It stands out to me as one of the milestone memories of my high school career. More than any pep rally or school assembly, I remember the day the girl with down syndrome stood in front of an auditorium filled with whispering brand-name jeans and hand-holding, brace-faced band geeks and silenced us.
“What the hell is normal?” Her slow and broken speech seemed to echo. There was something about a girl with such an evident disability reciting such a poignant poem that more than a decade later I can picture her standing on that stage more composed than I could ever have hoped to be.
I’m not sure what she was reading from or if it was something she had written, but she compared herself (with all of the differences that tend to define kids with down syndrome) to other students her age. She pointed out the hormonal angst of the teenage years and the awkward cliques that developed in social settings, and admitted that she, too, fell victim to late night ice cream binges. She compared her physical therapy with gym class, and lamented that down syndrome or not, she probably wouldn’t have had a date to prom because she refused to wear a dress.
She ended with, “So when you’re sitting on the bus with all your ‘normal’ friends or you’re sitting around the table eating dinner with your ‘normal’ family tonight, consider this: Maybe I don’t have an extra chromosome. Maybe you’re missing one.”
It was brilliant.
My oldest son, Jude, has what experts call a global developmental delay. He didn’t walk until he was almost two, and at three, he only says a handful of words. He has some sensory processing stuff that is finally starting to make sense of some of his quirks (i.e. his absolute fascination with baby wipes), and his speech and language evaluations indicate that we might be dealing with Developmental Apraxia of Speech (DAS).
Essentially, his receptive language (what he understands) is much better than his expressive (what he speaks), and his muscle tone and reflexes are not quite as mature as we would like them to be for a three year old.
That said Jude is also one of the happiest, most charismatic kids I have ever met. He loves hard and out loud, with big hugs and sloppy kisses. He seems to carry around this incredible charm, selectively picking out people at the grocery store and blowing them kisses or sticking his hand out to shake hands with the postman. He chases the wind and tries to drink up the sun. He’s pure joy.
So part of me wants to wrap him up in my Mama cape and guard that tender, precious heart; build a fence around his developing personality to keep out anything mean; bottle up that laugh of his and distill it from all impurities.
The first play date we ever had, the other boy pushed my baby to the ground. I promptly got up and threw the kid against a wall, took him by the collar, and explained that if he ever did it again, I would make sure his grown-up teeth never came in. At least, that’s what I did in my head.
In real life, I let Jude sit on my lap for a little while and then cheerfully guided him to a different toy. I let him know that everything was going to be ok, silently convincing myself the same.
Ahh, the inner vows we make as mothers:
I will make sure no one ever pushes you down again, little buddy.
Oh . . . you’re upset because you can’t have more cookies? Well here, I’ll bake four dozen, delicious and gluten free just for you.
I’m sorry you fell off the slide! We don’t have to visit another park for as long as you live.
And that dog scared you? I’ll write a letter to Congress to make sure that dogs more than 5 pounds are banned from Texas forever!
Of course I know this is unrealistic–unholy even. My job as a mom is to insulate, not isolate. All those things, those small heartaches and minor discomforts, are character building, the mortar for him to be a responsible citizen. Blah blah blah blah blah.
Nevertheless, when I drop him off at pre-school (or anywhere outside the comfort of our home, for that matter), I can’t help but think of all the possible worst-case scenarios.
What if his teacher doesn’t understand the altered sign language that he uses to communicate with us? He will stand in the middle of his classroom silently begging for a drink like a man in the desert, dehydrating before he ever gets home.
What if one of his classmates tries to take a toy from him and he mistakes it for an invitation to hug. He’ll be that weird, overly affectionate kid that doesn’t understand personal space.
Heaven forbid they bring out baby wipes. He’ll start wiping his face and the counters and the floor . . . and then the faces of all of his peers.
I’m not sure if the little guy understands the scope of it all or not. To him, his therapy sessions are basically opportunities for him to get some one-on-one attention from grown ups that bring cool games. But the journey has been a difficult one for me as a mom.
I’ve had to quiet some pretty loud critics (inside my head, and out), and I certainly had to stop brooding over the developmental milestones that we weren’t checking off in a timely fashion.
I’ve had to remember the thick, muddled voice of the girl with down syndrome, and ask myself the same question. What IS normal?
We have done genetics, bloodwork, x-rays, brain scans, allergy tests, reflexology . . . all sorts of things that seem to be searching for answers that tell us what is wrong with Jude. But no machine exists that can scan his character and chart his destiny and tell us everything that is right.
Those are the things that I’ll have to contend for as his mother. Jude’s gifts are unique, woven in my womb just for him. His challenges are simply opportunities for growth, and I’m personally convinced he’ll talk when he has something to say.
