Author: Mara

The end of the year, and the decade, is approaching quickly. Many of us think about all of the things that we have wanted to accomplish while living the special needs life. Some of them we have completed, other things started and waned, and some have fallen by the wayside. Our lifestyle doesn’t always allow for completion, what with the endless time and energy that we invest in the ones we love the most.

As we close out the year and begin to think of the upcoming one, we are prone to making New Year’s resolutions. And, often, within a few weeks, we set out with resolve and dive in. And then we realize that although we have good intentions, it may not be practical to go balls to the wall full speed ahead. Especially when we are probably functioning on less sleep than is optimal and dealing with the endless meetings, doctor’s appointments, therapy appointments and so on.

And so, this time around, might I suggest something different? Instead of resolutions, perhaps we should examine and readjust our priorities. Instead of adding ONE MORE THING to our ever busy lives, why don’t we focus this year, instead, on what we can remove? What just doesn’t have to be a priority?

If you think about all of the things that you have committed your time, effort and attention to in your daily life, is there anything that you could let go of? What commitments just aren’t serving you well anymore? By deciding what is really important to you and what is, well, just not, you can then take steps to relieve your burden.

For example, I NEVER volunteer in my typical daughter’s classroom anymore. Does that sound awful? I spent fifteen years as a classroom teacher and am now a stay-at-home typical and special needs parent, a writer, the wife of a husband recovering from a long illness and a committed Crossfit enthusiast (which all began because I was getting hurt caring for my son). Although I know that as a teacher I appreciated parent help, I have talked that talk and walked that walk. I know that I have helped hundreds of students and families in the past and may again in the future. But right now, this is something I needed to take off of my priorities list.

You know what stayed on the list? I show up for my daughter. At every school event and lunch at least once a month. She gets so excited to spend that extra special time with me. I doubt she would remember much about my volunteering to cut out laminated teacher things, but she will SO remember our times together at school events (Full disclosure – I have volunteered to send in extra supplies when needed. I know that this is valuable, too, doesn’t usually cost much and takes little time).

When examining priorities for yourself, it can be difficult to decide what you think is important and what society is telling you is important. Remember, society doesn’t have to live your daily life – you do. Make cuts accordingly.

When you prioritize and cut your list down to what’s really important, you can choose what your focus for the coming year will be. And you may have more time to actually act on this decision.

Upcoming priorities for this year for me – get certain financial things situated for my son with special needs; finish editing my book; laugh and play more; rework my budget to allow for the new; continue getting physically stronger to care for my son; enjoy my family. Oh, and spend more alone time with my husband.

Everything else? I’ll get there eventually, but it’s not a priority. And that is my New Year’s resolution.

Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!

Dear Santa,

I have heard that if I write a letter to you, you will read it. Everyone in pre-K knew this when I was teaching. So I figured that I would give it a shot. I have some wishes this year, for Christmas. Maybe you can help me out.

I wish that I was as old as I am now. Only, younger. A lot younger.

I like who I am now, at this age, more than any other version of me that I have met. But, if I were younger, I would, barring being hit by a bus or some other unfortunate circumstance, live longer to care for my son who has special needs.

So, please, make me a lot younger so that I can live longer. And also, keep me this age so that my accumulated wisdom and life experience can help my son.

I wish that I had a money tree. So that, periodically, I could harvest what grows and preserve it and save it, for my son. So that any time he needs anything, there would be no question that I could give it to him. Whether it be a new kind of therapy, a new technological support or just a new blankie. Funnily enough, before my Mom died, she used to tell me that when she worked in a flower shop, she used to make money trees. People would order them as gifts for people in the 1950’s. But, just so you aren’t confused, Santa, this isn’t the one that I need. I need a money tree that regrows the money as leaves regrow and replenish. Because there is always something new that my son needs.

Santa, I wish that I had endless energy and strength. So that when my son wants to run and play, I can keep up, even though we got up for the day at 2 AM. So that when he decides to throw a plate of food on the floor (not because he is misbehaving, but because he is done with it so he thinks that it no longer needs to be on the table), I can vacuum for the millionth time with gusto. So that if he has another seizure, I can continue to carry him from the car to the emergency room. So that I can continue to hold him and stand there and argue with the desk folks to let me through BEFORE filling out paperwork. So he can get care first. So that I can continue to carry him back when the desk clerk sees that I will not relent in the argument.

Please, Santa, this year if you could, give me better time management for my other children. So that they, too, feel special and have my attention. Oh, and my husband. He’s important, too.

