work as would be, as avoid overtime so am home to relieve wife of care duty.’ – Dad

‘‘My world is very much orientated to the world of Down Syndrome and I see it as a very positive thing.’ – Mum

‘For myself, there has been a negative impact on my working life and mental health, but I have also had to grow as a person in many ways. I worry about the impact on our other child and his future relationship with his brother. My husband and I have less time together and this has negatively affected our communication and closeness. My wider family aren’t really affected that much, but their relationship with our son has probably informed them a bit more about autism.’ – Mum

‘The lack of support and parent-blaming, particularly from social care, has been traumatic. The years-long battle to get services to listen and to communicate with each other is ridiculous and is a burden that parent/carers should not have to deal with on top of their caring responsibilities.’ – Mum

‘As a professional I have a far better understanding of the parent experience of having a disabled child which makes me a better clinician. I am also better informed about procedures such as EHCP applications and tribunals having had direct experience.’ – Mum

‘I adopted my daughter and my guilt sometimes derive from thoughts around “am I the right mother for her?” “Would she have chosen me?” “Do I have the right to feel what I feel as I made a choice to adopt a child with special needs, other parents didn’t have a choice?”‘ – Mum

‘Being a single parent and sole carer means I have to plan well in advance for any outings and anticipate my daughter’s needs.’ – Mum

‘I receive no respite and wish I could connect with others in a similar situation to feel connected and not so alone.’ – Mum

‘Constantly in fight or flight mode, never having time to recover. I actually feel traumatised at the lack of support.’ – Mum

‘Have had to reduce hours of employment and say no to work and training opportunities due to limited availability of appropriate childcare options.’ – Mum

‘Any outings have to be planned with military precision and there are times my child is too anxious to leave the house. Even a minor change to plans can trigger a huge meltdown response. I am unable to work as my child suffers from extreme anxiety and separation anxiety, this affects me personally, our finances and ultimately our other children are impacted too. Life can be extremely stressful day to day. I have limited time for my other children due to my disabled childs needs. Meltdowns are unpleasant and cause stress and anxiety for the whole family. I think we all feel we are treading water most of the time and only just keeping above it.’ – Mum

‘Often feel inadequate and overwhelmed. sometimes overcome with incredible feelings of love which almost scare me. Fear about the future and what will happen to daughter when we are unable to care for her.’ – Mum

‘I have learned a lot about my children and their needs, myself, the ‘system’, the SEND community, etc. I have an increased determination to advocate for those unable to do so for themselves, and am changing career (from publishing to psychology) in order to help achieve this.’ – Mum

‘Hurt and sorrow that society is so judgmental and ignorant.’ – Mum

‘It has certainly made you see a complete difference side to life like the send world the SENCO or LA etc not in a positive way. However you realise what your up against and your child is your strength!’ – Mum

‘Not being able to go to family occasions and see extended family as much as we would like. Constantly tired, overwhelmed, no money, no self care time, no couple time, don’t sleep in the same bedroom together, don’t go for family meals or holidays.’ – Mum

‘It’s opened my mind and made me grow as a person.’ – Mum

‘I feel incredibly worried about the future and if anything happens to me who will look after my son.’ – Mum

‘I no longer have any friends since having my disabled child. They have all drifted away as they couldn’t understand when I had to change plans at short notice, leave at short notice or not attend a get together at all. If you don’t have a disabled child, you simply cannot comprehend how all consuming and isolating it is.’ – Mum

‘We live in a completely ableist society and even without thinking we are discriminated against at every stage. Education, social care, health care, the list goes on.’ – Mum

‘Daughter almost died at birth, very happy she is here but the impact of her severe disability has increased our stress immeasurably.’ – Mum

‘I’ve understood myself and my own battles and struggles more. I’m more tolerant than I was 15 years ago.’ – Mum

‘Traumatised by others such as school failed to provide supervision leaving child to suffer neglect and harm. As a result injured.’ – Mum

‘Our leisure activities are extremely restricted as our younger son often refuses to leave the house, and we avoid busy situations. I have had to take a career break to support my son. Family life is often very challenging because of meltdowns and aggressive behaviour. It feels like other families are managing to do all sorts of amazing things and we are struggling to get the basics covered.’ – Mum

‘For myself, there has been a negative impact on my working life and mental health, but I have also had to grow as a person in many ways.’ – Mum, son, 11, autism

‘Makes you look at life differently and re-evaluate what is important. Have no family support locally and my marriage has suffered. We are now joint carers really and intimacy has gone.’ – Mum

‘Very active v outdoors life prior to having daughter, impact on physical health as not able to exercise as previous, work often back seat to needs e g. appointments, when off sick, distracted while at work. family live far away, much more difficult to travel with daughter so don’t see them as much as could if daughter not disabled. Socially, limited especially when very little as couldn’t take them out on my own due to daughter’s seizure disorder, difficult to socialise with other adults due to impact of caring, not able to take both children out with one parent so keeping house clean, etc difficult as daughter needs 24/7 care’. – Mum

‘I used to do triathlons and cycle – I am now too scared to cycle as if I fall off the impact will be massive – my son can’t cope without me so I can’t take the risk. I’ve become too anxious to even sit on my bike because of this’. – Mum, son, 10, ASD, ADHD, severe anxiety

‘As a family it has brought us closer, seeing [his] struggles made us unite to help him, he was suffering and we couldn’t just stand and watch. Only we can understand though….’ – Mum, son, 7, ASD, PDA traits

‘I am a teacher and I have turned my attention to studying about Down’s syndrome, the learning profile and best practice in literacy teaching. I’m currently doing an MA Education and my dissertation has a Down’s syndrome research focus. My world is very much orientated to the world of DS and I see it as a very positive thing.’ – Mum, son, 7, Down’s Syndrome

‘My depression and anxiety has became worse and sometimes it is a struggle to leave the house.’ – Mum, son, 3, autism

‘I don’t recognise my life compared to pre-disability…with each seizure I feel like a little part of me dies’. – Mum, daughter, 14, epilepsy, autism, right sided hemiplegia and ADHD

‘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, autism, tube-fed

‘My wife and I are grandparent-carers for a young man with PMLD. We/I no longer exist as ‘people’. When he was under 18, there was often help, weekly respite, etc., but since then – nearly 2 years – we have had NO respite’ – Step grandparent-carer, 19, male, Potocki-Shaffer Syndrome, a chromosome deletion.

