The power of reading around the subject

As I have stated before, I have always read around the subject, mainly due to my Father encouraging me to do this. This I believe has held me in good stead, particularly when liaising with teachers, paediatricians and psychologists about the boy.

One aspect of this that particularly frustrates me is when my knowledge conflicts with that of a professional. Two years ago I would tend to not say anything and doubt what I had read before, returning home to check and find out that there was a discrepancy. This would add to my confusion. To make matters worse I would apply the latest recommendation by the professional to the boy with horrific results. It got to the point where he dreaded me meeting with other people to discuss his behaviour as he never knew what tactics I would be trying next. The main tactic that was generally advised were rewards and the dreaded chart. They never EVER worked and I loathe them. I will talk more about why in another post as today I want to concentrate on how advice can vary widely which adds to our difficulties as parents.

I was visiting a client recently and met another colleague from a different professional background. She had attended training  which discussed the fight flight response in humans and how this affected children with autism. She reported that the adrenaline surge in the body actually prepares the limbs to either run away or lash out at someone. There is also a depletion in oxygen to the brain so there is less rational thought as the energy is directed to the limbs. The consequences of this is that the child will either hit out or run away.

I thought about how this related to my experiences, right from an early age the boy's temper tantrums were long and hard. They were also very physical. There was one incident when we were trying to leave the swimming pool and he created such a noise that my husband thought other people were thinking that the boy was being abducted. Another time, the boy did not want to go to school and was kicking me as I drove the car. Naturally my reaction at the time was to shout at him which of course made the situation a lot worse. When he was diagnosed with dyspraxia, although we were still recommended rewards charts ( I just used to smile and ignore them), we were more aware of triggers that could cause a melt down, and managed a bit better than before.

It's like feeling around in the dark isn't it? Waiting for someone to turn on the light and to then say "Ah yes now I see". That happened to me last week with this colleague. If I had not have met her, I  would till be fumbling. The boy was not being naughty at all, he was so stressed and nobody understood him. How many other children are not being heard?

The main clash was  between myself and an educational psychologist when he started secondary school. Due to the fact that the boy was managing most of the time to keep it together in school she would not diagnose anxiety. She also observed some of his incidents of distress and again dismissed as it being behavioural as he was quick to calm down when he was in a place of safety. Apparently the sobbing did not last long enough for her expertise in this area. A GP, a psychologist all argued that it was anxiety but the school did not listen to them only her.

Some criteria for referrals in children's mental health services dictate that the behaviour needs to be present in two settings for an assessment to be made. I would feel instinctively that the boy did not feel safe to display any emotional distress within school. Instead, as with most children, he would hoard it in  a nice big pile and let go when he got home. I have since read this in books written by experts on Dyspraxia too. It makes me wonder how many more children and young people are suffering due to this criteria. It is not a one size fits all type of condition which is why most of it is regarded as a spectrum.

Our GP was also querying Aspergers when he referred the boy to children's mental health services. (CAMHS). We informed the school of this to be told that it wouldn't make a difference to how they would treat him. It did not help that the person we saw in CAMHs described the boy as being quirky but not Aspergers.

The implications of this was that the behaviour advice was handed out in droves, rewards, special time together, not speaking to him if he did not do as he was told, deprivation of his X box. These kinds of strategies unsurprisingly led to more meltdowns so we were taught how to react non violently to him which involved the suggestion of  him and us signing an agreement that he would go to school ( I also smiled and nodded at that tactic). Interestingly the educational psychologist did not agree with non violence response which added to our confusion as to what we were supposed to be doing. The final offering that was professed to us was  a parenting course ( I again smiled, nodded and later turned that down too.)

When the boy eventually sunk into a depression due to the "non existent anxiety and Aspergers", I got into the driving seat so to speak to sort him out. We saw a private psychiatrist who diagnosed everything that hadn't been, prescribed anti depressants and suggested that I access experts who could help me with the Aspergers side of things. I read and read and to my horror I discovered well known experts on these matters confirming everything that I had thought about the boy. Tony Attwood in particular describes how the cause of the problem for some children is that they can not communicate extreme stress at school, it is not the parent who does not know how to control the child. There goes the two settings theory.