But, Santa, here’s the thing. If you can’t bring me any of the things that I wish for, I’ll be OK. I have been living the special needs life for a long time now. I can do it without the wishes being granted.

My number one wish, Santa, is for my son to have continued joy in the care and love of his family. To be seen as someone who contributes to society – his job is to be a joy spreader, just like you! To be accepted exactly as he is. To not be pitied because there is no reason for it.

OK, and maybe, just for my son, a new tablet.

In my mind, if you deliver this non-tangible gift, there is a big, imaginary, magical, red bow wrapped around it.

It would be the greatest gift I have ever received.

Scratch that. The greatest gift I have ever received is my son.

But, man, Santa, it would rock.

Love,

Me

Oh, P.S. – If you could also make coffee keep up with what I need it to do, that would be awesome. Thanks, Santa!

Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!

*The blog is celebrating one full year!!!

A woman recently sent out a message on Twitter that her 21 year-old autistic son had just asked his very first question. It was,”Would someone like me?” This hits home on a deep and profound level for me for so many reasons. Take a look:

https://www.buzzfeednews.com/article/davidmack/son-autism-lonely-question-viral-twitter?utm_source=dynamic&fbclid=IwAR25oxDDEmUw4058Zv7foCcQEjOW2ei6IydfqMKg8O7sr7onNu483BIm_T8

We all have a need, no matter our abilities or disabilities, to connect. To be liked, cared for and appreciated. But so many people just kind of gloss over the fact that people with special needs are capable of having the same feelings that typical people do. That they can fall in love, they can be sexual, they can be good friends, they can have aspirations.

Sometimes people with special needs look different. It can be hard to get past that. Or, they may behave in a way that makes typical people feel uneasy. On edge. Because they are not used to it and they may feel like they don’t know how to respond, typical folks tend to shy away from making a deep, meaningful connection.

Society is changing and special needs folks are in the public eye and on social media more than ever. We are learning about so many of the differences that are out there. This education is making our world a better, more inclusive place that is kinder and so much more accepting. But, as a special needs parent, I still see a divide. There’s us and there’s them. The special needs camp, consisting of the atypical folks and their caregivers and families, and then, other folks, and their families. The other folks are more engaging in public than ever before, quicker to smile and say hello. But they aren’t making stronger connections as much as I would like. No parent asks if my son would like to get together with their typical child and play side by side.

My son is low functioning and gives absolutely no indication that he cares the tiniest bit about having a playmate or being included in anything. He has simple needs and likes to be by his family and that’s pretty much it. But I think about the higher functioning folks and wonder how many typical folks are trying to move beyond the social niceties that we are, just now, being offered on a more consistent basis. I ache for them, and also for their caregivers, who often also suffer from social isolation as well.

In a time where everyone, typical or atypical, is becoming more and more socially isolated, we need to reach out and work a little bit harder to connect. I want to take things a step further. Typical folks, that bit of extra effort to REALLY get to know and befriend those in the special needs community will result in some incredible people being your friends for life. I know. I’ve met them. Atypical folks and caregivers, the typical folks are starting to get it! They are starting to get us! Be patient with them, reach out and walk them through our world. Invite them in. REALLY invite them. They are scared of the unknown but once they know us, that won’t be a problem anymore.

Our special needs community has SO MUCH LOVE TO GIVE. Come connect with us.

Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!

Everyone has holes in their knowledge. Some of them are little and don’t really matter in day to day life. Some of them are huge and could be the difference between life and death. But everyone has them.

Some of the holes in my knowledge over the years have been very entertaining when they have come to light. Before I share them with you, I would like you to know that I have a Master’s Degree in education and am certified to teach both general and special education. I am what they call highly qualified. I can teach ESL to people of all ages. Sound impressive? None of this makes me immune to holes (and also, it doesn’t mean I am particularly brilliant in general, but that’s for another article).

In no particular order, some of the holes in my knowledge have included:

-thinking that the District of Columbia was a tropical island.
-not realizing that the name Boo’s for an alcoholic beverage store was not just a cute nickname for someone’s partner but was also a joke pertaining to the word booze. I figured it out one day after passing it for YEARS.
-thinking that a beer garden was a place to sit outside and enjoy nature while also drinking a beer.
-identifying cars only by color. I STILL do this.

There’s more, but I am already embarrassed to have shared these. So why have I shared them? Because I want you to know that EVERYONE has holes in their knowledge. EVERYONE.

