Author: Mara

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.

I was a full time stepmom to three amazing, older, neurotypical kids before I became a birth mother. When I became their parent, I went from having no kids, to having three kids, full time. However, since the youngest one was already six, they were past diapers, past toilet training, past all of the baby stuff that I found absolutely bewildering. It was a big adjustment but I had already been a teacher for several years, so I had some clue of how to care for them.

Not so when my first birth-child, a neurotypical girl, was a newborn. I remember that I was sitting at the local mall food court with the baby and my mother. My son, who is special needs, was not yet born. My baby daughter was a few weeks old. I was struggling. Thankfully, my husband, a veteran father by this point, was able to teach me so much about how to care for a newborn. But he wasn’t there that day.

My daughter was sleeping. It was the middle of the day on a weekday so lots of older folks were out and about and several smiled at my baby as they passed by. And I remember talking to my mother about how overwhelmed I was feeling.

Nearby, I observed a mother and FOUR girls sitting at a table. They were obviously sisters, looking very much alike. They were all perfectly dressed. They were sitting calmly at their table, talking quietly and eating their lunch. The oldest one may have been five. They were all very close in age. The mother was perfectly dressed as well, nails done, hair coiffed. I just kept watching them in astonishment. Here I was, at the mall, with ONE child and with my mother to help and I felt like a wreck. When I lifted my daughter from her car seat/stroller combo, I noticed that I had chosen a onesie that had a stain on the bottom, which hadn’t been obvious to me when I dressed her that morning. This woman had FOUR kids and herself dressed perfectly, and my baby had on a stained onesie.

I remember feeling like this woman I was observing had it all together. And that I would NEVER, EVER have it all figured out like she did.

Fast forward several years. This past December, I am sitting in my son’s special needs classroom for a holiday party. My son has evolved to a point where his Dad and I can come visit the classroom without it causing a huge meltdown because it disrupts his day. This was a hard-won achievement. He is sitting on a chair with his classmates at circle time, singing along (OK, babbling along) and cuddling my leg. Across the carpet, another Mom is struggling. Her son is crying like crazy because there are parents in the room and THAT IS NOT WHAT WE USUALLY DO. The mother is distressed. My heart goes out to her. And I think, if I were her looking up at me, I might appear like I have it all together.

This makes me smile inside. Because it is so far from being true.

Comparing yourself to other parents, especially other parents of special needs children, is a quick route to insanity.

From a logical perspective, it is simply not possible for the food court mother to have had it all together every single minute of every day. Heck, yeah, she was having a great moment that day in the food court, but can you imagine having four girls that close together in age? Conversely, it is not possible for the Mom at the class party to have every single minute of every day with her child be a wreck. You know that they must have good moments. That just wasn’t one of them.

When you compare your life, of which you know every single detail, with the slice of life that you see in other people, of which you know very few details, you are comparing apples and oranges. The next time you feel like you are the only one that doesn’t have it all figured out, remember that NO ONE HAS IT ALL FIGURED OUT. How could they?

You do the best you can with the information and resources you have available at the time. Sometimes your family will look put together and fantastic. You will walk proudly with your special needs child, head held high. Other times, you and your child will be a mess.

Let’s refocus. Instead of worrying about how you appear to others or trying to appear LIKE others, keep your eye on the prize. Your child is the prize. If a meltdown ensues, even in public, caring for them is priority number one. If someone sees you on your best day, well, they lucked out, didn’t they? And if someone sees your slice of life, either way, what they think about it is their business.

Worrying about having it all figured out is a burden you can put down right now. You will NEVER have it all figured out. And that’s OK.

When you think of the concept of success, what pops into your mind? Is it making a lot of money? Having a powerful job? Having a thriving business?

We have a lot of preconceived notions of success. A lot of them are put into our minds very early in life. Our parents tell us that to be successful, we need to do well in school. Our culture says (or used to say, this is changing) that college is the only way to success. Marriage has been held in high esteem in the past for a successful life. More money is supposed to equal more success.

And when you have children? In our culture, having perfect, healthy children has always meant success.

