There are lots of articles out there praising parents as superheroes for raising children with Down syndrome or other conditions, but what if you’re a mom or dad who’s perfectly average? What if you’re the kind of parent who usually has to beg forgiveness from the room mom for forgetting to send in cash for the teacher’s birthday? Or you recycle Halloween costumes from year to year as long as they fit? Is there any hope for you and your child? After talking to a number of moms who also consider themselves satisfactory, the short answer is “yup, you can still raise a child with a disability without being a superstar all the time.” So, listen up, because this list has taken us a few years to put together. After all, life is busy when you’re constantly putting out fires for all of the kids, working, going to school, and basically keeping it together.
1. Eat chicken nuggets, pizza, Goldfish, and ice cream.
Ok, so nobody should do this all the time whether they have a disability or not (especially if they have celiac disease or allergies), but sometimes the parents of kids with Down syndrome feel like they absolutely must feed their kids all organic, grass-fed, Omega-rich, antioxidant diets with supplements galore. That’s great for people who enjoy that lifestyle and the benefits I’m sure it provides. I wouldn’t know because that’s all really expensive and hard to do even though I admire other people with the stamina to do it … just like I admire the room mom even though I’ll never do that either. But kids with Down syndrome are also perfectly fine eating what everyone else in the family eats and just taking a multi-vitamin as a supplement … on the days you remember.
Stacey shares, “I find goldfish to be an invaluable tool at teaching dexterity, patience, strengthening of pincer grip and problem solving skills. Digging those little suckers out of couch/car seat crevices is hard work. Also useful in building immunity as you never really know how long they have been there.”
2. Encourage speech through humor.
Sure, speech therapy is tried and true, and you should talk to all your kids as much as possible when you’re not hiding in the bathroom from them. But my family has also been surprised by the impact of humor in teaching both speech and comedic timing.
For example, one day we were preparing to leave for Boy Scouts. My 14-year old son with Down syndrome was trying to encourage his sister to hurry and finish up dinner and said, “Eat Kate.” I promptly responded, “We don’t support cannibalism in our family Andy.” As you’d expect from a teenage boy, he rolled his eyes and then used a longer sentence, “Eat your dinner please, Kate.”
Nancy recalls her daughter Gabby’s conversational skills resulting from a moment of sarcasm. Gabby proudly told someone, “Mommy has babies in her belly. They are twins. Their names are wine and chocolate.” Excellent speech! This can also be the start of a biology lesson which includes the gestation period for human beings (which is not five years).
3. If you don’t have the money or energy to go to the store and buy your kids the latest gadget, let your kids play with random things.
Sometimes kids learn quite a bit when you just let them try stuff while you’re looking at Pinterest and feeling inadequate.
For instance, when my son was 7-years-old, I was surprised when I heard music blasting from his room because we hadn’t gotten him a music player or a speaker or anything. We were shocked to find he had actually fished out the right cords and had piped music from his dad’s iPod into my 30-year-old keyboard. Who knew that was even possible?
4. Give lots of opportunities for “self-reliance.”
The names have been changed in these examples to protect the mediocre.
One mom describes, “When we went biking as family one day, my 16-year-old son with Down syndrome stopped to take a break at a picnic bench while I picked up my daughters from another part of the bike trail. When my son’s friends showed up and asked to talk to him, he was nowhere in sight. Usually I don’t worry in these situations because my son is pretty independent, but I have a friend who keeps teasing about losing him. So I rushed up the hill back to our house about a mile before realizing there was no way he’d gotten that far in such a short amount of time. When I went back to check the bike trail, there he was sitting on the picnic table. I asked him where he went, and he said, “I went to the bathroom and then fell asleep on the table waiting for you.”
Another mom shares, “One time I walked one short block to give my other son his baseball glove, and my son with Down syndrome called 911 because he couldn’t get an internet connection. I was gone literally three minutes. When the officer arrived, I told him my son used his amazing communication skills to get what he needed—not that I was a bad parent for leaving my 9-year-old for three minutes. They gave him a sticker and me a look.”