Sometimes when living the special needs life we run into people that APPEAR so SNOOTY, so INTELLECTUALLY ABOVE EVERYONE IN THEIR OWN MINDS, that we can feel inadequate. Small. Less than. Not as qualified.

Have you met these folks?

Maybe they work in your child’s school. Maybe they are therapists. Doctors. EXPERTS. They speak using big, area specific vocabulary that you may not know. And the way they present themselves, you don’t even want to ask because they make you feel so DUMB, so much LESS THAN, that you cannot bear the thought of proving your inadequacy by telling them that you have NO IDEA WHAT THEY ARE TALKING ABOUT.

So you don’t ask. And because you don’t ask, you still don’t know what they are talking about.

But, here’s the problem. What if they are talking about your child? What if you need to know the information to make a very important decision?

I want to tell you something. Not only do you have every right to ask people to clarify what they mean if you don’t know, these folks HAVE AN OBLIGATION to explain things in a way that you can understand. And most of them actually want to. They often don’t realize that they are intimidating you. And they sure don’t know that you don’t understand unless you speak up.

So ASK. Because you need to know the answers.

And, on the off chance that one of these professionals is snooty to the point that they sigh, or roll their eyes, or seem bothered by having to break it down for you, guess what? You can FIRE THEM. And you should. Because your child is the most important person in the world and deserves only the BEST on their team.

What do effective caregivers do when they don’t understand what is going on? THEY ASK. This is what sets them apart from the rest of the crowd. Remember, I have a Master’s Degree IN EDUCATION and have no idea what half the acronyms mean that are thrown around in school meetings. So I stop them. I literally say, “I have absolutely no idea what you mean. Could you explain it to me?” It is THEIR JOB to make sure that I understand what they are trying to communicate. Same with therapists. And doctors. And hospital staff.

We as caregivers simply do not have the luxury of playing along to save face. The most important person in the world is counting on you. Your CHILD. You are the expert on your child and they are the experts in their chosen areas. You are a team.

You are equals. Don’t ever think otherwise. Now go out there, get clarification and continue to kick ass.

Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!

My daughter, Amaya, is 9 and a half years old (the half is very important). She is bright, brilliant and beautiful. She loves girly things such as sparkles and unicorns. But she also is a talented Tae Kwon Do student, loves to play Minecraft and is on a math competition team at school. Did I mention that she had straight A’s the entire school year last year? As you can surely tell, I am enamored. My amazing daughter rocks my world.

But there is something else that makes Amaya incredibly special and different from her peers. Amaya is big sister to a brother with special needs.

I doubt that Amaya remembers a time when Kai wasn’t in her life. They are only two years and eleven days apart in age. And we discovered Kai’s first diagnosis (he has about 8) when he was 18 months old. So Amaya was 3 1/2 at that time. And that means, her memory of her entire life has always included a younger brother with a “special brain.”

We first told Amaya that Kai had a special brain when she started asking questions like, “Why isn’t Kai walking yet? Why isn’t he talking yet? How come my friend’s little brother or sister is doing FILL IN THE BLANK HERE but Kai isn’t?”

We simply said that Kai was born with a brain that is special and different than other people. And so he may or may not be able to do these things. And that this was OK. And that we loved him just the way he was. And little Amaya just went with our flow. “OK!” she said. And it was no big thing.

As time went on, the differences became more obvious. Kai was stimming. He was choking at mealtimes. He still wasn’t walking. Or talking. Amaya would explain to anyone who looked at Kai (and people were starting to, because he was starting to look very different) that Kai had a special brain and that he just did things a bit differently. Her friends were usually very accepting once the brain situation was explained. Their parents, well, they had a harder time with it. But most of them came around.

We (Mom and Dad) got shirts that said #TEAMKAI on them. Amaya wanted to know where the #TEAMAMAYA shirts were. We tried to explain but that one was a little tougher. As she matured, the question changed to, where was Amaya’s #TEAMKAI shirt? She was starting to understand.

Eventually, she got a little jealous. He was getting a LOT of attention and even though we always made time for her, sometimes it was hard. We were often focused on Kai, his rotation of EIGHT different therapists that traipsed through the house on a weekly basis and his tiniest achievements created an uproar of celebration. Why was his brain SPECIAL? Wasn’t Amaya’s brain SPECIAL too?