So what happens when your child is perfect (to you) but “atypical” in this dynamic? What happens when your achievement, your child, is “less successful?”

Well, guilt sets in. The parent thinks of everything they could have done differently. They feel that maybe they have let down their families. Sadness follows quickly, as the parent realizes that whatever they envisioned as a “successful” parent has failed. It just ain’t gonna happen. And that is tough to swallow.

But if you look at the true definition of success, you will find that it is not only still possible, but your success story can be richer, deeper and more meaningful than you ever thought.

Here is a life truth. Success, by cultural definition, is not success by your definition. In other words, YOU GET TO DECIDE WHAT SUCCESS MEANS TO YOU. And then, you get to craft your life to create the path to your success.

How does this apply to having a special needs child? In every way. No longer are you bound by the typical, scripted path society implies is there for a typical child. Your child is on their own schedule. They will unfold and blossom on their own time and in their own way. It will be wildly different than anything you ever imagined. And the little successes that lead to bigger successes will be celebrated for their richness, their hard won achievement.

The actual definition of success is the accomplishment of an aim or purpose. Although you can allow society to dictate what you are aiming for, here’s a news flash – you don’t have to.

What is your aim for your special needs child?

Think short term. Think long term. What do you want them to be able to do? To enjoy? What gifts do they have to give to the world? EVERY child has gifts to give. They may not be what you initially envisioned and you may have to think a little harder to figure out what they are, but I promise you, the gifts are there.

So far, we have realized that one of our six year old son’s gifts is that he spreads joy wherever he goes. His smile is infectious and somehow when he enters a room, people light up. He just makes people feel good. So when he grows up he could be a companion for the elderly. A greeter. A host. Will he look like a typical person doing this? Of course not. Will he need assistance to be able to share his gift? Probably. But just because he does it differently doesn’t make it any less valid. If he decides that his aim or purpose is to spread joy and he succeeds in making people happy, is that defined as success? According to the basic definition, absolutely.

Take some time to define success, on your terms. Help your special needs child to define success, on their terms. And then put in the work and watch in amazement as your success and your child’s success blossoms.

Living the special needs life can be a challenge to think outside the box. In fact, we can smash the box together. I never liked it anyway.

When our son, Kai, was about two and a half years old, we had moved back to Texas from Las Vegas and needed to establish care with new providers. Kai had already been diagnosed with PVL (periventricular leukomalacia) in Las Vegas. This is damaged white brain matter. You can see it on an MRI clearly and we had no idea why it had occurred. He also showed signs of SPD (sensory processing disorder) when it came to food and textures such as carpet switching to tile or concrete switching to grass. Kai had already received ECI (Early Childhood Intervention) in Las Vegas. Since he had not yet turned three, the age where he qualified for public school special education pre-K, we wanted to continue receiving in home therapy for the next 6 months until his birthday.

We went to Cook Children’s hospital in Fort Worth. If you have never experienced this amazing place, imagine the perfect children’s hospital, multiply your expectations by 10 and you have Cook’s. Kai had a neurology appointment. We brought along his MRI so that they could review it. The neurologist referred us to psychology for a full screening. And the psychologist wanted Kai to have an IQ test.

I found this idea to be odd. Kai was nonverbal. He was still in the process of learning to follow one step directions. As a former teacher with a Master’s degree in education, I wondered how this test would be administered and how accurate it would be. When I expressed this to the psychologist, she assured me that they would make accomodations for Kai and that his father and I could be present for the test. After discussing it with Kai’s dad, we agreed that Kai could participate in the test. I believe I said something to the psychologist like, “OK, you can try. If you can get the information you’re looking for, great. Good luck.”

Test day came and we returned to the hospital. We discovered that a doctoral student would be administering the test. We met her, she took us back to the room and we explained to her that she would get better results if she took the time up front to play with Kai a bit and get to know him. Love on him a bit. Sing to him. She tried.

Kai hated her on sight.

Kai had a history of being able to read therapists and size them up pretty quickly. One of the misconceptions I have learned that people have about children with special needs is that they think special needs kids aren’t bright. Kai is very smart. When he meets someone, he decides pretty quickly if they are worth his time and energy.

