As a Health Visitor, I admit that I did not quite understand the role of charities in supporting parents. I naively believed they were full of lovely people that were on the end of the phone for parents to talk to and required funding to keep this support going, but it was up to us professionals to provide the expertise.
Boy was I WRONG!
My first contact with a charity was with the Dyspraxia Foundation. I was having a particularly bad day with the boy and I remembered that I had seen a leaflet in my GP surgery about Dyspraxia when he was about two years of age. I had always avoided self diagnosing through the Internet but that day I googled it and felt my breath sucked out of my body as I read the symptoms. My son amongst other things had always hated having his toe nails cut and there it was in black and white. I took the symptoms to my GP and we were referred to a paediatrician and occupational therapist where the diagnosis of dyspraxia was made. The strategies that were suggested by the foundation were invaluable in the home and school as were the resources sold by them to help inform us. We became members and it is them that I have turned to when things get a bit tougher and I am unsure on how best to support the boy.
I realised the full expertise of the voluntary sector two years ago when the boy suffered a rapid decline in his mental health when he started secondary school. We had a raft of professionals dealing with him but I started to notice that they were giving different opinions and the teachers particularly just didn't seem to understand the emotional impact that was caused by his dyspraxia. I also felt that because we presented as having less need than other students we were denied support and help. The educational psychologist did not believe that anxiety was behind him refusing to go, the GP said it was, nobody was taking any ownership of the situation. It was when a parent support advisor recommended that I do a parenting course so I could learn how to listen to the boy that I realised that I was not being listened to!
I will be the first to admit that I am no parenting expert and that I have plenty of room to improve. So I enrolled on the Netmums parenting course. This was so that I could "attend" whenever I was free as they sent weekly emails for me to read, plus homework to implement at home. The first email described behaviours that the course could help with and I saw that it didn't apply at all to us. He was and still is so well behaved that there was nothing to change. More worryingly, the behaviour he was displaying was described as having an emotional decline behind it and advice needed to be sought. So back to the drawing board again!
After another traumatic few weeks, I posted on the Netmums Coffee house forum, asking for help. I wanted an objective opinion, where nobody knew me or my background. I was at the end of my tether and desperate for some advice. The support advisors on the forum were just amazing. They validated my feelings, they expressed concern for the situation and they signposted me to Young Minds.
Young Minds have a helpline, where you can phone and they arrange for a trainned practitioner to phone you back at an appointed time. They give you an hours long phone call and follow up any advice they give with information that they send out in the post. They are also a useful resource for Dyspraxia. The practitioner that I spoke to was fabulous, she gave me the words that I needed to say to the school and psychologist. Unfortunately she was also horrified at the lack of help we were getting, it seems that postcode lotteries exist for young people's mental health too.
I had all of this help for free. No waiting lists, criteria to meet or differences in opinion about the boys health. The advice was trustworthy and valid for our situation, and I felt listened to.
I now tend to always sign post my families to Netmums. It is evidence based resource and I trust them implicitly. They are always at our professional conferences and they support with a vast range of parenting issues from pregnancy to late teens. The support from other parents in similar situations is amazing and so reassuring that you are not the only one struggling and I have learnt so much from it. I truly appreciate the voluntary sector now and the role they play.
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