A letter to the parents of a child with no diagnosis

Dear parents of a child with no diagnosis,

I want you to know that I see you.

I want you to know that I feel your pain.

I want you to know that you don't need to do this on your own.

I want you to know that no matter how alone you may feel right now, there will be better days on the horizon.

I want you know that I understand how it feels inside when passers-by, or even worse your own family, judge your parenting by criticising your child. Or brazenly stare as your child has a meltdown in the supermarket. You want the ground to swallow you up and make it all go away.

You want to scoop your child up and hide them from the world.

People can be so cruel. It hurts so much. A raw deep emotion that only someone who has faced those stares can understand.

I also want you to know, that I know how it feels inside to be on the receiving end of your child’s challenges.

You feel every emotion with them, you are in the firing line and sometimes get hurt physically. I want you know that they don’t mean to hurt you. It will get better, and it won’t always be like this.

I want you know that I understand those strange emotions we feel as parents when we are hurt by our own child. We are their safe place, the person they can be themselves with… and that can take its toll.

So, if you are reading this today and recognise anything I am saying, then please…look after yourself too. Because living in a high state of alert and constant stress can make you very poorly.

Trust me I know.

Please believe me when I say that it’s not a sign of weakness to ask for help.

It’s not a sign of weakness to feel overwhelmed with it all.

It’s not bad parenting to battle with your own mental health issues when you’re trying to put on a brave face for the world to see.

The uncertainty of the situation you are in while you are waiting for answers in incredibly stressful. It consumes your every waking moment and haunts your sleep most nights.

I want you know that although the wait for answers may be long, those meetings at school may be strained and the support you receive as a family may be non-existent…that I see you, and I am with you everystep of the way.

I want you to know that on those days when you pick your child up from school and there has been another issue, or when that parent in the playground throws accusations your child’s way without realising how difficult simply getting to school is for your child... well I want you to know that I am here.

Me and a whole army full of parents up and down the country that know how it feels to be stood where you are right now…. Scared. Alone. Overwhelmed. Isolated.  

I want you to know that we are right by your side.

Don’t be afraid to ask for more support at school. Put support strategies in place now. It will do no harm to your child at all…diagnosis or not.

You know your child best so have more faith in yourself. Your child may not yet have that elusive piece of paper but don’t let that stop you doing what you need to do. Timetables, visuals, social stories, sensory diets… whatever works.

No matter what people may think or your family might say. Put any support you can in place now as early intervention is key. We don’t have time on our side like the government seems to think we do. I waited 5 years for my son to receive his diagnosis. Its not good enough.

So, don’t wait.

Be proactive.

Piss people off, don’t worry about upsetting people, become a pain in the rear, be your child’s voice and knock on doors until you get the help your child deserves.

I also want you to know that eventually, when you have that piece of paper in your hand, the one with your child’s formal diagnosis on it for all to see, its not going to solve all the problems and suddenly make everything all better. This is your life now and that can take some adjusting to.

I want you to be prepared for the wave of emotions that will hit you when the day finally comes. You may feel a mixture of relief, anger, sadness and some people even feel grief.

You may feel relief that it wasn’t all in your head, that is not your bad parenting and relief that now you may be able to get the support you need.

You may feel anger, asking yourself why my child? Where is the fairness in that? You may even question your own faith. I know I did.

You may feel sadness and grief. Grief for the life you thought you would have. Mourning the loss of all those things that you imagined you and your child would do together.

No one has the right to tell you how you should feel, or how you should react to getting that diagnosis for your child. It is a deeply personal experience and it is also a lot to get your head around, I’m not going to lie to you.

When your child gets a diagnosis, it can hit you like a tonne of bricks.

But that doesn’t mean that you love your child any less, or want to change them.

Please give yourself time… be kind to yourselves and let all those feelings wash over you, do what you need to do to get through those first hazy days of diagnosis.

Then will come acceptance.

You will still have battles. Face judgements and have bad days.

But there will also be lots of good days. You will want the world to see all the amazing qualities your child has to offer.

Your child will have the protection that a diagnosis provides to help you fight for access to services and get the right support at school.

You will have answers, and with that comes confidence in your own abilities.

And then life will settle into a new rhythm. You will be on a different path and soon that its OK. Its not what you expected, but this new road has some amazing views along the way and has a lot to offer.

I want you to know that no matter how long you have to wait for answers, no matter how hard things are for you all now. There is light at the end of the tunnel. And you never have to do this alone.

And your child may not be able to thank you for everything you do for them… but I can.

Thank you for being an amazing parent. Thank you for never giving up and letting your child know that despite their differences they are never less!

Thank you for your unconditional love and patience. And thank you for putting your own life on hold in order to support your child.

I see you, and I am thankful for everything you do.

Our kids are amazing…. and so are you!

