Cakes and Cinema

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Yesterday we made it out to the cinema. Just Barney and I. He was great about it, as long as I promised constantly that if he couldn’t handle it, we could leave. If he knows there is no ‘get out’ option then he panics a lot more. So knowing that he can leave if he needs to seems to keep him much calmer. Although its not always going to be possible to give him that option. 

He was worried, but not panic stricken. He packed a pink handbag (!!! he insisted on taking it!) with a teddy bear, a torch, and his ear defenders. Having it with him seemed to help. We bought sweets (far too many) and went to see ‘G Force’ – a film about FBI Guinea-pigs, full of guinea-pig action. It was pretty good for a kids film. He used his torch to get in and out of the cinema, and wore his ear defenders the entire time. It worked out pretty well. And it helped that the cinema was pretty low on customers.

Today I had promised to make cakes with him.  He decided late last night that we should make cakes and was very upset when I said it would have to wait till today.  He got very cross about it and insisted he would be making them on his own.  We worked out in the end that he thought I’d forget to make them the following day and that’s what was upsetting him. So when I suggested he make a cake-making reminder picture for me, he was happy and ran off to find his pencils.  He made me a reminder, and this morning Marty went out and bought the ingredients. We made a crown cake and some iced sweety pastries.  I really enjoyed the time in the kitchen with him.

  

A mini day trip

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I have really wanted to make the most of the last week of the summer holidays. The only way to get Barney out of the house at the moment is to give him full control of where and when we go.  So today he planned a trip to Armagh Planetarium, and tomorrow he plans to go to see the new Guinea-pig movie at the cinema. Yesterday he let us take a trip to Sprucefield, to go to just one shop (where I lost my mobile phone, grrr). But to get there we had to promise him that the road trip would not take longer than one Sponge-Bob (eg 15-20 minutes). We had to set an alarm clock to go off twenty minutes from when we left the house, and promised him that if the alarm went off before we got there, we would turn around and come home. 

The planetarium was a bit of a disappointment for us adults, but Barney enjoyed himself. We didn’t see a show as he just wouldn’t enjoy that, so it only took us half an hour to walk round the place. Barney and I made a rocket from a cola bottle and launched it into a field.  He was pleased because his rocket went much further than the other kids did.  But he didn’t like the noise of the rocket launcher, so stood with his fingers in his ears the whole time, looking anxious. We had his ear defenders but he wouldn’t wear them in front of the other kids.

I think after two days at the Kennedy Space Centre, and after watching a real live rocket launch, the Armagh Planetarium was a bit of a come down!   But it was good to get Barney out. Marty and Rosie came too. Jimmie wasn’t interested, and Tarja was on a date with her boyfriend! :S

Barney is getting very worried about going back to school next week. A new class, a new teacher. He is worrying about little things, like ‘will you know where to pick me up after school?’

Here are some cute pictures of Rosie. Just because.  Because she is beautiful, adorable and just totally delicious!

I'mYours

The song we sang at Rosie's naming ceremony, which if you've read the blog at all you will know how much she loves this song. Barney filmed it for us, his own idea. The giggling is because Rosie was dancing, and then helping her big brother ply the bongos.

What is normal anyway?

Since the naming ceremony things have been starting to return to normal. Next week the kids go back to school and life will be back to normal. Not that anything in this house is ever really normal. And if it was I'd be totally bored.

Yesterday we took the 3 youngest kids to Cheeky Monkeys in Newry. How did we manage to get Barney out of the house? Well, we just asked him if he'd like to go anywhere. And that was his choice. But it only took him a millisecond to decide exactly who would be going in his head. I immediately told him that we were all going (minus Jimmie) but he had already imagined that it would be only him and his Dad. So panic ensued within seconds. I had learnt my lesson about making sure he knew exactly what the plan was, but it seems that if the image of what will happen has been in his head for even a moment, then anything that differs from that is a change of plan that he can’t cope with.

