When Things Are Not Easy: the Hidden Cost of Raising a Child With Special Needs

Recently, a close friend shared a staggering statistic with me- on average, autism costs about $60,000 per year.  This of course, is an average, and when I saw the statistic, I felt sad and lucky at the same time.  No, I have not added up our costs, nor will I ever, but I know that our family personally does not incur $60,000 worth of extra cost for Marshall each year.  But if I don’t shy away from the facts, I can tell you that raising a child with special needs has a lot of hidden costs. 

I’ve been avoiding this post for awhile and, like most things I’m supposed to do, the nagging feeling to act has not gone away, no matter how much I’ve busied myself or made excuses.  My hesitations are two-fold: the first is that I hate complaining when I know there is so much to be thankful for each and every day.  The second is that this is a hard topic to face head on.  It hurts.  It’s messy.  And I don’t care to dwell on it because wallowing in my sorrows won’t change a thing.

Wes and I are incredibly privileged in a lot of ways.  We both have college degrees, which were funded by a combination of academic scholarships and funding from our parents.  We both have supportive families and steady jobs.  Only one of our children has special needs.  Our basic needs are met on a daily basis without stress, turmoil, or extreme circumstances.  We do not fear for where our next meal will come from or worry about the stability of our housing.  In a lot of ways, we are stable and equipped to handle raising Marshall. 

So what’s the big deal? The recurring theme I’ve been faced with is this: raising a child with special needs not only impacts our bank account-- it narrows our options.  And I don’t mean that in a broad, overarching, big-picture sense—I mean that we are faced with this reality on a daily basis.  From clothing and food to entertainment and extra curricular activities, these truths are largely consistent.   

Let’s break down a timely example.  The first day of school is right around the corner.  Excitement is building.  School shopping is an activity I’ve grown up enjoying—the dawn of something new, the excitement of choosing new shoes, new clothes, a new lunch box, new folders and pencils and everything else on the list.  While Marshall’s supply list is identical to that of his kindergarten peers, underneath the surface lurk examples of expense and restriction. 

Let’s talk school shoes.  We can’t just choose whatever shoes Marshall likes, or which ones are on sale, or even the ones that seem most practical.  Marshall’s feet pronate (collapse in), and his ankles are relatively weak.  He has orthopedic insoles, which are difficult to fit into standard shoes.  While velcro shoes would be most beneficial in order for Marshall to be independent, it is very difficult to find a shoe that is wide enough and tall enough to accommodate the insole.  We worked closely with Marshall’s physical therapist to find the right shoe last spring, and we ended up being a half-top lightweight basketball shoe—it was wide enough and tall enough to house the orthopedic insole and provide the support Marshall needs.  However, he can no longer put his shoes on independently, and whatever adult is helping him has to be sure that his foot is situated correctly.  In fact, we ended up removing the orthopedic insoles in his current shoes because we found that if his foot wasn’t situated just right, his heel would push down on the top of the insole, which I assume was relatively uncomfortable (not that he ever complained) and compromised the integrity of the insole itself.  Thankfully, his current shoe seems to be supportive enough without the insoles that he is able to run, jump and climb comfortably.  The cost of the shoes (roughly $80) isn’t the part that discourages me the most—it’s the never-ending search to find the best shoe for Marshall with so many limiting factors. 

Shoes are just one example.  When thinking through Marshall’s lunchtime in kindergarten, I started planning ahead nearly a year ago.  I knew that we would need to pack Marshall’s lunch each day due to his restricted diet. I started researching the best possible lunch box for him, which ended up being a Planet Box.  The beauty of the Planet Box lunch box is that it’s all one piece, it keeps his foods separated, and it has a single latch for him to open and close.  We ended up purchasing the lunch box and a smaller snack size this past winter so that Marshall would have plenty of time to practice.  Since we already have to pack his food whenever we are out and about, we started using his lunchbox in those situations.  Additionally, I purchased the snack size so that he could start practicing the process on a daily basis at preschool in an environment away from home.  Again, the financial cost of the lunch boxes (about $100 for both, not including the insulated bag) is not the issue, as I’m sure we could have found a more cost-effective, plastic solution.  To me, the restrictive nature of having to plan ahead and think through every detail is the larger price we pay. 

