Sunday, 10 January 2010

What a nightmare!


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.


Mrs. Mike said...

I could not even imagine being in your shoes. I don't want to even try.
He has a personal helper at school correct? Ask for a full time helper. There is a family at my church who adopted a little boy from Romania who has major and dangerous mental/emotional disabilities that developed due to his treatment and conditions in the orphanage before being adopted at the age 3. He became dangerous to himself and his family as he became older and stronger, I remember baby sitting him at age three and he would rip my hair out in fits of craze... They now have a full time helper who is with him 24/7. They don't always need the helper, but they already had four other children so they use the helper a lot!

janet said...

Venus, my heart goes out to you and your lovely family. I wish there was something I could do for you, or some advice I could give. But know that you are all in my thoughts and prayers.

Tracey said...

Oh Venus, I hope you don't mind me writing from my completely ignorant position, as I really don't understand the in's and outs of the whole disorder - it is obvious you are trying so hard to help him, this must just be so challenging and mentally draining for you.
Have they given you any indication as to why Barney seems to be getting so much worse, since his diagnosis - he really knows now why he feels like he does but is it possible to give fuel to the fire or is he getting older and the symptoms are becoming more accute?? It would be so good if they could get you some trained help, take the pressure off yourselves and step back if at all possible, for a few hours, I don't know if that is possible but considering how close you are to it all... its crazy that that service is not avaiable when you really need some thing to change the cycles... you are so very intelligent and your beautiful children are a great testament to your hard work and loving commitment to them all. I hope the help you need will come to you and your little man and return life to a more even keel. Much love. xx

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