Back to school talk

It’s back to school time! It’s the perfect time for parents to talk to their children about different abilities. Gabe has Down syndrome and I am only one parent so my ideas/perspectives are specific to him, but I’m sure other parents would be more than happy to give you conversation tips if you need them. Kids are naturally curious. Alyssa recently asked me why kids were staring at Gabe at Kroger and at the park. I had to explain that Down syndrome is not familiar to everyone necessarily and it’s up to us to show them that it’s not scary and it’s just Gabe being his awesome self. It does not need to be complicated and pointing out similarities with the differences goes a long way. Why does he sit down a lot? Gabe’s muscles work a little differently than yours. They get tired out easily. It take lots of strength for him to move around like you do every day. That’s why he has to take breaks sometimes, why he wears special shoes, and why he can’t always keep up. You can help encouraging him by telling him to walk as fast as you, or play tag. Why does he talk funny? You also have a lot of muscles in your mouth. He has to work on using those muscles especially well so people understand him when he talks. If you ever can’t understand him, ask him to repeat it or say it in a different way because he has lots to say and wants to be heard. Gabe eats really slow and needs help. Why? It takes lots of effort for Gabe to chew up his food. It’s also hard to get it on the fork just right. He’s come a long way in learning how to eat but you can help him by telling him good job when he takes his bites. Gabe likes to be awfully silly. You’re right! He thinks he’s hilarious. He loves when people laugh with him. If it gets to be too much though, tell him to stop. He definitely knows what stop means and should do it when you tell him. He does love joking and slapstick and all things that go kaboom! Sometimes Gabe doesn’t talk to me. Does he not want to play? You may be right. Everyone needs a break sometimes. He does watch you though. He remembers lots of things and always knows what’s going on. The key is to keep asking him and eventually he will say yes. Everyone needs friends and you are a great friend to include him. How is Gabe good friend to you? How does that make you feel? When you see Gabe trying hard how does that make you feel? **I guarantee you they say it makes them want to try their hardest too. Inclusion works! Here’s to a great school year!

3.21 World Down syndrome Day!

There are times I really really dislike Down syndrome. I hate that I have to get Gabe’s blood drawn once a year to make sure he doesn’t have leukemia. I hate that his tone is so poor that his gait is unsteady when he runs and it’s hard to keep up with friends. I hate that he gets frustrated when he stutters because he can’t get all that he wants to say out easily. I hate sleep apnea and potentially having to desensitize my kid to a CPAP mask. I hate that it takes him twice as much effort to get things down when it comes easier to a typical kid. I hate that I’m constantly taking him to therapy. I hate that I find myself getting judgy… Or maybe jealous.., of other parents when I hear them complain about having to take their kid to an extra baseball tournament b/c it’s just too busy. I hate when people judge my parenting and Gabe’s ability. I hate constantly wondering if I’m doing enough. I hate writing this and thinking that I complain too much and then feeling guilty. There are other times when I really really love Down syndrome. I love uncontrollable laughing at the silliest things. I love being greeted when I come to the door with full excitement. I love that he says I love you and gives me a kiss every night before bed. I love celebrating every success and valuing every milestone. I love the comradery in the community. I love the fact that he counts stairs when he goes up and down because that’s what kids who go to therapy do. I love that everyone is a friend. I love that other kids try harder b/c Gabe tries hard every day. I love how he senses emotions at such a deep level. I love that he changes people. I love when he says “I did it!” I love everything about Gabe. It’s hard to tell what’s a DS trait and what’s a Gabe trait b/c it’s all combined in some ways. I guess I love all things DS too then. I certainly celebrate it. The celebration is much greater than any negativity I have towards it. What I dislike is - hardship. But hardship presents itself to everyone in different ways. Maybe hardship is something to embrace as well. I actually think DS saved us. It saved us from selfishness, impatience, and being uptight. It makes us be more empathetic, congratulatory and inclusive. It helps our marriage and family grow together. It makes us better in every way. As I’ve said many times before..,never give up on Gabe! Happy Down Syndrome day! Wear those crazy socks! Guess who wanted bare feet?