When you think of amazing life milestones, one of the major things that they have in common is hope. Getting engaged gives two people a sense of what is possible in the future for them together. A wedding is the next step in that. A teenager going off to college, someone buying their first home, all of these things and much more are doorways to hope for good things to come.
Nothing is a better example of this than having a child.
Going through a pregnancy or an adoption and having a child is the ultimate in hopes and dreams. You wonder – what will the child be like? What will their interests be? What will they achieve? Will they change the world? Become a leader? An artist? A doctor? You fantasize about everything that your child can possibly be.
Except a child with special needs. No one fantasizes about that. No one hopes for this for their child. And most of the time, it doesn’t enter the consciousness at all that it could be possible, except as a fleeting thought that is easy to dismiss. Nah. Not MY kid.
So when it happens, there isn’t a whole lot of hope present. Rather, it feels as though it is the dashing of hope. The dashing of dreams.
It feels that way because what you envisioned may not come to pass. But your vision was a fantasy of the person your child could be. Not who your child is or will be.
Just because your child has special needs, even if they are low functioning, like my son, it doesn’t mean that there is no reason to have hope. In fact, a lot of the hopes you can have for your actual child will be similar to the hopes you had for the child you envisioned.
Your child with special needs can be healthy (or healthy, for them). They can be happy, especially if they are honored and valued as whole and complete people (which they are, in their way). They can give to the world (things like joy, companionship, insight, and whatever their individual gifts end up being). Just like a typical child.
It probably isn’t going to look the same. But that’s OK. Every child is unique. Typical or atypical. And there is always hope for good things to come.
Don’t give up hope. Re-envision it.
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 was scrolling through Facebook and came across the question – What is your favorite thing to do on a day off? It stopped me in my tracks.
Day off? What’s that? I am a special needs Mom. I do not work outside the home. And my son goes to school. But because he has had seizures in the past, I am constantly on call. 24/7/365. So even if I want to nap during the day, I have to leave the ringer on in case the school calls.
When I try to think of what I do, I can’t really tell you. I often feel like I DON’T DO ANYTHING. I am just ever present. I am here for interaction. Diaper changes. Food dispensing. Love and affection (which I affectionately love, don’t get me wrong). Teachable moments. Laundry, dishes, cleaning (none of which I excel at, have organized, mastered or particularly care about, if we are being honest).
If I stay at home and don’t work outside the house, financially we receive affordable health care, diapers provided by Medicaid and other benefits. Our financial situation is close to the bone. But if I work outside the home, we lose the subsidies and extra help. All of our expenses then go through the roof. So, in order to make it worth my while to work outside the home, I have to earn an income that would be difficult to find, certainly unavailable in my chosen field of education. Same goes for my husband, who is battling a long term illness.
So, we don’t. My husband and I are both stay at home parents.
Right around the time that my son was diagnosed, we cared for my mother who had Alzheimer’s disease. I went to work, my husband stayed home to give care. I used to go to work to relax, if you can believe it, as I taught PRE-K. That was the amount of stress and pressure that was at home.
Nowadays, with my Mom gone and my son in school during the day, things are less pressured but the pressure is always still there. I am ALWAYS ON CALL. Even if nothing happens. Which means that I never completely relax. EVER.
I just stopped writing for a good twenty five minutes to change a poopy diaper, dodge an epic meltdown because I cut off the milk supply (it’s almost bedtime) and finally settled back in my chair while my son works off his anger at being told no in the bedroom. OK, I guess THIS is what I do.
But getting back to the favorite things to do on a day off, I remember back before I was a special needs Mom and I HAD days off. I liked to sleep in, read, take walks, go to garage sales, meet friends for coffee and other simple things. I have never been one to need copious amounts of adventures, although I certainly had my fair share. Simple appeals. Especially now.
Thinking about this makes me realize that for the longest time I didn’t do any of those things. I just relentlessly focused on my son, his needs, his therapies, his choking, his lack of progress and what I needed to do to FIX things. Eventually, our new normal settled in. And I missed myself.
But I realized that having a day off wasn’t going to happen again for a long time, if ever. So there had to be a way to still enjoy life in our new normal. So I created “pockets off.” That is, pockets of time to be off.
I actually just named it now. I didn’t realize that I was doing it. But now I see that I did.
During the school day, when my son is gone, my husband and I try to have date time. We may go out for breakfast or go to the gym together. If we nap together, the phone has to stay on, which means any phone call we receive will interrupt us but if we take turns napping, the napper can give the one staying awake the phone. Then the one sleeping will only have to be disturbed in a true emergency.
