Month: February 2019

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.

Imagine a shooting star. It is bright and stands out amongst the other stars in the sky. It dazzles. Imagine that you are watching it shoot across the sky, past all the other stars. Your eyes are drawn to it. It is thrilling. It is the most amazing, best one.

And then it is gone.

And what is left? The stars that are stationary. They are less bright, but still shining. They persist. And they are also beautiful. The shooting star is but a memory and the remaining stars shine.

Now imagine this. You are running a marathon. But you are running it as fast as you possibly can from the very first steps you take. You are in a full sprint. You have to go 26.2 miles as fast as you possibly can. How likely is it that you will complete the marathon, going full speed, without burning out?

The sprinter and the shooting star both have something in common. They are operating at full capacity. And, quickly, their time of excellence is over.

If you give 110% of yourself to ANYTHING, you will soon purge yourself of the very energy you need to conserve to continue. This description of high devotion sounds impressive and committed, doesn’t it? But because it is impossible to maintain due to limits in energy, time and resources, it can only be achieved for a brief period of time, if at all.

This is something that we, as special needs caregivers, cannot afford.

Additionally, while we want to do “our best” for our amazing angels, defining what our best is and measuring it against what other people appear to have in terms of energy and best effort is also a fruitless comparison. They are not you and you are not them.

So how do you set the pace when living the special needs life?

The first step is to set an amount of goals that are manageable for you and your child. For example, my son, who is six years old and special needs, has a lot of different things to work on. His hands are not strong(and he is highly unmotivated in this area). So he needs to work with puzzles. And playdough. And a peg board. And writing. And coloring. And lacing (which we haven’t even started). He needs to practice zipping, buttoning, cutting and any kind of manipulating of objects. But he also needs help with speech. And gross motor activities. And feeding (although we may just end up eating purees, AKA baby food, for a long, long time and that’s OK).

I’m sure that I am leaving things out but this is a good start on our list of things to work on. Imagine what would happen if I gave 110% all the time to ALL of this. Or even to six of these things. Having made this mistake in the past, I can tell you that the outcome isn’t pretty. You only have a certain amount of time in an hour, a day, a week, a lifetime. You can work on anything you want. But you can’t work on EVERYTHING, or even most things, at the same time, going full speed, 110%. And the more goals that you have to work on, the less effective this strategy will become.

This is also true as a caregiver and, as a human. In your own life, the thinner you spread yourself, then less energy you can put into each thing that you are working on. This is not to say that you can’t do many things at the same time and do them well. We are, after all, a society of multitaskers. But you can’t give 110% all the time to everything without the inevitable burnout.

After you have identified what goals you are going to work on and shortened the list to what is truly manageable and meaningful for right now, the second step is to set the pace. You want to shine like a star but not burn out like a shooting star. So what percentage of your time, energy and resources can you give, continuously, to your goals that you can sustain over time? That amount is different for everyone. Sometimes “good enough” is going to have to take the place of “perfect.”

A job that is an excellent example of this is teaching. When I was a teacher in the classroom, I really had to learn to set long and short term goals, pace myself and realize that the list of what needed to be accomplished gets ever longer, every single day. You could work 24 HOURS A DAY and NEVER accomplish it all. So I had to set the pace for myself so that things could get done, and, most importantly, I could have the energy to come back tomorrow. And since my most important goal was the excellence of my students, sometimes the bulletin boards that I had to decorate in the hallways had to be “good enough.” Cute, but not a masterpiece. I was not one of “those” teachers who could turn every art project into a masterpiece with ease. I’m so jealous of them (I mean, aren’t you?).

I realized that if I wanted to shine when teaching, I could work at 75-85% of what I felt was my capacity of time, energy and focus and still come back the next day. And, most importantly, I could do this CONSISTENTLY.

I cannot, however, do this with my son at home, as consistently. Sometimes I drop the ball. Sometimes we skip working on something that we “should” work on (do you “should” on yourself, too?). Because I am human. But, I try to work with him at about 70-80% of my capacity most of the time. If you haven’t noticed yet, these percentages are very unofficial. I do it by feel.

The third step is to check in with yourself daily. How are you feeling? Are you tired, stressed, overwhelmed? Did your child sleep through the night for the first time in weeks and you got some rest? Adjust your efforts to your goals that day accordingly.

