032 | The Problem With Having the Perfect Plan For Your Special Needs Child

01/07/20 • 56 min

Accepting The Unacceptable, Parenting Autism, Epilepsy, Special Needs

In this episode, I want to talk about the difference between preparing for something and planning for something. We all want the plan. When we walk out of the psychologist's office who just gave us the paper that says the word "autism" on it, we want the plan. We want the map that tells us where to go, what to do, what the right diet is or the right therapy, how we can get a hold of those resources, and ultimately what's next.

But as you know, they don't give you anything but a piece of paper that says the word "autism." This fact alone can make us go into panic mode. We search for answers and get so many conflicting thoughts about what we should do. Now, couple this with all the thoughts that are going on in our minds, and it's no wonder that we as parents get a little freaked out.

We go to the worst-case scenario all the time. What is my child going to be like when he/she gets older? Will I have to take care of them until I'm old? Will they ever learn how to speak? Will they ever be independent?

Those are some typical freak out thoughts that just swirl around in our heads, making us paralyzed. But here is what I want to challenge you today. I want to introduce you to a different thought.

What if we put too much emphasis on the "plan"?

What if we focus way too much on trying to map out the journey just so we can have the peace of mind that we're headed in the right direction? Because we can't find that direction, we think we're doomed, and so is our kid.

What if you thought more about preparing and less about the plan?

To plan means to design in detail, like a building or a machine, while preparing methods to make everything ready for a specific future purpose.

It is the same thing as having a child. You get pregnant and start planning. You go into this fantasy mindset and have a loose plan for this child's life. But we all know what happens when your child is born 2 months early and has to spend months in the NICU. Or you get an autism diagnosis, and your child has no words when they're 3 years old.

You realize that the plan you've created in your head isn't lining up to reality, and you freak out. It feels like you don't know what the future holds, and you have no control, and that must mean death.

I didn't plan to spend weeks in the hospital trying to figure out what was going to stop Remy's seizures. I didn't have a plan for how to teach Remy how to talk, to find a speech therapist and an ABA program, or train someone to watch my child so I could go on a date with my husband.

This topic of planning vs. preparing came up for me during the craziness of the holiday season. There was a lot for our family in December. I had every day planned out, but nothing went according to plan, and I ended up spending the whole month in scrambling mode. I was so stressed the entire month that by Christmas day, I was burnt out.

Looking back, I would have prepared for everything on my to-do list ahead of time so that when my plan didn't work out, I would be ready to face those challenges and adapt better.

Eventually, you will learn that raising a child with special needs means that everything is unknown. Sometimes it takes time to accept this. Often, we are not going to be able to follow our plans, so better use of our time is to just prepare.

Start a special needs trust, even if you have no money to put in it right now. If the worst happens, and in 30 years from now, your child isn't living on their own, at least you are prepared to financially support your child. Right now, you have no idea where that money will go, but in 30 years, when it's time to dip into that trust account, you'll have the money to decide how you'll use that.

We have no idea where we are going to be or where Remy will be in the years to come. But one thing we do know is that she has an amazing doctor, she's learning daily living skills, and we live in a state where special needs services are abundantly available. We are also close to family and have a great nanny. All the big things we need to make it through life are in place. It takes a lot of work, in the beginning, to make it like this, but what that means is the plan we have for her has plenty of room for change and course correction.

Making a plan isn't a bad thing. In fact, it is necessary. But when we put too much emphasis on a plan, we don't leave room for error when the plan doesn't go well.

Think of it this way. Planning is going forward. Preparing is starting backward.

Write down all the big picture things you want for yourself and your family, and specifically your child with special needs. Don't do this with fear, but see it as if you're creating the life you want your child to have.

So, write down all of your wants. Then work backward and fill in loosely what needs to be put in place to create that life. You don't have to know ...

Those are some typical freak out thoughts that just swirl around in our heads, making us paralyzed. But here is what I want to challenge you today. I want to introduce you to a different thought.

What if we put too much emphasis on the "plan"?

What if you thought more about preparing and less about the plan?

To plan means to design in detail, like a building or a machine, while preparing methods to make everything ready for a specific future purpose.

Looking back, I would have prepared for everything on my to-do list ahead of time so that when my plan didn't work out, I would be ready to face those challenges and adapt better.

