ADHD, children, illness, myths

How You Should Respond to Special Needs Families

I couldn’t decide what to call this post: “Stop Shaming and Blaming Special Needs Families”? “She Said Coddling Causes Special Needs; This Was My Reply”? “How Not to Respond to Special Needs Families”? I settled on “How You Should Respond to Special Needs Families” after quite a bit of deliberation. I feel very strongly about this topic. Regardless of what we call this post, the fact remains that parents are being blamed for their children’s medical conditions.

This needs to stop.

{{FYI: This article contains snark. Consider yourself warned.}}

Last week, I found a comment on my Facebook page that was something like this:

“Children wouldn’t have special needs if you didn’t coddle them, and treat them like babies, and if you made them toughen up.”

Oh, really? That’s how it works, huh?

Okay then, let’s define what “special needs child” means –because that comment leads me to believe that maybe she really doesn’t know what it is.

“In the United States, ‘special needs’ is a term used in clinical diagnostic and functional development to describe individuals who require assistance for disabilities that may be medical, mental, or psychological.” (from Wikipedia, italics are mine.)

According to the commenter, I guess that means that my friend’s daughter who has Type 1 Diabetes is only sick because she’s weak? The fact that she’s been poking herself to check her own blood sugar levels since she was three-and-a-half years old is not a sign of her strength and fortitude? I guess this child has a life-threatening autoimmune disease because she’s been hugged and held too often?

I guess that means my niece who has bipolar would automatically stop having manic and depressive episodes and suddenly start understanding the consequences of her actions if we were just harsh enough in our treatment of her? If we just forced her to be normal? Maybe if we pushed her around a bit? Or chased her with a baseball bat? Maybe if we locked her in a closet? That would cure it?

I guess that means that my friend’s son who is nonverbal with autism would suddenly start speaking if we stopped coddling him and treating him like a baby? He’s only struggling because we aren’t being hard enough on him? Maybe a little cruelty would cure him? Maybe we should scream at him and intimidate him into talking? You think that would work?

My son with ADHD, an anxiety disorder, and learning disabilities –maybe I could just beat the brain development problems, panic attacks, and handwriting struggles out of him, then? Pshaw. Why should we make sure children feel safe, secure, and loved by their families anyway? When he has pain in his hands from handwriting, maybe I should just tell him that if he doesn’t do his assignments I’ll really give him something to cry about? I’m sure that a good beating will solve his learning disabilities? And make his anxiety so much better too, right? You think so?

I guess my friend whose child has severe, life-threatening allergies would just keep breathing if we force fed her the thing she’s allergic to? After all, isn’t she just being weak? And we are just allowing the allergic reactions to happen by treating her like a baby? I’m sure she just made up the anaphylaxis –and that two-week hospitalization was the child manipulating the hospital staff? There’s no possibility that the medical doctors actually know what they’re talking about, right?

Here’s the reality:

Parents don’t willy-nilly decide their child is a little snowflake and label them “special needs” for the fun of it. No one does this for the kicks. Professionals —medical, mental health, or developmental professionals— they diagnose these conditions.

They diagnose these conditions because they’re REAL and because the child has an actual, factual, legitimate medical need that most other children don’t have.

We get a diagnosis to help our children. It is anything but fun and games. Don’t you think that if these conditions could be fixed with a little “tough love” we would have done that already?

Having a special needs child is hard, far harder than most parents could imagine. We try everything we can think of, often grasping at straws and faint hope, existing on a wing and prayer trying to find answers for our kids. No parent wants their child to be sick or to have an autoimmune disease or a mental health disorder or developmental disorder or a learning disability. Like every parent, we want healthy children, and often we mourn our children’s diagnosis and the struggles we know that they will face –not the least of which is cruel judgments from small-minded people.

We get the diagnoses because we are trying to help our struggling and hurting children.

Parents should never EVER be shamed for seeking medical treatment for their children’s legitimate medical conditions.

And, sorry, but no other person gets to decide what is a legitimate condition and what is not.

