Christmas past, present and future

The boy and I have announced the end of Autumn term in education this week. He had completed all of the subjects that we had set, gained fantastic results in his English and Maths coursework and I needed a break. Basically this was to complete all of  the silly little jobs that needed doing in the run up to Christmas, for example ordering the boy's prescription, returning library books and attending some gym classes so that I can stuff myself silly over the holiday period! During my many outings today I noticed a lot of school age children with their parents so maybe they broke up this week too. My poor girl is still at school all week, but I know that at least next week, she and I can enjoy quality time together instead of me  dragging her out here there and everywhere.

Christmas has always been rather peaceful in the quirky household. Despite my being a huge fan of Christmas. Both of my children were scared of Father Christmas so trips to see him were never made because my poor husband would have to go and sit on Santa's knee in their place! He has never been that fussed about decorating the tree or attending parties. Advent calendars required too many skills, remembering to open a door each day and then being physically able to open said door and foil containing the chocolate. I would often have to do it for him and I would often find that by the time Christmas arrived the boy would have several doors left to open because he would not have remembered to do it or asked me.  One key ritual for him started after watching Toy Story, for a few years the boy would call a meeting with his toys to discuss the welcome party for the new toys and where they would go. We  have always been to look at the Christmas model village scene in our local garden centre and then have cake. That is the sum total of his preparations.

 He always went to bed at the usual time and often needed reminding to open his presents on Christmas morning. I guess because presents weren't normally part of our every day routine he didn't think to look for them. He  always enjoyed his presents however. He would play with a toy for an intensely long amount of time before exploring another item. This was generally the cheaper present and I would moan that my lovely expensive presents were going ignored! Nowadays its all about the computer so he's even less sociable than normal. Last year, he was fascinated by a free game that he downloaded and he played this for about six months before starting on the game that I had bought him. It is a bit of a teasing point currently.  He managed all of the other rituals such as Christmas dinner really well. Crackers were also well tolerated but he couldn't ever pull hard enough. When we had had friends over in the evenings he was the one putting his pyjamas on before they had gone home and hinting desperately that he was tired, even if it was his good friend visiting. This is completely opposite to the girl who loved socialising and staying up late.

We watched a programme about Aspergers a few months ago which was incredibly informative. They showed a couple celebrating Christmas, who also stated that they would see relatives for about an hour and that's the socialisation done. The boy hooted with laughter at this and stated that he wished he could do the same. At a time when we all got together with our large, noisy families and spent time with them, he  often struggled. When he was a baby/toddler he would often go upstairs and sleep through it all. I was always puzzled by the fact that when we returned home, he would also want to go in a quiet room for a bit more sleep! My lovely mother in law often used to organise party games which he didn't really enjoy participating in. Bingo was a particular nightmare for him, because he would often read the numbers backwards and the pace of it was too fast for him to find the number before the next one was called out. He then worked out that being the youngest boy, he could tell which prizes had been bought with him in mind so he would just claim them anyway! Last year when he was very depressed, he stayed at home with me and did not see his other grandparents, uncles and aunties.

Luckily for us, our families are very understanding. The boy has always been known to spend time upstairs away from the excitement and this was before a diagnosis or his depression. Since then, it all seems to make sense and I guess there are more allowances made for him now. He is coming with us this year to see family and spend a few days with them. He is nervous about this and has told me that he struggles when the younger ones insist on jumping on him when he is upstairs or if he is invited to play party games. We have talked about how he can distract himself, by taking one of the numerous dogs out for a walk, spending time with a cousin his own age or just coming to find me. When we arrive home, as always I will not plan any events for him for a good few days so that he can recover and enjoy some control back over his routine again.

I think this has been the way of life for so many years now. I wonder what will happen when he is an adult and has moved away from home? Will he come and see me for just an hour? The last year has seen him blossom into someone that is very confident with his loved ones who will  engage in any conversations that  people will initiate with him. Christmas for him will always be peaceful, spent with people that he loves, doing the things that he likes to do and I think that is a truly wonderful way to enjoy this special time of year.

