Supporting the Supporter

Its been a while since my last post, I guess that this is mainly due to the return to normality of work, school and family life. I started blogging about a year ago when I had so much to say about my quirky little life and I wonder if this was more about having an outlet to express how I felt as well as acting as a resource for people who had similar experiences.

However this does not mean that my dyspraxia awareness raising mission has gone to ground as well these last few months. In fact it is probably taking a rather large proportion of my spare time. I am a local  coordinator for the Dyspraxia  Foundation, and cover a rather large county which I had not realised until I tried to find venues for us all to meet. Attendance at the meetings was also rather low and trying to cater to everyone's needs has not been easy. Another  coordinator then advised me that I could not be everything to everyone so I found a nice little local room and our recent meeting was much easier without worrying about parking, big events being in the same park and knowing how many children's play areas are in the same venue!

I also  had the wonderful opportunity to present a workshop to parents about Dyspraxia at a special needs fayre last month and this brought home to me how  misunderstood the condition is. One parent stated that a school that specialised in teaching children with dyspraxia actually asked her what it was!! Other schools have also been known to exclude children because they are too "dyspraxic", this happened to the boy when we looked.

I enjoy these opportunities that I am given to discuss dyspraxia because these are my times to talk about the challenges that I have been presented with too. When the boy was younger, there was another coordinator trying to run a group and I admit that I never attended either. It is difficult when you have children's needs to consider and bearing in mind that a major challenge is social anxiety, barriers to attend a group are massive before you have even left the front door!  I knew of a few families in a similar situation to me and I would really use those times that we met to really saturate the moment with a good hearty discussion. Those times were rare and day to day life was just too busy to have the energy to access support. Facebook wasn't even in my life then, so it was at times isolating when we were going through a rough patch. Another factor was when there were positive times, I wondered if I had made it all up and was maybe expecting too much, in essence denying that the Dyspraxia existed until it invaded our lives again.

 I can see the sense of relief of finding one's tribe when I organise these meetings or present to a room full of parents. Tips on managing various sensory aspects, accessing professionals and talking to teachers are all shared and gratefully received. That sense of belonging, when the difficulties that hand dryers present or the amazing sense of humour are talked about is priceless.

 It is easier to access support these days thanks to social media, through this there are no pressures to bring children and thus you can make the most of being able to process the support that is offered at a time convenient to you. Adults who continue to experience anxiety about meeting people can also gain from this. I also share resources on the Facebook page for this blog, in a bid to continue raising awareness and reduce that sense of isolation that I experienced in those early days.

 I still hope that my little group will continue and be a welcoming place to share experiences. I also plan to connect with local professions because if there is a way that I can enable better understanding of the people they encounter then that has to be worth striving for. As for me, well there is a National Autistic Society group ( the boy also has this) down the road from me that meets every two weeks, so maybe I will access my support from them. As always I know that I will also continue to benefit from my local group as well. We have a few adults now and it is these people I look to for advice how to foster independence in the boy so that he can continue to feel confident about engaging with the outside world and beyond education. Even though life is on an even keel at the moment, it will certainly be valuable to celebrate the positives and look forward to the future with my tribe.

xx

Happy ever After?

This time three years ago, our lives were about to be turned upside down as the boy met his biggest challenge yet when he started secondary school.

This time two years ago, I felt an utter failure as a mother. Despite the fact that I had taken him out of school in an attempt to try and restore some normality back to our shattered lives, I just felt that I had got parenting all wrong and a huge sign stating failure was shining brightly above my head.

The boy was also diagnosed with Aspergers at the time and we eagerly accessed our local autism centre to find out more about how to support him and educate him. There was one particular book that had several experiences written by parents and it was reassuring to hear that we walking along the same path. However these tales had been written with a "happy ever after" at the end, they had managed to create some success for their children which made me feel even more frustrated as our story was just beginning and I could not visualise how it was ever going to end.

 If you are reading this now at the start of your journey as a parent of a child with special needs, I embrace you and reach out to you in the chaos of your hopes and dreams raining down upon you, the normal rights of passage of parenthood disappearing into the horizon, the increasing isolation from your friends, community and society as a whole and that overwhelming distress that you feel as you say "this wasn't meant to happen!"

But it did and I guess it happened to those parents that I read about too.

So, in the aftermath we picked ourselves up, dusted ourselves down and started walking.

Every positive change I noticed and observed. If he engaged well with a lesson that I taught him, or started to go out with his father for an hour and leave me behind. These little signs of recovery were like treasured jewels that I would hold and gaze and add to my collection. The excitement I felt when he disappeared with the other children one day during a home education meet up and I was able to utter that longed for sentence "where's my son?" was a moment I will always cherish.

I never take these experiences for granted.

Nowadays, the jewels are much bigger and shinier, a teacher remarking how hard he is working, a day out with a friend that he has not seen for ages, him buying himself some lunch. Yet I still pick them up, gaze and acknowledge silently that things are going Ok at the moment. I don't want to add the happy ever after to our story at the moment, I am still tentatively stepping. My husband remarked that he very much doubted I would ever relax where our boy was concerned. He is probably right.

I guess the failure sign has gone now. In its place stands a mother who knows deep down that the increasing amount of jewels that she has in her basket is evidence that she is undoubtedly right about how to care for her child. She is not afraid to  question the expectations that society places on our children and the need to somehow, at whatever cost to make them fit. Like so many other parents before me, I follow that path in the hope that for those that come behind me, a  less difficult time awaits  and that no one is ever made to feel a failure because their child is different.

xxxx

How to massage the older child/teenager

It dawned on me the other day that I have often written about the benefits of massage on the child but have not yet said how I do this. The whole concept of nurturing touch is embedded in us as parents, a gentle stroke of the brow or a loving sweep on the arm of our child can come quite naturally but for those of you who would like to know about this in depth,  please stick around as this post is for you!


I was fortunate to be trained in infant massage by the IAIM http://www.iaim.org.uk/ as part of my role working within a Health Visiting team. This training really enlightened me to the sensitivities of parenting and how communication through touch can enhance the connection with your child. These days it is easy to access baby massage classes locally but what happens when the baby starts to crawl and it is all you can do to catch them still for long enough, or when the child becomes a teenager and to them you are the most embarrassing human in the world, how do we get that connection back again?

Vimala McClure, the founder of the IAIM states that before the age of 12, children learn more about their world through feeling as opposed to seeing or hearing information. When a child is praised there is an 85% chance that they will take this in and believe it,  if it is accompanied by touch rather than just the spoken words. During massage, attention is solely focused on the child, which increases their self esteem and provides a safe environment for them to open up and talk about  their worries.

I should also raise the point that not all children like being touched, especially if they, like the boy have sensory processing disorder. When he had occupational therapy involvement, we had to brush his limbs and back with a soft brush using firm strokes in order to desensitise him. He has never liked being cuddled or hugged, though he is starting to tolerate a very light embrace. The girl also finds massage tickly but she enjoyed the stories that I am about to explain later and she loves having her hair stroked.

