Musical beds

It’s 4am here, and I’m just letting you all know that I am currently winning the game of musical beds which is being played out in my house.

The poor hubby is on the sofa after loosing his place to one munchkin, the second arrived soon afterwards wanting to snuggle across my feet.

So now I’m in the loft (kid’s bedroom) on my own with my I-pad,

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It’s big and spacious and cool and quiet up here, except for the sound of rain on the roof which I really love.

I find it hard to take the kids back to their beds when the come wondering because firstly i’m normally in such a deep sleep that I don’t notice them until its too late. And secondly I kind of think that they are going to grow up so fast that very soon they won’t want to come snuggling in our bed and ill miss that when the time comes.

So normally I count my blessings and let them snuggle, but tonight the constant tickling of Lillie’s hair on my feet combined with Charlie’s knees in my back were just too much to take.

So here I am in a peaceful and quiet place, sharing my thoughts with you, until someone notices I’m missing and comes looking for me….

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That’s why I fear (love) IKEA

If you have ever been to IKEA and never heard this song, listen now

“I fear Ikea” by the Lancashire Hotpots

Go on, I promise it will make you smile. It will really… I have put the lyrics at the end of the post for those who are not from the north of England and might struggle with the accent.

The first Ikea in the UK was built just 20 minutes drive from our house, 26 years ago in 1987. Ikea originally wanted to open near London, but chose this location because the Warrington and Runcorn Development corporation invited the retailer to be part of its regeneration plans for the area. So we have pretty much grown up with Ikea and Ikea furniture as part of life.

Ikea is a great day out for kids, there is loads of cheap food, places to play and run around like crazy little monkeys, Its almost entirely indoors, which is very important in the north of England where it rains 6 months of the year. And best of all because they don’t actually sell their display furniture the staff never ever ever complain if your little monkey decides to climb all over it. It’s like one enormous playground.

They even sell ice cream strategically placed right after the check out tills, so just as the kids are really starting to lose the plot there is something to bribe them with “Just 5 more minutes, let mummy just pay for this stuff (that I never intended to buy, but couldn’t help myself) and I will get you one of those lovely ice-creams”

Whoever came up with a business plan that involves an ice cream bribe is a genius.

Last year, the day after we saw the paediatrician to get Charlie’s ASD evaluation started, I was feeling pretty miserable, and insecure. It was half term so I was looking for something to do to entertain the kids, cheer me up, pass the time and maybe, just maybe some retail therapy – no I didn’t just say that!

It was the first time we had been to IKEA since Charlie’s 3rd birthday, and so he was finally old enough to be able to stay in the supervised play area. I knew he wanted to do it, and dear God i needed that 45 minutes to sit and have a coffee on my own (Of course the coffee is free, with your family card – because Ikea is actually the best shop on earth).

He was with his sister Lillie and so I knew that there was a good chance that he would make it in there and be able to stay with out me. It was early in the morning so the place was still quiet and although at the time we hadn’t heard the words sensory overload we had seen the results of too much sensory input enough times to know that early mornings in quieter places were easier.

We were there for the first session, and I took the kids up to Lillie-bay the staffed play area, which I found out later is actually managed by Premier Creche services.  While I was dropping them off and registering their details, the lady asked me if either of them had any special needs or allergies etc. I took a deep breath and explained “he is probably autistic and is currently in the diagnosis process”. These are really scary words to say, and this was the first person outside of my close inner circle I had ever said them too. Insecure and vulnerable does not even cover how I was feeling in that moment.

Things really could have gone either way, But the lady’s response was perfect, I could not have asked for anything better.  I wrote later that I was stunned how wonderful she was, she could not have been more helpful. I was offered many reassurances that they would pay him close attention, she asked about his sensitivities especially to loud sudden noises. On that day at that time she was absolutely my angel. The right person in the right place at the right time. As a bonus she even gave me a direct phone number so that next time i can call and PRE-BOOK him a place. Oh and the best bit is that both the kids stayed for the full 45 minutes and I got to have my coffee.

When I got home I posted this on a Facebook page related to autism

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Over the next 2 weeks, every time I looked at my Facebook account someone else had liked the story, or commented, almost 99% of the comments were positive. In the end there were over 11 thousand likes. The manager of Ikea called me to say thank you.