With love,

Mrs M x

The long road to diagnosis

Diagnosis

I vividly remember all those years ago when I first became a mother in my early twenties, nervously holding this new little life in my arms. So vulnerable she was that I became completely overawed at how dependent on me she was. I was meant to have all the answers. I was meant to know what her cries meant, what to do when she wouldn’t settle and how to relieve her colic. I was overwhelmed with it all in those early days settling in at home.

However there was one thing I knew for certain back then; that I loved my little baby more than life itself, and so instinctively I learnt to know what she needed. I needed no guidebook or lessons to tell me what to do, it just happened naturally.

Then in my late twenties, we were blessed with another daughter and a son. Life had become full, crazy and yes at times a little chaotic - but we had such hope and dreams for the future.

My girls were happy carefree little things, full of laughter and smiles. However my little man worried me. Because even though he was hitting most of his developmental milestones he was hard work. Many aspects of his behaviour didn’t fit any checklists or tick boxes for kids of his age. He was a handful as a toddler and ran rings around me at times I have to say. And initially I dismissed my worries, thinking he would soon grow out of it.

However I was soon to realise that it was far more than just your typical boisterous behaviour that was testing my skills as a young mum.  I didn’t know it all those years ago, but I was at the start of a new phase of motherhood. One that would turn our whole family life upside down, and my role as a mum would take a whole new road completely.

So fast forward to now - Here I am, older and wiser. I’m now in my mid (to late)-thirties and my son was diagnosed with Autism last year at the age of 10. After all those years.

Altogether it took almost 5 years on the waiting list for him to be assessed.

So I think that’s what makes my journey, and many other mums like me up and down the country kind of unique really. Because I can’t think of any other condition where parents have to wait so long to get the help and answers they need. And I certainly found that my relationship with not only myself, but with my son and my family was pushed to the limit because of it. Because I feel like my early thirties flew past in a blur of stress and uncertainty. I got lost somewhere in between there and now. Let me explain-

I doubted myself constantly because I knew deep down that my son had so many hidden challenges and for years I felt like no one believed me. I knew it was more than the terrible twos, threes or fours. And it certainly wasn’t middle child syndrome. I could see that my son was increasingly struggling with so many aspects of his life, but he wasn’t able to express what was happening to him inside. So instead he would play up, resist, fight or become upset at the smallest of things.

And eventually I began to feel like every instinct I was having as his mum was wrong because I felt like I couldn’t help him and people were judging me as a bad parent that couldn’t control her kid. So many thoughts were swirling around my mind-

Why didn’t people believe me?

Why did they think he was just naughty?

Why could he be good all day at school then the minute I walk in the room he would lash out?

Was it me, were they right, and was I too soft on him… Is that what the problem was?

And this went on year after year after year. I became exhausted, confused and tired. There are even occasions I can remember when I had been on the receiving end of one of his meltdowns after school, and I would keep it to myself because I felt so alone and just couldn’t face the criticism from people who thought he was just naughty. I felt ignored as all I ever seemed to do was make excuses for him, desperately trying to make people see what I saw.

Because you see I knew.

I just knew that when the day came for him to be assessed that everyone else would finally see what I had known all along. That my son was Autistic.

And then when that day did finally arrive I felt such a mixture of emotions that I just didn’t know what to think. I was relieved on the one hand but deeply saddened on the other as there was so much finality in those words – Autism.  All I could think about was that it’s a lifelong condition, and the future seemed so uncertain for him at that point.

But in the months that followed his diagnosis I came to see that there was truly no need for me to be saddened by the label that he got that day. Because it hasn’t changed him, rather its changed how others think of him and that the key to his happiness.

Yes he has a label now, but it’s the right label. Not the ‘naughty’ label, or the ‘spoilt child’ label. And it has freed me of the shackles I felt for years too. I felt like I walked around with a ‘bad parent’ neon sign flashing above my head half the time as people stared at us in the supermarket. Or I was the ‘pushy parent’ when he refused to go to school and I had to fight for accommodations to be made for him.

But you see now the world can understand my son due to his ‘label’ of being Autistic, he is so much happier as a result. It opened doors that allowed us to get the right support for him. Thanks to his diagnosis now other people can now see how much he has to offer the world too. And that is why a diagnosis is so important for children like my son. Because otherwise he would have continued being misunderstood and labelled in all the wrong ways.

So the bottom line is that the long wait not only affected my son, but it affected me deeply, and there is no easy answer I’m afraid to say, it sucks! The waiting lists in the UK are appallingly long and I wish I could tell you otherwise but I can’t.