In a moment of deep sadness and at a loss for a better explanation, I had to explain that while we used the term special, we could also use the term broken (I was trying to SIMPLIFY to a level that young Amaya could understand and I hated saying it that way but she needed to understand). Kai’s brain was broken. It didn’t work like our brains worked (to this day, that statement makes me ITCH but I did the best I could. After all, what one person says is broken, another person could say is fabulously different). Amaya seemed to really grasp the situation after this explanation.

As time has progressed, Amaya has become an incredible support for Kai. Kai is a side by side player, which suits Amaya just fine. They do their separate things in the same room and they coexist happily. Amaya is a caregiver for Kai. She takes his tablet away at bedtime and tells him, “Tablets all done,” in a sing-song voice. Kai sees this as a sign that it is time for bed. She guides him to the places we need him to go, runs to grab things from him that he shouldn’t have, steers him out of the bathroom where he likes to play and make a mess and she does it all with kindness and a sense of humor.

Amaya often has to give up a lot because of Kai. Even though she is 9 1/2 and Kai is 7 1/2, we cannot go to a movie because Kai is developmentally about 18 months to two years old and cannot sit through one. Amaya needs to either not have small toys or hide them because Kai could choke on them. Sometimes we don’t go to events because Kai wouldn’t do well at them. Or we go but leave early. Kai will steal cookies off of her plate. Amaya stays calm because the house rule is that if Kai steals food off of your plate, you get replacement food, no questions asked. She runs for bags for dirty, poopy diapers and takes the full ones to the trash. She tolerates the spectacle that Kai makes when we bring him to the Dojo for her karate class and he is loud or lays on the floor. And she knows that this is part of living the special needs life.

Even though Amaya is so young, we had to have a really hard conversation. Because eventually, her Daddy and I will die. This is life. And we need her to care for Kai. She does have three adult siblings (I married a man with three kids and he had custody of them) and the oldest is the first caregiver assigned. But eventually, in her twenties, Amaya will take on a stronger role. When asked, she agreed to this immediately and sometimes questions how she will handle this. I have told her that I will make sure she has enough money and lots of instructions and that her siblings will support her. But it’s a lot to ask. She didn’t commit to having this responsibility when her father and I decided to have a baby, we did. But, we have no choice. We won’t live forever and we expect Kai to outlive us. It weighs heavily on my heart. But there it is.

Today, Amaya had no school. Kai did. They are on different schedules because Kai goes to a completely special needs campus (no inclusion for my low-functioning angel and that is the right placement for him). On days such as this, where Kai is otherwise occupied, we try to do things together that we can’t do with Kai. We went to the Halloween store and picked out the accessories for Amaya’s Halloween costume. We went to a movie, played games in an arcade and went out to lunch. Just Daddy, Mommy and Amaya. It is a glimpse of what it would have been like had we never started living the special needs life. Just doing normal fun things without having to worry how Kai will handle them. How we will adapt our day for him. If we would have to leave early. And, of course, the usual stares in public are gone during this time. We just blend in.

If I sound sad about my life, I would like to let you in on a little secret. I am not. I missed Kai the entire day. I love our special needs life. But, while Amaya doesn’t know any different, I do. And, sometimes, we need to carve out special time and treat this amazing daughter, with the huge heart, incredible brain and talented, creative soul, to a day where it’s all about her. She deserves it.

My daughter is an incredible Special Needs sibling. I am so honored and awed that I have been given such an amazing girl.

Do you have a someone in your life that is an incredible Special Needs sibling? Please share in the comments below.

Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!

I hurt my knee. I have this ongoing goal – I want to be able to pick up my son and carry him for as long as I possibly can. You see, even though he is seven years old, he has eight different special needs diagnoses. Developmentally he is about 1 1/2-2 years old. And he loves to be held and carried and loved on. And as his Mommy, I love to do this. But it kept getting harder as he grew. So I decided to get in better shape.

I know that when you begin to get in shape, you need to start where you are. So last fall, I started out walking for fifteen minutes a day. That was where I was at, after a few very rough years where the last thing that I felt that I had time for was to take care of myself (I was SO wrong, but that is a discussion for another time). My ability level was low, my weight was high, my exhaustion level was higher. But this new goal, to do this for my son, was unlike any other goal I had ever had before. It wasn’t about fitting into a pair of jeans. Or looking pretty/sexy/normal/whatever. It was for my boy, the most important person in my world. For him, I would and will do anything. So I decided to do this.

After several months of walking, I was able to walk for almost two hours a day. Just walk. No swinging arms, no speedy hips, no fancy moves. So I added in light weight lifting. But I wanted more direction. So I hired a trainer. It just so happens that this incredible woman owns her own Crossfit gym. And after working out with her for a couple of months, I decided to go for it. I went to a Crossfit class.