‘health declining, mental health on antidepressants, no social life, feel judged for having ‘naughty’ sons, fighting the LA for education for both sons, fighting NHS for assessments and diagnosis. No money as neither me or partner work, had to give up job. No money for holidays, presents for partner or myself, car always broked. No respite from boys or my partner and he from me. ‘ – Mum, son, 14, Asperger’s Syndrome

‘I have became a stronger individual and more determined to fight to get my son everything he needs and help him anyway I can.’ – Mum, son, 3, autism

‘We recently lost another set of friends who don’t want to be around us. School have been amazing.’ – Mum, son, 12, ASD, sensory processing disorder, dyslexia, general learning disabilities

‘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

‘Fear about my son’s future now he is 18. Pressure of being the only one who really knows my son. Worries about my mortality – who will look after my son when I’ m gone.’ – Mum, son, 18, ASD with severe associated language and sensory difficulties

‘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.

‘I’ve lost friends, lost my marriage, been assumed to be a useless parent (even after diagnosis)…My autistic son is not the problem. The system is the problem.’ – Mum, son, 11, ASD/PDA/Tourettes/SPD/Dyslexia

‘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

‘Appreciation’ – Mum

‘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

‘I’ve had to start work part time because of the stress and difficult behaviour we have at home but even that is hard to manage. That’s led to massive finanical issues’ – Mum, son, 12, ASD, sensory processing disorder, dyslexia, general learning disabilities

‘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

‘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

‘If my son has a meltdown when we are out and about people will stare and make comments. Either ignore us or offer to help. The comments are not needed.’ – Mum

‘There is more statutory support for inclusion, and more conversations about diversity, but that doesn’t seem to improve the attitudes of people in the street / other children at school. Society is still predominantly conformist and there is suspicion and hostility towards those to are different.’ – Mum

‘Although we have become as a society much more inclusive I personally think people have become less tolerant.’ – Mum, 25, Male, No diagnosis. Learning disabilities and health issues

‘Accessibility for children in disability buggies/wheelchairs. People actually acknowledging your child!!’ – Mum

‘Particularly dispiriting is the shame and blame culture. Suggested parenting courses by professionals has now become a red flag for my husband and I.’ – Mum

‘My son’s disabilities are hidden so we get very little emotional or practical support. He appears fairly normal and people assume he’s just badly behaved so we get looks and comments rather than any help at all. However the use of lanyards eg at airports etc has been very helpful and people are understanding the term autism more widely’ – Mum, son, 10, ASD, ADHD, severe anxiety

‘The attitudes of professionals (social workers and SEN department) are most in need of change. It has frequently felt that they have not believed anything we say. When this is coupled with very violent behaviours from our children the situation has been extremely difficult to endure.’ – Mum

‘I wish we were told about Carer’s Allowance and DLA earlier as my husband could have had this when he wasn’t working because of my son.’ – Mum

‘I think it’s easy for people to jump to conclusions about a child who can’t communicate properly or who seems quite immature. Mostly people are very open to my son as he is friendly and out-going. I think people need to have higher expectations of educational achievement and not base their ideas of intelligence on how well someone can speak.’ – Mum

‘There is more statutory support for inclusion, and more conversations about diversity, but that doesn’t seem to improve the attitudes of people in the street / other children at school. Society is still predominantly conformist and there is suspicion and hostility towards those who are different.’ – Mum, son, 11, autism

‘My son can strike out suddenly and for no reason, other parents can be quite rude and harsh and seem to think he is just a naughty boy and I’m a poor parent who can’t control him. I’ve been told on several occasions to control my child better.’ – Mum, son, 4, brain damage due to meningitis

‘Very few people are able to interact in a genuine way with [him], mainly because he is non-verbal and is in a wheelchair. People will actively avoid us when out.’ – Step grandparent, 19, male, Potocki-Shaffer Syndrome, a chromosome deletion

‘People need to be educated, but I think it’s easier for them just to judge and wash their hands of the issue.’ – Mum

‘t’s been very difficult,and it’s getting worse with cuts to services and people being less tolerant in society.’ – Mum

‘Still massive problems in getting through to people about hidden disabilities and that it’s not about bad parenting’ – Mum, son, 12, ASD, sensory processing disorder, dyslexia, general learning disabilities

‘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

‘I do think society is becoming more aware and tolerant but I also know there are times I have wished she looked ‘more disabled’ as people have looked at the strange comments or behaviour at a teen who at first glance looks ‘normal’.’ – Mum, daughter, 14, epilepsy, autism, right sided hemiplegia and ADHD

‘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

‘Funding services properly and training staff so people don’t waste half their lives fighting for correct support and the education they are legally entitled to’.  – Mum, son, 11, ASD/PDA/Tourettes/SPD/Dyslexia

‘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