Helpful insights into our lives!
My name is Zilla Q, US Navy veteran, Mom-extraordinaire, and recently turned disability blogger who wants to share tips with you from parents of disabled children. I live in a world that too many people, and not enough people live in. I joined this very elusive, elite world just days before my 33rd birthday.
It was a cold, blustery, rainy February day… wait, I made that up. Honestly, I was in a hospital on my 9th straight day of bed rest and I had no idea what the weather was like because I was not allowed out of bed for ANY reason.
I was 29 weeks pregnant with our first son and had no idea that I was about to receive an unwanted invitation to join the Disability World. I, as all new Moms are, was supremely confident that I would be having a perfectly healthy bouncing baby boy, even if I wasn’t going to get the perfect birth story that I had planned.
At 12:01 pm on February 4th, 2003, I gave birth, via c-section, to the most beautiful, easy-going, curly-headed genetic syndrome you ever saw and I was unceremoniously thrown into the Disability World.
Welcome to my world
I have now been walking this disability journey with my son for almost 19 years and we have both learned a lot. We have learned that doctors really are no smarter than a well-trained mom, that medical moms can out experience most ICU nurses and we learned that it is very hard to connect with the ‘real’ world on a meaningful level because most people just don’t get us.
I am here to tell you what most people in the disability world won’t tell you because:
1. We need to be heard and our stories valued.
2. You need a peek into this world, need to acknowledge its existence. Not because we wish this life upon you but because we need you, and the glimpse you offer us of a world we may pass through but don’t exist in anymore.
3. People who experience a disability are no longer hiding in the shadows and everyone needs to not be afraid to talk and ask questions and interact with our loved ones and ourselves. We aren’t contagious.
What every parent with a child with a disability needs
If you are lucky enough to know a family that has a child, or children, that experiences a disability, I have gathered the three most important things you need to be aware of.
- We need caffeine just to get through the day and we never have enough. Not your puny 16oz “Grande”. We need the growler size, and probably more than one.
- We need sleep. Real sleep, not a 2-hour nap. In a bed. With clothes we haven’t been wearing for 5 days straight. It is written into our Disability World contract that we can never sleep again, only nap. Maybe that’s just in my contract, I will have to check into that.
- We need someone to just listen to us, to let us know that we are indeed still human. One of the first things you lose after acquiring a child with a disability, is all your friends. It takes a pretty amazing person to stick by our side through all our ups and downs.
We need this all and not necessarily in order.
Now for what we REALLY need you to know about us
Here is the stuff that most disability parents won’t tell you or even admit to.
- We grieve. We grieve the loss of the perfect pregnancy and birth, we grieve the loss of all those firsts; the first time they rolled over, their first word, the first step. My son is 19 years old and he has never said ‘Mom’… he has signed ‘Grandpa’ but never Mom.
- Never, Ever, Ever call us superheroes or tell us you don’t know how we do it. By saying that, you are saying you think we should just abandon our children, that we don’t have the strength to be their parents. That part is true, we don’t have the strength to be their parents but we just dig deeper to find that strength when we don’t have any more to give. It’s what any parent would do; it’s what you would do if you were in our shoes. There is no difference between us.
- We are scared, no, TERRIFIED, of what the future holds for our child, and because of that we tend to live in the here-and-now. We don’t plan, we don’t have long-term goals, we just live for the Now.
- There are not enough hours in our day to do everything. We have to prioritize those things you take for granted. You take your clean house for granted. For me, an immaculate home uses up too many spoons. If you are unfamiliar with this term, Google ‘spoon theory’. I do exactly what I have to do and nothing more. Job, kids, homeschooling, doctor appointments, dealing with insurance, bills, and shopping, there just are not enough spoons in my life.
- We are envious of your normal…when we have the time and energy to think about it.
- Just listen to us. We don’t want advice or judgment, just listen to our fears, our happy moments, and ‘that stupid doctor!’ bitch sessions.
- You may think your advice is helpful but it’s really not. We take it as a judgment that you think we aren’t doing enough.
- Don’t ever mention ‘self-care’ to me! If I had time for things like that, don’t you think I would be doing them?? Reference item #4.
- We isolate. We isolated before COVID, we will isolate after COVID because that is a thing we do for various reasons; kids with weak immune systems, fear of judgment, and we are just too busy and tired to have time to socialize. We would love to, but reference item #4.
- It is really hard for us to leave the house whether our kids are young or young adults. We have to prepare for all eventualities and pack for an army.
- We don’t want to think about the future because if we do, it usually involves planning a future for our child without us or planning a future for us without them, and neither of those things we want to think too hard about. Reference item# 3.
- Offer to help! If we protest, we really don’t mean it, we are just being polite.
- Don’t smell us, just assume we haven’t had time to shower this week.
- Check in with us…please…you calling just to say hi could be the brightest point of my day.
- Just because I look happy and together on the outside, doesn’t mean I am not a hot mess on the inside.
- We are walking, talking medical records for our kids, and can quote a full surgical history at length but don’t expect me to remember what we were just talking about 30 seconds ago; be patient and get used to it.
- We crave encouragement on this exhausting journey we are on. Be genuine, reference item #2.
- We are very sleep-deprived. End of story.
- Accept me, accept my child.
