Author: Mara

My son, Kai, who is seven years-old and has special needs, recently switched a word he has been using. Kai has been on the cusp of communication for the last two years after at least FIVE YEARS of speech therapy. We have a lock on the refrigerator after an “applesauce incident.” Before, he would either gesture to the refrigerator to show he wanted it “open,” or he would use the word, with a mangled presentation that was probably only clear to us. We, however, were overjoyed that he was communicating at all and so thrilled when he recently upgraded. Now he pulls you to the refrigerator and more often than not will say, “door.”

And when I share this story with people, someone will invariably say, “It’s the little things that make us happy, isn’t it?”

I smile and agree. But inside me, I feel frustrated.

How about this? My son is seven (seven!) and has been sitting on the potty at school daily doing nothing for YEARS. Therefore, considering that his older sister in nine, I have been CHANGING DIAPERS FOR NINE YEARS. The other day, he sat down on the potty and peed. On the floor. You would think our family had just won the lottery, we were so excited.

So I shared this story with others. And someone said, “Gosh, the littlest things make us so happy, don’t they?” Sure. I smiled. Are you sensing a pattern?

My son has discovered light switches. It took him seven years to find them. And now, he loves to turn them on and off. He has discovered cause and effect – if he flips the switch up, the light goes on! If he flips the switch down, the light goes off! Once he figured that out, he wanted to test every switch in the house repeatedly to see if it will happen every single time. Guess what? This is how kids explore science in the early stages! We laugh with joy as we live in a disco world where you never know if the lights will go out when we are brushing our teeth. My son is exhibiting a developmental milestone after having missed the cues for SEVEN YEARS that were right there, in every room! This is amazing!

Of course, I shared this story with others! We are so excited! Can you guess what someone said? Yup. “It’s the little things.”

I have a secret. When someone says that, there is a teeny, tiny piece of me that wants to punch them. Please don’t tell anyone.

I’m wrong. I know that they are showing support in their way. They mean it as an agreement that it is something to take joy from and celebrate.

But Kai’s achievements and the achievements of all folks with special needs are FAR from “little things.”

Want another example? Kai has had issues with eating for years. And when he was maybe two years old, we started a terrifying year of daily choking. He had graduated, finally, to pureed baby food after intense feeding therapy (yup, that’s a thing). And now, he was choking on it. EVERY SINGLE DAY. To the point that he needed intervention at every single meal. As in, if we didn’t help him get the food out of his throat he was going to suffocate and die.

My husband, who can do most anything, couldn’t bring himself to do the hook method (which was the procedure at the time). He was terrified that it wouldn’t be successful and that our son would die. So it fell to me. Oddly, I felt very calm and proficient at it. Even so, can you imagine the stress levels of two parents who daily, for an entire year, had to rescue their son from choking to death at least three times a day? And then, he finally moved on to not choking. On his third birthday, for the first time ever, LONG after other kids had their first taste, my son ate the first small piece of cake he had ever had in his life and HE DID NOT CHOKE. And let me tell you, ya’ll, I cried, I was so happy.

Cause, you know, it’s the LITTLE THINGS. (Of course someone said it. You knew that was coming, didn’t you?)

And, just for the record, it is not just folks with typical kids that say this to me. Special needs teachers and caregivers have said it, too. It BLOWS MY MIND. Also, for the record, my husband rightly pointed out that I use the phrase, “Little things make me happy,” all the time. But, when I say this, I am not referring to Kai.

For me, the little things that make me happy include but are not limited to:

• a freshly brewed cup of really good coffee
• a shower that has hot water all the way through to the end (a rare luxury when you have a big family)
• a really good book
• hearing something that makes me laugh
• enjoying the company of a friend that I really like

These are the simple things, the little things, the good things that make daily life a little sweeter.

When my son, who by the way, is our shining star, accomplishes something that took months to years in the making, with hours and hours of therapy and hard work and failures and restarts and therapist changes and appointments and practice, it is NOT A LITTLE THING.

It is a really, really big thing.

Is this an issue of semantics? Probably. But just like hearing nails on a blackboard (now, THERE’S an example that highlights my age), my reaction is instantaneous. I smile at the person while, inwardly, I wince.

I know that there are differences in communication and word choice. And when people with different styles come together, sometimes miscommunication occurs, so it is really, really important that people consider not just the words but the meaning behind it. What is the intention? These people are AGREEING with me. They really are.

I repeat this to myself, in my head, as I smile and nod in agreement in return.

I will not punch them. I will not punch them. I will not punch them.

Okay, okay. I’ll be good.

What phrases annoy the heck out of you in relation to your child with special needs? Please share in the comments below.

I married a man who had custody of his three kids. I went from no kids to three kids, full time. When I showed up they were 12, 10 and 6. Now they are 25, 23 and 19.

We then had two more. My nine year-old girl is neurotypical. My seven year-old son, Kai, is special needs.

When I was pregnant with Kai, my oldest daughter, Autum, and I were pregnant at the same time.

This was great fun (and caused my husband to joke about feeling like Father of the Bride). I had a pregnancy partner. We talked about what worked for nausea and what didn’t. We shopped for maternity clothes and swapped them. We were both pregnant with boys. And then, Autum left the pregnancy club and had my grandson, Jacob. About ten weeks later, Jacob’s uncle, Kai, was born. Both of these births were seemingly normal and uneventful from a medical perspective. We had two beautiful boys. I remember one time when we were all on the front porch of our house and someone asked us if the boys were twins. We had so much fun explaining that they were, in fact, uncle and nephew.

Jacob starting doing things. He sat up. He moved on from a bottle to soft foods to table foods. He started walking.

Kai didn’t.

