In honor of MOTHER'S DAY, there will be two blog posts this week!
- First, a guest post from my dear friend Colleen Arturi (below)
- And later this week, a post from me on triaging "crises" on the homefront
Hope you enjoy these great insights from Colleen, and be sure to come on back later this week for some Schulte girl comic relief!
MOTHER'S DAY: PART 1
I met my friend Colleen (then Wilson, now Arturi) in 2001. We were studying abroad as part of the Missouri-London program during our junior year of college, back when Coldplay and H&M were fresh out-the-gate, and foot-and-mouth disease was running rampant across all of England - preventing us from eating beef for four months (for fear of brain-curdling side effects) and forcing us to stay inside the tour bus while driving past Stonehenge. Not tiny Stonehenge, the real one.
Colleen and I were flatmates on Nevern Place in the Earl's Court neighborhood of London. We will never forget those days:
Our experience was the BEST: Exploring an amazing world city, walking to South Kensington for class at Imperial College, commuting via tube to media internships, traveling across England on weekly cultural excursions, and clubbing to house music like it was our job. It kinda was.
Our flat was the WORST: Trickling water pressure, a space-saving laundry machine that (in theory) both washed and dried clothes, two bedrooms for six girls, and a sick living room couch that we sat on as an absolute last resort.
Ah, the memories!!
Today, Colleen and I both live in Chicagoland, lucky me! She is one of my best besties. Here we are celebrating her birthday at a great little sushi place in Oak Park.
Colleen is the kind of friend who goes into the trenches with you, lifts you up, and reminds you who you are, all-the-while inspiring you to dream big dreams. I love her and her family endlessly. Just can't get enough time with Colleen, her husband, Jon, and their sweet son Hobie.
I'm also super proud of Colleen for starting her own business! She is the founder of The Story Shoppe, a branding boutique for small businesses and startups. See what I mean about dreaming big?
Colleen and I have made half-a-lifetime of memories together, but we also share a similar momma experience: Having a first-born child with special needs. I hope you enjoy this special MOTHER'S DAY week post: Colleen's warm words of advice for moms (and dads!) walking the special needs walk.
In Colleen's words:
My son Hobie, age 18 months, was diagnosed at six weeks of age with profound unilateral hearing loss and a condition called Auditory Neuropathy. What does this mean? He is almost completely deaf in one ear. The sound he does hear in his left ear is distorted. Like radio static. To hear what this sounds like, check out this simulation.
Think about it like this: Imagine setting up your stereo system in mono, using just one speaker, with no surround sound. That’s kind of how Hobie hears.
If you are sitting right in front of him, and even up to six feet away, he can hear you very well. But if you are behind him or shouting to him from another room (“Stop pulling the dog’s tail, please!”), he might not hear you at all, or not very well. I like to joke that he’s not much different from every other child in that respect.
Here is my son at his first ABR test (Auditory Brainstem Response). The test uses a special computer to measure the way his hearing nerve responds to different sounds.
We don’t know a lot about what he actually hears right now, mainly because he is too young to tell us. I mean, the kid is still working on saying banana, so he can’t really be like, “Hey mom, it’s difficult for me to hear you when you ask me what I want for dinner from the kitchen.”
If your child has been diagnosed with a special need of any kind, it can be overwhelming and isolating at times, but it can also be really, really cool and inspiring at others.
Here are 7 simple things I’ve learned as a new mom (operative word being new!) to help you along the way:
1. Find Your People
One of the first things I did when my son was diagnosed with hearing loss was jump on Facebook. I actually wish the audiologist who diagnosed my son would have told me that, because it has been one of the greatest sources of information and strength out there. Parents from all over the world can connect and relate to each other’s journey.
I also was connected (through our audiologist, thank you!) to a community for kids with hearing loss called Guide by Your Side. They were very helpful in giving me the names and contact info of real parents in the area who knew specific things about what Otolaryngologists to seek out, what schools/programs could be good for my son, etc. Most had school-aged children, and it was EXTREMELY inspiring to hear stories about their kids doing things that kids with typical hearing do.
2. Therapy is Play
At our first therapy session, the developmental therapist whipped out a bag of toys. I was like, HMMM HOW IS THIS RELEVANT TO MY SON’S GROWTH, LADY? Then I realized that play really is how babies and kids learn about the world. I am not sure what I was expecting -- fancy flashcards, maybe? (Yeah, I know --- what’s he going to do with flashcards but put them in his mouth and get papercuts… oops.)
There will be lots of fancy gadgets and tests and clinics on your journey, but from what I can tell, therapy sessions are meant to meet your child where he or she is. That means guiding therapy around play the child is interested in and taking cues from life to make things relevant. Also, quite awesomely, it often also means a lot of therapy can take place in your home. YAY!
