Living in Fear as a Special Needs Parent

The following piece has been submitted anonymously for obvious reasons. No parent should have to live like this but sadly this is the reality for so many parents of children in the U.K. with additional support needs. It is vital stories like this are heard.

Why I live in fear.

Fear is the emotion I identify with the most. Some days it is all I feel.

I have two boys, let’s call them Harry and James. They both have additional needs. Harry is autistic and is not in school, he has been excluded several times and now refuses to go. James is undiagnosed but probably also autistic, he goes to school but has severe anxiety and is very unhappy there. 

Harry has an EHCP, but it is totally inadequate. To get it changed I have to take the local authority to court.

I am afraid we won’t win, and that the fight to get the right help will be too much for me.

Meanwhile he is not in school (because his needs have not been met for so long) and his absences are being marked down as unauthorised.

I am afraid that I will be prosecuted.

I have asked for help from every conceivable agency. We have been turned down for a social care assessment because Harry is not ‘disabled’ enough.

I am afraid that we will be left until we reach crisis point and then suddenly we’ll end up under Child Protection, despite the fact we’re allegedly coping well enough right now.

Sometimes I’m afraid of Harry, because his behaviour can be very violent and challenging.

I do everything I can at home, but I cannot control the school situation which is causing so much anxiety and driving his behaviour. I am too afraid to tell anyone how bad it is, because I’m scared he’ll be taken away.

I am afraid of the effect this is having on James. My happy little boy has become serious and quiet and cries often.

I live on my own with my children and, because Harry is not in school, I am with one or both of them 24 hours a day without respite. Their needs are very different and there is only one of me. I can only ever meet the needs of one of them at the expense of the other.

I am afraid they are being robbed of the happy childhood they deserve. 

I am afraid Harry will end up in the criminal justice system.

He is vulnerable to influence and bullying.

I am afraid that people will not be able to look past his extensive vocabulary and see his problems with social interaction and receptive language and jump to all the wrong conclusions. 

I am afraid that my children will not have the happy future that they deserve, because rather than access to early intervention services we will be pushed beyond breaking point and irreversible damage will be done.

I am afraid that people won’t see my children for who they really are: Sweet, loving and kind little boys that still call me mummy and enjoy watching Paw Patrol, despite their age.

I am afraid for my future.

I gave up a well paid job to be a carer. I have no pension, I don’t own my own home and I have no savings. At least one of my children will probably still be living with me well past the age you would normally expect. 

I am afraid of growing old alone, as the opportunity to meet someone feels like an impossibility right now, and it feels like I have been alone forever.

I am afraid what will happen to my boys if something happens to me, because no one could love or protect them, and no one understands the nuances of their behaviours and care needs, like I do. They would be so frightened, alone and confused if I wasn’t here anymore. 

Some days all I feel is fear. 

When your child is diagnosed with autism and then dumped

When I broke the news on my social media that my child had just been diagnosed with autism spectrum disorder I had a mixture of comments. Some people were sympathetic, others shocked, and others commented along the lines of ‘this should help you get him all the help and support now.’

It is incredibly common to hear that. But it is a myth.

Both of my children were diagnosed with autism and then dumped.

Having a diagnosis has not enabled them to get the support they need.

Even with a diagnosis my non verbal son still can’t access NHS speech therapy.

Even with a diagnosis neither of them are currently receiving occupation therapy despite both of them having acute sensory needs and neither able to do self care such as dressing themselves.

In actual fact BECAUSE my daughter has a diagnosis of autism she has actually been REFUSED access to mental health services.

They have been discharged by educational psychologists claiming there is no need for ongoing support.

Despite being diagnosed their educational support plans are continually threatened with closure.

Even our trusted community paediatrician who has been monitoring their development for almost 8 years is suggesting discharge since there is apparently little more she can do to help.

On the actual day of diagnosis we were handed and leaflet and sent on our way. This is happening to so many thousands of others and it needs to stop. Families are emotionally vulnerable, confused, desperate for support and looking for hope. One leaflet is not ok.

