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. 

17 thoughts on “Living in Fear as a Special Needs Parent

  1. My dear, you have written words that every parent fears we have our boy double diagnosed DS & Autisum. I feel for the hurts parents endure when those harmful looks, words are directed towards the child. My warrior daughter has on many occasions come home furious and in tears, oh believe me she stands up proud to defend her boy. I can only offer you prayer I hope my faith does not offend it is not meant to I hope you find answers to all your concerns. A Grandma in California 🙋‍♀️

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  2. I totally understand how you feel we have a 14 year old son with adhd and since he started secondary school it’s been a nightmare. Before we even chose that school we met with the senco and she assured us all the support he was getting at primary would follow him hence to say it hasnt. He isnt getting any support at all now and we have tried to get an ehcp in place but failed as the school say they can deal with his needs but there not we have tried everything but not getting anywhere at all . He has been excluded numerous times and the amount of detentions is ridiculous his now coming up to his last year in secondary school and is only getting extra time and a reader for his exams . We have had meetings with the depty head and he laughed and put his bad choices down to our parenting but his behaviour at school we dont see that often at home . It just saddens me that the schools fail our children and there is very little support . You are so brave to write about this but know you are not alone I feel your pain x

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  3. I have the same fears. You are not alone. Feels like my life. We are undiagnosed so far. But currently looking into it. School.had been a nightmare and currently homeschooling one of my kids however my oldest wanted to go back.and of course the same things are happening as before. I am extremely stressed feel like.i am.just surviving all the time. No one understands for sure. Sending hugs to all put there in the position and fears. I am ot single but feel like a single parent. I swear I am.dealing with 2 undiagnosed spectrum kids and 1 spectrum husband. All currently undiagnosed. Sometimes I feel like I am to on the spectrum.

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  4. I can relate to this as this is my life. I only have the one who is autistic and unable to attend school due to social /school anxiety. He’s a lovely boy but again he’s vulnerable. I’m a lone parent and I had to give up my job, the job I loved.
    He eats well so he’s not really missing out on essential nutrients.
    He wants to go back to school but we’ll see when next week arrives. He’ll probably buckle on school grounds. I won’t talk him I, it’ll have to be his choice and not mine.
    Anxiety is real and it’s so close to Autism.

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  5. I had a child with severe asthma and no one considered that any kind of “disability.” She missed a lot of school and it became especially bad after I lost my job due to failing eyesight and with it I lost my health insurance. Of course the school would penalize her for her absences, even though they were due to illness. Because of modest pensions, we did not “qualify” for Medicaid and could not buy private insurance. COBRA was too expensive. My daughter became increasingly sicker and died at age 28, since she could never hold down a job due to illness and hence never get on any kind of health plan through employment. Our healthcare system sucks and education system is inhumane.

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  6. Really we should be loving in packs, groups, with elders and peers around us.

    I hear your fear and if you love anywhere near me I will help.

    In the same boat. X

    Liked by 1 person

  7. Sadly I can totally resonate with this as while I only have the one child all this is us! All of it!
    I am tired of fighting and having fabricated statements made and twisting of the facts by the LA
    I have got a Tribunal pending with the LA refusing to do anything despite section F not being delivered …. so dealing with those frustrations too …
    I will stand shoulder to shoulder with this parent and any others and get our voices heard.

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  8. Dear ‘Harry’ and ‘James’’ mum – I’m so very sorry to read this, but please, please know you’re not alone. As parents of SEND kids we all feel this fear every day to varying degrees according to our own situations. Please try and find a local support group where you can talk to people, also there are a great many groups online (Some of whom, if you contact them, will post anonymously for you) who can offer advice. There are also several campaign groups, a few of which I am a member, so many to mention here, but a good old Google should help.

