Dear Fellow Therapy Mama,
I just wanted to let you know that I see you.
I see you transporting your amazing kiddo back and forth to their therapy faithfully. I see you there, tired, exhausted, worn out, beat up, and pressed in from all sides. I see you sagging your shoulders, trying to figure out how to fit it all in. You are not alone.
You’re doing an AMAZING job raising your kid and getting them to their therapy sessions.
And you know what? This is hard. This life of raising an amazing kid with extra needs is HARD. But because we love our kids fiercely, enduring this crazy is worth it.
15 Things I Wish I Had Known
As I reflect back where the last few years have taken us (especially the last 10 months), I wanted to record some of the truths/nuggets of wisdom I wish a fellow mom had shared with me at the beginning of our journey. Granted, many of these principles one really may not fully grasp until fully in the trenches. But in years from now, I want to be reflect back and remember where we’ve come from.
1. Your house will be a mess.
Oh, you thought it was messy before? Now it’s going to be a whole new level of mess. You would think spending MORE time out of the house means it would stay cleaner, but nope. You’ll get home and dump all your stuff so you can attend to the billion other things that need your attention (like, feeding your family, catching up on medical bills, making sure your toilets aren’t growing science experiments). I still haven’t figured out this mystery: somehow, the more therapies we add, the worse the house gets. I think we’d be dead without the strategies we learned from The House That Cleans Itself.
BOTTOM LINE: Embrace the mess and give yourself grace. Don’t beat yourself up, but also don’t be afraid to ask for help.
2. Your kids will have therapy homework which means… YOU have homework.
Right now between the two of them, my kids are enrolled in a total of SEVEN different therapies (including speech, occupational, physical, and vision) and each have homework. It’s exhausting and overwhelming to keep track of who-needs-what-how-many-times-a-day. The worst is when you can’t remember where you placed that homework assignment you scribbled on the back side of a USED POST IT NOTE while you’re frantically chasing your child who just dashed down the hallway — and you haven’t even made it to the car yet.
BOTTOM LINE: Mamas, we’re super heroes. We really are. Also, it may be worth getting yourself organized and a folder or planner to write everything down.
3. Sometimes you feel like you collect therapies like baseball cards.
We first started with speech therapy for our son. I was so proud of how hard he worked! But soon we found ourselves being referred out to occupational therapy (“what on earth is that?!”). OT lead to his physical therapy. Which led us to realize how much our OTHER kid was struggling years after having broken a leg. Which led us to… you get the idea.
BOTTOM LINE: Gaining another therapy does not mean you’ve failed. Think of this as a team who is surrounding and supporting you and your family.
4. You’ll find yourself compromising to make life easier.
When my kids were babies, we embraced the crunchy lifestyle. We were all about re-usable napkins, composting, recycling and even considered cancelling our trash service because we hardly generated any waste. Fast forward to now… I’ve eaten off of paper plates for the last
four five months straight. I buy plastic silverware in bulk from Costco. We eat gluten-free chicken nuggets and buy yogurt in small portable cups so we can have breakfast before we dash out the door to several hours of therapy. When my husband served dinner last week on our simple Corelle plates, I forgotten how nice it was to eat on “fine china.” I’m pretty sure we’d starve to death without our homemade Instant Pot freezer meals.
BOTTOM LINE: Compromise is not always a bad thing. And sometimes they can produce unexpected joy, such as our new tradition of Chicken-Nugget-and-Movie-Night.
5. Your at-home hours will look really different.
When I was first mapping out our crazy therapy schedule, I made a cute color-coded schedule (including what time we would wake up and how we would use our sporadic at-home hours). Pardon me while I uproariously laugh at myself. HAHAHAHAHAHA. I quickly realized I needed to let my kids have the freedom to sleep in as much as possible. Their bodies were working HARD and even though they bounded out of the office with great energy, by the time they came home they needed DOWN TIME. The good news? We’ve been at this almost a year now and we’re getting used to the crazy. And we’re even thriving while doing homeschooling on the go.