 I know that Health professionals will warn about the dangers of the Internet, I do it myself with the families that I work with . But I also know of the good ones too and it is with this in mind that I have created a page with useful links for you to research too. Time and time again I hear stories of parents struggling to cope with the behaviour of the children and being given inappropriate strategies to manage them. It is crazy that we should become the experts and guide the people from whom we seek advice. I can only liken to it  that being a nurse I am no expert on the inner workings of the heart, but I can talk forever about atopic eczema in children as this is in an interest and necessary for my role as a Health Visitor.

 It is generally first line professionals that parents are referred to when a problem is suspected. Sadly it seems that  the experts are at the top of a tall tree that can only be reached when the child is very unwell. The charity Young Minds are relentless in their campaign to get this changed and it seems that politicians are also now realising that practice has to change for intervention to happen earlier.  However there is absolutely no shame in getting up and turning on that metaphorical light ourselves if we can. The information and advice is out there we just have to reach out and not be afraid to share it with those who are working with us.

Until next time, Clairex

I am not a friend of the earth as I keep falling over on it

The boy is hilarious.

 

Throughout his life he has always had a different view on life, he loved off the wall type stories such as Bob, Man on the Moon and would express the most surreal of statements. He has been recently keeping the teenagers amused at the home education group. I have seen the girls in peels of laughter as he sits there, in all seriousness telling them that NASA plan to launch their rockets using fart power. He maintains its a true story.

 

When I tell him how funny he is, he will often reply that he doesn't mean to be funny. He is just being himself. I remark then that if he doesn't make it in his chosen career of working in IT then comedy will always be there. The comedian Mark Watson reminds us a lot of the boy. There's quite a few of them about.

 

Tony Attwood wrote an article about the discovery of Aspie criteria. This is meant to view Aspergers as an enhanced skill rather than a deficit in social skills. Many great people such as Winston Churchill and Einstein have been attributed as being on the spectrum.  Attwood discusses how the skill for noticing detail, the loyalty and always being honest makes for someone who is dependable and also highly employable too. Attwood concludes that :

 

"The discovery of aspies brings into focus valuable, endangered opportunities that have repeatedly marched past without adequate notice of their potential. There is the opportunity to make new friends; a chance to consider those who may seem comparatively awkward, but decidedly more honest and genuine. In addition to discovering new friendships, there is the opportunity to utilize unique perspectives and talents to tackle problems. There’s work to do in the following century – diseases to cure, environments to save, freedoms to preserve. Fortunately, there are people with minds capable of the challenge, with the ability to focus and persevere. They possess perspectives and talents unique enough to solve the biggest of problems, or enhance the most challenging projects. They are Aspies. They are living proof that the best places to play will always be those that are discovered."

 

 There have been articles in the press recently about how companies will actively seek out people with Dyspraxia and Aspergers. The boy is particularly interested in working for intelligence and apparently one organisation has a whole Dyspraxic community based in their team.

The boy when I tell him this, will remark that the office has desks with soft corners so that they can't bump into them and special transport to get there so they do not forget tickets or  where they have  parked  the car. Its a whole world out there and as Attwood states there is so much work to be done. Another mother of a dyspraxic adult told me how her son applied for a job and based his presentation on the skills that Dyspraxic people have and why he should be employed. He got the job.

 

There are times when I am willing the boy to remain quiet as he is sometimes a little lacking in tact and just marches forwards in giving his opinions. And he just loves to drop me in it sometimes too. He did this recently at the group and announced that I was very pro a recent public health initiative that had been heavily contested. As I sat there squirming, trying to wrestle myself out of the embarrassing hole that he had put me in, I suddenly remembered that I was  always telling my two children to be honest and not be afraid to give their thoughts on an argument so what kind of role model was I being? Sometimes that boy is just too clever by halves.

A Good Day

Had a lovely day today with the boy.

He has an assignment due in for his English course and he needs to produce a leaflet to promote a cause. He has chosen to write about our high street which is rather dire. Anyway, he became so involved in his research about it that we were late leaving for the home education group session. That is a first!

