As many parents know, milestones can be funny things. Ultimately, we know we shouldn't compare our kids to other kids. We know it doesn't matter and that all kids develop differently...but we still do it from time to time. When you have a child with exceptionalities, this experience is much more layered.
I remember taking Eli to a play group when he was around 17 months old. He was starting to get comfortable with pushing himself up to a sitting position and, in the bubbles of our own home and the Rehab Centre he goes to for his Physiotherapy, I was beaming with pride. We had worked on it continuously for months and he was finally starting to make it happen on his own. At the play group, there were a number of kids of all different ages and I can remember a little girl, about 6 months younger than Eli, crawling up to him babbling and pulling herself up to stand alongside the couch next to him. My initial reaction was to smile at how they interacted and then I remember being blindsided by a rush of negative emotion that seemed to come out of no where. Tears burned my eyes as thoughts of "delay..." and "never going to..." flooded my mind. I had to look up at the ceiling to keep them from pouring out. I didn't want anyone to see my moment of weakness, to make anyone else uncomfortable or to overshadow who I had chosen to be for my son. The moment passed and I got back to smiling as the two sweet kids interacted but it then left space for the guilt to come in, as it always did when I had any type of negative emotional experience.
Comparing your child to a "typically" developing child can be hard enough, especially when you are not sure if your own child will walk or talk or do any other number of things that are outlined in the information you receive about their diagnosis. Another layer is added to this when the comparison also pops up within the community of individuals with the same or similar diagnosis as your child. The thing about Cri du Chat (CdC) Syndrome (and many other similar syndromes) is that the characteristics of this condition are greatly influenced by the size and location of the deletion on the small arm of the 5th chromosome, and, of course, each deletion is different from person to person, leaving a broad spectrum of abilities. Some people communicate with words, others with sounds and signs. Some people walk on their own while others use walking aids. The list goes on and no two children develop the same. "OF COURSE they develop differently!" I say, but this still doesn't stop the feelings bubbling over when you see a child around your own child's age, with the same diagnosis, doing something that your own child isn't quite doing yet.
Another tricky layer is when your own child achieves a milestone you have been working on and you hesitate to share this experience because you know how it could make others feel, how it could make others worry if their child will achieve that same goal. It is a complex field of emotions and understanding that may need constant attention if you want to keep your focus on the positives.
When these feelings popped up in the past, I had created a mantra to repeat in my mind to keep my focus on Eli and his achievements. "Eli is Eli and he is doing amazing." Now, you all know how amazing I think both of my kids are, this goes without saying. This mantra helped when my mind automatically went into comparison mode. It pulled the thoughts back to my reality of knowing and feeling with every fibre of my body that my kids are pure potential, perfect in their own ways, developing exactly as they are supposed to. The moments of comparison only come up every now and then but my overall feeling of pride and love stretch into every moment of the day.
I decided that I was going to be a stand for celebration - whether that meant for my own child or for the child I just connected with who lives on the other side of the globe. I could not control the feelings of others but what I could do was share Eli's accomplishments no matter how big or small and celebrate the accomplishments of all others in the spirit of love and appreciation. This was such an easy stand to take, there is so much awesomeness out there and I can tell you that I have never felt more pure joy than when Eli achieves something he has been working on for months. I know that the other parents of kids with exceptionalities feel the exact same joy - it is such a gift for us in this community. Our kids work hard and they deserve a high five!!
So the next time you see a child who does have exceptionalities, please, PLEASE, don't let your mind move into a place of comparison and think of what they CAN'T do, that will only create pity and sadness. Instead, celebrate with us and share our joy - it is a pretty amazing feeling and we want to share it with you.
Love and light,