He played with a toy!!

imageThe teachers had a training day and here I was with an entire day with just one of my children. I thought it would be lovely to take him to one of his favourite places to go to…the city centre! This little six year old boy just beams with delight at the very mention of going on a train. How could I resist that smile?

He had it all planned. He has me trained.This is the routine he always does and nothing changes in his wonderful world of classic autism. We go by train to one particular station, we get off and enjoy the escalators and then turn and go into an indoor shopping centre. From there we press every button for every lift, flapping wildly in delight at the thought the doors will open any minute and we visit every floor that every lift has before finally ending up at the food court where he has me knowing to purchase the same meal he always has and sits in the same seating area he always likes. He then spends an inordinate amount of time laughing and clapping at the hand dryers in the bathrooms before running with gusto to the most expensive, prestigious toy shop in town. imageHe knows exactly what he is looking for and I know exactly where he is headed. He bypasses without even a second glance the high prices teddy bears and Lego sets and remote control cars. He hurries past the jigsaws and dolls and the toy animals. He has one place in mind and one place only…he is heading for the lift!

I never have worked out quite what is so wonderful about this particular lift. After watching it for hours at a time you really would think I would have figured this out but I just can’t. But this lift gives me him so much pleasure, more than any toy in the entire shops ever could. He watches the numbers, gets excited at the doors opening and finds great amusement in just looking at it. The total highlight of his trip. In fact until today I wasn’t even sure if he even realised he was in a toy shop.

Can you imagine a six year old not realising they were in a toy shop? Can you imagine a six year old surrounded by more toys than Santa’s grotto and not begging their parents with those four words every parent usually dreads: image‘mummy can I have…’. It is just days until this boy’s seventh birthday and yet he has never once said those words. He has never asked for anything in a shop or even really played with toys. He has no concept of Lego or toy cars and has no ability to read a book. He can not kick a ball and has no understanding what dress up pretend play is. For almost seven years he has been caught up entirely in his own world of sensory play preferring a bowl of water, pressing a hand dryer to turn it on or endlessly watching lifts either in real life or on you tube.

So can you imagine my shock, my amazement, and my emotions when all of a sudden my almost seven year old turned away from the lift for the very first time and looked over at a display of toys! As if the looking wasn’t enough he casually wandered over and decided to ‘play’ with the toys!

Did you hear me…HE PLAYED WITH A TOY! This is epic! This is breakthrough! He suddenly woke to the fact there was a world besides lifts! And he touched a toy in a toy shop!

I scooped him up and kissed him and gave him a high five! I stood there and watched with tears in my eyes! Then without looking so much at a single price tag I grabbed every single toy he had touched and took my son and his array of newly found interests to the cash register!

imageOn the train home something just as amazing happened. It was like all his disabilities left my baby for a few hours and disappeared. It was beautiful. He put his hand inside the bag (he remembered those toys were in the bag!) and he handed me a bag of toy plastic food to open!!
I did not care if that whole carriage got covered in plastic bananas that bag was getting opened! He requested! HE WANTED TO PLAY.

It is so easy to become weary of playing with children. It is so hard to stay patient when they endlessly beg for toys in a toy shop. It is so easy to take speech and play for granted at any age.

Moments like this don’t come to me often. My son has no speech and he has never played with toys. So yes I spent money on plastic toys that were over priced. But you can’t put a price on the miracle I had this week. The miracle that is the simple fact:

HE PLAYED WITH A TOY!

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Would you swap your hand?

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Some years ago I was giving a friend a lift home in my car when she shared some words of wisdom, quite unplanned. She was going through some difficult times but reflected that if life was like a game of cards and we were able to fully see the cards everyone else had in their hands we would always choose to keep our own hand we had been dealt with.

