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 ...

This is a very different episode then the ones I’ve done in the past. I have had a lot on my mind and I wanted to share that with you. I believe that it really ties in to special needs parenting and has given me clarity about why I am even here, doing this podcast, and why I have such a passion to talk to parents with kids that have special needs. I share stories about my childhood, my relationship with my mom, grieving her death, and how I have become a stronger advocate for special needs families and a more understanding and accepting parent because of her.

Here's how to connect with me

Email:

[email protected]

FB Group:

https://www.facebook.com/groups/608571542825070/

FB Page:

https://www.facebook.com/acceptingtheunacceptable/

Instagram:

https://www.instagram.com/jodywarshawsky/

Website:

https://www.jodywarshawsky.com

Free "11 Areas to Focus On" Guide

asdparenting.com/autism

This episode is about denial and it is one of THE most important episodes of this entire podcast. What I know now is that when you are raising a child with special needs, there is a part of you that has to die. And I know that sounds a little crazy, but raising a child with special needs requires you to change. It requires you to become a better version of yourself. Through change comes grieving and processing through the feelings that you are having. I am replaying these episodes because they still ring true. This episode is all about denial and grieving the child you thought you were going to have. If you are someone who is processing through some sort of diagnosis, listen to this episode and to the next four upcoming episodes and let me know what you think!

Here's how to connect with me

Email:

[email protected]

FB Group:

https://www.facebook.com/groups/608571542825070/

FB Page:

https://www.facebook.com/acceptingtheunacceptable/

Instagram:

https://www.instagram.com/jodywarshawsky/

Website:

https://www.jodywarshawsky.com

Free "11 Areas to Focus On" Guide

asdparenting.com/autism

Every single one of us holds beliefs that we believe are true. Do you know that our beliefs shape both our happiness and our misery? What we believe can help us to raise our child with autism and special needs to be strong and independent and happy, or it can help them to grow up feeling like a victim and that there is something wrong with them.

In this episode, we are talking about the topic of beliefs. We don't often realize that the beliefs that we hold so closely shape everything in our lives. Our reality that we view the world is framed by the set of beliefs that we have. It can be challenging to look at them in our own lives because it has been ingrained into us since we were little children. We've been trained and conditioned by the people in our lives. Because we've thought that way for so long, it's easy to believe it still.

The parents and adults in young children's lives fear the topic of special needs, and they teach their children not to stare or talk about them. They are taught not to look at someone different, and as a result, it puts into their minds that people with special needs should be feared. It is easy as an adult to still feel like it is the truth when you grow up with this belief that is there from such a young age. It is especially easy to take something as fact when there is a large group of people that feel the same way about something. Many people that hold a negative view about special needs often don't have anyone in their life that has any disability. I discovered that most of the beliefs I had were based on other peoples' uninformed opinions.

Growing up, I was influenced by the people around me and their view about children with special needs, and this shaped my negative thinking when I received Remy's diagnosis. I used to believe that Remy's autism and epilepsy was a curse placed on her life. She was a beautiful and perfect little girl in every way, and her life was cursed because she had crippling seizures and was unable to communicate or interact with people like other children could. I had to start asking myself what the positives were about Remy's situation. What could be the reason that she has autism and epilepsy? I learned that when you question your beliefs and ask yourself why you believe something, you'll be able to see that a lot of those beliefs are not true and that your fear is just that. It's fear.

When you have low expectations, then the very things you are afraid of are going to be true. Your child can feel your energy, even if you are not verbally communicating it. If you think that your child is a victim, then that is what they will grow up feeling like, and it can create anxiety for your child and a sense of dependency. They will not think that they are capable of being independent or confident in themselves unless you believe that they are.

Everyone has strengths and weaknesses. Our weaknesses or things that we think are weaknesses are there to help teach us and to help us grow and evolve. Our strengths are the special things that we can give to the world. Remy is here to change the world. Because of my actions and everything I believe aligns with that belief, it will inevitably happen. This enables me not to feel any fear about her future. When people have a change of heart, they will start to have a different perspective about people with autism and epilepsy, and that will influence other people in their lives and challenge their ignorant beliefs and so on. That is how your child can change the world!

It is a process to accept your child's diagnosis. The only way that your beliefs can truly change is if you acknowledge that they exist. Then you can start to think differently and believe differently, and that is when you will see that your life changes, your parenting style changes, your child changes, and ultimately, complete change happens.

Interesting Points:

(6:30) Beliefs are things we can change; they aren't facts. They are just a set of guidelines that we use to go about our lives. When I started to question the beliefs that I had, I was able to start seeing the beauty of autism and epilepsy. There is beauty in it because epilepsy, autism, and other special needs are there as a tool to teach us and awaken us and to show appreciation for the contrast in life.

(17:50) If we have a victim mentality, then every single action that we take is rooted in that belief, and we are leaving a devastating fate to our kids. The worst thing you can do is make a conclusion about your child before they are grown because you are setting whatever negative belief that you have about their future. I had to begin to look at what I believed and realize that what I thought about special needs was a small way of thinking. Asking questions about my own beliefs was the seed of what the power of Remy's purpose was.

(21:41) A cultural belief doesn't mean that what they believe is true. M...

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...