- We try to pretend that we have everything under control, and we do, except for doctor’s schedules, insurance companies, specialists, therapists, housework, jobs, schools, tantrums (mine) – you get the picture.
- Stay away if you even THINK you might be coming down sick. It’s not just a cold to us, it could mean the death of our child and you don’t want that on your conscience!
- When you see me with my child, you are only seeing a very small piece of the puzzle. Don’t judge when you don’t know the full story of what is going on and how I am handling it.
- We are always 2nd guessing decisions, and ourselves, and have probably given ourselves a complex in the process.
- If our child has physical and/or behavioral challenges, they will break us repeatedly…literally.
- We age in dog years (7 years to your 1) and will hate you for it.
- Include our child, even if you know we won’t accept the invitation. Invite us to playdates and birthday parties. Don’t just invite our neurotypical children. Our neurodiverse kids have feelings too and know when they are being excluded. Don’t make us deal with their heartbreak too.
- Give gifts to our child with a disability if you give gifts to the rest of us. “I didn’t know what to get little Tommy” is no excuse. Do some damn research!
- Make us laugh. This really should be item #1.
- We secretly compare our kids to yours and try to make them ‘normal’, and when we can’t, we try to pretend that’s ok.
- If you see me in a grocery store pushing a wheelchair, pulling a shopping cart, and chasing a toddler, don’t stop me to offer help. That is demeaning and comes across that you think I am not capable. Instead, stop me to say what beautiful kids I have.
- What we disability parents need: caffeine, sleep, and someone to listen to us that speaks adult human.
- We need chocolate; lots and lots of chocolate. Think Godiva.
- We hate being called ‘special needs parents’; our needs aren’t special and neither are our kids. We want inclusion, love, and acceptance just like everyone else.
- We will change, just accept it. I went from the female version of Pauly Shore to Gunny R. Lee Ermey. If you are old enough to get that reference, then you know how unnatural a transition that is!
- No, our kids will not ‘get over it’ or ‘grow out of it’ or whatever. Just stop.
- If there was a miraculous treatment for our kids, don’t you think we would have done it already? We have done more research into our kids’ diagnosis than 16 NASA scientists could do in a year.
- Sometimes, we have to travel out of state to get our kids the treatment and diagnosis they need. All kinds of help are appreciated then; freezer meals for my family at home, Starbucks gift cards, UberEATS, or even cash is helpful to me.
- Our ultimate fantasy involves someone with bulging muscles, blonde hair tied back with a bandana while sweat trickles down… her face as she scrubs our kitchen floor. Unsure of how to help? Get us a couple of hours from a house cleaning service – Really. Do it. Now.
- And yes, that is really the extent of our fantasy life. Reference Items # 4 & 7.
- If you are in a store and happen to pick up a ‘little something’ that you think my disabled child will like, I WILL cry. Parents with disabled children often suffer from emotional deregulation. But be careful; it can swing the other way too. And quickly.
- PTSD or CTSD (Chronic Traumatic Stress Disorder – because our trauma never goes away) is common in people raising disabled children. Don’t avoid that conversation with me. Find me resources because I don’t have time to look that shit up. Offer to help me find a professional to talk to if it looks like I need it.
- One of the biggest things to know about us moms is that we feel that what is wrong with our kids, is our fault. After all, we made these kids, we grew these kids inside ourselves, so that must mean that something is wrong with us, and we will spend the rest of our lives trying to make it up to them the best way we can. By giving them every ounce of our love, strength, and advocacy that we can. We WILL NOT FAIL them in THIS.
- We need coffee…and sleep… Did I mention coffee? Or tea? Really anything with lots of caffeine, I need it to get through this day.
- If you really want to be my best friend, make me get dressed, throw my hair in a messy bun and take me to the hairdresser for a cut and color. I love you!! Bonus points if we stop for coffee on the way. I may even feel human afterwards and there is the chance that you may have to physically drag me to go back home.
- If I start talking about bowel movements and am getting into really graphic details like texture and taste (DON’T ASK!), kindly redirect me to more appropriate topics of conversation. My social skills are rusty and I am used to talking to doctors.
The Last Thing You Need to Know
Yes, I have poked a little bit of fun at serious topics but I hope you realize that everything in here is someone’s truth. Everyone on this planet has their own journey and their own story to tell, that’s what makes us unique. Deep down, we all have the same basic needs, which are love, acceptance, and companionship from our fellow man. What should matter is our abilities, not to be pigeon-holed by our disabilities.
Don’t be afraid to step out of your comfort zone and let us know that you see the wonderful children that we have brought forth into this world. I find both my neurotypical and neurodiverse sons absolutely amazing but in their own unique ways. My oldest, my Intellectually and Developmentally Disabled son has had over 24 surgeries, is currently on a ventilator, and yet every time I give him a kiss on the head or a big popping high five, he laughs. Not a little laugh, but one of those big belly laughs that I wish I was still capable of.
I feel sorry for everyone that hasn’t gotten to know him, and that includes family because they never get to hear the sound of pure joy that comes out of my non-verbal son.
Here is your challenge
Make a difference in the life of a family that experiences a disability in your community. If you see them in a coffee shop, buy them a coffee, let your kids play with theirs, even just sit down and have an idle conversation with them while you are at the park. I thank you on their behalf because you just made their day.
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Momma Bear’s Guide: Interviewing Caregivers
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