There have been times I have felt unsure about that thought, feeling hard done by or feeling I have been given a raw deal in life and the idea of swapping with someone else, whose hand seems so much easier, appealed greatly. We all have times when the grass always looks greener on the other side. We look at the smile on others faces and assume the hand they have is easy and they are going to win. We read status after status on social media and assume everyone has a wonderful life because this is how they choose to paint it. Many have mastered their poker face. Years of playing the game has convinced them there is advantages to hiding their pain and smiling through difficult times. But what if you had the ability to see the full hand they had been dealt with? The chances are you would look at your own hand with a new perspective and appreciation.

There have been times I have wanted to lay my hand down and quit. As my children received diagnosis after diagnosis, my home got repossessed, appointments mounted up and nights were never-ending, quitting seemed so much easier than playing on. My ‘losing’ appearing so much worse by seeing others ‘winning’. But the fact is while you still have cards in your hand you have everything to play for. For a season I just needed to concentrate on the hands I had: the beautiful children I got to kiss each night, the roof above my head, the food on my table. A few special cards can mean so much more than a pile of insignificant ones. Used strategically and carefully any hand can be amazing for the right player.

There have been times my hand has seemed huge. I have felt blessed by friends around me, my marriage has seemed strong and my cupboards have overflowed with abundance . Many have looked at me with respect or jealousy thinking I have it altogether. They have wanted to swap hands with me thinking life must be easy for me. They have looked at things from the surface seeing only what looks like blessings. They see a new car in my drive, they see children’s toys in my garden and they see my children with expensive technology. It all looks fantastic. They think my life must be effortless. They perhaps don’t know about the times I looked on them the same way with those similar feelings. Because they are not able to see my full hand they may not know that the car is leased through a scheme for the disabled because of my child’s complex medical and developmental needs. They may not know that my son carries an iPad around with him as it is his only form of communication because he is totally non-verbal.They wonder how I can afford to stay at home instead of ‘working’ without realising my job as a carer may be unseen but it is extremely intense both day and night.

Other times it can all seem quite equal. The dealer deals the same amount of cards to everyone and the game is anyone’s call. But as each player sees the hand they have been given and does their best to turn it into a winning hand it is important to always look at your own hand as important, beautiful and worthy. Even the humble ‘2’ can become a winner to the right player. It is all about how it is played that counts.

Wether you are playing the hand of a single parent, raising children with disabilities, wrestling with health issues or struggling with huge responsibilities of caring or debt, always remember that if you had the ability to fully see the hand that others are carrying you would realise that, in fact, the hand you have is the very one you can handle. You have that hand for a reason.

I don’t know your hand in life. I don’t know your struggles or you talents and gifts. But I have faith in every one of you. I have faith you can take that hand you have and win the game. You can become a gifted player in life no matter what hand you have been dealt. Just keep playing.

Do you fancy swapping your hand? Just remember everyone is fighting battles we do not know. The other hands may not be all they seem. And if you had the ability to see everyone’s hands the chances are you would always take your own back. So keep your hand and use it to win. However long you get to play, play it well.
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Focussing on the little things

One of the many ironies about having children with autism is the fact I have so many big things to worry about as a parent but they are way more concerned with the details of the little things! They worry about the  feel of things, how the straight lines look from every angle imaginable, how the wheels spin, how things look lined up, how a certain part of the dvd sounds, what a certain piece of food tastes like or how some bubbles stay as bubbles when they land on water. While I worry about will they ever get out of nappies, will Isaac ever learn to speak, will we ever get rid of the dummies and the baby bottles, will they ever have friends?

There are so many ‘big’ things I could dwell on right now. Concerns about the fact the twins are almost 5 and neither is out of nappies, concerns about where my daughter will go to school next year, concerns about whether my son will ever talk. While so many parents around the world are beginning to think of Christmas and Halloween and fireworks or Thanksgiving, my focus is still on getting through another day. I could easily become overwhelmed by thoughts of how I get my son to stop eating his clothes when all 9 of his school jumpers now have cuffs that look like the jumper has been mauled by a wild animal. I could be overwhelmed with thoughts of how I get my children to ever have friends, or simply initiate contact with another child. Or how I prevent my son from wandering off every time we are out, or screaming when traffic lights are on stop, or biting himself. It could all just become too much so easily.

