Autism and Anxiety – An Awful Combination

Another school morning and another anxiety filled hour for my autistic daughter. Her life is filled with rituals, fears, worries and restrictions and nothing is getting easier. She has autism with generalised anxiety and the combination is awful.

It all starts with how she wakes. (Well actually it starts even before then because she often has nightmares.) She immediately has to check that everything is how she left it before she fell asleep. She has to have certain comforts in bed and they are all lined up just so. If anything has moved while she slept her anxiety becomes extreme.

“Mum, someone came into my room again last night!”

“Mum, I can find ….I need you NOW!”

Things must never change. Nothing can ever be moved. That’s her rigidity due to autism but then the anxiety kicks in when something changes and her whole world spins out of control before she’s even out of bed.

Anxiety, autism and sensory issues then affect what she will eat (usually the batter from chicken nuggets for breakfast because she has AFID (avoidance restrictive food intake disorder) and will only touch a select few foods.) Clothes have the same problem and I am down to just three pairs of school trousers she will accept and two polo shirts. I have no idea what I would do if my washing machine ever broke! Socks cause huge anxiety but going without them causes even greater anxiety again. She can’t cope with school shoes so she has trainers.

Then she has her rituals every morning. Set things must be fully completed before she can leave even when time is short. Cries of ‘mum have I got time for…’ can’t actually be answered with a no or she collapses in a heap unable to function. Her mind has so many open boxes that must be closed before she can step out the door. Leaving any open means her day will be preoccupied by one unclosed box and she can’t move on. She can’t ‘just ignore it’ or ‘forget it for now’ or ‘do that later’ because autism and anxiety don’t allow for that.

She has to please everyone. Homework must be done to the letter. Missing a night isn’t an option because anxiety tells her her teacher will somehow know and reprimand her. Her own conscience condemn her because she has to be perfect.

Even before she gets into school she must be first or second in her line because otherwise in her mind she is late. Anxiety makes her thoughts irrational but autism prevents her seeing it that way. Autism then distorts how she perceives the world and those around her then anxiety tells her she’s useless, foreign and not wanted. It becomes a vicious circle controlling everything.

She can’t break rules for fear of being shouted at. Fire drills sent her anxiety spinning because she has to go outside in indoor shoes and without a coat, two rules that she can’t break due to her anxiety and autism. Being outside at the ‘wrong time’ sends her stomach in knots for weeks afterwards. No amount of social stories or reassures help.

Every day is exhausting. Anxiety exhausts her as she lives on her nerves never feels adequate or good enough or perfect enough. Then autism tells her this will never change and that everyone looking at her is doing so because she’s done something wrong.

Autism affects her ability to communicate then anxiety prevents her overcoming this.

Autism affects how she understands social situations then anxiety makes her feel the world is better without her.

Autism means she must obey the rules then anxiety makes her fear for the consequences of being unable to do so through no fault of her own.

Autism makes her vulnerable then anxiety means there’s nothing I can do to change that.

Autism Is a lifelong communication disorder affecting how she communicates, thinks, understands language and interacts with others.

Anxiety is worrying, unease and fear about the unknown.

Together they are crucifying my daughter and so many others.

There is no cure but that doesn’t mean I give up trying to help her.

My daughter is beautiful, kind, caring, compassionate and smart. If only the awful combination of autism and anxiety left her alone others could see her potential and love even more.

Just imperfect parents raising imperfect children

I have a confession to make: I am not a perfect mum.image
I just needed to get that ‘out there’ without feeling a failure or weak. The truth is none of us are ‘perfect’ parents and none of our children are ‘perfect’ either. We are all muddling through as best we can. It’s just some of us are under more scrutiny than others.Most families get to raise their children with minimum involvement from others outside of their own family. I don’t have that luxury. And while I am grateful for everyone who supports us it also comes with huge pressure to ‘perform’ and ‘jump through hoops’ at times.
I left another multi-agency meeting this week in tears. While no-one actually came out with the line of ‘it’s the parent’s fault’, there is always a feeling of inadequacy that comes with having children who have ‘extra needs’. Sometimes it can feel like your best is just never enough.
So I just need to get this out:
I am not perfect and neither are my children.