Anyway, we made it to Cheeky Monkeys. I asked if Barneys big sister Tarja could go around the soft play area with him, despite her being too tall for their height restrictions. The lady was about to say ‘no’, when I said to her ‘it’s just that he is autistic and gets a bit panicky if he is alone in these places’. She immediately said ‘yes that’s fine’ and didn’t even charge for Tarja. It felt weird saying that he is autistic. I’ve never had to say that before and I felt like a bit of a con artist for some reason.

A good time was had by all. Barney totally wore Tarja out, dragging her everywhere at full speed. The problem was the she couldn’t stand upright inside the play area, so had to run at his speed whilst stooped down! Rosie enjoyed looking at all the bright colours and screaming children, whilst we fed her lunch to her. Everything was going swimmingly until Barney sprained his ankle. A member of staff helped him down to us. The problem wasn’t so much that he had sprained his ankle, but that he expected an ice pack for it. I couldn’t work out why he was so adamant about getting an ice pack until he explained that when he hurt himself at school an ice pack was provided for his nose; and when he hurt himself at the igloo soft play area an ice pack was supplied. So Barney was expecting an ice pack for his wounds. And nothing was going to make him stop shouting until he got one. Once again he expected something to happen a certain way and couldn’t cope when it didn’t. We carried him out to the car and he got home without any serious injuries.

Today I spent half the day making more baby food for Rosie. The last batch had run out, and she’s eating lumpier foods these days. Barney wanted to help, and so he peeled onions, carrots and potatoes for me. I made such a fuss of him for helping. What a great big brother. We made a huge batch of cauliflower cheese with pasta, roast chicken dinner, tomato and veggie stir fry with rice, and bacon and lentil stew. That should keep her going for a while!

We really want to go out tomorrow as a family, but Barney is not keen on it. He wants to go to somewhere that is within Banbridge, so that he doesn’t have to spend so long in the car. The trouble is that there is nothing to do here! I’ve suggested the aquarium and various places but they all involve an unwanted car journey.

Here are a few little piccies that Marty took today. He took little Rosie out for a drive and stopped to feed the swans…

The naming of Emily Rose

Wow! Yesterday was just the most amazing day. It was magical, memorable and very special. Everything went perfectly, without a hitch. I think it was one of the loveliest family occasions we’ve ever held. Marty and I were just delighted with how fabulously it turned out, and completely touched and overcome by everyone’s beautiful wishes and gestures.

To make it even lovelier, my dearest friend from school days came over for the weekend to celebrate with us. It was just so lovely to have her here. Barney totally fell in love with her and talked the ears off her. He is really missing her now that she’s gone.

Everyone put so much effort into making the day run smoothly. My Mum let us use her huge house out in the countryside, which was the perfect location, surrounded by cows, sheep and horses. The kids all enjoyed running around the fields together. My sister Jenny re-iced and decorated Hannah & David’s remaining tier of wedding cake. As always she did an awesome job. Rosie was very impressed with her cake and just wanted to get her hands all over it!

Hannah, Steve and Mum cooked some really tasty food, and others made deserts. I hear Maddi’s

pavlova’s were really nice, and Anna’s buns were delicious, and a real hit with the kids! (And big kids!) Jenny’s girls made a bannoffi which I can testify was just scrumptious! Aunty Maddi made Rosie the best sign which was erected outside so that people knew which house to come to. She put a lot of effort into that sign. So glad I asked her, since I was just going to get an old sheet and some house paint, which wouldn’t have achieved a very classy look! I did make a little display of some of Rosie’s photos and some little things from her life so far… he hospital bracelet, first baby shoes, etc. We put that on the table with the wishes book and charm necklace.

I wanted the ceremony to be quite relaxed and chilled. We had planned to hold it outdoors but we have had such a terrible summer that it was just too wet. But Mum’s living room was big enough for everyone. The family sat in the middle of the room on the two sofa’s and the guests sat around that on chairs. My brother in law, David, ran the ceremony for us and did a great job. He was really personable, and it was lovely to have a member of the family involved like that, rather than a celebrant who none of us knew. It felt more homely and sincere.

