We have come so far…

January is often a time of reflection for me. A new year; a fresh start. As I approach the second anniversary of my blog at the end of this month I have also been reading back at my own journey. I never knew my own writing would make me so emotional. It has brought back memories and when every day seems the same as the next, it has been nice to see that my children have actually progressed, even if it seems we have been stuck at times. And I have come so far.

When I started this blog I never thought that two years later I would still be writing. But here I am.

And as if to prove a point to me, my son chose this very week to suddenly do something he has never let me do before (well not since he was less than a year old). At six years and two months old he let me read a book to him for the first time since he was a baby.

Sometimes pictures speak louder than words:

This was what my twins looked like when I was last able to ready to them both together:

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And this is what they looked like this week when instead of reading to just my daughter I had the privilege of sharing the moment with Isaac too:

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We have come so far!

I also came across an old note I wrote on my Facebook account this week. I wrote it back in October 2012, a month before the children had their fourth birthday and three months prior to me starting blogging. It is a poem I wrote for Isaac and I thought it might be good to share, as even though we are still dealing with nappies and we still have no speech, it shows how far I have come and the picture I posted back then shows how far Isaac has come on too.

I’m sorry son

Dear Isaac,

I’m sorry I reversed the car today
When I know it disturbs you and makes you cry
And instead of offering comfort
I got angry and screamed at you “Why?”

When I carried you into the house
heated your milk, sat in ‘your’ seat
But forgot you won’t drink from a bottle
Just because you had shoes on your feet!

I’m sorry you still can’t speak to me
and today that was driving me mad
Your frustrations at trying to communicate
at the moment are just making me sad

Your sister set up a train set
but you destroyed it and pulled it apart
As she cried in my arms at your actions
I cried with her and just broke my heart

I’m sorry I almost force-fed you
when you refused all the options I’d tried
You were staring into space when I dressed you
But I was still so annoyed when you cried

I’m sorry you can’t look at my face
or respond when I’m calling your name
You’d rather pull out DVD’s
over and over again

I’m sorry you’re still wearing nappies
I didn’t expect it aged 4
I’m sorry you wanted to escape
when the gas man came to the door

My son I need to say sorry
Tomorrow we will both start anew
With patience, understanding, forgiveness
And a promise that I will always love you.

With love,
Mummy x

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We have come so far!

And it isn’t just me. When your child receives a diagnosis of autism, neurofibromatosis type 1, global developmental delay, or anything else for that matter, the entire family has to learn to cope with it. And we don’t all cope in the same way.

I have struggled at times. My husband has struggled at times. But this week I caught a moment on camera that pictures the journey we have all made so well. Here is my precious baby boy in the arms of his daddy flapping and laughing with delight:

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It has been a difficult two years since I began blogging. It has been a challenging six years since the twins were born. But everyday we are making progress. And looking back helps me see that.

My first ever blog was called ‘The journey thus far…’ Now I can look back and say with confidence ‘we have come so far’. And one day I may even be able to sit down with my twins and share some of their own journey with them. I finally have hope that could happen.

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You have no idea how much I needed that!

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It has been a week of all the usual stresses, appointments and lack of sleep that comes with have two special needs children. But right this minute both children are asleep and I have just finished an entire cup of HOT tea. Very much a non event when the children are awake. You have no idea how much I needed that tonight!

This time last week my daughter was still distraught at the ongoing toilet training her nursery were doing. She was crying the second you looked at her, waking in the night with nightmares of being taken to the toilet and believing she was a failure at everything, at the tender age of just 5. I was the one listening to her cries for help, wiping the tears away and trying to give her self esteem the needed boost whist in the background fighting with professionals to support me in realising what this was doing to her. Of course I want my daughter out of nappies but she has to be emotionally, physically and mentally ready for it. And she wasn’t. Finally on the Friday afternoon, after two very long and stressful weeks, I received the phone call that brought the answers to my prayers. It had been decided that she needed a break from toilet training and the programme was now changing from enforcing her to be toilet trained in time for starting mainstream school in 5 months time to ensuring any supports would be in place within the school to support her in this area. When you feel like you are banging your head off a brick wall and getting nowhere it is so emotional to finally know that someone has listened and is implementing change immediately. You have no idea how much I needed that phone call! It was like finally hitting gold when you have been digging in the dark for weeks getting nowhere.

