Sunday, 5 January 2014
Dear Parents of the newly diagnosed
Getting a diagnosis of autism for your child can be a scary time for many. For others, it is a relief, a vindication even. There is no right or wrong way to deal with your own feelings, as a parent. You must do what you must do. But, having been an autism parent for 2 and a half years now, I would like to tell you something, which may or may not be of help to you, if you are struggling to come to terms with your child's autism diagnosis.
The first thing I have to tell you is, you won't always feel this way. I promise you that!! It's all new, it's all uncertain, you read a lot of doom and gloom about autism, you fear for your child's future.
But you know what? Before you even realise it, autism will become a way of life for your family. You WILL cope, you will do MORE than cope. You will help your child fulfill their potential. How will you do it?? I don't know, because I don't know you or your child, but I do know you will do it, because that is what you do as a parent, it's what you do because you love your child more than anything else in the world. It's what you do because it's what your heart and your head drive you to do.
I am not here to tell you it's going to be a walk in the park. Far from it. It will be tough, heartbreaking, frustrating and some days you will feel like the fight has gone out of you. But then, all of a sudden, something your child does, or says, or a milestone reached will make your heart fly in a way you never thought possible!! It's not easy, but hell, it is so worth it!!
I want to share what I have learned so far and I really do hope you find it helpful.
An autism diagnosis does not change anything about your child. They are STILL your child, the same beautiful, funny, amazing child they have always been. They had autism the day before the diagnosis, and the day before that and the day before that!! Autism is not the end of the world, it is just a journey into a new world. A whole different world, full of wonder, frustration, joy, sadness, patience and love. It won't be easy but it will be worth it.
When your child learns a new skill, or says mama for the first time, or learns to put on his own jacket or tie her own shoes, or makes their first friend, the joy you will feel cannot be put into words.
This new world is about the moments, not the milestones. Cherish those moments, those victories, because whilst they may seem small to others, for your child, they are huge and they deserve to be celebrated.
When times seem bad, remember that you cannot have a rainbow without first having rain. Rest assured that the good times will outweigh the bad.
Your child will teach you to be the person you always wanted to be, with more love, strength and patience than you could ever have imagined.
So, buckle up and roll with the punches. Autism is a life like no other. Embrace it. Love your child for who they are, not for who you thought they would be. Don't try to change them to please the rest of the world. Your child is exactly how they are meant to be. By all means do what you feel is necessary to benefit your child, but do it for THEM, not so that others can feel comfortable.
You need to learn to accept that autism is a part of your child and you have to enable your child with the knowledge that you accept them as they are, because you have to allow your child to be comfortable with who they are, and to know that they are loved just as they are. They need to know it is fine to love themselves and to embrace who they are. They need to know that those who don't accept them are the ones that are wrong, not them.
Be prepared to develop a thick skin, as your child will be judged, your parenting skills will be judged. But know this. Those who judge are the ones with the problem. They know nothing of your life or of your child's amazing ability to be able to function in a world that is completely alien to them. Those judgemental, intolerant people are the ones who need to change, not you and certainly not your child.
Finally, the single most important piece of advice I want to give you is this :-
No one knows your child better than you do. There may be many professionals involved with your child and you. This is not a bad thing at all, but you must remember that they do not know everything. Your child's autism is unique to your child. Never allow your child or yourself to be pushed into doing something your instincts tell you is not what you should be doing. You are your child's advocate, you are your child's voice. You know your child better than anyone. There is no 'one size fits all' approach. Do only what you think will be good for your child. Use your voice, never be afraid to be heard.
Welcome to the rollercoaster ride that is autism. Together, you and your child will find your own way of navigating the journey. You have got this. You and your child are strong. You and your child are fighters. You and your child are determined.
Your child is autistic.
You are an autism parent.
Welcome to the club! We've got your back.