So where to begin:

Firstly ensure that the environment is warm and comfortable. If your child is older or feels a bit awkward about having a massage then having the TV on in the background is acceptable to begin with. I have massaged the boy whilst we watched a particularly violent scene in a Tudor drama, the emphasis here is about establishing that connection and contact with the child, as they begin to feel safe you will find that they will prefer to be in a quiet room.
Also ensure that you are feeling relaxed. The last thing you want to convey to your child is your stress, a few deep breaths can help with this.

Remove all items of jewellery that can scratch.

Ask permission. So very important. Even babies can give permission to be touched  through a smile once they know the sign for massage. This gives a sense of ownership of their bodies and as they grow older they will be able to feel confident about saying no if they do not want to be touched. This again enhances their feelings of security,  self esteem and feeling that they are listened to. If the child becomes bored and indicates that they want to stop then it is important that this is respected too. Sadly due to the increased awareness and reports of sexual abuse there is a fear of touching our children once they go beyond their toddler years. Vimala McClure however argued that a massaged child would know the difference between a healthy touch and would have developed strong emotional bonds with the parent that is giving this. If they were to be talked to or touched by someone else in a way that concerned them they would be more likely to report it. As a health professional I would always demonstrate massage on a doll, never on someone else's baby because this would be very invasive. Massage is treated as a  special time between parent and child, no one else is part of this.

You can massage through light clothing such as a T shirt if you prefer or by touching the  child's skin. If you are massaging the skin, you may need some oil to reduce the friction. There is a HUGE debate within the infant massage community about which oils are safe to use and many supermarkets sell natural oils specifically for baby massage. In the past I have used baby oil, or almond oil with a few drops of essential oil added to make it smell nice and help the boy relax. Beware of nut oils if there is a nut allergy within the family. Olive oil should also be used with caution because it can damage the layers in the skin. Organic Sunflower oil could be used instead. If your child has eczema, their prescribed creams are a useful product to use.

The strokes that can be used depend on the part of the body that is being touched. Limbs are good for long sweeping movements. If the child is particularly hairy, you may find that just stokes moving down the limb are better to avoid it feeling irritating if you were to sweep up. Tummies are best massaged around the belly button in a clockwise motion.

With the back you can be quite creative with your massage. It is less intimidating for teenagers because they can not give you eye contact, but you can still convey that feeling of love for them.
With a pre-schooler or a junior child, the back can be stage for the most amazing stories. You can pretend it is a chopping board as you prepare ingredients for a pizza, using chopping motions to cut the vegetables, slicing for tomatoes and grating for cheese. Then the back becomes the pizza, with the sauce being spread and the toppings being sprinkled on. A warm oven cooks the pizza through as your hands are still warming the back and then we slice the pizza up. One particular favourite of the boys was Star Wars, we had spaceships landing on his back, spacemen walking and exploring the new land and explosions as the jedi fought. There is another  idea here on this You Tube channel
https://www.youtube.com/watch?v=EVvZ6FcVsds

Throughout the massage, talk to your child about the strokes and check that they are not too tickly or firm. The boy used to open up and talk when he had his massage, which was a huge relief when he was depressed. It was a way for us to reconnect through the sad experiences that he had suffered and provided a strong base from which mutual trust could flourish again. Often massage is given before bedtime to help a child relax. This could also be useful for those children that are hyper-active, the firm pressure enabling them to de compress and relax. I always end the massage thanking the boy for letting me massage him, again increasing his feelings of security and respect.

I hope that this has been useful, it is a subject that I am hugely passionate about and a useful resource in my parenting tool box to keep that loving connection strong.

Clairexxx

Anxiety

Today, I thought I would post a review of a book that I found particularly helpful when my son became unwell with anxiety and the help from CAMHS seemed like hunting for the pot of gold at the end of the rainbow. I guess like most parents, if your child is unwell, you want to start accessing help straight away and lets be honest, appointments often mean that you have to almost sit on the problem sometimes for weeks until help is offered.

The book is called Coping with an Anxious or Depressed Child, by Sam Cartwright Hatton. There is a link to purchase it here:

https://www.anxietyuk.org.uk/products/children-and-anxiety/coping-with-an-anxious-or-depressed-child-by-dr-sam-cartwright-hatton/

The first 5 chapters of the book discuss signs, symptoms, causes and differences between normal adolescent behaviour and depression. The types of medication, counselling treatments for anxiety are also discussed and the whole tone of the book is greatly reassuring.What I particularly liked about it  was that it was written like a programme of care that would ordinarily be prescribed by psychologists. You could not progress on to the next chapter without implementing the previous chapter's recommendations.

Seven Confident Thoughts are described by the author as the building blocks of improved self esteem in children. At the time of reading I could easily see that my boy was not thinking any of these. His school was perceived by him to be terrifying, we were always shouting at him about his attendance and he was stating that the city in which we live was unsafe and full of crime. More importantly we were using strategies to get him into school that involved consequences and ignoring bad behaviour, which were the final step in the programme, he was barely achieving the first chapter, so no wonder nothing was working.

It made me realise that actually even before he was unwell enough to no longer cope with school, he was not really functioning at a confident level. His temper tantrums as a toddler were extremely difficult to manage and it was only when we noticed that we could get the girl to do as we asked that we realised he was different. His delay in co ordination was a reason for seeing the GP but to be honest, it was the tantrums that gave the most difficulty. The paediatricians that we all saw, advised the rewards/consequence system, these never worked and just exacerbated the situation. I came to realise that in the end, he just did not have any motivation left to meet the never ending list of day to day challenges that were presented to him. He did not feel good about himself, his lack of co ordination meant that he could not play football with his school mates, he had no control over the noisy hustle and bustle at school and at home, we were always nagging him to tidy his room, participate in sporty activities after a school day or rushing around like every other family. At some point, his confidence had disappeared into a hole and there was nothing left to give.

 I have  always been  wary about the reward chart/consequences systems, they can work but they need to be delivered in such a way that the child is able to feel that they can achieve what is being asked. I think with dyspraxic children this is particularly relevant, they are prone to suffer lower self esteem, so challenges  need to be bite sized and achievable if this system is going to work. The book gives some very good examples of "good" and "bad" consequences so that this step is managed sensitively and carefully.

So, we started on the first step.................and stayed there for a rather long time. The boy by then was suffering from depression, he was not doing much so it was a struggle to think of activities that I could praise him for or get him to do. I felt terrible when I realised this so I became very creative in my approach and gave him a task such as emptying the dishwasher or the bins so that I could tell him how wonderful it was to have him helping me. Bearing in mind there had been an awful lot of shouting and negativity in the house prior to removing him from school, our relationship needed to be rebuilt and the trust renewed. We had special time every evening, when I would massage his back. For a while he became very clingy, he loved to smell my perfume because it reminded him of me and he almost rejected his father. I will admit that I was worried but then thought about how bonds needed to be regenerated so for the first time in my life I was quiet and just reassuring. I doubt that the boy now can remember being like this which just goes to show how far he has progressed.

