Many people have commented over the years with regard to my parenting style of my son with his array of special needs. I’ve had well meaning people tell me that I am ‘too soft’, am ‘over-protective’ and a specialist once questioned whether I was a ‘lazy parent’! I’ve had people tell me ‘he will be fine, look at him – he looks normal!’, not even knowing the destruction his seizures at the time were doing to him, and what would eventually lead him to having his brain surgergy. I would smile and nod, too tired to go into detail the real storm that was going on deep down in his little head.
The thing is, I know these comments were coming from a place of ‘good’, most of the time. The problem is, when people who don’t have a child with special needs make a comment like this, it’s completely misses the mark on supporting the parent! A point I think that even the most well-intentioned would be suprised to hear.
When you are a parent of ANY child, you are sure to receive a two cent worth opinion that you didn’t ask for along the road of this parenting gig. No one likes to be told what they are doing wrong. But we all like to be told what we are doing right. It’s a set of different challenges for each and every family.
The way we support one another makes a huge difference.
When we start to acknowledge this, it takes away the competition of comparing children. Why do we even do this? Is it because of our out-dated educational system of standardised testing that this way of comparison is programmed into us? With the thought of believing we must excel at all the same things? That we must all have similar timelines? How crazy is that?!
Some challenges in families are more common than others.
In the case of special needs families, we have a set of common problems that are not found in other families. Listen, and I mean really listen, to a parent of a child living with a medically complex condition – you will hear that our children don’t hit the milestones and pass the standardised tests that are found and used for typically developing children, so where does that leave us?
No matter what you see on the surface, parenting a special needs child is an intensely different challenge than when a child is developing typically.
When a child has a set of medical issues that interferes with his/her development, there is a team of people behind that child – paediatrician, allied health therapists, medical specialists, social care workers, support workers and so on. It’s a pretty amazing thing to think that we live in a country whereby we have systems in place to support these little beings that teach us much more than what a result on a piece of paper, or a ‘diagnosis’ name could ever tell us.
Behind closed doors, families are reading, researching, filling out forms all in the aid of trying to make a path for their child to be able to access what is necessary for them to live a fulfilling life – the right health care, the right education, the right for a happy and supported social life and beyond the school years? A right to be an active participant in their community whereby employment IS an option.
‘It’s tough for all parents” is a common statement we hear.
The problem with this statement is that yes, of course, parenting is a tough gig! No denying that. The issue is when the families of special needs children are made to feel that they somehow don’t fit in to their community because the right supports aren’t in place, because it hasn’t been set up correctly due to lack of understanding of what these families need.
We want what you have!
Access and inclusion for our children and our families to education, parks, activities, fulfilling friendships, fulfilling employment, the list goes on! With careful planning and consideration, all the above can be achieved but there needs to be the right kind of adjustments and supports in place to achieve this.
Of course, this isn’t to overlook some of the great improvements of inclusion and adjustments which are happening all the time through different organisations pushing forward with these initatives, but there still needs to be a lot more done!
We need people to understand that it’s very much a way of life for us, and it’s not a stage that will disappear as time ticks on. For this to happen, people need to be informed so attitudes can change!
I hope that in 2018, we continue to see the growing acceptance of all people in our communities, with making the necessary changes to support people who don’t live a ‘standard or typical’ life. We need to see more diversity and options in our abilities to support each and every person.