Thursday, 28 January 2010

My favourite times…

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There are many favourite parts to every day, and I have many favourite things about being a mother.  I love watching Rosie take a bath as she enjoys it so much as she shows off and splashes, and laughs at herself.  I love seeing her new accomplishments, such as learning to climb the stairs by herself.  But at the moment one of the favourite parts of the day comes in the evening when the little ones are winding down. 

After dinner time, before bed time, Rosie gets very tired and needs some full on Mummy time; and she likes nothing better than to cuddle up on my bed, in her PJ’s, reading stories with me.   We get a selection of board books out and she snuggles up close to me on the bed. I always let her pick which stories she wants to read.  She just loves books at the moment (and is going through a real ‘Mummy’ phase which I’m quite enjoying!)  At the moment her favourite book is a baby’s first picture counting book.  Her favourite pages are the 7 balls (I think because she has recently learnt how to throw a ball and really enjoys rolling a ball back and forwards with a willing playmate), the 20 dogs, and the 50 sweeties page.  She barks at the doggies, and tries to pick the chocolate buttons off of the sweetie page.  She can happily read this book over and over.  I just love to snuggle up close to her and watch her little expressions change as she turns the pages.  It is a really beautiful part of the day and one that I treasure.

Another of my favourite parts of the day is my night time snuggle session with Barney.  Now that he is taking the melatonin he is much calmer in bed and our cuddles are less about deep breathing and reducing anxiety, and more about a sleepy bedtime chat with a back scratch and cuddles.  The reason I am enjoying this so much is because as Barney gets sleepy he gets so loving (he is always loving but often anxious too).  Being a very verbal young man he likes to talk to me about how much he loves me.  He lays there stroking my face telling me that he loves me more than anyone ever loved anybody.  He says ‘I couldn’t live with out you, we are best friends, I would never do anything to hurt you’. And I always reciprocate by saying the same back to him.  He kisses me and strokes my hair, and I scratch his back until he doses off to sleep.  I can’t tell you how much I enjoy this, as it makes a huge change to having to constantly calm him down at bed time.

A few nights ago he asked me “Mummy, what is a Guardian Angel?”  So I explained to him how some people think that there is a special angel that watches over us and protects us, and we talked about this for a while.  He seemed to like the idea and appeared very peaceful. Then he said to me, “Mummy, you must be my guarded angel then” and explained how I protect him and keep him safe. Now he often comes to me saying “you are my guarded angel, and I am yours” which I think is totally the cutest thing ever!

Sunday, 24 January 2010

Ode To Tarja

Tarja has been complaining that there are not enough photos of her on my blog.  And since she is so truly photogenic I have planned to rectify that right away…..

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As you can see, in half of the photos she has her baby sister. That is because she is like a 2nd Mummy to wee Rosie, and is nearly always cuddling and kissing her.  She loves her to bits, and Rosie returns the feelings. 

 

 

Saturday, 23 January 2010

Tuesday, 19 January 2010

Melatonin

It’s been about a week since Barney started on the Melatonin and all I can say is ‘wow!’

He takes it before bed, then does his usual routine of watching a dvd in bed for half an hour, before I get in with him for snuggles. Depending on his mood we either chat and cuddle, or do some relaxation together. The first night on Melatonin it took 40 minutes from when he took it until he was asleep. The next night it took about half of that.  The third night he fell asleep watching his video! Now most nights he watches the film, has a very sleepy cuddle with me where he keeps telling me how tired he is, and is asleep within seconds of me leaving the room.

He is happy about that. And so are we. It means he is not up worrying until 11pm or later, about things little boys shouldn’t be worrying about. And it means that Marty and I get a few hours to rest now before our bedtimes. What a relief.

He is still getting anxious during the day about things. We decided to turn the office into an office/chill-out room for Barney. We still have the computer desk in one corner.  But we have turned another corner into a yoga/relaxation area, and the other corner into an art studio. 

The yoga corner has a mat, cushions and his yoga cards stuck to the wall. We have incense and candles, plus relaxation sounds – the sounds of water, rainforests etc as Barney can’t stand music at the moment.

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The art corner now has a table, a huge bookcase full of art equipment and an easel with a whiteboard and chalkboard on it.  He spends hours every day making things, creating things and drawing, so it is ideal for him. Plus I’ve noticed that he uses art to express his worries and fears. 

Here is a photo of the young man himself practising his yoga moves…

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Wednesday, 13 January 2010

Devotion to duty…

I went to see our GP yesterday on behalf of little Barney.  As far as I am aware each GP appointment is allocated 10 minutes. I was in her room for 40 minutes and when I came out, boy did the next patient give me some evil looks!

But in all fairness, it wasn’t may fault.  I explained to the GP about Barney’s anxiety and his sleep problems. She wanted to read the letter of diagnosis from the psychiatrist. So she went off to look for it.  She was gone for 20 minutes! It turned out they hadn’t received a letter; it must have been lost in the post.  So then she had to phone Lurgan Children’s Hospital to ask for another letter, and to get the letter read out to her on the phone.  If I’d known I could have taken my copy.

