Special Needs Mom’s Perspective
Families with special needs children face many challenges on a daily basis; tasks that families without special needs often take for granted. Beyond the child’s physical and intellectual challenges, families may face physical barriers in their homes and on their daily journey; difficulties navigating the red tape and bureaucratic machines that are insurance companies and schools; they also all too often face financial challenges. For many of our families, one parent must stay home and provide constant care for the special needs child. Finding qualified, affordable care is nearly impossible for most families, and thus, the family income goes from two paychecks to one. My family is one such family.
Before having children and years before becoming a special needs mom, I had two fantastic jobs. During the day I was a special education paraprofessional for the school district. After the school day ended, I would go to my other job as a community trainer for Goodwill. My job there was to provide respite to parents of children with special needs. I remember wondering why Goodwill paid for respite, not the families. I wouldn’t understand until years later how much more money, time and effort special needs children required than typical children.
I left my jobs towards the end of my first pregnancy with the hopes of returning to work around my daughter’s first birthday. Life happened as it so often does, and my well-thought out plans were no longer applicable. By the time my daughter turned one, the military had moved us cross country and back again - and we were expecting another little one. Although my plans to return to work were put on the back burner, it wasn’t until after my second daughter, Josie, was diagnosed with health issues, and the birth and subsequent Autism diagnosis of my son, Teagan, did the dream of returning to work come to a screeching halt.
In six short years, I went from the respite provider to the respite recipient.
I listen to friends talk about their careers and I get a twang of jealously. Although my youngest is well past the year old mark, there is no way I can consider returning to work at this point. Therapy schedules dictate my hours of availability. Currently, my son’s weekly 14.5 hours of therapy and my daughter’s all-day specialty doctor appointments negatively impact any opportunities to work that may come my way.
It is no secret that children are money pits. Between the clothing, the ‘must have’ toys and the copious amounts of string cheese they eat, it is a small miracle if you don’t spend $100,000 on the child before they reach 18. Having two children with special needs, we still pay for the clothes, toys and cheese. But we also pay travel expenses to specialists that are over an hour away, bi-weekly carpet shampooer rentals to combat fecal smearing, and medicines that aren’t covered under Tricare. The current cost to drive to our specialists is around $45 per trip, including gas, insurance, and wear and tear on our vehicle. That is without stopping to eat after what could be a 9 hour day.
On top of the day-to-day costs of raising a special needs child, there is additional cost if your special need child needs to be in a childcare setting. My son is sensitive to noisy rooms and will often bite himself or others in response to the auditory stimulation. This is obviously frowned upon by most childcare centers, so my son would require a quieter, more intimate setting. My daughter needs to be in a calmer environment where we don’t need to worry about falls or bumps to the head, mix ups with drinks or an outbreak of the sniffles. The provider would need to know how to properly handle a meltdown and what to do if my daughter went into respiratory distress. Unless I learned how to spin gold from straw, it is unlikely that someone with my skill-set could land a job that pays well enough to hire someone qualified to care for my kids.
I wish that I could go back to the families that I provided respite for and apologize for ever questioning the service they received. I now understand firsthand the added costs of being a special needs family. Although we pinch pennies to stay afloat, the twang of jealously over a lost career get fewer and farther between with each milestone accomplished because of the hours of therapy.