It’s taken me many years to realise there is more than one level of acceptance when it comes to special needs parenting.
Naively, I thought I had reached acceptance early on after the initial wave of grief abbated. After all, acceptance is the final phase in the grieving process. I honestly thought reaching that milestone would be it.
Isn’t that what all the books say, anyway?
But it turns out, that’s just the first level of acceptance. There are many others to reach, as you progress along the road.
Instead of viewing the process of acceptance as a flat, linear one, it turns out it’s more like a mountain climb. It’s a climb where you reach one peak and enjoy the easier pace of the plateau for a while, only to look up and find another climb before you.
Each successive climb takes you further away from your original self and your original view of your child’s diagnosis.
Each successive climb challenges you. However, it also brings you closer to inner peace and true acceptance.
12 years on this climb and I’m so very different to who I used to be. And I suspect my climb isn’t quite over just yet.
However, I’m comfortable in my current plateau right now. From here I can see just how far I’ve come and I can appreciate just how many levels of acceptance I’ve already reached.
The first level of acceptance comes quite early on – it comes before you even get a diagnosis. It’s accepting that something is not quite right with your child. It’s acknowledging that some sort of action might need to be taken and making the hard decision to do something about it.
In some ways, this is the hardest mountain to climb. I remember stewing on the possibility that something more was behind Gilbert’s behaviour for nearly a year before we actually got some answers. I could not bring myself to accept that he may have autism, as well as albinism.
When it was first suggested to me, I brushed it off incredulously. In fact, I was actually offended by the suggestion. How could my beautiful boy have autism? Surely his behaviour was driven by his vision impairment – it couldn’t be anything else?
However, the suggestion silently burrowed into my brain and I began to see signs all around me. Still, it took a long time to accept that something more was behind it all and even longer to do something about it. But I eventually did take action and he eventually received a diagnosis of autism.
That first climb was unbelievably hard. First, I needed to acknowledge there was something to warrant investigation, which took a lot of strength and resolve. Then, I had to summon the courage and the energy to act upon my suspicions.
It’s an emotionally draining, physically exhausting and mentally challenging climb on its own. However, it’s only the first in many levels of acceptance as a special needs parent.
The second level of acceptance sees you beginning to accept the implications of the diagnosis for your family. You’ve already accepted there is something amiss with your child’s development and you’ve taken action to identify it. The next level of acceptance is understanding and acknowledging what this means for your family as a whole.
Special needs parenting is long-term and in most cases, it’s life-long. This has implications for many areas of family life:
- Relationships – your relationship with your partner, with your kids and with your wider circle of family & friends will be impacted by the caring needs and requirements of your child
- Finances – you may need to become a single-income family due to the caring responsibilities that special needs parenting entails which could lead to financial stress and strain
- Lifestyle – depending on the diagnosis, there could be limitations on how you can live as a family unit. These limitations could include where you live, if you can work, schooling options, family outings & transport needs.
- The future – more than likely you will worry about the future and wonder whether your child has a chance at an independent life. It can be stressful making plans for when you are gone and worrying about the greater caring responsibilities your other children may have in the future.
It’s very difficult to accept the impact of a diagnosis on the entire family unit and what that means for now and in the future. The best way I could come to terms with this was to break each of these issues down as I was too overwhelmed when seeing all these issues as a whole.
I tried to look at each aspect in isolation and concentrate on each one separately. This way I was able accept each one in turn. For instance, I was able to accept the impact of the diagnosis on my relationships before turning my attention to the impact on our finances.
By slowly working through each of these impacts on our family life, I was able to accept each one in turn so I could move onto the next climb to acceptance. It’s not a quick or easy process but it is a big step forward along the climb.
The third level of acceptance involves your personal acceptance of your new role as a special needs parent.
In some ways, daily life may not look all that different. However, there may be more appointments to attend, meetings to arrange, therapies to undertake and conversations to have with a whole host of people. Not to mention the constant explaining and educating to those new to your situation.
The biggest challenge in this level is to fully accept the sense of responsibility and obligation that often comes with special needs parenting. It’s an all or nothing role. You don’t get to go home at the end of a gruelling day, put up your feet and relax, like you would in many other positions.
Special needs parenting is a 24 hour a day, 7 days a week, 52 weeks a year role. You may be able to have some time to yourself or even get some respite so you can have a break for a little while. However, even then, you’ll tend to have trouble switching off from your normal responsibilities – I know I do.
I also had trouble accepting that I needed to be my kids’ advocate. As a naturally timid and non-assertive person, I felt intimidated by the thought of questioning or challenging others in authority, such as specialists, therapists and educators. I did not want to be so utterly responsible for their social, health, education and medical needs, especially as I felt so out of depth myself.
However, I’ve learned to take on many roles as a special needs parent. It’s taken a few years to fully accept this part of the journey, but now I’m proud to be able to describe myself as my kids’ advocate, educator, specialist, carer, personal assistant, interpreter and social director.
It takes time and experience to conquer this level of acceptance but it’s well worth the climb, for both your child and for yourself.
The fourth level of acceptance is when you finally accept your child for who they are, not who you thought they would be. It’s a stage where your existing worldview is challenged and you realise you may not always have the answers. It’s where you finally let go of the unconscious expectations you have held for your child and acknowledge they are enough as they are.
I’ve only just reached this level, after 12 long years. The catalyst for this most recent revelation was a conversation with Gilbert about his behaviour in the playground at school. After years of playing on his own, we have all been so happy to see him develop friendships and play with others this year.
Making this observation to him, he replied that he was perfectly happy on his own for all those years. He never felt lonely or neglected as choosing to be alone allowed him to think and do what he wanted to. However this year he was ready to be with others and it was his choice to spend more time with his friends.
I guess we all tend to project our own preferences and perceptions on others. While I had worried about him all these years, thinking he felt alone and rejected, in fact he was quite content. What I wanted for him was not at all what he wanted for himself.
Accepting this reality has been a big turning point for me as a special needs parent. I now realise my expectations are mine alone, not his. I am his parent but he is his own person. Sometimes what I think is best, is not the best for him at all.
While I will always be a special needs parent, it’s a timely reminder for me to step back and give my kids a little room to grow and develop at their own pace as they live their own life, not mine.
Being a special needs parent has it’s challenges but it also holds much opportunity. It’s up to us to accept the challenge, take a deep breath and start the climb towards greater understanding and acceptance.