Crossfit, to me, had an intimidation factor that was pretty high. It is almost a status symbol that you do CROSSFIT. It is pictured in social media as a brutal workout, done by those crazy gym rats. You know the ones – ripped bodies, protein shake chugging, rep discussing, intimidating as hell. I don’t think I would have even considered it except that my trainer was so phenomenal, I knew she wouldn’t recommend it to me if she didn’t think I could do it.

Guess what? I can do it. And so can you.

If you think for one second that the intimidation factor of entering a Crossfit gym is even CLOSE to what you have experienced as the parent/caregiver of a special needs child, you are wrong. Nope. Not even close. Remember that deer in the headlights, stomach sinking feeling when you found out that your child was different? That you were now in charge of someone who needed help with ADHD/Autism/PVL/CP/a trach tube/Extra Chromosomes/Not Enough Chromosomes/fill in the blank with your chosen term here?

I walked in. I felt the fear, the intimidation and I did it. I LOVED it. And believe me, if I can do it, anyone can.

I can pick up my son. I have to keep going, though, and one day I will lose this game, because he will simply outgrow me. But not yet. Not yet.

But there is that fear of getting hurt. Of having a setback. And when you are on the path and you’ve got everything going and things are humming along, setbacks suck.

I hurt my knee yesterday. I have class tomorrow. I REALLY want to go but… my knee.

It makes me think of when my son has a setback. Does your child have them too? Does your child forget what they have learned over a school break? Does your child start to speak and then stop, having to relearn how to say things over and over again? Do they totally get a concept one day, only to lose it on another? Or can they do certain physical movements sometimes and not at all at other times? Eat without choking on Monday but choke on everything on Thursday?

What do we do when this happens? Do we quit? Nah. WE DON’T HAVE THAT OPTION. We take a break, we rest, we regroup. And we try again. And again. Because this is our CHILD that we are talking about. There is no choice but to keep going.

So why do we give up on ourselves?

Why do we stop taking care of ourselves?

People are scared to get hurt. Look, no one likes to get hurt. I hate it. I am limping around the house, using ice and ibuprofen and a knee brace. I am in pain, stiff and irritable. But, what if last fall, I never started from fear of the unknown? Fear of getting hurt?

Setbacks suck. But you know what sucks more? Not coming back from a setback. This goes for your health, your emotional state, your monetary situation, your relationships woes, everything.

Without a doubt, YOU WILL HAVE SETBACKS IN YOUR LIFE. And, of course, your child with special needs will as well. This is unavoidable. But you know what IS avoidable? A setback becoming a downfall.

Tomorrow I will limp into Crossfit. And I will do what will probably be a very challenging all upper body workout. As my lower body heals.

Rest. Regroup. Return. Someone incredibly important is counting on you.

Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!

Expectations are a funny thing. When you have high expectations, people tell you that you are impossible and that you need to lower them. When you lower your expectations, you get what you allow. So, you may have more company, but the quality suffers.

I have found, for me, that while living the special needs life, my expectations have GROWN tremendously when it comes to other people’s behavior. I simply don’t have time. My son, my shining star, comes first. The rest of my family is a very close second. And that leaves a very small amount of time for others.

So when someone doesn’t live up to my expectations, which admittedly are very high and always have been, I am more apt to leave than ever before in my life. I am also at a stage where I have a clear idea about what behaviors are tolerable and what are, simply, not.

If you are struggling with the behaviors of those around you, you are not alone. It is so tough when you are operating at a certain level of expectations and the people around you aren’t even close. But I urge you to keep those expectation levels high. Doing so helps to weed out people who aren’t deserving of your time. Especially if you are one of those that have a lot to offer in relationships with people, KNOW YOUR WORTH.

When is it time to let someone go? When you find yourself feeling uncomfortable or dissatisfied when you think of them. When you find yourself using the phrase, “If only.” As in “if only” they would do this instead of that. “If only” they were honest. “If only” they did the job like they were supposed to do. “If only,” they were warmer, more approachable. “If only” FILL IN THE BLANK HERE. This applies to relationships with your child’s teacher, caregivers and therapists but also in personal relationships. When else should you let someone go? When you feel belittled in their presence. NO ONE should behave in a way to make you feel small. We haven’t got time for that. It is not allowed, at least not in my world. And it shouldn’t be allowed in your world either.

