They can’t just “get over it”

image

image

 

 

 

 

 

 

 

 

 

 

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
.

Advertisements

Give me time…

I am a great believer in that one of the best things you can give anyone is time.

Time is a gift that is irreplacable. Life passes by so quickly and children grow up in the blink of an eye, but thier most precious memories will be of time spent with loved ones and our most precious memories will be of all the things we did with them.

But the reality of life is we have so much pressure on our time. I only have two children and I am a stay at home mum/carer but yet my time is in so much demand. The children need to be at nursery on time, they need picked up on time, hospital appointments, finding time for family and friends, keeping the house clean and tidy, time to cut the grass and tidy the garden, cooking, shopping, filling in forms and keeping up with paperwork. But my children want my time and my daughter is constantly saying ‘play with me mummy’ and my son screaming for attention. And in the priorities that compound me each day I need to give them that time.

I have been taking the time this week to complete some paperwork on my son for his transition to school in just 4 weeks time. He has classic autism, neurofibromatosis type 1 and global delay. At present he is non verbal. So I am completeing a booklet entitiled his ‘communication passport’ to give the school as much insight into Isaac as I can. And in doing this I have come to realise that Isaac needs so much extra time. Yes, he clearly needs extra time and support to meet milestones other children take for granted and extra time to adjust to new settings and people. But most of all he needs extra processing time.

When I say he struggles with transitions I do not just mean he struggles with moving from nursery to school or going into a new hospital room to be examined. Isaac struggles with the simplest transition like being asked to come to the kitchen table and eat a meal. He knows the food is infront of him, and he knows it is time to eat but give him time to process all that information. He will make noises, flap, look around and generally look like he has no idea why he is there but this is his way of taking in and processing what is required and where he is. So I am asking the school to give him time.

And if you give him time he can amaze you! Last week he carried the same book around with him for days. He even took it to bed, on the nursery bus and in the car. He turned the pages, stared at it for ages and scanned the edges across his eyes. But he was processing something. One day he sat on the couuch and stared intensly at the same page for almost 10 minutes. And then he screamed. When I went over and asked ‘what do you want Isaac?’ he grabbed my hand and put it on this page:
book
‘You want ice-cream Isaac?’ This was the first time EVER he has used a picture to communicate a want! He ran to the freezer. So the first ice-cream I offfered was pushed away and then I re-looked at the picture and put a chocolate flake like he had seen in the book. And he took it and smiled. It was way closer to dinner than I would have prefered for having ice-cream but I just HAD to reward that communication. He had just needed extra time to make the connections. So perhaps I should be telling him it is bedtime an hour or two before the event? I might need to try that one!

Both my twins are really pushing the boundaries just now with temper and tantrums. Some days I feel I am correcting them, sending them to the naughty step and dealing with screaming all day. Even given thier challenges there are times when they are both just being naughty. But disipline takes time. If they seem a bit selfish, a bit grumpy, very loud and screamy or you see my son banging his head off the nearest surface in temper, bear with me. I am on it. I am training them. But please…give me time! Give them time to be children and give me time to correct naughty behaviour. Children are not born little angels and learning right from wrong takes a very long time. Even us adults could do with time on the naughty step to think some days!

Time is a great healer. Time can bring answers and results and restore lost confidence.

Naomi still isn’t talking in nursery. And she still really struggles with anxiety. But she is slowly gaining more and more confidence. She recently let me video her reading a book. And she loves watching herself back. If you speak to her at first she will blank you because of her anxiety. But take the time to get to know her and she will eventually whisper to you and then talk. Be patient. I really believe in time she will speak publicly. That is one of the reasons why we have kept her in nursery another year. She just needs a little extra time to gain confidence and skills that others take for granted. Her toileting will come in time too. She had a bladder and bowel scan this week and hopefully the results will help us know where to go from here. But it all takes time.

So I’m thinking of getting my kids some t-shirts with ‘give me time’ printed on them. I could really do with one too!

The world is so fast paced. Seasons and times change so quickly. So take the time to enjoy your family and friends. Take the time to enjoy life. Judge less and give people time. But most of all give your children time. Time to be children, time to play and time to enjoy life.

I really hope you have the time to listen to Naomi read to you. It has taken her such a long time to get the confidence to do this. Enjoy ‘Shaggy dog and the terrible itch’. I have enjoyed reading it to her so many times!