So when the developmental milestone brackets start looking a little threatening and you’re scared your child might not make the next tier, let me remind you that there is no chart for greatness. Take a deep breath, and take that tiny face in your hands and let him know just how amazing he is.
After all, amazing is better than normal any day.
Tell us and FWMB readers what is amazing about your kiddos!
As the mother of a child with developmental delays, this is exactly what I needed to read. Thank you so much for sharing! My sweet boy is wonderful and I wouldn’t ever trade that for normal!
Thank you, Ashley. I think it’s important that we share our stories from time to time just to let everyone else know they’re not alone. I appreciate you commenting.
Beautiful. Thanks for sharing your heart, the hurt, and your hidden
fears with us. There is nothing that can compare to the love
we have for our children.
Jude is blessed to have you as his Mom.
Normal is what you make it for your family. A happy and
safe place, with lots of laughs and love.
My mom is Angela Ridings and friend with your mom-in-law. I remember hearing about your beautiful engagement at women’s conference and I also have a Jude and he is 4. He is not very coordinated and didn’t start talking until he was almost 3. I am not comparing the 2 but I just want you to know I can definitely relate to the anxieties about the delays and the rude things people say. I pray for your family on this journey, for revelation and strength.
Thank you for sharing this- it’s just the reminder I needed as my own son with developmental delays and autism starts pre-k in a few weeks!
Oh Jody, what a gifted writer you are! God bless you for sharing all of this with others! Jude is a beautiful boy and a special gift to this world and most especially your family! We have a little guy neighbor who has Down Syndrome and he is the most joyful, happy child! He is a gift and the kids on the school bus and in our subdiviision are protective and loving toward him! Thanks for your transparency! You said in beautifully and truthfully!
Thank you. These were the right words at a very stressful, scary point in our lives.
Thank you for sharing your heart with all of us. In today’s world it’s so easy to judge by pictures and what we think is the normal ways of a child. My daughter Gabriella will be 3 next month and has no interest in potty training or giving up her bottle at night. She is stubborn in what she loves! : ) In this Mommy hood of life your words spoke right to my heart. So thank you for encouraging my heart and being such a great example of how we should see our children. Bless you!
Such raw emotion and such a blessing to us to be able to read it. As a momma with a delayed little lady, it is exhausting and scary and painful to watch your child “suffer” through the milestones. I love that you have set the milestones aside and decided to just focus on Jude. We will begin praying for Gods direction and guidance for your family. McKenna didn’t talk much until she was three and i agree with you…when they have somethig to say, that’s when it will all come out. 🙂 prayers for you friend
I’m a worrier. Have been all my life. When my son was born at 23 weeks my worry and anxiety hit an all time high. He’s now 20 months and is the light of my life. We get assessments to fill out and have many doctors asking what he’s doing. Whenever something comes up that I have to say no to, it feels like there’s a deficiency. I feel guilty. I feel bad for him. Thing is, he has no idea. He’s happy and incredibly social. He’s loving and feisty. He still has the look of a new walker but he hustles around with absolute joy. Thank you. Thank you for reminding that he is who he is and he is perfect!
I adopted my son at four and I knew he was behind. However, I kept pushing him! Thinking it’s just because of his liiving situation. Now he is seven and I’m just learning to accept it. He is teaching me, “patience, acceptance, not to care so much what others say and unconditional love and much more” I’m a work in progress!!!
Thank you for your lovely reminder post.
I love this! We are located in Orlando, FL. Sometimes I find myself comparing my kids to others and have to snap out of it. My oldest is 3.4 years old and sounds EXACTLY like Jude. We have done all the labs and tests, she is in therapy, loves wipes, apraxia, sensory issues, genetic testing (extra xp21.1 chromosome), you name it she has it or done it. It would be awesome to meet someone just like my baby girl. She is amazing!
I love hearing from the Jodys, Jo’s, Danielle’s, Michelle’s, Stacee’s and Kim’s … I too have a Jude!! My Jude will be “19” next Saturday & graduates from college in 4 weeks. These beautiful gifts from God are the most kind hearted, resilient, intuitive lives that I’ve ever seen. And YOU have been hand picked to be their mom!! The road IS tiring, stressful, saddening, challenging and sometimes disappointing. Oh…but the reward…….. Are you up for the challenge? You CAN do it!!!!!
I love this so much, thanks for sharing.
Awesome writing, Jody. I intend to share this with some parents I know, as well as some professionals. Jude is blessed to be a part of your family, just as you are blessed to have him in yours. We are proud to have known you. With love from o
ne of your many Missouri friends, Libby