The secret epidemic affecting special needs parents

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I had a message from a fellow special needs parent this week. Two words of that message have impacted on me greatly. She wrote:

I’m struggling

It is so common for me to hear this. It is the centre piece of every support group, the most common theme on online  forums, the single most heard words when I meet up with people.

For some of those parents it is so bad that I encourage them to see a doctor for support.

In my years as a special needs parent I have found there is a secret epidemic affecting so many special needs parents and it needs talked about: We need to talk about depression.

Depression in the special needs mum or dad is so understandable but too often goes unnoticed.

People see a mum crying and think she is having a bad day. What they don’t know about is all the other nights she cried in private and no-one knew.

My eyes are more tuned to see people struggling since I have walked that path. I know what it is like to look at my child and worry for his future. I know what it is like to feel there is no hope. I recognise that feeling of failure when you realise your child is just not developing as they should. I know the pain of taking your child to hospital when they should be outside playing with friends.

It is isolating when your child has special needs and it is ok to admit that.

Society sadly expects us to be positive, upbeat and encouraging and often I see parents who are so emotionally overwhelmed, so sleep deprived, so beaten down by the system, that they have so little hope.

When you have a child who struggles in school everyday, a child who won’t eat, or has no friends, or is being bullied for being different, or who can not play in a park as the equipment is unsuitable for their needs, how would you feel? If you child was denied the support they need, or could not communicate, or is living in pain every day would you not be heartbroken?

Is it any wonder there is an epidemic of depression among parents of children with autism?

While so many are on medication, and this is vital, we also as a society need to recognise that special needs parenting is exhausting and draining.

Medication is wonderful but what about better support and understanding for our children, better care for those in society who are full time carers, training for staff so they can better meet the needs of the most vulnerable, and a society less prone to judge and quicker to encourage?

The current epidemic of depression among autism families is concerning but what worries me more is that continual budget cuts and ignorance in society is breeding not only depression among the parents but sadly I am now seeing siblings, and even special needs children themselves, struggling with the same issues.

We need to recognise this epidemic and do something about it now.

Don’t ever be afraid to tell someone you a real struggling. Don’t ever be afraid to ask for help. Together we can support each other and help make a better future for us and our children.

 

This post first appeared here.

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38 thoughts on “The secret epidemic affecting special needs parents

  1. Pingback: The secret epidemic affecting special needs parents | faithmummy

  2. Pingback: Friday Five!

  3. these children and parents need all the help and support they can get which sadly is very little more should be put into research to find out the cause of this as the problem is getting worse with more and more kids being diagnosed each year

    Liked by 1 person

  4. It is a strange state … you are deemed to be so ‘wonderful’ and ‘special’ for looking after your own child – “you have a child with x oh how terrible for you” and yet at the same time if you say it is difficult everyone is surprised/shocked that you are not managing.

    Not surprising that it is known as a ‘reactionary depression’ brought on by you reacting to the situation you are in.

    Liked by 2 people

  5. Thank you so very much from the bottom of my heart. Every single word of your letter rings true. At this very moment, (and not many others), I don’t feel alone. Thank you for that!

    Liked by 1 person

  6. This is very true and the more budget cuts the more these families suffer then so do the children and they suffer enough daily as it is. Sad we budget cut this kind of thing and footballers get thousands to run round a pitch very sad

    Liked by 1 person

  7. Thank you for writing this! Right now I am struggling! However, I had never thought of it as depression as I just keep going. And also because others seem to think I should just manage! I so agree for the need for support – tangible, practical support – and for less judgement! Oh, that people would take a step back and at least try and step into my shoes rather than judging!!! Thank you again.

