Four things my severely autistic son has taught me


Having a baby is the most wonderful, humbling, exhausting experience I have ever known. I thought it would be a challenge but I would learn and gain so much.

 
Then one day my baby was diagnosed with severe autism.

 
Everything I had ever known about parenting suddenly changed.

 
I went from being the teacher to becoming the student and despite my son having no ability to speak he has taught me more than any speaker, any book or any course every could.

 
Here are five things my severely autistic son has taught me about life:

 
1. If you enjoy something, repeat it! 
All too often in life we are told to ‘move on’ or ‘grow up’ or ‘you are too young for that!’ My son has no concept of age appropriateness nor is he affected in any way by peer pressure. He enjoys a ride on a train to the same station to see the same elevators over and over again. He watches the same videos on you tube over and over. He presses the same button of the same toy repeatedly and still laughs.

IMG_1391

 

Isaac has taught me that if something fills your heart with joy never be ashamed to relive that. Life is to be enjoyed over and over and over again. I need to go back to finding joy, just like him, in the simplicity of life over and over again.

 

 

2. Stop worrying about other people!
Isaac has no awareness of others. He is not afraid to get on a roundabout even if a group of older children are in his way. He is not afraid to flap, spin, laugh and clap even if others don’t join him. Bullying goes right over his head. Comments from others don’t affect him. He could not care what he is wearing, where others are going or wether he is included or not. He does not aspire to be politically correct nor does he want to lead the crowd. Instead he is blissfully content being who he is, exactly how he wants to be.

 

I want to be more like that.

 

Life is not about doing what everyone else is or pleasing others. He is different, and happy to be so, and there is a lesson there for all of us.

IMG_1126
3. There is other ways to communicate without using words.
I talk far too much. Most of us do. Isaac can not talk at all so he relies on other, much more basic ways to communicate. He sits beside me if he wants a hug, he screams if he is unhappy or scared, he takes my hand to lead me, he finds photographs of things he wants.

 

To most his communication is too basic, too rudimentary, to learn anything from. They are wrong. Speech is not a ‘higher’ level of communication but rather a way to communicate that is actually too easily misunderstood. We can say we are happy yet our body language says otherwise. We can say we love when we actually don’t. My son simply shows me in beautiful and simple ways. They say actions speak louder than words and perhaps we all rely way too much on spoken and written language when a simple hug or smile would convey much more?

 
4. Don’t worry about the future, just enjoy today!
Isaac has no concept of ‘future’. He lives in the here and now and at 8 is just about coping with the basic idea of ‘first and then’. He has no worry about politics, or religion or current affairs. He has no concerto of wars, shootings or terrorism.

 

He lives in the moment.

 

He eats food and enjoys every item with no consideration for cost or sell by dates. He is as content to eat an out of shape vegetable from a low cost supermarket as he is eating out in an expensive restaurant. As long as he gets to eat he does not care! He never stresses about money or where it will come from neither does he desire anything of any real value. He will play with a coat hanger flapping it for hours without any idea that most would view it as trash. While we may not be quite as able to ‘live for the moment’ as he is we certainly could learn from his care free lifestyle and worry much more about today than the future. First today, then tomorrow could be a motto for us all.

IMG_0933
Isaac will most likely never read, or write or live on his own. Does he care? Not an ounce. He has zero idea about toilet training and he is not in any way worried what anyone thinks about that. He wakes up every morning happy. He laughs at the same you tube clip that he laughed at yesterday, and the day before, and the day before that too! He drags me to the cupboard for food and is neither brand aware nor cost aware.

Life is simple. Life is fun. Life is about today. He dances to his own beat and I am proud of him.

 

He brings me delight every day. He has so much to teach us.

 

He may be severely autistic and non verbal but the world is a better place for having him in it. 

 
People tell me he needs to be more like us. I disagree. We need to be much more like him. 

 

IMG_1466A version of this blog first appeared here

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.
image
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.
image
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.
image
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.
image
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!
image
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.
image
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 am determined this is going to be positive

Sometimes major breakthroughs in one area come with challenges in another area. This has been so true for us this week as one child has made a huge leap whist at the same time we have had to come to terms with yet another diagnosis for the other one. But whatever both children face I am determined to stay positive. They are both so young and we have the support of some great professionals and a great school for Isaac that I have every reason to be positive.