We have been back to ikea lots of times with both kids, here are some of our best moments.

IKEA 1

IKEA 6

Oh and Yes and this is Tactile defensive boy getting his face painted, he wanted to have a go but the first time he struggled with waiting in line and having it on his face, so we asked the artist to paint a small spider onto his hand where he could see it. Later we bought some face paints at home and let him try it on himself, one day he allowed his sister to put some on his face, and we went on from there, its hard for him but he is motivated and will try his best to sit for the artist.

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IKEA 4

IKEA 5

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Ikea 8

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Something that I already knew but which we need reminding over over and over again is this…People Really really, love a good news story, far more than complaints. If you have something encouraging to say, speak out, someone needs to hear it today.

The Song Lyrics…

Now let me tell of a shop that fills me with dread,

It’s blue and it’s yellow but I always see red

It’s a furniture store that makes me want to shout’

Cos once you’ve entered, you can’t find your way out!

That’s why I fear Ikea I won’t go there again I don’t want a bookcase called Billy Or a table called Sven

Just don’t go of a Satdee if you don’t want fer queue

And that doesn’t include th’hour sat on’t M62

If you go of a Wednesday, well it just makes you laugh

It’s the size of Belgium but there’s no bloody staff!

That’s why I fear Ikea I won’t go there again I don’t want a bookcase called Billy Or a table called Sven

It’s a good 10 mile walk if you just want a shelf.

Hang on, you want me to go in th’ warehouse and pick it meself?

Well I struggled wi’ trolley I didn’t get very far

And the boxes were that big they didn’t fit in the car!

That’s why I fear Ikea I won’t go there again I don’t want a bookcase called Billy Or a table called Sven

Michael Palin he’s traveled the world once or twice

They said ‘Why don’t you explore Ikea Michael? That’d be nice’

Well the men at the Beeb must have been off their heads

He went missing a week ago between kitchens and beds!

That’s why I fear Ikea I won’t go there again I don’t want a bookcase called Billy Or a table called Sven

Nice hot dogs though…

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Master yoda has ear defenders too!

Driving along the road today Charlie noticed this poster and got really excited, he still hasn’t quite got the hang of pointing things out with your finger as most typical kids do so it took me a while to see what it was he was so excited to show me.

Look mummy “Master yoda has ear defenders too!”

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Before we got married, and right up until the kids came along there were two places that the hubby and I loved to spend most of our time the church and the cinema. Yeah I know, not exactly the wildest places to go, but we were happy.

When Lillie was born we pretty much carried on as we had before with church, and as she was old enough we would introduce her to the cinema. We had no plans to change the way we lived but once charlie came along things changed dramatically.

Every cinema trip was a disaster, Lillie would watch the film Charlie would do his best to escape, we had no idea why, We couldn’t leave because Lillie would cry, we couldn’t stay because Charlie would cry, or run or want to disappear up inside my top. There was no way on this earth that one adult could take the two children alone, it just wasn’t safe enough with them both going in opposite directions.

It wasn’t long before we found that every sunday morning was beginning to follow the same pattern as the cinema. Not being able to manage in church was a far worse problem for us than the cinema thing because thats where most of our friends were. Having a child who couldn’t manage to get through a sunday morning meant some serious social isolation was headed our way.

This time last year, after we had walked out of yet another church service in tears. We were lost and confused and praying that God would give us some insight as to what the hell was going on and how we could make things easier.

Then one day the answer came, I came across a book which changed my life, It was old and tatty and kind of out of date, there are now newer versions with more up to date information,  but this is the book that I will remember forever, this is the book that finally held the answers we had spent four years looking for.

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The book explained how the problems that we were seeing with the eating were related to all of the other things that we didn’t understand.  It explained how not wanting to have his head touched was related to not wanting to wear socks in the car, which was related to not being able to cope with loud noises and on and on and on…

Suddenly it all started to come into focus.

Suddenly we had a way forward,

Suddenly there was hope.

Lots of you will have seen my kids sporting their ear defenders. This was one of the first and simplest changes we made, and one that has had the biggest impact on our ability to go out and have fun as a family.