The ceremony itself was only about 30 minutes long. David explained what a naming ceremony was and why we wanted to have one. He read out a poem about parenting that I had chosen. Then he asked everyone to come up one by one to add their charms to Rosie’s necklace, starting with her siblings. Badger made several touching wishes for his baby sister, which showed his maturity. He wished her to fulfil any ambitions that she has, to get married and have a family of her own, that she would be smart and beautiful, and that she would live peacefully in the way that she wishes to. Badger’s charm to Rosie was an angel. Tarja’s wish was that her beauty would never fade, and she chose a beautiful black glass bead with pink roses painted onto it. Little Barney said ‘I wish that you would have a happy and a stronger life’ as he placed his pink heart charm onto the necklace. I was so proud that he got up and said it aloud like that. He also took it upon himself to film the entire 30 minutes of service on my camera! That should be some viewing! It was quite funny as when people were saying their wishes etc he kept going up to them real close with the camera and making them giggle.

Every family member got up to say their wish for Rosie and placed on their charms, including me and Marty. Then our friends did the same. If Rosie develops everything that has been wished for her she will grow to be one amazing individual! I was very touched by the different wishes. People had really a put a lot of thought into it.

Marty and I made some promises to Rosie, as did her two guardians and her Grandmother. The guardians, Aunty Maddi and Aunty Hannah, wrote their own promises to her. I was almost in tears when they read them out. They both reflected their own personalities, and they had both clearly spent a lot of time really thinking about how they would like to make a difference in Rosie’s life. Everyone was clearly very moved by their promises. I can’t help but think what a lucky girl Rosie is.

Maddi, Badger and I performed Rosie’s special song. Anyone who reads the blog regularly will know what that is! I sang it with Maddi singing the harmony and playing guitar, and with Badger on the bongos. He did a great job, and Rosie joined in with him at one point as assistant bongo-er, which made everyone laugh. She clearly liked her song and was wriggling away to the rhythm.

All in all the ceremony was, in my opinion, a really moving, precious experience. And it was followed by lots and lots of glorious food, drink and good company! Rosie was a star throughout, despite missing her nap and being totally exhausted. Barney was a happy chappy since his best mate from school came too.

There are lots more photos. I think that you can click the link below to see them (it’s a new blogging feature that I haven’t used before!) I want to say a HUUUUUGE thankyou to everyone who came. Every single person there made it a special event. I personally was deeply moved by everyone’s kindness. Rosie has a beautiful necklace full of memories and a book filled with good wishes that she can treasure for the rest of her life.

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Tomorrow is Rosie’s big day…

Only a few hours until my bestest friend from school, T, comes to stay for the weekend. In an hour we will head off to the airport to pick her up. I am a little over excited to say the least! She hasn’t been over to visit since Badger was about 4 years old. So, that was about ten years ago. Wow.  I have made her up a room over in the west wing. Lol.

Final preparations are in hand for tomorrows party.  I am still learning the words to the song. For some reason that seemed to be the least important thing. The service is written and we have a speaker, yay.  Guests are invited, and some are hopefully going to show up! We have already written our wishes into Rosie’s book.  Tomorrow everyone else will write their wishes into it too.  Dan has taken a drive up to Mums house with a big collage that I made, and with our dining and garden chairs. 

I’m really quite excited about it all now.  And even more excited that dear T will be with us.  I can’t wait to see her.

On other notes, we just discovered a message on the answer phone left after our visit to the behaviour clinic two weeks ago.  It was the psychologist that we saw there. She wanted to let us know that Barney had been referred to the autism specialist/doctor and was on the priority list, so should be seen in under 8 weeks. That’s great news.  Last night was a particularly bad night for Barney. More panic attacks, more not being able to settle at night.  He almost made his Daddy cry when he said in tears, “Daddy, I wish I was just an ordinary boy”.  How sad.  Yesterday I was stroking the back of his neck while he was watching TV. I do that a lot. He said “Mummy, I know you like doing that but it really makes me feel sick.” Then he got upset with himself because he thought it would hurt my feelings. The lady at the behaviour clinic had noticed that he didn’t like people touching him if he couldn’t see it.  I don’t know, he seems to be deteriorating day by day at times. 

