Hi My name is Bron and together with Andrew we are the proud and often exhausted parents of three children. Cooper is 10, Pepper is 6 and Woody is 3. We live in Melbourne, Australia by the beach. We travel near and far whenever we get the chance and we love challenging ourselves, learning about new cultures and trying new foods. Cooper also happens to have Cerebral Palsy. His diagnosis on paper is Dystonic Quadriplegia Cerebral Palsy and Rolandic Epilepsy of childhood.
Miggy: Bron thank you so much for being with us and sharing your family and specifically your son Cooper with us today. I believe you mentioned your son was hurt during childbirth, can you take us back to the events of the day and when you realized your son was going to have special needs? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Bron: Ten years sounds like a long time but in fact it can often feels like yesterday. Cooper received a short sharp insult to the part of his brain that controls movement during birth. I remember when he was three days old sneaking a peak at his hospital notes which read " likely to develop CP" and I guess that's when I knew that this would be long lasting. I remember having to have discussions about turning machines off and percentages of chance of survival. I remember going into hospital every single day for a month to see my child and crying every single night when I had to leave. Today I am reminded every single day how lucky I am that he chose to live and how he's doing such a great job at it! It's a challenge but not because of his disability but the fact that he's ten and thinks he knows everything!
Miggy: Will you please educate us about Dystonic quadriplegia Cerebral Palsy and explain how your son’s needs affect your day-to-day life?
Bron: Dystonic CP is not as common as other types of CP. It affects the way in which Cooper moves and coordinates himself. The tone of his muscles change a lot from floppy to stiff. The messages from his brain to his muscles get all mixed up and therefore it's hard to control the way in which he does things. When he's asleep you can't tell he has CP, it's just as soon said he tries to move! Cooper needs support with most things each day but I try not to think about all the extra things as it's very overwhelming when you see your three year old get up and dressed and I'm still helping Coop with that. Often when I'm feeding Coop I get emotional as ten years seems like a long time to do that. He is working hard on so many things, there just isn't enough time in the day.
Miggy: What are the biggest worries you face for Cooper?
Bron: I don't really worry about Coopers future as such because he is who he is and he's extremely determined, strong willed, stubborn and driven. I wonder how life will look for him and from the start I've had to adjust my expectations and not compare his childhood with mine as such. I am his parent but he is is own person and has strong ideas and values about his own future already. He already talks about living in London with his wife and tries to come up with ways to discipline his children from a wheelchair seated position! If I really worry about anything it's trying to get some weight on him and when he might surprise me with a seizure, or what his preteen mood will be in the morning.
Miggy: One thing I love about your family is your desire for travel and adventure. We just had our first adventures flying with a power chair the past few months. Was there ever a concern about Cooper's limitations and how it would affect your desire for traveling? And for those of us who also have children with extra adaptive equipment, what are your best travel tips?
Bron: When we travel we take Coopers manual wheelchair as most of the places we go are in SE ASIA and not at all powerchair friendly. I think Coopers disability has encouraged more travel as it started as a strong desire to prove to Cooper and the world he can do and try anything. Going to countries where disability is very hidden is often challenging but we have had some amazing interactions with people thanking us for bringing Cooper to their country and not being afraid to step outside and explore. After traveling I do really appreciate the adaptive equipment we have at home! We just make do while we travel, especially while Coop is still rather light.
Miggy: How can people best approach or respond to Cooper? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Bron: Cooper really appreciates if people say hello first before they lunge into asking " what's wrong?" Or " why do you speak like that.?" "Why do you use that wheelchair?"
If they are rude and just come straight out with it, he ignores them and imitates Ben Stiller from Happy Gilmore doing a throat cut! ;) I always say to people that Cooper knows his voice is hard to understand but never pretend you get it as that really annoys him and me! Just be honest, talk to him, assume intelligence! It doesn't take long for people to appreciate his humour, quick wit, and love of history and war.
Miggy: If you could say something to the mom who just starting on this journey of cerebral palsy, what would you say? What would you say to yourself if you could go back in time?
Bron: I would probably give her a huge hug and cry and say it's going to be okay. It's not what you expected or wanted or know anything about but you'll be fine. Your child will be more than fine as he is first your child. There will come a time where the focus shifts from being about you as the parent to being a support to the child becoming an adult.
To myself I'd say, believe. Stop being so guarded, let people in to help you and do not let therapy rule your life! Enjoy some normality even though you don't feel normal at all!
Miggy: What is the biggest lesson you’ve learned since becoming Cooper's mom?
Bron: Parenting is hard work! Having a child with a disability changes not only the child but you as a parent and everyone that comes into contact with him. It allows me to enjoy the smallest of milestones in all of my children. I see Cooper work so hard and try anything it drives the rest of our family. I see my daughter include everyone in her play and teach all her peers about differences. I see my youngest wrestle Cooper to the ground not caring that he might hurt him, he just sees his brother not the CP. I see our extended family come together united all because of Cooper.
Come back to me in a few years when I'm in the midst of teenage years and puberty and I'll have some great stories to tell again!
Bron thank you so much for this powerful spotlight. Isn't it funny this feeling of complete normalcy in some settings of special needs parenting juxtaposed with things totally out of the ordinary in other settings? Like when you said "It's a challenge, not because of his disability, but because he's 10 and thinks he knows everything!" Totally normal kid stuff, juxtaposed with the fact that 10 years later and you're still feeding Cooper all his meals. To me this is the perfect snapshot of special needs parenting--every day I forget my daughter is different, and every day I remember that my daughter is different. I also love your attitude about traveling with Cooper and would love to pick your brain about traveling to places where disability is hidden. I'm so glad you've had good experiences with that because it's something I know I've been nervous about. Also, Cooper imitating a throat cut with people who are rude? Hilarious and genius! Thanks again Bron and so much love to you and your family.
Please friends, if you or someone you know would like to participate in the special needs spotlight please email me! If you have a friend who you think would make a great spotlight candidate DON'T email me to tell me about them. Sorry, but that never results in a spotlight when I have to try and track someone down. Tell them about the blog, the spotlight and then have them email me at thislittlemiggy at gmail dot com.
Have a fun-tastic weekend.