Saturday, October 3, 2015

Autism Educational Series: Getting a Diagnosis—"A Slice of Autism"

Mrs. M, from the UK, is a mum of three kids, one of whom is on the autism spectrum. She is a blogger and full-time carer for her son. She also founded a Facebook page that offers a judgment-free place for parents and professionals to discuss all aspects of autism; no question is ever too silly! She has a particular interest in sensory therapies and holistic approaches, and she likes to share her story, “warts and all.” Find her at A Slice of Autism.

One Line on a Piece of Paper
So back to reality with a bang. This post is the one, I think, that is probably going to take the most courage to share. But I reckon I need to get it all out there, as its 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 (medical doctor) 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 its 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 drastically increased (he is now nearly 11). His capacity to cope and mask his difficulties got harder and harder for him to manage, and he would literally explode at home after a day at school, or a football match, or going to a friend's 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 thrown my way on a regular basis when he was younger. I would walk in the door and he would lash out, swear, and 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, 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 felt like a punching bag because he didn't feel safe enough anywhere else to be himself, other than when he was with me. I was confused, and drained.

I was also struggling to hold down a full-time and demanding job that 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 for 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 wasn't his fault.

During this 5-year period, it was suggested to me that I needed the support of social services, family support workers, CAFS (an assessment team for the child), 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 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!)

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's not you, Mrs. M,  your son's not naughty...he has autism...that's what I needed!

Then I knew could have gone on with the job of fighting to get him the right help and access to services. I knew in my heart that when he got 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 needed to be...I knew that 5 years ago!

But instead, what happened was I became ill and exhausted, our marriage became strained, I became paranoid, and I defended my son's every action because I felt like I had to stick up for him...I knew it wasn't his fault. My daughters needed counselling and they have struggled to accept his behaviour. And I have had to focus so much of my attention on him at times. We forced him into situations at the advice of others despite it going against our better judgment, and it always ended disastrously for all involved. But most of all we have been prodded and poked as a 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.

I felt so overwhelmed and could have given up quite easily on many occasions. I remember phoning Camhs (Children's and Adolescent Mental Health Services) in tears one day asking for them to see him and help me, and their response was to tell me to turn up at a children's centre in tears, and that would kickstart 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 too proud to do that. And why should I?! It was the system that was letting us down.

But it's 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!

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 then 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. 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?

His sisters are settling in their own schools; they still struggle with him on occasion, 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 (similar to an IEP/504 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 I am happy; it's as simple as that.

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 High Functioning Autism

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