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Why Do Things Have To Get So Bad

Why Do Things Have To Get So Bad

I was reading a very moving post by my friend Marylin who wrote this wonderful post Family In Crisis . Please go and take a look, unfortunately Marylin’s situation will be resonate with so many people.

It started me thinking, why do things have to get so bad, before someone will listen ?. Why don’t they listen to our pleas and cries for help ?. I can only share my experiences.

I have found having a child with special needs in this case autism, gene disorder of gene 16p 11.2 microduplication and severe global delay development. All adds up to a very unique child that needs lots of attention, looking after, times that by 3 and you will get a rough idea of what life is like for me having 3 children with autism all with different/complex needs.

Life for our family has never been easy or simple and I definitely think our family have had their fair share of life’s knocks.

I had been pleading, asking for help/support when my children wouldn’t sleep, when my daughter became aggressive. When I became isolated and wouldn’t venture out from the security of my own 4 walls. Except to do the school run where I would run headlong into playground politics. If your face doesn’t fit your not worthy to talk to. The funny looks I would get because my baby made weird screaming noises and not the noises of typical baby.

It all became too much and right there in the playground I broke down. I sobbed my heart out. Do you know not ONE person came to see what was the matter. I remember going to the teacher and asking if I could talk to her. It all came out how I wasn’t coping, wasn’t sleeping.

Within a week I had a lovely lady who came to visit me and we sat just chatting, it was great I poured my heart out to her. Told her all my worries, my concerns. Why did it need to get so bad before someone to listen ?. I was allocated a social worker who was more obsessed with the house being spotless than she was helping. Who incidentally had NEVER worked with autistic children and only been on a course – her words. Didn’t really do anything for us despite giving us grief.

The ones that helped the most, the ones that sat and listened to my pleas were my doctor and health visitor. They sat up and listened to the fact I wasn’t coping. They were the ones that managed to get Zak with all his complex needs into a specialised nursery to allow me some respite.

So the question is why do things have to get so bad , so we hit rock bottom before anyone will help ?

About wendy hirst

I am a X-box gamer, film lover , blogger, reviewer, a stroke survivor, loves tea and camping. Mum to 4, 3 of whom have autism.

10 comments

  1. It is so annoying that everything has to be a fight when support is so so important @kikicomp

  2. Firstly, thank you so much for mentioning my post. I wasn’t sure whether to write it, but I felt j needed to let others know that being labeled as a family in crisis is actually a really good thing.
    You know, I’ve been mulling over the same thoughts. Why do they wait until we aren’t coping anymore?
    And you know what I realised was, it was me who didn’t let on that I wasn’t coping. Not till I was at breaking point.
    My Parents have always said I’ve got a smile for everyone. And they’re right, I like to chat and try to make the most of things. I hate talking badly of life with Max, because I want people to see the good in him.
    So I just didn’t say how difficult it was getting.
    Not until I broke down at the nursery last year when I was away to pick up the wee man.
    I think I have them all a bit of a fright as I always seemed to be coping well. Always looking at the positives, always a smile and a kind word to others.
    I think there comes a point where we have to admit to ourselves that we can’t do this anymore, and it’s not till then that others will really know how hard it’s become.
    That’s my two pence anyway! I should make it into another post… ;)
    Marylin recently posted..Family in CrisisMy Profile

  3. Some people are so selfish & uncaring Wendy, they have no idea what you have to cope with, don’t want to know, the strain must be so unbearable for you all. I remember once in the centre if Manchester, I was lifting my husband from the car to his wheelchair when I slipped & we both went down, I could not lift him from the pavement because his feet kept slipping, people just kept staring & walking past us, ages after a really kind Pakistani man helped me to lift my poor boy back into the car, I was so distraught & sobbing, how could people be so cruel.Since then I have learned that there really are more kind people in this world than bad.
    God Bless you & your lovely family & Marylin & her family xx

    • Thank you Yvonne

      That’s awful no one helped society is so crazy at times. So nice to hear there was someone with a bit humanity and compassion that stopped and helped you . xx

  4. there just doesn’t seem to be any joined up thinking in the system and those that are supposed to know what to do to help often don’t. I remember it taking over 6 months just to find out how to get an OT referall for our son because we just got pushed from pillar to post and no-one knew how to refer, and then there was a further 9 month wait from then when we did get a referal. Even now it is about once a year they can fit him in due to lack of resources and i just wonder if they had done something about his OT needs sooner, perhaps schooling would have worked out better for him and saved the schools resources but the whole system wasn’t ‘joined-up’ enough to see it that way. I’m so sorry no-one cared when you needed it most. We think of you often. much love xxx
    thebeesleybuzz recently posted..First time at toddler group!My Profile

  5. Oh Wendy, I’m so sorry to hear how low you felt but glad you got someone to talk to in the end. My J is in special school but I have felt that isolation at his brother’s mainstream school at times. Some other parents appear very uncomfortable that your child is “different” and don’t know how to deal with it.

    Your post has just reminded me that J actually got excluded from his first nursery for needing too much attention. It was totally unlawful but I was too weak to fight at the time (and didn’t want him to go there anyway after their attitude). I fortunately then found a fantastic nursery where they welcomed him with open arms and placed him almost 1:1 with a great member of staff who had several years’ experience of special needs. The staff were all lovely to talk to and it was the first time that I felt anyone really cared about what our family was going through.

    But I think Marylin is right that we have to reach out and let other people know we need help. Like many of us I was putting on a brave face until things reached crisis point.
    Ruth Mancini recently posted..The Lives that They DeserveMy Profile

    • Thank you Ruth

      That’s awful about J’s nursery pleased you found one that understood and met his needs.

      Yes I agree with Marylin that we do put on a brave face don’t we

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