Merry Christmas Everyone! Clairexx

The Power of Touch

The boy has been unwell over the weekend with a cold. He must be feeling it very badly as he even wanted me to cuddle him. Well, it wasn't really a cuddle, he puts his head on my shoulder and I pat him gently on the back.

I really enjoy the opportunity to "cuddle" him because he has never liked any source of physical affection from us. It was very difficult to see my friends babies enjoying a big hug, where they would burrow their faces into their mothers chests and put their arms around them too. When he was a baby, the boy would return from weekends away with the family and be so unsettled that he would need us to pop him into a quiet room to let him sleep it all off. He would find the attention so exhausting.

As he grew older, I would feel rather rejected that he didn't want to cuddle me and I would ask him how could I show him affection. He used to reply that food was a good way, so I have indulged him a lot over the years. He has a very sophisticated palate, good strong cheeses, gentlemen's relish and olives to name but a few tasty morsels.

 As part of my job, I learnt how to teach parents  to massage their babies. This also involved discussing the benefits of massage throughout life. The  boy at the time was being assessed by an occupational therapist who diagnosed sensory processing disorder which had led to the development of the dyspraxia. She started to brush the boy's limbs with a lovely soft brush in order to start de-sensitising him to tactile sensations as he was extremely sensitive to this. We were advised to also do this at home and the boy really took well to it. I then considered using the massage techniques that I had been taught, so started to use firm strokes on his back which he really enjoyed. We made up stories behind the massage, for example Star Wars was a particular favourite whereby the space ship would land on his back and then my fingers would moon walk up and down his spine. Through this I was able to maintain some sense of connection with him that was special and individualised for him.

When he was ill, it was this touch that kept our bond strong. I remember him turning off his computer game without a murmur so that he could have a massage before bedtime. I used lavender oil which really helped him sleep too. It is said that with teenagers particularly, a back rub is a great way to show them that you are there for them during stressful times. Neither of you have to say anything, the massage does that for you. It releases lots of happy hormones in both of you which has a huge benefit on emotional wellbeing.

 Since we started home educating, he is the most affectionate  he has ever been in his life. He will reach out and stroke my back and give lots of smiley eye contact. He has also started to do this with other members of the family too. It is moments like these that I really cherish and make a note of to go in my happy memories because he is now  starting to feed back his feelings towards us. Don't get me wrong, the boy has not been a grumpy tyrant all this time. I have so many photos of a smiling boy,  clearly we have been doing something right for him It is just that these moments of connection between us and within the family demonstrate to me that he is building his own feelings of security and self esteem. You can not underestimate the power of love.

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.

The Home Education Journey

If you had said to me two years ago that I would be home educating the boy I would have laughed in your face! Me? I could not even help him with his maths homework without getting irate, let alone teach him the whole curriculum!

 

But I have and when people marvel at this I say its because I had to. The situation we were in was so dire with his rapidly increasing anxiety and our lack of knowledge, lack of professional help in managing this, home education seemed like the best and only option. I likened it to fixing a broken leg before the football player can play again. There was no way the boy could learn if he was not comfortable in school. Plus he was missing so much education by refusing to go that at least I could ensure that he was learning. The most important factor in all of this was his emotional wellbeing and his education.

 

One day I will do an entire page on school refusal from a parents perspective and the little things that I have learnt along  the way that will hopefully empower parents so that they do not hit the wall like we did. Best make sure for that post you have a hot drink and tissues as its rather heart breaking.

 

Anyway, the decision was made, we de-registered him and the school were extremely understanding, probably because we were taking responsibility for him instead of relying on them. There are heaps of fantastic resources on Home Education.  A good place to start is Education Otherwise http://www.educationotherwise.net/ which informs you about the legalities of it all plus, there are templates of letters that you can print to inform local authorities. I read books, (Dad always taught me to read around the subject!) Ross Mountney http://rossmountney.wordpress.com/ is a particular guru of mine and when I read her book, it just made sense. Very reassuring that I was doing the right thing.

