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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How do you explain they won’t ‘get better’?

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If I had a pound for every time someone told me my children will ‘grow out it’, or ‘be fine when they are older’, I would be a rich woman. People expect you get ill or have difficulties for a short time, you have a period of struggling, and then you ‘get better’. You ‘get over it’ or ‘snap out of it’, or you have an operation or take medication, and then you become ‘normal’ again and function like everyone else.

But what if the difficulties and struggles are life long? What if you won’t get ‘any better’ even if you improve?

It is three years this month since we received my sons first major diagnosis. Though the initial shock and pain has eased I still get sad some days. Because three years on we are still in that same place.

He still has the exact same diagnosis. He hasn’t been cured. He hasn’t went into remission or stopped having his difficulties. I can’t read his diagnosis report and think they are talking about an altogether different child than the one sitting on my knee.

Yes he is making progress. But it is slow. And in spurts. And sometimes we still get regression. Oh are we allowed to mention that? The dreaded ‘regression’ word? Am I allowed to admit that sometimes my children struggle more than they did before? Or lose a skill they previously mastered?

How do you explain they won’t ‘get better’?

It sure looks like my son is getting better. After all for 678 days all he wore was the same red school jumper yet all of a sudden now he will wear other tops? That sounds like improvement. And it is! My daughter has started to master reading and writing. Surely that is her ‘getting better’ you suggest? And yes it seems so.

On the surface my children are both coming on well. We have had a recent successful play date, we have had them taking part in school activities I never dreamt they would ever manage, and two weeks into the summer holidays we have managed some days out and visits to parks. It seems like everything is ‘getting better’. It seems like to some that all is well.

Because people find the life-long bit so hard to understand. People see what they want to see. And after a while they get bored with seeing the same struggles, the same excuses and the same problems. People want to help and get upset when they do help but the problems still exists even when they have done everything they can to support. We look for quick fixes and short-term solutions and life long conditions need on-going, energy draining, never-ending support. It requires a commitment few are willing to make.

It is hard for people to understand why three years down the journey I still get sad some days. Why? Well because some days it feels like I am still where I was three years ago. It hasn’t gone away. And it never will.

There is no cure.

My daughter may ‘get better’ at social situations but it will never quite come naturally to her.
She may ‘get better’ at understanding that not all language is literal in meaning. But idioms and sarcasm will always need explaining to her with patience and understanding.
My son may ‘get better’ at being understood without any speech. He may one day learn to communicate via a device or language or pictures. But he will always have severe communication difficulties to some degree.
My son will never ‘catch up’ with his peers. He is not suddenly going to run a race, or write a story or learn to swim. He may never speak.
I have no idea when they might master potty training.

We are in this for the long haul. When others get ‘bored’ and move on we will still be here. We will still be struggling on.

Doctor’s can’t ‘cure’ my children. They won’t ‘get well soon’ or ‘grow out of it’. It won’t ‘magically disappear’ when they get older or become teenagers. In fact it may magnify.

You may not see them struggle but they do. It may seem ‘cute’ to flap and suck on your clothes at six but whimageat about sixteen? It may seem ok to have your tongue out all the time at six but what about ten? Or thirty?

My children have autism. My son has neurofibromatosis. They will become adults with autism one day and my son will become an adult with NF. His tumours will grow with him and his skin will grow fibromas and patches throughout his life. He will become an adult with social and communication difficulties and a learning disability.

They will ‘get better’ at developing a thick skin and coping with ridicule. They will ‘get better’ at devising coping strategies and becoming a part of society in some way or other.

But they won’t ever ‘get better’ from their life long conditions. And I may never ‘get better’ at coping either.

I may have more good days now than bad. But some days I am right back where I started three years ago. Life long condition means a life long journey. I know some people find that hard to deal with. But you know what? So do I.

It’s all about me!

Being positive is not being in denial. Posting highlights of your day on social media is not being fake. Trying to find hope in hopelessness is not wrong.

Attitude means everything.

And recently I have had to give myself a good shake.

Living with the daily challenges of two children who struggle can really get me down. Some days, more than I would like to publicly admit, I cry. I worry about the future. I struggle through everyday, often silently. And I feel alone.

But then I realised something important. I came to realise it was actually all about me!

