The Truth About Mothering a Child with Exceptional Needs | Giftie Etcetera: The Truth About Mothering a Child with Exceptional Needs

Thursday, May 5, 2016

The Truth About Mothering a Child with Exceptional Needs

I've drafted the first line of this post over ten times. It started as a celebration of mothers who raise kids with exceptional needs.

But that wasn't enough.


It morphed into a cutesy illustration of what moms of "normal" children can expect - footprint art, tissue paper flowers, or breakfast made from cereal and spilled milk - versus what moms of kiddos with special needs can expect.

But if a child can't remove his corrective foot braces, has inadequate fine motor skills, or had seizures pretty much every day this week, moms already know they won't be getting that traditional stuff. They don't need me to tell them (or you) that.


I owe it to the mom who stood by me in the special park (the one with a wheelchair swing and an adult-sized harness swing) - watching our two "probably have autism but doctors are nervous to label them" kids to make sure they were at least not physically mean to each other - to tell the truth.


planner, planner spread, special needs, exceptional needs



My Loyal Readers know that I speak better - clearer and more rationally - when I speak in Plannerd. So let's talk about the planner page of a mom whose kid has special needs.

Her tasks are likely not about her.


My task list today?

Apply for art camp for the special needs child.

Check summer schedule for occupational therapy.

Check insurance approval for group therapy.

Swing by the pharmacy (third time this week).

Call the psychiatrist back (third time this week...see a theme?).

Not on my task list? About a million things that I want to do, like finishing my book about day planners or reading a novel. I've love to check out the Supreme Court cases likely to be decided soon. But no. None of that made my list. There simply wasn't time.

Yes, it is important that every mom take care of her needs. But when you are struggling to keep your kid out of the hospital, you do what you must first.


She is probably unemployed or underemployed.


The moment a mom gets that diagnosis, in hand, she says, "we'll keep things as normal as possible."

Maybe she will. 


But peek at my schedule. Today I was out of the house with my kid from 9:30 - 12:30 (pharmacy, occupational therapy, and speech therapy), 3:45 - 5:30 (picking up other kid from piano practice, with the tired, seizing epilepsy kid in the car because dad is working overtime), and 6:10 - 6:40 p.m. (bringing kid to piano practice).

If you add in making breakfast, homeschooling my special needs kid, and sorting the pills into weekly containers, the day is gone. I'll work from 9 - 10 p.m. if I am lucky.

I have an incredibly supportive boss who is always conscious of my family coming first, even though I try to make sure my work product is even better than everyone else's.

Doesn't matter.

If the special needs are serious at all, mom will need to make doctors' appointments, attend therapies, do wheelchair/glasses/braces fittings, and get bloodwork done every few weeks. Those things are mostly available during the workday.

So who works?

Maybe she does, and grandparents struggle to keep up with the appointments. Her employer probably thinks mom misses too much work.

If she is lucky, like me, she is a lawyer with a part-time, at-home gig, or a nurse who can pick up a night shift or two a week and pretend sleep is not necessary.

Her partner or spouse works, probably. Honestly, the partner can end up with an unfair amount of stress to keep a job because of insurance coverage or because he can accept overtime to cover co-pays.


But she often doesn't work, even at great financial strain to the family, because caring for a child with exceptional needs is more than a full-time job.

Her menu plan must be completely flexible.


I have a menu plan. See it? Right there in my planner?

That's my plan. My kid has no appetite from his meds, so he eats what he can when he can.

Hospital visits or longer-than-expected doctors' appointments mean drive-thrus.

One mom with a child fed via a tube noted to me that she can go to Disney only when the meal plan is free, or she has to pay $100s for him to not eat, since he qualifies as an adult. 


She worries about her other kids.


I have no time, but still drove the other kid to piano practice. I feel guilty for him. This year, he has to change schools so his brother can get services. He is so sad.

Moms choose to have children. Siblings don't.


Where she lives matters.


School districts matter.

Available therapies matter.

Doctors/hospitals nearby matter.


So I live in the suburbs and spend at least 2 extra hours per day on the road, just to maximize (or even get, in some cases) the resources needed.

More expensive neighborhood? You betcha, if it is the only way to get a para-professional for your kid.