The doctoral student simply didn’t make the cut.

Kai does not respond to tangible rewards. Stickers, charts, food treats, none of this stuff will get him to do anything. These are things that she tried, even though we told her from the outset that they didn’t work. After a while, Kai refused to sit at the table. But she kept trying.

The test was designed so that Kai had to only point to a choice of four pictures. I had to stop the doctoral student to point out to her that before she could ask him any questions, we needed to model for Kai what it meant to point. It didn’t occur to her to simplify to this level.

Stop for a minute and imagine the test results for children who don’t understand what it means to point to a picture on a test page. How do you think their test results come out? Uh-huh. Not good. But, here’s the thing. Just because a child doesn’t understand the concept of pointing to an answer, it doesn’t mean that they don’t know the answer.

Imagine that you are taking a test where you know all of the answers. But the instructions that you are given for the test are in a foreign language that you don’t understand. You then fail the test because in the foreign language that you don’t understand, you were told that you needed to point to the answers as each question was asked (also in the foreign language). Is this an accurate measure of your knowledge? No, it isn’t. This is not to imply that Kai knew all of the answers. It means that you cannot use this test as an accurate measure of anything.

I still laugh when I recall what happened next. The doctoral student kept trying to ask Kai questions. Kai continued to refuse to participate. She displayed four pictures on a page. She said, “The bee says Buzz Buzz. Which picture shows a bee?” Kai, standing in the corner of the room and fed up with her after showing her in every possible way that he did not want to participate in the test, turned around and GLARED at her. He then stomped his way over to the book, pointed his finger very deliberately, smacked his finger on the bee and then turned his back to the doctoral student. He KNEW the answer, but he did not want to be bothered! As far as Kai was concerned, it was game, set and match. He would no longer interact. My husband and I apologized for laughing so hard.

But it also took my breath away. I had no idea that Kai knew that. Proof that you never really know WHAT your child knows.

What I want you to take away from this is that a test is just a snapshot of what occurred on the day it was administered. It may or may not be accurate. A good test administrator will be able to tell you if they think the test is accurate.

The doctoral student reported to the psychologist that the test was inconclusive. In other words, because Kai couldn’t or wouldn’t participate, the results were inaccurate.

Even if someone is able to get a score, it is only a snapshot of what has occurred. I am not knocking testing. You need to test to figure out where a child is so that you can meet them at their level and help them to get to the next level.

What I want you to know is that a test score is not the be-all and end-all. It is a beginning step. If you feel that a test score is wildly inaccurate, speak up and say so. Or, if you feel that a test score is pretty accurate, don’t spiral downward into a depression if the score is low.

Consider it the starting line. There is nowhere to go but up.

There are some parts of special needs parenting that you just cannot anticipate. Whether you discover that your child will be special needs while they are still in utero or just after birth, whether in early childhood, or later, nothing prepares you for the punch in the gut of diagnosis. Especially if you have little to no experience with the special needs world.

Prospective parents have a vision of their child. Some people think they will have a son to toss a football with. Some people think they will have a daughter who is a ballerina who loves pink and sparkles. Or, sometimes, it is the son they envision as the dancer and the daughter who wears the shoulder pads. But, whatever the vision is, I have never met a parent who envisioned their child having a disability. I mean, have you? No one says that they are so excited about having their baby and they know just what they’re going to do when the baby stops developing normally at 7 months. They don’t register for that perfect wheelchair. They don’t ask for magazine subscriptions so they have enough reading material for all of the hospital stays.

Finding out “something is wrong” with your child is a reactive position to be in. You can’t plan ahead for it. It happens to you and you react. It’s as simple as that.

Life happens.

But there are certain things that you CAN prepare for in advance. If you know it’s coming, you can be PROACTIVE instead of REACTIVE. And being proactive has some distinct advantages.