By letting someone go who SUCKS, you are making room in your life for someone who DOESN’T SUCK. They may be hard to find but keep searching. You know how when you go shopping for clothes you have to go through the racks, sliding over items, one at a time, rejecting, rejecting, until, AHHH! You have found the item that is perfect for you! And then you try it on. Maybe it’s perfect, maybe it’s not. If not, you put it back and you keep on looking. Maybe you won’t find a perfect item of clothing on that shopping trip. If you don’t you look somewhere else. Or you try another day. Or, maybe, you love something, buy it and bring it home to find out that it shrinks in the wash. It misbehaves. You don’t think that the problem is YOU. The problem is the item. So when you find someone who misbehaves, a person who SUCKS, or even a bunch of people who SUCK why do you think that the problem is you? It’s not. You just haven’t found your one yet. Whether they be the perfect occupational therapist for your child, a life partner or a friend.

THINK about what your expectations are. EVALUATE the people who are bothering you. ATTEMPT to solve the problem and see if their sucky behavior improves. REEVALUATE and see if it worked. And if it didn’t, make some CHANGES.

You DO NOT have to put up with people who SUCK. So don’t. We have enough on our plates without them.

Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!

No matter what I do, it’s wrong. It’s not enough. It’s too much. It would have been good if only… It would never have been good, because…

My relatives make more money. This is why I am not good enough. My son with special needs is not potty trained and the reason why is because I HAVEN’T SPANKED HIM ENOUGH. My son with special needs is starting to become potty trained at school. Well, of course, they say, he’s gonna figure it out eventually (even though many never do).

I am too fat. Then, when I lose weight, I am too thin. If I work hard for something, I am working too hard. After all, I am the glue that holds this family together and if I explode, then what? No pressure.

I should do everything in moderation, I am told. Except then, when my results aren’t impressive, I should be doing more. BUT NOT TOO MUCH! Just more. But, you know, also less.

I don’t share things enough. But when I share them, I am told why they are not good enough. So then I stop sharing them. And then, I don’t share things enough.

I hurt. I want someone to say, “Attagirl!” when I accomplish something. But they never say what I want them to say. They never do what I want them to do. And round and round we go.

I created a blog that I am extremely proud of. The response is, why am I not writing a book? (I am, but it’s currently at a stand still, I’m distracted) I returned to playing the piano after overcoming anxiety, 27 years later. I was proud. The response? Why did you accompany someone else and not solo?

I have a Master’s Degree. Why didn’t I get a Doctorate? I have a son with special needs. Well, isn’t that just too bad? The worst thing ever. (It’s one of the coolest things ever. I know that sounds strange but it is.)

You know how some people just get you and get it and some people just don’t? And you try and you try to explain yourself and somehow they just don’t want to hear what you say. And then they accuse you of not wanting to share?

Yeah. It sucks.

Here’s the thing. I know what the problem is. You think the problem is them, right?

It’s not.

The problem is you. And me.

When you seek validation from others you set yourself up for the whims of the feelings those others have. Their whims could fluctuate from day to day, hour to hour or minute to minute. And it can make or break your entire day, week, month, year or life when your self worth is wrapped up in their whims.

Easy to separate yourself from needing outside validation? Heck, no. Worth it? Absolutely.

Am I good at it? No. But I’m getting better at it. I try to think about how I feel about what I accomplish and how I am running things in my life. Would I want it to be different? Do I like what I have accomplished? Do I want to make changes? How moderate do I want to be about them? Do I want to make extreme changes?

The only one living your life is you. OPO (Other People’s Opinions) can be valuable but your choices ultimately affect you and you’re the one who has to live with them.

So seek validation carefully from valuable people that you trust. The others? Nod and smile at what they say and try to go on your merry way.

Except for parking. ALWAYS seek validation for parking if it’s available. Parking is expensive.

Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!

The other day I was sitting in a diner in a suburb of Ft. Lauderdale, Florida, on a quick trip to take care of some business. I was taking a bite of salad when behind me and to my left I heard a sharp clinking sound. It was the distinctive sound of keys hitting marble. I turned my head and noticed that at a table nearby, someone had dropped their keys to the floor. I also had previously noted that both men at that table were in wheelchairs.

It is my usual practice to help folks, because, well, why not? So I put my fork down and slid out of the booth. I didn’t make a big deal out of it. I simply went over to their table and bent down for the keys. As I stood up, my eyes met one of the men’s eyes. He was a handsome guy, maybe in his mid-thirties with an engaging smile. I held the keys out to him. He said, “Thank you,” and proceeded to use both hands, with difficulty and no visible strength in his grasp, to hang onto the keys. Cerebral palsy? Maybe. Anyway, that was how it appeared.

