I put him to bed some nights and cry

Loving my son is easy, living with him is not.
Some would say he is controlling, a bully, self centred and aggressive. These would all be correct.
He is also frustrated, anxious, stressed and agitated.
No anger course, or therapy or counselling will help him.
He is 8 and can not speak. He is still in nappies. He has no sense of danger. He can scream for hours, smear, attack and demolish all in one day.
Yet he can laugh a deep laugh that is so contagious he makes everyone smile. He can flap and find utter delight in lift doors opening for hours.
He is the apple of my eye and the delight of my heart but some nights I put him to bed and cry. 
I cry for the life he is missing out on: The lack of friends, the inability to read and write, the fact I have no idea when or if he will ever be toilet trained. I cry because he is misunderstood and judged so much. I cry because he can not tell me anything like how he is feeling or what he likes. I cry because he is so vulnerable and that scares me. I cry through exhaustion having to constantly guess what he wants and why he is so upset. I cry through years of sleep deprivation, lack of support and the stress that something as simple as an open door makes him throw himself down the stairs in distress.
I put him to bed and cry because I do not want him to see my tears. I never want him to feel he disappoints me. I never want him to feel rejected or unloved. 
But I need to let the tears out. Pretending this is ok is not helping anyone.
My son has severe autism and it is very hard. My son has neurofibromatosis type 1 and that scares me. My son is vision impaired and that worries me.
His list of diagnosis and difficulties is comprehensive. He requires 24 hour care and relies on me for everything. He will need care all his life and his condition is progressive and unpredictable.
He brings me great joy but caring for him exhausts me.
Loving him is easy, living with him is not.
I love him more than words can say but I put him to bed tonight and cried.

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My heart rejoices but my eyes still cry

I can be happy for you. I know I can. I am a mum too. I understand pride in your child. I get why you want to share because I do too.
You see my heart rejoices with you when you post about your child’s achievements. I click ‘like’ or comment because all children are worthy of celebrating and because I want you to know I care.
Yet sometimes my eyes still cry.
When you post about your oldest starting university. I KNOW without a shadow of doubt what a big moment that is. I know because I made it to university and my parents were so proud of me too. My heart rejoices at how far your child has come and the immense pride this brings you. I also want your son or daughter to know that this is huge for them too. So I am right with you while you celebrate.
Yet sometimes my eyes still cry.
When you post those beautiful and funny videos of your young child singing and dancing I watch them over and over. I can’t get enough of them. The joy and excitement and beauty in your posts and pictures give me such a buzz too. Your little ones brighten my day with their smart clothes, cheeky grins, and silly faces. You make my Monday morning blues disappear with your funny stories and kids selfies.
Yet sometimes my eyes still cry.
I brood over your baby pics. I get so much joy from your wedding photos. And oh that pride and anxiety you feel at your child’s’ first day at school pics; I feel that too when I see your baby so smart and ready for a big adventure. Your holiday pics brighten the rainiest day and I admit I feel a little jealous at your beautiful body and tanned skin. You always remind me that life is for living so I look at your pics and like them. Not because I have to but because I am delighted for you. I really am.
Yet sometimes my eyes still cry.
I don’t want them to but it just happens. I am not really sad and you are not upsetting me but a part of me knows that my life is different.
But I won’t be bitter. Because that does not help me and it robs you of some of your joy and delight if you think you are making me sad.
So please don’t worry about it if you see a tear drop from my eye or I look away for a moment.
I am actually not sad.
I am dreaming.
Dreaming of the day my son may one day dance like your little one. Dreaming of the day I can post a video of him saying ‘mummy’ and making silly faces with me. Dreaming of how happy I would be to post pictures of him if he achieved like your beautiful babies do.
Right now I don’t have that. But one day in my dreams I will.
One day I will post holiday pics of us splashing in a pool together on a sunny day. One day I will post a video of him at Christmas singing jingle bells. He may be a grown up by then but I will celebrate just the same, because achievements are achievements at any age. My timescale and your timescale may be different but I rejoice with you none the less.
Keep sharing your joy. Keep sharing your pride. I need reminded that life is wonderful and joyous and not filled with hospital trips and therapies and struggles. I need to see your baby laughing because I don’t hear laughter as much as I should with my baby.
Thank you for sharing your life and your children and your stories. You bring me joy, and encouragement, and you help me dream on.
I can be happy for you. I know I can. I will not be bitter because I love you and rejoice with you. We journey in this together. Much of my journey is still a dream but that is ok.
Keep me dreaming. Keep me smiling.
Keep my heart rejoicing when my eyes still cry.