Today is the first day of half term, this morning we went to the cinema and bowling alley, neither of these activities would have been imaginable without the ear defenders. Lillie doesn’t need hers as much as Charlie, but to keep things even we carry 2 pairs, they both wore them, the whole time, they were happy and comfortable and the whole trip was so easy.

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Later in the afternoon we popped out to the shops, we were only going for milk so we didn’t take the ear defenders with us, when an ambulance came past both kids stopped and covered their ears, they waited for the ambulance to pass, I waited for them to be ready and then we all carried on as if nothing had happened, no fussing, no crying, no meltdowns.

They are learning how to self-regulate, this is progress.

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Most cinemas now do autism friendly screenings, which is wonderful and so important, but we love to have the flexibility to be able to go where we want to when we want to, with only a few small adaptations so that our kids can be part of the fun too.

I’m going to cut the pumpkin…

Last night I was feeling fairly down about the amount of feeding therapy we have been, or rather haven’t been doing since the summer. We had made some progress during the holidays when we were seeing a friend once a week but since school started, the transition to the new routine and the end of the support we had has meant that we have all but stopped trying.

Charlie’s therapist messaged me, as part of the message she suggested a scooter board activity involving food. I cried – as you do!  As much as I knew she was right my heart sank, its hard to climb this mountain, some days it feels like its too hard.

But today is a new day…and a new chance to start again,

This morning Charlie was up bright and early, sometime around 5.30am, he got into our bed to snuggle as he does most days, by 6am I had given up any hope of ever getting back to sleep and so I decided to get up and go hunt for coffee. When we got downstairs I had the coffee first of course, and we played scooter board with plastic food. Because plastic food is easier than real food, It takes far less courage. Charlie made me some pretend coffee and we ate some plastic peas together.

When the game was finished he wandered into the conservatory and spotted the pumpkin I had bought yesterday.

Right out of the blue he said this…

“Mummy, I’m going to have the pumpkin and cut it and then I’m going to eat it!”

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with that he reached out and touched the pumpkin – this is not a small thing, any interaction with food is massive progress, I moved it closer to him and he hugged it.

Later on after swimming he worked with daddy to carve the pumpkin up, we gave him a butter knife and he helped daddy, hand over hand to cut the pumpkin into slices with daddy holding the sharp knife.

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This is my favourite…

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Later Daddy baked the pumpkin slices and the rest of us ate them,

Charlie didn’t and that’s ok, because from here from our new place, all interaction with food is progress and is a tiny little step on the road towards eating.
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The Letter. Not getting enough help (part 2)

Back in May of this year 2 months after Charlie was diagnosed when I realised what the gaping hole was like after diagnosis. The big huge hole that is wanting for us, full of all the empty promises of help and support which we had heard over many years.

When it finally dawned on me that NO getting a diagnosis was not the key to finally getting the help we had been asking for since he was born. And no it was not the fault of all the professionals who had made the promises to us. I still to this day think that most of them genuinely believe that once you have a diagnosis you will automatically get some help or support. That something or someone will be there to catch you.

I had spoken to both Charlie’s paediatrician and Neighbourhood Early Years Service (NEYS) asking where the help and support was that we had been waiting for for so long and they had both begged me to complain, the problem was that I didn’t even know who to complain to.

In the end when I was at work one day, after having had a conversation with the paediatrician I completely lost it, I lost my calm, I lost my fight, I lost the mask i had been carrying around with me, I lost all pretence that everything was ok and I just broke down and cried.

I am blessed at work to have really great colleagues, these people, the volunteers and staff at the charity where I work are amongst my closest friends and my best support group. My manager is an amazing man and truly one of the best people I have ever had the privilege of working alongside, he is hardworking, sensible and compassionate. He is the kind of person who you can count on to come up with a fresh idea that is both helpful and useful. He suggested that I write to my MP and try to flag up to him how difficult the situation is.

So Instead of working that afternoon I sat at my work computer and banged out the letter below. I sent copies to my MP and also to anyone else I thought needed to know. The people who had been involved in the diagnosis process, the clinical commissioning group, healthwatch, and the people who had begged me to speak out the paediatrician and NEYS.

I have put a copy of the letter at the end of this blog.

