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
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
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