Grieving for a child I haven’t lost

As I sat on the bench in a public park the tears came easily. Watching little toddlers peddling trikes and mothers chatting to babies. Seeing pre-school children laughing and chatting as they wheeled around the water on their brightly coloured scooters.

It has been building for a while.

The night before last it was anger and hurt as a friend shared how her 14 month old was defiantly talking back when they were trying to get her to bed. I wanted to scream and say ‘but she understands! But she talks!’ Instead I mourned silently.

The world goes on while I grieve for a child I haven’t lost.

It is a very different pain to others. I know the pain of not having children. I know the pain of losing a yet-to-be-born baby. I know the pain of losing someone very close. I know that feeling of despair and anger and hopelessness. People understand when they know you have loved and lost.

But how do you explain you are grieving a child you have not lost?

I get to read to my son. I get to bathe him and dress him and kiss him. I hear him laugh when I tickle him and get to push him on the swings at the park. He goes to school. He will watch a video sometimes. And yet he is lost.

I have yet to hear his voice. I grieve for the conversations we will never have. I grieve the fact I will never hear him sing or shout or chat with friends like those little ones in the park. I grieve for the fact I will never hear him tell me a joke or talk to me about his day at school. I grieve for the loss of never hearing him whisper ‘I love you’. I can only dream about what his little voice may sound like, how it might have grown in depth and tone as he aged, what sort of accent he may have had or how he would pronounce names of people he knew. A part of him will never be. And I feel the loss and pain of that.

I grieve for all the milestones I have missed and may never have with him. As I watched a mum bend down to hold her son’s hand today to help him walk I thought about how much she takes for granted. Her little one was not much over a year old and yet he confidently held her hand to take some steps. By the time my child did anything like this he was tall enough that I had no need to bend and his hands were nothing like as tiny as her son’s. I have skipped the toilet training, the bike riding, the learning to read and write, the school plays, the attending clubs and the having friends. I have been robbed of things others take for granted and that should be part of normal childhood. There is a loss and a sadness for times that might have been but will never be.

There is sadness that I can not walk him to school or that he can not go to school with his twin sister. There is pain relying on others to tell me about his day when I should hear it from him. There is heartbreak watching the neighbours child of the same age jump on a trampoline and my son can not balance on one leg let alone jump. There is a lump in my throat when people ask what my child wants for Christmas and he still plays with baby toys at almost seven. We have never experienced the tooth fairy with him, he has no concept of Santa Claws and neither chooses his own clothes nor has the ability to dress himself. He has never said ‘mummy can I have’ or gone in a strop because he can not go out to play. He has no friends his own age and doesn’t get invited to parties.

He is here but to many he isn’t.

I have a son. He is my pride and joy. I am so proud of everything he does. But I still grieve for him, for the things he will never achieve and the experiences he will never have. And I grieve for myself as a parent when I see a world of parenting I can only ever dream about.

As I sat on a bench in a public park the tears came easily; tears of heartache and anger, tears of frustration and pain.

It is all part of the journey. Before I can move on I need to grieve for the loss. And grieving takes time.

So please forgive me and support me. Life goes on and I understand that. I have no bitterness at that.

But sometimes those tears are needed. Bear with me as I grieve for a child I haven’t lost.