3. Celebrate All the Time
We already do this naturally as parents, but it bears repeating: Marvel at every little thing they achieve. Every. Little. Thing. Whether your child is using a utensil more adeptly, or they are doing better at making eye contact, or maybe they are even mimicking you for the first time. Whatever it is, just stop to WOW over it, for yourself and for your child. Appreciate the small stuff, because well, it’s all small stuff.
4. Advocate
This is hard. I don’t know about you, but I often times have problems speaking up for myself. I am still learning how to be an advocate for my own needs, so at the beginning especially it was sometimes difficult to even know when and where I should be advocating for my son. One key thing I will have to do as he gets older is to always make sure a speaker - say at storytime - is on his typical hearing side, so we can make sure he is hearing as much as possible.
Here in Illinois, we have a great resource called Early Intervention that will help get your child lined up with necessary therapy services from birth through three years of age. There are similar programs in most states. Please do yourself a favor and check for services in your area. And be sure to ask lots of questions of whomever you’re interacting with, as you might learn about more services that are available to you.
(Special shout out here to our therapists through Early Intervention and Child’s Voice. They have taught me so much about advocacy, hearing loss and therapies for my son!)
5. Balance Trade Offs
Winter in Chicago brings the worst stuff - slush, gray skies and germs everywhere! My son is on his fifth cold since the beginning of the year (which means I am about to start my fifth cold of the year too, amirite parents?) Recently, we learned Hobie has fluid in his ears, which could but hopefully won’t, damage long-term hearing in his good ear if it sticks around too long.
I have never given my son antibiotics but lo and behold, his otolaryngologist suggested it may help get rid of the fluid. The day this happened, I was served an article on Facebook that talked about how antibiotics can potentially affect the gut microbiome in a not great way, making it paradoxically tougher for them to fight infections in the long run. GREAT. Now I have to choose between potentially damaging my son’s hearing and potentially ruining his immunity FOREVER? Thank you, Internet for ABSOLUTELY NOTHING but guilt.
It’s decisions like these that all of us parents have to face every day. Instead of thinking about these decisions as judgments on me as a parent and the good mom/bad mom complex, lately I’ve been trying to think like an economist: It’s all about tradeoffs. Because in life, there really is no such thing as the right decision. It’s about making the best decision possible with the information you have at the time. That’s it. And when you are choosing ANYTHING in life over another thing, you are simply weighing outcomes against one another. The path you choose is not inherently good or bad, it’s just a path. (Cue chill yogi chimes.)
6. Focus on the Long Game
Another parent came up to me the other day and asked “Hey - is your son’s hearing ok now?” LIKE WHAT IS HE TALKING ABOUT. Oh yes, dude, his deafness just poofed away!
Then I realized he was just trying to be polite and ask about my child. He really didn’t know better and wanted to earnestly ask about my kid, though *eee* it did come out kinda wrong. Raising a kid, and especially raising a kid with special needs, forces you to look at the long term. I am pretty sure the super cute activity table I bought him will not have any bearing on his success later in life. But I do know that being consistently supportive of him will help him.
So keep the long game in mind when distracted by new toys, or even new technologies, when it comes to your kiddo’s special need or needs. Yes, a new surgery may help your child, but no, it will not be the magic ticket to success. You know what will help them succeed the most? YOU. (Well, ok and them. Kiddos are totally amazing and resilient.)
7. Keep it Positive
Ignore the Haters. That’s including that itty-bitty-s*itty committee inside your head. The voice that says “You need to do more.” Maybe it’s because I was a cheerleader in a previous life, or maybe like, everyone does this in their inner monologue… But whenever I am feeling down on myself or worrying too much, I think to myself, “You are already everything your child needs.”
I like to call myself a recovering perfectionist. And I really have my son to thank for that. I don’t know why it took me so long to realize this, but expectations and reality have a funny way of being incredibly far apart. No matter what kind of parent you are, do your best to chuck those Pintrest-y looking notions of parental perfection out the door. Real life looks sooo much different than the Internet, and it’s also sooo much more fun. Do not be too hard on yourself and celebrate those little parenting wins for yourself, too! You. Are. Amazing. (Especially if you’re a regular reader of Anitra’s blog.)
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Thank you to Anitra for being a wonderful friend since forever (college seems eons ago) and for allowing me to contribute to her fantastic website. I am so honored to know such a wonderful person, mother and thinker. I love you, woman! And if any of you moms out there have tips for special needs parents, please say so in the comments.
Colleen Arturi loves cheese and her puppies Bill Murray and Wizard, and will dance to literally any type of music. She is the founder of The Story Shoppe, a branding boutique for small businesses and startups. Learn more at www.thestoryshoppe.com.
And final note from me, Anitra here! If you are interested in reading about ways to help a special needs momma, hop over to this post HERE, which I did earlier in the year. See you again soon!