Priorities vs. Resolutions

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!

Holiday Wishes of a Special Needs Mom

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 Special Needs Community Has So Much Love To Give

*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!