The boy's love of computing and all things I.T and our acceptance of this has been especially pivotal in boosting his self confidence. The book describes this as Pleasure and Mastery in that he is able to participate in something that he feels confident in. I think that the portrayal of computing and gaming is negatively portrayed by the media and I used to worry that it wasn't a good outdoorsy hobby such as football or scouts. However, the boy's gaming community are the most honest, politically aware, law abiding people I have yet to meet. They are entrepreneurial and he has learnt so much from them. It is because of them that my poor husband has to accompany him to various gaming festivals, We no longer treat the computer as a "dirty habit" and something that has to be denied. There is no expectation for him to play sport and win countless trophies. He is our IT expert, it is what he likes to do and at least I always know where he is!

The Seven Confident thoughts are now my guiding principles which influence how I raise my children and also those that I work with. Being able to see where we needed to start from was extremely helpful and I daresay that as a consequence of following this, I no longer worry about consequences for bad behaviour  because I guess he has no reason to misbehave anymore.

Every school should have the Saint

Been away for a while on purpose because I wanted to see whether I would be reporting good or bad news in regards to the boy's transition to the unit. His hours were increased this term from two mornings to 16 hours over a few weeks. I am delighted to say that he has happily attended from 9am -1pm four days a week. Never thought I would say this.

To be able to hand him back over to the local authority and trust their expertise was something of a big ask where we were concerned. His key worker whom organised the EHC plan also recognised this and was full of reassurance. I will never forget that afternoon, leaning my head against the window as she convinced me over the phone that this unit was a good place. I was so scared, as previous posts will testify.

And she was right. To date the boy has started to reconsider further education, he has watched a year 10 boy do "work experience" at the IT department, to inform  me that actually the IT department come to the unit for "work experience", however he is looking forward to his turn at this. He has gone out on an outing with the other pupils, asked to borrow his grandfather's Tom Clancy book, he has even played rounders.

Every morning I have dreaded getting up wondering if  will he be making  that terrible noise as he refuses to go. I don't think I slept that well to begin with. We have had days when he will be quiet or rather apathetic, these are normally after a change in routine or a plan that he agreed to initially but then  feels he can not meet. Luckily the Saint and I have another option to offer that is more comfortable but keeps that attendance going. The educational psychologist when he assessed the boy wrote that it was better for him to attend a few hours every day rather than have long breaks because that then breaks the cycle of anxiety about attending. The Saint has told me repeatedly that his mental health is more important and neither she or us want him to stop attending regularly because he is being forced to do more than he can achieve. Such kind people.

He is studying English, Science, Maths and IT thus there is not much need for such long school days. The pupils also have social time if they wish. Some of the pupils such as the boy have a desk in a quieter room that is off from the main room and he will often spend his spare time watching documentaries which impresses the Saint no end. There is also an amazing fully equipped sensory chill out room which I think should be for the parents. Often if pupils are worried the Saint will take them in there to talk to them. Their school days start later and end before the rest of the school so that they do not have to cope with the hustle and bustle of school life. They are encouraged to attend mainstream lessons too with support but so far the boy feels unable to do this, again there is no pressure.

I often see the other pupils (all of them are boys) and it amazes me that they have all come from similar paths as ours. They smile, open the door for me and just seem so relaxed and comfortable. The boy gets on well with a couple of them, though quite clearly none have been invited over for tea as yet!

He comes home from school, cheeky, boisterous and keen to get some words in edgeways if only the girl will let him. I do not think this has ever happened in his school career before. The Saint and I often end our meetings stating  that every school in the country should have this facility, now if someone could just pass me my magic wand...........................

Clairexxxx

Me

When I first contemplated home educating the boy, my first fear was that I would be with him all day everyday without a break. I had enjoyed those beautiful moments when the front door slams and there is nobody else in  the house and time was available to be spent as I wished. Such bliss. Then I felt guilty for feeling this way.

 

I had researched home education and to me it seemed that the parents I had read about could cope with the every day noise, demands and chaos that children bring all day every day. I, on the other hand had insisted on just an hour or two every day where I could have a bit of time to myself just to think. This was easily achieved when they napped or went on to school and I had my days off from work. The new scenario I was considering was going to be hugely different. Even my friends told me that there was no way they would home educate their kids as they would end up going mad.

 

Step in Ross Moutney, https://rossmountney.wordpress.com/ whose book "A different kind of education" described how some days she too was just too overwhelmed and needed a break, it was OK to feel this way and perfectly normal too.

 

The beauty of home education meant that the school day is much shorter, thus I could incorporate that much needed time to exercise or sew without the worry that I SHOULD be schooling the boy.

 

The home education journey taught me a number of valuable lessons and we aren't just talking about the metal reactivity series here either.Ever since I had children I have battled long and hard with my inner sloth about HAVING TIME FOR ME. I would feel guilty for having it and grumpy if I didn't. Relatives and friends would all tell me that I needed to relax and have time for myself yet I did not know how to spend this time efficiently to help me feel relaxed. I was easily distracted by a dirty kitchen floor, pile of ironing or I would just pass out on the sofa and snooze due to shear exhaustion. Dr Laura Markham also describes this as the  Sacrificing yourself on the Alter of Parenthood disorder, where parents forget to give themselves the attention they need and so find themselves impatient and negative towards their children. I had this in an epidemic proportion and yes I did have a bit of a reputation as a shouter. It made me wonder whether the boy would want to spend all of his time with me too.

 

I tried numerous techniques to try and RELAX, something else that I was determined to become good at in my never ending quest to be the perfect mother. Meditating was one particular activity that would just drive me nuts because I would either fall asleep or if I tried to imagine being in a lovely place, I would then wonder what the weather was doing, where the children were and feel guilty that they were not in this lovely place with me!

 

There is a fantastic lady, Rosey#PNDandMe who recently held an hours session on Twitter looking at depression and self care and how vital it is that as parents we take the time to do activities that make us happy. We have to keep our petrol tanks full so to speak so that we have the energy to look after our children. This has made a lot of sense and it is widely recommended in all parenting courses and websites that for our children's wellbeing, ours matters too. I imagined my daughter as a mother, I would hate for her to shout at my future grandchildren so if I role modelled to her that I looked after myself then that would guide her as she grew up too. I also read somewhere that, rather than relying on technology, alcohol and TV, we have to go back to our childhoods and think about the activities that we liked to do as these are the ones that can give our minds the most fulfilment.

