Don’t be shocked when your child slows down.
The first year of Jo Jo’s life, I felt like I traveled everywhere with a developmental checklist in my hand. I watched her like a hawk to make sure she met all her milestones, breathing a sigh of relief when she sat up and started babbling, and silently stressing when she didn’t begin crawling at eight or nine months like the typical children of my other mom friends. Yes, she ended up fulfilling most items on that checklist her first 12 to 18 months, but then she started slowing down, further and further, to the point where I couldn’t ignore it anymore. I’ll never forget one playgroup when she was four, when all the other little girls invented elaborate pretend play games with their Barbie dolls while Jo Jo proceeded to treat hers like a grenade. Was it painful for me, her mom, to see? Absolutely. Did it bother her? No. My daughter was having a great time. It’s hard to learn to check your ego at the door, but sometimes that’s exactly what you need to do.
Keep your child with typical peers as much as possible.
When Jo Jo was two, I began looking into part-day programs for her, just like every other mom I knew. The difference was I didn’t know the best place to put her. A lot of other parents of children with special needs urged me to try a local early childhood program for kids with special needs. But while I visited and liked it, I didn’t feel like it was the right environment for my girl. It seemed there would be adults everywhere shadowing her every move, and I wanted her to learn to do things on her own. Jo Jo was very social, and it seemed to me that she could gain so much from being around typically-developing kids her own age. I ended up sending her to a “regular” twos program with a babysitter as her “helper,” and it was the best decision I made. She made gains in speech, learned how to sit quietly in a circle, and most importantly, made friendships that lasted over the next couple years. Which brings me to my next point…
Make play dates a priority.
Sometimes play dates may be even more important than therapy. Sounds counterintuitive, right? After all, if you have a child with special needs, shouldn’t every waking moment be spent teaching them the tools they need to navigate through life more easily? Well, sometimes the best way for any kid to learn something new is through peer role models. I learned this lesson the hard way. When Jo Jo was around two, we started her in “intensive” speech and feeding therapy that involved us schlepping to the therapist’s office three times a week. As a result, she had to miss her playgroup, as well as dance and other fun activities I’d wanted to sign her up for, but just couldn’t find the time. A few thousand dollars later, I had to admit therapy just wasn’t working. When we went to our first playgroup, Jo Jo had no interest in trying to eat with a fork or a spoon until she saw all her friends doing it. Then she took to it with gusto.
Always listen to your gut.
When Jo Jo was transitioning into the public school system for preschool, she had to go through a battery of evaluations and observations. It did not go well: She had a meltdown during her cognitive testing and performed very poorly-the results suggested she had the cognitive abilities of a nine-month-old. Well-meaning friends and family urged me not to worry about the evaluations, but I resisted; I knew my daughter was capable of more. I took her to a university child study center nearby for a second opinion. When she went in for her evaluation there, I was blown away by what the staff could get her to do. I was able to use their testing to convince the school to provide us with more services, and write more reasonable educational goals for her.
Don’t stress about toilet training.
As soon as JoJo turned two, we spent countless hours on a little pink musical potty, reading stories and singing songs, and while we both enjoyed that time together, she was absolutely not ready. Kids with Down syndrome-like many other children with special needs-have low muscle tone, and as a result take longer to gain control over both their bowels and bladder. It didn’t matter how many times I raced Jo Jo to her singing potty, or how many stickers I gave her; her little body didn’t have the capacity yet to hold it in. Sure, she was technically out of diapers by her second year of preschool, but she didn’t really fully train until kindergarten. Looking back, I realize that whole experience was stressful for both of us. If I had had more patience and even waited a year longer, it would have saved us both a lot of angst (and laundry).
Prepare for the stares.
When Jo Jo was itsy and was still in a stroller, most people didn’t give her a second glance, except for the occasional well-meaning grandmotherly types who hang out at the mall oogling at babies. But as she got older, I began to notice what I dubbed The Look: the way some people’s eyes flicked nervously over her before uncomfortably turning away. When I catch someone staring, I smile and introduce them to Jo Jo. Either they smile back and strike up a conversation, or are so embarrassed they just skulk away.
Realize it’s okay for other kids to be curious.
When Jo Jo was little, she had a playgroup she had been part of since babyhood. Once her peers hit preschool, they all began asking questions: Why doesn’t Jo Jo talk? Why doesn’t she run around on the playground like us? Why does she need someone to help her play hide and go seek? Why can’t she feed herself? These questions stung, sometimes, but I realized these children were coming from a place of curiosity, not cruelty. Even as little as two or three, they begin to realize that others are “different.” It’s up to us, the adults in their lives, to explain to them that difference is actually something to be cherished, not ashamed about. Even today, when Jo Jo’s friends ask questions, I make a point to be as open and forthright as I can.
Take some time for yourself.
It’s last on the list, but it really should be first. Your child is getting older and is finally going off for even just a couple hours to preschool by themselves. Resist the temptation to use that time to clean the house or make picture schedules and communication binders for your kid. This needs to be You Time, whether it’s going to the gym, getting your nails done, or making plans with friends. The reality of our lives is we have to be on for our kids, 24/7, so take those couple hours of alone time and savor them. Just like your kiddo is learning important skills at school, you can learn (or remember!) how to take care of yourself.
Parenting advice is given as a suggestion only. We recommend you also consult your healthcare provider.