You Might Think I'm A Terrible Mother

And some days I'd agree with you.

Photo by Bekah Russom on Unsplash

People seem to be divided when it comes to high need children. Some folks insist that unless a child has special needs due to a condition like autism or cerebral palsy, a high need child is pure parenting mythology.

Others will tell you that they didn't believe in high need babies and kids until they had one for themselves, and usually after one or two "easy babies."

If you've ever read a Dr. Sears parenting book, you might recall him writing about how neither her nor his wife Martha believed in high needs babies who naturally became high needs children... until they had one too.

My case has been interesting because I only have one child, so I can't compare my daughter's temperament or needs with another. Even so, I've always had an inkling that this was a high needs kid.

Always as in, since my difficult pregnancy.

This month, my daughter turned 5, and I've been reminded that I'm not dealing with an ordinary child. When I was induced 5 weeks early due to severe preeclampsia, she was immediately sent to the NICU for multiple issues and the doctors told me she had "no muscle tone."

At the time, my daughter had more pressing matters including a strep B infection, so I didn't give much thought to her muscle tone. The treatment for preeclampsia is induction while the mother receives a magnesium sulfate drip, and I labored for 38 hours before delivery. So it seemed only natural that my daughter had too much magnesium in her system at birth, and that her muscles were "floppy."

Magnesium is a muscle relaxant.

But the doctors didn't explain to me that having no muscle tone wasn’t just a physical issue, but a neurological one. Not only that, but they also failed to mention that low muscle tone could be a life-long condition.

My adjustment to motherhood was difficult and being a single mom didn't help. I found myself repeatedly playing the role of that new mom who Googles too much to figure out what's going on with her child. Our first pediatrician wasn’t a fan of that. He and my daughter's dad would exchange exasperated looks, and that pediatrician told me to quit Googling my daughter's issues because she didn't have tongue tie as I suspected.

That doctor did a lot of damage. He told me that I was just a nervous new mom, and reinforced my daughter's dad's opinion that my judgment couldn't be trusted. Even I didn't trust my own judgment after a few appointments with that first pediatrician.

As a result, the first 2 years of my daughter's life were unnecessarily hard. She and I had to get through colic, GERD, painful and frequent breastfeeding, eating and speech regression, oral aversion, and more.

It took nearly 2 years for me to get the courage to bring up tongue tie with a kinder and gentler pediatrician. When I told him I didn't believe my daughter could comfortably move her tongue up and down, he examined her as she cried and told me not to doubt my instincts because he thought I'd hit the nail right on the head.

We were referred to a pediatric dentist who confirmed my daughter's tongue tie and performed a laser frenectomy in 2016. Her dad didn't understand how the first pediatrician could have been wrong, and he still had trouble taking me seriously when I said our daughter was high need.

Catching tongue tie early is important not only because the correction is just a quick snip in the doctor's office for infants (as opposed to laser surgery by a dentist for toddlers), but also because of a little thing called muscle memory. After her tongue tie surgery, my daughter required physical and speech therapy to help her finally speak like other kids her age and also eat with less oral aversion.

Through those six months of therapy, I learned that poor muscle tone was a neurological issue also known as hypotonia. And while her therapists ruled out autism, they explained that my daughter displayed rigid tendencies and that she had a form of sensory processing disorder.

It turns out that it's not uncommon for kids with hypotonia to also have sensory issues. Likewise, high need babies who become high need kids also commonly display rigidity and hypotonia along with those sensory issues.

In my daughter's case, she still has difficulty with soft foods and she seeks out physically "rough" stimulation. She wants to spin and jump non-stop and prefers strong hugs over gentle ones.

She also has a tendency to be extremely rigid about certain, seemingly random things--often in phases. When she was 2, her juice box straw had to be lined up just right with the picture on the box. And her stuffed animals had to be lined up to her liking too. She could easily spend more than 20 minutes rearranging her stuffies in bed.

At 4, she had an obsession with telling me about every single bump or perceived pain. She would often interrupt me every couple of minutes to tell me that she had bumped her knee or hand while playing with toys. That she'd hurt her tongue eating a cracker. Even if she was upstairs and that meant she had to constantly go up and down the stairs to inform me of every potential booboo, she'd do it.

For a long time, she was consumed with asking whether or not she was going to bleed.

Now that she's better about narrating even the slightest touch, she has a new obsession. Washing her hands. For the past couple of weeks, she's been increasingly concerned about having messy hands to the point of not wanting to eat, or refusing to use her hands to touch or pick anything up. She uses her arms instead.

Unfortunately, the hand washing has escalated to her wanting to wash her arms and face if she so much as touches a salty potato chip. And while I can typically use reason pretty well when talking to my daughter, I have been unable to convince her that her hands, arms, and face don't need constant washing. Or that she can pick up almost anything with her hands.

There have been an awful lot of tears and sopping wet bathroom floors as we try to get through this new phase, and I don't believe I can handle it by myself.

I'll have to get her into therapy again.

Sometimes, I actually forget about my daughter's rigidity and sensory issues. It's been pretty damn overwhelming and even startling lately to get the reminder that oh yes, my kid is high need and incredibly sensitive.

You'd think that as an overly sensitive and autistic person with sensory issues myself, I'd be good at handling all of this. But it's sometimes still too much for me.

Plus, I am filled with an enormous amount of guilt and insecurity about the way the world will perceive these issues. It's not lost on me that many people negatively judge a single mom for somehow raising poorly behaved or maladjusted children.

If my daughter makes a public scene (which she did do today at a restaurant when she insisted her hands weren't clean enough), will people think I've somehow done this to her myself?

Am I going to be known as that single mom who can't reel in her kid?

For what it's worth, I don't really think I'm a horrible mother. But that doesn't prevent guilt from saddling up to me anyway. The guilt is extreme, mostly because I know that so many of our coping mechanisms wouldn't fly with other families.

My daughter's always been a night owl who doesn't nap or sleep nearly as much as her peers, and she's always co-slept with me. Which means I've pretty much never had the downtime that other parents have with their kids who go to sleep earlier than the adults.

With all of her rigidity issues, I also decided to delay her entrance into kindergarten to give her an extra year without pressure, though I've told her that when she finally starts school, that would be a great time for her to sleep in her own bed.

Some people would have a field day with so many of my parenting choices, and offer plenty of advice about how my daughter is more ready than I know. Or how I should quit "babying" her.

But none of that advice is particularly helpful because they don't know the depth of my daughter's anxiety in relation to her sensory issues. They don't know how she simply will quit eating or talking when there is any issue. Or how she refuses to speak up for her needs at her dad's house despite my encouragement to talk to him.

I have to trust my instincts in all of this, but that isn't always easy to do.

It was easier when my daughter was 2 or 3 years old and always well-behaved in public. People complimented me on her good behavior and I told therm we'd worked real hard to get there. But everything became harder at age 4 when she finally began having public temper tantrums and quit responding well to reason.

Still... I have to trust my instincts with my daughter despite frequently finding myself at my wit's end. Because I'm pretty sure I’ll lose my mind if I simply act out of the fear of how others might see me.

And I don't think fear can serve my daughter well.

I have a high need child, and I believe I owe it to her to meet those needs as best as I can and in a positive way. But of course, the positive way isn't always clear.

And the guilt can be nearly too much to bear.