The group today were watching the film, Leave to Remain which was very good. It was just the teenagers and I was so pleased to look around the room and see him on the sofa with the others, enjoying the film. We all had lunch together and he gently mocked the others as they had fruit, being the son of a Health Visitor he had a chocolate biscuit! As we packed away he joined in with the conversation with the others and laughed at their antics.  We then went onto the next venue where we had a lady from the local refugee support group gave a talk about the process of asylum seeking and dispelled the myths that the media and politicians tend to portray. 

As we left, the boy remarked that he likes the group and the people in it and how comfortable he feels when he is there. He said that if he went back to school, he would have to start again. This is very true and who knows what is around the corner as the local authority are finally starting to pull together and try and decide how he will be supported in his education. He may be offered a place in the specialist ASD unit at a very good school, which he may or may not like. His health is at the forefront of everything and I hope that he will try the unit because of the special support that is there. However I also know that home education group has parents there too that can point me in the right direction for exams and they also teach too. One mother I met today told me about her ASD son who is now attending college full time and getting the bus with a small group of friends. He sounded so much like the boy and I felt greatly reassured.

On current form, the boy is proving that school was not for him, he is engaging and learning and if that means we aren't mainstream in our approach in life then so be it. I am just so glad we did what we did and took that leap into the unknown, two years ago our home was fraught with so much anxiety and stress. Today he washed up the pots and pans without me even asking him to, he talks about his future,  his hopes and dreams  and deep down I know that he will go far

The Role of the Volunteers.

As a Health Visitor,  I admit that I did not quite understand the role of charities in supporting parents. I naively believed they were full of lovely people that were on the end of  the phone  for parents to talk to and required funding to keep this support going, but it was up to us professionals to provide the expertise. 

Boy was I WRONG!

My first contact with a charity was with the Dyspraxia Foundation. I was having a particularly bad day with the boy and I remembered that I had seen a leaflet in my GP surgery about Dyspraxia when he was about two years of age. I had always avoided self diagnosing through the Internet but that day I googled it and felt my breath sucked out of my body as I read the symptoms. My son amongst other things had always hated having his toe nails cut and there it was in black and white. I took the symptoms to my GP and we were referred to a paediatrician and occupational therapist where the diagnosis of dyspraxia was made. The strategies that were suggested by the foundation were invaluable in the home and school as were the resources sold by them to help inform us. We became members and it is them that I have turned to when things get a bit tougher and I am unsure on how best to support the boy.

I realised the full expertise of the voluntary sector two years ago when the boy suffered a rapid decline in his mental health when he started secondary school. We had a raft of professionals dealing with him but I started to notice that they were giving different opinions and the teachers particularly just didn't seem to understand the emotional impact that was caused by his dyspraxia. I also felt that because we presented as having less need than other students we were denied support and help. The educational psychologist did not believe that anxiety was behind him refusing to go, the GP said it was, nobody was taking any ownership of the situation. It was when a parent support advisor recommended that I do a parenting course so I could learn how to listen to the boy that I realised that I was not being listened to!

I will be the first to admit that I am no parenting expert and that I have plenty of room to improve.  So I enrolled on the Netmums parenting course. This was so that I could "attend" whenever I was free as they sent weekly emails for me to read, plus homework to implement at home. The first email described behaviours that the course could help with and I saw that it didn't apply at all to us. He was and still is so well behaved that there was nothing to change. More worryingly, the behaviour he was displaying was described as having an emotional decline behind it and advice needed to be sought. So back to the drawing board again!

After another traumatic few weeks, I posted on the Netmums Coffee house forum, asking for help. I wanted an objective opinion, where nobody knew me or my background.  I was at the end of my tether and desperate for some advice. The support advisors on the forum were just amazing. They validated my feelings,  they expressed concern for the situation and they signposted me to Young Minds.