My children had more professional support BEFORE they were diagnosed than they have had after!

Before they were diagnosed we had an abundance of meetings, successful claims for dla with huge backing from every professional we came into contact with, access to specialist nursery provision, comprehensive educational support plans in place for them both, a weekly visit from a learning support teacher, fortnightly speech and language and physiotherapist and occupational therapists support. We had six monthly paediatrician clinics and referrals to any other services we needed.

After diagnosis everyone seemed keen to discharge us.

We were diagnosed and just dumped.

We are not alone.

The system seems to come to a crescendo after diagnosis then leave families hanging…alone, confused and vulnerable.

No wonder so many autism families feel let down and despondent.

We were build up and emotionally prepared for diagnosis only to be ignored afterwards.

Families need much more than a leaflet when their child is diagnosed and better ongoing support needs to be in place.

Only then can we perhaps stop this awful policy of diagnosis children and dumping them.

This article first appeared here

They need therapy NOT a leaflet!

We have waited 5 months to see a dietician as my daughter’s weight kept dropping and the list of foods she would eat became less and less. With a complex diagnosis no-one seemed to know exactly who she should see to help her, so as usual we were passed from pillar to post. We had high hopes that finally we could get some help and support.
The appointment went well. We did everything we were asked in terms of listing all she eats and drinks and giving a comprehensive background. All seemed good.

Yet once again all we left with was…a leaflet listing foods of different colours she may like to try!

Really? Do you not think I have googled similar in the last five months of waiting?

Dear dietician, my daughter needs help, not a leaflet.

A similar thing happened when her brother was referred to physiotherapy last year. We were added to a waiting list and it was months before we heard anything. Finally we were offered an ‘initial assessment’ which, in this case, was a home visit. Once again we went through all the motions and assessments and gave a full medical background. The therapists talked about how delayed our child was and suggested lots of things that could possible be done to help. I was getting excited. My child needed this service and it looked like we could finally see some progress. After all this is a child who was so physically delayed he never started to walk until three years old. She left without giving us another appointment. I should realise what that means by now.

A week later we received the report in the post with a leaflet with some exercises to do with our son that may help. A leaflet? She said he needed therapy yet all we were given was a leaflet!

Dear physiotherapist, my son needs help, not a leaflet!

Waiting to see a dietician and a physiotherapist was nothing compared to the wait we had trying to get both children diagnosed with autism. My son was first verbally diagnosed at just 21 months but it took until he was three years and nine months, two full years later, before he was officially diagnosed. His twin sister was first picked up at aged 3 but it was 23 months later before she had her formal diagnosis. That sort of wait is not uncommon. When you wait all that time to then be formally told your child has a life long communication disorder, and in my sons case significant learning difficulties too, you want and need so much. You want signposted to organisations that can help, to support groups, to professionals who can support your children. You need people to be there to support your children and yourself as you start this new journey.

Instead I left both times with just a leaflet in my hand.

I am not sure what I thought I would get but that leaflet seemed so little, so pathetic and so inadequate.

My children both desperately need speech and language support. My son is now seven and a half and still non verbal. Neither of them have received any direct support for almost two years. Of course, if you asked the service why, they would say they have helped us. In what way? Why of course they sent me out some leaflets!!

I have a huge collection of leaflets now. I feel fobbed off by them to be honest. The money spent on these leaflets could so easily go towards real therapy that could make a huge difference to my children and so many more.

If I make a formal complaint I know exactly what will happen. I will be posted out another leaflet on my rights as a patient and where to complain to.

I haveaccess to the Internet. I can work Google and I am able to find this information myself.

I do not need another leaflet!

Dear health service,

I love you dearly but I feel so let down sometimes. You seem to have a love affair with leaflets and I don’t. There are times when they have their uses but please remember something very important:

My children need real help and that will not come from a leaflet.