Smaller house? More crime in the area? Too bad, if it gets you in the school district that cares.


Her partner, no matter how amazing, doesn't quite get it.


My husband is not doing any of these things in my planner. You see, he works all the time for insurance and benefits.

He didn't see the seizure today. He didn't call the psychiatrist, who is worried enough to contact the neurologist. He doesn't really get why the kid is sleeping by 6:30 and that, when I say he did not eat, I truly mean that he did not eat ANYTHING.


Something even worse?

In a marriage of equals, mom often has to "report" to dad on all of it to keep him even minimally informed. Then, dad has to "obey" mom when dealing with the issues because he does not know what is currently working.

Spouses should not have to answer to one another that way. But it is the reality and it cuts both ways.


Finally, in a household with a special needs kid, mom and dad are not getting enough quality time together. It's just not happening.

People think she is rude when she ignores them, her child, and politeness to answer the cell phone.


Today, as my planner notes show, I spoke to social therapy, psychiatry, speech therapy, and neurology (all 2 to 5 calls back and forth plus notes).

Damn right I'll stop the grocery checkout line to answer.

I will answer at the movies (though I will try to attend the "exceptionalities" showing and walk out when the phone vibrates). I will answer my phone during lunch at a deli. And I will interrupt you mid-sentence, hand in the air to stop your talking, so I can take the doctor's call.

For my kid, it's life or death. It's the difference between attending school in the fall or another wasted year at home.

Moms know this behavior is rude. We know society cannot function if everyone is tuned into smart phones instead of each other.

But doctors get three minutes to call back. We WILL answer that call.


She knows all the medical terminology - whether she has a high school degree or not.


I've tested this theory time and time again.

When a mom has a kid with a disability, that mom becomes an expert.

Her high school algebra grade? Doesn't matter.

She no longer thinks she should support the school. She thinks the school should support her.


I meet so many moms who are homeschooling kids with physical, mental, and emotional disabilities.

At first, they all want to support the teacher. They get it when people say schools are "too" - too violent, too disorganized, too lenient, too whatever.

Perspective changes in each new IEP meeting. Perspective changes when it is your kid.

Moms who want to be incredibly supportive of teachers become advocates instead.

Few of us enjoy it. It breaks our hearts. We feel, better than most, the stress that teachers face.

We do it anyway.


What Can You Do?


This Mother's Day, offer to shadow and train for caretaking so mom and dad can have a real a night out every now and then. Force her to treat herself - coffee, bookstores, ice cream.

Tell her that you read this - send it to her - and that you understand a bit more.

And to that mom who stood there next to me today, under the shade of the specially-modified playground, trying not to cry... you are not alone.

I'm right there with you.

We both know we CAN do this because we already HAVE. And now your friends and family know just WHAT you do.

You are supermom. 


Etcetera.


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5 comments:

Erin said...

My four year old has had a feeding tube since birth.He eats a lot by mouth. Not enough to make our GI happy. I can't begin to explain what a world of difference eating by mouth will mean in the Kindergarten lunch room. Our doctor doesn't seem to care. I wanted to punch my husband when he agreed that maybe we should prioritize weight gain over oral eating. It's so tricky and stressful. My son doesn't even have the muscle control to chew. Everything he eats has to be pureed. I can't imagine going out to eat as a family or even on vacation. We have to bring tons of equipment with us every time we go to someone's house for dinner. Any weekend plans have to be made around my son's feeding schedual.
I feel your pain.

butterflye said...

Brilliantly written and such an eye opener to those of us who don't share in such struggles. My heart goes out to you and your family.

Mrs. Brittney Bogart said...

Hugs my friend. It's very hard, and every story is completely different. I'm facing this as well I some ways, but perhaps not quite as severe. It still hurts. I also faced it with my mom when she was still with us and had very special needs due to her health. I'm so glad you have a voice that speaks out. I wish I was closer to lend a hand. I am always available to lend an ear. Miss and love you!

Jaime Barfield said...

This is a wonderful education for mom's who don't understand the struggle. You should be proud of your status as supermom. blessings to you and yours.

Tehomet said...

Illuminating.

Thank you for posting.