 

There are two main  approaches within Home Education, Structured and Autonomous. Autonomous schooling is child led, they choose what they want to do and concentrate on activities that supplement that. Learning is through play and this type of education would support the view that learning is occurring outside of the classroom, thus a visit to a museum at the weekend can contribute to this or a walk on the beach. Quite a few parents within my Home Education Group are of this genre. Their kids have never been to school and they look at me in shock as I talk about lessons, "needing to learn" and "curriculums"

 

 Unsurprisingly, we fall into the former camp whereby we try and follow core subjects, sometimes this is in line with the National Curriculum and other times we go off piste. We follow the school term, as the girl still attends school so we break when she does for holidays. We work from books, online learning resources, the boy is currently studying World War 1 Aviation design on an Open University course that is free.https://www.futurelearn.com/. We have been able to access a Dyson Hoover from the James Dyson Foundation and take it apart, we have borrowed microscopes from the Royal Microscope Society, there is so much out there. It is mind boggling at times!

 

I use a diary to plan our work, we roughly follow the same pattern every week, thus daily maths and English, twice weekly Science, weekly history and Geography. I work one day a week ( more about that another time) and on this day, my Dad teaches him maths plus he is required to complete work that I have set him. This ranges from worksheets, to an essay or poster. We attend a group within the home education group specifically for the teenagers once a week, the teenagers also have a lovely PHD student teaching them historical views on gender, race and class once a month at the University, plus we do some voluntary work, filling a book case at our local vegan shop. He walks the dog with me every day too, thus there is plenty to be getting on with. The home education group also organises trips and recently we were very lucky to visit the local newspaper building and see the newsroom in action.

 

 Our first day was awful, I had planned so much and we ended up shouting and crying at each other. A lot of Home Education resources describe the process of de -schooling in that the child needs to recover from being schooled and they quote that this takes a month per year that the child attended. During this time, no attempt should be made to educate them. I knew that  we had to re build his trust in us so I got round this by ensuring that  the material we used to educate him were documentaries and sensory based activities, such as cooking and planting because he was so anxious. By about February of this year, more activities that his school attending peers were participating in, could be introduced to him with good results.

 

He is now doing a distance learning English and Maths KS3 course which involves completing assignments for a tutor to mark. He did very well in his English recently so it is reassuring to know that he is not falling behind his peers.

 

Am I getting any help with all of this you ask, the answer is plainly no. The boy has the new Education and Health care plan, so I thought by obtaining this for him I would have some support, financial or a least a pat on the back occasionally but it  seems to fall to me to be ensuring that all the provisions are met. There is currently no financial assistance which would be true for most electively  home educated children. Some authorities have welfare officers that visit the home and check that the family has a philosophy of education and evidence how they are going to achieve this. Ours doesn't, but I think that is because our Home Education group has worked so hard to achieve a good relationship with the authority that it isn't deemed necessary or as a priority.

 

GCSEs are looming, he has expressed an interest in working for the police, intelligence or as a farmer. Will keep you posted on that side of things as we progress along.

Relax a bit more

I said I was quirky didn't I?

Bit of a Body Combat addict me, my instructor plays this very loud, its like clubbing again but in the name of keeping fit! Absolutely LOVE this song, so thought I would pop it on here just to share and have a lighter hearted post.xxxxx

And......relax

Fighting the Anxiety Monster part 2.

A while ago, I read this article by Dr Tanya Byron and it really struck a chord with me.

http://www.thetimes.co.uk/tto/health/child-health/article4020135.ece

At the time we had been through the CAMHs system with the boy and felt her frustrations at the lack of priority we had been given when we needed help so urgently.

I have often marvelled at parents who do lots of activities with their children. I always felt very lazy,  as the boy had the odd hobby and the girl has her dancing, but some of my peers were out every night and weekend with various competitions and activities. Both of the children, especially the boy, love their technology and media so would prefer to spend time with these instead. We have a dog, so they do get out for a walk and they can walk for ages so I felt less guilty about that, but I would often desperately try and encourage them to join in other activities or put time controls on the computer so they would do something else instead.

