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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Grieving for a child I haven’t lost

imageAs 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.

World autism awareness day

It just would’t seem right as a mother of two children with autism to let this day pass without writing in my blog.

I had so many plans to write a positive, upbeat blog about how great my kids are, how much autism has taught me and how proud I am of them.
Yes that is all true but yet ironically, today of all days, autism has hit me right in the face again.

It started off so well with publishing a video on social media that was received well. Both kids got off to nursery and school easily enough and I even got to get a hot cuppa without the phone ringing or the door bell going. Gosh, I even managed a shower!

But then my daughter came home from nursery with that look that told me her morning had been a struggle and she was right on the edge of crying. Call it mother’s intuition or whatever you like, but I just knew this was a ‘big one’. This was something that was going to take days or weeks to recover from. And I was right.

First thing I noticed was the smell. My poor baby girl had been in a dirty nappy for hours and it hadn’t been noticed. She is in a busy mainstream nursery where she doesn’t speak but complies with requests without question, and is hugely anxious about approaching or interrupting staff. So she would never ever say she needed changed. After being refreshed and fed she told me exactly where she was when she ‘went’ and what she was playing with (she is a girl of detail) and how she looked at a member of staff but they ‘never noticed me’. You see, this is autism. She has no idea, even at 5, that the staff can not read her mind. They can not understand that she needs changed simply by her looking at them. And she did say they never even looked at her back as they were ‘busy like they always are.’ So my baby just carried on with a soiled nappy on hoping someone would notice.

It came to snack time. She rarely takes snack but staff are trying to encourage her more. So they succeeded and she sat reluctantly on a chair even though this was uncomfortable. Why? Because the ‘lady told me to sit down’. She was then offered strawberries which she took because she was told to. But she hates strawberries. They make her sick. So she naturally left them on her plate. Staff (who understandably have no knowledge that these make her sick as I forgot to mention it when enrolled her 18 months previously) encouraged her to eat them. So she did. Even though they make her sick. Why ‘because the lady said to eat them.’ Her autism makes her compliant to rules, even if those rules mean she will be in pain and discomfort. She has to obey. That is the rules. That is what you do.

At circle time she went to the carpet. By now she was sore and very reluctant to sit down. So she stood and looked at a member of staff. A silent plea for help. A silent hope that they could read her mind. They told her to sit down. So, despite the pain this caused, she sat down. ‘It made me sad mummy’. Oh baby, it makes mummy sad to hear this too.

She then sat on a bus for 45 minutes to come home. Still no-one noticed. Until finally she got home and it all came out. And shortly after telling the story she was sick. Then sick again. And again. ‘I ate strawberries mummy and I always get sick when I eat them.’ She knows. But would she do it again? Yes she would. Because she can’t seem to break the rules. If someone tells her to do something she will. She is obedient without question, even to her own pain.

She won’t be back to nursery for weeks now as she will be off sick tomorrow and maybe the next day too. And then the schools are off on holiday. Perfect timing as she never wants to go back.

I thought we were getting somewhere. I thought we were getting closer to going to mainstream school. Today reminded me we have such a long way to go yet.

I so wanted to be upbeat on this world autism awareness day. But autism doesn’t take a day off. Autism hits you when you least expect it. Autism can still be hard even when you accept it and embrace it head on.

This isn’t about the nursery getting it wrong today. Things happen. People are human. And they can’t be mind readers like my daughter thinks they are. This is about a little girl who is vulnerable, hurting, and confused.

This is about a little girl who is now sick. This is about my heart breaking once again. This is autism. On world autism awareness day.
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