And, you know, reading an article online explaining some journalist’s opinion about a medical condition does not make you an expert in that condition.

We are experts in our children’s struggles because we live with it and study it every day as we try to help and care for them.

If you can’t be supportive, keep your mouth shut.

Our lives are stressful enough without the ongoing drama caused by people who have no idea what they’re even talking about.

These children are not being coddled or given crutches. We are treating children with legitimate medical conditions. We are guiding and loving them with dignity, kindness, and grace. The same way any human should be treated. We are choosing to believe them and to help them where they struggle –as any decent parent would, as any decent person would.

Shame on those who try to would belittle, shame, and bully parents into not getting the best medical care they possibly can for their child!

Shame on those who would try to make parents feel like failures because their children have medical conditions!

Shame on those who would disparage a parent for looking out for the best interest of their child!

A child with a broken leg needs a crutch. If he is denied a crutch when his leg is broken, that’s abuse. That’s traumatizing. That’s wrong.

The same is true of ANY child with ANY medical condition.

Unless you have a special needs child, you do not know the immense pain and struggle these families face. The parents learn to be hypervigilant –always watching for their child’s medical needs. Often, the parents develop PTSD from the ongoing stress of caring for these children. These kids fight harder every day to exist, and be, and function, and go on than you could imagine in your wildest dreams.

All the while, these parents are fighting against the cultural biases that their children’s medical needs are illegitimate.

They hear accusations that most people would never dream of saying to a parent of a child with leukemia, for example, because that’s generally thought of as a “real” diagnosis.

Frankly, the level of prejudice against special needs families in our culture never ceases to amaze me. It is getting better with time, but we have a long way to go toward cultural acceptance of children and families who do not fit nicely into a box.

Instead of criticizing, blaming, and belittling, you should be admiring these families.

Admire the child who doesn’t give up when faced with far harder circumstances than most adults will ever face.

Admire the mother who keeps on fighting for an accurate diagnosis and treatment for her struggling child and refuses to give up.

Admire the father who endures a manic episode or autistic meltdown with grace and calmness while keeping the child he loves more than his own life safe.

Admire the parents of a violent child with multiple mental health disorders who keep loving the child through the violence, through the struggles, who fight for that child’s health and mental health even if it means the hard decision of institutionalization.

Admire the siblings who sometimes get the short end of the stick because mom and dad put so much energy into their struggling sibling –but they keep loving their sibling anyway.

Admire the families who get up every day and fight the same battle they fought yesterday with the same tools that may well have not worked yesterday, but they still keep fighting.

Admire the adults with these diagnoses who lived through a generation that blamed these legitimate health conditions on the person suffering …and yet they came out the other side. They didn’t commit suicide when they felt abandoned by the world. They didn’t give up –or at least they didn’t give up forever. They turned around and decided that no other person should ever feel like they felt and made it their life’s goal that others shouldn’t suffer in silence as they did.

To the original poster: Why would you choose to turn a blind eye to the needs and suffering of those around you? If you choose to ignore, attack, and marginalize these amazing, strong, brave, resilient, noble, victorious, fighting special needs families all around you, maybe you’re the one who truly needs a doctor.

I suggest a psychiatrist.

Because mentally healthy and emotionally stable people don’t behave like that.

I pity you because you have missed the beauty that these special needs families bring to the world.

And, I’m sorry for whatever happened to you that makes you feel like it is okay to spread toxicity and hate when you could spread kindness and joy.

At the end of the day, let’s try to leave the world a little better than we found it. A little kindness could make a huge difference in our world.

A little kindness could make an already-horrible-day a little more bearable for a family struggling to keep their head above water in a world that doesn’t understand or appreciate their day-to-day battle.

To you who are wondering how best to respond to families of special needs children: listen to them, believe them, support and encourage them if you can.

And, if you don’t have anything nice to say, don’t say anything at all.

To you who fight this battle every day for your children:

I see you.

I understand.

You are not alone.

Blessings,

Sarah Forbes

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