 

You may have already guessed, that as a child I was a bit of a bookworm, but I also liked to sew too. Counted cross stitch was a particularly soothing activity because I had to concentrate, thus my chattering monkey mind was kept quiet and my "petrol tank refuelled." Books have  also become very welcome friends again and it is a bit of a strap line in this house that "I will just finish this chapter" to avoid doing chores.

 

I have finally learnt to be kinder and more compassionate to myself, there are no more quests to be perfect, good enough is well good enough. The house may be dustier, dinners may be simpler, but the time I have found for me, has strangely increased my time to enjoy with the children and cuddle up with them as well as finding time to go to the gym regularly and voluntary work. The children have also welcomed time for them to do what they want without the structure and routines imposed on them. The girl is learning how to bake and the boy, well he is still attached to his computer but is doing very well in meeting his attendance at his school. Compassion is also about praising yourself when there is no time and you have a million other things to do. I will now often congratulate myself on a job well done, acknowledge to myself that some days are harder or  tell myself that I will be able to make it to the armchair soon for that much needed chapter. It is like being your very own best friend that encourages you along.

 

 A year after educating the boy, I was talking about the success of it all with a friend and she congratulated me but then commented on the strain that I must be under because I never had time for myself. I remembering looking at her strangely, much like the established home educating mothers looked at me when I first started. Maybe I should tell her that she needs to relax...............

 

Clairexxxxx

A Brief Guide to Parenting a Child with Dyspraxia

As a local co ordinator for the Dyspraxia Foundation, I have recently had a few enquiries from parents whose children have been diagnosed with Dyspraxia who wish to know what to do next.

This has had me stumped for a few minutes as I rack my brains trying to remember what I did when the boy was diagnosed and I am sure that every child and family's situation is different so what I did may not hold much significance for the parent I am listening to. Our journey to diagnosis had been filled with a lot of personal  anxiety that somehow our parenting was to blame as the struggles to manage the boys meltdowns brought us to the doctor's door. Others arrive via school  due to co ordination difficulties. Occupational therapy or speech therapy as a result of the diagnosis may have been offered so there are opportunities to discuss the diagnosis and plan with health care practitioners a way forward. Yet the hows and whats about living with dyspraxia probably won't be discussed in appointments so what  then? 

 

Here are some ideas to get you started. Remember that initially you may need time to adjust and process what Dyspraxia will mean to you and your family. I remember feeling shell shocked when the boy was diagnosed with Aspergers, even though I suspected that he was on the spectrum, to have it actually confirmed was still a shock. The Dyspraxia diagnosis came as more of a relief that I was not going mad.

 

1. Read, read and read: as you know I always read around the subject and I do remember taking a pile of books out of the local library. Authors such as Amanda Kirby, Mary Colley are well renowned experts, Victoria Biggs is also a good read because she delivers a personal account of living with Dyspraxia, my husband who tends to leave the reading to me, found her book very helpful. I found the books particularly beneficial because after a few years of worrying that I was being paranoid and that my experiences were individual to me only, it was a huge comfort to find these described in the pages I was reading.

 

2. Build your circle of support; Hooray, we have a group in Hampshire now and our first meeting gave much neeeded opportunity to share experiences and relief that we are not as isolated as we thought. I have certainly felt alone at times, just longing for an understanding ear thats linked to an empathetic mouth rather than the usual "he'll grow out of it, you need to make him join a club, or play sport" reaction that I sometimes get. Find your local support group by contacting the Dyspraxia Foundation. That feeling of being believed, supported and never judged is indescribable.

 

Family and friends are invaluable too. However I have found that whilst I want to read and expand my knowledge about Dyspraxia,  my husband prefers to hear about it via seminars, articles on the radio and easier books. Other relatives, although they know that the boy is dyspraxic, prefer to treat him as they always have done and are just very understanding if he does not want to join in an activity. They feel that they do not need any further information.

 

Those that are not interested, sympathetic or do not believe that Dyspraxia exists, well refer to the above circle of support,  they are your allies.  Remember that Dyspraxia is not as well understood as other conditions and if there is little opportunity to inform, spare your precious energy. Sadly for some people, helping children in need basically relates to baking a few cupcakes and seling them once a year for the BBC organised event. My boy in particular challenges beliefs about school attendance whilst his obsession with  computer gaming is portrayed negatively by some of the tabloids thus we have been targets for supposed well meaning judgemental comments and we have had arguments with other people too. We are very selective about who is in our circle.

 

 

3. Identity the key areas where your child struggles and use resources from the Dyspraxia Foundation to help you and your child manage. Time and time again I have looked up how to help the boy when he reaches developmental milestones from riding a bike to starting secondary school. There is information for teachers too and you may find that you are teaching them (the teachers) to begin with if they have not had previous experience. This does feel very disheartening and worrying but communication about your child is paramount and will certainly help you feel more in control so that unnecessary incidents are avoided. If you are home educating, you are in the fortunate position to be able to totally adapt your child's education to support his needs. There are also some amazing sites that can support with this. The link below is for a facebook group that I relied upon a lot during our home education days. Don't forget that you could also apply for the EHC plan if you are home educating too so that you can receive support from the local authority. The group also is a good place to find out more about this

 

https://www.facebook.com/groups/332898013464344/?fref=ts

 

4. Look after yourself.  I can not say this enough. We have all heard that on a plane, parents need the oxygen masks on first before the child and I think this analogy is so relevant to staying strong and coping with a child that has dyspraxia. Again it all depends on the individual experience, but I have had great days and there are times when the boy has been so anxious it has taken all of my emotional energy to move him into doing something that I am left too frazzled to take part in the experience with him or continue with my day.  We went away recently and he was fretting because there would be no  internet. He had tummy upsets, he wanted to know exactly what was going to happen whilst we were away and even told me that he didn't want me sitting around reading my book because I could do that at home. He struggled with the concept that it was also a little holiday for me and I wanted to relax a bit. When we went for a walk, initially he didn't want to walk alongside his father and sister, he just wanted me, all of my attention was taken up listening to him chatting away. A day or so later and he had relaxed enough to be more independent and not so needy. We met up with relatives and they were so impressed with how well he was doing, which was great but inside I was absolutely exhausted and needed another holiday! The family dynamics and the emotional effort of parents is eloquently described by Gill Dixon in her book, Dyspraxia the Foundations. Again it is reassuring to know that I am not alone in how I feel. The boy is particularly sensitive to my moods so it is doubly  important that time is taken to indulge in exercise or my favourite hobbies so that I feel emotionally well equipped to care for him and his sister.

 

I hope that this has been helpful. There is a good supportive community out there and for those who are not affected by Dyspraxia a smile, nod and a hug works wonders if you meet anyone who is.

 

Clairexxxxx

 

 

Tiny Sparks

Received the dreaded phone call last week, from the Saint who stated that I need to go and meet with her this week to discuss increasing the boy's attendance. Oh how my lovely little bubble of feeling all was well was popped. Of course he needs to increase it, he can not get very far in life on two mornings a week, but I wonder what their goals are?