My children throw tantrums often for the craziest of reasons, they have more screen time than they should, sometimes we are still in pyjamas at lunch time at the weekend. I sometimes let them sit right in front of the TV even though I know they shouldn’t, I help them get dressed some mornings for school just because it is quicker and easier, and I have even thought about doing homework for them because I just can’t face another battle (I said thought as not quite mastered the art of writing and spelling like a six year old).
My children have off days.
And so do I.
Just because my children have special needs does not make my family any different to any other. In fact we are probably more exhausted, more chaotic and busier than many other families.
We live in a glass house at times where teachers, social workers and therapists feel they can tell us where we are going wrong and what we have to do to help our children. Sometimes it is helpful; sometimes it isn’t. I don’t have all the answers, but neither does anyone else.
But we are doing our best.
It is easy for others to judge and criticise and ‘guide’. And there are times when someone outside of the situation can see things we just can’t which is helpful and supportive. But on a daily basis we live this.
I know I get it wrong at times. And I know other times I get it just right. Sometimes my children master something new, sometimes they don’t.
Special needs parents are no different to other parents really. But because our children ‘struggle’ in areas it puts pressure on us to ‘fix’ them and support them when all we really are is imperfect parents raising imperfect children.
When we get it ‘wrong’, be kind. When we get it ‘right’, encourage. We are all raising unique, wonderful, individual children with different qualities and skills. And we are all doing it in the best way we can.
My children’s struggles may be obvious but everyone of us struggle, wether child or parent.
Be kind, be supportive, and don’t judge.
Every single one of us are just imperfect parents raising imperfect children at the end of the day.

Would you swap your hand?

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Some years ago I was giving a friend a lift home in my car when she shared some words of wisdom, quite unplanned. She was going through some difficult times but reflected that if life was like a game of cards and we were able to fully see the cards everyone else had in their hands we would always choose to keep our own hand we had been dealt with.

There have been times I have felt unsure about that thought, feeling hard done by or feeling I have been given a raw deal in life and the idea of swapping with someone else, whose hand seems so much easier, appealed greatly. We all have times when the grass always looks greener on the other side. We look at the smile on others faces and assume the hand they have is easy and they are going to win. We read status after status on social media and assume everyone has a wonderful life because this is how they choose to paint it. Many have mastered their poker face. Years of playing the game has convinced them there is advantages to hiding their pain and smiling through difficult times. But what if you had the ability to see the full hand they had been dealt with? The chances are you would look at your own hand with a new perspective and appreciation.

There have been times I have wanted to lay my hand down and quit. As my children received diagnosis after diagnosis, my home got repossessed, appointments mounted up and nights were never-ending, quitting seemed so much easier than playing on. My ‘losing’ appearing so much worse by seeing others ‘winning’. But the fact is while you still have cards in your hand you have everything to play for. For a season I just needed to concentrate on the hands I had: the beautiful children I got to kiss each night, the roof above my head, the food on my table. A few special cards can mean so much more than a pile of insignificant ones. Used strategically and carefully any hand can be amazing for the right player.

There have been times my hand has seemed huge. I have felt blessed by friends around me, my marriage has seemed strong and my cupboards have overflowed with abundance . Many have looked at me with respect or jealousy thinking I have it altogether. They have wanted to swap hands with me thinking life must be easy for me. They have looked at things from the surface seeing only what looks like blessings. They see a new car in my drive, they see children’s toys in my garden and they see my children with expensive technology. It all looks fantastic. They think my life must be effortless. They perhaps don’t know about the times I looked on them the same way with those similar feelings. Because they are not able to see my full hand they may not know that the car is leased through a scheme for the disabled because of my child’s complex medical and developmental needs. They may not know that my son carries an iPad around with him as it is his only form of communication because he is totally non-verbal.They wonder how I can afford to stay at home instead of ‘working’ without realising my job as a carer may be unseen but it is extremely intense both day and night.

