Happy New Year

Happy new year everyone, and thank you so much for joining us on the incredible journey we have had this year.

We are in a good place and are looking forward to 2014, with far less fear than we felt in our hearts this time last year.

2013 has been a year of ups and downs, but honestly there have been so many best bits and wonderful people whom we have met this year, I don’t even know where to start.

We are incredibly grateful to everyone who has helped and supported us and contributed to making this year so great. For the friends and family who have supported us and prayed for us and with us. For the therapists and teachers who have given us their help, support and encouragement and who have gone above and beyond to help and guide us. And the new friends we have made, especially through the many support groups we have become part of.

We wish you all a happy new year and that you will have a great 2014 full of many blessings and victories

Lots of Love

Sarah, Will, Charlie and Lillie x x x

forest walk

New years walk in the local pine forest, the strange, warm weather made it a good day for eating ice cream.

 

What can you tell me about your child?

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This week we were invited to have a look at an ASD specialist school as part of the process of being assessed for a statement of special educational needs. Whilst we still hold out hope that Charlie will be able to attend the same school as his sister at some point in the future we have to consider that there is a possibility that Charlie may be better off learning in a specialist environment rather than in a mainstream school.

The school was beautiful, and much more peaceful than I was expecting, I was particularly impressed especially by the quality of the older pupils, and their confidence and ability to speak to us and articulate their thoughts, even when I put them on the spot, in front of their teachers asking them questions about what the best and worst things about their school were.

They have a very high staff to pupil ratio, and great facilities for the kids. Also as its virtually impossible to access any statutory early intervention or therapy outside of the school system, then we will have to give this place some serious consideration.

When we arrived we met the headmistress in her office.

As we sat down she asked us to tell her a little about Charlie…

A while back I was given a similar question by a specialist teacher, she asked me “what is Charlie good at?” Looking back, I feel so ashamed to say that the question had stumped me for a few seconds. As parents of special kids we get asked so many times to describe our kids in terms of their diagnosis, difficulties or the challenges that they are facing that these questions, although more emotional, somehow become easier to answer. As we walk this road we become so much more fluent in giving answers about what they can’t do rather than what they can do.

After gathering my thoughts I told her that Charlie was good at paying attention to detail, befriending children who are shy. He is good at building with lego, following rules, making people laugh and using a computer, he can swim like a fish and run for a long time. The list is goes on further, but I wonder how few times do I actually speak it out?

Given the situation on the day and the type of school we were visiting, It would have been easy at this point to start by detailing all of Charlie’s challenges, after all how else would we have got to this point? To this day, and to looking around this school? Maybe she wanted us to justify why we were there, maybe I needed to justify why we were there.

But at that moment I felt a check in my spirit, Charlie is far more than his diagnosis and far more than he challenges we have faced as a family over the last few years.

Suddenly in that moment it was so clear to me that to have started the day by describing him only in terms of his autism would have been selling him short.

So instead I started by telling her how he is cute and funny and bright and confident, how he is super friendly, I talked about the things that he loves, his Lego and ninjas and angry birds. How he is happy and well behaved in school and how is his making great progress with his learning.

Only after I had told her what a great kid he is, and made sure that she knew he would be an asset to her school, I added that he has a diagnosis of ASD and that his main challenges arise from Sensory Processing Disorder, and how he thrives when he is in an environment where is sensory needs are met.

As the morning went to there were plenty of opportunities to talk about autism and how it has affected our lives and how we hope that the school can meet his needs, and offer him the kind of support he is getting in his current placement.

Charlie wasn’t with us on the day, but I know in my heart that if he was and if he had heard me speak he would have felt proud to be himself. Knowing that his autism is a part of how God has created him and that we are proud of all of who he is.

A growing family of furbys

I am pleased to announce that we are now the proud parents of 9 Macdonald’s happy meal furbys, yes I know this is slightly more Furbys than is necessary it appears to be a very fast growing family, and this is the story of how they keep multiplying. 

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Last week Charlie came home from school with a note saying that for their Christmas outing they would be going to a soft play area in the morning, Mcdonald’s for lunch and then to another afternoon activity. I knew he would have a fantastic day. I am finally beginning to relax into the idea that the school he is in is meeting his needs really well. I sent in a note explaining how we normally handle trips to Mcdonalds and telling them that if they were going to handle things differently that they should tell him before getting there what their expectations of Charlie were going to be.

