Dear Sir and Madam,
I am writing to you in order to inform you of the current situation regarding my son. I write the blog, Someone’s Mum, which has chronicled the ups and downs of our diagnosis, and I will be publishing this letter there. With your permission, I would be happy to publish your response. I am writing to both of you as we live on the border between Gloucestershire and Worcestershire and our NHS and various health services are split between two constituencies.
Sir, Madam – we are very lucky to live in a country where, when we need it, help is never far away.
If I had problem with my health, I would go to my GP, as I have done many times. When I was pregnant, I was often seen instantly. When I had a persistent cough, I was referred for an x-ray within two days.
If my son had broken his arm, I would take him to A&E. There might be a wait; it would be difficult. He would be in pain and too young to understand what was happening. But, eventually, kind and over-stretched NHS staff would set his arm, make him better, and I would be so very grateful.
When I suffered from crippling anxiety, I saw a counsellor within six weeks and was able to continue seeing her for ten sessions – it was a great help. If someone mugged me, a police officer would come straight away. There would be people to comfort, organise and help. I would not be left to fend for myself. Amongst the pillars of our liberal democracy are the welfare state and social security system that are the envy of the world. Even now, in the face of difficult cuts and disputes, I am proud to say that I am part of it.
But, just recently, I have felt something I have never felt before – even when I have had to wait, even when the service has not been as I might have hoped, even when I have been waiting in A&E for three hours – I feel resentment – and it is growing.
I am nearly thirty-five years old. I have had a job since I was sixteen. When I left teacher training at twenty-three, I went straight into employment and there I have remained. I am a secondary school teacher and I have dedicated much of the last decade to helping other people’s children.
My son does not have a broken arm. I do not need an x-ray, or a counsellor or a police officer to help me with a crime.
My son has autism
And he has just been left.
He was first referred to the community paediatrician in October 2015. She agreed almost at once that he was autistic. He was referred on for blood tests, occupational therapy and speech therapy. The first results took over four months to arrive. The final ones arrived just a few weeks ago, over seven months after the blood was taken. For seven months I was terrified of what those results might show – muscular dystrophy, chromosomal abnormalities. When they finally came back clear, that worry was such a part of my life, my experience – even the relief seemed a little hollow.
There is no sign of a single therapy referral as I write this in May 2016. Eight months without even an appointment to look forward to. I was told initially that the wait was ten weeks.
My son speaks but is very restricted by his need for conformity and predictabilty in conversation. They say that children are most receptive to learning language when they are his age – who knows how much we may have helped his ability to communicate and express himself if we had started therapy months ago.
My son struggles greatly with his motor skills – at three years and seven months he cannot climb stairs on his own, struggles with cutlery, cannot dress himself or use the toilet. Nursery will not put him in with his own peer group, despite the fact that he can keep up with most of the lessons there, just because they say his physical requirements require one-to-one supervision – and there is no funding for him. I do not know what physical therapies I could be doing to strengthen his muscles, improve his co-ordination – but I know that every day I see the gap between him and his peers and, every day, I feel like a failure.
His rigidity of thought and sensory issues are extremely difficult for his father and me to deal with. He often sobs for most of the day, simply because we have said a phrase slightly wrong, or the noise and bustle is too much for him. He is often in pain. We read books about autism, try new things. But ultimately we are lost, alone – we suffer with him in our desperation to help – and our feeling of utter impotence. I have felt anxiety, know what it is to be frightened and alone – I see the same fear in his eyes and I cannot help him.
In a year and four months, my son will start school. I do not doubt that he will need constant one-to-one support. I do not know where to start in applying for this. I do not know how to look for schools, whether he may need more specific specialist help.
I have seen no one regarding my son since October last year. I am no closer to a formal diagnosis, even though his condition is certain. I cannot hope to get him the support he needs until I have one.
If he is left for much longer, my inability to help him, the state’s inability to help him, will begin to have a profound detrimental effect on his future and his well-being.
