Month: July 2019

The other day I went to the doctor for an annoying chest cough that I’ve had for over a month that I just couldn’t seem to kick. The nurse and I were discussing the fact that I work out five days a week, one of them being with a trainer. She told me how she has wanted to lose some weight but that she just can’t seem to find the motivation to do it. I have been thinking about this.

Especially when living the special needs life, if you wait for motivation to strike, it may never happen.

This concept isn’t just for weight loss. It is for potty training your child who doesn’t understand the process. It’s for avoiding brushing their teeth because you get hurt in the struggle on a daily basis. It’s that doctor’s visit for your child that you keep postponing because you are dreading the visit and the meltdown it entails.

But it’s also for your own self care. Waiting for motivation to eat healthier? How about replacing your maternity clothes, even though your youngest child is four? Waiting for motivation to exercise?

Here’s the thing. Motivation is not a friend who comes over and knocks on your door and all you have to do is let them in. Sometimes motivation just doesn’t show up at all. But the difference between being a dreamer and being a doer, is showing up to what needs to be done, regardless of how you feel.

Think you can’t do this? You already do. If you have ever held a job, you showed up for work, motivated or not. If you ever attended school, same thing.

But just like the smell of coffee in the morning can motivate you to get out of bed sooner, you can build some motivation into your day to make it easier. Teachers do this all the time. They use sticker charts and individual and class rewards to help motivate their students. You can do this, too.

What helps you get going when you just aren’t feeling it? Here are some suggestions to kick start your thought process:

• shorten the task into smaller steps
• share the task with someone else
• reward yourself for a certain amount of times of trying, even if the goal hasn’t been reached (i.e. – you put your child on the potty five times in three days so you get Starbucks! Netflix! Whatever you decide!)
• Start where you are. Haven’t worked out in years? Decide that for the next week you will walk to the corner and back. That’s it. When you complete that add in two extra minutes a day. Build on this. It counts!
• Be careful who you compare yourself to. Sometimes when you look at someone who is deeply into their own process (marathon runner friend, we’re looking at you!), it can make you feel even LESS motivated. Use the people around you for inspiration but if this happens to you, find someone who is just a little ahead of where you are in whatever process you are trying to accomplish. Less intimidating.
• Forgive yourself for dropping the ball for whatever goal you wanted to accomplish. Now, pick the ball back up. TODAY. And keep going.

How do you handle things when you lack motivation? 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!

If you were going to hire someone to care for your child with special needs, what would you want them to be like? I know that some of the things that I would require include being healthy. I would want them to be well-rested. Able to think on their feet. Physically strong. Mentally, in a good, positive head space. Of course, I would also want them to be educated in my child’s diagnoses, able to be flexible as things change day-to-day (or sometimes, hourly) and able to go with the flow.

I also know that choosing a caregiver for my child with special needs is a daunting task. I can’t just leave my child with an average person. It isn’t the same as finding childcare for a typical child. If I needed to find a caregiver, I would be super picky. I would have very high expectations.

So, why then, do we treat ourselves, as our children’s primary caregivers, as an afterthought?

When living the special needs life, it is a natural choice to put ourselves, the caregivers, last. Because it is all about our amazing, wonderful children. It makes perfect sense, at least on the surface, that we come last. But this brings me to a highly clarifying question – in the current state that you are in, would you hire you?

Are you keeping yourself in good physical condition? Are you getting enough rest? Are your needs being met so that you can have a positive outlook? Is your cup filled and overflowing so that you can give without running dry? Or are you, in your current state, looking like an afterthought?

NO ONE, INCLUDING YOU, SHOULD TREAT YOU AS AN AFTERTHOUGHT.

YOUR CHILD DESERVES A BETTER CAREGIVER THAN ONE WHO IS AN AFTERTHOUGHT.

It is counter intuitive, isn’t it? Your intuition says to give and give and give. Don’t take time away from your child for yourself. They come first.

What if I told you that by taking time away from being a caregiver to care for yourself, you are actually putting your child first?

Why? Because by taking care of yourself, you are giving your child the best caregiver they can possibly have – it’s the best version of you. Guilt be gone. It’s for you, but it’s also for them.

