Ever look at your savings and wonder where all the money is going? Being a parent is expensive. When you have a child who has additional needs, the cost goes up exponentially.
Medical bills, co-pays, and adaptive equipment – we budget for these things. We know they’re coming. So why are vacations such a struggle to save for? Why does a night out feel like such a luxury?
When you take a look at all of the little things we shell out for – you’ll see it adds up to a lot.
Let’s be real, it’s nearly impossible to line up a cheap date. And it’s not just dinner and a movie that we’re talking about. Finding a caregiver who can handle our children’s special needs can be difficult. It can require training. For some of us, it means finding a nurse. Even if our child’s needs aren’t that significant, the mention of a disability can lead to an automatic surcharge. Maybe that’s why so many of us opt for delivery and a movie at home after the kids have gone to bed.
TREATING OUR TEACHERS
Holidays, teacher appreciation week, IEP treats, that token of gratitude at the end of a year. We want to show our children’s school team that we care, but doing so can cost a small fortune. Most kids have one or two teachers and a maybe a paraprofessional. But our kids have a small army of professionals helping them. Acknowledging their hard work, even with something small, a few times a year can end up costing a lot.
There are ways to show your appreciation without breaking the bank.
SHOWING LOVE TO THE HOME TEAM
We can’t forget our children’s home team. The ABA therapist. The speech therapist. The caregiver. It’s customary to show our gratitude around the holidays. But these people often become a part of our extended family. We want to celebrate their milestones too. Birthdays, weddings, a new baby are marked with gifts. It is money well spent. These people are cherished. It’s another thing “typical” families don’t have to shell out for … then again, they don’t have the privilege of knowing these amazing people.
How many of us moan and groan when we have to stop to fill up on the many trips we take to our child’s specialists? Medical bills we’re ready for, but the cost of fuel, the wear and tear on the car, the oil changes, the new tires – we have to do these things a lot more frequently because of the extra mileage we log for our children.
The same goes for parking. Have you ever wondered why frequent fliers like us don’t have their own special section so the fee is waived? $2 here, $5 there – that money could be spent on a much-needed stop for coffee!
We are often so busy caring for our children that finding time to cook for our family is hard. Ordering out on days that are particularly busy is worth every penny. As is picking up those pricier pre-cut fruits and vegetables so you have easy, healthy options on hand. Trying to feed our family healthy meals while on the run is not easy or cheap.
Let’s not forget special diets and food aversions. Sometimes we have to make more than one dinner because telling our kids “you eat what I make you” just isn’t that simple. And the long list of other dietary needs: Purees and soft options for children who can’t chew. High calorie diets. Low calorie diets. Gluten free. Dairy free. Liquids thickened. Foods thinned. Obsessions with a particular food (and if you dare stock up you risk having to throw it away when the obsession changes). There is always something, and it often requires a trip to a specialty store and extra work and cost for the caregiver.
UNFORSEEN MEDICAL COSTS
Then there are those medical necessities that insurance doesn’t cover. New lenses for the glasses that your child chewed up when you weren’t looking. Special eyeglass frames that won’t slip down your daughter’s nose. Orthotic inserts for your son’s shoes. That new, expensive medication the doctor swears will work. A back brace. A special skin cream. Saline spray. Essential oils. An amazing therapist that’s out of network. Supplements you pay for out of pocket. The list could go on and on and on …
Diapers, wipes, colostomy bags, catheters, toilet training gear, potty training books. Going to the bathroom isn’t always easy for our children. Diapers only get more expensive as they get bigger. The increased time it takes to potty train is stressful, it means we have to buy more underwear, spend money cleaning upholstery and carpets. And the laundry, loads and loads of laundry.
Sign language DVDs, iPads, Cards, visual schedules, eye gaze technology. We are always finding ways to reach our kids who are nonverbal or have delayed speech. And the tools are rarely free.
Pants with elastic waists for children with poor fine motor skills. Big kid onesies for older children in diapers. Alterations so clothes can fit kids who have different dimensions and shorter limbs than their typical peers. Tailoring clothes to fit around medical equipment. Special shoes. Our children deserve to look good. Finding clothes that compliment their cuteness as well as their needs is hard to do. And like so many other things, it comes at a higher price.
ACCOMODATIONS AND AIDS
Then there is the endless list of adaptive equipment that can help our children navigate this world with ease that our health insurance won’t cover. Special pencils. Sensory headphones. Balance bikes. Additional railings. Strollers for big kids. Car seats for big kids. Ramps. Accessible vans. Another list that could go on and on …
IEP meetings, visits to specialists, special financial planning (if we can afford it), hearing screenings, sleep studies, appointment with caseworkers – these are just a few things that we have to miss work for that parents of typically developing children rarely have to consider. And if they do, those commitments rarely crop up as often as they do for us.
Perhaps the toughest strain on our income is the cost of missing work. It’s imperative that single parents have either an understanding boss or a great support network nearby, preferably both. Dual income families might have a bit more flexibility but it’s not easy for them either. One or both parents need to have a flexible job that allows them to take time off when necessary. Some families decide to have one parent stay home, which is an expensive decision as well.
The effect of missing work isn’t just expensive; it’s stressful. You can get behind. You eat up your vacation time if you’re lucky enough to have it. If you don’t, you’re either not getting paid for that time you miss or you’re burning the candle at both ends trying to make up for those missed hours. You worry about letting your coworkers down. You worry about letting your family down. It is a never-ending cycle of stress and guilt.
And lets not forget the cost of caring for ourselves. We get so caught up in making sure our children have everything they need that we tend to put our own needs on the backburner. But it’s important we keep up with our own checkups. It’s far more expensive to treat an illness than it is to prevent one. Set those reminders for yearly physicals, dentist, and other appointments.
Raising a child with a disability brings about a unique set of stressors. In an ideal world we would have the time and money to see a therapist or get a massage or take a family vacation. Those aren’t always an option. But taking a moment to breath, going to bed early(ish), and investing in a really good coffee maker are usually within reach.