I remember being in the crowded elementary school gym one time, when people literally just stepped over my daughter while she was having a seizure, as though she were a bookbag.
I remember standing in line at the grocery store hearing a woman complain bitterly to her companion that her son wasn’t chosen for the team. I was thinking to myself, “You have no idea how good you have it.”
While it was not my intention to shut anyone out, the fact is that I was shut out anyway.
It was not that long ago that I had a full circle of friends, was invited to every party, and my social calendar was booked three months in advance. That stopped soon after my daughter was diagnosed with epilepsy. While it was not my intention to shut anyone out, the fact is that I was shut out anyway. Why? Because special needs parents experience many things, including isolation. Whether it was “them” shutting me out, or me shutting them out (I don’t think so), being the parent of a special needs child was a lot of things, including isolating.
My life as the parent of a special needs child has also been a financial struggle. There was no doctor I wouldn’t pay to see, no medicine I wouldn’t agree to try (no matter that it may or may not have been legal in the United States, or a trial drug that was not FDA approved, or even if it were a “black box” medication) because the important thing for me was to keep my daughter alive- and while she was alive, to give her the best life possible.
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This meant not changing jobs, as my then-current employer accepted that I often had to leave work. I still got my job done, often in the middle of the night, and I felt I had job security. Insurance became a large concern as well. Was it more important to stay with a lower paying job that provided the health insurance my daughter required?
Special needs parents face significant out-of-pocket costs:
In addition to a constant fear of the unknown future, special needs parents must address the unknown present as well. A child’s lifelong disability becomes a parent’s lifelong obligation (it doesn’t end as the child turns 21, 25 or 30) to provide for and be that child’s advocate, now and forever.
In addition to a constant fear of the unknown future, special needs parents must address the unknown present as well.
Why am I telling you this? Because I am obviously not the only one in this position, and I have a message for those of you who are special needs parents and those who want to be supportive to those in your life (be it “that kid’s mother” or someone close to your heart) who face this mostly unspoken about topic and aren’t sure what to do to help.
While being the parent of a special needs child adds tremendous pressure and exhaustion, there are things to consider that can provide peace of mind. Below are a few tips that I wish someone had shared with me.
To be quite honest, however, I did not want to seek out help, when maybe I should have. I was blindsided and ever-hopeful the right medication to alleviate my daughter’s symptoms was around the corner. I was too busy trying to keep my job and to keep my child alive. That was over ten years ago.
In retrospect, though, a few of these ideas may have helped me then, and I hope they can help you, too.
On that very note, this is a “no procrastination zone”. There is a lot parents can do and while they may feel powerless in many of the challenges they are faced with, there are things they most certainly can do. A positive attitude and solid perseverance are required, every single day. That being said, this doesn’t all have to be done in one day. Tackle any one of these items over the course of a month, or even a quarter:
Taking this step will also force the parent to face the reality of what will happen in the worst case scenario and to seriously consider who can handle this type of commitment, who has bonded with the child and who has the personality traits to deal with the day-to-day responsibilities. (Please also make sure to discuss your intentions before naming them).
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Not taking this action means leaving vital decisions, that will directly impact the child, up to a probate judge who has none of the personal knowledge critical to the child’s future success.
Learn the benefits you are entitled to. That means a dull read of your actual health insurance policy. Sorry, not the information packet provided by your employer, but the full actual policy. These are things you need to really know:
Be aware of some of the warning signs of financial trouble: expenses exceed income on a regular basis; using cash advances and credit for everyday purchases; skipping payments on bills; and/or no savings for retirement. If this looks familiar, there are options to consider, including communicating with creditors to advise of the medical situation and seeking payment arrangements and/or negotiation of a settlement.
I recognize there is a lot of responsibility on the shoulders of special needs parents, and I do not intend to be burdensome by adding to the pile. Unfortunately or fortunately, depending on the day of week and year, the shoes I wear may look something like yours, and if taking any of these steps can bring you a bit of peace, then I have done my job.
Wishing everyone wonderful health, and if that is not in your stars, then I am wishing you the best quality of life while struggling with those health issues. If this does not apply directly to you, be aware of those around you to whom it does. A little empathy and encouragement go a long, long way. Trust me, I’m a lawyer.
I’m a debt settlement and bankruptcy attorney who negotiates resolutions between clients and their creditors. I am also a real estate attorney involved in both sides of purchasing and selling distressed real property. I am passionate about teaching people about money and helping individuals of all ages achieve financial independence and success in a "no…
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