5. Relax on the couch while your kid plays Minecraft or watches the Disney channel.
Sometimes parents of kids with disabilities feel like they need to be actively working with their kids every moment to encourage learning, but that can be really exhausting. So, for those of you who need to sit back and relax with a Diet Coke and the latest People magazine, it’s really okay. Sometimes those TV shows and video games teach age-appropriate play and help your kids have something in common with their peers.
Meriah shares her secret technique for teaching reading: “Moxie learned the alphabet from Dora … but everyone thinks it was my hard work/therapy.”
Heather, who is often found on her laptop, says, “Spontaneous speech like ‘mommy come here’ and ‘mommy, where are you?’ have come about for Izzy because she has a distracted mom.”
6. If your kid makes a mess, tell them to clean it up.
This is true for any kid. If they spill milk, hand them a wet cloth and tell them to wipe up. Also, if they drop those goldfish on the floor, that’s a great time to teach them how to use the vacuum attachment. Start as young as possible on this one … seriously. But also be apathetic enough that you don’t care whether they do it perfectly or not.
Of all my kids, my son with Down syndrome is the best at cleaning his room, but he tends to rearrange his furniture and pack boxes in the closet for when he moves out to the beach someday. When he was 13, I used to try to rearrange everything, but then I decided just to appreciate that he was the one kid without junk all over the floor. So, what do I care if he has a few boxes in his closet … because you never know when he might get a beach offer.
7. Skip therapy/homework and go to the park sometimes.
Kids with disabilities usually have a pretty full therapy schedule while their parents use that time to go grocery shopping, clean out the car, or wrangle with their other kids and socialize in the waiting room. It can be exhausting for the kids to sing all those rhyming songs in music therapy. So, don’t feel bad to play hookie and just go hang out in the park or with the neighbor kids—sometimes even experts can’t tell when you’ve been slacking.
Maureen confides, “I LOVE when a teacher says, ‘Oh, I can tell you’ve been working on this at home,’ and my husband and I just look at each other like, SUCKA!!!!”
A straw poll of adequate moms shows that this happens all the time.
8. Hand your kids technology to keep them entertained … like everyone else.
It’s risky letting any kid use technology, but it can be a great tool to keep them entertained and ultimately stay in touch with friends as they get older.
One day I was surprised to get a text from my son’s Scout Master saying, “I love my wife.” I thought, “Well, of course you do.” Then I noticed that the previous text sent from my phone said “I love you.” Apparently, my son sent a message to his beloved Scout Master with one of the few phrases he knew how to write at the time. Fortunately, a brief explanation helped us avert a scandal at church. Even though we’ve had some texting misfires; my son has taken 356 selfies at one time; and I’ve apparently become one of Taylor Swift’s biggest Instagram fans, Andy can now text most of his friends using Siri and makes plans with them on the regular.
9. Let your kids teach each other.
You don’t have to do all the work raising your kids. Siblings can also teach each other. Sometimes your child with a Down syndrome will learn to say, “You ruin my life” from his sister. And your other kids will also learn some lessons from their sibling with a disability, like how to make friends by leading a flash mob during the school lunch Spirit Day.
Megan shares that, “Ellie [her 5-year-old daughter with Down syndrome], feeds her baby sister. It’s messy. Sometimes she forgets and feeds the baby a cookie. But for a tired mom, who cares!
10. Ditch the kids sometimes … responsibly, of course.
Unless you’re a first time parent or something catastrophic would actually happen if you leave, don’t be one of those parents who takes pride in never leaving your children with a babysitter. It’s not a badge of honor, it’s a badge of being super tired. Go on a date or a Girl’s/Guy’s Night or book club. Plus, your child may make some really good friends.
So take heart all of you perfectly average parents (whether you have a child with a disability or not) because most of us aren’t superstars. We’re just doing the best we can muddling through each day. As long as your kids know you love them and you do the normal safety stuff, they are (usually) just fine. Take it easy on yourself and them and have fun together — or just relax and let them entertain themselves.
By Stephanie Hall Meredith, Co-Author of Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome and Welcoming a Newborn with Down Syndrome: A New Parent’s Guide. Thanks to contributions from Maureen Wallace, Meriah Nichols, Nancy McCrea Iannone, Megan Landmeier, Rachel Douglas, Conny Wenk, Melissa Kline Skavlem, Heather Bradley, and Stacey Calcano.