Being proactive means that you have time to plan how you want things to go. With a calm head. When put into a reactive situation, it can feel like you are a deer in the headlights. Often times you choose how to react based on what is available or what you can create in that quick time frame. Never mind if you slept last night. Or if you are still recovering from a migraine after a four hour tantrum yesterday that began when your child smelled something weird in the air that you can’t smell, no matter how hard you try. When you envision what is coming and you plan how you will handle it, it gives you a sense of security. It takes away the deer in the headlights feeling. It brings down your anxiety.

This is not to say that your proactive plan will always be perfect or always work. But having something is better than having nothing. Investigating what is available makes your options clearer and thus, easier to navigate.

So, to recap, ENVISION + PLAN = SENSE OF SECURITY.

But what do you apply this concept to? Everything.

Make a list of what worries you when you think of the future with your special needs child. If you know that one day in this lifetime you will become ill and need childcare (which is crazy hard to find for special needs children), start searching for the babysitter NOW. While you are perfectly healthy. It’s so much easier than when you have a temperature of 102 degrees and can’t swallow without pain. Are you aware of the fact that one day you will die? Don’t wait until you are on your deathbed to try to figure out who will care for your child. Figure out who that is. Check with them to make sure they really will take on the responsibility. Create legal documents. NOW. Make a will. Yes, you. Don’t wait. Or your first husband could get your home even though you haven’t been married to him in 20 years and your second husband hasn’t lived with you for five. Meanwhile, where will your child live?

If you can’t figure out a plan for your child in the event that you are unable to care for them, NOW is the time to reach out to the school, the counselor, the therapists, the organizations, anyone and everyone to ask for their input on what to do. Get suggestions. Someone probably will come up with some you never would have thought of.

Are you aware (in some hazy, distant future kind of way) that your child is going to grow up and be an adult with disabilities? There are so many parents that I have been reading about who seem blindsided by this. They knew it was coming but since they didn’t know how to handle it, they just kept putting it off instead of researching what will come next. Does your town have programs for new adults like your child will be? Investigate! Ask the school for referrals. Ask them about transition. Think about what kind of daily life your child would enjoy and thrive in. Maybe if your town doesn’t have a program that appeals to you, you could start one. Or, if you find an amazing program in another city, would you consider moving there? Don’t wait until their last year of school! Start now, especially if your child is younger than age 10. Soothe your anxiety. Know your options. I read one woman’s blog who has worked herself up into a daily panic attack because she has NO IDEA what’s coming next. I feel her pain. But it is evident to me from what she wrote that she hasn’t researched it. Heck, I’d be panicking too!

I know, I know, you are exhausted. You don’t need ONE MORE THING on your plate. But break down what seem to be huge tasks into baby steps. You can do this, since you are starting early and giving yourself extra time. Make a list of what steps you need to get you to making some decisions.

Be proactive while you are healthy, happy and functional. Start early. It is the greatest gift that you can give yourself and your child.

It was Friday and I was exhausted. My husband had been up all night, sick, and I had gotten up to help him. This is especially dangerous for him because he is recovering from non-alcoholic fatty liver disease and hepatitis. After a sleepless night and trying to get everything done that I needed to do while taking care of him as well, we decided that while the kids were still in school, we would take a nap together.

We climbed into bed and I turned off the volume on my phone. I usually do this and my husband doesn’t, so I don’t worry if the schools call because if they can’t reach me, they call him next.

It didn’t occur to me that since my husband was sick, he also turned off his volume.

So there we were, trying to catch up on missed sleep. I set my phone alarm for an hour before the kids got home so that I could get up and have time for a hot beverage before they arrived. We live out in the country so our son, Kai, who is six years old and special needs, leaves school and is on the bus for about an hour before he gets home. He is bussed to another district which services five surrounding districts with a special needs-only campus. This is the perfect placement for Kai, who is low functioning and would not benefit from any inclusion in general education. He also LOVES the bus, so what seems like a long ride to us is heaven for him.

I happened to wake before the alarm and, good thing, because I had six missed calls and texts. Kai had thrown up at school and they were trying to find me to come pick him up. They had also called my husband, but, of course, he was sleeping next to me. The school had just let out for the day and was about a 25 minute drive from our house, without traffic. Kai’s amazing bus driver called as I was frantically reading the texts and told me what happened. She was about to leave campus and they didn’t want to put him on the bus in case he was contagious. Some of the other students are medically fragile and don’t need to be exposed if it can be avoided.