I said, “My pleasure. You got them?”

He said, “Yes.”

I smiled at both men, went back to my table, sat down and picked up my fork.

It was no big deal and I wouldn’t even remember it right now except that was when my dining companion said in a quiet voice, “That is such a terrible thing.”

“What is?” I asked.

“Having to live that life. It’s such a terrible life,” he said.

This floored me.

My son, Kai, is seven years old and has special needs. We have wracked up eight different diagnoses so far, including PVL (Periventricular Leukomalacia), Duplicate Chromosome 16, Autism, Apraxia, Sensory Processing Disorder, Speech and Feeding Disorders and more, plus developmental delays in all areas. Often, when we go out in public, he will stim and make loud noises. He will lay on the floor or sometimes the ground, because that is where he is comfortable. Adults look at him and then look away. Sometimes they give me a quick smile first. They often look as though they feel awkward. Kids stare at him and will often come up to me and ask, “What’s wrong with him?” I love it when they ask because then I get to introduce them to Kai and explain that he has a special brain and probably won’t talk to them but that he is very happy to meet them. The adults with those kids usually hush them because THEY feel uncomfortable.

It never occurred to me that other people might think that because Kai has special needs, he has a terrible life.

Kai has a WONDERFUL life. You have never met a more content and happy little boy. He has very simple needs. He wants milk in a sippy cup, his tablet for educational videos and cartoons, his favorite foods including canned pasta, vanilla wafers, bananas, pudding and applesauce and a chair that rocks. He is extremely affectionate and as long as he has his family around him, or is on the school bus that he loves or in his classroom with his favorite teachers (on a special ed campus, no inclusion for him), Kai is good. He wakes up with smiles and kisses for us every day. Sometimes if he can’t communicate what he wants he may get frustrated but tantrums are short and usually get resolved well.

Does Kai suffer? Well, he has had two mild seizures, both of which he has come out of well, even increasing his verbal word usage the next day. Other than that, no. He is blissfully unaware when people look at him. He is not interested in parties and doesn’t know if he’s not invited to one. If he is invited to one, he will stay to himself and smile, content. He likes people, but other then family, he’s not really interested in people. He doesn’t care about presents. It is hard to buy him anything because he has few needs and even fewer wants. He doesn’t want to unwrap a gift. He doesn’t care if other people get gifts.

Yet, he is a gift.

He spreads sunshine wherever he goes. His smile and laugh are infectious. For everyone who stares, there are just as many, if not more, who smile when they see him.

But I guess, upon further thought, maybe people think that because he has special needs, his life is terrible.

My dining companion thought those men in wheelchairs had terrible lives. Is it true? Who knows? But that is kind of the point. Disability does not mean a terrible experience. And, further, the most able-bodied, able-brained (is that a word? I may have made that up) person in the room could have a terrible life. Or a great one. Or an average one. There is just no way to know by looking.

So, my point, in a nutshell, can be summed up by my nine year-old typical daughter who recently said to me, “You can’t judge a book by its cover and you can’t judge a child [or a person] by their difference.” How do you like that for wisdom?

As for me, when things fall, I will continue to quietly pick them up. I invite you to do the same.

Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!

I feel intimidated.

This is not a frequent occurrence for me. I tend to go for things. I make a decision, take the steps, walk the walk, make mistakes, fix the mistakes, do the thing. In fact, today I deadlifted with my trainer at the gym. I have been working up to this for months and it was my very first time. I am so proud of myself.

But somehow, I am sitting here, staring at a box across the room and I have to admit, I’m intimidated. Which is why, although I have had opportunity, I have yet to open the box.

If I open the box, the unknown path begins. I have to unpack the box, pull out the stuff, set up the thing, figure out how to operate it, practice and make mistakes, fix the mistakes and make the thing. Hmm… very similar to how I created this blog.

What am I committing to doing when I open the box? I am going to MAKE my son’s back-zipper pajamas. And I don’t know how to sew (except for the occasional hard-won button). And I haven’t a clue how to use a sewing machine. But a brand new sewing machine is sitting in the box.

WHY IN THE WORLD am I doing this? My son, Kai, who is seven years old and has special needs, needs pajamas that he can’t get into. To keep him out of his diaper. Which, when he gets access to it, can mean a horrific cleaning event at 3 AM. Or 3 PM. So we bought them. There are few companies that make them. The prices are high and the shipping ridiculous. The quality is sub par. But we finally found a company that made them well. And they lasted. Except now Kai has grown. So we need to get bigger ones. And, of course, that company no longer makes them.