Making a plan isn't a bad thing. In fact, it is necessary. But when we put too much emphasis on a plan, we don't leave room for error when the plan doesn't go well.

Think of it this way. Planning is going forward. Preparing is starting backward.

So, write down all of your wants. Then work backward and fill in loosely what needs to be put in place to create that life. You don't have to know ...

Previous Episode

031 | I Lost 55 Pounds and This Is How I Did It - The Importance of Self Care As A Special Needs Parent

I am really excited to be talking about today's topic, which is mostly about my weight loss journey. I wanted to do this episode because it's New Year, and so many of us want this year to be the one that we change and experience amazing things. One of those things is self-care! A lot of times, we give so much to our families, friends, our job, and school, but you cannot pour from an empty cup. Sometimes you may go without sleeping or eating, and all of the comforts you are used to just so you can take care of everybody else. Often, when you are in survival mode, self-care is not on any list that you have. In this episode, I am going to be talking about my belief about self-care and how it has helped me in my weight loss journey.

When Remy was diagnosed with autism and epilepsy, I thought a lot about the future. What would it look like for Remy? Would she be able to be independent, or would she even make it to adulthood? One of the biggest concerns of mine is that I am going to die before she does. Any parents want to die before their kid, but when you have a child with autism or special needs, you don't want that to happen because you don't know what will happen to them without you there. When you have someone, who could potentially be taken care of their whole life, the typical 18-year mark to adulthood extends to the length of time your child will be alive. So with that fear, we have to think of financial support, who will take care of them, if they will be put in a home, and we worry that no one will take care of them or love them like we would.

We need to focus on how to take care of ourselves so we can be there for our kids as long as possible. The importance of self-care is one of those things we know is true but is so hard to practice. How do we take care of ourselves and love ourselves when we have so much on our plates?

Over the years, since I've had children, I've been able to lose weight after each pregnancy. But it was especially hard once I had Remy to re-lose the weight again. When I had decided to start dieting again, Remy began having seizures, and I didn't feel like I could keep it up. I'd been on many diets before but fast forward five years, I hadn't lost weight, I was the heaviest I've ever been and completely miserable.

I realized that I was using food to numb myself. It is really stressful to be a mom of four, and to watch your daughter have seizures all the time. But I realized that if I kept going and didn't keep myself in check, I wouldn't be around to help Remy as she got older. How I was feeling and the state of health that I was in, there is no way I would be able to take care of her if I didn't do something about it.

For the first time in my life, I decided to practice self-love and to tell myself that it was okay even if I had let myself go and gain a bunch of weight. By loving and forgiving myself, it made me appreciative of the body that I have. I've never appreciated my body in my life. I began to appreciate it because I had acted unconsciously for the last seven years and my body still functioned. I was thankful that my body let me do damage to it and that it was still working. All of us special needs moms devote ourselves entirely to taking care of everyone else. We don't take care of the most important thing that gives us the ability to take care of others, which is our bodies, minds, and our happiness.

I had a couple of breakthroughs with this journey. I listened to two different amazing podcasts, which helped me to realize that I can accomplish my weight-loss goals.

I was successful enough to lose 20 pounds, but over the summer, I still struggled to lose anymore.

It was over six months that I lost 20 pounds, but I wasn't very successful in the summer in my effort to increase my weight loss. It caused me to realize that the problem lay in what I was thinking. I would feel envious of different women that I saw on TV that seemed like they had everything they needed, and that was why they were successful at their weight goals. But I began to listen to the thoughts that I was thinking, and I realized that I have access to the same resources that other women do. The only difference is my mindset. My thoughts when I compared myself to other women had become a belief, and when it becomes a belief, it becomes the truth.

The biggest thing that I have learned is that you cannot lose weight by being unconscious. You have to pay attention to what you are eating and why. Once I knew that all of the things I had previously been thinking were lies, that's when things started to take off. When you question yourself enough, the autopilot of your mind gets rid of old food habits. I am so excited to say that I was able to lose 55 pounds!!

I'm so happy because the food doesn't control me anymore. I lost fifty-five pounds, and I am still going. I work out three to five times a week, I am stronger, and I fee...