Over time, as Kai began to fail his milestone checkups, the gap began to widen. They started to look remarkably different in age even though they were just ten weeks apart. Because Kai still seemed like a baby. And Jacob was evolving into a little boy.

Fast forward to now. The boys are seven. Over the years, Jacob has pursued Kai relentlessly to be friends and play together. Kai, more often than not, brushes him off. Not because he doesn’t love Jacob. Kai loves Jacob and feels very comfortable with him. It’s just that Kai is still developmentally in the 12-36 months range and so is still a side-by-side kind of guy. He likes having people nearby but doesn’t necessarily want to interact.

Over time, Jacob has figured Kai out. Because both of Jacob’s parents work, he takes the bus to our house after school, where he hangs out with us until Mom or Dad comes to pick him up. Jacob and my daughter get off their school bus together. I help Kai get off of his bus, which is different because he attends an all special needs campus in another town (no inclusion for him and this is the correct placement). When Kai walks up the path to our front door, Jacob often holds open the door for him and says, “Welcome back, Kai, I am so glad that you are here.” Kai smiles and walks through the doorway. Sometimes Jacob will share a banana with Kai, holding it so that Kai can lean over to take a bite. And Kai lets him do this. If Kai is doing something we consider to not be safe, Jacob will come tell me. He’s a good helper like that.

At the beginning this was really, really hard for me. As a former teacher, I am trained to see developmental and academic differences by comparing a certain student to the hundreds that I have seen over the years. The other students are called, “typical peers.” After a while in teaching, you get to know the wide range of what is considered normal or average behaviors and abilities. This skill highlights what are called, “red flags.” When you see a student who looks different, a red flag goes up in your mind. It is a caution to investigate further. To make sure that the student gets everything that they need to be successful. Maybe more support. Maybe special arrangements. Maybe testing, etc.

So, because I am trained to see it, after I became aware that Kai was struggling developmentally, for a while, it was all that I saw. And the comparisons with Jacob began in my mind.

When I would see Jacob playing with my daughter, I would think, that is how Kai should have been. When I saw Jacob starting school on a typical time frame with no intervention, I would be happy for him and sad for myself. Because Kai wasn’t. When Jacob was able to verbally request things, I was thrilled for him. And sad for Kai. And so it went.

But the thing that I came to realize after a while is that Kai is not bothered by this at all.

If there was ever a person who was completely himself, with solid likes and dislikes, preferences and a devilish sense of humor, it is Kai. Happy-go-lucky, happy to be here, not a care in the world other than having his basic needs met; Kai is totally himself.

Who am I to say that it should be different?

There is so much PRESSURE on special needs parents and caregivers. Some of it comes from our families, some from society, the school system and, ultimately, the vision that all children should follow a similar path. Developmental milestones that are checked off in the first year of life, potty training before starting school, pre-K at three or four years old, Kindergarten with its list of standards that must be taught in public school whether your child is really developmentally ready to learn them or not. The list just keeps going.

I fell into the trap, at least in my mind. It made me feel sad. Mournful. It made me feel like I produced a child that failed. Although I was wildly in love with Kai, it was always tinged with sadness.

What an absolute waste of time.

The second, and I mean THE SECOND that I figured out that all of this pressure was in my head and that I wasn’t required to feel this way, I was able to breathe. Because, guess what? IT IS ALL IN YOUR HEAD. Your child does not have to be typical. Your child does not have to progress at the same rate as other children.

Your child has the right to be exactly who they are.

Kai is exactly who he is supposed to be. Who I thought he would be is a fantasy. Comparing his development to Jacob’s is ridiculous. They are completely different people. Comparing real Kai to fantasy Kai is a recipe for disaster. And so not fair to real Kai.

Because fantasy Kai doesn’t exist. And, I have realized, I don’t want him to.

I am not saying I never feel a twinge anymore when I see Jacob do things that Kai is not developmentally ready to do and maybe never will be. But, I have to remind myself, that when I do I am not being fair to Jacob, Kai or myself. And I have learned to let it go and enjoy my son.

My real son.

By the way, Kai recently sat on the potty at the age of seven and peed on the floor for the first time. This event showed that he understood the concept of what he was supposed to do when sitting on the potty. This was a wildly exciting event in our family. And it makes me smile when I think about it for more than one reason. I smile because although it looks different when Kai does it than when Jacob does it, this is something that they sometimes have in common.

You know, it’s that seven year-old boy thing.

I think this and I smile. And then I laugh.

How have you overcome the fantasy of what your child may have been to enjoy who your child really is? Please share in the comments below.

I was at a karate tournament in East Texas when I spotted Molli. It was hard not to take notice of her. First of all, she is stunningly beautiful. But, secondly, when she first caught my eye, it was because she was sparring, sitting in a wheelchair. And winning.

She took my breath away. Molli was punching, using both hands, and KILLING it. In a special needs world where we don’t always have enough role models, there she was.

Molli was born with Spina Bifida (L2, myelomeningocele). Spina bifida is a congenital defect of the spine. Part of the spinal cord is exposed through a gap in the backbone. Depending on the severity, it can cause paralysis of the lower limbs and, sometimes, mental handicap. The most common kind, Myelomeningocele, is a neural tube defect where the bones in the spine do not completely form. This is what Molli has. But when you meet her, it is not the first thing, or maybe even the fifth thing that you notice about her.

This is a nine year old with a tremendous appetite for enjoying life. Recently achieving her first medal in karate is only the latest in her line of things she enjoys. Molli has taken dance lessons since the age of three. She loves video games, Broadway musicals and football. She is also a very enthusiastic traveler, earning the nickname, “Road Dawg,” from her mother, Mitzi.