My mum collected Charlie from school that day and texted me to say that there was good news waiting for me. This was the note that came home in his link book.

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This my friends is no small thing, whilst some may disagree that what is in Mcdonald’s chicken nuggets is actually meat, this is the first meat of any kind Charlie has eaten for 4 years. The previous time was the one serving of cottage pie he ate when he was 7 months old. Also this is the first time in his life that he has ever eaten chips.

I was so happy I actually wanted to cry.

So we were left with the question of where to go from here, how to reenforce this progress, and whether or not he would be able to generalise eating with the school staff to eating with his family. We have been told that generalizing is hard for ASD kids, they will learn to do something in one place and then only be able to do it there. But we decided that 2 days later we would have a go anyway, so we returned to McDonald’s and tried to recreate the magic.

I wasn’t holding out much hope that it would work, but I did explain to him that we would expect him to wait for his ice cream until after the Lillie and her cousin had eaten their nuggets.

We bought him his own Happy Meal as we have done a million times before, placed it in front of him and got on with eating our food. He did a great job of ignoring the food, playing with his furby and asking at least 100 times when he would get his ice cream, each time I told him that as soon as the girls finished their food then they would all have ice cream.

I asked him if he would like to try a chip, he said no, I asked if he would like to try a chicken nugget, I got the same answer.

I was kind of disappointed but not at all surprised that he wasn’t able to eat with us. I was right at the point of giving up the game when I looked up at the door and who was walking in but Charlie’s teacher. Not just any teacher but the very one who has been tasked by the Head of the school with working one to one with Charlie on developing his eating.

She looked at him and said casually “Hi, Charlie, are you going to eat your chips now?”

Like magic, just like that, he picked up his chips and started eating them. Like an angel, she and her family sat on the next table to us and she gently encouraged him to eat and he did, he had fun and we even had races to see who could eat their Chicken nugget the fastest.

It was hard to believe my eyes, having not seen him eating these things ever, hard to pitch my praise for him at the right level, and even kind of hard not to want to kiss his teacher. (I didn’t do it, I promise!)

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Today we decided to try again, I figure we need to get to a point where he will eat the food consistently in McDonald’s before we attempt to generalise it to home or another location, to do this we need to give him lots of opportunities to try, hence the growing family of furbys.

We all ordered Chicken Nuggets Happy Meals, even the adults.

Charlie tried the chips but they were too hot and he got upset, so we decided that he could have his ice cream while he waited for them to cool down.

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After the ice cream he was a little reluctant to try the chips so we turned it into a game and played races to see who could eat them the fastest, he loved this idea.

We were drawing quite a lot of attention to ourselves with the cheering, the Staff found it very amusing and when we explained the situation even came along to support him.

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After the chips were eaten and he was struggling to eat a nugget, Lillie was beginning to struggle with the length of time it was taking. Then once again the most wonderful thing happened, and another angel came to our rescue.

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In an effort to encourage Lillie to wait and Charlie to eat the restaurant staff brought out the face paints.

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For a good 20 minutes, while lillie had her face painted Charlie tried so hard to eat his nugget…

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and to reward him for his efforts he had his face painted for free, and Mummy had a Mocha with cream on top!

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And we all brought a Furby home to add to the growing collection.

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Prenatal stress

Warning this one is going to be a tearjerker.

I am writing this because I need to process what happened and tell our story, in the hope that it will all make sense one day.

I have often wondered if prenatal stress causes some of the difficulties Charlie faces in living with ASD and SPD. If it is totally random, completely genetic, or a combination of millions of factors. I wonder if stress caused to the parents whilst the babies tiny brain is developing can cause or at least contribute to these things.

I have searched the internet for research papers in this area and found very little conclusive evidence to sway me in either direction.

Maybe the stress we went through in the pregnancy was simply bad timing or maybe it wasn’t so much the cause of the problems but Gods way of preparing my heart to receive a child with additional needs. Who knows, maybe these things remain hidden from our understanding for a reason.