And he is one of thousands of children with autistic spectrum disorders and other disabilities or special needs all over the country – and they are just being left. They are being left, their parents are being left to cope, alone, uncertain and desperate.
They are being left not because their need is less, not because they are not suffering, not because their requirement is not urgent. They are being left because it is easy to leave them. They are being left because it is easy to put meltdowns and behavioural issues down to poor parenting. They are being left because their struggle, their pain, their need is not always as easy to see as a broken arm or as simple to address. They are being left because parents give up, struggle on alone, do the best they can – when they should not have to.
I understand that the NHS is stretched. I understand that not all can be given the same priority, that lines must be drawn, compromises made.
But I cannot, will not, allow my son, and the hundreds of others, to become the casualties of a flawed system. It is not fair. It is not what the NHS is built on. The well-being and future prospects of these children should not be at the bottom of the list of priorities.
I would be extremely grateful if you could use your power and influence to find out why waiting lists for autism therapies and referrals in Gloucestershire and Worcestershire are so ridiculously long. I would be grateful if you could use your expertise and connections to tell me how I can make sure my son gets the help and support he needs. I would be grateful if you could support the campaign to raise autism awareness, bring these issues to Westminster, and make sure that my son, and all children with special needs and disabilities such as his, are not allowed simply to be left.
Yours Sincerely,
Danielle –
Someone’s Mum.
This letter was emailed to Laurence Robertson and Harriet Baldwin, the MPs for Tewkesbury and West Worcestershire, on Monday 9th of May.
Dear Danielle, my heart goes out to you, because I understand completely what you’re going through. We are the same here in Glossop, Derbyshire. My son, who will be twelve in June, has just recently been diagnosed with ASD. He seems to fear life itself sometimes; he refuses to do anything, try anything or accept and/or understand that we’re trying to help him and support him. He won’t go to school, he simply refuses but whenever we’ve tried his anxiety is palpable and I just can’t force him in, it’s heartbreaking. The school are doing all they can inspite of the fact that he is not actually attending. He sees a psychiatrist at CAMHS regularly but he would avoid that too if he could. We feel alone. We feel like we’ve failed him and because it impacts on my daughter so much we carry a huge weight of guilt too. I’m so frightened about hi future; he won’t let me homeschool him and he argues everyday about the same things: teeth, clothes, washing, food, screen time, his shoes, his cutlery…. To name a few. This all sounds very negative. The flip side of all this is his loving nature, wit and comic timing, his drumming skills and his incredible perception of other people s vulnerability. Everyday I have a knot inside, as does my husband. I want to scream and cry some days, then I want to live in the middle of nowhere with him so he’s safe and some times I want to walk away . I fully support your letter and if I can help in anyway I am more than willing. (Apologies for going on btw). Best wishes, Libby.
my friend fought for 8 years for a diagnosis, too little too late, good luck x #bigpinklink
There are, believe it or not, even fewer services and worse provision for autistic adults. I wish you luck and happiness.
Gosh this brought tears to my eyes. The part about him sobbing and being in pain…bless his heart. My heart goes out to you. The wait for an appointment is disgraceful, it sounds like you have been left in limbo. I hope you get the appointment and the support you need asap. Sending love x #bigpinklink
I really hope you get a good non-standard lines reply to this one. For what you have written and the two of you have endured it’s the very least they could do.
It may result in a letter to Department of Health for response.
I hope you both get the support you need.
#BigPinkLink
#KCACOLS
You might also find some help in the Lords. Unlike MPs they are not restricted by constituency.
My post http://wp.me/p6SLXs-vl has links to online tools you can use to identify Lords and All Party Parliamentary Groups that may be able to help press your case or the issues raised by it.