Anyway, she spent a further 10 minutes on the phone to the psychiatrist’s secretary explaining about Barney and the help he requires. She was so thorough – asking what help was coming his way, how long it would take, whether he would be getting one on one help etc.  The psychiatrist was to phone her back in the afternoon, but the GP was going home as she is only part time. So she gave him her mobile phone number, and told me that she’d only be pottering around the house anyway.

That afternoon she phoned me from her home to tell me that she’d been talking to the psychiatrist from the autism team and they had sorted out a prescription for Barney for some Melatonin.  She said that Barney had not been referred for one on one help, but after she told the psychiatrist about his elevating anxiety levels he had decided to refer him. It will take about 13 weeks to be seen, but then he will get up to 6 one on one sessions with an autism specialist of some sort.  She also said that as parents we will be contacted very soon by a place in Newry that offer parental support to children with autism.  So that’s a relief. It is still a waiting game, but at least we know that we are waiting for something!

I was so impressed with the GP. She went out of her way to help, even though she had other patients waiting, and she was then off work. She dealt with it in her free time and even phoned a prescription through to the chemist and made sure Melatonin was in stock. If only all GP’s were this dedicated to their patients! (I have met a few less enthusiastic ones in the past!) 

So Barney had his first dose of Melatonin last night and guess what?  He was asleep within 40 minutes, and slept through Rosie’s crying! I am hoping that it wasn’t just a coincidence. Time will tell.  Melatonin is not a sleeping tablet or anything like that. It is a hormone that is made in the body, which regulates the human body clock and tells us the difference between day and night. Many autistic children seem to be low in Melatonin and they think that this is why they have awful trouble getting to sleep at night.  Here’s a snippet from the link about about Melatonin…


  • Sleep Problems in Children with Neuro-Psychiatric Disorders

    There have been a number of well-designed studies and case reports on the use of melatonin in children with neuro-psychiatric disorders that result in sleep difficulties, such as autism, psychiatric disorders, visual impairment, or epilepsy. The studies conducted so far suggest that melatonin can shorten the time to fall asleep and lengthen sleep duration

I have also received a few emails from a lovely fella who works at the charity ‘AutismNI’ (formerly PAPA). He has been really helpful and understanding.  He is putting our names down for the next lot of courses for parents of autistic children.  He is also getting a volunteer to phone me; all volunteers are parents who have been through the same thing and know the system.  He is sending us a free book to read with the kids as well. 

Monday, 11 January 2010

It’s not all bad though…

It’s not all bad though. On a positive note wee Rosie is starting talk. And sing!  She has the song ‘row, row, row your boat’ stuck in her head and is often to be seen rocking back and forward saying Rarrr, Rarrr, Rarrrr Barrr’, which is really rather sweet.

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She is also saying a few words. She won’t say them on demand, but comes out with them when it suits her.  She said her biggest brothers name today quite plainly whilst pointing at him. Needless to say, he was totally delighted. It is lovely that she has the two teenage siblings. They are like mini parents to her.

Tarja wanted to give Rosie a sweet after her dinner. She said ‘do you want a sweetie’ and Rosie plainly answered ‘sweetie’ with a big smile!  Quite a tricky word too, don’t you think?  Other words she’s coming out with are ‘bikkit’ (biscuit), ‘boiya’ (bottle), and bye bye.  There’s nothing that makes us all smile as much as when she says a new word.  It’s just heavenly! Tarja also taught her to point with her two fore fingers and say ‘Yo’!!!

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Sunday, 10 January 2010

What a nightmare!

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We are having a nightmare time of it. Yes, we are.  The biggest, scariest night terror of nightmares.

I’m not kidding, it’s been a hard few weeks.  Our children are still the loveliest, most beautiful, amazing little things that ever lived, but knowing what to do with them sometimes is pushing us to our limit.  I never expected having 4 kids to be easy, but this is just much harder than I’d ever imagined!

One month after Barney’s diagnosis of Asperger Syndrome and things seem to be getting harder and harder for him.  The anxiety he experiences is at times crippling.  And heartbreaking.  It is frustrating to finally have that diagnosis, but to be sitting around waiting for some help from somewhere.  It is like limbo land. 

Barney has been empowered by the diagnosis and now feels able to say directly to people “I can’t handle this situation because I have Aspergers”, which is a  vast improvement on just going into panic and hysterics when he doesn’t like something.  For example if someone is joking with him - he can’t handle jokes sometimes and would just go into a sort of panic, or anger. But now he just tells it as it is and puts a stop to it.

But his anxiety has gone into overdrive the last few weeks, for various reasons.  Being on school holidays and having to go back to school for one.  He had some nightmares which has made going to bed way too scary for him. So getting him to bed has taken up to 6 hours some nights.  Which means Marty and I just don’t ever get to relax.  He has panic attacks in bed which wake Rosie up. She cries and screams because she is scared, which in turn panics Barney even more, and so a cycle of screaming children starts and it’s the perfect situation to cause a nervous breakdown in any parent. 