I could look at things negative. Or I could try to see a positive.

imageFor example I could have wallowed in upset at the thought my daughter was so anxious she never made it to her first ever school trip. I could have become angry that she seemed to be excluding herself due to fear. But instead I chose to take her out for the day instead and shared a picture of her smiling face at a science centre rather than dwelling on her inability to join her peers at the zoo. School trip failing verses mummy and daughter quality time? Which would you have thought about more?

imageSame with sports day. I could shed many a tear over the fact my daughter was unable to join in many of the activities due to her difficulties. I could share pictures of an older girl having to take her hand and support her for even the simplest of races. Or I could take pride in the fact that on the tenth go at running around the cones my six-year-old finally had the confidence to say ‘can I try that myself?’. Those nine turns at needing support could have broken me but that final time doing it independently will make up for that every single time.
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And then there was her class assembly. I was hurt and devastated when my daughter came home to say she was the only child in the class who did not have a speaking part. Her teacher had asked her and she had told them she felt she could not do it. Though I admired her honestly I have to admit I also felt so sad. For her, and for me. But can I tell you something? There was not a dry eye in the house on the day of her assembly when she took centre stage and held the entire show together with the most crucial part in the play despite not saying a single word! In the words of my six-year-old, ‘We can’t all have speaking parts. Someone has to do the acting!’ There is so much wisdom in that.

I could think about the sadness of taking her to yet another appointment.Or I could look at her smile as she played innocently in the waiting room and her sheer delight at being given insoles to help turn her feet. I think as adults we too often set our minds on that appointment rather than the child-like look at it all.
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I could be angry at the fact I never get to sit in church with everyone else due to my children’s needs. Or I could take pride in the fact my children will sit outside the hall in their own little bubbles allowing me to at least be in the building. This is progress.

I could be embarrassed that I took my children to visit a friend and my son preferred to feel her garden bush than to be social. Or I could snap a picture of his happy face and be grateful my friend accepts us for who we are. And is happy for us to come back anytime.
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I could shed tears at the fact my daughter recently went to a party and spent two hours sitting at the side next to me on her own. Or I could be delighted she was invited in the first place and see this as progress that she stayed in the room and enjoyed watching.
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I could become frustrated at the fact everywhere we go my son is fixated with the elevators. Or I could ride with him, film him and discover on play back that he actually said the word ‘again’! Had we not been at that lift I would have missed that word! He hasn’t said it since but I have a video as proof and in time I may one day hear it once more!
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And finally I could despair at the fact that for almost two years now my son has refused to wear anything other than his beloved school jumper. I mean literally every day I only get to see him in red. It started off funny but then in time I somehow gave up hope. Then, just today, he let me put a t-shirt on him and he kept it on happily all day long! And after all those tears, hopelessness and feelings of despair, I found a reason to smile again.
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My children have some real struggles. I will never deny that. And everyday is a challenge. But sometimes it isn’t about them. It is about attitude: My attitude. Sometimes it is how I see things that makes a real difference to everyone else.

And now I realise that: it is all about me!

I’d rather walk through the storm with you

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Winter in Scotland can be brutal sometimes. Yesterday morning was one of those mornings. Cold, wet, very windy and still pretty dark as the children needed to leave for school. So even though her school is, at most, ten minutes walk from our house, I offered my little six-year-old the chance to take the car.

‘No’ she insisted. ‘I’d rather walk through the storm with you.’

So we wrapped up, zipped up and headed outside.

There were times when she was almost blown away. But we held hands tightly and neither of us planned on letting go.

There were times we could hardly see where we were going. But we just kept walking, one step at a time, encouraging each other every step.

There were moments I thought we should turn back and climb into the warmth of the house or the dryness of the car. But we had a determination and a purpose and the destination was within reach. It may have only been a ten minute walk but there were moments it felt like eternity. The intensity of the wind, the driving rain in our faces and the cold taking our breath away. ‘Keep going’ she told me and keep going we did.

Of course we arrived. We were a little windswept, our clothes were wet and our faces red from the cold. But as I left her in the safety of her school and walked back home myself through that storm I realised the value of walking that day.

My little daughter was gaining strength, courage, determination, and the gift of encouragement this morning that going to school the easier way would not have taught her. And she chose to do that of her own free will. She wanted to go through the storm with me because she loves me.

I feel like I have been walking through a storm like that for years. When I found out my precious children were not like other children it felt like I was being beaten down by a gale force wind. Constant appointments, diagnosis and fighting for what they need feeling like cold, icy rain forever falling on top of me. The waking up every morning facing the same pressures of caring like the darkness of a cold winters morning that never seems to end. The not knowing the future like the freezing cold temperatures numbing you to the pain.

It is so much easier to get through the storm holding someone’s hand. There is strength that comes from the encouragement of another little voice saying ‘keep going’. There is a love that grows deeper, a bond that gets stronger and a determination that grows continually by facing the storms of life with another one.

Don’t go it alone.

I know that having you all alongside me is what is making this thing called life easier.

Everyone one of you means so much to me.

Don’t let go of my hand please…because I’d rather walk through the storm with you.