    Liked by 1 person

  8. So many parents do say ” I am beyond crisis ” referal to disability social care team ” Ohhh I’m sorry your child doesn’t meet the criteria ” .
    Referal to cahms ” ohh yes we can put you on the referal list ” .. 2 yrs down the line young person receives an appointment
    Hi I think my child is struggling and feel they have more complex needs ” ohh yes referal to the communication panel we are sorry though we have many professionals who have left may take a while ” .
    ” I’m struggling to balance work , my disabled child and my non disabled children and the numerous meetings .
    ” ohhh sorry we can’t arrange a different time or date that’s all the professionals can do ”
    ” I feel isolated in meetings and feel it’s the school against me ” where do I get support . ” ohhh we use to have homestart sorry this service is no longer available .
    It’s not the disabled child causing the depression it’s a failing system with service cuts . I’ve supported hundreds of families for over 20 yrs voluntary and it’s extremely sad . I know has I am a single mum of 4 and 2 of my children are disabled

    This is a country that’s meant to work for all

    All except the most vulnerable and their parents

    Liked by 3 people

  9. It is draining and exhausting and often you don’t know who to turn to – sometimes a chat with someone who can listen and empathise can be enough. But other times we need help and helpful advice – real support. When you find it it’s amazing but unhelpful remarks – like he/she will be ok – they look fine – we who wear the shoes know. Good luck and love to all from an older mum.

    Liked by 2 people

  10. I am a special needs mum to 2 gorgeous boys. Eldest is 13 and has ADHD, ASD & Dyslexia. I have been on Anti-Depressants for the past 12 years. I’m still struggling. He was excluded from school, no friends etc, etc. Thankfully he was diagnosed early and had a statement when he was 6. My youngest is definitely on the spectrum but cannot get a diagnosis so he gets no help at school. I was and still am so isolated, no one truly knows how I feel inside. Xx

    Liked by 1 person

    • Please don’t accept being told he cannot get a diagnosis. If it’s because of the length of the waiting list, ask to be referred out of area to somewhere with a shorter one. If it’s because he has PDA and the ordinary ASD assessment tools don’t pick up the condition, ask your GP to request an IFR to get a specific PDA assessment using the DISCO assessment. If it’s because they don’t believe you that he has autism (such as because he masks in school), see if you can pay privately and if you can’t afford it, go onto Turn2Us to search for a charity that can fund the assessment. Don’t ever give up. We have to be warrior mums for our children. Diarise his difficulties daily if you can and video or audio record his behaviours for evidence for the assessment. Good luck.

      Liked by 1 person

  11. I hope that parents see that their children without special needs are also equally affected, and struggling. Continuing to encourage open conversation is so important! I’m glad you’re someone parents can go to when their hearts hurt too much. I wish my parents reached out to me when my sister and I were growing up together.

    Liked by 1 person

  12. Every one of Angela’s comments/examples ring very loud bells.
    The other side to the argument when you are trying to get your child ‘suitably’ assessed for what their needs may be, is, ‘Do you think you are depressed?’ Not as in recognising how this can all effect you, but basically saying maybe there isn’t really an issue with your child, more an issue with you, the mother. Its all your imagination, you are probably depressed!

    Liked by 1 person

      • It would appear the more I hear, its a right of passage with this situation for so many parents. Its quite shameful. If my ‘belief’ is correct, my son would be high functioning, so to an unfamiliar observer, he can appear ‘ok’ at such a moment in time. The responses you get not only make you depressed, but can really knock your confidence in battling forward.

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  13. Every word is true. For me I never wanted to say I wasn’t coping. If I did that was me finished. Worst of times I was so close to suicide as the only way out. My sister telling us what wonderful parents we were whilst denying us any support. We felt totally isolated. Tied to a system that makes us constantly jump through hoops as if we were benefit criminals.

