To the moms of toddlers with special needs,
I realize we don’t know each other, but I have a feeling I know exactly how you feel right now. I know because, like you, one of my children received a disability diagnosis as a toddler.
Raising a toddler isn’t easy – period. However, I do not think that many people realize just how difficult it is to raise a toddler with a disability or neurodivergence. But I know. I see you.
I know about all the nights you spent awake, searching for answers to help your family. I know about the countless appointments you have been to for screenings, additional testing, and observation. I know all about specialists like physical therapists, occupational therapists, speech-language pathologists, and applied behavior analysis (ABA) therapists. I know what all of these things mean for your family, and most importantly, for you.
I also know about all the back and forth that happens with insurance to approve these necessary tests and therapy sessions. I know about all the out-of-pocket expenses that come with your child’s care. I hear you on the phone. I see you filling out paperwork. I feel you advocating hard for your child day in and day out. And I know how exhausting it all is.
Looking back, I wish I’d had someone who understood what I was going through at the time. I wish that at least one person in my life could have offered me advice, comforted me, or just listened to me complain without rolling their eyes or offering some sort of empty compliment about how amazing I was.
So, I’ll spare you all the inspiration-porn or countless pats on the back just for doing what you know you need to do as a mom because, let’s be real, we both know it’s not necessary or helpful. Instead, I want to offer you some practical words from someone who is now a bit further down the road in this journey with a child who, despite her diagnoses, is thriving to the best of her abilities.
First and foremost, I just want to tell you to keep doing what you’re doing. All the research, the battles with insurance, the documentation of concerns, the advocating for your child – it matters more than you realize. So, don’t give up and throw in the towel. Just keep doing what you’re doing because it will help your child. Even if you don’t have all the answers yet, or you don’t think anyone is listening… just keep doing what you’re doing for your child. The early interventions and other things you’re pursuing absolutely will make a difference, trust me.
However, don’t be afraid to take time for yourself, too. Parenting a toddler with a disability or health condition is a full-time job in and of itself, and it’s even harder if this isn’t your only child. You deserve a break from time to time just like any other mom, so make sure you do it. You can’t pour from an empty cup, and you definitely need to put your oxygen mask on before you can help your child with theirs – and parenting a child with a rare condition is no different.
If you don’t have someone who can help you out, then find other ways to take time for yourself when you can. But, one way or another, make time to recharge because you definitely need it.
When it comes to how you treat and view your child, do what comes naturally to you. I think there’s such pressure on parents to tell their kids they can do anything and not let their disability “get in the way.” But the fact is that every child isn’t the same, and that’s okay too. Just find solutions that make sense for your family, and remember that your child’s best efforts are more than enough.
There will be days when you doubt your ability to parent. There will also be days when you feel defeated and want to give up. These feelings are normal, and you are not a bad mom for feeling that way. This stuff is tough work, and yet here you are kicking butt and doing the hard things anyway. That says something about you whether you realize it or not.
No matter what anyone says or how you feel on any given day, remember this: Nothing about your child’s condition is your fault. You are doing the absolute best you can, and that’s more than enough. Just hang in there and keep doing what you’re doing – you got this, Mama!
A fellow mom of a child with a disability