I highly commend you for writing to your local MPs we are in Worcestershire and waited to see a paediatrician for over a year, I’ve asked for a hearing test for my 4 year old daughter 3 times since October 2015. We have been on a waiting list to see an occupational therapist since August 2015. They say she has ‘sensory issues’ with traits of ADHD and Autism – but won’t diagnose anything further until 6 years of age. I’ve been told on numerous occasions that my parenting is to blame for her behaviours at home but I’ve researched with SPD children will hold in their sensory overload’s all day in fear of embarrassment then wait until they get home and explode! Which is what my daughter does where she feels most comfortable. I fight for her cause everyday I’m currently being treated for anxiety and depression, I have completed 2 different parenting groups and we still have issues at home, most days it’s unbearable she will hit me and my partner and wrestle roughly with her 14 month old sister. She requires constant supervision and only last week jumped off the sofa and hurt her arm, and yesterday ran down our stairs so fast she fell and received a carpet burn I’m constantly worried that she seriously hurt herself or her younger sister and that we, as parents will be to blame even though I’m busting a gut trying to keep them safe. I’ve had no help in terms of transition to school my partner and I are anxious that as she spends more time at school and is given set tasks rather than free play that she will kick off. I’ve taken it upon myself to send the school all the relevant info regarding my daughter as I do believe for the most part her pre school think that I’m making it all up. I just wish they could see her at home! I’ve even taken to videoing her but no one ever wants to see them! I’ve been an Early Years SENCO in the past I will not give up on my daughter!
I really do hope that this makes the MPs stop and think, we are both really scared about Amber’s future and how she will cope as a hormonal teenager. If you have any sort of petition I’ll be happy to sign and support in any way.
Thanks for making everyone aware 🙂
Nicki ~ (Sensory Sensitive Mummy.)
It’s an awful situation. I was very lucky as my daughter was diagnosed quickly and offered help, but as they years have gone by the help as definitely dwindles. She’s supposed to be having physio but we are still waiting for an appointment since last October. She gets help at school which is good, but she has a lot of other medical issues too. My son was diagnosed quickly too, but not until he was 12 (it was my fault) we had lots of problems with school but then he was put in a special school where he did really well, and he did well in a special college too. But he’s an adult now and last year he had his only help group taken off him because he refuses to claim JSA and look for work. I’ve not been able to find him any help elsewhere.
What a tough situation to be in. I can’t really offer words of comfort but I am glad you have made a stand and I hope you get the support you and your son need. #kcacols
That was a powerful letter and I hope you get the response it deserves; one of action as well as words.
Oh Danielle, my heart is breaking for you. For you, your son, your family, and any other family enduring this frustrating lack of resources and input for this very complex and difficult to manage diagnosis. This letter is so powerful, and so moving, that I will be surprised if it doesn’t spark somebody into action. Like you say, you would go to the ends of the earth to do the physical and speech therapy exercises required to help your son, but not knowing what they are to do them is so horrifyingly frustrating that I simply cannot imagine the anxiety and toil this must be taking on your own well being. I really hope you get the answers you need, something has to happen as you simply cannot live like this anymore, it shouldn’t be allowed. Please keep us updated on the response you get. Xx
#bigpinklink
Brilliantly said👏🏻 my child is 5yrs, Hypermobility syndrome, gender issues and possibly asd, I do not stop fighting for help for him, he has Toileting issues, can’t cope with stairs, eating etc, he’s 5, it is a constant battle to be heard as it is all to a familiar story for the system to blame good old mum, and send to a parenting class while the child goes without much needed help!:( the system must change now 💙❤️💜💛💚
Do they have ABA in the UK ? They seem to have money for everything else over there, free medicine for old people and living expenses for the unemployed (which they should) . But the Government refuses to treat the autistic ,Is this discrimination?
I understand everything you’re saying because we’ve been in a very similar situation. My sons difficulties started to emerge during his infant/toddler years and included difficulty eating, toileting delays, clumsiness, hyperactivity, unimaginative play (classic lines of cars), poor eye contact and poor speech. I knew something wasn’t right and yet the health visitor insisted he was behind because he was a boy (he failed his development check ups). I wasn’t happy but naively followed her advice and waited for maturity. By the time he started school there hadn’t been much improvement, in fact his meltdowns were getting harder to manage. His nursery/reception teacher had picked up his difficulties but no one thought to refer him. Instead whenever I raised my concerns about my son’s development I was accused of being an over anxious mother. As his learning difficulties started to emerge I challenged the school again and yet again I was blamed. Our relationship with school started to break down so we went to the GP who referred us to the paediatrician.