I am sure that I will be told that there are other children that qualify for his space within the unit and that could attend full time. I am also sure that I will be told that he is a very clever lad who needs the lessons so that he can achieve their recommended number of GCSES. Maybe I could play some type of Bingo in the meeting whereby I tick off the above sentences when they are spoken to me.

Time marches on far too quickly for the boy. In two years time we will be looking at colleges for him to attend once he has finished his GCSEs. He is adamant that he does not want to spend any longer in education than necessary, unfortunately for him and us it looks as if the battles of trying to get him motivated and engaged aren't over yet. Year 7 was so awful in terms of him becoming unwell that I feel we lost a year. It then took another year to help him recover sufficiently to get him into the unit but his health has then fluctuated due to the stress of starting somewhere new, coping with the noises and other students in his class. His sleep is all over the place, because we changed the medication to bedtime so that his nerves were better under control when he woke up. He has only  just started again to suggest activities that he wants to do when he is not at school, so he is no longer totally wiped out by attending those two mornings. It is a bit of a roller coaster where his energy is concerned. I feel as if I am playing catch up all of the time.

The boy has hated school all his life and as a consequence the misery of getting him in has not made our life a bed of roses either. The thought of having to go through the battles again to get him in just fill me with dread. Life was so easy when I home educated him and yes I can hear you ask why don't I do it again? Can I tell you that I have already noted the picture of the "alternative " provision leader at the school which he attends? She looks really nice. I do not feel so scared if we have to go down that route. I have heard that resources such as "blended learning" exist whereby work and materials are sent from the school. This is my Plan B, locked in a dark chest somewhere in the back of my mind just waiting for me should I need it. I have negotiated my way through harsh educational bureaucracy up until now and I am no longer afraid of being creative in order to ensure that he is educated but most importantly kept well emotionally.

Plan A, well currently the boy will also meet with the Saint and say what he feels he can do and then build from there. He had already muttered to me about increasing his hours before the phone call as he likes it there and feels comfortable. There is a small chance that this could work. I have found that if I keep quiet and not talk too much about school and my own expectations of him, he will initiate meeting his goals himself. There needs to be no talk of rewards, no lectures about the rest of his life, just an acknowledging nod and a smile so that  his tiny tiny spark is not extinguished by over enthusiasm. I just hope like mad that this is enough. My patience is certainly being tested!


Now for a corny moment, hope you guys don't mind, it is something that I have been longing to do for ages on this blog so here goes:

My sister and I during a rather dark 2013 started to send each other songs of the week to help us make sense of the craziness that was at times suffocating us. The songs could motivate us, put our feelings into words or cope with  strong emotions.

Hence my song this week is "Dancing in the Dark" by Bruce Springsteen. My gym instructor has been having the class dance to this for the last three weeks and it is a song very close to my heart. Not so much in a starting a relationship perspective but it just takes a small action to start a change. I do not know where my actions will lead, but I am willing to try rather than wait for it to happen to me. So far this has proved rather exciting and not at all the disaster that I had anticipated!

Enjoy, Clairexxxx

Once you have met one dyspraxic, you have met one dyspraxic

Well hello again! It's been a long time since I last blogged, however I have been involved in a few activities increasing awareness of dyspraxia which have taken up a lot of energy so as ever the subject is never far from my mind.

Where to begin, well last week I presented a quick presentation to my colleagues about Dyspraxia and how we as Health Visitors can identify it earlier and start supporting families affected by it. There was so much to say and I didn't want to deliver it from a professional viewpoint because I felt that would make it something that existed in a world where we looked in from time to time. There are also a lot of changes locally within our NHS trust that aim to improve services for the clients and thus I felt that last week was an ideal time to tell managers how it is for families affected by Dyspraxia and how these changes could improve day to day life for them.

The day before the presentation, our local radio station was presenting a piece about "clumsiness" and the Dyspraxia foundation contacted me to speak about it on the show. Unfortunately ( well actually thankfully) I was not at home when they phoned, so the Vice Chair stepped in. The link for the show is here

http://www.bbc.co.uk/programmes/p02jm6p1 The piece starts after Cold Play's song at about 31 minutes.

In the show the Vice Chair, Gill Dixon speaks about the variety of symptoms that Dyspraxia covers and the huge difference as to how people present. She stated that once you have met one dyspraxic, you have met one dyspraxic and this sentence really resonated me with over the last few weeks.

When I tried to organise my presentation, I was amazed at the amount of discussion that exists regarding just the diagnosis. The medical profession tend to refer to it as DCD (Developmental Co ordination Delay) but there are suggestions that this tends to focus too much on the delay in movement skills rather than the emotional and planning aspects too. I also read somewhere that the diagnosis of Dyspraxia is not given by some professionals because a condition that covers just so many symptoms is not possible. I have observed on a Facebook page that I am part of that some paediatricians are now just diagnosing joint hypermobility syndrome instead because they can only give one diagnosis, most bizarre and something I will query because I would hate to confuse people anymore than necessary.

Later on in the week, my son was queried by the Saint and the rest of his teachers because they thought he was dyslexic rather than dyspraxic. His spelling was showing some worrying patterns despite his amazing ability to read. The Saint asked if he could tie his shoe laces and school tie, to which I replied that he could, he could also ride a bike and swim too. As I left, I panicked that maybe he was not dyspraxic after all, which then made me query the whole validity of getting him diagnosed, I had been treating him wrong all these years, never mind the blogging and all the other involvement that I have had with Dyspraxia!

At the weekend, we went shopping, the boy as ever clambered onto the escalator after waiting for the right moment and clung on to the rail for dear life with both hands as we descended. Yup, I thought to myself you are dyspraxic, no doubt about that.

Our local support group also met recently for the first time. Not many were able to make it but those that did, I feel benefitted as did I to be able to share stories and experiences. The children and adults had had a range of symptoms which again aligned with what Gill had stated. There were also sadly tales of the difficulties experienced in getting the vital help and support from health services and education. It still is a very poorly understood condition, unlike dyslexia and this appears to be nationwide. I worry about parents that do not have the confidence to challenge professionals or access services independently and I am in a privellidged position as a Health Visitor that  I can speak up for those that I meet. I have also come to realise that it is not just about getting the diagnosis, its more important that there are strategies to enable the child and family to be able to function and feel that others are understanding around them so they do not feel isolated and worthless. I remember only too well, when we were told about the boy, that  I still did not know how to get him into school and manage his meltdowns. I just wanted that information, nothing else.

As I have stated in previous posts it is the support groups, Facebook groups that often reassure and give you the strength and insight as to how to carry on when you are coping with a meltdown due to a spontaneous change in routine or you just need advice as to where to buy special cutlery from. I really hope that alongside other bloggers and the Dyspraxia Foundation it won't be long before families and people with the condition feel that they are supported and life isn't such a big struggle at times. I am sure that we will get there someday.

