I've shared that my three-year old daughter, Syona, has cerebral palsy. I haven't gone into the details of her diagnosis, but Syona has some serious delays in her speech, fine motor and gross motor skills because her muscles and brain don't communicate properly.
She has really tight (spastic) muscles and uses a wheelchair stroller as her primary means of getting around.
We work on teaching her how to walk using a walker and LOTS of physiotherapy, she doesn't yet have a pincer grasp but can pick things up using her hands. She talks but was delayed in her speech and it can sometimes be hard to understand her. Cerebral palsy isn't progressive, which means it won't get worse over time, but there's a lot we can't predict about the future in terms of how she'll move around, etc. This is the brief and oversimplified description of her disability, but I wanted to share a little more about her abilities and what our life looks like.
Big changes in a family situation, like moves, weddings, divorces and kids can have a huge impact on the relationship with family. And when you have a child who doesn't follow a typical path the impact on your family relationships can be even more significant.
Though many people would assume the added stress that comes from having a child with a neurological condition has a negative impact on our family relationships, we've found the opposite to be true. I think it's because we've our whole family sees Syona and the next generation of kiddos as an opportunity to get even closer.
Encourage independent relationships with your child. We each have our own relationships and way of doing things with Syona that play on our specific strengths. The relationship Syona has with my parents and Dilip's parents are very different. Dilip has his own way of doing things with her, and that is great. All of our underlying family values are the same, so a little bit of variation is great for fostering individual relationships and teaching Syona how to be flexible.
Ask for help. Between having a job, writing for two websites on a regular basis, the occasional freelance gig, consulting, enjoying family time, couple time, a social life, Syona's extra appointments and Dilip's job there is no way we could do it on our own. We accept and request offers of help. Whether it is some prepared meals or a day of babysitting, we say yes. If Dilip can't attend a medical appointment with me and I want another set of ears to help me listen, I usually ask one of my sisters. This provides the time and support we need and it also helps our entire family work together.
We laugh. It can be easy to take ourselves seriously and it's important to remember to laugh -- at ourselves, each other and especially at Syona and her cousins. It helps us enjoy life. We also don't hide the tough moments from each other. I've had many conversations with Dilip, his mom and the rest of our family about feeling down about something. They often aren't long, drawn out, heart-wrenching talks. Sometimes they are simply an admission that I'm having a tough day and hope that the next day will be a bit better. Emotional honesty and vulnerability can be a bit intimidating but it does get easier with practice and it is important.
We celebrate together as frequently as we can.
We actively work on building our resiliency. In fact our entire family employs a lot of these practices -- whether they formally recognize it or not. An added bonus is that resiliency is an important skill for any child to learn, but is especially important for a child with special needs. As any parents know, modelling the values and the behaviour you want to see in your child is the best way for them to learn.
By Anchel Krishna
You can follow Anchel on twitter at: @anchelk
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