Extremes of emotions on holiday

We all experience emotions all the time. And children with autism are no different. But where we can usually calm ourselves down when angry, understand the need to slow ourselves down and end a game rather than becoming hyper or even soothe ourselves when sad, this is an area where people with autism can so often struggle. They find regulating emotions so difficult and can often swing from one extreme emotion to the other very quickly leaving everyone around them puzzled and confused.
This week I have seen this become an every day reality in my non verbal son. We have been on holiday this week in a caravan. No matter how hard we try, his routine has had to change. There is no school on holiday and at times this has been a massive challenge for him. He has used the iPad to show me pictures he has found of anything school related in an attempt to question why he isn’t going there. This is not helped at all by the fact the only thing he will ever let us dress him in is his beloved school uniform. He doesn’t ‘do’ holidays. He ‘does’ school. So even in a caravan 50 miles from home he has still been looking for his school taxi and pointing to any similar looking car we pass and screaming.
Every day has been like walking on a tightrope. He doesn’t ‘do’ wind down and chill. He does ‘get up and go’ from the second his eyes open to the second the melatonin finally kicks in and he drops off for a little sleep. And for a non verbal child he can be extremely demanding and loud.
Internet is limited where we are. And boy has he let us know how this has frustrated him. His favourite interests on the iPad are you tube videos of lift doors opening and closing over and over again, and google maps. And he has been most unimpressed that you tube and google do not work as he expects them to. You can’t explain terms like signal or coverage or wifi to him. All he knows is he presses the buttons and mum makes them work. So mum is at fault. And he then throws the iPad at me, scratches me, bites me, hits me and screams. Holiday? What holiday? Autism doesn’t take a holiday.
So you take him out and keep busy. But this isn’t the swimming pool he normally goes to. So you have to literally drag him screaming through the corridor to the changing rooms because he does not understand that other places can also be swimming pools. And he screams at the look of the different changing rooms. And I start to question if all this is worth it. The moaning, the screaming, the ‘challenging behaviour’ seems endless.
But then he gets in the water and immediately changes to the hyper, laughing, splashing, happy boy. Within seconds it was like someone switched my son. From one extreme emotion to the other just like that! And then getting out he switched right back, instantly his body got out that water.
The same with soft play. He loves soft play. But nope, this isn’t soft play to him. Because it isn’t one of the ones we normally go to back home. So you pay money to carry in a screaming five year old while everyone looks at you and quickly turns away. If only this child would wear his autism t-shirt at least now and again. But no, he has to wear his school uniform which just somehow makes it all look worse. It must look like I am manhandling a child on some school trip to the seaside. Who would believe we are actually on holiday trying to have some down time? But once in and he realises that this is a soft play, the tears stop, the flapping and chest beating starts again and he giggles like he is the happiest child you ever met. If only the scratches and pinches he gives me could vanish as quick as his tears!
Going anywhere in the car this week has seen him in default mode of whine. ‘Uh, uh, uh’ has been on constant play since the minute the car pulled up to the caravan park. It is a dull moan of wanting attention, of saying in his own way that things are not ‘right’ for him, of making it clear he isn’t happy. But the whining barely stops. So you would think this child was hating being in the caravan on holiday.
Yet one minute later he is out on the decking flapping, running up and down, laughing hysterically at a dog barking or cow mooing. Or waving his arms in complete ecstasy because he is being pushed in a swing. There is no in between just now.
So I feel like I am on that swing too. Except it never stops. We have the highs of laughter, hyper ness and flapping and chest beating followed immediately by screaming, moaning, scratching, kicking, pinching and throwing. We have the sheer innocent excitement of seeing the seaside followed immediately by the danger of him running straight out to the sea. Unless he is strapped in a car seat, buggy or swing there is no sitting down. There is no watching a dvd or looking at books, or colouring in like his twin sister. It’s just all about him. It’s all go. It’s exhausting and draining. For everyone of us.
In fact I need a holiday to recover from the holiday! Autism doesn’t take a holiday. It is extreme one way and extreme the other. Isaac can’t regulate his emotions. And right now I am struggling too. If you asked me how the holiday was going I would have to answer with ‘sometimes wonderfully, sometimes dreadfully.’ If only there was a happy medium. Now that really would be a holiday!