Both of our pregnancies were planned and we were very blessed to have been able to get pregnant within a few months of deciding that the time was right. During my first pregnancy I was child free and so able to look after myself a little more easily, I could sleep when I needed to even if it was the middle of the day. We were both working and our home was small and affordable. Apart from me being generally hormonal, grumpy, very large and extremely uncomfortable things were fairly straight forward. Unfortunately mid way through the pregnancy we found out the my dad had terminal lung cancer, this was really tough in many ways, I desperately wanted him to get better or at least to be well for long enough to meet our little one, but unfortunately his body was not strong enough to fight the cancer this time.

He had already survived lung cancer 10 years before but that had resulted in him having one of his lungs removed. The intervening years had been a really positive time for the whole family, like a second chance at life for him, and an opportunity for him to rebuild some of the relationships that he had missed out on through years of working long hours on a factory shop floor.

But the first cancer had left his body to weak to hold on to life, as the pregnancy came to an end so did his time with us. During the last week of the pregnancy as I approached my due date he was beginning to lose consciousness, I prayed that he would hold on for long enough to meet his latest grandchild but it wasn’t meant to be.

On the night of my due date I was booked into the hospital for an induction. We had been in the waiting room for a few hours when we realised that there would be no bed available on the induction suite until maybe 3 or 4 am, and so we asked if we could go home and be with my family. We had only left the hospital for a few hours when my mum called to say that he his breathing had slowed and that he had passed away peacefully. So in the middle of the night we drove to my mums house and spent the rest of the early hours together. By the time the hospital did call at 5am to say that my bed was ready and I could still be induced if I wanted to I told them that things had changed and I was going to wait a little longer.

Thanks to Easter weekend and May bank holiday it too almost 10 days to arrange a funeral date. Lillie stayed put both of us growing ever larger. My hands and feet were incredibly swollen, I had outgrown even my largest maternity clothes and by the day of the funeral the only shoes which would go onto my feet were my husbands work boots. The funeral was beautiful and a really special time of family closeness and support. I am sure my dad would have been proud of us especially as the meal afterwards was in a local carvery, one of the only places he enjoyed eating out at.

Although the labour pains started on the morning of the funeral, Lillie finally put in an appearance 3 whole days later when she was delivered by emergency c-section. She was long and thin and managed to weigh in at an incredible 10lb 3 oz.

 

Our pregnancy with Charlie started out in much the same way, I was large and tired and grumpy, and having a 2 year old it was more difficult to take care of myself, but that was to be expected. At our 20 week scan the radiographer was concerned that there was a small cysts developing in his brain, she asked us to come back a week later to have another scan on a better machine with a more senior member of staff. I googled the cysts and learnt that their formation was a normal part of a babies brain development and that their presence didn’t really mean very much at all.

Scan

 

Charlie’s scan with Lillie’s finger, that night she went to bed holding the photo, of her already very much loved sibling.

When we returned for the second scan, the doctor found that there were 6 of these cysts in his brain and also a calcium deposit in his heart. The doctors were very concerned, they also seemed to be quite annoyed with us that we had turned down the blood test for Down syndrome which is offered earlier on in the pregnancy. We explained that even if we found out that the baby had Down’s we would never choose to terminate so we didn’t really see the point in having the test. The doctors continued on saying that they were not just concerned about Down’s but that because of the markers they had seen on the scans, they could now tell us that Charlie had a 1 in 10 chance of having a very serious genetic condition such as Edward’s syndrome which would mean that he would be stillborn or if he did survive the birth that he would die within a few days.

They felt that the wisest thing for us to do would be to have further tests, and an amniocentesis, they impressed on us that it would be important to do this immediately as the window of opportunity for a termination before 24 weeks was very short.

I was shocked, we had already told them that a termination was not an option, even if the baby did turn out to have Edward’s or something similar, that we would continue with the pregnancy. We said that we may consider an amniocentesis later on in the pregnancy if we decided that we did want to have the information before birth but that we would not consider it before 24 weeks for 2 reasons, firstly in the small risk that it could cause a miscarriage and that before 24 weeks the hospital would be powerless to save the child and also we didn’t want to hear anymore about terminations.

