As I’ve been preparing for my autism presentations (today is the day!), I’ve revisited the early days of my son’s diagnoses.
This process has helped me to identify what I wished I had have known in those early days so I can share this with others today.
It’s been a timely exercise for me in a number of other ways too.
It has illustrated just how far we have come over the years, at a time when we are feeling the pressure of the impending challenge of high school.
It has reassured me that we do actually know what we are doing. Which is just the boost I need as we hit the uncertainties of the teenage years.
And it has highlighted just how far how my mindset and belief system have shifted over the years, since receiving our first diagnosis for Gilbert in June 2004.
In the beginning, I could only see the negatives. I could only see the deficits which highlighted in sharp relief all the things we needed to change in our boy.
All those things that made up his diagnosis.
Through the inital haze of grief and shock I was not open to the possibility that my son was enough as he was.
I could not see that his conditions didn’t take anything away from him.
In fact, it took me some time to realise that his diagnoses have actually given him a focus, an intelligence and a determination that he may not have otherwise possessed.
His diagnoses are an integral part of him. He would not be Gilbert without them.
Thinking back over the last 12 years, I’ve come to believe many things and I thought it would be fitting to share today the 10 things I believe as an autism parent.
I believe special needs parents are no more special or any stronger than other parents. We are all human beings, doing the best we can and loving our kids with every ounce of our beings. Raising a child with additional needs doesn’t change that.
I believe we need to build a community around us (even if we don’t think we do). We all need to feel a sense of belonging as well as feeling connected and valued. We shouldn’t feel isolated and alone – like everyone, we need access to help, support and understanding.
I believe we need to cling to our own identities of self. Yes, we are parents. Yes, we may be parents to a child with special needs. But we are still our own person. We are entitled to our own lives and interests and escape. And we shouldn’t feel guilty about wanting that escape or for taking time out.
While we’re talking guilt, I believe we need to shed the guilt. All of it. Special needs parents are masters of guilt. We feel guilty about the diagnosis, about not doing enough for our kids, for not being able to make the right decision, for not being able to spend enough time with our partners or with our other children. STOP THE GUILT.
I believe we are equals to medical specialists, therapists, teachers and education professionals when it comes to planning for our children’s futures. We know our children best. Specialists are experts in their field and their advice must be considered. But as parents, we know how the diagnosis uniquely affects our child and have a vital role to play in planning for their needs.
I believe being a special needs parent, regardless of the diagnosis, is a tough gig. Stress is our shadow. We’re either stressed because of what we ARE dealing with or stressed because of what we COULD be dealing with. We’re always steeling ourselves for what comes next, preparing ourselves to manage and mitigate the next meltdown, upset or issue. It can be an exhausting way to live and we need to acknowledge this.
I believe we need to be honest with ourselves and not deny nor be ashamed of these thoughts and feelings. They are natural and we all experience them from time to time. But we do need to acknowledge them – don’t just ignore them. We need to be able to move on before they begin to fester and make life even harder for us.
I believe we need to listen to our children and advocate FOR them. We should not assume we know best or that we have all the answers. We should always try our best to seek their views on issues that are important to their daily lives.
I believe acknowledging the unique challenges of being a special needs parent doesn’t make us terrible parents or means we are betraying our children. Facing this reality head on makes us better parents and provides the self-awareness to seek help when we feel we need it.
I believe we should never be afraid to ask for help. Most people are happy to help if they can – in fact, it makes people feel good to know they are needed. We should not second guess what the response will be or think that we are failing if we can’t do everything on our own – we should seek help if we truly need it.
What 10 things do you believe?
Your point number 8 really resonates with me: “I believe we need to listen to our children and advocate FOR them”. I think that applies across the board. Thanks for the reminder!
Yes, couldn’t agree more.
I’ve come to see this as such an important part of my role as a parent. I really can’t make assumptions about what my kids need – to represent them I need to listen to them and know what they want too.