So I’m focussing on the little things. Just exactly like my children do! I’m allowing them to teach me the joys of simply taking a day at a time and enjoying life. My son’s only thoughts of Christmas so far is the joy of sitting in a ball pool feeling tinsel.

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His idea of toilet training is tearing up the toilet roll into little bits and having fun with it:

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He is delightfully happy. He isn’t worrying about not being able to speak, or still being in nappies at almost 5. He has no concept of the fact the school he attends is for children with severe learning difficulties. All he knows is the jumpers taste great! And they feed him lunch and he gets to go swimming and play outside and someone is there to help him when he falls over. Life for him is simple. But that simplicity gives me hope.

Because in all his struggles, in all his delay and in all the complexity of his needs he is showing incredible progress. Which when I focussed on the ‘big’ things I hadn’t really noticed how the little things were really improving. Like the day he came home from school and saw his sister playing with her train set.

train set

And this was what he always did to it:

broken train

That was no little thing to his twin sister! It doesn’t matter that both my twins have autism in moments like this. Autism might explain why one likes everything ‘just so’ and set up so lovely and the other likes the sensory play of knocking the track pieces together. But even without autism, these are two children who will not always agree or want to play games the same way. And any parent with more than one child will know the difficulties in balancing both children’s needs at times. I could easily have felt despair at this, fearing my daughter will never get to trust another child playing beside her, fearing my son will never learn to not destroy and take everything apart, fearing my children will never know the joys of playing together. Those ‘big’ worries overtaking me once again. All I could do was distract one child and hope for the best. Another day. Another compromise. Another prayer said.

But then the following day when he came home from school and once again the beloved train set was set up..

He climbed off the sofa, he knelt on the floor…and he pushed a train on the track for the first time ever!!!

train play

And that’s when a little thing really does become a BIG thing! After 5 long years of solitary sensory play, just enjoying the feel and touch of things and seeing how they look scanned across his eye line. After over a year of watching his sister playing with the same train set, he finally worked out how to play with it appropriately! I could have been so focused on cooking a meal, or cleaning up, or endless other tasks us mums seem to have to do on a daily basis. But I decided to focus on the little things and caught a beautiful moment in time.

A few days later I caught him again with another of his sister’s toys (because he has not seen his own toys being played ‘properly’ he has no idea how they should be played with, so is learning play through watching his sister play with her things) picking up a little person and putting them down the water slide:

playmobil

A few weeks ago it was questionable whether Isaac was even able to see the pieces in a toy so delicate and small. But he has once again proved us so wrong. He even knew the difference between a plastic tree and a plastic person!

Meanwhile his beautiful sister is proving that autism will not stop her either as she set about painting so wonderfully within the lines:

painting

and then brought tears to my eyes when she showed me something she had written:

name

This is getting dated and framed and treasured. Aged 4 years, 11 months and 6 days, my beautiful and ever so clever daughter wrote her name for the first time!

A little piece of writing. But a massive milestone.

When I worry about their other milestones, when I have serious concerns about what the future holds for them, when I get stressed about whether I can be all they need me to be to help them be the best they can be, when the big things become all too consuming, I am going to look at the little details just like my children do. I am going to hold this first piece of writing by my daughter, treasure the photo of my son pushing a little train on a track for the first time, dwell on the little noises my son makes daily that one day may turn to words. And enjoy life just like they do.

And leave the rest of the big things to God.

There is something to be said about focussing on the little things and letting God take care of the big things.  And not worrying.

“Therefore, do not worry about tomorrow, for tomorrow will worry about itself.Each day has enough trouble of its own.” Matt 6:34

Remind me of that one when we are in the midst of toilet training later this week or stressing over what school Naomi should go to next year please!