I knew that if Kai was staying behind at school when the bus left that he would be extremely upset. He wouldn’t understand. I also knew that the shorter the amount of time it took for me to get there, the less time he would have to feel upset. So I jumped out of bed, grabbed everything I needed, explained what was going on to my husband and ran out the door. It wasn’t a short drive and I wanted Kai to feel better emotionally and physically as quickly as possible.

I was racing down back country roads when it occurred to me that maybe the bus driver hadn’t communicated with the office that I was coming. I decided to call and let them know that I was on my way.

They seemed kind of… pissed off.

“You’re just leaving your town NOW?” they asked.

“Yes. I spoke to the bus driver and just left. I will be there as soon as I can,” I said, trying to control my temper. The tone being used made me feel like a shitty mother.

“OK. Thank you,” a clipped voice responded. And they hung up.

This brief interaction made me feel like I was up for the Bad Mother of the Year Award. I felt like I should invite my friends to the ceremony just for the appetizers.

As I was racing down the road, trying to contain my temper, I thought about when I was a teacher in the classroom. I thought about the time that I waited until 7PM for a conference that the parent couldn’t schedule any other time and then they were a no-show. I thought about the home visits that I had made when I worked in a particularly rough school. And I thought about how for every parent that was amazing and on top of things, there was a parent that was a flake. That didn’t answer the phone. That didn’t show up.

Because they couldn’t reach me, for 25 minutes, I guess I looked like a flake.

The principal, whom I adore, was off campus this day. When I raced into the parking lot (27 minutes after being in a dead sleep and in school traffic, thank you very much), I ran up the ramp to the door. Everyone else was gone except three women, who were standing and sitting around Kai. Kai had thrown himself on the floor and was laying there crying. I knew a couple of things immediately upon seeing him. He was upset because the bus and his friends left without him. He didn’t understand why he was still there. And the ladies couldn’t comfort him because his meltdown had gone beyond where they could reach emotionally. They were doing what they were supposed to be doing in this type of situation. They were surrounding him, they were nearby so he couldn’t get hurt and they were making themselves available in case he wanted them. They were right on target.

I opened the door and before I even took one step, one of the ladies said, “Could you sign this clipboard?” and kind of shoved it at me. Kai was in distress and she was shoving a clipboard at me. I walked right past her to my son. Didn’t acknowledge her. She probably thought in my upset that I hadn’t heard her. I heard her just fine. My priority list had one item on it – Kai. The damned clipboard could wait.

I went to my knees beside him and talked softly to him. I wiped his tears. I acknowledged what I knew to be true. I told him that I saw that he was upset. And that I knew that this was not what we usually do. I kissed him multiple times and stroked his head. I asked him, “Are you ready to feel better now?”

He said, “Yeah.” His face grew calmer. I held my hands out to him and he took them and stood calmly beside me. What may have looked like a magic trick to others, is just me mothering my son. You mothers and fathers understand, don’t you?

The woman repeated, softer now, could you sign this clipboard? Now, I was ready.

I knew one of the three women. She was the school nurse. I had had many interactions with her before and she has taken incredible care of Kai. She even held him and watched Mickey Mouse Clubhouse with him one day when he was upset because he hurt his finger. The other two, I had never seen before.

The nurse asked, “Are there other numbers we can call when we need to reach you?” I explained my circumstances from the night before, that there were no other numbers, that this never happens and that it would never happen again. I also threw in that I knew it was the Friday before a three day weekend and that it sucks to have to stay after with a student. The three women protested that it wasn’t about that, but I told them that I had been a classroom teacher and, even if it isn’t about that, it still wasn’t ideal. I apologized to them. My response was in direct contrast to how they made me feel, which was that they thought I was a shitty mother for not being available by phone, that it took me too long to get there and that I had put them out. I simply pretended otherwise.

Then, I took Kai, and I got out of there.