So I will start with the new diagnosis.

Isaac has always had a eye squint. He was born with it. All my family wear glasses and all my husbands family wear glasses too, so the kid had little chance of avoiding some sort of minor eye issues. Saying that, so far his twin sister has passed every eye test and has no trace of a squint so perhaps his squint could have self corrected given time.

Unfortunately his squint has been getting worse as he has aged. He has, and still does, attend the hospital eye clinic regularly. Then came his diagnosis of neurofibromatosis type 1 in Decemeber and more frequent visits to the dreaded eye clinic, more drops to be administered and more lights shone in his eyes. Neurofibromatosis is a tumour condition that can cause eye problems as tumours form on the back of the eyes. It has always been difficult to fully test Isaac’s eyes as he only focusses on the things he chooses to and so looking at boring pics of grey trains and houses was never high on his agenda. And his learning difficulties and global delay and inability to speak makes conventional testing inappropriate.

Back in mid March I mentioned in my blog ‘Sometimes I cry’ that specialists were now thinking Isaac only had vision in his left eye. One of those gorgeous brown eyes had not formed properly at birth and extensive retinal scarring meant that his vision was affected. Sometimes you could see only one eye was focussing but other times it was yet another ‘invisable’ disability.
eyes

This week we had a home visit by a vision impairment pupil support specialist. Now that Isaac is in full time education this specialist wanted to visit and talk to us about anything we could do at home or the school could do to support Isaac. Through detailed information from Isaac’s eye doctor, information from his nursery and from looking at home photos and videos of Isaac he was able to confirm what we had been hoping to avoid. In addition to having classic autism, neurofibromatosis type 1, global developmental delay, severe learning difficulties, pica and seizures our son also has a vision impairment. What a lot for a 4 year old to deal with! I was sad, I was heartbroken for my baby and frightened of what the future holds but I am determined this is going to be positive. My God can turn any negative to a positive.

Here are the positives:
He is right at the beginning of his education so full support can be put in place now.
He is still non verbal and his speech and language therapist was about to introduce pecs (picture exchange communication). We can now ensure the size and colour of pics helps him see these as well as possible.
His disability money has recently been reviewed and his award given indefinately so informing them of this new diagnosis would simply be a phone call rather than a re-submitting of pages and pages of forms.
His left eye shows great vision so he will not require glasses at present (which is fantastic as these would only get chewed and eaten!)
We now have a further explanation of why he likes to walk up and down beside bushes and walls. He has remarkably developed his own coping stategies by using these large visual markers to support his vision. This boy is inspiring!

Here is my beautiful brown eyed boy enjoying exploring his space blanket this weekend:
space blanket1

And his vision seems to make a remarkable recovery when food is involved. Yesterday I had to leave my soup for a minute to deal with his twin sister who was lying on the sofa unwell. By the time I returned to the kitchen a minute or so later here was Isaac helping himslelf to my lunch!
lunch

His first tooth fell out this week too. In true Isaac form…he ate it! I’m sure it would be a good form of calciun and it is certainly not the worst thing he has ever eaten I can assure you.

And now for something even more positive. Something remarkable. Naomi came home from nursery last week and told us the name of a friend! This girl has never spoken in nursery, although she has been going for two and a half years now. She is selective mute and has social anxiety and is on the autistic spectrum too. She tells us about everyone in nursery (staff and children) by describing what they are wearing, so to finally know a child’s name is such an answer to prayer. This little boy is in her group at nursery and she even said she plays with him! I thought I would push her further and ask ‘have you spoken to him?’ If you count a whisper then we have major progress indeed! My sweet little girl then asked me if we could write Ewan a letter and ask him to come and play with her.

So mummy wrote a little letter to a family she has never met inviting a strangers child to come for a play date. And this mummy was as excited as her daughter when Ewan’s mummy called to set up thier little date. I can’t wait to tell you all how it goes. However anxious or nervous my daughter feels on the day I am determined this is going to be positive. We will do a run to the house first, we will talk about what will happen and we will read stories about playing with other children and going to other people’s houses. And the nursery will support them both and encourage the friendship too. A first ever friend to play with.

Whatever else this coming week brings we have this to look forward to and whatever else we face I know I always have my family and my God.
And a determination next week is going to be positive as well.
Here is my wonderful daughter playing a boys game ready for her first ever play date:
cars