When you are a parent, worrying pretty much comes with the territory. We all do it; it’s just part of the job. When you are the parent of a child with special needs, this worrying intensifies a thousand times over, because everything you’ve taken for granted for your typical child no longer applies. It becomes unsure. I’ve always taken for granted that Skyler will get a good education, make friends, get a job, travel, get married and have a family. Of course nothing is set in stone and it’s not guaranteed, but I think this is what we all envision for our children. But I can’t assume this for River who has Down syndrome, because none of this is certain. Is it possible? Yes, absolutely, and I will always encourage and support him to do whatever he wants in life. Unless that involves him wanting to ride a motorbike. Not going to happen! Anything else though, he will have my full support and belief in him to achieve it, but I don’t kid myself that it’s going to be an easy road.
What I don’t do is let these worries about his future overwhelm me and I certainly don’t let them affect or lives. They’re there in the back of my mind yes, but for the majority of the time that’s where they stay. I’ve always been a positive person and I’d also like to think I am a strong person. We can let our fears consume us or we can move them aside and get on with living a good life. And we do have a good life, great in fact.
The hardest thing for me about having a child with Down syndrome is not these worries; the worries are the easy part for me personally. I guess I’m just kind of good at getting on with things. The hardest part for me is the assumptions. Assumptions from people I have never even met. Assumptions about my son, his brother, me, my husband and us as a family. Assumptions about everything. Assumptions, assumptions, assumptions!
My life as a special needs mum is hard
No it’s not. It’s genuinely; hand on heart just not hard. It has difficult moments yes, although touch wood not many of those yet, and I’m sure more difficult moments to come. But do I class my life as hard? Not even slightly. In fact we have a great life. We have a nice home, our business is doing well, we travel, we smile, we laugh, we love and we go to bed happy. Not everyone can say that. There are millions of people in the world who are worse off than us and your pity is misplaced if you are aiming it in our direction. We are very, very lucky.
I am of course talking about our own personal situation. I hate it when people assume I have a tough life, so I would never assume that another family has it easy. We all have different circumstances and our children all have different needs. We just shouldn’t assume one way or another what a person’s life is like.
Life for the sibling is hard
Again, it’s not. And it definitely isn’t right now that’s for sure. Skyler is one of the happiest kids I know and is rarely sad. He is such a fun guy, is gentle and kind and enjoys life hugely. He also adores his brother, they have a beautiful bond. He also has the patience of a saint with his mischievous and feisty little brother. He is his biggest supporter and celebrates every achievement with an awesome enthusiasm. He doesn’t miss out on any attention, love or time. Both of my boys are showered in all three of these things and always will be.
I worry about the future yes. I worry that Skyler will face more responsibilities for his brother, especially when me and my husband are no longer around. Out of all my fears this is my biggest. It’s something I think about often, although I definitely think Skyler is up to the job! All we can do is work our butts off to ensure that they are both financially secure and hope that their beautiful bond continues. I refuse to ever call River a burden to anyone, ever! He is a blessing to us and Skyler is included in that. Anybody can be struck down with illness or be involved in a life changing accident, causing them to become dependent on others for the rest of their lives. When parents are no longer around this falls to the siblings. Isn’t that what we do though? Care for those we love and help them in whatever way we can? If it’s not, then it should be. I honestly do hope that Skyler will always help us in regards to his brother’s care, along with any future children we may have. I don’t expect it and I certainly wouldn’t pressure him into it, but I do hope that it’s just a natural decision that he makes for himself.
And overriding all of this worry about Skyler’s responsibility are the many amazing positives that come from having a sibling with Down syndrome. Did you know that 96% of siblings feel affection towards their sibling with Down syndrome, 94% feel proud, 88% feel that their brother or sister has made them a better person and more than 90% plan to be involved in the care of their sibling in adulthood. Less than 10% feel embarrassed and less than 5% would trade them for a sibling without Down syndrome. Doesn’t sound too traumatic of a situation does it? In fact it sounds like these relationships burst with love and pride, and are positive and enriching for all sides. Skyler is learning patience, understanding, acceptance, inclusion, kindness, compassion and most of all, how to be an awesome human being. These are qualities we all could do with some lessons in! Skyler is River’s brother, his friend and his protector and my heart aches with pride for him.
River has a hard life
Yet again, he does not. River’s life is far from hard, there is no doubt about that. He is a happy little boy with a wicked sense of humour and is very, very determined. A character trait that will serve him well in his struggle for acceptance in this world! Of course he will face hardships; life can be tough when you are different. It’s my job to prepare him for whatever comes his way and teach him how to overcome obstacles, and most of all teach him how to overcome the attitudes of others. I intend to succeed in teaching him how to prove others wrong with his head held high, a smile on his face and twinkle in his eye. I’ve been doing that myself for years; of course I’m going to teach my sons to be exactly the same! Nobody tells us Balozi’s what we can and can’t do, believe me.
There are so many other assumptions that we have to deal with……………..
- River isn’t healthy – not true
- River will never be independent – not true
- River is always happy – not true (biggest myth about people with ds!)
- River won’t graduate – not true
- River won’t drive – not true
- River will never have a job – not true
- River won’t travel – not true
- River won’t live a long life – not true
- River can’t learn – not true
- River suffers – not true
- River is a burden – definitely not true
- Our life would be better if he didn’t have Down syndrome – definitely not true
What I tell myself to remember is that peoples misconceptions about my son and our life, can only hurt us if we give them power. I’m not saying that people’s opinions have a huge negative impact on us, as actually they really don’t. But it is really frustrating that people, who have no experience with Down syndrome at all, can decide what our life is like. People who I have probably never even met! People who have a friend, whose uncles, cousins, neighbor, had Down syndrome and their life sucks, so that must be true in all cases. It really does drive me nuts that somebody could look at me with my son and assume we live a terrible life!
Nobody has the right to decide that I have a hard life without even knowing me. Even more so, nobody has a right to decide that River is a burden, or doesn’t have a good quality of life without even knowing him. When River was born he was everything I never knew we needed. In such a short space of time he has helped me see the world through new eyes and has become my biggest teacher. Actually both of my sons have taught me more since their births then I ever knew before them. I will be forever grateful to them for that gift. River is a blessing to our family, and whatever we face in our future we will face together. There is nothing that could ever change the fact that I wouldn’t change him for the world.