Young Minds have a helpline, where you can phone and they arrange for a trainned practitioner to phone you back at an appointed time. They give you an hours long phone call and follow up any advice they give with information that they send out in the post. They are also a useful resource for Dyspraxia. The practitioner that I spoke to was fabulous,  she gave me the words that I needed to say to the school and psychologist. Unfortunately she was also horrified at the lack of help we were getting, it seems that postcode lotteries exist for young people's mental health too.

I had all of this help for free. No waiting lists, criteria to meet or differences in opinion about the boys health. The advice was trustworthy and valid for our situation, and I felt listened to.

I now tend to always sign post my families to Netmums. It is evidence based resource and I trust them implicitly.  They are always at our professional conferences and they support with a vast range of parenting issues from pregnancy to late teens. The support from other parents in similar situations is amazing and so reassuring that you are not the only one struggling and I have learnt so much from it. I truly appreciate the voluntary sector now and the role they play.

Tiny tiny seeds

“ When you plant lettuce, if it does not grow well, you don’t blame the lettuce. You look for reasons it is not doing well. It may need fertilizer, or more water, or less sun. You never blame the lettuce. Yet if we have problems with our friends or family, we blame the other person. But if we know how to take care of them, they will grow well, like the lettuce. Blaming has no positive effect at all, nor does trying to persuade using reason and argument. That is my experience. No blame, no reasoning, no argument, just understanding. If you understand, and you show that you understand, you can love, and the situation will change”—  Thích Nhat Hanh

 

So need to have this printed everywhere.

 

Last week, me and the boy had a bit of a spat, quite a major one really. He wanted a computer game and asked for more pocket money which I had not budgeted for so I refused. He then quite naturally as teenagers do, refused to do anything I asked him. I then lost my cool (as most mothers of teenagers do) and reminded him why I had to budget since giving up my job to home educate him. This did not go down well and to spare gory details, it left me thinking that he could be at home with us for many years to come and I will be at home looking after him. I also realised that the burden of being the reason as to why I gave up my job and cause the loss of earnings to the family was a horrid one to bear, certainly not one to boost his emotional wellbeing.  I can not force him to go back to school, we tried a few years ago and ended up in such a mess. No end of reasoning/arguing is going to encourage him either, we have to wait.

 

This time last year, the boy was very unwell. I left work to care for him and educate him at home and rebuild all of that lost confidence. He flourished and is in a much better place. My year off was also a very much needed break for me too. Caring for a child with special needs is a huge  challenge. The Aspergers part particularly so because you are always trying to anticipate triggers that will cause a meltdown, or stick to routines , it felt like trying to quickly patch up a leaking ship at times. No sooner had I sorted out one problem, another issue would appear. I was exhausted. Add to this another child, a job and then a degree in Public Health which enabled me to qualify as a Health Visitor, I felt very raw too. I remember when I was crying in the car about giving up work, my darling husband turned round and told me to treat this time as an adventure or a holiday. Home educating the boy and being at home was not to be regarded as a failure but as a new exciting time ahead. We were also very lucky that we could afford to do this.

 

So during the year, I exercised and changed my eating habits. This was because I had time to be mindful of what I was eating and not so tired that I needed to eat cakes and chocolate to reenergise me. The frugal side of our new lifestyle led me to Jack Monroe http://agirlcalledjack.com/  and her wonderful recipes that did not cost the earth. In order to get the boy out meeting people again, we volunteered with a charity that distributes unwanted books to avoid them going to landfill. We had a bookshelf in the local vegan shop which again led me to try new foods, reduce my meat intake and take more of an interest in a more environmentally friendly lifestyle. I also haven't bought a book since.

 

Its amazing what's out there in the community. As part of my degree, we had to learn about community capacity and services that are available. I can honestly say that I felt ashamed, because it is only after this year that I really do know about what is going on right under all the professional's noses. I sought the Autism network for their outreach library so that I could learn about Aspergers. The boy's psychiatrist wasn't even aware that this existed and I ended up giving him the references of the books that I read! There are social groups too. I applied to be the local  coordinator for the Dyspraxia foundation and it is my intention to let paediatricians know that I am there for parents.