Why didn’t I tell them how they made me feel? Because, believe me, I am no wallflower.

I recalled a former boss of mine who I loved. She had a saying that she repeated often. She would say, “We have bigger fish to fry.”

Look, I made a mistake. I should have been available and I wasn’t. Its never happened before, and Lord knows, after this, I will try really hard for it to never happen again. Two out of three of these women don’t know me. They don’t know that I talk with the principal several times a week. Or that she sends me pictures of Kai during the day. Or that I created my own “Kai Report,” because I wanted to know more about his day. Or that Kai has come further with his mother and father educationally than with any teacher he has ever had. They only know what they saw. I wasn’t available. I didn’t answer the phone. And they made their own assumptions, which they conveyed through tone and body language.

I could address this, I really could. But, the fact is, I don’t deal with these women on a regular basis. The nurse is always great. The other two were the ones conveying their disapproval. They don’t matter to me and they don’t work directly with my son. And, sometimes, so I don’t go insane, I need to let it go.

That same boss used to tell us to take a deep breath (Smell the popcorn!) and let it out (Blow out the birthday candles!). To calm yourself. I need to keep my eyes on the prize. My incredible son, he is the prize.

I have never been good at letting things go. And I didn’t like how I was treated. But I’m taking one for the team.

Recently on Facebook I have been seeing the ten year challenge. You find a photo of yourself from ten years ago and one from now, you put them side by side and you see how you have aged. Those that were 16 years old ten years ago seem to be coming out ahead. But, for those of us that are a bit older, there seems to be a lot of trepidation. I have seen people commenting on their own photos trying to explain away or justify the changes. They seem to have a lot of negativity. They are embarrassed at their weight gain, their wrinkles, their oldness (probably not a word, but you know what I mean, right?).

I have not done the ten year challenge. I’ve thought about it, but I already know that I will come out on the losing end. Although my weight is further down than it was ten years ago, I have more wrinkles. I look older. Because I am older. But when I think about what I have gone through in the last ten years, doesn’t this make sense? I mean, who isn’t older? Not one person reading this can claim that they aren’t ten years older than they were ten years ago. Unless they are dead. But, then, they aren’t reading this. You are.

I know that the ten year challenge is just supposed to be a fun, silly activity. But for those of us who are living the special needs life, being distracted by something that we cannot control (i.e. aging and the passing of time) and feeling badly about it is a time suckage that maybe we don’t need.

So, here is what I propose. Let’s do the ten year mental, emotional and spiritual challenge. Think about where you were mentally, emotionally and spiritually ten years ago. Then compare it to where you are now. Which version of yourself do you like better?

For me, I like myself better now. What time and aging ravages physically, it often improves mentally, emotionally and spiritually. I like my life experience, my greater amount of wisdom, my ability to let things go easier (but still not easily; working on it), my greater ability to love, to be more kind, and my connection to God (a path that I had to form myself being the child of an ambiguous father and an atheist, psychologist mother). I like that I am able to see things from another person’s perspective better than I used to. I like that I am seeing things less black and white and in many more shades of gray. I like that I am a better mother than I was ten years ago. I hope that I am a better spouse. I think I am. I like that I am a better mother to my son with special needs than I ever would have been back then. I like that after what felt like a huge slap down from the universe, I am finally coming back stronger.

You can’t see this stuff in a picture.

This is not to say that I couldn’t use some improvement. I absolutely could. After all, isn’t there room for improvement in just about everyone?

But what if you liked yourself better back then? What if you feel like a mess? What if you are in a downward spiral?

Life is cyclical. As long as you continue to live, you will have up times and down times. So, the real challenge, no matter where you are in the cycle of life, is to now look ahead ten years. Who do you want to be mentally, emotionally, spiritually, and, yes, physically, ten years from now? What kind of parent do you want to be to your special needs child? Imagine who you could be. Then, make a plan. Become that person.

The only thing that is stopping you is you.

