Okay - that's a rubbish title for a post, but I have two things in my head - (unrelated!) I wanted to chat about today.. so sorry if you opened this post hoping to read about some wonderful meeting with me doing breakdancing on a table, off my head on drugs. Alas, I am not that interesting - yet!
The first part is on meetings...I had 3 back to back meetings yesterday, and no way round it but to take Lucie with me. Its new territory for us, in that shops and the community have been the focus so far. But whilst we are trying to expand Alex's world, by default, Lucie also has to fit in with mine. We have a little additional challenge with her in that she has separation anxiety.
Her background is a little mixed up, having spent a year in guide dogs training, living in Worcester with her puppy walkers, and staying in the guide dogs kennels (not something she coped well with) and was then moved to Sheffield onto the Autism Programme, where she lived with two foster families, and spent her days at the training centre. Whilst she was really well cared for, the changes have left her a little unsettled and she doesn't want to be left alone. Net result, I don't want to test what stress would come out of leaving her more than five minutes, but am told she would bark, chew things, and be unhappy. As that is not my aim, we are giving her a very stable start, and will work with Support Dogs to develop her independence at a rate that works positively. In the long term, I will be able to leave her for a couple of hours, but till then, she is my 'velcro buddy' ( a term used in schools when a special needs child has an adult with them at all times, rather apt to us too). So if I can't take Lucie, I can't do an activity. Fortunately, as I am officially a full time parent carer for Alex, and have not been able to work, because of the commitments for the children, I can do this. I do volunteering work, but the great thing about that, is you take on what you can manage. One day when I am feeling nostalgic and strong, I'll let you know about my life before autism, and how it has turned everything upside down - but not something for today.
So back to the point - 3 meetings - First was 3 hours at a Carer's Centre, then a one hour meeting in a parents home where I do 'befriending' - oh heck - I won't brush over that one, its too good not to share. ....
I am sure many of you will know someone who would benefit from befriending. Scope - a big national charity - have a scheme called Face-to-Face. Parents who have disabled children can volunteer to go on a 12 weeks training course, and then are able to offer a befriending service to other parents with disabled children who want to share their emotions and experiences. The idea is that the feeling you get where no one can understand you as they haven't been there, is taken away, as we have all been on similar journeys in one way or another. In truth it is like having a coffee and chat with a friend, but with structure and confidentiality that means you can be open, without a professional taking notes, reporting back or having any consequence. When I was befriended a couple of years ago, it saved me at a time when life was too mixed up to make sense, and now I am hoping that I am through my worst, I can help others at that point. So I am a volunteer befriender. And if you want to find out more here is the weblink.... http://www.scope.org.uk/face2face
...and so I spent an hour with a lady (in a house with dogs and cats!), and then finally I went to Alex's school for a consultation meeting with council officials on proposals to expand his school. As I have gone on too long already, I'll be brief and say Lucie was SO good, just settled and waited while all the talking was done, and took all these strange places/people in her stride and I was so proud. I have come to the conclusion, I could go out in scruffy jeans and no make up and no one would notice as they are all looking at Lucie and not me. Excellent. She is one girl I am happy to be upstaged by.
And so from meetings to drugs....
This is just something that has been in my head for a while. Drugs and dogs. If i write this incredibly personal stuff at the end of a long blog, maybe only the die hard followers will read it, and I will get away with not offending anyone on my views. Lets try it.
Drugs - by that I mean people drugs - in my case I am thinking of anti-depressants, (or anti anxiety medication) and ASD intervention drugs for our children. I have been thinking a lot about drugs recently for two reasons. A couple of years ago, I was in the downward spiral so many of us get in where there is no light at the end for us to see. My doctor prescribed Citalopram - an anti anxiety medication. I barely lasted 6 months on it, not because it doesn't work, it has superb results, I just am not good at taking medication as I get confused with who I am and what part is the drug. Its part of being a control freak, I need to know I am responsible. Having said that, I have been back to my doctor 3 times in the last couple of years to ask to go back on them, just to help with coping with stuff that I am not good at. Not unreasonably, he tells me to find other ways to cope (two years ago he advised me to write a book to deal with offloading emotion - I laughed, but ironically I guess that is what I am doing now). I did find other ways to cope - the occasional glass of wine. Not ideal, but its pleasant and it works!
Whilst I am toying with whether I can continue with this journey with or without medication support, I then find myself on a path whereby the consultant paediatrician recently reviews my son. He tells me he thinks Alex is ADHD and would strongly recommend a course of medication to see if it will help peel him off the ceiling (!) I know - I shouldn't be flippant about such a serious thing, but really, my little Alex, a munchkin he is, and tying lead weights to his feet would only slow him down moderately at times :) We were to discuss it further with his Paediatric Psychiatrist, and review. Now I am confused. Drugs scare the living bejeebers out of me, but I also hugely respect they have an important place, so trying to keep an open mind is challenging me. We have our appointments and reach a point where we settle on Melatonin for Alex, a natural drug to aid sleeping (it is the natural hormone we all have to help us differentiate night from day, that ASD children don't produce enough/or does not function effectively). A few weeks in and it is working really well for night time issues, so a great start, but we had another review with the psychiatrist two weeks ago. I might add I hugely respect both these consultants. I may not always agree with them, but do appreciate that it is always a discussion, and I feel we are being guided by very knowledgeable people, open to ideas. The solutions available are rarely black and white, so good debate and reaching a consensus is how most of these appointments seem to go.
Its dilemma point for me. If medication can help Alex concentrate and learn, it would be wrong of me to deprive him of that opportunity, but do I really want to embark on prescriptions, side effects and so on of more serious medication.......and then I pull my trump card - Lucie. It occurs to me all the evidence of assistance dogs shows the calming effect on the family and the positive mental health improvements that can arise. So I buy myself some time. I tell the psychiatrist we should not explore other medication for Alex at the same time other changes in his life are going on with introducing Lucie, or we won't know what is having which effect. We agree to wait 6-12 months to see if Lucie helps Alex be more calm, and review later. And deep down I am thinking the same for me. Lets see how having Lucie around makes me feel, calmer, more confident in challenging situations - who knows. I know it is a big ask, but for me one of the real benefits of dog ownership could be giving us all a more natural way to cope with the stresses of daily life...and maybe - just maybe - dogs and drugs both have a role to play, but for now I am hoping we can explore a more natural approach, and leave more intrusive interventions to fall back on. We'll know in time!