In the near future, I don’t anticipate a day where we could wake up late, grab a quick breakfast and send Marshall to school with lunch money to buy a lunch at school.  One of the biggest costs we’ve taken on in parenting Marshall is choosing dietary intervention.  Again, I don’t want to complain or dwell here, because we aren’t technically forced to keep Marshall gluten-free, casein-free and artificial dye-free.  He will not be harmed physically by these foods in an obvious way.  He will not go into anaphylaxis, nor does he have a true allergy to any of these foods.  We have seen a first hand difference on many occasions, and have chosen this route because we believe whole-heartedly that it is in Marshall’s best interests.  That being said, we’ve taken on a burden in this department that extends beyond the elevated grocery bill—we’re highly restricted in our options for dining out, and every thing we do (I’m not exaggerating) has to be closely planned for ahead of time to ensure that Marshall has what he needs.  We can’t run out for a quick dinner because I’m behind on grocery shopping and meal planning.  We can’t send him to a birthday party without planning ahead for an approved treat.  We can’t drop him off at someone’s house without planning ahead to pack meals and snacks for him while he’s there.  We can’t show up for a potluck dinner without also packing a separate meal for Marshall.  To be honest, the price we’ve chosen to pay in this department is to be mentally “on” at all times. 

 I could go on for days with other specific examples: an expensive bike Marshall can ride more easily, bedding to meet his sensory needs, specific clothing that allows him to be as independent as possible, etc.  Again, my intent is not to complain—we’ve been lucky enough to afford the things Marshall needs at every turn thanks to our financial stability, a few grants, and supportive family members.  The true cost is in navigating the research, investing the time and energy, and the unrelenting thought required in each and every aspect of life.  The cost of raising a child with special needs in our family extends far beyond dollars and cents and into mental health and physical exhaustion; the inability to walk away or take a true break from any of it. 

The best example so far wasn’t a sacrifice in the traditional sense of the word—ironically, it was a privilege—but I would be remiss if I didn’t mention it.  This past year, I took a sabbatical from teaching to be home with my boys.  It was amazing and wonderful and I wouldn’t trade it for the world, but the honest truth is that it’s unlikely that I would have taken a sabbatical if I had two neurotypical kids.  We were faced with a harsh reality last spring: Marshall was significantly behind in self-help, self-care skills compared to his peers.  If we wanted him to be as independent as possible, he needed to learn to dress himself, how to walk in a store and stay close to the adult he was with, how to get himself a glass of water or clean up a small mess.  There were many skills he lacked that I couldn’t ask another caregiver to teach him.  Additionally, we were met with the reality that our schedule was unsustainable at that point.  We could not feasibly work full time and keep Marshall in outside occupational therapy, physical therapy, and any extra-curricular activities he may be interested in.  While I wasn’t technically forced into staying home, it was a huge financial sacrifice that we felt was necessary.  It turns out, I’m not the only one.  Today I stumbled onto this statistic:

“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.” –Autism Speaks

As I head back to work this year, I am grateful for the progress Marshall has made.  I’m thankful for the opportunity to return to work knowing that Marshall will be cared for appropriately at school each day. But the reality is, our savings took a big hit this year—we could not have continued living our current lifestyle on one income.  And I’m not talking about a particularly plush lifestyle, with expensive hobbies or top of the line clothing and accessories.  I’m saying that the honest discussion we had was that if we were to continue to live on one income, we would need to move to a much smaller house.  We would need to consider selling one of our cars.  The lifestyle we can’t maintain with one income, simply put, is the lifestyle that meets all of Marshall’s needs without sacrificing the needs of anyone else in our family, including Joey. 

Let me make it clear that I feel called to go back to work this year, and I’m really excited for the opportunity to head back to teaching.  The Lord has been all over every step of this process—I’d love to share the details with you sometime.  I am 100% confident that going back to work is the right choice, but the reality is that financial necessity was one piece of the decision making puzzle. 

So what’s the take away here?  I’m not asking for pity, and I hope that you’ll understand that 95% of the time, the reality of being Marshall’s mom is not sad and sobering.  It’s not something I dread or regret or wish I didn’t have to carry.  I cannot imagine a life any different than this one, and we are blessed beyond measure to parent both of our boys.  This post is, as is the case with the rest of my writing, simply a response in obedience.  Someone, somewhere, can identify with this or needed to hear it.  My hope and prayer is that this lands on the right screen in front of the right eyes— the rest is up to you.