Families that have a child with a disability often have one caregiver that is forced to scale back their participation in the work force.

The Statistics

It was reported recently in an article by Shaun Heasley of Disability Scoop that researchers have found that a significant number of caregivers of children with special needs reduce their work hours or leave jobs altogether. This costs their families an average of $18,000 per year in lost earnings.

The findings come from a study published recently in the journal Pediatrics that is based on an analysis of data from the federal government’s 2016-2017 National Survey of Children’s Health.

The study discovered that nearly 15% of families with children who have chronic health conditions including autism, epilepsy and cerebral palsy have scaled back their participation in the workforce. That figure jumps to more than 40% in families of children with an intellectual disability.

I know this to be true because it is exactly what happened to our family. When my oldest son was small, we had so many medical appointments, therapies, and school meetings that I decided to become a stay-at-home Mom to ensure he got the care and resources that he needed. Fortunately, we were able to live on one salary, but the decision did not come without sacrifices and trade-offs.

In 2013, our family purchased the FATWHEELS brand and we embarked on this amazing journey. The fact that we could supplement our income while also helping other families whose lives have been touched by disability, was a double blessing.

In the past 8 years, this business has really become a family affair. Both of our sons help my husband and I in the warehouse and with any other jobs that need to be done. Today, as I write this blog post, my youngest son is in the other part of the FATWHEELS building painting our supply room😊

We have found a way to make lemonade out of lemons and I know that there are many of you out there that have too. I would love it if you would share with me some of the things that you have done to make up some of that lost income.

And, if you have been able to work outside of the home, tell me how you are doing it!
Who helps you in your caregiving duties? Who are your Tribe? What are your workarounds and secrets?

Did your work status change during the Pandemic?

I hope you take the time to share with me – I would love to have some company on this beautiful ride.

Until next time,

Colleen

Recently, my husband had surgery for prostate cancer. Not to worry. All is well and the procedure was a success. However, the process was grueling. It was a long s-l-o-w recovery filled with pain, exhaustion and pills – and that was just me – he had a hard time too!

During the long weeks of his recovery we watched a lot of TV.  One afternoon a commercial for a cancer drug came on.  It portrayed a woman with metastatic breast cancer going about her daily routine and she didn’t look sick.  The weather was beautiful and she was out at the local farmer’s market buying organic fruits and vegetables.  As she pedaled up to her lovely home with fresh cut flowers and produce in her wicker bike basket, a faithful golden retriever trotted up to greet her.  When the commercial ended, my husband and I looked at each other like, REALLY?  We were in the midst of dealing with a cancer diagnosis and our experience did not look anything like that! Although, in all fairness to the drug company, it did closely resemble the end of the commercial where they listed all of the horrible side effects…

THE COMPARISON TRAP

Have you ever felt this way in your experience as a special needs parent? Have you ever thought, ‘What a crock!’ I know I have. Let me set the scene. You are bone tired and emotionally exhausted from dealing with your child with <insert condition>.  You pour yourself a cup of coffee, grab your phone and plant yourself on the couch to catch your breath.  You login to social media and instead of feeling refreshed your heart sinks.  Your neighbor’s son, same age as yours, has just gotten an academic achievement award in middle school and you’re still trying to teach yours how to tie his shoes.  Your sister is off on a Disney vacation while your last attempt at a fun family outing resulted in your daughter melting down at McDonalds due to sensory overload.  You are genuinely happy for your friends and family.  They are good people. Supportive. Helpful. Loving. But all you want to do is unfollow their profiles because their ‘perfect’ life is painful to watch.  STOP!  Don’t fall into the comparison trap!

If I have learned anything on this special needs parenting journey it is this:

It is destructive and futile to compare our children to those of their typically developing peers.

That’s it. No other advice on the subject. No anecdotes. No inspirational quotes. Just a heartfelt plea for you to do yourself a favor and STOP! I cannot put it any clearer and I cannot stress it enough. If you can conquer this one temptation your special needs parenting journey will be 100 times easier. It will allow you to relax and enjoy your child for who he or she is.

THE UNHAPPINESS GAP

There is a theory that states that the space between our expectations and our experiences is called the unhappiness gap.  In other words, how we think things should be and how they really are = our level of unhappiness in any particular situation.

So forget the shoulds. Don’t worry about what other people’s children are doing and when. And don’t get fooled by the commercials for shiny happy lives that people broadcast. Like those unrealistic advertisements on TV, the reality of their situation usually doesn’t match the hype.

Life is messy. Parenting is hard. And parenting a child with special needs is even harder. Keep your expectations realistic, accept your reality and remember that NONE of us ever gets away without experiencing some of the nasty side effects of life.

Until next time,

Colleen

My son Geordi has a speech disorder that is annoying, heartbreaking and funny at the same time. My patience wears thin when I listen to him s-l-o-w-l-y  work through what he is trying to say.  Other times, my heart goes out to him as he struggles to express his feelings.  But mostly he simply cracks me up with some of the stuff that comes out of his mouth.

I was in a bookstore the other day when I saw the title of a book that almost made me snort latte out of my nose.  It was called Get Out of My Life, but First Could You Drive Me and Cheryl To The Mall?   by Dr. Anthony E. Wolf PhD.

This title is a perfect description of my current reality with my son.

Everyone has their favorite traditions.  One of mine is decorating the house for Christmas.  I love putting on holiday music, grabbing a cup of coffee and going through the boxes that my boys have brought up from the basement.  Then I spend the next couple of hours putting away my everyday decorations and putting up my Christmas ones.

This year, as I was going through the motions, I began to notice – really notice – all of the beautiful things in my home.  Everywhere I looked I saw flashes of creativity and joy!  There were bright colors, and a myriad of shapes.