“As parents of special needs children, we are preached a religion of self-care. We are told repeatedly we have to make time to take care of ourselves or we won’t be able to take care of anyone else. That’s all well and good, but when I was in the thick of the worst of special needs parenting having no idea what I was doing or how to make it through?
I wanted to punch every person who said that to me.”
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Yesterday, I spoke via Zoom to students and medical professionals from the University of Tennessee. The topic was, “What is it like raising my child with special needs.“ This is something I volunteer for regularly because it is so important to me that these young medical professionals have a small understanding of what is going on in the lives of the patients and families they see.
One of the questions I was asked was, “What do I do to be able to make it through the really bad times.” I thought that this was a really good topic for discussion here. Because if you have a special needs child, you deal with some really heavy things. Things that if you begin explaining to people who don’t experience things similar, will start slowly backing away and have a look of a deer caught in the headlights.
Our lives are different.
But we can still find beauty, peace, hope, and love even in the midst of the heartache and storm.
So what do I do that helps get me through?
My number one reliance is on God. When I reach that point where I can’t carry on, he has ALWAYS been there for me. He carries me through in sweet and miraculous ways. Like the time he actually sent someone to clean my bathrooms. I’m not making this up. He sent someone to do my most despised chore of all when I was at the end of my rope.
Finding, and making sure that I have things that bring me joy in my life is another thing that I hold tightly to. Fresh baked anything will always put a smile on my face. A good book, or British TV show brings a sense of calm to my soul I really relish. Playing or singing music, working in my garden to grow things of use and beauty. It makes me feel like I’ve really accomplished something and my soul rejoices in the beauty of what I have done.
Hot, long baths. This is my staple. When my children were small my husband had a very unpredictable work schedule. We also had very little money. Things people would think of for self-care, like going and getting a massage, shopping, girl’s nights out and vacations were very rarely something I could pull off. When you have kids like ours, even if you do have the money, finding a babysitter can be extremely problematic. So as soon as my kids were safely asleep I would grab a book and take a steaming hot bath. Water cools down? No problem, just add more hot water. I’m not sure I could have made it through if it weren’t for those baths. I have been known on occasion to take 3 hour baths.
Another lifeline was finding other people who were experiencing similar things. Parents who also had special needs children who had their own brand of unusual. One mom I know wore a football helmet every time she got in the car to protect herself from things being thrown at her while driving. I’m sure there was more than one second glass as she drove the freeways to and from appointments. But this is the kind of different we live in. Knowing that there are people out there that get why we do what we do, and can even top our story? It’s a God send. These are your people and your kid’s people.
So if you are wondering, “How can I make it through another day of this?” Try a few of these out. They helped me a lot.
“The first story I’ll tell you is that of a single mom. She recently discovered that her daughter had serious medical issues. All of her sick leave and vacation now go to time off for medical appointments. She has enough for this year, but next year, she will likely burn through that quickly. Vacations will now be a thing of the past while she desperately tries to balance working, being a mom, and the care of her sick child. She is lucky. She has worked with the company she works for, for over a year and therefore is eligible for the government program of FMLA (Family Medical Leave Act). This act protects her job and ensures she gets time off- though unpaid, to care for her child.”
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“And so I sit here, trying to understand that because my life is not filled with trauma causing events, and has really calmed down in a lot of ways, that it makes me feel like a fraud. As mental health is my chosen field to study and eventually work in… This makes me want to dig into this further.”
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“Mental health is a scary issue for many people. There is so much stigma attached to many of the diagnoses. Adults frequently are afraid that they will lose their jobs if anyone finds out. This leads to not getting help, and not being able to talk to anyone about their mental health isolating them from the world. Which in turn, can lead to more mental health issues like depression and anxiety. ”
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“. . .there is one bright spot in this COVID world that should have all of us with special needs family members rejoicing.”
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“As a parent with a special needs child, we are expected to have a medical degree, multiple therapy degrees, education degrees, degrees in nutrition, psychology and more. (I’ll be able to claim the psychology degree in a few months.) At least it seems that way when we take our child with Autism to the doctor or consult one.”
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“What if this is the best he can do?”
This question haunts me. Read more. . .
“The big push currently in the special needs world is to include the voices of adults or children in our discussions of treatment and taking their experiences under consideration. People who actually experience the issue weighing in on their treatment.
I think this is a good thing. Their voices NEED to be heard and they have been silenced for too long.
But. . .
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“The lame walk, the blind saw. The leper was healed, and the dead lived again. The New Testament is full of Christ’s miracles of healing. We read of great faith of many with and without names that are given.
Something the Bible doesn’t say?
It doesn’t say that every single person with an ailment was healed in Judea. It doesn’t say that every single person who had faith to be healed was healed. “
Read more. . .