BOTTOM LINE: Don’t underestimate how hard they have worked, even when the work doesn’t seem hard. Allow your kids down time to look at a book, lazily push cars across the carpet, watch a movie, or just swing outside in the quiet. They need even more time to recharge than you realize. And YOU need recharge time, too.
6. Your stomach may clench as you silently observe therapy.
I have the blessing of observing many of our therapies — but I didn’t realize how much I was sitting by the sidelines, silently willing my child to complete the task. I found myself catching my breath as they tried to tie a shoelace (unsuccessfully) for the 5th time. You may wince when you see your kiddo run away from the therapist. Or close your eyes when you make a new revelation about where they are at — because while you knew your kid had awkward balance, you didn’t realize they couldn’t even support themselves on one leg.
BOTTOM LINE: These emotions get easier with time. While you’ll never stop being a cheerleader for your child, with grace, patience, and prayer, you will learn that it’s okay for them to fail. But don’t be surprised if these emotions do a sneak-attack-surprise when you least expect it, either.
7. You’ll wrestle with guilt that your kids have more fun with the therapist than they have with you.
We’re partnering with FANTASTIC therapists who make therapy absolutely FUN. I’m so, so thankful for the hard work they put in! But sometimes, if I’m honest, I struggle with guilt that the therapist gets to be the Fun Person and I’m just Boring Mom who drives them around, cleans house, cooks, and does homework. We still do fun things together, but my inner struggle is real.
BOTTOM LINE: STOP THAT GUILT! RIGHT NOW! Guilt will be your #1 enemy. It will rob you of your joy and allow bitterness to creep in. And it will never stop attacking you. EVER. You are their MOM and your kids love you to pieces. When they scrape their knee, awake scared, or need a hug, they won’t ask for their therapist. They will look for YOU. No one — and I mean NO ONE — can replace who you are. So don’t buy that lie.
8. You must find your tribe.
Raising a kid with special needs can be isolating. I am so thankful for friends and family who have come alongside to encourage us. When we’re in a funk, struggling through a plateau, or overwhelmed with life, I’m so thankful we have people we can call, message, text, or show up at their doorstep.
BOTTOM LINE: Don’t be afraid to join therapy-focused Facebook groups. Start a private page for your family and invite trusted friends to journey alongside you. There is beauty in walking alongside others who are army-crawling through the same trenches.
9. You will get lots of unsolicited advice, including bad advice.
Be prepared. Well-meaning people will offer you solutions. Some may be helpful… and some will just be BOGUS. Learn to smile and move on. I have come to the conclusion that human nature HATES to be uncomfortable, and so when humans are uncomfortable,
stupid weird things get said. We’ve probably done it to others at some point. Give grace and be prepared.
BOTTOM LINE: Learn what voices you can trust. And when you feel yourself getting to the point of “tell me I should try XYZ one more time and I will cut you…” remember that person is probably feeling uncomfortable and is only trying to relate to you with the (limited) knowledge they have.
10. You will have a growing awareness of the special needs around you.
Our growing awareness has given me the comfort and courage to reach out to strangers. I recently approached a worn out parent at the park whose kid was chewing on a sensory stick. I smiled and said, “We love Chewy Tubes! My son likes green ones best. Is that color their favorite?” I will never forget her look of relief (thank you for not judging me OR my child) and hope (someone else is walking this journey!).
BOTTOM LINE: You never know who you might bless by being open and vulnerable about your own journey. And you might just make a much-needed friend along the way.
11. Your Amazon Wish List will look very different.
A few years ago my Amazon wish list was a mix of fiction books, coffee mugs, kitchen tools movies, and Little People toys. Now, my wishlist is a hodgepodge of sensory toys and therapy tools, like:
- chewy tubes
- body suits
- weighted vests
- bouncy feet bands
- wobble seats
- mountain steps
- tangle fidgets
- and many more.