A balancing act.

Had one of those conversations with the boy last night that made me again acknowledge his level of dyspraxia. He was lying in bed and I asked if he wanted the door closed to which he replied that he needed some of the light from the landing so that he knew which way round he was lying!

I pointed out to him that he has been lying in the same direction for pretty much a year now, as we changed beds last spring. Surely by now he knew where his head was, this was not the case. We had a little chuckle that he was soooooooooooooo dyspraxic, quite a common phrase in our house and I bade him goodnight.

Isn't it amazing that something so instinctive for me and all of us neurotypical people out there is missing in people with dyspraxia? The boy for years has always required a light at night time so that he knows where he is, something that until recently I could not understand. When he sleeps in other people's houses the difficulties are further increased, he has fallen out of bed a few times because he can not feel where he is in relation to the bed.

The skill that we have in order to know where our body is, is called kinesthetic awareness. This relates to the information from the senses which inform us about our body, where the parts are, the space between our body and objects around . It can also tell us about the direction we are moving in and where our bodies end and the world begins. Whenever the boy had a growth spurt he would become particularly clumsy as he would need to learn that his legs were a bit longer which would then require him to concentrate more on  moving them so that he would not fall over.

Before he was diagnosed with Dyspraxia, the boy was seen by an occupational therapist who diagnosed him with Sensory Integrative  Processing Disorder. There is a wealth of information about this and I could describe it in more detail but I feel if I describe it as how it affects the boy, it will be clearer.The boys body recieves incorrect information from his muscles, hearing, vestibular and tactile senses which means that his development is skewed because he responds to stimuli differently. The visual sense is another route that can be affected too within this disorder. Children can also be high seeking so they want activities that require lots of stimulation ie rough housing, loud noises, fast swinging so that they can get the appropriate amount of feedback to their bodies. Or, like the boy they can be low seeking which means they avoid most playground apparatus, parties, brightly lit places, any type of physical contact because their senses are overloaded. Because of the misinformation,  the boy's body learnt to adapt his responses as he felt would be correct for him. This means that although he responds differently he gets to the same place as everyone else, just in a different way.

So something like holding a pencil for example needs him to ascertain how hard to grip it. He is over sensitive to touch,so  he would hold it too lightly but then that would mean it wouldn't be enough pressure to make a mark on the paper, so he would need to reprocess it all again so he could then function to use it. However his motor skills are affected too, so he would need to work harder to manoeuvre the pencil properly to write. Oh  hang on, he can't balance either to sit on a chair and write at the same time,  so more energy is needed to keep him upright, the pencil and paper still and now he is expected to look up at a board and copy whilst managing everything else. Who would have thought it could take so much work? Add to this  a lower sense of self esteem as they observe their peers manage everyday tasks effortlessly and it is clearly obvious why intervention is needed early.

For a while,  he had occupational therapy to help stimulate his senses properly. He would sit on a large swing in the middle of the room and be pushed to help him gain more control over his balance or his limbs would be brushed to help him desensitise. When he was in year 6, he decided that he didn't want to be different from his peers so the therapy stopped. I now slip the therapy  discretely into his daily activities, such as a weighted blanket on his bed so that he can get the correct feedback from his body when in bed and I also get him to carry heavy shopping bags to stimulate his muscles. We have muddy dog walks where he has to walk on uneven ground,  walk along logs to avoid boggy areas the whole time stimulating his balance (vestibular) senses.

The whole time then, these children with Dyspraxia are concentrating harder because of having to filter out incorrect information about their environment and then they need to plan and organise how to respond appropriately.  In my boy's case this even needs to happen when he's in bed! No wonder he's tired.

Let It Go!

I want to sing this blog to the very popular song from Frozen, however the thing that I need to let go does not resonate around me concealing my feelings and challenging everybody else....that was last year!

 

So, the Saint was off sick last week along with the boy's other teaching assistant. Disaster. He is currently attending two mornings a week, which has been wholly supported by the teachers. It has been heart warming to come and collect him and observe him interacting with them and he has been very positive about the other pupils there as well. When I heard the news that the teachers were off sick, I in all my non dyspraxic, non Aspergers innocence thought well that's not too bad, he can still go in, after all, its only three hours and all of the other teachers are lovely.

 

Wrong, Wrong , WRONG! No Mrs Quirky, your son has Dyspraxia and Aspergers, he can not possibly cope with change of teachers especially during this particularly sensitive period of adjusting to a new routine.

 

 Eh? Surely he can manage a little bit, c'mon, it's not as if he has to cope with a class full of kids is it? There must be some bounce in him somewhere. Apparently not.

 

So he had the week off.

 

There is a part of me that finds it hard to explain why my son is struggling in the  best specialist  unit in the city. Despite him being on anti depressants and having these diagnoses, I sometimes see a cheeky 13 year old lad who is bunking off school. I really feel that he should have a limb wrapped in plaster just to remind me that I need to be patient and understanding. No wonder people with mental health illnesses struggle so much. The boy even moaned that I was not a good advocate for the Dyspraxia Foundation if I couldn't even listen to him properly.

 

The Saint phoned me up this morning to let me know that she was back at work and looking forward to seeing him again tomorrow. I admitted to her that I had been a bit like a bull in a china shop  in trying to encourage some contact with education and she reassured me that the boys behaviour was normal for his condition and that the other pupils had been just the same. She did not want to rush him like he had been previously because that's what had ruined his school attendance before. It dawned on me that if I kept poking and prodding him in all of my eagerness, it would mess up the Saint's fantastic work with him. Maybe I was underestimating the amount of effort that it took for him to attend. Looking back, we have seen him do well at something like sailing and innocently encourage him to do a bit more to find that he drops out completely, there just is not enough energy to meet the challenge. We then witnessed the same behaviour with horse riding, cubs, guitar lessons, hockey and so on. Quite clearly, there is a very limited amount of bounce.

 

The boy has remarked as well that he feels that our affections for him are entirely based on whether he attends school. That is not what I want him to feel, unfortunately he does not seem to notice the never ending supply of hot milk, crumpets, pocket money and loving words that come his way as well. It is very difficult as stated a million times before in this blog to accept the deviation from the normal path of parenting and I imagine myself writing lines as a punishment every time I react in surprise that he does not respond to situations as I would have expected. The L plates are still firmly attached!

 

I also  never anticipated that I would have a child whose inner motivation goes  against the grain of how I would normally parent in regards to praise and encouragement. I think that has been the most bitter pill to swallow. There has been articles in the parenting press recently about the "dangers" of over praising in that the child is anxious about their performance at an activity rather than the taking part. I try not to go overboard in my encouragement and I certainly do not demand that my children achieve top marks in all subjects. The irony is now I am trying not to be an over anxious parent which increases my anxiety even more!

