‘If your son was less disabled, we could be of service to him.’: Mom shares ‘horrendous email’ received when seeking support for son with autism

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“This morning I drank my coffee and bit my tongue, filled a little too full with rage.

With two sons on the spectrum, support is something my family searches endlessly for.

The email was long, way longer than expected, and detailed how only if our child would be less disabled during the current state of the world, we would get respite for my son Avery:

Our current policy has changed for all clients we serve and see in public and also their home setting.

If your son was less severely disabled, we could be of service to him and your family.

If your son becomes available to be less dependent on our staff for feeding, bathing, and basic care we would love to be able to help.

Confused is how I feel right now, with a side of anger in my heart.

The current state the world is becoming the new excuse as to why families like mine don’t get the help we need.

Why does our son get to go without?

Well, apparently he is too disabled according to the horrendous email we received when seeking support.

And that is the world we live in now.

How incredibly sad to be living like this.

I am a mother of three children and two of my children have intense severe needs.

Those two children of ours with severe needs are both diagnosed on the autism spectrum.

One son is nonverbal and needs guidance along with continued help bathing and eating meals.

He is the one according to a respite program who ‘is too disabled to be helped and supported.’

Until this morning, I had no idea that this is even a thing.

While our other son who is much younger needs support with socializing and understanding the world around him safely, our other son’s struggles are affecting our entire family emotionally and mentally. Daily.

I came to the realization that this life was not meant to be easy on us, ever, which sometimes makes loving motherhood challenging at times.

three kids running towards mom
Courtesy of Katie Emde

Is this forever?

Honestly, if it is what forever looks like, someone just kidnap me away.

This life of getting punched in the face and my hair pulled.

Kicked in the jaw, getting bitten multiple times.

Getting spit on, my head bashed, and my eyes almost taken out.

A new hole getting put in my walls every day throughout our house.

Our daughter is so afraid that at any moment her brother will hurt her when he is struggling with his emotions.

Like, just come kidnap me away, because I don’t know if I have it in me to just up and leave.

Parenting is not supposed to be like this.

Motherhood is not supposed to be like this.

Our youngest son needs help and we don’t know how to get it for him.

Show me a parenting book that says violence and extreme aggression are things that might happen while raising your child.

The thing is, there is no book. There is no guide to how you survive a child who is this aggressive.

The thing is, there is no available pamphlet I can check out that might make our life a little safer.

Our youngest son has caused a ripple effect of sadness in our life. Why?

We don’t know how to help him.

We don’t know how to keep him safe from himself.

We have no clue how to protect ourselves from him.

We have no clue about what we are doing.

And we are all alone.

Literally, our only option during the current state the world is to send him away.

Let that sink in for just a second.

We are struggling so immensely with our 5-year-old son that we need to send him away because we don’t know what else to do.

I don’t care what the moon cycle is or if it is retrograde.

Or someone’s suggestion on us trying more gluten-free products.

I don’t care about new vitamins or supplements now available.

I don’t care what suggestions you have, because at the end of the day, you don’t live our life.

And right now, I have reached the point of feeling like we have failed our sons, and there is nothing more we can do.

The help.

The support.

The guidance.

All of which will show us that love matters and is still somewhere to be found seems distant.

I know we are not alone in what we are experiencing.

The feelings that come with not knowing how to help your child who is struggling is so heavy.

But hopefully, this story of ours is a piece of comfort to you.

You are not alone in this world when it comes to raising a loved one with complex needs.

You are seen, and I am sure that is all you’ve ever wanted.

To be seen and also heard

Parenting is not supposed to be like this.

Motherhood is not supposed to be like this.

This morning I drank my coffee and bit my tongue, filled a little too full with rage.”

little boy sitting in a chair with his mask on
Courtesy of Katie Emde

This story was submitted to Love What Matters by Katie Emde of Journey for Avery. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories from Katie here:

‘Bleach can cure anything, Katie. Don’t you want to cure your son?’ What I thought was a ‘moms tea party’ turned into a dark autism bleach cult.’: Mom stresses ‘beauty of autism’ after cult discovery

‘All the progress he made is gone. We’re back to square one.’: Mom to son with nonverbal autism discusses impact of COVID-19

‘My high was our son’s milestones, your high has was a piercing hot needle into a vein. I couldn’t save you.’: Special needs mom pens letter to ex-husband battling addiction

‘If I put him up for adoption, will he have a better chance at life than the one I can give?’: Mom thanks nurse who talked her ‘off the ledge’ into raising son

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