Day 12: My response to, “You should have financially planned for this.”

If you are a fellow autism parent, you have heard this before. The comments about how we need to stop complaining about how expensive our children are. 

That we should have known this before having them. 

To suck it up. 

Get another job.

Cut back on therapies. 

Do what we have to do.  

I want to tell those people to suck it. 

There is no way to financially plan for this life. 

Before I even tried to get pregnant, I toured daycare centers and got pricing information. We were looking at around $1,400 per month in daycare costs for the first year. $1,000 for the second and third. Then, it would steadily go down from there until Kindergarten. 

We knew what childcare would cost before we decided to have a child. 

It was doable. 

I originally planned on having three kids (before I had any).

Do you know what else I financially planned for? Not having back to back babies I couldn’t afford. 

We knew we couldn’t swing $2k per month in childcare costs and support my stepson on top of that. So we waited. We figured when Ally was four we could try again since she would be in Kindergarten by the time the next child would need to go to daycare. 

While my husband and I are in no way financial experts, we knew this much. 

When I replaced my previous vehicle, I even got an SUV I could fit two car seats and a teenager into the back of. But you know what happened? Our daughter was diagnosed at three and our plans changed. We are most likely never having another child. 

With daycare off the table, the costs of paying babysitters and nannies for one child makes it impossible to consider having two. And how could we afford another one if they have ASD too?

If that’s not financial planning (and also emotionally devastating) I don’t know what is. 

Raising a child with Autism, ADHD or any kind of disability is financially crippling. 

And I’m saying this as someone who was considered “upper middle class” in terms of household income before I left my full-time job. 

We were struggling with an income that should be able to support several children. 

And let me tell you—I don’t care how much money you have or how much you make. You will figure out a way to get your child what they need. When you see them making strides, you are not going to cut their therapy. I was working three jobs at one point to make as much money as I could. And I’m someone who had a decent full-time job and a Master’s degree. 

But it still wasn’t enough and I’m not alone. 

According to a study conducted by Harvard Business School, 1 in 3 employees with caregiver responsibilities must leave their job because they are not getting enough support in the workplace.


Also, According to Autism Speaks, “On average, autism costs an estimated $60,000 a year through childhood, with the bulk of the costs in special services and lost wages related to increased demands on one or both parents.”


In addition, “Mothers of children with ASD, who tend to serve as the child’s case manager and advocate, are less likely to work outside the home. On average, they work fewer hours per week and earn 56 percent less than mothers of children with no health limitations and 35 percent less than mothers of children with other disabilities or disorders.”

And so here I am, once again, in this conundrum, if there is no support in place for parents and families to work—how the heck are we supposed to afford this?

How can you financially plan to not make any money and support a child who costs significantly more than their average peer?

I live in New Jersey. 

There are no Medicaid waivers, programs, or financial assistance for families who are not living in poverty. Average families like mine are working their asses off.

No tax credits. 

We can’t even waive the 10% penalty for dipping into our pensions and 401k funds because it only covers our own disability as if we could choose not to care for our dependents. 

Nothing. 

While we do have a legal mandate for ABA being covered by insurance, we still have to pay for it. If you have a job and can afford to. 

We have the highest property taxes in the nation and yet our schools and state programs provide nothing to families like mine. 

I’m not asking for handouts. That is not who I am. I want to work and am more than qualified to do a lot.

I’m not giving up. 

I made it 6 months without working full-time and did as much adjunct teaching at the local colleges as I could while my child was at her part-time public preschool program. 

So while I have lots of outsiders throwing stones at us about how we didn’t financially plan properly, I assume that you have a disposable $60,000 ready to go in case your child gets diagnosed. 

What you lack to understand is that having a child with ASD puts us at an extreme economic disadvantage. That is the real issue here. 

 Reference article:

https://www.huffpost.com/entry/caregivers-caregiving-quit-jobs_n_5c3e16c6e4b01c93e00e1843

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