Now I have to lay in bed doing relaxation techniques with him.  He gets upset several times every day just thinking about the people he loves dying. He can’t understand death and doesn’t feel certain about it, plus he loves us all so much that the thought of us being gone is too much for him. And so he ponders deep thoughts about death; lays in bed worrying about it until he gets into a panic.  Many times every day he comes to find me, in tears, saying ‘I’m thinking about it again’, and nothing, nothing can distract him from those thoughts.

He now can not bear music. Not even for a moment. It makes him think of death, it makes him sad and it makes him panic. Just today we went to a christening in a local church. We had to sit in the back row as Barney could not bear to hear the hymns. There must have been about 8 hymns in all and I had to take him outside and stand in the snow for each one of them.  A guy at the back came out to see if we were ok and I had to explain to him that Barney can’t bear to hear music because he is autistic.  He was very kind to us and offered to help in any way he could; by bringing us out chairs to sit on and opening doors for us.

During the week we both had an appointment with the nurse at the asthma clinic.  The nurse, full of good intentions, gave us a hand out about how to deal with asthma. The last section of it covered what to do in an emergency and she said that if it got to that stage we should go straight to hospital. Of course neither of us has severe asthma so that is highly unlikely.  Then she showed us a model of a human throat and how it constricts during an asthma attack.  At the end of this I looked at Barney and his face was sheer terror. He started to panic saying ‘I am going to die’. He had heard the nurse talking about going to Casualty and related it to the TV program and thought it meant that he would die.  We both calmed him down and explained. Then he started hitting himself in the face saying ‘I hate myself’ over and over.  The nurse told him that he was a lovely little boy and he shouldn’t hate himself. Then he threw himself onto the floor and lay there hitting himself in the face and saying that he hated himself because he’d misunderstood about the hospital.   I had to explain to the nurse that he has Asperger Syndrome and she suddenly looked like it all made sense to her.  Then every time we spoke about him, his asthma, symptoms etc; he would click his fingers in my face. Over and over… click, click, click.  She obviously presumed it was some sort of thing he does at times, but it was a new one to me.

It used to be that when I said to people that I thought Barney might have Asperger’s Syndrome they would look surprised and shocked, and gave me the impression they thought I was exaggerating. Now days when I tell people that he has Asperger Syndrome, or that he is autistic, they look at me with understanding; with a face that says ‘yes that makes sense, that explains it’.

After today’s christening we all went to the local hotel for a little party.  It was lovely and there were lots of kids there for both Rosie and Barney to play with. Barneys best mate from school was there and they were pleased to see each other.  But it was a trial.  After the stress of the church and having to leave for every song I was glad to get to the hotel.  There were two girls dressed as clowns and they were making balloon animals and doing face paints. Everything was ok until Barney got his face painted.  Recently he has had his face painted as a tiger and a pumpkin. He then became a tiger for several hours and didn’t feel the need to become a pumpkin.  This time he got his face painted as a clown.  That’s when the trouble started.  He thought then that he needed to BE a clown. But he couldn’t be a clown because he didn’t know any tricks and couldn’t make people laugh.  No matter how much I explained to him that he could just have fun and not have to BE a clown, he couldn’t handle it. He got crosser and more aggressive, moody and angry.  I tried to get him to make Rosie laugh but she just gave him a smile and that upset him more.  It is hard to explain in writing but he just couldn’t enjoy the day any more as he had to BE a clown and couldn’t. I was about to bang my head on the bar table and start crying my eyes out in front of all the guests when I came up with the idea to talk to the clowns. I took him over and explained to them that he has Asperger Syndrome and the lines between reality and imagination are blurry for him. I asked if they could teach him how to be a clown.  So they taught him how to make balloon swords, and then let him paint their faces. He was delighted. It totally changed what could have turned into an awful melt down.  But it was hard. 

I just don’t know what to do to help his anxiety. The Asperger traits I can understand. I have read quite a few books on AS now and have a basic understanding of it. But the anxiety is something else; although it is caused by the AS.  I emailed the NI Autism charity for help and they are sending me out details of all the courses that they offer for parents and siblings. I am desperate to go on one of these but they don’t seem to be on that regularly from what I can tell.  The guy who emailed me from AutismNI was really helpful and understanding.  Then we got a leaflet in the post from the Autism Advisory Board saying that they had received a diagnosis for Barney and he is now ‘on their books’. It didn’t seem to say anything about giving us any help so I phoned them and a psychologist phoned me back. I explained to her about the anxiety problems and she said that she see’s that all the time. But the hints and tips she gave me were nothing that I haven’t already tried.  I asked what help they would give me and she said that all the help tends to go through the school.  But his problems are far worse at home than at school. In the end she offered to send someone out to see us and go through some ways we could help. But it will just be a one off visit. She said that if Barney needed one on one help he would have to go through another psychiatrists assessment. I don’t get it. He already did that.  It is all so confusing to me. Perhaps the only help offered to parents is through the charities?

How can it be ok to let a child suffer this sort of anxiety for the foreseeable future?  Surely this is a matter of emergency?  I am going to have to phone the doctors tomorrow and speak to the GP as I just don’t know what else to do. I am at my wit’s end.

Monday, 4 January 2010


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