There is no one I have ever met who is as mean to me as I sometimes am to myself. And I don’t do it that often. But when I do, it is surprisingly harsh. I just started being mean to myself a few years ago, right around when my mother passed away after a harsh battle with Alzheimer’s disease. My son had been diagnosed with disabilities right around the same time and we had a very hard couple of years. If you missed that article, you can read about it here:

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

My mother was gone. Things were still nuts. I was still working full time, our son was having up to ten therapy sessions a week and we were trying to sell our house in Las Vegas to move back to Texas. We had never wanted to leave Texas in the first place but since my mother refused to move there and she needed help, we had joined her in Las Vegas.

I was mourning HARD. My mother was my best friend, my champion. There was no one who had loved me as she had. I felt empty. I was going through her things, getting rid of stuff. I had never realized that she was such a packrat. She saved every paper, every receipt. She had the heating bill from the house I grew up in, which she had moved out of twenty years prior. It was a lot and it was difficult.

One night, I was sitting quietly by myself and I thought, “I miss my mother.” What followed in my brain was a barrage of nastiness.

My brain said, “Well, tough. You will never, ever see her again. She’s never coming back. She’s gone. Never, ever, never, ever. Too bad. You will have to live like this. You will never feel better again. You will never feel happy again. And you helped her to die so it’s your fault.” I had honored my mother’s wishes by bringing her to hospice and having her sedated. She had chosen to stop eating and drinking and told me she wanted to die. She had had a long, hard road and it wasn’t going to get any better. I did what she wanted. I was having a very hard time with this.

I felt like someone else was in the room. And they were incredibly mean. Only, for the first time in my life, that someone was me. I was incredibly stressed and I’m sure that played a part in it.

I told no one. And then it started happening, repeatedly. I would be doing whatever daily chore I needed to do and in my mind, I would think, “I miss my mother.” And the insults would start.

It was devastating. It was becoming hard to live with. And on some level, it was true. It wasn’t my fault, but in this life, she was gone. And in this life I would never, ever see her again.

I was nowhere near any self care. I was not seeing a therapist, although, Lord knows, that would have been helpful. And I wasn’t talking about it to my husband, who was stressed beyond belief, trying to keep our life together, get the house cleaned up, get it sold and get home while participating in ten therapy sessions a week in our home for our son. I didn’t want to lay one more thing on him.

One day, when it had happened again and I felt like I had just gotten beaten up, I decided that I needed to figure out a solution or I was going to go nuts. I thought hard about it and decided that I was going to REPLACE the words that my brain was saying to me. The only thing that I could think of was the word YES. I missed my mother. YES. All the other words, when they came, were to be immediately cut off and covered with a loud, resounding YES in my brain. If my brain continued to respond, I would just repeat YES. In my thoughts. Loudly. I was going to cut off this mean mental process that had taken me over. This meanie was not going to be allowed to win. After all, how dare this mental person be mean to me after what I had just gone through?

It took a few days to overpower the thoughts. Now, almost five years later, what I put into place is automatic for my brain. Any time that the thought filters through my head, “I miss my mother,” my brain automatically says in response, “Yes.” There is nothing else to say. I can’t do anything about it. This is sufficient. I acknowledge the feeling. YES.

I then started to think about if there were other times when my brain was not as nice to me as I would like. And, I realized, that this also sometimes happens when I think about my son.

My son has PVL (periventricular leukomalacia), Duplicate Chromosome 16, Autism, SPD, Apraxia and more. We don’t know why he has any of these things. Specifically for PVL, which is damaged white brain matter, there is usually a list of things that could have caused it. In our case, none of these reasons were present. We will never know why.

I realized that my brain sometimes blames me. It is sometimes not as nice to me as it could be. And when these thoughts come, they are HARSH. It is not my fault. Not only that, but fault doesn’t even really matter because an admission of fault changes nothing. And my son is incredible. He is my happy-go-lucky angel, not a care in the world, doing well in school and thriving.

So I applied this same principal to getting my thoughts under control. I REPLACED them with thoughts that were kinder. I fought back against this stream of thought. Any time my brain began to harrass me about this I would reply loudly but silently in my head, “THAT IS NOT ALLOWED.” Because my brain, first and foremost, needed to be kind to me.