The paediatrician only assessed my son for ADHD and quickly ruled this out when the school said he was calm and attentive at school (this wasn’t the boy I knew). Having eliminated ADHD the doctor said he was going to discharge my son but I wasn’t having it. I knew something was wrong so I said to him, if my son didn’t have ADHD then why was he clumsy, why couldn’t he eat properly, why was his speech unclear etc. Reluctantly he said he’d refer us to the child developmental clinic.
Eighteen months later when my son was 9 years old he was diagnosed with ASD, SpLD and hypermobility. Unfortunately the diagnosis came too late as several months later he had a major breakdown and became school phobic. (Even though I gave the NHS report to school, school refused to support him. I have no idea why they didn’t want to help him. To this day I can’t understand why a school would ignore NHS advice and subject a young disabled child to misery.). There then followed a year of intense care at home and a fight to get him statemented and into a special school. However, I don’t think the trauma of his primary education ever left him as his secondary years were blighted by severe anxiety and fear and long absences from school. He left school with few qualifications but is now at our local college redoing his education. I’m proud of him but I can’t help but think that if he’d had an early diagnosis and support then he wouldn’t have suffered as he did. As it was everything was left to us and whilst I have been able to rehabilitate my son back to health and into college, it has meant giving up work to do this. Late diagnosis, poor schooling and no support can have a huge impact on the whole family. More needs to be done to prevent children like mine falling apart.
It’s shocking that your son has had to wait so long and still got no response. Well done to you for writing this, I really hope you get the support you all need
Debbie
Early support makes such a difference – fingers crossed that your letter helps to get things moving …. first for yourself, and secondly for a wider review in your area.
I am looking forward to reading the MPs response.
I really feel for you, and hope you get some response. I know it is getting more press recently but awareness around autism and how we can help young children needs to be made. Your letter is a great start in the right direction and so wonderfully written #KCACOLS
I hope they get back to you soon! Beautifully written post, I’m sorry that it’s so true though! Hoping there influence can help your little one and hundreds like him. Big hugs Xxx
Oh this must be so difficult. A hugely powerful letter, and one that I really hope gets answers and actions for you and others in your situation. Looking forward to hearing the response…
#bigpinklink
I really hope this gets an appropriate response, and soon. I agree that we are very fortunate to have the nhs, and for the most part it’s a wonderful service, but it’s shocking for so many families to just be left alone to try and cope with situations like yours. All I can say is that you’re really not a failure, you sound like a wonderful mother, doing everything in her power to help her child. x #KCACOLS
This was heartbreaking to read, I have a friend going through something similar with her son. He is just 2 yet he has had to wait almost a year without seeing anyone or getting help with his development issues. I really hope you manage to get something sorted soon #kcacols
Oh Dannielle, I’m so sorry! It is really heartbreaking to read how all of you are affected because of this. I really hope you get a letter soon with an appointment. As you said, the sooner he gets some help the better. Sending you hugs lovely. Hope all gets sorted soon. Thanks so much for sharing this letter at #KCACOLS. Hope you can join us again tomorrow, x
Danielle…you made me cry! Although our appointments and referrals have been a lot quicker than yours I feel very similar. The group sessions following diagnosis did not suit our daily routine but yet no alternative was offered. The hope of support once a diagnosis was given has fallen flat and now my sons school are failing him too! All because the support system isn’t where it needs to be! I really do hope you get a reply and I hope that it has some answers that you and your little man so desperately need. My heart goes out to you lady! Thank you for linking up to #spectrumsunday I hope you have something for me again this week 🙂 xx
This post is so well written & so well said! I hope you get a response soon. Keep on top of them with letters & phone calls until you do! Thanks so much for sharing with #BloggerClubUK