Abrama and Erik recently interviewed Jacqui Devine, whose son George was born with cerebral palsy.
Erik: Jacqui, welcome to our studio. It is lovely to have you here. Please tell us about your son.
Jacqui: Thanks, Erik. George has lots of special needs. He was born with very low muscle tone, was not able to swallow, had a lot of difficulty feeding and never really learned to sit. He just was not progressing really and so he needed a lot of therapy in physio, speech and occupational therapy (OT) areas. We saw a therapist who worked with Kids Plus. They provide a therapy program to children with physical disabilities and motor sensory problems with no cost to the families. These programs are usually very expensive.
E: How many kids do you have in your family, Jacqui?
J: Todd and I have four kids. George is the baby. Lachlan is 14, Sara, our daughter is 13 and William is 10 and, of course, Georgie is eight.
E: Tell me about your involvement with Kids Plus.
J: Kids Plus has made an amazing difference. They work on goal-based therapy, so at the beginning of the term they'll ask what you want to achieve. When George was very little, I wanted for him to be able to sit and so that would be their goal for that term. They would not look at the big picture, but just concentrate on teaching him to sit during that term. At Kids Plus they would persevere and the constant therapy on a weekly basis keeps you more accountable too. If you know you will see them next week, you do the homework.
E: For how long have you been involved with Kids Plus?
J: About six years. They have been very dedicated and a lot of his therapists would be the same people so you keep continuity and I guess by doing that they have become friends. So they have been a really good sounding board and support for me. Not just for the goal that we are working on, but for access to equipment and a really good knowledge base.
E: And, I suppose, emotional support too? You must have experienced tremendous growth as individuals having been confronted with something that you were not equipped to handle.
J: Yes, certainly not what we have signed up for when we decided to have a fourth baby. At the time we found out that George had issues, it was a huge shock. In fact, I was in denial for a long time. He was not progressing as a baby, did not put on weight, but he was sleeping and seemed to be feeding. I went to a health nurse, and I think he was probably not meeting some of the milestones they were looking for which led to me being sent to a pediatrician. I thought there was nothing wrong, but went along with their suggestions. The pediatrician looked him over and said everything seemed fine. But then she rang me the next day and said there was just something about George that was worrying and she wanted us to go to the hospital. There they did a barrage of tests and everything came up fine. I sat there thinking that I knew he was fine. But then one day, maybe two months down the track we learned that our child will be disabled and he will have hurdles that he will have to overcome for the rest of his life. This is not something that is going to go away. And yet up till that point I felt he was okay.
E: That must have been a huge shock.
J: Especially when I was so confident that would not be the outcome. We did have a really bad day that day, but you know, feeling sorry for yourself and crying is not going to change things. So you have to make the best of it. And now eight years down the track, we find that there are a lot of things that we are thankful for, and people we have become involved with. You can see how it has made our kids better people and ourselves too.
E: Isn't it interesting how hardship can shape us into better people? It seems the purpose of hardship is to make us grow up.
J: It has certainly done that. My eldest son had to grow up long before his time. He had to step up and he has always been mature beyond his years and then Sara, she can read me like a book and George relates to Sara very well. So Sara knows when I am about to snap or am frustrated and she will take George outside. I never ask, but she knows and that is something for a teenager! And Will is probably the one I have that shocking mother guilt over, because he is only 18 months older than George. He spent his pre-school years in hospital and doctors' waiting rooms and he learned to keep himself busy – no tantrums or anything. Even now he is the best of my kids to keep himself entertained. He missed out a lot on all those pre school activities – the painting and playing with clay and crayons.
E: You have learnt love is unconditional.
J: Oh yes, sometimes I get cross with George and five minutes later he would hug me and hang on like a monkey, whereas the other kids would not speak to me for days.
E: There must be days when you feel things are too tough. How do you keep going?
J: George keeps you going. You have to because he is your responsibility. To make it better, you have to make it better. I think it is really important to have time out for ourselves. I found that very hard when they were younger. But Kids Plus is good and my mom has been a tremendous support. And we have great friends too.
It completely changes your outlook in life. George's favourite thing is to be in the pusher and go for a walk. He likes to feed the ducks.
He is very easy to please. He has a very infectious personality and is affectionate and funny.
E: What is your message to mums?
J: This is the hardest thing I have ever had to do, but is it worth it? You have days when you think I can do this and I am on top of it. Then you have days when you think this is terrible, how will I get through a lifetime of this? But you have to not dwell on the negatives. Your problems are big, probably bigger than most, but your rewards are big too.
I think if you add up the negatives and the positives, the positives will far outweigh the bad times.
Do you know the story about going to Holland? This story had a great impact on me. There is this person who is going on a trip to Italy. They have planned for this all of their life and saved and dreamed about seeing Michelangelo and Venice and the gondolas. They get on the plane all pumped up and when they land the stewardess says: “Welcome to Holland.” They say no, we are going to Italy. The stewardess says they are in Holland and this is where they have to stay. So the disappointment is huge, but then you start to look around.
Well, it is not as flashy as Italy and it is not as racy and it is really not what we've signed up for, but Holland has Rembrandts and tulips and windmills. Now you have to study a new guidebook and learn the language. But it is still a trip that was good. But if you spend your life mourning the lost trip to Italy, you will not be able to see the special things in Holland.
You sign up to have a normal baby and then you get a special needs child and you do mourn that loss and that is ongoing. But once you accepted that this is where you are at, you can start to recognise and enjoy the positives.
Abrama and Erik's show is broadcast on 94.7 The Pulse every Wednesday at 6pm.