What I Spend on My Child With Special Needs

Photo by Evan Kirby (cropped) on Unsplash.

I’m a 35-year-old married mom with two kids, one of whom has special needs. I have always had a pretty good handle on my family’s finances and take care of all the bills, planning, and YNAB-ing, but when my three-year-old son was diagnosed with autism a little over a year ago, I had no idea how our lives would change, let alone how our finances would be affected. Over the past 18 months, we’ve been through a maze of bureaucracies to get our son assessed, diagnosed, and set up with the services he needs. Now that we have a fairly good routine in place, I’ve had a chance to tally up some of the newfound costs associated with my son’s diagnosis. Although my husband and I make a pretty good upper-middle-class salary, we have to budget carefully to make sure that everything gets covered and we’re still saving enough for retirement.

Daycare: $1,510 per month

We managed to get our son into a small, high-quality Montessori daycare/preschool right around the time we were beginning to possibly suspect autism. The Montessori school is on the more expensive side, but still within the normal range of childcare costs in our city. His teachers are well-qualified and have been incredibly supportive, patient, and caring, so we plan to keep him here until he’s ready for kindergarten. We could possibly find a cheaper care option, but keeping him in a place where his teachers and peers accept him unconditionally and where he has a stable daily routine is worth the extra cost to us. He will move to the preschool group in a few months and at that point costs will drop to $1,390/month. Currently we pay a total of $2,500 a month total on childcare for both kids. Once our daughter is in (public school) kindergarten and our son is in the preschool class, our total costs will drop to about $1,950/month.

As a side note, it is really hard for parents to find high-quality childcare that will accommodate children with special needs. Programs specifically for special-needs children tend to have wait lists and very limited hours (e.g. preschools that are in session only a few hours a day), and traditional daycares often don’t have the staff training or support to help a child with special needs thrive. For this reason, among many others, I would say that the majority of families I know with autistic children have one stay-at-home parent (almost always the mom).

Therapy: $240 per month in copays

When we first started out, we had our son in speech therapy once a week. At a mere $10 copay a pop, it felt like a bargain! We have since switched him to a different kind of therapy where a therapist comes to our house and helps him improve his speech and behavior through play and observation. I have excellent health insurance through my job, but at the start of 2018 all specialist visit copays for my plan doubled from $10 to $20. Plus, we decided on three therapy sessions a week. So, in one fell swoop, our monthly copays went from $40 to $240.  I get some of this reimbursed through an FSA (although I didn’t max it out for 2018 because I didn’t realize the copays were increasing), and at some point late in the year we will reach his out-of-pocket max, but until then this is a bit of a squeeze in our budget.

Advice: always run the numbers for your different health insurance options every year! I have a high-deductible/HSA option available to me, but didn’t think it made sense for us at the time. After running the numbers with my son’s projected annual health care costs, I will be moving us over to that plan next year for sure. My employer makes a generous HSA contribution that will cover my son’s individual deductible, so we’ll likely meet the deductible in the first couple months of the year — and then the rest of his care for the year will have zero cost share. Even if we contribute to the HSA ourselves, we’ll still come out ahead.

Early intervention: $0

Every county offers some kind of early intervention program for children with suspected developmental disabilities. Through our county’s program, our son gets a weekly session with an early childhood specialist who comes to his school and works with his teachers. She also meets with us a few times a year to set goals and review progress, and sends us links to events or resources that she thinks might be helpful. There has been a real push to get families set up with Early Intervention as soon as possible so that children can get the resources and services they need. Although we make too much money to qualify for most other state and federal programs intended for children with special needs, I’m grateful that we get this help and that it’s free!

Equipment and supplies

Here’s a list of some things we have purchased for our son that have really improved his quality of life:

  • Mini-trampoline ($65) — My son loves the rhythmic motions of being on a trampoline or swing. This helps him use up excess energy, especially on days we’re stuck indoors due to bad weather.
  • Chewy tubes ($12) — OK, he didn’t use these much, but an occupational therapist recommended these silicon tubes to help build his jaw muscles for speech.
  • Flavorless toothpaste and sensory toothbrush ($15) — Brushing his teeth used to be a constant ordeal. With flavorless toothpaste and a specially-designed toothbrush that covers the tooth so less brushing is necessary, he doesn’t go into sensory overload and we’re able to clean his teeth. Win-win.
  • Weighted blanket ($65) — We had this custom-made by a local seamstress. He doesn’t love it yet, but I’m hopeful we’ll be able to use it in the future to help him sleep better and calm him down.
  • iPad ($429) — This wasn’t a necessity, but an iPad can be a great tool for children who are “pre-verbal” or have limited verbal communication. Aside from the usual children’s learning apps that teach the ABCs and numbers, there are also special “Augmentative and Alternative Communication” (AAC) apps that help kids communicate by selecting pictures or words on the screen which are then dictated out loud by the app. Some of these apps can be quite expensive, but they help autistic children communicate their thoughts and feelings even if they can’t speak.
  • Clothing (varies) — Our son has sensory processing issues, and certain clothes and shoes tend to bother him a lot. Once we find a piece of clothing that seems to work for him, we usually buy multiples of it to make sure we have extras if needed.
  • Melatonin ($10 for a month’s supply) — Many children with autism also have sleep problems. On the advice of our doctor, we give our son a small dose of liquid melatonin every night to help him sleep. It seems to help and isn’t too expensive.
  • Diapers and wipes ($75/month) — This is a normal kid expense, except for the fact that autistic children tend to potty-train later. Even though our son is three, we’re likely looking at another year of diapers at least. We save by buying the generic brand from Target.

There are areas where we save money, too. We travel less and eat out less as a family because those sensory-overload situations are usually too stressful for my son. Right now, we’re content to stay close to home, enjoying local parks and playing in the backyard for family time. Eventually, I know that most of the costs listed above will go away — and in the meantime, I consider it more than worth it to support our awesome kid and give him everything he needs to be happy and healthy.  

Beth (not her real name) is an analyst in Portland, Oregon. She recently quit several social media platforms in favor of more reading, cooking and playing an antique mobile game called Pocket Frogs.

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