I’m still here, and I still love you

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Though you have just this minute screamed so loud in my ear that my entire head is ringing. I still love you. Though you have laid on the floor hitting your head in anger and frustration, throwing everything in sight about, I still love you. When you bang the table and spin your dinner plate in annoyance because I am not cooking your dinner fast enough, I still love you. When I lifted you to safety because you were about to walk head first into the corner of the kitchen work top and you rewarded me by biting me. Even in that moment, when the pain went right through me, I never stopped loving you. When you wake me up screaming and making noise in the smallest of the small hours through the night and I find myself getting frustrated and exhausted. When I roll you over, whisper in your ear quietly and give you your dummy once again because I know you need to try and sleep. Even in the middle of the night I’m still here. And I love you. I love you in all your pain, in all your frustrations, in all your laughter and in all your flapping and chest beating. I love your quirky ways and sense of humour. Even when it seemed, during the 276 days you solidly and religiously only wore your school jumper every day (yes even on Christmas day) I was sighing inwardly. I love how you thought it so funny to wear a blue top, just like that, after so long, only to go right back to only wearing that same red jumper again every single day. Even when I could cry, or I walk away to gather my patience once again. Even when I put you on the naughty step or take you to your room, even when I tell you ‘finished’ and ‘no’, even when it seems like I am the last person you feel cares, right then, I’m still here. And I still love you.

When you stamp your feet at me, shout at me and demand of me, and I tell you off for being rude or cheeky. Right there, at that moment when you want to walk right away from me and never talk to me again, right at that precise moment, I still love you. When you play with your toys and accidentally smash my favourite mug, or spill hot tea everywhere, or pull the toy right at the bottom of the pile knocking boxes of various things flying across the room. When my mouth says ‘stop that right now’ or ‘that’s it’ or ‘I’ve had enough’, my heart is still full of love even when my emotions get the better of me. When you wake up in the middle of the night from a scary dream and you call out my name. It doesn’t matter if I am not right there in your room. I am still here, and I still love you. When things are tough at nursery, when you just can’t seem to speak or work through your anxieties, when your one and only friend is not in that day and your heart sinks, I might not be holding your hand, but I am right there. When the dentist visits again and you instantly have flashbacks to the trauma of having your teeth coated with fluoride and how the very taste made you vomit because you could not bring yourself to spit out the excess stuff, I am right there. I have gone before you and prepared a way out. When I know it will just be too much for you I ticked that box that said ‘I do not wish my child to take part’. Because I love you. And I know how much you can bare. When I ask you to be quiet in full conversation because the phone just rang and you get frustrated because you didn’t get to finish what you wanted to say, when I push you to try on pants again when you would rather stay in nappies, when I get you to try and dress yourself when you would prefer I did it for you, it is all because I care. When you are struggling to pull those trousers and pants up when you have just sat in the toilet and you feel I have left you alone in your embarrassment and shame, I haven’t. I am watching, praying, pushing, stretching you and helping. I’m still here. And I love you. In the tears and the frustrations, in the moments you want to be alone, in the moments you are afraid or worried, in the moments of excitement and laughter, in all of those and more, I’m still here.

When the silence isn’t because we are a peace but rather because words have got lost in the stress of another long day. When you are leaving out one door as I am coming in from the other. When you can’t see any joy in the week through the stream of appointments and commitments. When the sum total of our kisses seem to be a quick peck on the cheek. When night and day become a non stop blur that never seems to end and intimacy is pulling the duvet closer around you. When the flame of love is a spark barely still flickering. When you have tripped over one stray toy too many, heard the same clip of dvd so often you are tempted to see if the dvd can be fried for lunch one day, and there is no longer any laughter at the dinner table. When you are still clearing away the dishes from the previous meal whilst I am cooking the next one. When you drive the car to get groceries and you are temped to sit in the car park for half an hour before going in just to get time on your own. When you have a head ache that has gone on so long you start to forget what it is like to no longer have one. When the only hand you hold is a young child’s to help them down the stairs when once you used to hold hands with your best friend and lover. When you dread the school holidays because you just don’t know what to do with the kids anymore. When your child wants pushed on the swing for so long you start to lose feeling in your arm and your chin is growing a beard while you stand there. When it seems hope is lost, the clouds will never move and the hill will never be conquered. In all those times I am still there. Still praying. Still holding on. Still loving you. We will get through this.

When you have given up on me. When you think all is lost. When hope seems a distant memory. When you sit in the middle of the floor when the children have gone to bed and the tears won’t stop. When your heart aches just to be close to someone. When you think you just can’t face another day…don’t despair my child. I know it is hard. I know some days you just feel so alone. But I need you to remember something, my precious one: I’m still here. And I still love you.

“Because you are precious in my eyes, …and I love you…for I am with you.” Isaiah 43:4-5
“And surely I am with you always, to the very end of the age.” Matt 28:20
“The steadfast love of the Lord never ceases” Lam 3:22