    Liked by 1 person

  14. This hits home for me. I am struggling. I’m not coping. I’m unwell, chemically imbalanced, pregnant, and I feel I’m at the edge looking down. There’s nowhere to go. I’m so overwhelmed by my son’s behaviour that the smallest things set me off. I’m emotional, depressed, and even those closest to me dont really know how bad things are for me. I’m drained mentally emotionally financially. I’m failing to keep going. Every day is a struggle from dressing him to eating. He doesn’t eat, sleep, or talk. I feel isolated, and I can do nothing but cry and look at his beautiful face. I’m all hes got in the world. My heart breaks for the small family he has, for his future and what will become of us. I want to give up, but I can’t leave him, so I keep going forward one more day one more meltdown one more chance. I have no choice.

    Liked by 2 people

  15. Thank you for writing this, my daughter is four and has spastic Quadriplegic cerebral palsy I suffered in silence for four years pretending I was “fine” everybody would say to me “your so brace” or “you don’t get handed more than you can handle” so I never said anything I felt like I had to hold it together because everybody expected me too. Now I’m receiving counselling & on anti depressants I know it will be a long road ahead yet I feel so much pressure has been lifted from my shoulders by finally telling somebody I was struggling. I’ve recently created a blog about journey as a family and my own personal journey would love for you to check it out x https://livandphea.com

    Liked by 1 person

  16. If a parent goes to the GP to say they are struggling, the GP refers them to social services who raise inappropriate child protection investigations a lot of the time. Attitudes need to change before parents can feel able to seek help and this is the reason many struggle alone. If the system better worked for the children with disabilities also, many parents would not even be in that state.

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  17. It’s not always depression either. Sometimes it’s plain utter exhaustion and brokenness from battling the crappy system to get your child’s basic needs met. It’s that bone tiredness that you know you need a few months in a retreat alone to recover from. It’s that hovering on being run-down and physically unwell so much of the time. You don’t need to be depressed to be in the pits and wondering how you can continue.

    Liked by 1 person

  18. At last! No one talks about this but I do not see anyone anyway as I have not even got the energy to JOIN and attend a face to face regular support group

    I have no social life whatsoever which is normal now it seems , but we need to offload just as much as our children / child in our care does

    We are always talking about meeting their needs ( yes of course! ) but what about meeting OUR needs too? Are we not merely human and yet to BE merely human seems to mean inadequate as ”heading for burnout” means not coping but of course we are not coping if THERE IS NOT ENOUGH SUPPORT , RESPITE & OUR KIDS NEEDS BEING MET LET ALONE OUR NEEDS BEING MET ie they need extra support too and so do we!! 😦

    It is like everyone else is in a different world and we are in an isolated bubble and no one understands ( except other special needs parents / carers but I don’t even PERSONALLY KNOW ONE , friends pretty much did a runner , even family disappeared ) family don’t say I am doing well , they just left me to it and expect me to get on with it and if I am HONEST with family about my struggles they seem to withdraw from me even further like I am making demands on them , so the ”it takes a village to raise a child” means the villagers have all run for miles because ”they have their own lives to get on with” ( thanks )

    I have only recently got SOME support from social services thankfully but I am still concerned that they may be concerned I am not coping but I am / will WITH SUPPORT which they are now putting in place to divert a crisis ( thankfully ) because if I reach total burnout point it is no good for ANYONE especially the child in my care but I feel so much is expected and I am constantly battling with feeling inadequate when I am actually doing a ruddy good job under the circumstances and even some married carers with ”supportive partners” say to me ( patronisingly ) yes go and get the help and support you need ( coz we don’t need it / I don’t need it because my partner is so supportive ) and of course I am ‘struggling’ because I am on my own but it not crossing their mind that I might be struggling because the child in my care is more challenging than theirs 😉

    Anyway , that is my rant and I cannot share too many details for legal reasons but keep fighting for the help you need as there is no shame whatsoever in asking for help to keep your family and sanity intact

    Liked by 1 person

  19. Thank you for your post. I homeschool my two youngest. They both have dyspraxia, adhd, and anxiety disorder. My son also has tourettes and dyspgraphia, my daughter also has spd. It is a VERY isolating journey. I just started a blog on here and would like to follow you. =) Thanks again.

    Liked by 1 person

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