    I think the time I felt the most fear was when the kids were diagnosed with Fragile X Syndrome. The first was our son, then his two older sisters. We were living abroad and there was no help and no one to talk to. I had no idea how to move forward and deal with it and future implications. It was as if I was frozen to the spot. I don’t remember talking to my husband much as if we were both in our own little worlds. The insurance informed us that they were not going to pay for us to go to the clinic at a specialist hospital in the US because they didn’t not accept pre-existing conditions…only Fragile X is genetic. This was my first of a great many lessons on standing up and fighting for my children. Speaking of genetics, the other factor was the guilt I felt at having completely unknowingly passed this condition on to them.

    Once we moved back to the UK the fight continued and we even had to go to Tribunal last year for our son’s EHCP. To be honest, we should have done it long before that, but we weren’t as clued up to the system then as we are now. The last 12 years, I have to say, have been the making of me. Somehow I managed to turn that fear and lack of confidence into anger and a determination to fight to do right my children, who are now 15, 18 and 20. The biggest help has been from talking to other parents. I got such a tremendous sense of belonging and security. What I didn’t know, someone else did and we shared advice and knowledge – the latter of which is power, especially when it comes to the Code, Act and Regs of 2014.
    Although I am stronger today than I was at the beginning of this journey, of course I still have a certain amount of fear, especially of how my children will cope/be looked after when we are gone. Most of that fear is for my son, who is the most affected by FXS. I have accepted that this fear will always be there but I have a choice whether or not to let it rule my life.
    So please reach out. Please don’t wallow alone. I know what that’s like. It’s awful. The cavalry has arrived and we are all here for you and for each other. Just so you know, this link has been shared and there is one amazing lady who is hoping to be in touch soon to help you. Her story Is awe inspiring.
    You’ve got this. You can do this.

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  9. My son meets the third definition and I’m.also sh** scared of the now and the tomorrow. Additionally looking after my severely disabled daughter with life limiting needs , I cannot take my eye e off the ball with her but equally cannot afford to be too complacent with whatever is thrown at my asd 14 year old. The system is there to tell you what to do but cannot support you with how to manage a diverse non neuro typical family…

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  10. This is so True as a special needs parent l can identify with this .It was written from the heart .unfortunately some people are still ignorant .how they treat children and young adults with learning disability .My Son was recently diagnosed with depression and anxiety had to fight to get him counselling which took a While as he
    he did not want to do online or over phone . Like you l lam worried what will happen to him when lam gone.

    Liked by 1 person

  11. Reading about her story is heart wrenching.
    I can relate to some degree as i have two sons. One with autism and the other ADHD.
    It hasn’t been easy, but getting help from the community is key. We moved to a different school district here is California so they could get the services they needed. I fought hard at every school IEP meeting to get accommodations like more time for tests, complete every other math problem instead of all, preferred seating, was allowed to go on every field trip to keep them safe and more.
    Luckily, they are now living on their own at ages 27 and 35. The ADHD 35 yr old struggles to hold a job, keep his condo clean and has never dated. The other son lives in an apartment with friends and teaches taekwondo and coding classes part time. I’m trying not to enable them and pay their bills. I’m learning how to focus on my own life and take care of my own needs and those of my husbands.
    I can offer advice to get kids involved in choir or music if possible. That’s how the autistic one got through college. Hang in there parents.

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  12. Your honesty in expressing your fears is moving. As parents we always want to do everything for our children and sometimes it can feel like we are not capable of giving them everything they need. Sometimes all we can do is show them we love them and have faith that God will meet our needs.

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  13. This is such a powerful post! And my heart goes out to you! I have friends who have special needs children and they’ve echoed the same to me! And having been bullied viciously in school and in the workplace, I have empathy and compassion for those less fortunate.

    Although we all fear for our children, I can only imagine that with a special needs child, the fear is magnified a thousand fold!

    I cannot imagine what that’s like! And although no.words of mine could possibly assuage your heartache and your fear, know that I’m in your corner and cannot express the depth of my compassion for you!

    Blessings to.you always!

    Like

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