Since starting the blog, my aim has always been to educate people not only on the fact that we are family like any other, but also on disability and everything that comes along with it.
However, what I have found over the last 2 years is that there is also plenty that I can learn from our followers i.e. their perceptions of people with disabilities.
Recently, I decided that I would try and answer some of those questions that people have for me when it comes to being a parent of a child with special needs, and I encouraged our followers to ask me questions no matter how uncomfortable for me, as its important that I help educate others and give them an insight into what life is really like.
So, without further ado, I’m going to get right into the questions.
(Please note that the answers are coming from my experience, my thoughts and they are completely my own opinions).
Do you worry about what will happen to Noah when you are not able to look after him as you get older?
I think being honest as a special needs parent this is something Denis and I tend to put to the back of our minds. In Noah’s case as his syndrome doesn’t affect him intellectually, we are hopeful that he will be able to lead an independent life without Denis and I as an adult.
However, we are aware that he will always need some sort of help and unfortunately in our country the personal assistant services available aren’t always the best, not to mention public transport, rental accommodation etc so all of this is a concern for us.
I know that the future is bright for Noah, but I also know that he faces a lot of challenges, and it would be naïve for me to say we don’t think about that.
The most important thing I feel we can do for Noah is to make him as independent as possible and hope our countries services will be able to provide him with the assistance he needs when the time comes.
Is it difficult to not punish them if they are bold to the same degree as you would a non-special needs child?
The simple answer to this is yes.
Now as I mentioned above we are incredibly lucky that Noah is intellectually fine, and he doesn’t have any behavioural issues so there is no reason why we can’t discipline him as we would have with Sophie (our daughter who’s 12).
However, although I would see myself as quite a strict parent I would say that at times depending on the situation I can give Noah allowances because of his disability.
To be honest I think this is fair, but also, I am aware by instilling proper behaviour etc will all help Noah to live independently in the future with the necessary social skills.
When I am out and about, and I see someone with a disability, I find it difficult to know where to look, I don’t want to stare but I am also aware that I am going out of my way not to look, is this normal?
Yes, this is completely normal. Disability has always been part of my family (I have different family members with different disabilities), so I think in a way I’ve never been awkward or uncomfortable when I meet or see a person with a disability.
However, if seeing a person with a disability isn’t something you are used to, its perfectly normal to feel awkward or unsure of what to do. Especially if you are afraid of offending them. To put it simply, the easiest way to get over this awkwardness is to look at them the same way you look at any other strangers when you are out and about. Slowly but surely you will be less awkward, and you will see people with disabilities in a new light.
I am a newly qualified disability nurse and I am wondering if you were in a hospital situation with your child, would you be more comfortable having him in the care of a specialised nurse over a general children’s nurse?
To be completely honest, we haven’t ever been fortunate enough to meet a children’s nurse who has specialised in disability. I think when you are admitted into hospital with your child, especially when it is in an emergency you just want them to receive the best possible care.
However, if the services were available for Noah to be cared for with a nurse who is more familiar with disability, this would certainly be a better option for him and for us as his parents.
Do parents with special needs children prefer people to ignore that their child is dealing with any issues or would they prefer acknowledgement of what they are going through and endorsement that they are doing a great job?
From my perspective and this is my perspective I would prefer if Noah’s disability was ignored, and he was interacted with because of who he is rather then the syndrome he is suffering with. You see Noah garners a lot of attention simply because he is in a wheelchair, not because he is another 7-year-old boy.
I find sometimes people bridge the personal space gap without really considering what they are doing and how it might make not only Noah but also his family uncomfortable.
You see people with disabilities really want to be treated like everyone else and if you wouldn’t normally approach a child without a disability then it’s not appropriate to approach a child with one.
However, if you are a naturally chatty person, like me then I would encourage you to ignore the disability and concentrate on the person themselves.
When you go past people with Noah in his wheelchair what reaction would you prefer?
This is a simple answer, and one that I hope doesn’t come across as cheeky. I just want the same reaction as you would give anyone else.
If Noah was to smile at you, smile back.
If Noah was to ignore you, as he wheels past well then there is no need for you to acknowledge him either.
For clarity, there is no need to pat him on the head, tell him he’s a great fella, try and ask me what’s wrong with him etc etc, and yes unfortunately all these things happen most weeks.
Do you feel people stop and stare and make judgements on your family?
This is one of those questions that is completely open to perspective. At the beginning before I had accepted Noah’s syndrome and the future that awaits him, I would have looked at everything in a very negative manner.
Now that I have a bit of hindsight, I really think a lot of people who look or stare at us or Noah it is down to simple curiosity.
I mean at the end of the day a child propelling or using a wheelchair of his own accord is something to look at, and to be curious about.
However, there are cases were people can overstep boundaries i.e. point or ask personal questions and while their intention may be good it isn’t something I think any parent of a child with special needs likes.
So, while I don’t think anyone is being judgemental there are times people need to be more aware of their actions when a person with a disability is out and about.
Do you wish the worry would ever stop?
You know this is a really difficult question and I think if I was to start answering it in a detailed manner it would end up being a book.
Or another blog even (there’s an idea).
The worry has possibly been the hardest thing to deal with when it has come to having Noah. I was diagnosed with depression and anxiety which I currently take anti-depressant/anxiety medication for over a year after Noah was born.
And unfortunately, at times I literally wished I could just end it all to take away the never-ending pain worrying if something was going to happen to Noah or not.
Will the worry every stop?
I don’t think so. I think that’s a natural part of being a parent and sometimes and I mean sometimes worry can be a good thing.
It has made me hyper vigilant when Noah is unwell, and it has certainly served me well when it came to getting him to hospital or to the doctors at the early stages of an illness.
I’m able to control my worry now to a level that is within reason, and a level that doesn’t overtake my whole existence.
And I can only hope it stays that way.
I really enjoyed answering these questions and I hope that the answers give you a better insight into life as a parent of a child with special needs.
I have kept the answers short and simple, but I aim to go into detail with some of the questions on our Facebook page through short live videos.
So please feel free to send me any other questions you would like to have answered, Im always at the end of the phone.
All our love
Our Wheely Big Journey