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Lots of people have things about their daily routine that they do religiously.
Some may have that cup of black coffee with one sugar cube and a dash of cream, some may practice yoga or head to the gym, while others read a novel from the best seller list before going to bed.
While I do get up planning to be a mommy superhero each day to my child with special needs, and do lots of amazing things each day - like assist my child with learning new skills, being his access to all physical activities he unable to independently master, and juggle physician, therapy and rehabilitation appointments - I am still conscious and aware of nurturing my own self-happiness with days that are filled with a mixture of both challenges and blessings.
I know that I’m a stronger parent if I am practicing great love and devotion from a strong place of health and happiness.
I make a conscience effort to practice these three things everyday in order to be the best special needs parent that I can be:
“The richest, happiest and most productive lives are characterized by the ability to fully engage in the challenge at hand, but also to disengage periodically and seek renewal” – Loehr and Schwarz
This is one of the biggest things that I remind myself to practice and do daily.
Being a special needs parent is exhausting on so many levels. The demands that are placed on us are difficult. We can’t just be “mom” or “dad.”
We are our children’s secretaries, their voice, their therapists, their doctors, and advocates.
We wear multiple hats in a single hour let alone what we attempt in an entire day.
Our days are filled with endless challenges and fighting battles on behalf of our children.
We put on our imaginary war gear and head into IEP meetings while smiling and carrying a box of donuts to demonstrate we have a sweet side; we can send thirty emails in one day to a caseworkers and durable medical equipment providers asking for benefits and adaptive equipment; draft appeals paperwork in our sleep, still juggle nine loads of laundry, take the ailing dog to the vet, get dinner on the table, read four bedtime stories, and fix two wheelchairs that have a broken lateral and headrest.
Even faster on the days when the odds feel stacked against you and insurance comes back with five denials in one day, or you’re told your child’s therapy hours are being cut due to financial cut backs.
While we can handle the best of challenges, it is essential to seek renewal so that we can refuel ourselves so we can go the distance long-term.
For me this often means I take long periods away from social media or emails, or outside distractions so I can refocus.
I also take time to absorb the important things, like getting down on the floor with my child with special needs and taking notice of the sweet smell of his hair, feeling the depth of his laughter.
Doing something spontaneous like going to the zoo on a Tuesday – just because we can, or devoting a day to no phone calls, therapy or appointments and having all of us spend the entire day in pajamas – just because we can.
It is easy to become self-absorbed with the complications that special needs parenting can bring.
It’s a beautiful and easy distraction from things that are often beyond your control if you can be of assistance to someone else during their own difficult day and set of circumstances. This can be really simple.
You can pick up the phone to reach out to a fellow special needs mom to remind him or her that you are thinking of them, sending a note to help give advice on adaptive equipment or therapies, it could be doing a good deed anonymously, this really could look like anything as long as your intentions are to help someone else in some way.
There is no greater feeling than the act of kindness – and the reminder that we all can make a small positive difference.
This takes away from the drowning feelings and self-pity moments that special needs parents can fall prey to. You can’t be sad when you’re making someone else smile.
The fact of the matter is we’re going to lose more than we win when you have a child with special needs.
This can make you feel like you are sinking quickly.
Finances tumble down the drain, insurance denials knock you off your feet, losing government services burns worse than any wound from a hot oven, having therapists come in and out of your child’s life is a colossal drag, and doctor’s giving you nothing but continual doom and gloom predictions about your child’s future feels like the icing on a yucky cake.
This is going to look differently for everyone.
Try working out for 30 minutes each day to a in-home exercise video, make a point to color each day with your child and help build their creativity, make an effort to take a shower by 8am every morning.
Doesn’t matter what it is – find a tiny goal that is easy to make a personal win.
You’re going to need that “win” when you reflect on a really hard and trying day. This “win” will become essential in balancing out the challenges.
Find something that you can do everyday that is going to help nurture yourself and make you the best special needs parent that you can be. You can do it! I believe in you!
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