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Advocacy Is Imperative for a Special Needs Parent

What does it take to awaken the advocacy mama bear in me?

When we lived in Alaska and Washington State, I spent a lot of time advocating for those with special needs. I testified before a state committee, appeared on television, picketed the state disability offices, provided help to families with Individual Education plans (IEPs), and formed a group that worked on helping those with disabilities be heard and get what they needed, and getting a special needs PTA up and running. We moved to Mississippi and 6 months later COVID started. I haven’t been involved with advocacy here at all. It wasn’t that there weren’t things that needed advocating for. It was more that with going back to school, working, and the shutdown of COVID I didn’t have the time or things were so influx due to COVID no one knew what was going on. No one knew how IDEA and FAPE applied in a COVID world.

Why did the advocacy mama bear awaken again?

A school saying that despite my son finally passing pre-algebra after taking it 5 times, it will not count as a math credit. Because the class was not passed while my son was in 9th grade, they are saying that the state is it cannot count as a math credit. It will count instead as an elective credit. What this means is that my son is starting from scratch on his math credits and in his final semester of school he will have to take 2 math classes at once, and take a harder math class than he would need to graduate because he has no math credits currently. This is my child who has dyscalculia- a math disability.

Dear state legislatures and educators-

It shouldn’t matter which grade a child passes a math class as long as they pass it.

Calleen Petersen

Mississippi ranks at the bottom on many measures of education. Why are we making it harder for children to graduate for nonsensical reasons? Have you heard of IDEA? How about IEPs? Do you need a refresher course?

This is what it took to wake me up. In social work, advocacy is part of the job on a macro and micro level. I will not stop until this policy is changed, not just for my son, but for everyone else. And then I may turn my efforts to their “graduation track” policy that has been struck down in other states.

Mississippi, you don’t know what you just unleashed.

Be Brave, Give A Second Chance

“Sometimes, letting your guard back down and giving someone another chance is one of the best decisions you could make.”
Read more.

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.

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.

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…

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.”
Read more…

Are You Heard, Seen and Known?

A universal need.

That’s what my social work classes call it. The human need to be heard, seen, and known. It was a central feature of my first grad school class. It’s something that has been in my thoughts a lot over the past 7 weeks. I’ve talked about it with my Mom, my friends, and taught a lesson about it at church.

And here is what I’ve found.

It’s true.

We need to know that someone, somewhere knows the real us. That we are seen for who we are. That our wants, needs, and desires are heard by someone.

One of the hardest parts of living through the pandemic has been a disconnect from the ways we usually get those needs met. Friends and family have had to social distance. Events and celebrations were canceled. I met with the sisters in my church and we discovered that all of us had been feeling very alone. We felt like no one understood us. Many had felt that maybe church wasn’t the place for them anymore, they were isolated and felt like they didn’t belong.

I watched as everyone drew a huge sigh of relief to discover that they weren’t alone. They hadn’t been the only one person thinking these crazy thoughts. They weren’t the only one struggling to find a way to meet these needs. Our hearts ached as we listened to our sisters tell their stories that we didn’t know were hiding beneath their pasted on smiles.

So we made a plan.

It’s just in its beginning stages. But we realized that somehow, some way, it was vital that each of us felt heard, seen, and known. We made plans and commitments, both individually and as a group, to do even just one percent better at reaching out to each other and checking in. Because if we all did one percent better, that one percent multiplies like compound interest.

It is a couple weeks later and I have reached out to a few women who were on my mind. Nothing earth shattering has happened, but they now know that someone, somewhere was thinking about them, and if that helps them feel even a little less alone, I have succeeded.

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.”

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.