Back to school in just over a week could be harder than anticipated.  Sometimes not knowing what to do is just so difficult.

But back to being excited about tomorrow. Yay.

Let's go fishing Daddy

Late this afternoon, whilst Dan and I were relaxing in our bedroom with little Rosie, Barney burst into the room all kitted out in a pair of green peter pan trousers, a white top and a sun hat, carrying a fishing net. " We are going fishing Daddy" he announced, "let's go!"

My first instinct was to tell him that we couldn't all just up and leave at a moments notice because he had decided to. But it was a lovely day and we'd all been cooped up for so long. So we decided to just get up and go. Plus I was delighted that he wanted to actually go somewhere! There was a bit of a panic when he realised we were all going, and not just him and Daddy as he had imagined.

So Daddy and Barney spent some time fishing around the Scarva Park Pond with a fishing net, whilst the girls and I took some photos and kept out of the way for the male bonding. We all walked around the lake, saw some sheep and met a horse. Rosie was very impressed with the horse, as she has never seen one before. She couldn't wait to have a touch of it, and I think she might have thought it was a large dog!

Then we all spent some time in the park. Rosie loves the swings at the moment. All I heard from Barney the entire time was 'Mummy, look a this... Mummy, look at me!" I watched him go around the assault course, and took plenty of photos, as usual. All the photos are available to see here.

I made this into a huge poster for Rosie's naming ceremony. I just love it. Also am getting it printed onto a T-shirt for Barney to wear. Only one week till the big day, and I'm almost organised!

Dadadadadadada, dada, da da

I just found this video on my camera that Tarja took of her baby sister. I had to include it on the blog as it's so cute.

Blog frenzy

I'm having a bit of a blog frenzy here. I'm supposed to be writing the naming ceremony service, but I can't settle into it until I've got everything out of the way. And I realised I had forgotten to blog about our night out to Zen, the Japanese Restaurant in Belfast.

Marty had been there before and always wanted to take me. When my sister offered to babysit he jumped at the chance to get the glad rags on and eat! I loved the menu in Zen. So much fish! And so many exotic choices, not to mention all the sushi and sashimi etc, that I just adore. The food was divine, and so was the company. Since we don't ever eat Japanese food we ordered something different each and then tried each others. Marty had asparagus wrapped in steak, which was mouth wateringly delicious. And I had the Zen special of Monkfish, which I have to say was one of the nicest meals I've ever had. We also had sashimi starters, and a basket of tempura battered bits n bobs. Lol.

I would definitely go there again. If you haven't be - go!

If you are family or are attending our baby naming ceremony, please make sure you scroll down and read the blog post about the charm necklace. Thanks.

I just want to add these gorgeous pictures of Rosie, who is eight months old today! I can't believe it at all. Where has the time gone?

The Tall Ships in Belfast (a day early)

Since Barney seems adamant that he can't face the crowds tomorrow, but really wanted to see some of the tall ships, we went to Belfast today and had a look at the few that were there already. Belfast is going to come to a stand still tomorrow when the whole thing really kicks off! It's such a shame we can't persuade him to watch the ships leaving along the coast on Sunday, as it would be such a spectacular sight.

Anyway, we parked in the Odyssey car park today and walked past all the marquees etc that were being prepared for tomorrows start to the event. There were a handful of ships already docked, and we got to get right up and close to them, which was great for Barney. Rosie was just as delighted as ever to be outdoors, and smiled constantly. Barney went dressed as a pirate for the occasion, and he had such a great time, despite a mild panic attack about going out.

You can see all the photos by clicking here. But here are my favourites. Afterwards we took a trip to Ikea to buy Rosie a cot bumper so that she can stop banging her head and legs during the night!

