The Bumpy Road Way: Sam's Biggest Fan? His Sister

Sam and Zoe argue and squabble just like any normal brother and sister, but Zoe is also one of his biggest champions. I read a lot of articles, blogs and books that talk about how parents of special needs kids are their biggest advocates. I agree, but that same urge to support and protect also lives within the sibling of a special needs child.

I'll digress for a moment.

Balancing parental attention when you have more than one child is always a challenge, but when one or more of those children need extra attention, how do you make sure the 'normal' child does not feel left out? With Zoe, we have always been very open about Sam's situation. She is two and a half years older than Sam and was six when we received Sam's diagnosis of 22Q 11.2 distal deletion syndrome. Sam's condition is usually not hereditary, but it is protocol following a diagnosis for the immediate family to be tested. This was the first time Sam's condition really impacted on Zoe. We all needed to have blood taken and she had never had this done before. She was scared, but put on a brave face and once it was all over, it gave her bragging rights with family and friends for a while. Our tests all came back clear. Sam was the only one with 22Q. It was just one of those unexplained things that happen.

As the delays in Sam's development became more obvious, particularly his speech and sometimes quirky behaviour, it was important that Zoe understood why he was this way and how to handle it. We talked about 22Q, the missing pieces of DNA, what was different about Sam and why. We also talked about how she could help Sam - playing with him, showing him how to do things, teaching him how to say his words. Zoe took on her role as teacher and mentor with a maturity that surprised me.

When Sam has his hospital appointments, it is part of our routine to visit the hospital café before, or after (depending on the time of the appointment) for lunch and a treat. When it was still early days, I could see that this bothered Zoe. She was a little jealous of the time and attention she could see Sam was getting. So, I had a chat with her and explained to her that all these appointments were not 'fun' for Sam and that he would really rather not go to them. Reluctantly she agreed with me, but I could see it was hard for her. Making special time for Zoe was important, so I started to book 'mummy and daughter' outings. Now she is getting older - 8 years old - she loves doing lunch at Coffee Club, or McCafe. We chat about girlie stuff and complain about the 'boys' - Sam and Steve.

Zoe has been a huge help with Sam and I have learnt a great deal from watching how she interacts with him. Kids just have such a simple way of looking at things don't they? It's us silly adults that love to complicate everything.

When I made the decision to home school Sam, I sat down with Zoe and explained my reasons to her. I believe that things that affect the family need to involve the family. I told her that I was very proud of how well she was doing at school and of course she has lots of lovely friends. Fortunately, she loves school and has a great teacher, but I needed her to understand my choice because Sam would be staying at home with me. Her response was typical Zoe, "That's fine. I love school, but I can I help? I can be your Teacher Aide." So after school, Zoe is going to help me prepare for Sam's lessons.

As I write this post the kids are watching television and arguing over which program to should be on. Sam wants 'Tom and Jerry' and Zoe wants to watch music videos so that she can dance. Believe me, even with speech and language delays, Sam is very vocal and articulate when he wants to be! But in a strange way, their fighting makes me happy. It's a natural social interaction. It's what kids do.