Tuesday 9 June 2015

One line on a piece of paper

So back to reality with a bang. This is the one I think is probably going to take the most courage to post. But I reckon I need to get it all out there, as it's an important part of my journey. And maybe writing it down it will help me process what's happened and move on.

So the GP was fantastic all those years ago, and referred us onto the Children's Mental Health Services. But sadly this is where the system began to let us down. It actually took 4 and a half years to get a formal diagnosis for our son. That's almost 5 years of confusion, isolation, stress, paranoia, and at times I have to admit absolute bloody despair. We have now had the diagnosis for 1 year this June, and it's like it was the key that opened up a world of support that we should have had access to all those years ago.

It seems so wrong to me that families should have to wait like this. I can't think of any other condition that has such a long waiting list for answers. Those 5 years pushed me to my limit emotionally, and mentally and I consider myself to be a reasonably strong person!

As our son has grown up his needs have dramatically increased (he is now 11). His capacity to cope and mask his difficulties got harder and harder for him to manage. He would literally explode at home after a day at school, or a football match, or going to a friends house. Which led to us seeing a very different child at home than the child everyone else was seeing. I felt that people didn't believe me. I felt my parenting was in question. "Well he behaves OK for us," or "he doesn't seem to have a problem here," were comments that got thrown my way on a regular basis when he was younger.

I would walk in the door and he would lash out, swear, have a meltdown because he had been holding it all in until he was in his safe place- I was his safe place!

Can you imagine how this felt as his mother?

A gut wrenching feeling that people questioned your relationship with your child, and questioned your parenting- not for weeks or months even- but for years I felt like this.Whilst also trying to be strong for my family and hold it all together with no answers from the powers that be! I was also battling my own demons as I suffered from depression, and often I felt like a punch bag because he didn't feel safe enough anywhere else to be himself, other than when he was with me.

I was confused, drained, and becoming more depressed by the day.

I was also struggling to hold down a full time and demanding job which I loved with a passion. And in addition to this I was trying to find a way to help his sisters, and my husband cope with living in a house that was at times incredibly stressful. I couldn't give them a definitive answer as to why his brother lashed out at them or wouldn't play nicely, and was trashing the house after school. All I could do was my best to hold it all together because I knew it was his fault. And I make no claims to be a supermum or want people to feel sorry for me, I just did what I had to do to get through each day that's all.

During this 5 year period it was suggested to me that I needed the support of social services, family support workers, CAFS, parenting classes etc etc  by various well meaning people, as his needs became more apparent to them and difficult for them to manage. And ultimately they didn't know how else to help me I suppose - but each time it chipped away a little bit of my strength and resilience. I felt like screaming at them, you know what I bloody need- a diagnosis (hmmm and maybe a holiday by myself on a beach in the Maldives would be nice too if you really want to help!)

But seriously I just needed someone to say to me - I am really listening to you, I understand you know what's best for your child. And most importantly I needed someone to say to me - it's not you Mrs M,  and your son's not naughty- he has Autism .

That's what I needed!

Then I knew could have got on with the job of fighting to get him the right help and access to services that he so desperately needed. I knew in my heart that when he was getting the right  help he would become a much happier person and as a result of that we could adjust our family life around him. That's just the way it has to be- I knew that 5 years ago!

But instead what happened was that I became ill and exhausted, and our marriage became strained. I became paranoid and defended my sons every action as the lines of behaviour and autism were so blurred in my foggy mind that I felt like I had to defend his actions all the time. And so I become his voice in a world that was ignoring his needs, and none of it was his fault, the system was failing us all. My daughters needed counselling and struggled to accept his behaviours and so much of my attention needing to be on him.

We forced him into situations at the advice of others despite it going against our better judgement, and it always ended disastrously for all involved. But most of all we have been prodded and poked as family for years now. I struggled at times to see light at the end of the tunnel, or even myself in the middle of it all.

That's it I think- I lost myself in all the mess and stress. And I was so focussed on getting the right support for my son that it was easy to get so bogged down in it all as my kids are my world.

I felt so overwhelmed and could have given up quite easily on many occasions. I remember phoning Camhs in tears one day asking for them to see him and help me, as I was worried about his mental health and hyperactivity. And their response was to tell me to turn up at a children's centre in tears, and that would kick start a crisis action. No way was I going to do that! What we needed was to be told what was happening with our son, to have answers. I was far to proud to turn up somewhere to have yet more strangers prod at us and question my parenting. And why should I- I was still strong enough to realise that it was the system that was letting us down, none of this was our fault.

If I had known back then his sensory processing disorder was causing him to sensory seek and make him hyper it could have made his and my life so much easier. But I can't look back for too long and ponder on the 'what if's'.

And  its not all been doom and gloom so don't you dare feel sorry for me. My faith has helped me get through the really dark days, and I am blessed to have such wonderful friends and family around me.
It's been a steep learning curve for all of us! And we have got through it all together as family.