 

I had time finally to fill out forms that professionals advised me to use and seek support too. It is so difficult when you are in the thick of it to find letters, sort out paperwork, make phone calls and arrange appointments. I know of several families that have this a lot harder than me and my respect for them to be able to keep going is extremely high. Just being able to have the mental space to generate clarity about who I was speaking to and why was a real luxury.

 

 Although the boy is better, there is still more work to do to enable him to engage in education, society and feel good about himself. I want the very best for him, and the girl too. We currently fund his distance learning courses and although I have been told that I can access funding from the Local Authority, that is not exactly forthcoming at the moment. Supposing I get to GCSEs next year and am still waiting? Could I return to work?

 

So I thought creatively about how I could manage this. I thought about how other colleagues in similar situations to myself manage and also the other working patterns that they do. I also thought about other home educators that work and also the whole concept of an educational day in itself in that he is participating in several lessons but our day is much shorter than a standard day. Less queuing up, no assemblies, tutor time etc.

 

I realised that I could do both. Its going to require some pretty hot organisation and time keeping skills but it can be done. I have help luckily from my Dad who teaches the boy maths and my husband is also going to work from home one day a week. With a little bit of bribery, the boy produces some amazing, quite often hilarious pieces of work of which I am immensely proud as this demonstrates that he can study independently too.

 

I have to make sure that I look after myself too and maintain all of the new habits that I inherited over the last year. More than anything I need to ensure that I can stay calm and continue to let the boy heal and grow so he too feels rested and sufficiently recovered to go back out into the big wide world again

 

Holland

I first read this poem as a community health nurse when I learnt how to teach baby massage.

WELCOME TO HOLLANDby
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

 
When the boy became unwell with depression last year, this poem became so acutely true for me, I resonated with it strongly. That is I resonated with the negative aspects of being in Holland so to speak, I struggled and still do struggle with the  special aspects of being a mother of a child with special needs. The comedian and author Kathy Lette in her book The Boy who Fell To Earth, describes how she felt as if she was shut out of a dining room that was serving the most exquisite food. She could smell delicious aromas but was not allowed in to taste the dishes being served.

The sense of isolation was overwhelming. I was not prepared in any way for my life to be so disrupted. I had followed lifes rules, I worked hard, continually strove to be a good mother, I had never been a cause for concern in my life and yet the hand of fate had decided it was me that was destined for a extremely different path than my peers. But I didn't want to be there. No matter how many tulips, Rembrandts you could throw at me , I wanted to be Italian. I was not at all gracious or accepting of this life change.  Some people say that it takes a special parent to parent a child with special needs, to which i would grit my teeth and imagine handing them the baton so they could be special instead of me.I hated my life being controlled by circumstances and inside I was so angry. Professionals that were meant to guide me and support me during this time also appeared to speak in a different language,  so their advice was totally inappropriate for us to use. I needed to know how to be Dutch. I had Italian ways of thinking and it was so difficult to adjust to this new lifestyle.  It hurt so much to listen to the Italians telling me how well their children were doing.I started to unfriend acquaintances that moaned on Facebook that they had nothing to be happy about to post. How could they say that when they had a job and children that were healthy and confident?

I comforted myself by thinking that at least us Dutch people were more compassionate and genuine than the two faced Italians. Because I had to leave my job, I had more time at home and I too started to appreciate being able to have more time for both of the children and my community. My whole perspective on life  changed so much and I love the liberation that I have through home education.But it is still difficult to accept. If I could tap my sparkly red shoes together I would wish for Italy.The future in Holland just seems so uncertain, I do not know how things will be for the boy. Will he ever leave home and get a job? How do I access support to enable him to do this, because life is so much , more challenging for him. Will he be well, or is he destined for a lifetime of fighting depression?

So yes, life in Holland is beautiful,  however the slower pace does not mean that it is an easy ride. Parents are crying out for more support from pressurised services, they have to hammer on so many doors to access any form of help, I would argue that I am a lot stronger for having gone through this experience.  We have made some extremely difficult decisions to adapt to our new path in life, but strangely enough the boy is flourishing.  He is understood,  he doesn't need to change to be accepted anymore and that is worth more than all of the Rembrandts in the world.