What is there to worry about when you have trains to play with eh!

http://www.youtube.com/watch?v=IpeU612ku-Q&feature=youtu.be

Just Watching

Sometimes as a parent the best thing you can do is just watch. Take a step back and not always lead the play. Just be there and watch. It is so beautiful and makes me so proud just watching my children. Sometimes I watch them quietly playing, or engrossed in a dvd or splashing in the bath. Even the simplicity of watching them eat makes me smile so much. I’ve loved watching them and looking at them and savouring every minute of their presence since the moment I set eyes on them over 4 years ago now. I watch them and cry. Watch them and smile. Watch them and feel so utterly blessed. Watch them with pride and joy. And sometimes watch a miracle unfold right in front of my eyes.

By just watching I saw Isaac do something utterly amazing last Sunday.

I had taken the children along to a church service and brought with us the usual loads of toys, snacks, nappies, wipes, in fact pretty much everything two 4 year olds could possible need for a few hours. Including the portable dvd player! I set up a space at the side and set up their beloved Peppa Pig dvd playing very low and spread some toys out before them. I was enjoying the church but was also carefully watching my children too. Some of the toys were related to Peppa Pig as Naomi likes to often reenact parts of the dvd in her play. Pretty normal four year old stuff. But Isaac has classic autism. He is nonverbal and has severe learning difficulties and global developmental delay. He is more like 2 than 4 and a half. He normally eats Naomi’s Peppa Pig figures or scans the toys across his eye line. But as I stood watching him that Sunday evening he picked up a few figures and used one to pretend to climb the stairs of a toy slide and then slid the figure down the slide. He then repeated it a few times with some of the other figures. I wanted to scream from the highest rooftop I could find. I wanted to dance with joy. I had just watched my child for the first time ever in his life use a toy appropriately! He knew the toy represented a slide and he knew what the figures were supposed to do. He had watched clips of them doing it so often on his dvd, he had even used a slide many times himself but up until that moment he had never reenacted anything he had seen before or used a toy for it’s intended purpose. His special moment lasted barely a minute before he started to once again chew the slide and figures. He hasn’t suddenly discovered how to use all his toys for their intended purpose or stopped chewing and biting everything he sees but I watched him do something amazing and I will keep watching him and encouraging him and playing with him until I see things like this more often. I’m watching out for more progress.

Naomi doesn’t like to be watched though so I sometimes have to be sneaky. She is incredibly self conscious and has a sensitive nature. She gets distressed if I watch her make a mistake. I would love to watch her reading books to herself and retelling stories we have read together at bedtime so often. But she freezes up and gets distressed at this so I watch from a distance and enjoy hearing her voice from afar or listening to her through the baby monitor. She has the sweetest voice and is such a natural storyteller.

But Naomi gets great enjoyment from watching other people. Her nursery comment regularly that rather than join in activities she prefers to stand aside and watch. She learns so much from watching others at play, watching the teachers explaining things and watching others join in games. Social interaction of any sort is a real struggle for her and she needs that time to watch how others play together to learn the social skills that other children gain so naturally. She loves watching people. But then again so do I.

I love watching other parents fighting for their children and winning battles. I love watching parents just enjoying their children and grandchildren at parks and swimming and soft plays and having fun. I love watching children laughing, joking and playing in the warm sunshine. I love seeing couples so in love strolling hand in hand. I love seeing older people sitting on park benches remembering precious memories. I love watching mums with their young babies, fathers kicking balls with their sons, neighbours talking to each other over fences. I love seeing people happy. I enjoy just watching.

I am getting so much comfort from the fact God is watching me too. He loves watching me and savouring every moment of my presence the exact same as I do with my children. He watches over me and cries. He watches over me and smiles. He watches over me with pride and joy. He watches me to teach me and instruct me. He loves watching me because I am his child and he loves me. Like I am with my children he just loves to watch me and listen out for me.

“The eyes of the Lord are on the righteous, and his ears are attentive to their cry” Psalm 34:15

I love just watching moments like this with my precious children:
sand pit