In fact, Mitzi says that Molli has never even questioned her disability. Molli goes for whatever activity that interests her, adapting it to her ability level.

Mitzi found out about the Spina Bifida through an ultrasound during her pregnancy. She was told repeatedly that Molli may be mentally challenged. That she might be paralyzed. That even though Mitzi might feel her kicking and see her legs moving on the ultrasound screen, it didn’t mean anything. It was a terrifying experience.

No mother imagines having a child with disabilities when they become pregnant. Little did Mitzi know that she was about to meet her best friend and begin an incredible journey together.

In the NICU, Molli’s foot started moving. She figured out how to crawl at the age of two. By the age of three, Molli began to be able to bear weight on her legs, using a walker. And then, a few months later, she was taking her first steps. From the age of four, Molli has been able to walk using forearm crutches, which she is able to do to this day.

While things may look a little different when Molli does them, in a lot of ways she is a typical kid. She loves to eat chimichangas, cheese and her most favorite – Hot Pockets. She is an avid fan of the WWE, Ridiculousness and the New England Patriots. Disney and Nickelodeon keep her entertained. And, like a typical nine year old girl, her stuffed animals, Gronk and Lilo, and her American Girl dolls make Molli happy.

This is a girl who does not sit on the sidelines or stay in the shadows. We need more role models like Molli. They are out there. Take a look around. They are not hard to find because they shine so brightly.

If you are just beginning your special needs life journey and you are frightened, just look at Molli. Keep your eyes on the prize. Your child, no matter what accomodations they may need, can shine like this.

Want to comfort and offer a role model to special needs parents who are at the beginning? Please share your amazing stories about your child with special needs in the comments below.

Every single sock that I own is exactly the same. OK, that’s not entirely true. I have two pairs of trouser socks for business meetings that I never wear anymore since I became a stay at home mom. I keep thinking that if I get rid of them, a meeting will come along that I would need to wear them to. And, since I never want to attend a meeting again where I would have to wear trouser socks, by owning them, I feel as though I am somehow warding those meetings off.

But I digress.

Coming back to the point – ALMOST all of my socks are exactly the same. They are black ankle socks. They are the same brand. I probably own 15 or 20 pairs but I never, ever have to pair them. Because if they are exactly the same, why bother? I can just grab ANY two socks and I have a matching pair.

Imagine a life where you never have to match your socks again. Think of the minutes you would save over the course of your lifetime, never having to wonder if there really is a sock monster eating your socks in the dryer. Sounds good, doesn’t it?

This is called streamlining. It works. And you should try it. Here’s why.

When you are living the special needs life it is so easy to get bogged down in details. Getting ready to leave the house can be like packing for a long trip to a vacation spot that you never quite get to. My son, Kai, just turned seven and it still feels this way. Kai has cognitive disabilities but needs no physical assistive accessories. Still, we have a diaper bag. In the diaper bag we usually have diapers, wipes, a changing towel (because we have long outgrown changing tables), baby food, spoons, a bowl, a sippy cup, two changes of clothes, cookies, two tablets and a hot spot, grocery bags for soiled diapers and clothes, any medications Kai may need and usually more. Now, if your child has physical disabilities, on top of this could be added a wheelchair, assistive technology for communication, crutches, jtube accessories and many, many more things. Parents of typical children fondly remember how much stuff they packed when their kids were newborns. To special needs parents and caregivers, a newborn diaper bag seems like a cakewalk.

Assuming that we finally have it all together and our child is ready to leave the house, the bottom line is that we still have to get ourselves ready, too. Why would I want to search for two socks that match?

Think this sock thing is ridiculous? Let’s try another example.

How many times a day does your child with special needs have accidents and need a change of clothes? Oh, but wait, the bedding got wet, too. And then at lunch, food was dropped all over their shirt (if you are lucky for that meal, it’s just the shirt). And you grabbed a towel to catch a spill before it went even further. All of this stuff needs to be washed.

Are you still separating whites and colors? Doing different loads in hot, warm, cold, delicate, regular? Guess what? I’m not. EVERYTHING gets washed in cold (unless it’s a really, really gross mess). And, EVERYTHING gets washed together. Colors and whites are united in a vat of lovely cold water. Got delicates? Wash ALL of it on the delicate cycle. It comes out exactly the same. I promise.

Streamline. Simplify. Make the process easier. Go with your natural hair texture most of the time. That’s right, put the flat iron down. Want to work out? Save money and time by doing it outside or at home online. You never have to worry about gym hours or gym bills. Are you the cook in the house? Make a big pot of some type of grain (rice, pasta, etc.) and keep it in the fridge for several days. It’s a quick way to make meals, just change up add-ons and sauce. Doing Keto? Keep the concept, switch the grain to a batch of chicken. Keep it easy. Making pancakes for your kid on Sunday morning? Make extra, slide into Ziplock bags with wax paper in between and you have more meals for the week.

Make your morning routine more simple by laying out everything the night before (yes, I am becoming my mother, but that’s not a bad thing). Then in the morning, instead of spending a few extra minutes trying to find things, you can spend a few extra minutes lingering over coffee. Or, you know, spending time with your kid.

Speaking of your kid, you know that diaper bag I talked about earlier? How many times have you left the house with what you thought was everything only to discover that one really important thing was not replaced the last time it was used? MAKE A CHECKLIST. It is impossible to keep everything you need to remember in your brain when living the special needs life. The diaper bag checklist makes the process faster, easier and complete. When you go to replenish supplies in the diaper bag, look at the list. Go down it and check that everything on the list is in the bag. Done. No brain gymnastics required.