Other times it can all seem quite equal. The dealer deals the same amount of cards to everyone and the game is anyone’s call. But as each player sees the hand they have been given and does their best to turn it into a winning hand it is important to always look at your own hand as important, beautiful and worthy. Even the humble ‘2’ can become a winner to the right player. It is all about how it is played that counts.

Wether you are playing the hand of a single parent, raising children with disabilities, wrestling with health issues or struggling with huge responsibilities of caring or debt, always remember that if you had the ability to fully see the hand that others are carrying you would realise that, in fact, the hand you have is the very one you can handle. You have that hand for a reason.

I don’t know your hand in life. I don’t know your struggles or you talents and gifts. But I have faith in every one of you. I have faith you can take that hand you have and win the game. You can become a gifted player in life no matter what hand you have been dealt. Just keep playing.

Do you fancy swapping your hand? Just remember everyone is fighting battles we do not know. The other hands may not be all they seem. And if you had the ability to see everyone’s hands the chances are you would always take your own back. So keep your hand and use it to win. However long you get to play, play it well.
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How did you meet me?

Did you meet me many years ago, a child innocent and free, more interested in dolls and card games than school, influenced by the beliefs of my parents more than the media, eating food that others made me without thinking of the cost or how it was cooked? Had you met me then you would have known a very different person to who I am now. The innocence of childhood is long gone now.

IMG_1323Did you meet me in high school, a teenager preoccupied with my puppy fat and how to avoid being bullied? When it felt like the weight of the world was on my shoulders as I struggled with French homework that made no sense and tried to remember the periodic table of elements. A time when friendship was someone to stand beside at break time, when my view of life became tainted by smokers in the school toilets and the pressure of exams made me cry. The confusion of my teenage years is long gone.

Did you meet me at university, a naive student who had yet to taste alcohol or party right through the night? The novelty of living alone soon forgotten when the loneliness and homesickness set in every night. When a determination first set in to achieve and my views of child development were rose tinted and way more fantasy than reality. When I let my world fall around me as the first person to ever call me a failure spoke into my life. Had you known me then you would have met an insecure and way too innocent student ill prepared for the reality of a full time career in teaching.

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 Did you meet me when I first fell in love, a believer in happy ever after, dreamer of happy families? When I consumed myself with wedding planning and being with my lover more than anything else because life suddenly seemed amazing, and bright and exciting again after the failure of university. Did you perhaps watch me walking down that aisle full of hope and love and a belief that together with my new husband life would be everything we wanted and more? It takes so much work to keep that spark, excitement and fire going. But the depth of love has not gone cold. I pray it never will.

Did you know me through those wilderness years of bitter disappointment, early pregnancy loss and grief of infertility, when darkness could overshadow me so suddenly I felt like I was being devoured? You may have met someone so negative at times, so consumed with their own pain it was difficult to see the hurt in others, someone so emotional and yet appearing cold in order to protect my heart from pain. Someone trained in child care yet avoiding anywhere children could be found. Someone who worked four and five jobs just to keep busy so as not to face the uncertainty of life. The pain of those years and the volume of tears may have subsided but the lessons learnt run deep inside my heart.

Did you meet me during the exhilaration and thrill of the birth of my babies when I wanted to scream my story out to the entire world and explode from happiness? Did you send me a card or buy a gift for my children? Or at some point on my journey shared with me as you bore children at the same time, experienced teething in your children as I did in mine or liked my children’s photos on social media? There is nothing more bonding for woman than sharing experiences of their children. I may have bored you with stories of their funny faces, silly antics and baby smiles. The beauty of those years will live long in my mind.