First Behaviour Support Appointment

This morning we had our first behaviour support appointment for Barney. It was an interesting meeting. Barney had no panics leaving the house, and arrived as calm as anything! He was even excited about it.

The psychologist sat us down in her office and asked Barney why he was there, to which he replied with "to see if I have Aspergers". She seemed surprised by his answer, and I got the impression that she thought 'oh here we go, a set of self diagnosing parents who haven't got a clue'. And I was thinking, 'oh dear, this isn't going to go well'.

Basically the hour was spent with her asking us questions about his behaviour, and us answering them. Occasionally she would ask Barney a question such as 'how do you feel when you have a panic attack?' She wrote copious amounts of notes about every aspect of Barney's behaviour, always stopping to ask him how he felt about things. Barney was very well behaved although he sat with his back to her whenever we were talking.

She suggested a few helpful ideas to try out with him. She suggested that when he is stressed or anxious we don't try to cuddle him, hold him, or touch him in any way as it would be a bit of a sensory overload for him (she had noticed in the meeting that he didn't like being touched if he wasn't expecting it) So she suggested to Barney that when he is feeling panicky, if Rosie is crying or whatever, that he goes out and bounces on the trampoline. She said that bouncing was a great calming tool for autistic children. So we are going to give that a try. She also talked to him about deep breathing, and things that we have already tried.

Well, to cut a long story short, at the end of the session she said that there was no doubt in her mind that Barney obviously did have some form of autistic spectrum disorder. He is being referred to Lurgan Hospital to an autism specialist /paediatrician. It can take up to 13 weeks to be seen, but she said that it would be put through as fast as possible. I asked how long it would take to get a proper diagnosis and she said 'in Barneys case, not long, it seems pretty obvious'. He basically ticks every box.

So he is waiting now for his referral to these people in Lurgan. They will talk to us, talk to his school, come out to the home to see him, go out to the school to see him. She said that she doesn't think it will be a long process to get him diagnosed, and that he will eventually get a statement of special needs for education (I'm not sure what the exact term for that is) so that the schools will have to make allowances for his condition.

I feel greatly relieved that we are at last receiving some help, and that some professionals have now agreed with us that he does indeed have Aspergers. There will be lots of courses and help for us once he is referred, which at this stage we really do need.

I'm not sure whether to be relieved or excited, or nervous!

Today Barney was given an appointment to see the child psychologist at a local clinic. But the appointment wasn't for until the end of September. I spoke to the receptionist on the phone and explained that I was at my wit's end, and didn't know what to do, and that it was breaking my heart to see Barney so desperately anxious all the time.

She called me back later today to say that she had spoken to the psychologist and she wanted to see Barney asap. She is going to see him tomorrow morning! She wants to see both of us and Barney together to start his course of assessment. I am relieved that we are finally going to receive some help. Thank goodness. Barney is actually excited about going. After a major panic attack about going to the shops I asked him why he wasn't also panicking about the appointment. He replied with "because that lady is going to help me."

Days out are becoming a nightmare

6 weeks into the school holidays and I am desperate to get the kids out to a few places. Barney has been waiting all summer for the 'Tall Ships' event in Belfast. As well as that we had planned a trip to the aquarium, a spot of camping (if the weather improves!) and a few other days out.

But now, I'm not quite sure what to do. We have learnt recently that if we spring anything on Barney at the last minute, he goes into complete panic mode and refuses to get in the car. We have to sort of entice him into the car against his will, and drive off with him hyperventilating and thinking that he's going to vomit, until he settles down, after about 5 minutes. So we have been making sure not to spring any surprises on him when at all possible.

We have been told that planning things in advance will help him to cope better. That did work for a while. But now he is even panicking about these things. After begging all summer to go to see the tall ships, he is now panic stricken about it. We were looking at the website details of the event, and he realised that it would be crowded, and suddenly said he couldn't go any more. He just wants me to say "ok, we won't go". But if I say that to everything he will become a hermit!