Pen-paper-writing

Yesterday afternoon there was a market place type event on in liverpool football ground which was supposed to be for parents and carers of disabled children, the city council had put it on for people who provide services for children to give out information. They had obviously advertised it very poorly as once again, they were all really surprised that I was a parent! Apparently I was only the 4th parent they had seen all day.

Anyway I did my networking thing and I have managed to get hold of and speak to a woman called Sarah who is the commissioner for children’s services in liverpool city council. I told her how frustrated I was with how poor the services are and how annoyed I am that we still can’t access any help.

Sarah introduced me to the lady from NEYS, as soon as I said my name she knew who I was, she said “oh you’re the mum who wrote the letter that made everyone in our office cry!” She thanked me for writing the letter and told me that she was so sad that so little has changed since her own children were small. Her daughter is 22 and only just got a diagnosis and still struggles to access any help for her.

She gave me some numbers to call, and some more ideas on how to access help, she gave me a big hug and assured me that I was doing the right thing in the right way.

24/5/13

Dear Mr Twig

I am writing to you today, as one of your constituents to raise my concerns about the level of support and early intervention available in Liverpool to children who are diagnosed with Autistic spectrum disorder. ASD is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them. It is a neurological condition which is sometimes referred to as Autism or Asperger’s.

My son Charlie was diagnosed in March 2013 with ASD, the reason we were referred for diagnosis is that Charlie has had many problems with eating since birth. We have over the last 4 years been passed from pillar to post seeking help and early intervention for Charlie. We have attended many appointments and clinics, we have been given lots of advice which we have done our very best to implement  on each occasion we have asked for therapists to work directly with Charlie through play therapy/ occupational therapy / systemized desensitization however we have always been told that none of these therapies are available to us. We have attended parenting courses and support groups but we have never been able to access any direct help for Charlie.

Charlie was diagnosed at a panel meeting on 13/3/13, we were told of his diagnosis over the telephone, and a week later collected a letter from a speech therapist. We were not offered any support or counselling with the diagnosis. Whilst the speech therapist was very sweet, caring and concerned for our welfare I do not feel that she is the most suitably qualified person to deliver this kind of news to parents or that the best way to give such an important piece of information is in a telephone call. The diagnosis letter was extremely vague with very little in the way of advice or information included and nothing specifically related to eating. We were told that we would be contacted by the ASD pathway and that now we had a diagnosis we would be given more priority to access their training courses. The speech therapist later met with us to give us some information and advice she has found related to eating, but still no offer of any direct help for Charlie.

A month later we had still heard nothing from the ASD pathway, when I called them we were told that they had not received Charlie’s diagnosis letter, that they had no knowledge of Charlie and that his name was not on their database. I then contacted the speech therapy department myself to organise for the ASD pathway to have a copy of Charlie’s Diagnosis letter. When I spoke to Dr W Charlie’s paediatrician from Alder Hey (the children’s hospital) yesterday she was unaware of Charlie’s diagnosis, and did not have even his diagnosis letter in her file, I find it totally inappropriate that I should be telling my son’s paediatrician of his diagnosis and not the other way around.

We have in the last 2 weeks been contacted by the ASD pathway to inform us that the next available training courses for parents won’t start until September, more than a year since Charlie was referred. We were told that the courses are oversubscribed; we are not guaranteed a place on the course and that if we don’t call on the day that we are told about the course to book places then most likely they will all be gone and we will have to wait again. I asked the lady from the pathway about access to early intervention therapies for Charlie and she has told me that there are non-available.

The diagnosis letter stated that “A copy of the ASD Pathway information pack to be sent to the family” If such a pack exists we have still not received it, the only thing we have had from the pathway is a letter about their training courses, and a list of their drop in times.

We have asked the school which is a sure start Children’s Centre, to give Charlie support, however we are told that they do not have the resources to give him any additional help or support, he gets to spend only 5 minutes a day with 1:1 support the same as all of the other typically developing children in his class. As far as I can tell this is really not enough to make any noticeable difference for him. Charlie was placed in the nursery school with a play plan to help him with his eating and for the last 2 years he has made no progress in this area.

We are unclear as to how Charlie is developing educationally. We were lead to believe that it is standard procedure for a child to be assessed by an educational psychologist as part of the diagnosis process, however Charlie was not even seen by an educational psychologist as part of his diagnosis, and is not currently waiting to be seen which means that we have absolutely no idea where he is up to educationally or where we should best direct our limited resources to help him. Charlie’s diagnosis was made by a panel of people who had never even met him.

