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We Have Trauma Too

A friend’s child is in the hospital right now due to a heart condition. As I visited for a moment with her, I was brought back to all those times my child was in the hospital. How hard that is. There are so many maybes, and what if’s, and no guarantees. A mother’s worst nightmare.

This is a nightmare those of us in the special needs community are all too familiar with.

Mental health practitioners are recognizing more and more how medical trauma affects the children being treated. But what I don’t hear about is the vicarious medical trauma that parents suffer, and a light needs to be shown on it. Because it is real, and it is important.

An acquaintance recently posted about how she was having issues with her pregnancy and was being kept at the hospital for a while. But it was bringing back so many memories, triggering so much trauma from when her three year old was being treated for cancer and then later died.

In my work as a social work case manager, I remind parents daily about self care. I remind them how important it is to take care of themselves, I recommend that they seek therapy and healing.

So I’m going to remind you today too. The trauma you have experienced as you have shepherded your children through these illnesses and disabilities? It’s real. Don’t question it. Invest the time in yourself and your care. Seek out therapy, a listening year of a friend. Practice good self care. Your children depend on it.

But even more importantly, so do you.

Triggers: Because of Trauma

I haven’t been writing as much about my son and his special needs. There are a lot of reasons for that. Part of it is because as he grows older I have come to realize that it is his story to tell and he deserves to have that right to share when and if he pleases.

At the same time, I have a story too, and I think it’s important to share my story and be honest about what it is like raising a child with special needs. This story hasn’t ended even though I share less about it. This story is part of who I am now.

The end of May marked the end of school for my children and they are out for the summer. Their Dad and I both work so they are home alone and are probably loving that we aren’t there making them get up before noon as they are teenagers now.

About seven years ago, we started using doorknobs with key pads. At that time our son was really struggling. It was for safety so that when things got out of control his sister and I could escape to a room to be safe. We also use them on our pantry because he cannot control his eating. He has access to plenty of food, but having a place he cannot get into ensures there’s some food left over for the rest of us. These doorknobs have worked REALLY well for us.

As I said, my children are home for the summer, and my daughter didn’t want to get out of bed yet and get the Cheerios out of the pantry that my son wanted for breakfast. So she told him the code.

SHE TOLD HIM THE CODE!

We started using these doorknobs when the doctors were telling us to send our daughter to live with someone else so she would be safe. During a time when she was thrown into a coffee table with glass that broke and had bruising all over her torso. During a time I had to go have X-rays to ensure my back was okay after being kicked right after back surgery.

This has not been our story for the last couple of years. He’s much calmer and more in control. Food is still very much an issue, but safety is less so at this time.

But what I didn’t realize is the psychological comfort those doorknobs provided me, knowing there were places he couldn’t get to, where we could be safe. This loss has triggered my anxiety big time. It really caught me off guard. Add to that, it was during a time when my husband was out of town, the one person who could control our son when he got out of hand.

I DID NOT FEEL SAFE.

Nothing in my son’s manner caused this. He was doing his usual things and not being threatening in any way. But this was my response to the situation.

Because of trauma.

My trauma response was to immediately feel threatened. For my anxiety to spiral out of control quickly.

This is my story. My response. It isn’t wrong or right, it just is.

Knowing this, I can name my reaction for what it is. I can understand that my reaction is a normal reaction due to my experiences.

I give myself grace.

That being said, it’s also okay to know that I might have to take more of my emergency meds for a while. That things that normally don’t trigger me anymore may start triggering me again. It’s something I have to work through. Whether we get new doorknobs that he doesn’t know the code to, or I learn to let go and breathe, or something else. I will work through this.

This is my story and I choose to tell it.

Take Your Medicine And Other Self-Care Tips

“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.”
Read more…

How I Made It Through the Past 15 Years?

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.

My Greatest Hope and My Greatest Fear

“Two and one half years.

That’s the amount of time I have left until my son turns 18. Every time I think about it, terror grips my heart.”

Holding a Job and Being a Parent of Special Needs Child is Often Incompatible

“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.”
Read more…

Making Lemonade Out of Lemons

My husband is away right now studying to become a EMT for his work. Something that normally takes 6 months to do, his job is squeezing it into 2 months. That’s a lot of medical info to learn in a short time.

The night before his first test we were on the phone and we did a couple of his practice tests together.

I discovered something.

I knew most of the answers or could reason them out. I’m pretty sure I could have passed his first test without studying at all.

Earlier in the week I was out to lunch with friends and one of the woman’s sons has recently had to have an ultrasound on his thyroid. Another woman’s child had to have X-rays on her torso. We were talking over their children’s results, and I was explaining some of the things.

I’m no doctor or nurse. I don’t begin to claim to give any medical recommendations. However after so many years, and hours upon hours in doctor’s offices, therapist’s offices, and testing facilities I’ve found I have picked up quite a bit.

If your child has to undergo X-rays weekly, then biweekly, and then monthly for an extended period of time, you’re going to start knowing what to look for. Because my son had had so many X-rays as a small child of his trunk with his gastro intestinal problems, I knew what I was looking at when we xrayed him to see how bad his scoliosis was recent. I didn’t know what the percentage of curvature was, but I knew where to look and what was what on the x-ray.

So I’m going to call all of this hard-won knowledge “lemonade”. All those lemons of medical issues for myself, and my family, has brought knowledge I can put to good use. Both for myself and others. I really believe that all knowledge gained can be put to good use.

Being Held Emotionally Hostage

“I was recently talking with another mom who has a child with mental health issues. While talking she used the term “emotionally held hostage.” Those three words struck a cord with me because so often in the special needs, disability, and mental health worlds it can feel like we are being held hostage. By our children, spouses, parents, and even ourselves through our own illnesses.”
Read more…

Fear About Being Admitted to a Psych Unit

“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. ”
Read more. . .