J: A to Z of Family Rights and Lives

We continue our A to Z of Family Rights and Lives.  Today, we are looking at the letter J.

Thanks to Sharon Smith, Helen Seth, Jenny Carter, Liz Wilson and Kerry Fox for their contributions and a highly amusing chat about Justin Fletcher and Sharon’s kitchen.

Jekyll and Hyde: As parents, we often swing between extremes. On a good day, with our “Dr Jekyll” head on, we feel as if we may be on top of things at long last. We may have had a good night’s sleep, we may have received a letter or a phone call offering the support our child needs or we may have completed that tedious form that has been sat staring at us for some time. We have even been known to smile at people! However, it can take one call, one letter or one comment to change all of that and suddenly our “Edward Hyde” head appears. For every battle we encounter, our “Edward Hyde” head gets more developed and switching back to Dr Jekyll becomes more difficult.

If someone prefers you as Dr Jekyll, then explain that they just have to ensure they give you no reason to become Mr Hyde. Simple!

Joining: Joining a group, a cause or just joining together – something we often do as parents. Our friends and family offer some support but sometimes it is another parent “wearing the same t-shirt” who provides the best advice, information or shoulder to cry on. Joining a cause can give us a new focus for our anger or frustration (at the system). There are several causes out there, sometimes you just need to find the right one for you, one size really doesn’t fit all.

There is also disappointment, anger or confrontation when you choose not to join or to leave a group. Sometimes we do this for our own sanity or because the timing is just not working for us; sometimes because the original vision of the cause seems to have been forgotten and sometimes it just comes down to personalities and politics. Don’t ever feel bad about not joining a group or moving on; being involved in something that doesn’t sit well with you can be soul destroying. Moving on helps to reignite your passion.

Jolly:  Jolly hockey sticks and all that. Stiff British upper lip. Grin and bear it. Put on a brave face. But sometimes we just want to show some emotion. There are times when it all get too much and you just feel like throwing that bloomin hockey stick right across the room and cause a bit of havoc.

Joy:  Those precious moments when you see and feel something that brings a smile to your face and a glow inside that warms your heart and soul. We love our kids to the ends of the earth and back and in between the rushing around it’s all so worthwhile when we feel that thrill of happiness.

Judgemental: “Are you sure you’re not just looking for problems”, “oh he doesn’t do that in school”, “Maybe if you were more disciplined with him”, “maybe the way you handle her behaviour isn’t appropriate”, “it was just called naughty in my day” or “I’m going to speak to you as if you are incapable of understanding big words”. We’ve all been on the receiving end of a judgemental comment.

Judicial Review: Judicial review is a type of court proceeding in which a judge reviews the lawfulness of a decision or action made by a public body. In other words, judicial reviews are a challenge to the way in which a decision has been made, rather than the rights and wrongs of the conclusion reached. This includes decisions of local authorities in the exercise of their duties to provide special education for children. Judicial Reviews are there to be used. Often, parents fight their LA without realising how common their problem is. Most families are scared at the idea of JR, but there are organisations out there who can offer advice and support.

Jungle: In the words of Grandmaster Flash in The Message “It’s like a jungle sometimes. It makes me wonder how I keep from going under”. It also contains another appropriate phrase – “don’t push me cause I’m close to the edge. I’m trying not to lose my head” If you need help navigating the world of special needs, then Special Needs Jungle is a hugely popular website offering information by parents for parents.

Just: How often do you say “I just want” or “he just needs”. As one parent put it “I just want my kids to have the things other kids have and if that means extra kit/extra time/extra support or whatever – fine. I don’t want special treatment for them for special’s sake, I just want to give them a real and genuine shot at life.” Is that too much to ask?

Justice:  One parent in our group said it best “I have signed far too many petitions seeking just treatment for young people with disabilities and I’m getting fed up of it. It seems that one young person gets the support/placement they and their family need only for 2 or 3 more petitions to pop up on my news feed”

Justice for LB: Justice for LB is a case that horrifies any parent or human being, it is a case that should never have happened. It is a case that highlights all that is wrong in our health and social service system for young people. Justice for LB has been a hugely influential and informative social media campaign, which has now lead to a campaign for a Private Members bill. If you are the parent of a child or young person with a learning disability, then please support the LB Bill – sadly we live in a world where “that will never happen to me” really does not apply.

And of course, we couldn’t do J without mentioning

Justin Fletcher (Mr Tumble): He’s a bit like Marmite. Whether you personally love him or hate him, we have to acknowledge that many of our children and young people adore him. His character has also helped enormously in making makaton mainstream.

BuT Site Admin

Debs is one of the co-founders and Directors of Bringing Us Together. She is mum to three child with a variety of SEND and has a great husband.