This last week has been the usual leaving soft play early because Isaac is lying on the floor screaming and banging his head because he no longer wants to be there for any 101 reasons he can’t communicate. The usual being pulled away from your dinner that you have just sat down to because he has finished his and wants to drag you to the freezer that he is perfectly able to open on his own but won’t. The usual stripping off, only wearing his red school jumper every day of the week, the high pitched screams because he wants you to type something into google images but you have no idea what. The usual meltdowns whenever you go out because the car went somewhere other than school. The daily eating with his fingers and having food all over his face, clothes and table at 5 years old. The general lack of comprehension, inflexibility, inability to communicate, lack of speech and exhaustion due to lack of sleep. But then I took him to church with me. Just me and him. His sister was ill with an ear infection and dad stayed at home to look after her. This was an invitation for chaos if you ever expected it. Change of car, change of parking space, no mobility buggy as usual, different seats. Was I crazy? Well sometimes you just HAVE to try! He held me hand, walked into church, sat down beside me on a chair like everyone else, and he sat quietly playing his iPad throughout the entire worship until just before the children were dismissed from the service. Granted he thought he should exit via the stage, but I grabbed him in time and he held my hand and walked into creche and stayed without me being called out once. It has taken 5 and a half years to get to this stage. With all the challenges of the week Isaac had no idea how much I needed him to do that that day. Being in church for a service was like having steak for your dinner when you have lived on bread and water for years.

This last week the fridge broke too. While dad set about cleaning, fixing and generally defrosting it all, it meant the entire contents (these things always happen when you have just done a full grocery shop) had to be taken out. While Isaac saw this as an open invitation to ‘help out’ by systematically eating it all, Naomi saw it as a opportunity to line all the food up in lines for us and give me a running commentary on her dads endeavours at fixing the fridge. The unplanned trip to the electrical store of course meant the children needing to open and close every door of every fridge and freezer in sight, only for Naomi to say that none were suitable as not one had any food in for her brother! With medication that needed to remain refrigerated and the constant alert needed to ensure the entire contents was not devoured by Isaac in one sitting, getting a new fridge was somewhat urgent for us. The sales person said he had only two choices of delivery days available left…and one was the very next morning! You have no idea how much I needed to hear that! It was like running a marathon and finally seeing the finish line in sight!

Yesterday we had two hospital appointments in one day. The first brought new information regarding a rare genetic disorder than is in my family. Over twenty years since first hearing of the disorder the gene has now been found and so my blood was taken. Now the wait for more results and very likely genetic testing for both children too. Not the best thing to hear at 9:30am on a Monday morning. The second appointment of the day was a tumour check up for Isaac. His clinic was running over half an hour late. With a severely autistic 5 year old who has just had his routine interrupted by being collected from school early, who is tired, hungry, thirsty and confused as to why he has not been taken home, you know the wait will be a challenge. But we got through it thanks to fluorescent strip lights in the waiting room that he paced up and down staring at and then a short play on his iPad. Then the dreaded transition from the waiting room into the doctors room. But Isaac sat in his buggy and continued on with his game. In the years this doctor has been seeing Isaac regularly she has yet to see him not screaming and self harming. For the first time yesterday she saw him settled, despite the obvious self harming bite marks all over the back of his hands. And even better, his height, weight and general health showed that at present there is no need to be concerned about any of his tumours. Oh doctor, you have no idea how much I needed to hear that. It was like carrying around a heavy backpack for years and suddenly someone lifts it from you. Please let him stay healthy God.

