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

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

 

 

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.