Month: September 2019

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!