When you get caught up in everything, when you are exhausted, when you have created your new normal again and again, take time for a reality check. Ask yourself – would I hire myself to do this job in my current state? If your answer is no, it’s time for some self care.

You are not an afterthought. Treat yourself accordingly.

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 man pays. The woman does the housework. He works. She cleans the house and takes care of the kids. He leads the family. She follows.

Sounds like a 1950’s television show, doesn’t it?

NO ONE lives like this anymore, right? You’d be surprised.

You know who seems to have a hard time with moving past these society-inflicted gender roles? Men.

Over and over, I find that men feel inadequate, feel “less of a man,” if they can’t afford to pay. Or, if they are a stay-at-home Dad. Or, maybe they DON’T feel inadequate, but others tease them about it. For not being “manly” enough. Men are having a hard time.

They are STRUGGLING.

Struggling with being who society has told them they should be, struggling with the assigned gender roles that they have been indoctrinated into from birth, struggling to live their special needs life fulfilling the role that their CHILD needs them to fill the most (whatever that is) while balancing all the rest.

Think about it.

What if your child’s needs indicate that the best situation for them is a stay-at-home Dad? What if Mom makes more money? What if Dad is better at juggling the responsibilities of the physical, therapy, educational, emotional needs of raising a child with special needs? How can we assimilate those needs into the stereotypical cultural expectations of men?

We can’t.

And so I encourage you, once again, to create your new normal. If you are living the special needs life you know exactly what I’m talking about. Let go of rules that you didn’t make that don’t serve you or your situation. The last vestiges of what it means to “be a man,” are waiting for your ceremonial bra-burning moment. Are you ready to light it on fire?

Burn, baby. Burn.

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 had a bad day today.

My son, Kai, had a seizure. Actually, it was a small series of them. This was our second time with this experience and this time was worse than last time.

Last time, he zoned out and stared at the ceiling and then eventually passed out. This time he vomited. I thought it was due to a bad combo of foods so didn’t worry about it and put him in the bath. When he stepped out of the tub, he zoned out and pitched head first toward the wall. I caught him before his head made contact and helped him up while his body started to vibrate. His eyes looked vacant and his pupils grew steadily larger. I helped him to the bedroom, where his dad and I laid him on the bed. He came around briefly and then started up again. We quickly got him dressed, into the truck and to the hospital.

Kai has eight diagnoses. One of them is PVL (periventricular leukomalacia), which is damaged white brain matter. It is rare and often misdiagnosed as autism (which is another of his diagnoses). PVL is linked to cerebral palsy, which Kai doesn’t have, and to seizures, which he didn’t have until a couple of months ago. The hospital initially thought his first seizure was due to a quickly spiking fever, but I think that they are wrong. We have an appointment in the next couple of weeks, on my birthday (the first available date), with the neurologist and I anticipate that we will discover through an EEG that this will be ongoing. I don’t know this for certain but its what my gut is telling me.

This sucks.

EIGHT diagnoses. And just when I feel like I have a handle on everything, there is ALWAYS a curve ball thrown at me. I often say that if God doesn’t give you more than you can handle, God must think awfully high of me.

I try to always remain positive when it comes to Kai and living the special needs life. And I will be OK. So will Kai. But, right this second, I am…

I have no words.

This gig, 24/7/365, is rough. If I told you it wasn’t, that you wouldn’t have moments like this, where you felt like the weight on your heart is unbearably heavy, I would be misleading you.

But, this is what you, and I, need to remember. This moment is not forever. This feeling is not forever. I feel it. I feel it hard. It hurts. It’s bad.

These little earthquakes can rock you to your foundation.

But, eventually, the shaking stops. The situation may force you to relearn your special needs life. To learn your new normal, YET AGAIN.

Remember when you did that before? You did it, didn’t you? So if you did it, you can do it again. And again. We sure as heck don’t want to, but ultimately, we need to keep our eyes on the prize.

My Kai is a sweet, sweet prize.

I had a bad day today. But this is still the greatest job in the world.

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!

Sometimes, especially in the summertime, when the kids are off from school, I feel like I just can’t get anything done. I know that parents of typical children often say this. They feel exhausted and constantly interrupted. I know we have this in common. But I think that our experiences are a bit different.

