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Will It Be My Fault?

I sometimes think back to the early years of my kids lives. They were born in 2006 and 2007. Until 2015 I dealt with debilitating back pain. In 2013 I had my first back surgery which didn’t work. In 2015 I had my second surgery and almost 8 years later I’m still doing well.

But those early years meant a lot of mom laying on the couch or bed, trips to doctors, emergency rooms, and chiropractors. When we were preparing for my second surgery my daughter was terrified what would happen to her and her brother. She remembered that after the first surgery I couldn’t do much. Who was going to take care of them? Who was going to feed them?

As I remembered this today, it struck me that my husband and my roles are reversed now. He is frequently in hospital, or at doctors when I can drag him there (men!)., in bed and not feeling well. Now they worry about him.

Who is going to be there for them when he cannot?

Parents are central to a child’s survival and psyche. It is from them a lot of our self talk comes from. It is from them often we learn to rely a lot on others or be very independent.

I worry that because of all the physical pain I was dealing with, which in turn greatly affected my mental health, I was not enough. Add to that dealing with other people in the family’s mental health and the strain it put on me.

Did I raise children who will sit on a therapist’s couch one day because their mother ruined them? Because she wasn’t emotionally or physically available?

As they are teenagers now, I wonder through these years of their hating me one minute and breaking down to tell you they love you the next. Did I fill their needs? They were fed and clothed.

Will My Kids Say I Was Enough?

“Did I fill their needs? They were fed and clothed.

Did they know they were loved? I tried to spend quality time with them.

Was it enough?”

MASH and Autism

I have fond memories of laying on the living room floor watching MASH with my Dad when I was little. My husband spent 23 years in the military so he’s a big MASH fan. My kids surprisingly love it too. But what does MASH have to do with Autism?

My husband found a book written by the actor who plays Father Mulcahey in the MASH series. It turns out, he and his wife raised a son with Autism. The book details their struggles to find answers and help for him.

If you follow me on Goodreads- or even here for that matter, you’ll know I read a lot. Last year’s number of books read was 108. But there is one narrow genre of books I almost never read any more.

Books about Autism.

When our son first received his diagnoses I over indulged, and then the life that was being described within the pages of the books became all too real. I just couldn’t.

My husband encouraged me to read the book Mixed Blessings by William (Father Mulchey) and Barbara Christopher. So I read it.

Their journey started 50 years ago. I found the book both fascinating and horrifying as I read what they tried, what was recommended by professionals at the time, and how much dedication they put into trying to help their son.

But overwhelmingly? I found it unbelievably depressing to find that things haven’t changed all that much. That many of the things they struggled with- IEP’s, doctors, therapies, shear exhaustion- we are still dealing with these exact same issues 40 and 50 years later. I can’t tell you how heartbreaking this is to realize.

This is why I don’t read books on living with Autism.

Judging A Right To Life or Death

“A couple of years ago, I took a college class entitled Death, Dying, and Bereavement. It was a fascinating class. We talked about different types of death, bereavement, and the act of dying. One of the topics covered was whether people should have the right to choose their death when they are terminally ill. I learned something really important from that class.”
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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.”
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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.

When Cookie Monster And Oscar The Grouch Want Food!

“I’m told by professionals that one of the hardest behaviors to curb is anything to do with eating. This makes sense because my professors have said that the hardest mental illnesses to treat are eating disorders.”
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COVID Is Changing The World For Families Like Mine In A Good Way

“. . .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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Dear Health Professionals

“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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Why Some Medical Professionals Fail Us

“Many of us reading this have at least one horror story with a doctor or other medical professional that we could tell. Some of us have many stories. Frequently we wonder how or why those medical professionals came to be in this position because they are SO awful”
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