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Did you meet me through the agony and pain of realising my children where different, of never ending appointments and devastating diagnosis? Have you journeyed with me through autism, neurofibromatosis, vision impairment, faith, sleepless nights, developmental diagnosis and fighting the system? A mother so emotional yet determined, so overwhelmed yet so focused, needing to learn but struggling to cope. Have I poured out my heart to you in person or online craving that knowledge that someone somewhere cares and has been here before to show me the way? Have you seen me tell someone else it will ‘be OK’ and you wondered where or how I can find that confidence from?

My heart has been changed now. Compassion has taken over. Where there was once judgement there is now empathy for others. Where there was selfishness there is love. I am not the child, teenager, student, wife, or mother I used to be.

Life has a way of changing people. Disability has a way of changing people. Children have a way of changing people. Faith has a way of changing people.

Everyone’s journey is different. Forgive me if in the past I judged you, acted selfishly or was aloof towards you.

How did you meet me? You met me on my journey and my journey isn’t over yet. Bear with me as I keep on walking.

It has been lovely to walk with you for some of the way.

Thank you!

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They can’t just “get over it”

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My son has Neurofibromatosis type 1: he can’t just ‘get over it’. He has it for life. The implications of it are unknown.
My daughter has autism: she can’t just ‘get over it’. She has it for life. How it will affect her in the future is as yet unknown.
My son is non verbal: he can’t just ‘get over it’. He may be non verbal for the rest of his life. He may not be. We just don’t know.
He also has autism, visual impairment and learning difficulties. You don’t just ‘get over’ any of those either.
My children are both incontinent. Well, guess what, they won’t just ‘get over’ that overnight either!

It is hard to understand. I have hope because I need to have hope. But there is no magical cure. The future is uncertain and I have to live with that.

But one thing I do know is that my children are doing everything they can to make the best of their lives. So when they get upset or struggle or become overwhelmed it isn’t because they have given in, or because they are spoiled or want their own way, or because they want an easy life. It is because they have disabilities; disabilities that may be unseen but are very real. You may look at them and think they are fine. But they are not.

The world is confusing and loud and overwhelming for them. They rely on support networks that others don’t need as much. They see the world in black and white. They take things literally. They overgeneralise. They look at things from a completely different perspective. They have sensory overwhelmed from places that cause others no issues. They have anxiety to a scale many will never be able to imagine. They struggle with simple everyday tasks that we take for granted. Everything is an effort, a big deal, a massive achievement.

My daughter lost her comfort blanket and she was distraught. It was impossible for her to ‘get over it’. She had had the same cloth since she was a new born baby. No other cloth was good enough. Nothing else smelled, felt, looked or could offer her comfort like that cloth. Maybe all children have to grow up at some point. Life has disappointments. Special things get lost. But a child with autism can not ‘get over’ anything just like that. Her whole world turned upside down. Her sense of security and comfort disappeared. Her brain had to process that her cloth was no longer available. The depth of sadness this brought was tangible. It was found again but her faith and security in life remains uneasy. Something of paramount importance to her was lost and now she worries that something like that may one day happen again. That is a huge amount of stress for any 5 year old to carry around all day. She will never just ‘get over’ something like that. Her world changed. And I can never fix that for her.

My daughter is coming home from school in tears. She has a long list of things causing her distress. She isn’t just wanting her own way or demanding she is someone special. She can’t cope with noise or crowds or new unfamiliar routines. She is struggling to keep up with her peers and in the midst of sensory overwhelming in school she is finding listening to a teachers voice a real struggle. This is not made up stories. This is sensory processing difficulties. This is autism.

I took her in the front door of the school this week to avoid the playground. Another parent spoke to me when I came out. In her opinion I am spoiling my daughter. I am babying her. She just needs it get on with it like all the other children do. She just needs to ‘get over it’.

If only….