Well-said Kirsty! I hope today goes extremely well. You are in my thoughts as you enter the next, and most importantly professional, stage in this journey of yours to help others. Denyse xx
Thanks D – I really, really value and appreciate your input and support x
Your blog really helped me be OK with Mr 7 receiving a diagnosis of ADHD. It was almost a relief to receive that diagnosis and to see the results of his treatment because it meant that I wasn’t imagining things lol!
Thanks so much for letting me know that Tegan – I really am so happy that I’ve been able to help in some small way. I hope his sleep is improving for you – I know that has been a struggle for you for quite some time x
I found myself nodding at all of these, as a parent of a child withOUT special needs. Which made me conclude I must disagree with #1, because I think parenting at the best of times is a strenuous task. I love that you’re spreading the word, educating others and supporting parents in the same boat all at the same tim xox
Thanks for that. I’d love to think that I’m special in some way but all those memes that say you are only given what you can handle/God has special plans for you/special kids only go to special parents, they all really grate on me. No one is better than another when it comes to parenting, special needs or otherwise – we are all just muddling along doing the best we can!
Kirsty you are an amazing advocate for your kids! I know you say that Special Needs parents are no more special than other parents I am pretty sure you are selling yourself short! I think you are all amazing and need to advocate for your kids in a different way to those of us with “neuro-typical” kids.
I am still trying to write my 10. I hope to get it up there tonight. xo
Thanks so much for your beautiful comment Cat. Looking forward to reading your 10 now that I’m back on track with reading and commenting again!
I love Number 5. Parents are the experts when it comes to our children and medical specialists need to recognise that, instead of acting like God.
Ye, I’m a big believer in that one (from experience!)
So much of this is true, as the sister of a special needs child, I see this. The last point is probably the best one. But then these points go for all parents I believe. Everyone has challenges, they are just different and sometimes there are just bigger mountains to climb.
You are right, these could apply to all parents but I do think they have a particular relevance to special needs parents. I would love to talk to you sometime about your experiences as a sibling in a special needs family (if you are okay with that…)
I love this post Kirsty. Your 10 points are honest, and I think that they are relevant to all parents.
Thanks Michelle – reading over them again I think they are definitely relevant to all parents as well – it’s nice to know that I really am not alone in this!
I know that often non parents aren’t “allowed” to weigh in here….but I’m going to haha. I guess I don’t see why you need to lose who you are when you have kids. And I’m not talking about not growing and maybe realising other parts of your life don’t suit you any more, and that you genuinely don’t like them, or that coming home with a newborn will consume you. Of course those things will have impact on your life!
I’m talking about giving up a hobby you still enjoy/get value from because it “has” to be all about the kids. Aren’t you setting a good example for your kids by pursuing your interests? Doesn’t that teach them independence? Doesn’t it make you a better person and therefore also a better parent if you are engaged in other activities you love?
Love this post Kirsty. I would also add that I believe it is even more important to practice self care with all that extra stress that you inevitably carry. xx
Love this post and can see so many common themes with my own feelings after initial diagnosis.
Yes yes yes! Especially point 5. Parents are experts, I tell everyone that 🙂 #SpectrumSunday
I was nodding with each of your points, especially the one about clinging to our own identity. Keeping a sense of who I am has been so important to me in the past year, as we barked to find support for my Son.
These are all very good. Well thought and I’m sure many others will agree. Thanks for linking to #spectrumsunday
I have more to add to the list, upon reflection – may have to write a sequel to this in the future!
I relate to this so much and I have only been an autism parent for one year – especially the first one. Everyone just does what they need to for their children, don’t they? Thanks so much for linking up with #SpectrumSunday. We hope you come back for the next linky.
We are all doing the best that we can – that’s all we can do in the end and it’s all we should be expected to do. It can seem like too much sometimes but I just look at my kids and I know that I would do anything for them x