Until I got my sewing machine. Suddenly,  here was something I loved to do and I would feel extremely cross that I would be expected to stop sewing and make dinner.  I remembered how I would read as a child, so much that my Dad would hide my book so that I would socialise and I thought about how frustrated that made me feel. Was it right to control my childrens free time as well?

I read on some home education blogs about how time on the computer is controlled and the tantrums not to mention sneaky tactics employed by the children to get it back were rather scary. Another blog advocated letting the child choose and this is something that I do. Much to the horror of other parents.  However both of my kids are well behaved, sleep 10 hours a night, eat all their meals with us and join in with activities,  chores that I ask them to. Like me with the sewing machine, they too can break away, reluctantly at times to do something else. The boy is a bit of a geek,  so the games that he plays are not your average violent Call Of Duty type. He gets very fed up with the portrayal by the media that gamers are associated with.

I digress. So since I have been less controlling over the childrens time, the ambience in the home has been bliss. They probably interact with me more now because they get bored and want to do something else. Even the boy has been known to ask about a dog walk in the afternoon. I have applied this with caution though, which introduces one of my all time favourite parenting experts that has changed how I parent the kids. Dr Laura Markham,  wrote Peaceful Parenting and writes the Aha parenting blog which always makes sense. I struggled with reward charts and again I always considered it to be anothet method of control. Since reading Dr Laura, the relationship I have with the children has improved no end as has their behaviour too.

I will talk about it more another time, but for now here is a link to an article that I read yesterday that spoke so clearly to me about the girl and the Anxiety Monster.  This half term has been 8 weeks long, she has worked hard and its time for her to chill out and enjoy having her time to herself again. No timetables, no following someone elses agenda, just time to be her again.

http://www.ahaparenting.com/_blog/Parenting_Blog/post/11_Ways_Your_Child_Loses_When_You_Rush_Him/

Anxiety Monster

Focussing on the girl today who has had a turbulent few days recently. She started to come home from school, crying because she had not achieved any points for her work, which she thought that meant she must have been chatting when she quite clearly hadn't. Or the teacher at swimming was cruel to her friend and I had to do something about it.
I found that by validating her feelings and agreeing that she must be worried but did she really think that she was chatting did not work, however a cup of tea, toast when she got home soothed away all her frustrations and I  put it down to needing to decompress like I do most days.
Her parents evening came along and her teacher also noted that she was less energetic than normal. She was also concerned too and wanted to help. She commented that the girl was a bit of a perfectionist and wanted to please everybody.
Hmmm, where had I heard that before? With a sinking heart I realised that the Anxiety Monster had claimed another one of my children and all the battling that I had done to rid itself from me amounted to nothing. It was sat there, smiling smugly and large as life. But I am not going to let it win.
The teacher suggested that the girl keep a journal to record her worries and if she showed them to her she would write a reply,  so that the girl would not let them grow and turn into something even bigger. We also started this at home too and she engaged really well. It is strange that my chatterbox daughter prefers to write her thoughts down rather than say them to me, but as long as she is getting those thoughts out rather than letting them fill her mind, I am happy to go with it. We also finally got the " would you rather be home educated " question out into the open and whilst she admitted she was jealous of her brother and she would also like to be with me, she also stated that she loves her friends and teacher too.
She left school, today, remarking that her head was empty of worries and she felt happy.  She had used the journal in school and the teacher had responded really well.
When I was about 12, my mum gave me a Judy Blume diary which I used for similar reasons. I have kept a diary pretty much ever since and find it so helpful. I was touched to discover that my dear Granny also kept one and that we had a similar style too. I use my diary now to discuss positive events too.
So Anxiety Monster, we are on to you and we will fight you.

My next post will describe another tactic in my strategy.

Sensitive mouths

My mum will probably say but the boy isn't fussy, he never stops eating!

 

Which is true, but I have noticed over the years that he has an aversion to certain textures and this is very common in children with dyspraxia/sensory processing disorder type traits. The muscle control of the mouth is also an issue for some children which means that they can not co ordinate the mouth for speech. This is known as verbal dyspraxia and it may occur alongside or in isolation of the big muscle groups in development. Speech Therapy is often needed for these children. Lucky for the boy, his speech was not affected at all.