The above ideas are just that. Streamlining will look different for everyone because everyone is different. But what we all have in common as special needs caregivers is being on overload. All of the time. So, streamline. Simplify as much as you can. Make the process as easy as possible.

You deserve easy.

How do you streamline while living the special needs life? Please share in the comments below.

Sometimes when what you are doing isn’t working, it can be so hard to change approaches. My son, Kai, who recently turned seven and is special needs with multiple diagnoses, has known all of his letters and sounds for over three years. He learned them at home in the bathtub. If you are interested in checking out this approach, you can read about it here:

Teaching Letters and Sounds to A Child With Special Needs – When Traditional Strategies Don’t Work

I was a general education teacher for 15 years and became special education certified after I stopped working and became a stay at home mom. I taught the primary grades, lots of first grade and several years teaching ESL pre-K, which was my favorite. I also spent two years teaching adult ESL classes. So I have an idea about how to present learning how to read in a logical, scaffolding approach (starting at the beginning and building on itself).

Usually the next step after learning letters and sounds is to learn some sight words, which is whole language learning. Whole language learning is when you memorize the words so that when you see them, you have been told what they say and you remember, so that is the word that you read. Also around this time, word families tend to be introduced. This involves some sounding out and memorizing endings. So if you can read “bed,” you will also be able to read, “Ted, led, fed.” The child is taught the -ed ending and places a beginning sound in front of it, blending it together to form a word.

So since these are the next steps, this is what we, the school and Kai’s dad and I, decided should be in his goals in his IEP (individualized education program). Makes sense, right?

It’s not working.

Kai is utterly uninterested in taking this next step in learning how to read. Sight words are abstract and meaningless (it, is, to, the – not too meaningful, huh?). He doesn’t want to blend. He’s not interested in word families. In fact, the whole thing kind of pisses him off (hmm… where could this stubborness and strong-headed behavior be coming from???). My son is my most challenging student to date. He doesn’t want to follow the path that I took my students down successfully for fifteen years.

Guess what? The person who has to make the change is me.

How many times in life do we have to bang our heads into walls before we realize that we are going to get the same results the next time? The school and I have been banging our heads into walls for about 7 months now, with no progress to show for it. Or, alternatively, we could say that we have successfully discovered multiple approaches over time that absolutely do not work for Kai at this point. I like this perspective better. But, however we look at it, folks, it ain’t working. So that’s a wrap.

Does this mean that I am giving up on teaching Kai how to read? Not a chance.

It’s time to think outside the box. I have never been a huge fan of the box, anyway, so why not step outside the norm and try something new?

We are going to start with NOUNS. I made this decision and told the school that this was the new plan. So they jumped on board. Did you know that you could do that? You can!

Parents and caregivers reading this may not be too impressed with that statement, but you teachers know that this is an unusual place to start. We are going to teach Kai to read using whole language learning, picture support and nouns. This means that Kai will see a word, see a picture of the word and be told what the word says. We are starting with pictures of our family. So there will be a picture of me with the word Mom. A picture of his niece Riley with her name on it. And so on, and so forth. After family names we will show him pictures of familiar objects at home. I took pictures of his bed, cup, bowl, and a gallon of milk. The school will present Kai with the pictures, show him the words and tell him what they say.

Eventually, the pictures will be taken away and Kai will be shown the words by themselves. If he can read them, he has learned to read using whole language learning.

If you stopped me here to say that there is a complete disconnect from him learning his letters and sounds to learning to read through whole language learning, I would say that you are absolutely right. The downside to whole language learning on its own is that if you come to a word that you don’t know, you have no way to figure out what the word is. You need to be able to sound out a word and blend it to solve this problem.

The flip side? Since we are making no progress in this area right now, I would rather that Kai could read some words through whole language learning than none at all. It’s a compromise. And it’s one I’m willing to make. For now.

We will absolutely return to sight words, word families, phonics (sounding out through visuals) and phonemic awareness (identifying, hearing and working with units of sound). Maybe Kai will be willing to do it later on.

Or maybe he won’t.

By being flexible and willing to abandon tradition in favor of what works for my son in the here and now, we can help him to progress in his own time.

I urge you when you hit a wall in the progress of your child with special needs to consider changing your approach. THIS IS NOT A FAILURE. It is a smart strategy to use for everything from their education to their therapies to their behavior modification plans. You are not changing the goal – growth for your child. You are exchanging what is not working for something that might work. And, if the new plan doesn’t work, guess what? It’s time to try a third plan. How will you know when it’s time to stop changing strategies? Something will work. And then you stick with it until it stops working. And then you change again.

Stuck for ideas? That’s what all of these teachers, therapists, assistants, coaches get paid for. Ask them to help. Have a meeting. Brainstorm.

And bring those folks some chocolate. They like that.

Have you ever changed strategies when something wasn’t working for your child with special needs and achieved success? Please share in the comments below.

I think that when I was younger I had a vision of me being who I was throughout the rest of my life. I mean, I knew that I would change over time but I never thought that there would be life events that broke who I was into before and after.

There have been several events that have done this. Getting married was a life event and certainly warrants a before and after but I didn’t feel that my personality changed drastically. What really changed me were three different specific events. One was the diagnosis of Alzheimer’s disease and subsequent suicide of my mother, after two years of caring for her. Another was my son being diagnosed with a myriad of special needs. And the third one was having a very sick husband. In fact, as I type this, I am sitting in a hospital cafeteria awaiting tests for my husband, to find out if he has had a major relapse. He has been doing so much better since last year, but some tests came back that were a cause for concern. So here we are at the hospital. Again.

