Written By:  Tiffany Verzal

Alexis has had a full life in her five short years. She’s spoiled rotten, sees her grandparents all of the time, and is loved by so many people. She’s had more prayers said for her, and received more cards and gifts from strangers than I can count. She eats cookies before dinner and can spray me with the garden hose without getting in trouble.

But Alexis has earned it. She works hard, and she is a fighter. She got dealt a hand of cards that most of us couldn’t handle playing with, but she does everything with such determination. However, the one thing that I know she is missing in her life is friends her age and play dates. I’ll admit, this one falls on me and my frustrations and fears.

I remember listening to a podcast about shaken baby syndrome when she was first injured. They were interviewing a mom whose son was six. He had been shaken when he was a baby. She sounded so sad and hopeless when she started talking about the social aspect of his life. She said that their family felt very isolated because it was getting too hard to take him out. He couldn’t do what the other kids were doing and she and her husband never relaxed, because they needed to take care of him no matter where they were.

I didn’t really understand at the time. We were always taking Alexis places, and friends invited us to come over and play. But over time, social activities with families the same age got more difficult, and now I understand what she was saying.

First, let me say we have it very easy compared to some families. We are not on a medication schedule, Alexis doesn’t have behavior problems, and she’s our only child.

But we still face some challenges that others don’t.

One of the things that has made making friends really difficult is that Alexis has a therapy schedule that (most times) keep us from meeting up when we are invited. At one point, Brandon and I were exhausted from taking care of her around the clock and going out of our home took that much more energy. It was also really hard to watch Alexis being left in the dust when it came to peers meeting milestones. The older she was getting, the more separation there was.

We would go to gatherings from time to time, but it was so hard. The other kids would go off and play and we would have to help Alexis play too. Brandon and I would switch off and on every ten minutes so that the other one could talk to the adults.

It wasn’t miserable, but it was isolating.

I want Alexis to be a kid this summer…because she spends a lot of time not being one. So my goal is to have a lot of “kid” time this summer, have several play dates, and make a point to get together with our friends. What I hope for more than anything is that we can find a balance.

This last holiday weekend was a weekend full of parties and gatherings. There is one thing that is true, Alexis LOVES being around other kids. She was bounced around on a trampoline and did much better than we expected. Other than several people telling their children they needed to be careful, and a 7-year-old boy wanting her to get off because she couldn’t jump, it was pretty cool to watch.

She sat on a “big-kid” swing and did really well hanging on.

She/we got outran by a three-year-old for 30 minutes, but she thought that it was a blast.

She’s invited at least five people over to have a slumber party in the last three days.

She would also “like to really go back to that place tomorrow.”

I’m so glad that she is having fun and that she doesn’t notice or hear what we do. I hope that it is a long time before she ever does.

I’m sure there are some of you reading this who have friends or family members with kids who have special needs. I am also sure that a majority of the time parents of kids with special needs come across as a little too overbearing and crazy.

I just want to ask you to hang in there with us.

Keep inviting us to your parties, even if we decline for two years. There will come a day when we are ready to go. And if we bring our kids and we end up in a corner with them, please come and sit by us and talk. While it may not seem like it, we are often having a great time- because we’re getting to see our kids do things they don’t normally get a chance to do.