 

So, I am letting go of the rope that binds me to the anxiety of him engaging with the education system. The Saint knows what she is doing and I do not want to make her work harder. I am most fortunate that I can faithfully pass the worries to her. I promise to look interested peers in the eye and say that yes the boy is doing fine on X amount of hours per week and be 100% behind him. Just need to let go.........................................

Even the Health Visitor has Parenting Problems

So to carry on from my last post, the boy went into school. For two mornings. This morning I rocked on up to his room and he told me that he wasn't going in.

 

Despite having a good day yesterday and telling me that he liked the unit because he could get his work done, this morning he wanted to return to home school.

 

Except there is no return to home school. I have given away the books, signed him off his courses and all my hopes are pinned on this unit. I want it to work so very desperately. For those two mornings, I relished the school run and seeing other teenagers in their uniforms,  knowing that  I had one too.

 

 I responded by not shouting at him like I used to, but I took away his computer, ranting about how disappointed I was and it was only 3 hours. As I tended to my chickens I moaned to them, why me? How the heck can I inform new parents about bringing up their kids when my boy won't go to school? Some role model I am!

 

Plus , I had just given a whole 15 months to resurrecting him from the depths of his darkest despair to have it all wiped away within two days. My boy felt valued by his family,  he felt loved and listened to, he was starting to enjoy life again, how could we go back to the tantrums, the shouting and my resentment that I had to devote so much energy to him and leave nothing for my girl. It just wasn't fair. But he is my boy at the end of the day, I have to look after him, I am his mother and I have to do what is right by him, me and my family. The whole point of returning to school was so I could have help in educating him with the specialist support from the unit. So I phoned up the unit and told them.

 

Oh my word, I have now come to think of the unit as an oasis in a desert. Tired, battle worn parents arrive at this place to be gently lifted and soothed as they are reassured that they will be listened to.  I am now going to refer to the boys teaching assistant as The Saint, because this lady knows her stuff and she is just so KIND! She half expected the boy to have a wobbly day, he was working so hard emotionally and physically by attending, no wonder he was tired. She wanted him to have a day of rest today and to try again tomorrow. He could have his computer,  we weren't to expect too much from him and due to the fact that he was no longer by my side in the unit, she said she recognised that  they had taken his security blanket away. The Saint totally gets the boy.  According to her, these children have had a long time of not being listened to. I guess with a late diagnosis of Aspergers that the boy had aged 12, it is a long time.  I certainly felt like I was reading the wrong parenting manual where he was concerned.  No wonder the Super Nanny tactics never worked!

 

But even with all of this support and diagnoses, why do I feel as if I am a bad parent if he does not attend school? It's totally crazy. When I home educated I had none of these insecurities except that I was not working so didn't meet society's expectations of me there. Now I am not meeting the education authorities expectations. I guess its a case of the fact that by recognising that I am a bit of a people pleaser and the ensuing anxiety that develops if I am not performing as I should be is going to  be my biggest demon to beat in all of this. I have not slept all week. Every morning I feel sick with nerves until he is in that school. This is the first week, goodness only knows how long it will be before he settles in.

 

 I am forever telling my families to be kind to themselves during troublesome times, to be empathetic towards the child, try and see it from their point of view. I have had a psychiatrist and the head of special needs telling me that the boy was very unwell yet I admit that sometimes I find it difficult to cope when he refuses to do what is asked of him.

 

 The Saint  practises her approach with kindness and compassion. She recognises that the boy and myself are going through an incredibly intense time as we embark on this change. The boy clearly demonstrates that this works best for him. So I need to take a very blinkered approach to life at the moment and accept that being a "good parent" is not about my child's school attendance. It is about listening and responding to his needs so that he will feel more confident in the future. I also need to listen to myself and pile on the loving kindness so that I have the energy to keep being strong for him. I think we have a rocky road ahead of us, but if I start taking the advice that I so eagerly give to my families maybe our path will be a lot smoother.

 

xxxxxx

New direction

Tonight I write wondering how life will be from tomorrow.  Its a big day in the Quirky house as we leave the safe, comfortable routines of home educating and venture back into a school classroom.

Not just any old classroom mind you, it is a specialist provision for autistic children within a secondary school. The boy is the 9th pupil there, the rest are also boys ranging from years 7-10. The ethos is that they access some lessons with their other school peers whilst being supported by specialist teaching staff and having time also to focus on social and interaction skills. The unit is fairly new, they have thought about the challenges that these children face and ways of overcoming them. For example the pupils arrive later and leave earlier to miss the crowds, the homework is completed within the school day in the unit so that their time at home remains interruption free. Even the colour scheme is muted and there is a sensory room for the pupils to use to de sensitise or just have their lunch in.

When we visited a few days ago, we felt that this had been built with the boy in mind. We were already relieved because he had come with us to see it and proceeded to talk to the head and assistant that showed us the unit. He relaxed and commented on how lovely it was. The specialist assistant was just fabulous with him, she didn't patronise him and gained his trust immediately.

The head then asked if the boy could start full time this week. We had been led to believe that there was meant to be a meeting about integrating him very gradually and I queried this too. We also felt that putting the inevitable off wasn't going to gain us anything and that this time round, it could only work in our favour. The boy balked at this however, to the surprise of the teachers,

And there it is, the age old issue of control rearing its unwanted head yet again. The head asked why the boy felt he couldn't start full time and so I for the first time ever stated that there was a control over his time anxiety that stopped a lot of plans from going ahead. The boy agreed with what I said and the specialist assistant totally agreed that this is normal for autism. So we settled on 3 hours a day and building up from there.

All weekend we have watched the boy for any signs that tomorrow s first session will happen or not. I doubt I will sleep tonight. I have already been accused of nagging him as I sang the sun will come out tomorrow from Annie, innocently after hearing it on the girl's ipod. That was a bit of a bad choice I admit!

We have been down this path so many times before, all hopes raised to have him slamming on the brakes that very moment we reach the party, get to the school gate or wake him up on that fateful day. I  have been very conscientious, ensuring that forms and his bag are packed quietly(previous experience of involving him was not pleasent). I told him casually at lunch time what time we would be leaving and reminded him that he will earn a bit extra pocket money this week as a reward. I have thought back to all of the previous advice I have been given, trying to remain nonchalant but inside just feeling obsessed with worry.

If he makes it, well dreams of returning to being a mother whose child attends school and who can therefore work will be achieved. I will be back in Italy so to speak.

If not, well disappointment and fear of what happens next will just raise up and maintain their usual position in my life. The specialist assistant did say as we left that he could leave earlier if he needed to so I can offer him that life line if I am facing refusal tomorrow. I guess I will have to take what he gives and work from there, plus this time round we have help from professionals so hopefully my Italian dream will be achieved in the distant future.

It is so hard not being in control of my life. I always worry about being judged that I can't get him to do the simple act of going to school. Home education has been great, but I am not that way inclined and I need to know that he can separate from me to build his own life. Oh if I could only gaze into 24 hours from now and see the other side!