But mums what I can tell you is this - please believe me when I say that there is light at the end of the tunnel. I learnt that I had to believe in myself, and you will learn that too I promise! You are a good mum and your gut instincts are always right, just like we instinctively know what to do with our babies, nothing has changed just because they have grown up a bit. And please know that your opinions as a mum are 100% valid and worthy of being heard, no matter what labels your child has been given or how long you are waiting for answers.

And if there are any professionals reading this, please try and see beyond the labels, both my child’s and mine as a mum.

That mum may be labelled as a pushy parent, or come across as defensive in meetings. But it’s probably because inside she’s feel intimidated by you all sat at the table like you’re ready to interview her.  She may have had years fighting a system that struggles to view things from her child’s point of view. She may have sat at meeting after meeting having to listen to all the things her child can’t do when she knows how much he is capable of if they could only see it. Maybe she’s worn down by judgements and feeling like her opinion isn’t valid. And maybe all she actually needs is for someone to say to her that they don’t have a magic wand to make it all better, but that they hold value in what she has to say and  that they are really listening to her.

Because after all she is just a mother. A mother doing her best. A mother who held her baby in her arms all those years ago with such hope and dreams for the future. And no matter what labels her child is given she loves him all the more, more than life itself.

This blog has previously been published as a guest post on Kathy Brodie.com

Autism acceptance month A-Z ( April 2016)

A SLICE OF AUTISM: One line on a piece of paper

A SLICE OF AUTISM: 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 al...

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

Mrs M to room number 4 please....

 

So where to begin I have been pondering......... and I reckon the obvious place for me to start is how I found myself on this bumpy road. Its easy to forget how far we have come I suppose, as I  remember feeling an overwhelming sense that I was doing something wrong when my son hit the toddler stage with his constant tantrums and hyperactivity. I can remember like it was yesterday; the day the poor health visitor sat on my sofa while I wailed at her about being such a rubbish  mum and what was wrong with my child..... what was I doing wrong... why isn't he more like his sisters?! Poor woman must have wondered what the heck to say to me, as I had co -run a parenting course with her several years before as the manager of a nursery she was involved with... I should know what the flipping heck was happening with my own child ... but I didn't have the answers and neither did she I don't think, so she suggested maybe I was depressed!? And I think she was right.

But I plodded on year after year, still exhausted with it all and really not quite knowing why my child was hitting me. He struggled with making friends and anything new just threw him. Time came for him to attend Primary school and he cried and cried every day for the whole year when I left him. It was heart-breaking leaving him so upset each day, I felt such guilt , but then be honest I was glad of the break of being at work and this took my mind off it all .. and so I felt guilt about that too. People around me said he was fine he was just a shy kid,  he would grow out of it,  I should be firmer with him, I should leave him more often, and not pander to him.......I should try stickers and reward charts, trust me I was way beyond stickers at this point!!!

Truth is I tried every bloody parenting strategy out there known to man , you name it I tried it. But I still couldn't quite grasp what was going on,  I just knew it wasn't my imagination, or our bad parenting,  and he wasn't just a naughty demanding child, my gut told me it was more than that! So I became his defender. I was so sensitive to any comment or judgement passed,  as I didn't want him to be labelled as 'that' child. I felt I was the only me who really got him and I exhausted myself in the process I think.

So that led me to booking an appointment with my doctor when he was about five and a half.  I booked the appointment in  a moment of desperation one day, and then though what on earth have I done!? I mean how does that conversation go?...... no one teaches you how to sit and tell your GP you think you need help with your child,  as that would mean actually admitting I was struggling and I couldn't fix it all like the super mum I was trying to be, holding it all together for everyone because thats what mums do don't they?

But I was having an internal battle and went along, and sat there in the reception, feeling sick to the pit of my stomach. I looked around at all the ill people in the room coughing and spluttering, and looked at my son sat playing on his DS,  and I convinced myself we didn't need help, I could cope, I would go in there and make up that he had a cold..... Yeah that's what I would do! Then I glanced up to see my little sister striding into the surgery looking me square in the eyes with that knowing look. She plonked herself down next to me and said " there's no backing out now lady"  I had no choice I knew I had to do it. "Mrs M to Room 4"came over the loud speaker , and  so took a deep breath and in I went while my sister stayed outside the room with him happily oblivious to what was going on around him.

Well I have no idea what on earth I said to her  that day my memory is blank, to be honest, I just remember being a jibbering wreck full of snot and puffy eyes, struggling to catch my breath and well it all bloody came out!!

She didn't laugh, or point the finger at our parenting, she simply sat and listened calmly and patiently, smiling sympathetically and then said to me....... "Well Mrs M things do sound a bit tricky for you all, lets see what we can do to help!". ....... HELP!.......That's where it all started. It needed me to actually admit I needed help, and that was the scariest thing I have ever had to do , its something I still struggle with to this day to be honest but I know that in order to be the best mum I can be for my kids I need help every now and again, we all do x