Having had these three events come in a span of only a couple of years brought me to a dark, black and white, joyless place. I felt like I was never going to be happy again. How could I? I lost my mother, my best friend, to a vicious disease where by the end she didn’t even know who I was. My son was never going to be “normal,” (I had no idea of the joys of raising a son with special needs yet, it was quite the gift in disguise). And my husband almost died.

Bleak, indeed.

I stopped taking care of myself. My needs, wants, joys, desires, pleasures, were the last thing that I had time to focus on. It seemed selfish to think, “What about me?” So I didn’t. And that backfired in a big way.

Self care when you are a caregiver is counter intuitive. My intuition was to always put those I love who are struggling first. It made perfect sense to me. The ones who needed the most care, got it. And I, well, I wasn’t sick, I didn’t have a diagnosis that needed addressing, so I was last.

The problem with this was that there is only so much energy and effort one can give without replenishing the source. I didn’t know this, then, not really. I mean, I knew it intellectually. But I’m stubborn. So I was JUST FINE. Until I wasn’t.

I functioned on empty for a long time and it felt really bad.

After my mom died, after my son got into therapy, after my husband mostly recovered, after we moved to be closer to family for help when we needed it, I finally had time to take a breath. I didn’t like how I felt. I didn’t like what I saw in the mirror. I didn’t laugh anymore. I seemed incapable of having fun. And I was stuck like this for a long time.

I am finally, this past twelve months, coming out of it. I invested some serious time into some serious self care. I began to walk daily, at first only fifteen minutes a day but now I have work up to 80 minutes most days. I forced myself to read jokes on the internet to make me smile. I started projects that I had long ago put down. I completely cut out alcohol (although I have next to no tolerance so we are talking about maybe 2 ounces a day but that is a lot for me). I tried to schedule things that brought me joy into my day. Added in a small amount of yoga every day. Started listening to music again. I didn’t do this all at the same time. It was gradual, a progression.

I have just met the new me. And I am liking who I’ve met.

I recently came across a concept called post-traumatic growth. When I started reading about it, it resonated with me immediately. It describes what happens when a terrible, harsh event occurs in your life that triggers growth afterwards for you. This is exactly what happened to me, although it took several years for the growth to occur.

I like myself so much better now than I did before. I’m not sure how I feel about that.

I am not happy that any of these events occurred (this is even more complex with feelings about my son, whom I adore, just the way he is, but you get it, right?). But I am happy with how the changes have affected me in the end. And the changes couldn’t have happened without these events. So my growth is a positive thing that came out of a series of negative, difficult, emotionally draining events.

How weird is that?

Apparently, not so weird. Post-traumatic growth is more common than post-traumatic stress disorder (PTSD). Take a look at this article to read more about that:

https://youwillbearwitness.com/2018/09/04/strategies-to-turn-trauma-into-strength/

I certainly am not suggesting that my trauma is anything close to what the army surgeon experienced when captured in battle, as described in the article above. But as my mother always said, just because the person next to you has two broken legs doesn’t mean your one broken leg doesn’t hurt. My experiences were traumatic, for me.

And, like this article states, it doesn’t mean that a traumatic event is a positive thing. It isn’t. But people are reporting in large numbers that they are experiencing growth after traumatic events. For me, a myriad of things have changed and instilled growth in me, including:

• I have redefined what it means to be successful, for myself.
• My level of patience for things that are important is soaring.
• My ability to let things go that really don’t matter has drastically improved.
• The experience of being forced to adapt to change has led to easier adaptation with other things.
• I have refocused on self care to go the distance with special emphasis on practices to increase my own longevity to be here for as long as possible for my son.
• I have faced the fear of great loss, which I thought I wouldn’t be able to live through, and have come out on the other side. I am sad, but stronger.
• I enjoy who I am more. I don’t feel the need to impress anyone or apologize for what I am, or what I’m not. I have seen what is important and this just isn’t.
• I have learned the hard way that self care is the only way to be able to be a caregiver. If I don’t take care of me first, I can’t take care of anyone else. It is like when you are on an airplane and they tell you to place your own oxygen mask on first before helping anyone else. You can’t help others if you have no oxygen. (This one is SO HARD for me!)

There’s more. But what is the most important takeaway is that I got through it and I CAME OUT ON THE OTHER SIDE. I came out better. I came out stronger. I genuinely like myself more.

If you have to go through something hellish, at least you can know that you will come out on the other side, most likely stronger and better. You may not feel like you will come out on the other side right now, but you will. I promise.

Have you experienced Post-Traumatic Growth? Please share in the comments below.

They say that grace is irrational. That it is love and care and kindness that you give freely when it is not earned or even necessarily deserved. It is a gift that you give to someone because you want them to have it, not because they did something to get it. Grace is a choice. Both the Hebrew and Greek meaning of Grace is “extension toward.”

Intention is everything. Why do we do the things that we do? The exact same act has completely different meaning when you add in intention.

When you operate in a state of grace, you give for the sake of giving. The benefits of this are TREMENDOUS. Greater happiness, improved health, connection, expressing and instilling gratitude, embracing and spreading positivity, uplifted mood (depression relief), stress reduction and much, much more.

As special needs caregivers, we often struggle to even notice others around us, let alone give to them in love and grace. And we are missing out. It can be as simple as being quick to offer a smile or a kind word. Holding a door that you were going through, anyway, for the next person.

In fact, have you ever held a door open for someone as an act of grace and been annoyed when they didn’t say thank you? It is MORE OF AN ACT OF GRACE to be able to be happy that you did it even though they didn’t thank you. Being thanked is lovely, of course. But we don’t hold the door open for someone to be thanked. We hold the door open as an act of goodwill, sent to the next person, whether or not they deserve it. THAT is grace.