The fourth step is to reevaluate your goals for your child over time. This is NOT a failure if something either isn’t working or isn’t going as quickly as you anticipated. It is smart to examine what is working and what is not. Maybe you need to come back to reading a book to your child when you are on the fourth day in a row of complete rebellion. Instead of ramping up your energy in this area, back off. Focus somewhere else. And come back to it at a later time. If you are functioning at 75-85% of your capacity, why waste it in an area that is not working right now?

The fifth step is to leave yourself room to WOW. You know how sometimes you want to pull out all of the stops on something and go at that full 110%? For yourself, for your child? If you leave yourself room in your energy level, time and resources, you CAN be a shooting star. You CAN sprint. Just not all of the time. Pull out that last bit of reserved energy, time and effort every now and then to really shine. Bake the eight layer cake that your child loves. Work on shoe tying relentlessly for a week (if your child doesn’t rebel). Make a deadline at your job and have the best bulletin board at the school where you teach (this is SO EXTRA, what’s my deal?).

The sixth and last step is to recharge. You can’t function at any level, long term, without taking breaks and taking proper care of yourself. If you, like so many other special needs caregivers, have dropped the ball in this area, that’s OK. But do yourself a favor and pick the ball up. NOW. Today. Self care, while a buzz word in our society, is an absolute must when living the special needs life. Take a break. Sit on your porch swing and have a cup of something steaming hot (or ice cold). And pat yourself on the back. You are doing it!

Just a quick reminder about self care. If you decide that you need to exercise to take care of yourself, remember that this is a LIFELONG practice. Don’t go 110% the first day! You won’t be able to walk and won’t want to come back tomorrow.

Living the special needs life (or any life) is a marathon. You are going the distance, not going for speed. You can do and have and be almost anything but you can’t do and have and be everything, all at the same time and do it well.

Do it well. For yourself. For your child.

What strategies have you used to pace your life in the past? Please share in the comments below.

When you have a special needs child that is predominantly non-verbal, it is hard to think of everything. Last year, we moved to a small town and we changed schools. My son is bussed to another district that has a wonderful campus devoted solely to special needs. No inclusion for him and that is the best placement. It is exactly what he needs. The entire campus is trained in special needs education and even the bus drivers work in the classroom and know how to interact with these amazing kids.

I love the staff. They are warm, loving, accessible and my son feels very confortable there. Because he has a long list of diagnoses, some not common, I went out of my way to educate them and they were receptive to learning. I talked about his long struggle to eat foods without choking, why he walks on tiptoe most of the time and how it doesn’t matter how many times they tie his shoes, he will take them off.

But it didn’t occur to me to explain how to tell when my son has a headache.

I don’t know why it didn’t occur to me. After all, he is just beginning to talk, a stage we have been in for about two years. He can’t tell them if something hurts. When he doesn’t feel well, you have to guess what’s wrong. But he has a tell that gives away that he has a headache.

Every once in a while if his head hurts he may touch his head. But the thing that really gives it away is that he will squint ever so slightly. My husband and I have learned that this means his head hurts.

But because I forgot, he spent an entire afternoon at school with a headache.

I feel horrible about it. I explained his need for soft foods, his enjoyment of music and the fact that he knows all of his letters and sounds but may not show them he knows them. I told them about his affinity for learning while being immersed in water. I remembered to tell them that he still plays side by side with friends. And that he enjoyed being read to by other people, but not by his Mom (which, has thankfully changed since then).

The day that he came home on the bus and they told me that he had been out of sorts all afternoon I looked him over thoroughly before he even came out of the bus stairwell. He looked stoic and serious. Not his usual happy, smiling self. He saw me and there was no smile. He ALWAYS smiles when he sees me. And then, there was that tell. He squinted, ever so slightly. My poor baby had a headache.

How was the school supposed to know? I didn’t tell them what it meant.

So instead of getting medicine and feeling better fast, my son had to suffer for several hours. I want to cry when I think about it.

I have learned that you can’t remember everything. You can’t remember to do everything, share everything, tell everything, document everything. But I sure will be adding this one to the list.

So, please learn from my mistake. Is there something that your special needs child does that tips you off that they need medical assistance? Do they have a tell that shows you something is wrong that another person wouldn’t pick up on? Don’t forget to tell your child’s caregivers. Add it to the never ending, ever-growing list.

That is the last time my son will have to wait for pain relief due to a headache while at school.

What is something you always remember to tell your child’s caregivers about when transferring care to them? Please share in the comments below.