 

I never forget trying to teach the boy when he was about 3 years of age how to eat a grape. I sat opposite him and exaggerated the action of opening the mouth really wide and biting it. I knew that the nursery he attended also gave them fruit at snack time and my friend had told me that they had apples to eat some days. How did they manage to get him to eat an apple? I tried all the methods I knew of, but the boy just could not crunch into it. I asked the playworkers there and they assured me that he managed.........I think perhaps he may not. He also had problems with biscuits, chocolate, sweets anything that needed chewing. For a long while he would only eat sausages and pasta in a butternut squash thick soup. My other half got rather bored of this menu as we would eat it 3 times a week! But I felt that by cooking what he would eat and gently adapting it, his repertoire would grow and indeed it did. Since becoming a Health Visitor and using the Infant and Toddler Forum as a resource for feeding under 5s, this has also been encouraged with fussy eaters. Here's the link if you want more information, yes look at me getting all technical!

 

https://www.infantandtoddlerforum.org/extreme-food-refusal#.VEZ7bnV0yP8 

 

  The boy has an amazing sense of taste, strangely enough, he has  loved olives from a tiny age, strong cheeses and fish too. He was even tolerating chillies for a while until last year. His current favourite meal is Marmite pasta, I think he would make me make it every day if he could! He now prefers his food quite dry in texture,  lumpy casseroles are no longer tolerated because he calls the vegetables slimy. My mum hides vegetables in his meat sauce which is a great idea, she puts everything in it, blitzes it and he will often have seconds!

 

The sensitive mouth issue reared its not so pretty head again when he started to be seen by an orthodontist. He would always need to be prompted to open wide, with me reminding the dentist of the dyspraxia, I guess he can't feel how wide his mouth is due to his proprioception difficulties. Anyway, I was sent out of the room during one appointment so that he could be X-rayed. The next thing I knew, the nurse came out all flustered because he refused to hold the plate in his mouth. I found him in tears. Apparently he had dropped it and she told him to bite harder by which time he had had enough. I was not impressed by the nurses attitude towards him, so I registered with another dentist, who wanted to X ray him and was not at all sympathetic when I told him that the boy was anxious. The boy by this time was practically in my lap with fear.

 

So we avoided the dentist for two years.

 

You will find that I have not been very consistent in the boys childhood in remembering that despite having a diagnosis of dyspraxia, I have not treated him as such. To me, he is the boy and I often expect him to muddle through like everyone else. My other half and I often need hefty reminders in the form of a meltdown to make us go "oh yeah, he's going to act like this because of the dyspraxia". Thus an epiphany arrived one day when I thought about the Special Needs Dentist, of course he would be eligible for this. So a quick word with his school nurse who referred him in and a few weeks ago we went there. What a lovely service. The X ray machine does not need you to hold the plate in your mouth. Hallelujah! So understanding, so patient. He is also prescribed a high fluoride toothpaste, I guess because manipulation difficulties prevent children cleaning their teeth adequately so there is more protection, definitely a good service if your children have similar diagnoses.

 

 

Difficult Day

Am sure I will post lots of these, though since I started home educating, these days are now occasional rather than weekly when we would be at loggerheads with one another.

The issue today was Maths. He could not understand it, he would not read the information to help him understand it, he could not see the point of reading it or learning it because it had no relevance to his future. Am sure that many neuro typical teenagers have the same resistance. So I adopted typical parent tactics, rattled on about his future, good job, wage etc and the final weapon in my arsenal was the removal of his computer until he came downstairs and LEARNT it.

He then became very sad and talked about how he was scared of his future. He does not feel ready yet for GCSES. I guess he isn't really. A few months ago, I met some of the organisers of the Dyspraxia Foundation and she told me that her son was 26 but acted like a 23 year old. The emotional maturity does not magically catch up it seems. Even though there is less of an obvious difference between a 23 and 26 year old, she could still see it. Throughout his life boy will often catch up with his peers to then have rapid changes of rules and expectations foisted upon him whilst he catches his breath.