I had that horrible feeling of time standing still, the one where you can clearly remember the room and how it looked, where you were sitting, the colour and smell of the place, stupid detail like which posters were on the walls or leaflets on the tables, like it is burnt into my mind. The doctor who was with us (the one with the horrible black boots that are also burnt into my mind for some unknown reason) simply told us to enjoy the rest of our pregnancy and left the room.

I would like to say that I joyfully returned to work and got on with enjoying the rest of my pregnancy and convinced myself that 10% was a really small number, that my faith carried me through without so much as a moment of worry about what it would be like to have a severely disabled child or how I would explain to Lillie that the baby that is coming to live in our house might not actually ever make it home. But that would be a lie, even with lots of faith and a strong support network of family and friends some things are still really hard to carry. Our faith does not shield us from the traumas of this life but it does give us someone to turn to when our strength is failing us.

Within a few weeks of the scan  a second blow came when my maternal grandfather was diagnosed with the exact same cancer that my dad had died of 3 years earlier, it was in the exact same place in his body and I was in the exact same time of my pregnancy.

While I was still wondering how on earth I was going to do all this and still hold things together our landlords gave us notice that they would need us to move out of the house we were living in within a few weeks of the birth and find somewhere else to live.

 

I honestly do not remember how I got through the weeks surrounding christmas and new year, we somehow put in a mortgage application and viewed only one house to buy. We had an amniocentesis at 34 weeks and when the results came back all clear at 36 weeks I fell apart emotionally not really understanding the weight of what I had been carrying around with me.

We packed boxes ready to move house right after the birth, exchanged contracts the day before Charlie’s due date, and completed when he was less than 2 weeks old.

holding hands

 

This photo was taken the day after charlie’s birth, it is an incredibly emotional image for us and we have it blown up as a canvas on our wall. It is Charlie’s tiny new born hand holding onto his great grandfathers, for us it is a miracle that on that day they were both well enough to be able to enjoy eachothers company.

It is a reminder to us of God’s faithfulness no matter what challenges we face. Although we may hold onto his hand with all our strength, like a baby instinctively grabs onto a finger, what we often don’t see is that outside of the frame of the photograph his strong arms are cradling us holding us safely and gently.

 

Back to work

It is so easy to do too much and expect too much of ourselves. Let me confess I often fall head first into this trap.

I have very high expectations of myself, and it is easy, way to easy to push myself so hard that I don’t even know when to stop.

I constantly juggle work, home, kids, church, school, business, finance, neighbours, special needs support groups, charity work, meetings, cleaning, shopping the list goes on and on. I often feel like I have somehow managed to get myself onto a treadmill that can’t be slowed down. I feel like I just have to keep going because if I don’t then… I don’t even know what will happen.

Its important to keep things real, and part of that is acknowledging when things are too much.

Since the summer I have known that I was burnt out and needed a break, but because of the crisis at work, everyone was putting in 110% and it just wasn’t fair or realistic for me to take annual leave. So every day, and for far more days than I should have, I would turn up and keep trying to give my best and to keep up, and every day I was less effective and more overwhelmed.

Until suddenly it was all just a mess.

Why am I sharing this? well because I know I am not the only one who does this, who feels responsible for everything, who takes on too much, who has forgotten how to say “No”. It happens too easily, we take on things one at a time and the world sells us the lie that we can have it all, we can do it all, we can be all things to all men.

That we are supermums who can do the impossible.

Its not true…

I am learning (the hard way) to set boundaries, to know when enough is enough and to stand my ground.

I have had 2 weeks at home, trying to get my head together. I have rearranged my furniture because that always makes me feel better, and I have taken some time to enjoy small things like decorating the tree with the kids, and sharing a meal with our neighbours, and watching a few episodes of Miranda.

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This week I have gone back to work with a clearer mind, and more realistic expectations of myself, I have moved my desk to a quieter and more brightly lit location where I am hoping it will be easier to work, and I have reduced my hours so that I have one guaranteed full day at home every week.

I have to remind myself that it is important to look after me as well. I can’t be a good mother and wife and employee and everything else if I am limping along half exhausted. So once again I am going to give myself a fresh start and attempt to do less.