I am not ashamed to admit this, as I’m sure there are parents out there that feel the same way and may feel that it is shameful to say this, but there are times I wished my son didn’t have autism. Phew. There, I said it and I welcome the condemnation I deserve…
I could end this article here, but I think more clarification is needed. I don’t mind his meltdowns, his distance, the odd noises that only he can understand, how alone he looks in the playground or even the fact I say something to him and he walks away without acknowledging I exist. I’ve learned to accept these things, because he is so loving and loveable in other ways.
The times I wish he didn’t have autism is when I drift off into the future and ponder his life. And in those moments I wish he didn’t have autism. But outside of those moments are a billion other moments I’m so glad he is my boy. Every moment is special. He’s terrified of animals and we borrowed a cat recently. He was initially scared of having the cat near him and then yesterday he was playing with her and figured out that one of his soft toys was a cat and tried to get the toy and cat to play together. Those moments are so incredible that everything else seems to fade into insignificance.
And that’s what I wanted this article to celebrate. As parents we can be wound up so tight about the forces beyond our control outside our family; schools, local authorities, lack of government initiatives to help people with special needs transition into work, the list is endless. But in the midst of all this is the child, overshadowed by all the other crap. And I want to make it clear that this article isn’t for every parent. I know parents who are doing amazing work with their children and I celebrate their ingenuity, courage and strength (some should have their own prime time slot to share what they do! Ed) So this article isn’t for everyone. It’s really aimed at those of us who are struggling or wavering, who just need a gentle reminder of what they already know or those that don’t know where to start.
So here are just a few tips that are intended to be non-judgmental (but may not sound that way due to an overspill of passion. Ed)
- Don’t panic! That’s a hard one to follow. We live in a constant state of panic because the world is not as supportive of children with SEND as we would hope. It doesn’t matter if this is simply in our head or an actual fact. Life isn’t easy for anyone, more so for the child growing up in a world that is confusing, noisy, stressful, tolerant but not accepting (more on tolerance later. Ed), unforgiving and where you live under a microscope. I made it sound like you should be panicking! But honestly the next few points will explain better why you should leave panic out of your diet.
- Be accepting of your child for who they are (and not who you wish they were). I initially struggled with this one. I once wept openly watching a group of boys my son’s age playing football and wished with all my heart that my son was like them. Don’t make the mistake I made of being tolerant of my son, but not fully accepting him. You see, to tolerate something is to simply put up with it. It doesn’t mean that you fully accept it. Love is accepting someone for 100% of who they are, not simply tolerating things that irritate you in the hopes of changing them. You’ll never change your child to meet those expectations you had before they were born. Love them with everything you have and then you won’t panic. Instead you’ll be present in every moment of their lives.
- Understand your child and their condition. I did this the other way round. I was studying special needs before I knew that my son has autism. In fact, it was through studying autism that I began to notice the traits in my son. It helped me to understand him and seek the appropriate support for him. Now I study him as much as I can. I know his triggers well and I am focused of meeting his challenges with him. His school chuckled when I said we have a Meltdown Kit for him! But no parent should leave home without one!
- Seek respite. No, you are not abandoning your child. If you don’t recharge your batteries you will begin to lose focus. It is important to see your child with fresh eyes from time to time and you will appreciate them more when you take the odd evening off or do split shifts with your partner.
- Don’t micromanage. This may seem impossible for some parents and I’m going to lambasted for adding it here. Offering your child opportunities to grow and develop can only happen if you allow them to fail once in a while. They will learn self-reliance and resilience, valuable to helping them see that they can cope. Dependency will not help them feel comfortable exploring the world. Just being there with words of encouragement and a hug, will help you realise that failure can actually make them stronger. You are their rock when they are little, but they need to be their own mountain when they grow up.
- Seek help. A label isn’t a stigma. Parents proudly tell me they don’t want their child to be burdened with a label and that they don’t want them to be labelled differently to other children. Er… They are different. All children are! And special educational needs don’t suddenly disappear overnight. A diagnosis means support and early interventions mean the best life outcomes. My son has autism, he’s not autistic. He just experiences the world differently to me and at 4 he will need help with coping with noises and crowded places. His diagnosis gives him access to the best support and who doesn’t want to give their child the best start in life?
When you panic, your child feels it. When you are discouraged, your child is discouraged. If the world is doom and gloom, that is how it will feel for your child. This is why I started with don’t panic. Some parents are so negative about the outcomes for their child that the child often gives up without trying. I interview children with SEND all the time about what they want to do in the future and they rule out work or university because they don’t see them as options. I once did an interview with a father and son where the father said, in front of his son, work isn’t an option for him because ‘he isn’t normal’.
I’m not saying to create a fairy-tale world for you child to live in, just prepare them for the harsh realities of it. Make them resilient so failure doesn’t destroy them. Be realistic, but at the same time foster a sense of determination and fight. I don’t know how long I will be able to fight alongside my son, but I plan to do it for as long as I can. When he is old enough, I won’t fight for him, but I will fight with him. And that’s all I can do to ready him for a rather uncertain future.
And to finish up, most teenagers are facing similar problems now with employment. Employers are less willing to work with teenagers, because they believe they are glued to their phones and can’t tell the time. The young people I work with who have special needs are hardworking and understand how precious these opportunities can be. So in some ways they are more employable. I’m working today to build a consortium of employers that will be able to help these young people in the future. It’s not all doom and gloom. There are still people like me fighting for better outcomes. Have faith in us and develop a more positive way of viewing the future.