Bedtime is reading time. When everyone finally gets settled in (no small feat!), I read. I also try to read during the day when I can.
If you aren’t getting a day off any time soon, is it possible that you could find a pocket of time for yourself? Even if it is a short fifteen minutes? What did you used to do on a whole day off that you could modify in a shorter time span for yourself right now?
Instead of meeting for coffee, maybe you could Facetime a friend, coffee in hand. Instead of going out to a movie, Netflix means that you can pause as many times as you need to or even come back to it later. Microwave popcorn optional. If you work outside the home and parent a special needs child, maybe you could arrange to leave fifteen minutes earlier at the end of the work day and just spend the time on a park bench, until it is time to pick up your child. The tendency will be to cram in yet one more thing in that fifteen minutes but try really hard not to.
Even if you have absolutely no time and must multitask, you could listen to books on tape or podcasts during your commute. It is so hard to think about yourself when you are always focused on the most important person in the world, your child, but caring for yourself makes you a better parent. So, in the end, your child benefits from this, too.
These pockets of you time are important. They refresh you. They remind you that although you are a special needs caregiver, you are still you.
What do you enjoy doing during your pocket of time off?
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!
It is a new year and a new decade. Just a little over a week in. A little over a week ago, people were talking about how 2020 was going to be their year! It was going to be so much better than 2019! They made resolutions! They made decisions about making changes! They were pumped!
It is a little over a week later and they are already “disappointed in 2020.”
No pressure on the new year. But they wanted their changes, their accomplishments, their blessings – right NOW.
Realistic? Not so much.
A goal without a plan is just a wish. I didn’t write that but I see it all over the place and if I knew who did write it then I would give them the credit. Since I don’t, let us all just take a moment and admire the nameless person who wrote this.
Because it is SO true.
But what happens when you make a plan and it doesn’t work out the way you wanted it to?
Right now, all over the country, people are joining the gym and exercising like mad. THIS IS THEIR YEAR to get in shape.
All over the country, special needs parents are working hard with their children, thinking that THIS IS THE YEAR that they will learn to count. Or walk. Or eat without choking. Or learn to speak. Or FILL IN THE BLANK HERE. Because THIS IS THEIR YEAR.
Right now, people are enthusiastically joining dating websites. They are going to meet their life partner. Because THIS IS THEIR YEAR.
Does this sound familiar to you? Do you see it happening around you? Do you see yourself doing it?
There is SO MUCH PRESSURE.
And then comes the “failure.” Another breakup. A missed workout. A “bad food” event. Your child knew how to count to five yesterday but only to three today.
So what do people do? They quit. And suddenly 2020 SUCKS DOG.
Here’s the thing. I like goals as much as anyone. I make them for myself all the time. But I have never met anyone who reached a goal in a smooth, perfect, flawless way. Have you? Ever met someone who reached a goal without ANY setbacks. No mistakes?
The key to achieving a goal is to overcome a setback, whether large or small. The people who win at this game are the people who fall down and then get back up and try again. Consistently. These achievers also are willing to give up the method that they were using to get to the goal and try other things to get there. They are willing to be flexible in their methods. They will try other paths to get to their goal.
Here is an example. When I was still teaching, I once had a student who was in the process of being diagnosed as special needs and put into a program but hadn’t quite gotten there yet. She was able to learn but it happened VERY slowly. I was working with her one on one and she was learning how to count. We counted objects, used Touch Math, used charts, counting videos, did exercises while counting and more. Most of it seemed to not be working. She would occasionally be able to count to a higher number but would often forget what she was able to achieve during the last session. And then I finally got her to be able to count to twelve consistently. Every little step was a victory and we celebrated like mad whenever she was able to do something new.
And then all progress stopped. For SIX WEEKS.
Think about working intensely on something and seeing no visible progress for SIX WEEKS. Would you want to quit?
What if quitting wasn’t an option?
We couldn’t change the goal. She needed to get to thirteen. But how we got there was FLEXIBLE. We tried all kinds of things and threw out what wasn’t working. We took breaks. We tried new things. Because IT IS NOT A FAILURE TO THROW OUT WHAT ISN’T WORKING AND FIND SOMETHING THAT DOES.
You know what guarantees that it isn’t going to happen? When you stop trying.
The day my student counted to thirteen I felt like I won the lottery.
I urge you to be flexible in achieving your goals. Allow yourself room for setbacks and know that if you continue to persist you will have a comeback. As a very wise person that I know says, it is about progress, not perfection.
Recognize that the tiniest step toward your goal is a win.
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!