Whether or not you believe in God, you can believe in grace. It is something that is emotionally tangible – it’s such a strong feeling that you can almost touch it. You can certainly feel its presence.

On this blog, the tagline at the top says, “Parenting with love and grace.” We offer love and grace to our children, unconditionally. From birth. They didn’t do anything to earn it other than showing up. Yet we love them, and especially our children with special needs, with a ferocity that has not been earned. Just because they are them. That is grace.

It is a time in our lives when being quick to smile maybe doesn’t come easy. There is a lot on our plates. We are under a sometimes tremendous amount of pressure to keep everything together. We have work, family care, special needs child care, possibly home school and therapy appointments. We need extra things and they cost money we may or may not have. The old ways we spent time relaxing and enjoying most likely don’t work anymore but we haven’t yet carved out the time in the whirlwind of living the special needs life to figure out the new ways. We put ourselves last.

I urge you to consider the concept of grace. Weaving it into your day costs nothing. You do it when you think of it. You can do it whether or not you got any sleep and whether or not your child just had a two hour meltdown because you changed laundry detergent and the smell is different in their clothes. In passing, offer up kindness. When making a purchase at a store, ask how the cashier’s day is going and really listen to the answer. When you think of it, smile and say hi in passing on the street if this is culturally acceptable where you live (I’m thinking of you, New Yorkers, maybe not for you, it’s not your cultural way).

After you try it, I wouldn’t be surprised at all if you experience injections of joyful moments in your day that you weren’t having before. When you give grace, you receive joy.

And what special needs caregiver couldn’t use a little more of that?

How have you shown grace to others? Please share in the comments below.

I admit it. I lost it. I had great joy and enthusiasm for life. I liked to try new things. I enjoyed experiencing different cultures and languages (for which I have no natural ability but have a secret fantasy that I can speak fifty of, fluently). I liked to laugh. I played music but didn’t call myself a musician and I made art but didn’t call myself an artist. Not having the labels was very freeing. I created and didn’t worry about the end product because, hey, I was no artist/musician, so what did you expect? I made crafts. I sang songs in my fabulous, off-key voice. And, I played.

Then, a couple of things happened that made it feel like the huge hand of God reached down from the sky and smacked me so hard across the face that I fell down (and, no, I don’t think that’s what happened and, no, I’m not mad at God. I’m just saying, it felt that huge). My mother was diagnosed with Alzheimer’s disease and my son was diagnosed with special needs. At almost the same time. If you want to read about that, here’s a link to that post:

Caught Between Two Loves: Being A Special Needs Parent When Your Own Parent Is Dying

But that’s not what I want to talk about here. What I want to talk about is coming back from it. I have read and heard many times that it can take a whole year or two to recover from traumatic events.

Ya’ll, it took me five. Five years. And I would still say that I am in the process of recovering. But it’s finally getting significantly better.

Here’s what I know about myself. I have anxiety disorder. I am also very sensitive. I experience both pleasure and pain VERY strongly. I am highly empathetic and sympathetic. And, in a lot of ways, I didn’t WANT to recover. Because it meant letting go of my mother when she passed away. And I was holding on SO TIGHT. She was my best friend. And somehow, becoming OK with losing her seemed wrong to me.

It was similar with my son being diagnosed with special needs. I was holding on TIGHTLY to all kinds of preconceived notions about what having a child should mean and being a mother should mean. And if I let go, and let it be, what did it say about me? I wasn’t even worried about what other people thought about me at this point. I was worried about what I thought of myself. What did it say about me if I let go of what I thought my son should have been and should still become? Less so, but still significant, I didn’t want to let go of the fact that my son would not progress at the same rate as his peers. I then somehow became OK with the diagnoses, but I was hellbent on making his progress swift.

Can you say J O Y K I L L E R???????

I stopped laughing. I stopped smiling. I was quick to criticize. I had next to no patience with people who were not onboard my with caregiving agenda. I had less patience than I should have had with people who WERE on board with my caregiving agenda. I stopped taking care of myself. I worked and I cared for my mother and I cared for my son and I cared for the rest of my family, to varying degrees of success and non-success. And I caught a little sleep. And this went on repeat. For a very, very long time.

And here’s the thing. When my mother ended up dying and my son ended up in Early Childhood Intervention and after we were homeless for a few months (that’s a whole other post) and after my husband got a very severe illness that required endless months of struggle and vomiting and hospitalization and occupying the couch and after we moved YET AGAIN, after all of that was over, guess what?

My joy did not return.

Joie De Vivre. The exuberant enjoyment of life. Nowhere to be found.

I couldn’t recover. I realized that I wasn’t coming back. Not the old me. And a new, different joyful me was not emerging. I was stuck.

I WAS STUCK.

Being stuck sucks.

I started to realize that it wasn’t getting any better. I was tired of not feeling happy. And I kept thinking, if happiness would just come my way, I could feel it again. I would hold onto it tightly, wrap my hand around it, close my fist and just… hang… on.

And it took a really, really long time of it not working before I figured out why. A few reasons why.

The first is that I have discovered that the harder you close your fist around happiness, the faster it dissolves. If you can imagine a wish flower (ragweed, but I always called it a wish flower because you wish and then blow), it sits there, on its stem, beautifully rounded. It is something that you happen upon. And you can enjoy its presence, pluck it and hold it in your hand. But if you decide to keep it and you wrap your hand around it and close it in a tight fist, what happens? It changes. It becomes crushed. It is no longer what you were trying so hard to hold onto. Like the wish flower, happiness IS something that you can stumble upon, no question. And enjoy for a bit. And then you have to let it go.

You can also go searching for other wish flowers. And you may or may not be able to find them. Sometimes you will and sometimes you won’t.

