I’ve thought long and hard how I’d tackle this subject because the last thing I want to do is expose my daughter and make her more vulnerable than she is. This is about MY experience of being her mum. There are some things I’ll never be able to share, because It’s her story and not mine.
My daughter’s official diagnosis is ‘Dyspraxia, with some autistic tendencies’, but us SEN mum’s know it’s so much more than that.
• The fist things are the niggly doubts, noticing that your child is a bit different, they don’t cry the same as others, they don’t sit up, they don’t babble. The health visitor tells you not to worry, don’t compare them to others, all babies are different. Eventually there comes a referral to a specialist and the endless appointments begin.
• Then comes the shock, the disbelief of somebody actually saying out loud what you’ve been fearing. Your child is not the norm, they’re different, they’ll not reach the same milestones at the same time as others, they’ll not go to mainstream school. This sent my head into a spin, I stood outside the health centre holding my baby in her car seat and rang my husband in tears I just couldn’t even think what to do next or even how I was going to get home.
• Welcome to your new world, one you didn’t know existed. You have to mourn the child you thought you had, accept what you’ve been told and get ready for the future. You have to get ready to fight for your child, because from now on everything will be a battle. You’ll find other SEN mums along they way, use them, they’re going through it too. They are a wealth of knowledge, support and strength.
• Acceptance is a hard stage. It’s one I’ve seen many mums stall at. They hope that everything is going to be ok, and that their child doesn’t need any special treatment or extra support. They don’t believe what the experts tell them, and seek answers elsewhere. We do all get there in the end.
• You will be a champion and find a super power you never realised you had you’ll become an expert in things you never even knew existed.
• Education; You have to find the right setting to educate and nurture your child, one where they understand what your child needs in order to thrive. My daughter attended a specialist nursery school, an idea which I was dead against until I’d visited it. I suppose that this was part of my acceptance stage. The first mainstream school she attended didn’t work out and we had to move her to a school who understood that just because she had a statement of special needs it didn’t mean she wasn’t academically bright. She had her fair share of teaching assistants supporting her, most of them were gems, and two of them are now a dear friends. There are SEN statements (special educational needs) and ECHP (Educational, Care and Health Plan) to negotiate. These need reviewing every year and there is the constant fear that the local authority will take away the support that you’ve worked so hard to put in place. You also become the mum from hell, the pain in the arse always on the phone on their case. It’s important to build a good relationship with the school where you trust each other and where you’re both on the same side.
• Professionals; The Bain of my life. You will sit in meeting after meeting and be addressed as ‘Mum’ which is both insulting and infuriating, (After sixteen years I’ve still to find a solution to this). Nobody knows your child better than you, but the experts will probably think that they do. Do your homework, know your stuff, be polite but firm. Stand your ground, be the pest, the pain in the arse. Nag until you are blue in the face and let them, know you’ll not give up. If you treat them firmly but kindly eventually they’ll realise you are a force to be reckoned with and you’ll earn their respect.
• Eventually you may learn to smile and nod (took me a while and sometimes I still struggle with this) everyone is a bloody expert, they’ve read this article or seen a program. A teaching assistant was once asked me if I’d considered a dummy to help her learn to speak, she was eight years old at the time! I’ve lost count of the number of times people have said ‘All kids do that,’ trust me they don’t, well they might do, but not twenty four hours a day seven days a week.
• Fitting in is hard. You can’t make people be their friend and even though you think that your child is the most amazing, original, inspiring child in the whole universe you can bet that other kids won’t. Some kids have amazed me with how kind and understanding they have been, others have broken my heart.
• Routine, calm and peace and quiet will become your friend. There are places, and people, that are just too over stimulating and it’s ok to say no thank you.
• It’s not all doom and gloom, this new crazy world is fun. I’ve learnt to look at the world through different eyes, I find myself having heart to hearts with toy pigs, taking pictures of pleasing symmetrical things, never being able to walk past a pine cone or a conker without picking it up, and always, always taking the fun route and splashing through the ford.
• Being my daughter’s mum has given me a strength I never thought I had, it’s made me a fierce campaigner, it’s given me a confidence to always stand up for what I believe in and it’s made me see things another way.
• I try not to worry about the future and take one day at a time. So far things have worked out pretty well, and we always find our way. My girl is a superstar who never fails to amaze and inspire me. She can do or be anything she wants to be, who am I to hold her back?