Over the last few years we have come into contact with many professionals who haven't benefited our lives to say the very least ( that's me being polite). But when I found an advocate, someone who did listen to me, and really heard what I was saying. Someone who took the time to get to really know my son, well I tried my best to keep them in his life, as I knew they would be able to help him become a happier person. They would help him be more comfortable in his own skin, and not try to change him into what they thought he should be. He has had the support of some wonderful teaching assistants, doctors and specialists these last few years and without their help we wouldn't be where we are now. To them all I am forever thankful

So fast forward to where we are now-
Well I left my job to care for my son full time. And as hard as that was because I love my work, it was definitely the right decision to make. He needed to attend school on a part time basis earlier this year which would have been much harder to juggle had I been at work. I am adjusting but still miss my job so much. But who knows what the future holds as I am loving writing about out lives and sharing our story.

His sisters are settling in their own schools, they still struggle on occasions but on the whole, the diagnosis has helped them both accept him for who he is. They are beautiful, caring and compassionate girls despite the teenage mood swings. And my hope for the future is that they can become closer to their brother as they grow up with more certainty.

His diagnosis and subsequent Education Health Care Plan has now allowed him to access more specialist education and he has stopped self harming. I want him to be happy with who he is and learn to make sense of the world around him. He is happy- so I am happy- its as simple as that really.

There is hope, and for the first time in a long time I feel a bit more in control of our lives. My husband is taking me away in a few weeks for a romantic night away (catching up on sleep) while my amazing sister spends the weekend here with the kids for me. And you know what, I  am looking forward to watching all my children reach their potential in the future and finding myself again.

 All this because of one line on a piece of paper that we waited so long to hold in our hands
                                           Diagnosis of Autism

                                       (Thanks for reading I know it was a long one !) x


  1. I remember when someone came round to see me about Mel, at this point I felt crazy and thinking maybe it was me that couldn't cope with her. With her being my first child I didn't know what to expect, the doctors told me she was just lazy. I mentioned to this lady I felt like it could be autism, she grabbed Mel's face and said "she gives good eye contact, why would you say such a thing about your own child" I burst in to tears. I have anxiety issues and that whole experience set that off. So glad I moved out of that area, as soon as I did I finally had people around who wanted to help it makes such a big difference. Its a shame so many people have to go through these terrible experiences.

    Enjoy your night away you definitely deserve it :-)

  2. I cant believe she said that to you! no wonder you were upset!

  3. My little girl is now almost 7 and has just had her first assessment. I've been trying to get help since I began noticing things when she was two years old. It began with incessant hand flapping. She would pace up and down, up and down, flapping her hands. I didn't know what it was or why, but I I had already got three other children, I knew it was something I hadn't seen before. She would also, and still does, flex her fingers and tense up when excited or anxious, she stopped responding to her name, she would have terrible 'tantrums', would never sleep or stay in her own bed, she wouldn't play with toys 'correctly', just spin wheels or pull the strings repeatedly. She will become mute in the presence of doctors or health visitors or even teachers she's unsure of, she gets upset and lashes out if her clothes 'don't feel right'. She will hit me if she feels out of control of the situation, crying, screaming that there's something wrong inside her, which absolutely breaks my heart. She detests being away from me, and her father, who I am no longer with, says it's all in my head, even though I have terrine full backing of the school. He refuses to 'pander to her every whim', or allow her to 'act spoiled' or 'play up', even though I've tried to explain that she can't help it that it upsets her if her food isn't cut up the correct way, or you give her the wrong colour cup, or her socks aren't right, or she wants different blankets on her bed because the ones she has are making her cross. No matter how many times I try to explain, he just won't listen. He always says, 'well, she doesn't do that at my house! She doesn't get away with it! You're just letting her away with too much!' I hope this diagnosis confirms what I already suspect, not because I WANT her to be Autistic, like her father says, but because she IS autistic, and I am desperate for her to get all the help she so deserves.

  4. Oh my goodness! I feel like you have just written my story! My son is 11 and threatening to kill himself before anyone believed me. He was finally diagnosed a few months ago. I too was told he makes eye contact, he seems sociable, he's just sensitive - take a parenting course.... I totally doubted myself and began to think it really was me just unable to parent my child. He became so anxious and suicidal that he hasn't been able to attend school much this year. I've had a passion that encouraged me to set up a local charity 4 years ago. I have just handed that over to someone else to allow me to full time home school next year and help our boy get back on track with life, and start to enjoy living and learning again. We had to change GP before we had one that believed me. I can't help but feel if we'd been believed when my boy was 18m old, or when he was assessed by CAFMHS when he was 6 years old (he was "just sensitive" apparently), then his anxiety would not have built to the point where he regularly wanted to die.

    1. Hi Denise, gosh what a time you have had of it, your poor boy .I hope things are settling down for you now and glad you found my blog

    2. Hi Denise, gosh what a time you have had of it, your poor boy .I hope things are settling down for you now and glad you found my blog