Autism Archives - An Ordinary Mom's Musings

Autism

An Ordinary Mom's Musings > Autism

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.

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.

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…

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.”

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.

Feeling like a fraud

“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.”
Read more…

Love or Hate the Autism Puzzle Piece?

Recently I posted this picture to social media. I was thrilled to find two of these wreaths at my son’s high school on the entrance doors. I appreciated that someone in the school would care enough to make sure this message was displayed to the minority of students in the building who experience autism. But also to bring awareness to all the neurotypical students.

I asked my son if he had noticed the big wreaths on the doors. He doesn’t always notice things right in front of his face. He hadn’t. But he enthusiastically told me about posters he had seen on the hallway walls that were about autism that he really liked. It may not seem like a big thing to most people, but for him, and to me, it meant that he was being seen and heard.

When I posted this picture on my personal Facebook page, a friend asked what I thought about the puzzle piece debate with autism.

For those of you who aren’t aware, a puzzle piece has been used to represent autism. This puzzle piece was made into a logo by Autism Speaks, an organization that many people with autism have strong feelings against. A puzzle piece signifies that a piece of the puzzle to unlock the autism mystery is missing. A puzzle piece is also used for other brain-related diagnoses like Alzheimer’s. The autism puzzle piece is usually multi-colored, whereas the Alzheimer’s puzzle piece is blue.

Some in the autism community who have autism themselves, object to the use of a puzzle piece. They feel they have no pieces missing. They feel they are whole and complete. This also usually ties in with their objection to finding a “cure” for autism. This view of the puzzle piece it should be noted is not held by all of the autism community, however. I recently read a few posts of people with autism responding to this controversy. Some feel like getting the diagnosis of autism caused the last piece to fall into place. Others agreed with there being a missing piece. The opinions seemed to be pretty evenly divided.

Where do I stand on the subject of a puzzle piece representing autism?

My first thought, is that my life is consumed with so many other things, I’m not that worried about whether a puzzzle piece should or should not represent something.

But my real thoughts on the matter?

For those with severe autism, I think that a puzzle piece or a key makes an excellent representation of the issue. We want to find the missing piece. The world needs to unlock the mystery to figure out how to better help these individuals more fully participate in life, in whatever manner they choose. We want them to be able to communicate, stop self-harming, and enable them to live to their full potential. But right now, we don’t have these answers.

For those who have milder autism, those who would have been diagnosed as having Aspbergers in the previous DSM, I think that the puzzle piece doesn’t apply as well. There is nothing wrong with neurodiversity. People with autism, think and process things differently. Yet they have made amazing contributions to humankind. What more could we want from them?

Where do you stand on the puzzle piece debate? What are your thoughts?