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My Son’s Not Graduating This Year, Be Gentle

The journey of a special needs parent is both stunningly beautiful and utterly heartbreaking. Often with one coming closely on the heels of the other or at the same time.

I have made my peace that our parenting journey doesn’t look like everyone else’s.

But it doesn’t mean this year is an easy one.

Be gentle with me.

This year my son should be in his senior year of high school with senior pictures, parties, and all the fun senior things to look forward to. It should be a year of celebration.

But our year isn’t going to look like that. Be gentle with me.

Instead, he started 10th grade over again because he didn’t quite have enough credits last year completed to finish it. He was already behind, but he was one point away from being able to pass his Pre-Algebra class after taking the class for the 4th time. The good news is that we switched tutors to one who specializes in learning difficulties and after taking it for a 5th time, he passed with an A.

We tried to get him a summer job last summer to start edging him into the adult world. But that didn’t happen between state funding being cut so they couldn’t do the job placement program we had been working toward, and mom only having spare minutes here and there to help him learn how to fill out applications. He got a call back from one, but when he called them and spoke to them, they brushed him off.

I have learned that I need to work at his pace, and his pace isn’t being a graduating senior this year. The fact that he has made it this far despite literally sleeping through his entire middle school experience is honestly a miracle.

But it doesn’t mean that I won’t be grieving what could have been this year.

Be gentle with me.

When I see the senior pictures, when I see the graduation invitations, my heart is going to hurt. He won’t be leaving for college in the fall or getting his first apartment.

Be gentle with me.

I’ll be over here cheering him on. Cheering that he FINALLY passed his pre-algebra class. Cheering because he finally had a semester where he passed every single class! Cheering he made it to 11th grade mid-year. Cheering that if he continues he should (fingers crossed) graduate next year.

Our journey isn’t the typical one, but it will make the celebration all the sweeter once it gets here.

*This previously appeared on Her View From Home.

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.

You Never Thought You’d Deal With Truancy

“Having a special needs child often means that our kids miss a lot of school. So to prevent entanglements with the truancy officer, learn from my experiences and make sure you get every single doctor’s note turned in.”
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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…