Sometimes I cry…

This has been one of my hardest blogs to write so far. It has been a very challenging week and most days tears have been shed. And tonight all four of us shed some tears. It hasn’t solved anything but it helps release the emotions of a stressful week.

Firstly there have been tears thinking of preparing my baby boy for starting school in just 5 months time. Having your baby start school is an emotional time for any mummy. And everyone says how emotional it is to see your treasured baby suddenly wear school uniform and carry their first school bag. But for me it really is my baby. He is still drinking out of a baby bottle. He is still wearing nappies. Still reliant on me to meet his every need, still eating with his fingers, sucking on a dummy, being carried up and down stairs and still unable to speak a single word. He only took his first steps 18 months ago. And because of the system in the area we live in we still don’t know where the local government plan to send my special baby to school. As a parent I have researched in detail all the local provision available and even tried to visit schools to see what services are available. Frustratingly the council are not allowing me to visit my first choice school until they have formally notified me of their decision. I still don’t know when this will be. Thinking of my baby starting school makes me cry. Will they know how to communicate with him in a way he can understand? Will they know he would happily carry on playing in a dirty nappy for hours trapped in his own world? will they have any idea why he is flapping? Will they let him take his socks and shoes off like he loves to do at home? Will they know what his all time favourite things are to calm him down (water and feathers)? Will they care for him like I do, hold him when he cries and tell him how special he is? It may be 5 months away but I still shed a few tears thinking of all this.

Secondly there have been tears after some difficult phone calls. Calls from people who have never met my precious boy but who feel they can tell me that his needs are not ‘severe and complex’. I cried tears of sadness after that call. Then a call from a friend telling me a good friend of mine had just passed away. More tears. And the following day calls from a charity willing to help me fight to get my son into the right school to meet his needs irrespective of what the council recommend.Tears of relief and gratitude.

Then I shed more tears after a routine eye appointment for Isaac uncovered news that due to his neurofibromatosis type 1 and other scarring on his right eye it is likely he has very little vision in his right eye and that over the last 8 weeks there has been a real deterioration in his vision in this eye. My poor boy was unable to communicate any of this too me. And to discover all this he had to endue 24 hours of blurred vision and possible headaches due to having to have eye drops put in both eyes. Oh my baby… sometimes I just cry for you and everything you are having to go through.

Tonight he fell and really bumped his head at a children’s club. It was a real sore one and tomorrow he will have quite a mark on his forehead. I held my baby boy and shed tears with him while everyone continued playing around us. I wish I could wrap him up and shelter him from life. I wish I could just sit and hold him in my arms sometimes and pretend the world is just passing us by. I know he will survive this bump and I also know there will be so many more. If his vision is so poor and his co-ordinations and motor planning so affected by his autism and developmental delay there is no doubt there will be many more bumps to come. Please Lord protect this baby of mine from any internal damage I can not see.

And now comes the hardest part to blog about. The hardest part to share with a world of people I hardly know. The part this week that has brought more tears than any of those other challenges we have faced joined together in the last 7 days. The reports and evidence that my baby boy has stated to self harm. He has started to bite his wrists until they bleed and does not seem to feel the pain. Oh Jesus….help me as I drown in my tears. Carry me through this valley. I want to talk to my baby, let him open his heart to me, hear his cries, share his tears. Instead he chews on a metal teaspoon watching peppa pig, and so locked in his own world I can only imagine the pain and frustration that could cause my 4 year old baby to self harm. Is it excitement, frustration, anger, stress? Is it sensory related or a sign you are hungry or thirsty? Oh baby…I wish you could tell me. I want to help you.

So in all this I cry and I pray. And I believe that tomorrow is a new day. A fresh start. And God will carry us through all this. I still have a strong faith…it’s just sometimes I cry.

“you keep track of all my sorrows, you have collected all my tears in your bottle. You have recorded each one in your book. My enemies will retreat when I call to you for help. This I know: God is on my side.” Ps 56:8-9 NLT