I will keep you posted. Xxxx

Coping with Loss

Hello everybody and welcome to 2015!

 

Bit of a sad post today, unfortunately events such as the death of a loved one never happen at an appropriate time and we at the quirky house suffered two significant losses over the festive period. I am aware that I have not written a post for quite some time and to be honest as a result of the sad events, I do feel a little less motivated. At this time of year, quite naturally, there are several sites discussing new years resolutions and looking forward, so for those whose Christmas did not bring the joy that is expected, I embrace you and invite you to sit with me awhile.  Thus because this is also a parenting blog, I thought I would concentrate today on helping children cope with the death of a loved one, as until recently, I had no idea as to what to do until the time arrived.

 

So, just before Christmas, my grandfather passed away. It was the same day to a year that his wife, my darling grandmother also died so we found ourselves in similar circumstances for a second Christmas running. Both children were very close to my grandparents. They had spent many a happy time visiting the flat in which they lived. The girl and my grandfather would be in hysterics as they both could not hear very well and would just spend the time shouting "What?" at each other. The boy worshipped him  as a celebrated Naval hero and had planned to take him to the submarine museum in the hope of my Grandfather sharing some exciting stories with him.

 

When the news came that my Grandfather had passed away, I initially had my own feelings of shock and sadness well up before I could even begin to communicate it to anyone else. My children are very perceptive of my moods, so I knew that it would not be long until they would sense that all was not right with the world. I decided to tell each child individually because I knew that the response would be different and I wanted to ensure that I was there for them.

 

Death is not something that is ordinarily discussed in day to day life especially with children as we want to protect them from sadness and fear of our own mortality. The girl has found this particularly hard as she has seen her rabbit die and learnt that this eventually happens to us all. We have always been honest about it with them, using terms such as they stopped breathing, the body doesn't work anymore rather than they fell asleep. The parenting website Netmums has some excellent resources about helping children cope and they suggest that by observing that  flowers wilting and dying in a vase, a young child can begin to understand the cycle of life. The National Autistic Society also advocates this for children with Autism http://www.autism.org.uk/living-with-autism/at-home/death-bereavement-and-autism-spectrum-disorders.aspx. The boy especially preferred the natural science behind death in that the body stops working whilst the girl is more visual and understands it if she sees a dead flower or pet.

 

The circumstances that surround the loved one passing away can affect the grieving process. If they have a terminal illness, the child can be perhaps be prepared, again by letting them ask the questions that they feel are most important and answering them honestly. It is also Ok to cry in front of them, you too are sad and explaining why you are sad will ensure that they do not feel that they are to blame.

 

As expected, both children reacted very differently. The boy was very calm which I had anticipated because his emotions always manifest in his behaviour later. This is common in children who are on the autistic spectrum. I kept to his routines and informed him of what would be happening so that he knew what to expect. This is especially important because we are a very expressive household and I didn't want him surprised by mentions of funerals, other people's grief, or me bursting into tears. There is also the change in routine as you support other members of the family to consider. When my grandmother passed away a year ago, my grandfather required a lot of help, so supporting him and my father shifted our familial patterns for a few months afterwards. When my other grandmother died 10 years ago, I was not aware of the boy's difficulties, so threw myself into helping my mother. My friend who looked after him whilst we attended the funeral said that she had never seen him so unsettled. Again it is extremely difficult when you just want to curl up and cry to expend more energy on caring for a child. I guess the strength to go on comes from somewhere, it is never easy. I wholeheartedly recommend that more compassion towards oneself and having that curl up time is absolutely necessary during times like these. He did not want to attend the funeral because he said he wanted to remember Grandpa sitting in his chair asleep with his headphones on rather than seeing a coffin. Bearing in mind that I have a large family and it would mean seeing other people, which he finds difficult at the best of times, I didn't push this.

 

The girl sobbed her little heart out. We lay on my bed and I held her as she cried. She went into school the following day, I thought that she was alright so didn't pre warn the teacher, but she started to sob again and was given time with the emotional support assistants that they have there. We aren't a religious household but the girl has found that it has helped her to think that Grandpa is looking down on us and when she went to a Christmas service with her school, she said a quick hello whilst waiting in the church.

 

I felt that the girl was old enough to attend the funeral with us. She was initially reluctant due to her worries about seeing people crying and the ghoulish scenarios surrounding death that children like to talk about. I told her everything that would happen, the procession into the church, where she would sit, what would be said and how we would leave the coffin there. I dispelled her myths about coffins and reassured her that she would be surrounded by people that love her and would comfort her and that it was Ok to cry. She had a lot of questions about the crematorium which is a difficult concept to explain especially when you are grieving, but my husband was calm and honest with her and she was fine. It helped enormously that another similar age cousin was there as well, so they sat with each other and gave each other support.

 

Then the cat died.

 

He was run over by a car. Thankfully a kind lady took him to the emergency vet and because he was micro chipped we were informed about what had happened to him. So again, we told the children individually what had happened. He was a much loved pet, especially by my son, and even though he was a cat, it  was a significant loss to the family. Thus we are talking a lot about what we are feeling at the moment. My son missed him today sitting on his school work and we are finding it strange that we can leave food out on the work surfaces.

 

Again, Netmums has advice on how to help with the loss of a pet. Euthanasia is discussed too, and the opinion seems to be that it is best to leave the children out of the room until the pet has been put to sleep and then they can see it at peace. They also write that children react in different ways and it is best not to force the subject onto them if they are not ready. The girl prefers the dog, and she stated that she did not feel too sad.  She has been really mature towards me though and protects me from seeing cat food in the shops, which is sweet.

 

The boy is keen that we have a memorial for him, but like myself, he didn't want to bury his body or have his ashes brought home. He did not want that to be his last visual memory of him. Our memorial will be a large catmint bush in his favourite sunny spot with a little plaque. I expect that the girl will write a poem for him and we will say our goodbyes that way.

 

There is a wealth of resources out there to help through these very difficult times. Netmums is especially brilliant because it also discusses bereavements such as that of a parent or a sibling which are particularly difficult. There are also charities such as Winston's Wish which have a range of books that can be shared with the child and have trained counsellors to contact.

 

So it is a little subdued in our house at the moment. I am sure that as time passes, we will adjust to the new routines, but for the moment we are being extra kind to each other. Love as ever will get us through.

 

I hope that you all have a peaceful 2015.

 

Clairexx

 

 

Useful Links:

 

http://www.netmums.com/parenting-support/miscarriage-and-loss/loss-of-a-child/helping-children-cope-with-bereavement

 

http://www.winstonswish.org.uk

 

http://www.autism.org.uk/living-with-autism/at-home/death-bereavement-and-autism-spectrum-disorders.aspx

 

http://www.helpguide.org/articles/grief-loss/coping-with-pet-loss.htm