BOTTOM LINE: It’s okay to geek out when you discover something really cool for your kid. We all do.
12. You will feel like you constantly have defend/prove your child to other people.
If you gave me a dollar for every time someone said, “Oh, but they look seem fine!” I could pay off all our medical bills right now. Sigh. I find myself stumbling, stuttering, and unsure what to say — like I need to prove that my child needs help (which sucks, especially if your child is standing right there) or defend our choices of supporting our kids. I promise they aren’t attacking you, but you will still feel this panic/anger rise up in you.
BOTTOM LINE: Be prepared. Have a response ready. My favorite come-back: “Thank you. We’ve worked hard to make that happen.”
13. You will feel conflicted when people tell you that these are the ‘best years of your life’ and it all goes by so fast.
The fifth or sixth time a well-meaning older individual told me that these were the best years of my life right after starting our punishing therapy schedule, I barely maintained my composure until I made it to the car where I cried like a baby. These years? THESE YEARS?! These years are HARD. I’m fighting some scary diseases, recovering from surgery, helping my two children navigate their own recently diagnosed lifelong diseases. It’s been wave upon wave. In that moment I gripped the steering wheel and sobbed: if I barely have the ability to live now, how can I handle more life to come?
Yes, these are great years. But every year is a great year. These are also hard years. And every year is a hard year. I love the message of this article that describes parenting like climbing Mount Everest.
“Brave, adventurous souls try it because they’ve heard there’s magic in the climb. […] They try because during the climb, if they allow themselves to pause and lift their eyes and minds from the pain and drudgery, the views are breathtaking. They try because even though it hurts and it’s hard, there are moments that make it worth the hard. These moments are so intense and unique that many people who reach the top start planning, almost immediately, to climb again. Even though any climber will tell you that most of the climb is treacherous, exhausting, killer. That they literally cried most of the way up.
And so I think that if there were people stationed, say, every thirty feet along Mount Everest yelling to the climbers — ARE YOU ENJOYING YOURSELF!? IF NOT, YOU SHOULD BE! ONE DAY YOU’LL BE SORRY YOU DIDN’T TRUST US!! IT’LL BE OVER TOO SOON! CARPE DIEM! — those well-meaning, nostalgic cheerleaders might be physically thrown from the mountain.”
BOTTOM LINE: Don’t throw your friends (or strangers) off the mountain. But you can recall this Mount Everest analogy to help you smile. Remember: the climb is hard, gut-wrenching, and worth it. It’s okay to cry.
14. You will begin to recognize that good things for your kids are aren’t always good things for YOUR kids.
This summer we intentionally sat out of summer camps, special programs, summer concerts, certain field trips, and VBS programs. It was hard. Nothing is inherently wrong with any of these things — they are good things. It takes great courage to recognize and admit that these experiences wouldn’t be a blessing to your child, even though you really, really wanted them to have that experience. Most recently, this meant we had to step back from our 4th year participating in our beloved homeschool community (Classical Conversations). Being an adult is hard.
BOTTOM LINE: Watch out for that guilt again. When you feel it rising, give it a good ninja chop in the face. Fight for freedom instead; focus on the experiences you are giving your child. And maybe stress eat some ice-cream. I won’t tell.
15. Your therapist will become a crucial part of your life.
I feel like my kids’ therapists have become such deep and special parts of our lives. They are walking in the trenches with us, helping us gulp for air. They laugh with us and cry with us. I like to pretend they will be here forever. But the fact is, schedules change. Jobs shift. Insurance morphs. Kids graduate from programs. And suddenly, you find yourself saying goodbye without warning to someone that you — and your kids — really care about it. I once read an internet meme (mis)attributed to A. A. Milne: “How lucky I am to have something that makes saying goodbye so hard.”
BOTTOM LINE: It will be hard when it comes time for your kids to leave their therapist. But it will be hard for you, too. And that’s okay. Friendships are a beautiful thing. Saying goodbye never gets easier. But I am so glad we were so blessed to have something to say goodbye to.
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