I liken this to things that make me happy, that life presents, that are beyond my control.

My problem was that I was waiting for life to present daily happiness. And I couldn’t find it. I couldn’t find the wish flowers.

Happiness and things that bring me pleasure cannot always be in the control of other people and outside events. Which brings me to the next reason why I couldn’t find happiness anymore. I stopped creating it. I was so exhausted and stressed out that I lost sight of the simplest type of any self care. When was the last time you scheduled not only self care into your day but something that brings you joy? When this thought finally entered my brain, I couldn’t actually remember. I had no idea when the last time was when I made time to play music or paint or go for a walk or eat something healthy. For myself. By myself. I was too busy trying to manage the life apocalypse I was experiencing and afterwards, I simply forgot how.

If I wanted to continue using the example of the wish flower, I would say that in addition to finding them, you can also plant them. This way you don’t just get one when you stumble upon them. You also get one where you planted it.

Think about this – if a friend calls you up and offers to meet up at your favorite coffeehouse for coffee and a pastry, the joyful event was presented to you. If you decide that today you are going to spend time at the coffeehouse you love, have a hot drink and a treat and read a book that you are excited about reading, you have created some happiness and infused it into your day. It seems like a very small distinction but it’s not. It’s huge. Because in the first example, you have no control over the offer or the plan, it just comes to you (or not). In the second example, it’s all you. You CREATE an opportunity for a happy moment in your day.

You need both. You need to look for unplanned things that you can take joy in and you need to plan for your joy as well.

And, finally, the last thing that I figured out is that you have to not only allow happiness to flow in, you also have to allow it to flow away from you. It has to come and go. You can’t hold onto it. Remember the wish flower? You can’t hold onto the one in your hand forever, so you have to let it go. That’s OK, though, because there will always be a new one in your future.

So, to recap, you are not powerless if you are not able to feel joy right now like you once were. Getting a special needs diagnosis for your child is a huge life event. It’s hard and it can be painful. Even more intensely, when this is combined with other harsh life events, it can feel like you will never experience happiness and joy again.

It’s not true. You will.

When you are ready to feel joie de vivre, exuberant enjoyment of life, again, you will. But if you get stuck, remember that being stuck is not forever. Remember to create joyful moments for yourself. Be open to unexpected happy moments that present themselves to you. And don’t tighten your fist so hard around a happy moment that it disintegrates.

More happiness is on its way.

How do you create more joy in your life? Please share in the comments below.

There is a great debate in the special needs world and in the outer world about words. Names for things. Descriptions about special needs folks. What do they imply? Are they offensive? And there seems to be two camps that exist in their opinions on this topic. There are the people who feel a deep need to use the proper language to say what they mean without offending anyone. And then, there are the people who think that those people are wimpy and need to suck it up and get over it, already.

Well, it seems that Major League Baseball has chosen a side.

Recently, Deputy Commissioner Dan Halem changed the name of the disabled lists to the injured lists. The only thing that was changed was the name. How it works, the amount of days spent on it and everything else is exactly the same. If you would like to peruse a brief article on this topic, here’s a link:

https://www.newsday.com/sports/baseball/mlb-disabled-injured-list-1.27046252?fbclid=IwAR2kz1ZAldTLS_syf5oQAaAttADeB_eVlX-JhPyfHAY6nsEty4EYIpS1Zk0

The article shares that Mr. Halem has rebranded the name, effective immediately, at the suggestion of advocacy groups for the disabled.

Why is this important?

It has to do with evolving lexicon in society. Lexicon is simply the vocabulary of a language for a subject. It can also just be described as the general language one uses.

If you look back at the history of special needs folks in our country, their treatment has radically changed over time, especially in the last 60 years. What was once described as retarded is now described as challenged. Delayed. People who were once described as retards are now folks with special needs, disabilities, people who are differently abled, etc. And our society seems to be, more than not, rallying around these folks and embracing them as valuable members of our society.

Lexicon is important because the words that are used to describe people, especially young people, become their inner voice. Tell someone that they are retarded enough times and they will eventually begin to think of themselves that way. Tell someone that they are special and they will eventually begin to think of themselves that way, too.

The commissioner’s office released this statement on the reasoning behind the change: “The principal concern is that using the term ‘disabled’ for players who are injured supports the misconception that people with disabilities are injured and therefore are not able to participate or compete in sports.”

He said that using the wrong term can support a misconception. But how do we know what the right terms are? Even for me, who has accepted the term special needs enough to include it in the name of my blog, it is a tricky path. Everyone feels a bit differently about descriptive words for special needs folks. The best way that I have found to manage this dilemma is to be aware of those around me and what they prefer. The goal of using terms in conversation is to promote dialogue. It doesn’t do me any good to try to talk to someone only to offend them with my word choice inadvertently and have them shut down.

My intention is to be flexible. My word choice is also flexible. But the only way I know that a term offends someone is if they tell me. I invite you to speak up. Not just to me but to everyone in our community and make your preferences known.

Over time, we will find our way.

I am so happy that Major League Baseball, an iconic organization in our culture, has chosen to be flexible in their terms. While not seeming to be a big deal, it really is.

What words regarding the special needs community are in your lexicon? Please share in the comments below.

My daughter, who is nine years old, began to take karate lessons at the age of six. Although generally neurotypical, she often has anxiety and suffers from attention issues. Last year, after moving from Fort Worth, Texas to a tiny town in the country, she had to start over from scratch, as the style of karate she was studying wasn’t available here. As I have followed her on this journey, I have come to realize how powerful this type of study can be for children.