This doesn’t mean that everything is rosy and I don’t accept responsibility for things. But, I know when excessive meanness is being played out in my thoughts.

You can use this, too. Not every thought that goes through your head is true. Not every thought that goes through your head is appropriate. And, if your brain starts treating you badly, there is no reason why you have to accept this behavior. If you wouldn’t (and you shouldn’t!) accept this type of treatment from someone else, you sure as heck shouldn’t allow it in your brain either.

When you choose to replace your inner dialog with something supportive and comforting, you create a better life for yourself. This is a technique that you can use at any time, anywhere. It’s free. And it works. Try it.

I would love to hear how you applied this technique and if it worked for you. Please let me know in the comments below.

When I wake up my children in the morning, I say the same thing to them every day. I gently remove the covers and I rub their backs. And I say, “Good morning, I love you, I’m happy to see you today,” in a sing song kind of voice. Sometimes I say it a few times. Then I invite them to stand up and right into a hug. I wait until their eyes are open and I see that they are alert. And then I ask them to start their morning routine.

For my neurotypical daughter, who is eight, it is then time to go into the bathroom on her own and brush her teeth before finding her clothes for the day.

But for my son, who is six and has special needs, it is different. After the hug, he always lays his head on my bed while standing up. I unzip his back zip pajamas and take them off. Then he climbs up onto the bed. I change his diaper, apply his oils and put his clothes on him for the day, stopping the stroke his cheeks. I help him to stand but taking both hands and having him slide his feet to the floor. I give him kisses as I slide the straps up on the overalls that he wears every day to help keep him from accessing his diaper. I gently finger comb his hair. He brushes his teeth at school, so we don’t do that in the morning. Then he is ready to go out to the living room for socks and shoes.

He usually has about ten minutes of tablet time and a couple of vanilla wafer cookies before it is time for the bus. Daddy and I get his lunch and backpack together. His jacket is ready and waiting. When the bus pulls up outside, we say, “The bus is here. Time to go.” He loves the bus. We slip on his jacket. Dad kisses him. And most days, it is he and I walking out the front door. We pause after the door closes and I say, “Kiss Mom.” I bend down and he kisses me. Then he walks, without holding my hand (something we worked on for a year) toward the bus. About halfway, we stop for one more kiss. And then he walks the rest of the way, climbs up the four steps and sits down to be buckled in by the bus attendent. I chat with both driver and attendant, two incredible women, and then the bus takes off as I wave.

We do this every morning, on school days.

If it’s not a school day, we do everything up to going to the living room (maybe staying in pajamas after diaper change) and then it is relaxation time.

99% of the time, our mornings run smoothly. It is because of our routine.

Among our son’s many diagnoses, including autism, PVL (periventricular leukomalacia) and duplicate chromosome 16, he also has apraxia. This is a speech delay in which the brain probably has the words but there is a disconnect going from the brain to the mouth to say them. He is just beginning to talk over the last year and a half, which, as you can imagine, is thrilling for our family. Sometimes, over the years, he has said something one time, perfectly clearly and then never said it again. Or he’ll say it again, but two years later.

So sometimes we wonder, does he understand? Does he know what we are saying to him?

He does. When he was about four years old, his Daddy went to pick him up from PPCD (preschool for special needs children). Our son walked out with his class, went up to his Daddy, wrapped his arms around Daddy’s legs and said, “Happy see you.”

If you are on a similar journey, you know that it brought tears of happiness to Daddy’s eyes.

It takes massive amounts of repetition for someone with PVL to learn but they absolutely can learn. Day after day, I say, “Good morning, I love you, I’m happy to see you today.”

Our son never said it again. But I know he hears me. He understands me. My heart is full.

You can’t know what a child understands. It is especially difficult to guess when they are non-verbal. Do your best not to underestimate them. Give them opportunity. Give them time. Give them love. Give them routine.

My routine works for us. It may or may not work for you. What is important is that you create a routine that is consistent and makes your child happy to wake up in the morning. It makes your lives smoother and easier. And, I was surprised to discover, it gives them learning opportunities.

What is your morning routine like? Please share in the comments below.