So I looked into it further and found out that if we find a spot along the coast of Holywood, Bangor or Carrickfergus on Sunday, we can watch the tall ships sailing out of Belfast whilst having a family picnic and avoiding the fun-fairs and attractions. But even this sent him into panic. When I say panic, I mean that he is running around the kitchen, with rapid breathing, begging us not to make him go.

So I questioned him further. If it's not the crowds that are bothering him, what is it? He was now panicking about the car journey there. And the fact that he will spend all day feeling nervous and sick about going out. I can't blame him for being nervous about car travel. After all, he was recently in a car that caught fire! That's enough to make anyone weary of cars. And now he says that he can't go anywhere that he hasn't been before.

What am I supposed to do? I can't let him become a hermit, and yet I feel bad forcing him to go through such anxiety.

We have received a letter from the behaviour clinic and they are going to see him soon to begin his Aspergers Assessment. Lets hope they have some advice that helps, because right now (despite reading so many books and trying my best) I feel totally lost.

Naming Ceremony Idea... please join in...

I am posting this here rather than emailing to everyone as it just seems easier. Today I am busy sorting out the finer details of Rosies naming ceremony which will take place on Saturday 22nd August. Not long to go!

I have had so many ideas of things that we could do to make the day special, and will be using a few of them. But this one needs your immediate attention! So, all family members please take note... (and any friends who would also like to join in are more than welcome, just contact me for our address or bring it on the day).

I want to make Rosie a charm necklace. The idea is that every family member will make a wish/blessing for Rosie's life and will mark it by adding a charm to the necklace during the service. This will mean that Rosie has a beautiful present to commemorate the day, and something that she can treasure for all her life. We would like every family member to try to do this. It only takes a few minutes on ebay and the charms cost between £1 and £5. There is one seller who does them for 99p with free p&p. I will add some links below to get you started.

So you need to chose a charm. It can be something that represents something, or just a nice beautiful colour, its up to you. Then you need to think of your 'blessing' to go with it. Bring the charm and your blessing to the ceremony, where you will add it to the necklace and read out what you wish for Rosie's life. For example you could wish for courage, inspiration, inner beauty, happiness. Whatever is important to you, with a little sentence to go with it.

Now, it needs to be the right sort of charm. It is called a 'Pandora' charm. Otherwise it wont fit on the necklace.

THIS UK seller, sells Pandora charms for 99p with free postage. And he has a huge range to choose from. Here are some examples....

Hopefully, at the end of the ceremony, we will have something that looks like this (but with more charms on)....

This ebay seller also sells the charms for £2.99 buy it now, with free postage.

Alternatively you can just search for Pandora Charm on ebay yourself. There are literally thousands to choose from. Just be careful that if you order if from an International seller, that it has time to arrive.

So please, if every family member could take the time to join in with this, it will make a very special momento of the day and something that Rosie can one day show her own children. There will be charms on it from family and friends who are no longer with us. I'd really love it if you could all join in with this. And once again, anyone else who would like to do so can, by all means.

Day trip to Gosford Forest Park...

Today was a beautiful family day. We took the opportunity to get out for a drive in the sunshine, and took the kiddlies to Gosford Forest Park, a favourite place of ours. We haven't been there since before our trip to America. It is so full of huge, climbable trees, which the kids just love. Little Rosie was mesmerized by all the trees, looking up into them with a face full of wonder. She loves to get out into nature.

We started with a picnic which Marty had prepared. Rosie felt like such a big girl sitting at the picnic table with us. She sucked on a cocktail sausage as if it was a dummy!

Then we went for a nice family walk along the little stream, climbing various trees along the way, until we came to our favourite area, full of the biggest trees. The kids played hide and seek together while Marty and I doted over Rosie. Tarja had her friend from school with her too.

After being cooped up for weeks without a car, it was so lovely to get out and spend some quality family time together. Here are a few photos, but you can see all of them by clicking here.