I feel so frustrated and let down by the way we have been treated, being passed around and referred from one person to another. That Charlie’s diagnosis was made without an educational psychologist’s assessment by people who have never spent any time with him, that we have to wait for such a long time before being offered training courses, and that administrative mistakes have caused us to wait even longer than is necessary; for example Charlie’s diagnosis not being sent to the ASD pathway or to his paediatrician. But the thing that is especially frustrating is that there are absolutely no services available for our son to access now that he has a diagnosis.

It is very clear from our personal research that early intervention and access to therapies such as occupational therapy, ABA therapy etc. is the best method for helping children with this condition and ensuring that they have a really good outcome for their lives. Charlie is now 4 years old, the window of opportunity for “early intervention” is closing quickly. I feel sad and let down for my child and for all of the other Liverpool children who without access to early intervention will live with the consequences for the rest of their lives.

Please do not write back to me offering any more information about ASD, advice or support for myself. I know where to get information from; I have been to support groups, I have read many books and researched the subject myself, I have paid to access training courses because I feel that a year wait is totally unacceptable, I have paid to see private occupational therapists as I could not access one through the NHS in Liverpool. I do not need any more information; I specifically want to have a full educational psychologist assessment and report, and access to therapies and to professionals who will work directly with my child. I do not understand why there are no such therapies commissioned in Liverpool. I do not understand why parents are expected to pay for every therapy and intervention out of their own pocket.

Please can you let me know what can do to help me to improve this situation? Are you able to ask questions on my behalf as to why clinical commissioners in Liverpool do not commission services for children with autism, or why it is so hard to access extra support in school?

Many Thanks

Sarah

Parent of Charlie

I will try again tomorrow

Today I tried really hard, so hard I almost took myself out of the game, I tried with the ASD pathway, and with the paediatrician, and with the lady who commissions children’s services in liverpool, I tried with Careline and children’s OT services. I will try again tomorrow…and I will keep trying until something changes.

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thanks Diary of a mom for this encouragement

On a path of self-discovery

There are lots of ways to learn about yourself, to go on a path of self discovery as it were. I’ve learnt the hard way that having kids is a pretty effective way to accelerate self awareness.

In part this is because they learn for your example very quickly and reflect right back at you all your attitudes and imperfections especially those you either didn’t know about or didn’t want to admit that you had.

They speak the way you speak, walk the way you walk, copy the way you sit or stand and even swear the way you swear.

Oh – my -God, I had no idea that OMG was part of my vocabulary until it came out of Lillie’s mouth, crystal clear. How embarrassing? OMG What kind of mother am I? Why did I teach her to say that? How do I un-teach it?

Sentences beginning with “My mummy says…..” fill me with a sense of dread. The thought these my little super spies are out at school all day just waiting to tell everyone about what mummy thinks or does is just plain terrifying.

If you want to know what I am really like – ask my kids, they will tell you the truth – guaranteed. Second thoughts, it’s probably best if you don’t actually do that.

So…one thing that I have always known about myself is that I love to read, I love to research and my new favourite subject is sensory processing. One day as I was reading away trying to find out more about tactile defensiveness so i could better understand Charlie and I came across this in a blog called So Close,

“It was a fascinating workshop. She started off by asking us whether any of us were sensory defensive and two of us put up our hands. She said she can always tell which of the women are sensory defensive by looking at them. Usually no make up (check), hair very short or tied back (check), non-fussy clothes (check) etc.”

OMG does this woman know me?

I never wear makeup if I can help it, I get stressed out if my hair is not tied back and I always try to have my clothes as comfortable as possible. I thought I was just being me. I have reached a point where I am able to be so concerned with being comfortable that I no longer care at all if other people think that I look boring! Actually I don’t think I ever really cared all that much.

The photo below was taken on a family holiday to Tenerife, let me tell you, this is my idea of hell, I don’t like swimming with fish, and I don’t like the idea of little fish nibbling my feet, this for me is absolutely not a relaxing sensory experience.

As it turns out Charlie is not the only member of the family who has some issues with tactile defensiveness.

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