I can have them shipped from England for about $60-$80 American. Plus shipping. I can buy them Made In America. I did. Sorry, but they suck. The arms are too slim, the body extra long. They are flimsy. That was only $32. Plus $8 shipping. For one pair. Like having a baby, there are often nights where one pair just isn’t going to cut it.

This ongoing fiasco is annoying and upsetting. We never know where or when we will find this item and it is ESSENTIAL. Don’t see how back-zip pajamas could be essential? I invite you to come care for Kai for 24 hours without them. But you have to clean up the mess. Deal? I didn’t think so.

After asking everyone under the sun if they could possibly make these, after asking for lessons from my former neighbor’s mom (who graciously tried hard to show me how to sew but I had a sub par, hand-me-down machine older than me that we found out later had a broken tension setting), after spending money for not much product with low quality, after cleaning up more messes, I am done. If I learn how to make them, I can make them for Kai for the rest of his life. Growth spurt? No problem! This is the vision.

I KNOW THAT I WILL CONQUER THIS. I AM LIVING THE SPECIAL NEEDS LIFE. IF I CAN MANAGE 24/7/365 CARING FOR A CHILD WITH 8 DIAGNOSES AND CAN WORK UP TO A DEADLIFT AND HAVE A MASTER’S DEGREE IN EDUCATION AND CAN MOVE FROM BEING A NATIVE NEW YORKER TO LIVING IN A MOBILE HOME IN THE MIDDLE OF THE WOODS IN EAST TEXAS, I CAN DO THIS.

Damn, that box is intimidating. It’s like it’s looking at me, going, what? You scared?

Yeah, I am.

The last time that I really attempted to sew was in Home Economics class where Mrs. Gagliardi had us make cat pillows. My thread got all bunched up. My cat pillow had large gaping holes. It was a disaster. I was 12. I am currently 46 years old.

I have been thinking lately about fear of the unknown. And how it pops up at the most interesting times. For some reason, I fear failing at this endeavor. Maybe because I feel like the stakes are high. Nothing else has worked. What if THIS doesn’t work? That’s a lot of pressure to put on myself. I mean, I know I’m not Suzy Homemaker, but, damnit, YouTube even has a tutorial that shows how to take MY EXACT SEWING MACHINE MODEL out of the box and set it up. It literally shows you where to plug in the cord. It ain’t rocket science.

Isn’t it funny what makes us suddenly pause? Freeze?

No matter the endeavor, the process is still the same. You set the goal, figure out the steps to get to achievement of the goal, START, take the steps, make mistakes, fix the mistakes, KEEP GOING and eventually you achieve the goal. I think that there are two steps that are the hardest. One is STARTING. The other is KEEP GOING.

I haven’t STARTED. Even though I know that setting up my new sewing machine, the one with the perfect tension setting, sitting across the room in the box, will be simple. After all, a female who looks about TWELVE YEARS OLD made the YouTube video and broke it down to the point that the steps would be too simple even for a dummies or idiot’s guide. Just FYI, I am a huge fan of guides for idiots and dummies.

I also am worried that I will make a mistake in the middle of the project and won’t be able to figure out how to fix it. I envision tons of bunched up thread, fabric crushed into a three dimensional shape and accidentally sewed that way. And then what? What will I do then?

Intellectually, I know that I’LL FIX IT. Somehow. Or start again. Or find another YouTube video. But, emotionally, I have fear.

Fearing the unknown, the new, the untrodden path, IS NORMAL. We all feel this way sometimes. About the strangest things. I am NOT afraid to admit that I have these feelings. I mean, don’t you have them sometimes? Didn’t you have fear of the unknown when you found out that the one you love most in the world was going to be different than you anticipated? And you had never been a caregiver before. But, you’re doing it, aren’t you?

Yeah. Me too.

So right now I am a dreamer. But THE DIFFERENCE BETWEEN DOERS AND DREAMERS IS ACTION. So I have to force myself to START. And then to KEEP GOING.

One day (hopefully soon) I will look back on these feelings and laugh as my son runs around the house in his back-zip pajamas, smiling his sweet, amazing smile. Right now, I am staring down a box.

The box cannot be allowed to win. The box WILL NOT WIN. Hand me the remote. I need to look at the YouTube video again. And START.

Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!