If only my kids could ‘just get over it’…

They may learn to cope better as they grow. But they will always have nf1, or autism, vision impairment and learning difficulties. The same way others have health conditions, mental health issues, struggle with bereavement or loneliness. Be patient with people. Have compassion. There are very few things in life people ‘just get over’. Most people are trying hard. I know my children are.

“Be completely humble and gentle; be patient, bearing with one another in love” Eph 4:2
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The battles and the breakthroughs

I thank God for the mountains
and I thank God for the valleys
I thank him for the storms he brought me through
For if I’d never had a problem
I wouldn’t know that God could solve them
I wouldn’t know what faith in God could do
Andre Crouch song ‘Through it all’

Can I really thank God when I see my 5 year old son self harming? Seeing him bite his own hand as easily as he bites into a piece of fruit? Seeing his tears of sadness at the pain but yet having no understanding that he himself is causing it. Can I thank God for the intensity of crying and upset he displays every time I start to cook a meal because he has no concept of waiting or cooking? Or seeing the bruises and the seizures and the scars from his constant falls? Can I thank God as I watch his frustration at being unable to communicate or understand?

self harm    bites      movie31     holding isaac

There is no easy answers sometimes. But I know that without these moments of struggle, of battle in our lives, we really don’t appreciate the breakthroughs when they come. If your child has never self harmed you don’t thank God that they went four hours without biting themselves. If your child has fluent speech you take new words for granted. Because that isn’t a breakthrough for you. But for me these would be a miracles.

So I pray. And hold my son. And believe for breakthrough even when it seems impossible. I can’t give up hope. I can’t stop believing.

And to keep my focus I look for moments of peace. Moments of progress in both children that keep that hope and faith alive. Treasured moments in time that make me think about the future and the fact that there will always be tomorrow no matter how hard today seems.

Moments just like this:

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When Naomi had a visit from the Head Teacher of our local school to gift her a school bag in preparation for her starting in August. Oh be still my beating heart. Because this baby is growing up. Unlike her twin brother she has some understanding of what lies ahead. And we can ‘play’ school, read books about it, and even visit. To see her excitement rekindles that faith again. This little one does not think for a minute how her very existence is a miracle. She does not dwell on the support networks that will need to be in place to ensure she is fully supported in school. She sees a new bag, new clothes, new adventures. And I need some of that innocent faith of hers.

As I travel with these two little miracles there will always be battles, and bumps and moments when things look impossible. But their very existence was birthed on the belief in the God of the impossible. And so I thank God for every valley we travel through because it is in the valleys my faith is grown. And having been through many valleys I can testify that God is a God of miracles. and faith in God will carry us through…

This week I made my first ever film. In yet another week of heavy meetings, intense moments of holding my hurting son, yet beautiful moments of seeing excitement twinkle in the eyes of my daughter, I truly thank God for every battle and every breakthrough and for bringing me to this moment in time:
This is how we got to where we are now:

http://m.youtube.com/watch?v=aEGBjOAEIYo

Please continue to travel with us in this journey and experience the mountains and valleys we have yet to come.
Faithmummy x

A Different Life

Sometimes life can carry on, every day pretty much the same routine with the same people around and the same places to go to. And then other times something major changes and your life can seem out of control, up in the air, just so unrecognisable from before. Events such as a baby being born, getting married, starting a new job, moving to a new country, or a relationship ending, death in the family or sudden change in career. How we all cope with these changes defines who we are and makes us stronger. We need to adapt to a different life, a different way of doing things. And that all takes time, patience and support.

We had one of those changes last week when one of the children starting full time education for the first time. My twins became seperated for the longest they have ever been and everything changed. And it feels like a different life.