For example, I am a blog writer, but I am also trying to finish my first draft of a book (coming soon for special needs caregivers!). I know what I want to say but I get off track when my son Kai, who is seven years old and has eight different developmental/neurological diagnoses, interrupts me every 30 seconds. This is so he can pull my hands off of the keyboard and put them in the raised position he prefers. So that when he deems the time is right, he can push hard on one of my hands forcing me to clap. Repeatedly. For SuperWhy. And then, since it’s on his tablet, he moves the video back to where we just were and we do it again. And again.

Sometimes only twenty times. At other times, three to five hundred times.

By the end of this, my hands hurt. I know that my son is making contact with me and playing with me and enjoying this time spent together. And I WANT to have this connection with him. So most of the time, I do it with him. But my work gets pushed aside and when I come back to it, it doesn’t always have the same flow. Or the same content. Or heck, any content. What was I saying?

I try to write while my son rocks wildly in his dad’s rocker recliner, which he has broken and my husband has fixed at least ten times. Sometimes he rocks so hard, he almost goes airborne. At our last house there was a dent in the wall where Kai had repeatedly slammed the chair into it. He also wildly laughs and sings or babbles to himself. And I try to block it out and write.

I also try to write when Kai wants me to get up and take him to the bedroom, where he wants me to stay… to do nothing. He just likes that I’m there. So I will try to let him in and then return to the living room to write. But then he comes and gets me. And, of course, if I bring the laptop into the bedroom to write, he wants to leave with me to go to the kitchen. Or roll around on the bed where I’m working. Or climb on top of me and push the computer to the side.

Since school has let out, Kai has gotten more physically attached to me than even his usual, which is a lot. Sometimes I feel like I have a third leg. Or arm. Or torso. This often appears when I am trying to answer a message pertaining to the blog or the book.

You can count on Kai to be quiet for a couple of hours until I need to have a business conversation by phone. The SECOND this happens, he will cry and no one will be able to figure out why. We can ask but 99% of the time, he won’t answer.

The other day I was working and Kai pulled me out of my chair to go to the kitchen cabinet. For the hundredth time, I tried to explain to him that there was nothing in the cabinet for him. It’s the one where we keep spices, medicines and, oddly, zip lock bags and wax paper and foil and stuff like that. But he insisted that I once again open it and show him the contents. And he kept gesturing to the top shelf. Mommy finally figured out, after MONTHS of repeating this activity, that Kai was seeing a teeny, tiny picture of chocolate chip cookies on the box of waxed paper. He was trying to tell me that he wanted chocolate chip cookies. So I went to the other cabinet and got him some, which, I rightly predicted, he just crumbled up into sawdust on the table. Which is why we usually eat vanilla wafers. They are harder to crumble. I later returned to the cabinet and turned the box of waxed paper so that the teeny, tiny picture of chocolate chip cookies no longer shows. I am proud of myself that it occurred to me to do this.

I was literally just interrupted before I started this sentence, but by my nine year-old, typical daughter. She wanted to jump into my lap. So, of course, I put the laptop down and she did. What followed was a very detailed conversation about spaghetti. How we like it on a plate. In a bowl. WIth cheese and sauce. Twirled on a fork. In our tummies. But then, I said, hey, let me finish this article and she said, OK, Mommy! And then kissed me and jumped up. This is how I imagine the interruptions might be with an all-typical household.

I am trying to focus. But she just left and now Kai is clapping and tapping and stimming and making sounds.

And the adult kids just walked in. And the baby granddaughter (I married a man with three kids; we have a blended family).

When I find that the interruptions begin to outweigh what I am producing, it’s time to take a break.

But I try to remember the reason why I am able to have all of these interruptions. I have a wonderful, amazing son who happens to have special needs. And an incredible, loving family who are all typical.

I am blessed. And I need to remember that as a caregiver, THIS is my job. Everything else comes second.

I was going to say something else but was just informed that the spaghetti is ready. I have no idea what I was about to say. So, I guess it’s time to stop working and eat with my family.

Wait! I was going to say… yeah, never mind. It’s gone.

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!