When You're Parenting A Child With Special Needs, You Are Always 'On'

I’m A Mom Of A Child With Special Needs….And I’m So Tired

January 12, 2021 Updated February 19, 2021

African American Mother Playing with Son with Cerebral Palsy,Bremerton,Washington,United States,USA
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I’m a mom of a child with special needs, and I’m exhausted. This isn’t the kind of exhaustion that will go away with a nap. The exhaustion is relentless, and it comes from not only advocating and caring for my child, but dealing with everyone who offers me judgement and advice on how to best help my child. This is on top of working, raising other children, and the other responsibilities that come with real life.

When parenting a child with special needs, there are no vacation days of off-switches. Raising my child, who has half-a-dozen diagnoses, requires constant attention, awareness, energy, flexibility, dedication, and patience. As my child gets older and their needs evolve, I must also evolve. When I climb into bed at night, I both thank God that I get to be my child’s mother, but I also recognize the epic depletion.

I’m open about my exhaustion, not because I want anyone to feel sorry for me, but because concealing it is so much work. There’s freedom in speaking your parental truth. The problem is that this comes with a cost. Even though I consider my inner circle to be my safety net, there are those who choose to respond inappropriately. It’s disheartening and leads to further frustration.

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I can’t tell you the number of times someone has responded to my exhaustion with an off-handed comment about how I need to practice more self-care. As if getting my nails done, taking a hot bath, getting a facial or massage, or going on a shopping spree will magically eradicate the demands that come with being a parent of a child with special needs.

I’m also met with a “just take a vacation” comment. You do know vacations cost a ton of money, and require time-to-spare, right? If I’m not caring for my child, who will be? I’m pretty sure it won’t be the person who flippantly tells me to just chill out with a fruity drink, poolside, in a tropical location a few thousand miles from home.

Which leads me to the fact that finding childcare for a kiddo with special needs is extremely difficult. We have to find someone we can trust, someone who will follow our carefully laid out rules and expectations, and who also has the creativity and knowledge to adapt appropriately to our child when needed. Honestly, we hardly know what to do much of the time, so it’s next-to-impossible to find someone to come in and do the same. This person also has to have the ability to care for multiple kids at once.

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My child needs a lot more supervision than another child of their same age. This is not only to make sure that interactions are going well, but also to keep my child safe. When a child lacks impulse-control, executive functioning skills, and is also hyperactive, the combination can be dangerous. I need someone who has the ability to predict what my child will do—before my child does it. See what I mean? It’s a tall order.

Parents of kids with special needs aren’t only working every single moment of every single day for our children, but we also to fight stereotypes and combat judgements. We’ve been asked so many questions along the lines of these. Why don’t we just discipline our kids more or better? Have we tried essential oils, supplements, chiropractic care, prescription medications, therapy, a special diet? Perhaps we just need to put out more positive vibes into the universe or pray harder, asking God to heal our children?

Trust me, if we could just whisper a prayer, rub a little oil on our kid’s wrist, or avoid sugary foods forever, resulting in our child being healed, we would do it in a heartbeat. But that’s not how special needs works. And frankly, defending our parenting to all the know-it-alls out there is only further exhausting us. We don’t need advice, pity, or criticism. We just need support. If you can’t offer that, please step aside.

I absolutely don’t reply to every bit of unsolicited advice or ignorant (and unwanted) feedback. However, I’d be lying if I didn’t tell you that these little digs at my ability to parent my child begin to pile up, to the point of toppling over. I have bad days where I wonder if maybe the critics are right. Maybe I’m not doing a good job. Maybe I’m not good enough. My child deserves the best, not a burned-out parent who cries in the shower and ponders if she’s doing the right things.

I spend a lot of time advocating for my child, whether it simply be my presence (don’t mess with my kid), in school meetings, or in social situations. While other moms can pair off and chat about baseball practice and summer camp, I’m on, keeping an eye on my child while trying not to smother them. It’s always a balance. Letting my child make mistakes, but also have successes, while I stand nearby.

The reality is, I’m always on. Even after my kiddo is tucked into bed and is (finally) sound asleep, I am reading books and articles about how to best meet their needs. I’m researching our latest challenge, special education laws, and emerging findings on new therapies.

Like all moms, I want the very best for my child. I’ve been blessed with the gift of being their mother, and I’m not going to ever, ever go down without a fight. But if I’m honest, the constant battles are exhausting. I need a lot more “go, Mama” cheers and a lot less of the outside-looking-in criticism from those who will never understand the beauty and the pain that comes with always being ready.