If I could travel back ten years to when my son was two and I first realised he was on the autistic spectrum here are some of the things I would of liked my younger self to know.
1. Believe in ourself as a parent. If you feel something about your child or their development is different to most children their age trust your gut and don’t be fobbed off.
2. Be aware you have the power to take control. Parents can take action and apply for a referral through your GP or directly apply for an EHCP from a local authority for example.
3. Don’t feel you have to behave like ‘all the other parents’. Think outside the box and know that you are child’s supporter, advocate and protector, that should come before anything else, especially social norms.
4. Look for your tribe. There are lots of people outside of professionals from whom you can get support and advice. Organisations such as The PDA society, The NAtional Autistic Society and IPSEA to name just a few are invaluable perhaps even more so other parents of autistic and SEND children, groups, blogs and pages as well as autistic adults will be able to give you real unbiased support and advice. You don’t have to be alone.
5. Know it is not your fault. It is easy to allow professions to make you feel you are to blame or to feel shame because your child is violent towards you. Enough people will try and pass it back to you without you blaming yourself. Have confidence remember behaviour is communication and that your child needs you to be strong, you can not be in a strong place when you feel like you are doing something wrong.
6.Trust your child. Trust what they tell you, trust the physical clues they give you, and trust them to want to do well. Be good and succeed and once the environment and support is right for them they will. No one does well if they are not trusted and believed in.
7. Professionals get it wrong. When I started my journey I believed what I was told and that professionals cared about my child’s needs almost as much as I do. It is good to remember they only see a snap shot, they likely have a heavy workload and that no one knows everything. You can help meetings and assessments be more fruitful by gathering evidence and taking it with you, keep a diary, jot down conversations and behaviours, gather opinion else where from other professionals, teachers, friends and family. Even if the meeting does not allow time to discuss it, leave them written copies, send it in an email or letter, evidence everything.
8.Don’t be afraid to make a nuisance of yourself. I am a very polite person and I had belief in professionals to make things happen as quickly as they could, I believed in the process being thorough and equal. The truth is that if you don’t push you may be fobbed off or stay on the bottom of a list. Be firm but fair, try not to get overly emotional but keep presenting your case clearly, keep pushing for needs to be met. Ring or email, remind them you are still there, still waiting and that your child is still in need.
9. Know your rights and those of your child. Read the long boring guidelines and rights and quote them in letters, meets and emails. This is by far the most effective way of getting action and the support your child is entitled to.
10. Love and value your child for them as they are now, today. It is easy to get caught up in the everyday struggles but making efforts to get to know what makes your child tick, helping them feel valued and loved and building the very best relationship with them (not who you want them to be or not to be) is the best way to help your child move forward and out of the situation you find yourself in. Eventually it becomes almost effortless because you are relating, planning and building a future together every minute of everyday. Don’t wish away this time now thinking that things will get better and be different when a,b or c happens, your child only gets one childhood so even in difficult circumstances it is important to make the most of every moment you can.