This weekend the twins have respite for a few hours. They love it and the staff love them. You have no idea how much we ALL need this!
I am choosing to dwell on the break from toilet training, the one time Isaac sat in church, the fact we have a new fridge and there was still food here left to go into it when it came, the current stable health of Isaac and the fact he finally saw a doctor without screaming and biting himself. All the other stuff could get me down and I refuse to go there. So I cling onto the positive at all cost…you have no idea how much I need to do that. It is like seeing a rainbow after days of solid rain and realising that finally spring is just around the corner.

“Whatever is lovely, whatever is admirable – if anything is excellent or praiseworthy – think about such things” Phil 3:8

My very hungry caterpillars

He built a small house, called a cocoon, around himself. He stayed inside for more than two weeks. Then he nibbled a hole in the cocoon, pushed his way out and…”

My son has a new favourite book. You have probably guessed by the start of this blog that it is the famous book by Eric Carle called ‘The Very Hungry Caterpillar’. Isaac isn’t able to read yet and isn’t interested in me reading the book to him either, but he sure loves looking at the pictures…especially all the food pictures.

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He loves to grab my hand and put it on the pictures and have me tell him what they all are. The fact he even recognises these pictures as food is remarkable progress. Just two weeks ago he showed interest in a food catalogue with full colour photographs of meals. And we got excited then. Now he can recognise food from just a drawing! The possibilities for communication are now very clear. Like the very hungry caterpillar in his favourite book he is clearly going to be motivated by food. So together with his new speech and language therapist we have come up with this:

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Little photographs of his favourite snacks laminated and tacked onto the place he would usually find them. No longer can he just go and help himself but, like the caterpillar who had to work hard to nibble his way through the cocoon to break free, he is going to have to work hard to give us a visual before receiving his snack reward.

There are so many parallels between both my children and the very hungry caterpillar. I feel like they have both been hidden in a cocoon for almost 5 years. As we approach their fifth birthday they are both starting to nibble free from cocoons that have held them back. Isaac has learnt to point, recognise his favourite logo, climb and slide down a slide all on his own, hold our hand when walking for brief times, turn when his name is called, and even get his socks and shoes when we say we are ‘going car’. The list of words and phrases he understands is growing daily and although there is still no speech he is trying hard to communicate in other ways. He is sharing more and more moments with his sister too. And she is really helping him by naming what he is pointing at for him.

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He has settled well at school and got his first certificate recently for understanding the music that means it is circle time and responding by leaving what he was doing and going to circle time all on his own. When your child has such global developmental delay and classic autism you don’t ever take events like these for granted. Every moment and milestone achieved is an oportunity to celebrate. Every certificate is worth framing:

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Every self-propelled movement of a bike is worth photographing:

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Even if the bike did have to be specially adapted to suit his needs and the pedals removed. He still climbed onto it on his own and pushed it with his feet along the garden. Nibble by nibble he is getting through that cocoon and pushing his way out…

Meanwhile Naomi is learning to relax a little more and smile more.

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She is walking further and talking more everyday. She is finding enjoyment in helping out at home and playing in the garden. She has mastered doing 20 piece jigsaw puzzles on her own, memorized over 30 books, eating a few more different things and enjoying spending time with her family.  She knows her colours, numbers, shapes, can now walk up and down stairs independently and is growing in confidence. Everyday that cocoon is getting nibbled and nibbled away so she can break her way out.

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It doesn’t matter that both my babies have autism. It doesn’t matter that they both have different areas of developmental delay. Or that Isaac has neurofibromatosis type 1. For the last five years I have been feeding them so much. The hungry caterpillar ate chocolate cake, ice-cream, pickle, cheese, salami, lollipop, cherry pie, sausage, cupcake, and watermelon all in one day (too much like Isaac!). My children have had therapy, time, prayer, patience, support, education, love and lots of professionals helping them and it is working. They are no longer little caterpillars anymore (not that they are big and fat mind you, just growing and learning so much). They have stayed inside for a long time now. It felt like Isaac was trapped in his own world for years.

But their time has come now. The hole in that cocoon is now big enough. They have pushed their way out. And look what they have transformed into:

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Beautiful butterflies! Shame they still eat like the very hungry caterpillar though…

He was a beautiful butterfly!”