Moving to the town of Mineola, TX (population 4,719 + the four of us) was an eye-opening experience. My older kids, well, step kids but I’m claiming them, already live here but I don’t know if they were counted in the population. Being a native New Yorker, Texas feels like a different country to me. But East Texas, and Mineola more specifically, is wildly different from how I grew up. The pace is slower, the people are friendly and they love to chat you up. The town has a main street about four blocks long with stores that sell antiques, fudge and accoutrements for worship at the variety of churches available to all that live here or are just passing through. Fashion is about 20 years behind, for the most part. So is hair color and styles. And if they don’t sell it at Wal-Mart, well, then, you just don’t need it.

So, imagine my surprise when we found The Dojo, where they blend a very modern attitude toward folks with special needs with the small town family environment that defines Mineola. Unlike team sports, which for most ends as childhood ends, studying martial arts can be a lifelong journey. It teaches self management, discipline, confidence and respect. If done well, martial arts classes can be adapted to different learning styles using music, rhythm, sensory materials and more.

Although I work from home now, I was a teacher for fifteen years in general education, grades pre-K-2. I have also taught Adult ESL. Then I became special education certified while staying at home with my son, who has special needs and is six years old. So, while I don’t know much about martial arts, I can say that I know good teaching. This place has it in spades.

As I have watched my daughter study Tae Kwon Do (a never ending quest for perfection and art of developing the mind and body to defeat your constant opponent, which is yourself), I have often thought of how such a discipline would affect my son, Kai. Kai is low functioning and has several diagnoses. These include PVL (periventricular leukomalacia), duplicate chromosome 16, autism, apraxia, SPD (sensory processing disorder) and delays in all developmental areas (he is also a joy and has a sarcastic, wonderful sense of humor). Or, if maybe not for Kai, could others with special needs that are more high functioning benefit from this practice? I decided to find out.

David Sheffield has practiced martial arts for 39 years. He launched the first Dojo back in 1982, in another town. After a couple of different locations, The Dojo arrived in Mineola. David is a Chief Instructor 8th Degree Grand Master in American Tae Kwon Do. Interestingly, he did not have his first student with special needs until 2010. No one asked him until then.

If you think about the history of people with special needs and special education in this country, it makes sense that special needs families didn’t feel that they could reach out for these types of activities until the last several years. A small country town doesn’t necessarily move at the same pace as a big city with new ideas, either. Since then, David has taught students with a wide range of diagnoses including cerebral palsy, autism and downs syndrome, as well as folks with physical issues, hip replacement, people who use wheelchairs and even the elderly. The oldest student so far was 89.

Having watched him teach many classes over time, I have seen the skills that I recognize as great teaching. Patience is consistent, presentation is varied for different learners, he makes it fun and engaging and spirits are always buoyed. Students are all taking the same class but working on their own levels (differentiation for you teachers). The higher level students support the lower level students, so everyone is teaching and learning simultaneously. And when my daughter feels anxious or overwhelmed, David has a way of honoring her feelings while lifting her up. He includes EVERYONE. But, for students who may benefit one-to-one or in a small group with other students with special needs, that is available too. As for David, he feels that teaching folks with special needs is an honor for him and he makes sure that they know it.

As one of the adult students and assistant to the teachers at the Dojo, Brian Moser feels this topic on a deep level. Brian has been on his martial arts journey for 24 years and has been at The Dojo for the last two years. But Brian also has a son with special needs, Brennan, who is ten years old and has Asperger’s (or, since this has changed, he would currently be considered on the autism spectrum). Brian feels very strongly that martial arts is for EVERYONE. He believes that things are changing for the special needs community because people are becoming more educated. He feels that social media plays a big role in this, as people freely share ideas and repost new information so others can also see it. So, even in a small town, new ideas are more available than ever and integrated at a faster pace.

Brian is a very hands-on teacher who makes students feel cared for and nurtured (my daughter has a lovely bond with him). When working with special needs students in a mixed group class, Brian goes out of his way to partner with them, model, use positive reinforcement, and build them up. He wants to encourage parents of children with special needs to investigate martial arts for a sense of community. And don’t count your child out because you don’t think they can do it. You will be surprised at what they can do with modifications and amazed at the power and pride that they feel with their accomplishments.

So what does this mean for you and your child with special needs? Who can benefit from training and what will the benefits be? Here are the takeaways:

• Students of almost any level of cognitive function may benefit from taking martial arts classes. David says that the minimum requirement would be control of at least some areas of the body. Brian went even further. He says if your child can show up, look at him and smile, that’s all you need. Obviously their path may look different than with typical students but the journey style is the same. You start where you are and move forward at your own pace.

• Classes can be adapted for different learning styles. If the teacher is good, presentation can have a huge range of possibilities and include a variety of sensory, visual and musical applications. David said that he would also make other modifications as needed such as changing doing a take down to doing a push off.

• Speed is not a factor. It is not a factor when learning to move and it is not a factor when moving up in belt ranks. Again, the journey is personal and different for everyone.

• In addition to learning self defense, taking martial arts classes is valuable in that it teaches the student to control their faculties as well as self management skills, discipline, respect and confidence.

• In the right class, your child with special needs should feel part of a community where everyone supports and encourages each other. If the presentation feels more like “Might is Right,” this is not the place for you. Go somewhere else.

You know how sometimes you need to go through a few different therapists or teachers before you find the right one for your child? I urge you to strongly consider this path and to persist if the first or third school isn’t the right fit. With the right teacher, a martial arts journey can make a world of positive difference for your child with special needs.

As for me and my house, we will attend The Dojo. I am so grateful that ALL of my children can benefit.

Has your child with special needs had a good experience studying martial arts? Please share in the comments below.