Many families which include children with Down syndrome make the decision to treat their family primarily as a family first and foremost. There is so much merit in this and we tried very hard to just be us and enjoy growing with our children. After all, kids with Down syndrome are just like other family members in their contributions and relationships.
Buddy played with his sisters, annoyed them deliberately just like any other brother, developed skills in a similar order (albeit somewhat slower in many areas), and brought the same feelings of pride and joy as he learned to walk, speak, tidy his toys etc.
This placed a lot of pressure on our family. Locally, therapy in the form of speech pathology, occupational therapy or physiotherapy was only available once a month. I didn't feel that amount of intervention was going to help my son so we made the decision to travel to access twice weekly therapy. It placed a huge burden on our family and changed all the children's formative years.
I think I aged overnight and my personality changed. I wasn't carefree anymore, didn't laugh often or easily, and was burnt out. But it was NEVER Buddy's syndrome that brought me undone. It was the lack of support.
So why did I do this to myself and my family? Well because I know for a fact that people with Down syndrome can lead very capable and fulfilling lives. I've met adults that have given me so much hope that my boy will be an independent adult. Like all parents, my hopes and dreams are that my boy will be a good man, capable and happy.
I'm not able to measure how much therapy affects outcome, how much is learnt from life, or how much is just genetics but I'm not prepared to take chances. I will do everything I can to extend Buddy in any way I can.
He approached the counter, blowing raspberries and pointing at the item he wanted. Well.. in a rush of emotions, I collapsed. I was shocked that this man wasn't capable of speech. I burst into tears and raced to the toilets. I threw myself into a cubicle and slid down the wall onto the floor, sobbing. Loudly! I couldn't control my tears and was ashamed to find myself crying in such an obvious display of heart wrenching grief.
I think my emotions were compounded by the unexpectedness. I was loving watching those people. Little did I dream that I was going to be confronted by the possibility that my child might never be able to look after himself! It hurt me beyond belief.
I felt guilt too, for my reaction. I strongly believe that each person has worth and contributes to the community. I don't want to live in an artificial world where we only have capable, able bodied people. I would love Buddy just the same if he wasn't able to speak but it's not the outcome I would choose. While his worth as a person would be no less in my eyes, he would face many more challenges through life.
I will never know if Buddy is the capable boy he is, because of my efforts or if he would have achieved the same outcome without my help. Possibly we could have just stayed home and played more, visited friends and family more.
Luckily, the Australian system is undergoing a huge overhaul. When the National Disability Insurance Scheme is fully implemented, families will be able to access as much therapy as they see fit without the exhausting battle behind the scenes.
Finally Australia is moving forward but I will always wonder if I chose the right path. On a personal level, we have reached a stage that I am able to relax. Buddy is a capable and thoughtful young boy. He makes me proud every day in some way or another. I'm even proud of his misbehavior if it's developmentally appropriate!
|Yep, the eldest is definitely shorter!|