Sometimes I think the girl is more emotionally mature and she is 3 years younger than him.

When I started home educating, I made it clear that I could not teach him GCSE level. This is starting to look as if I am going to have to. We have an Education and Health plan but that is not doing anything at the moment, it just loosely talks about supporting me with home educating him, so far, so nothing. The council want him to go back to school, I don't think that will happen either. The whole system of having to wear uniform, be timetabled and somebody else's routine to adhere to, let alone cope with the social skills, the chaos of lots of pupils is just an insurmountable task. I could join the millions of people who claim that this is life and he just has to get used to it, trust me I have tried. I see all of the teenagers walk past my house in their uniforms and my heart still sinks as I look out on a world that I can not be part of any longer.

But, I remember the tantrums, long and hard tantrums, the constant walking on egg shells, the girl crying in her bed because she was too afraid to come downstairs in case he hit her. I see a boy now who will laugh, reach out to touch me on my arms as a sign of his affection and gently tease his sister. This is our new world and we love it.

Anyway, after him getting the hang of his maths and answering all the questions correctly we went to our Home Ed group. As per usual he had the other kids laughing at his jokes which he tells in a very dead pan manner, I exchanged the horror stories of the morning with the other mothers who had similar things happen to them too. We are normal in our own way.

Setting up the blog

Hello everyone, welcome to my blog!

Very excited to be here.

I am a complete technophobe so please bear with me whilst I try and set up, I am sure that as I go along, things will change and look more professional. However I just wanted  to start writing and the fact that the blog was not looking pretty enough was stopping me so am just gonna go ahead and post anyway and it will be a learning curve as we go.

Sooooooooo, following on from the positive comments I had from Facebook when I did a daily awareness post about Dyspraxia, I felt spurred on to continue this and bore you even more!

The boy is now 13 years of age, he was diagnosed as Dyspraxic when he was about 7 and this followed a rather turbulent toddlerhood and preschool years. When he was 12 he was diagnosed with Aspergers as well. I will write about the early years in the near future, so much to say about them and I guess what each diagnosis has meant for him and us.

Today we went to see his doctor who diagnosed him with Aspergers and depression last year. The boy has made a significant improvement since he last saw his doctor and I wanted to see if his anti anxiety medication was still necessary as I felt that I was managing Dyspraxia/Aspergers symptoms rather than those of depression. Bearing in mind the last time he saw the doctor, he hid in his room and barely talked to him, today we attended the clinic and he engaged really well.

Talk turned to socialisation, or the S word as we home eduactors like to call it and first we discussed the other teens in the homed educated group that we attend. The boy stated that he felt they were too "alternative for him". When explored further we ascertained that the teenagers were happy to play in a park and climb the equipment whereas the boy felt that this behaviour was too immature and not cool. However he then talked about school kids and the hierarchy of who has the best phone, most girlfriends etc and I think he also felt out of place there. So I guess he still has not found his tribe. I expressed to the doctor that the boys who have Aspergers that are home educated do not come to group because of their own reluctance to socialise. I on the other hand have insisted that the boy attends these groups to increase his social skills. I just refuse to be ruled totally by the boy's anxiety as in order to have a job later in life, he will have to TALK to people so lets make this feel less uncomfortable in a managed safe environment to gain experience. He does go off with them happily and participates in activities but I doubt  that I will be having anyone over to tea as yet.

The doctor felt that when and if (oh please when) the boy starts sixth form college, he will meet other people that are like him there. This I have often expressed to him, indeed, I loved the 6 th form when I was younger because all the annoying, class disrupting kids had left and we could learn in peace. So we watch and wait.

The boy is to stay on his medication for a bit longer, and to review this in the new year. The doctor also felt that the boy may need specialist help in the future to help him cope with making changes but this would need to be expressed as a need by the boy and not me/us. I agreed. He and us are all comfortable at the moment and we are apprehensive about re-joining the rat race again. Currently I feel that by giving him space and time the boy will progress and catch up with his peers. I can not force him. It needs to come from him.