For young Isaac it really is a different life. From the moment he was born he has always had mum, dad, and twin sister around. We have been his stability, his strength, his unmoving support when any change happened around him or anything occurred he wasn’t sure of. Like so many children his age he is incredible close to his sibling and parents and reliant on them for so much. But unlike other children his age, he is far more dependant, far more needy and much less independant. So to suddenly send him in a taxi to school without that life line of support and communication for six hours, 5 days a week is major. Such a different life for him. And such a different life for the rest of us too. He needs time, patience and support to help him adapt to that different life. We all do.

But he is coping remarkable well considering his life has changed so much. His diary on his first day at school read: ‘Isaac had a great first day at school. Very happy and laughing a lot of the day.’ He can’t tell us about his time away so that diary is a life line. We can only go by his behaviour, his body langauage and his reaction to things at home to judge how things are going in that different place where life is so so different and strange for him. At home he is exhausted, clingy and needy. And after just three days at school he has already caught an upper respiratory infection. Different life equals different germs.

But he loves his school jumper! In fact he loves those jumpers so much we had to hide them at the weekend. But he searched his wardrobe and pulled out every item until he found a red jumper! He doesn’t recognise the school logo so this was an old jumper from a previous nursery but it was red! And it was the only thing he was willing to wear on saturday.

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If this helps him cope and adapt to his different life then so be it. Good job he quite suits red.

Naomi now has a different life too. She has to travel to nursery without her brother sitting beside her. She has a new key worker at nursery and new children in her group. And now when she come home from nursery she has almost 4 hours on her own with mum and dad. And no longer any afternoon naps after nursery too. For the first day she got so upset when we didn’t make any lunch for Isaac. It was so hard for her to learn she could set up her train set and her brother would not come and take it apart and chew the track. She was so clingy and tearful. And asked after Isaac all the time. So emotionally exhausting for her to be apart from him for so long. She only agreed to watch her favourite dvd on agreement that we would put Peppa Pig on for her brother as soon as he came home. Sweet, but also very revealing.

This girl has had to live a very different life to other 4 year olds. She has had to learn to put her brothers needs before her own all too often. She has trained herself to cope with her games being broken and pulled apart and chewed by her twin brother and not get upset. She has leant how to go to sleep when he is still making so much noise in the room next door. She has adapted to his ways, grown to understand his attemps at communication and knows just when it is best to keep out of his way. But now she has a different life. Now she can really be a four year old girl for the first time. Now her needs can come first for once.

So for the first time ever she got to visit a museum this week. She wasn’t sure what to make of the statue:

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or of mum popping out of a makeshift cave:

Imagebut she loved writing on the blackboard:

Imagebuilding a 3D palace:

Imagebut most of all doing a magnetic jigsaw:

Imageshe still asked about her brother lots. And when we got in the car to come home she did tell us that it would not be a nice place for Isaac because there wasn’t enought straight lines!

The first thing she wants to know when Isaac gets home is what he has been doing in school. On Friday he spent some time in the schools multi-sensory room and in thier soft play room. This is what she thinks school will be like. Oh boy, she is in for such a different life this time next year when she starts the local mainstream school! Isaac will be going horse riding and swimming with his school too. So we will be doing fun things with Naomi at home.

We popped to the local shops with just Naomi one afternoon. It felt so strange just walking in without having a trolley with her brother in. It felt even stranger getting to walk around the ailes without hearing screams and cries and to walk out of those beloved automatic doors that I have spent so much time watching my boy flap and woop in amazement at for the last few years.

A very different life for mum and dad too. Why, we have even managed to enrol ourselves on courses with the national autistic society this week and enjoy a breakfast date together.

Soon this will become everyday life for us. Every day pretty much the same routine, with the same people around and the same places to go to. Until the next change happens and we start a different life again.

Change is hard for everyone. But with time, patience and support we can all adapt to a different life, wether that is without a loved one, a partner you once had, or adapting to a new baby, a new country or starting school.

A different life. But a good life. Because different might have it’s challenges but it also has it’s rewards. I am going to miss our old life. But I am determined to embrace this new, diffferent life too.