Could we get more support from professionals and less leaflets please?

Thank you!

 

What holidays??

This afternoon my children start the long summer break from education. My daughter will leave her nursery years behind and begin her formal education in August and my son will have completed his first year at school and will say goodbye to his teacher for the last time as she moves to another school. Except, unlike most children, neither of them have any idea what is going on.

For ten months Isaac’s life has been consistent. He has spent 6 hours a day at school wearing his beloved red jumper and being with the same four other children and staff. He has grasped the routine of swimming, sensory room visits, school dinners and outside playtime. He has become accustomed to going on a taxi journey every morning. He has no concept of holidays at all so seven weeks without this consistency and routine will really confuse him. He will still insist on wearing his red school jumper, because that is what he always does.

He might be on holiday from school but he won’t get a holiday from his autism, or his learning difficulties, or his neurofibromatosis, or his developmental delay. And we won’t get a holiday from them either.

By the time he has adjusted to any new routine of being at home, going trips out, or eating lunch at home, it will be time to start preparing him for his return to school.

While his teacher, speech therapist, support workers, and even his respite carers all get a summer break, we, his parents, have to become all of the above and more in order to keep his development on track and continue to encourage his communication. Except, unlike the professions, we don’t get a full nights sleep, or a wage, or have access to wonderful resources. We get to do it without training, support or a break. We do it out of love.

For three years now all Naomi has known is nursery life. We have read books about school, she has had a few visits, she has seen photos of what her brother has done at school, and we have her new uniform and school bag ready. But still she asked yesterday morning what would she do when she no longer goes to nursery! Because until the reality of starting school happens she can not ‘imagine’ herself doing anything different. Like all 5 year olds she lives in the moment. Seven weeks away is like years away to her. As she hears all the staff saying goodbye, as she hands them presents to say thanks, as she empties out her tray of all her art work and letters, she still hasn’t fully understood that she won’t be back there again. As adults it can be hard to think what any new routine will look like and it can take time to adapt to changes. It will seem strange for me not to hang her coat up on the peg we have used for years now, to put her slippers in her bag for the last time or to drive out the car park knowing I won’t be there again. I find it hard to imagine my tiny five-year old will be wearing a shirt and tie or school pinafore in just a few months time. This change is big for me, so it is huge for my daughter.

So we say goodby to her key worker, her learning support teacher, her speech therapist, her assistant Head and Head teacher. I look at their faces and realise just how many meetings we have attended together over the years, how many times we have discussed my daughters difficulties, how many strategies we have worked on together and how many forms we have all filled in. They now get a holiday from all this. And while we may get a break from meetings and discussions with all these professions, and many others beside, we will still have to work on communication strategies, self help skills, independence, gross motor development and toilet training throughout the summer. Once again we will be working on all these without training, support, sleep or access to the resources they have.

Naomi’s challenges won’t disappear for the summer. In actual fact they may become more pronounced as she struggles with the lack of structure, becomes more social isolated due to not being around her peers and becomes even more attached to me and therefore more anxious when she is apart from me. While she will be delighted to not be forced into social situations or have to join in with others, seven weeks of being allowed to play on her own, being restricted by the needs of her brother, never being away from me and not being challenged in her communication with others will have a big effect on her confidence socially and in her general development.

While I will do my utmost to keep my children entertained, stimulated and happy throughout the summer I also need to keep working on their communication and social skills and their physical and mental development. And we still have hospital and clinic visits throughout as well. Except now we have to take two children along to them all.

I know all the professional who have worked with my children this year deserve a break. I know it is good for my children to have a rest from formal education too. But while they all begin that break at 1pm today the batons gets passed to me and my husband.

Seven weeks of no speech therapy support; no breaks while the children are at school and nursery to get on with paperwork, housework or shopping; no respite; no school meals; no access to the support and resources his school has to offer; and no extra funding to provide any extra support the children need.

Holidays? What holidays??