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

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 precisely how you'll accomplish it. You'll learn that as you go. Just write down all your desires.

What is it that you want for them?

If you're trying to write goals and create your New Year's resolutions, I will start by figuring out the kind of life you want to live. How do you want to feel, and what are the important life-giving scenarios you want? Then work backwards. When you do this, the plan is super easy to figure out, and you're able to change the plan at any given moment.

1. Raising a child with special needs means that every step you take is unknown. This is important to understand so that you can prepare for when things don't happen exactly how you expected.
2. Prepare by starting from your goals and desires and working backward. Don't emphasize an exact plan if you aren't sure where you are going. Start at the beginning and figure out what you want so you will know what to prepare for.
3. Start a special needs trust for your child, even if you are not ready. This is something that will be very helpful and important for your child in the future. You can always add to it when you have the money. At least it will be there when you need it.
4. Only worry about planning when it is necessary. It's so much more productive to prepare the life you want for your family and your children, and only plan when you have to. You will not be as stressed out, and you will adapt so much better when life doesn't go according to what you thought.
5. When you emphasize a plan too much, you don't leave yourself with any options when that plan doesn't go well. There is a high likelihood that what you plan for won't happen, so if you focus on this too much, you will feel stressed and helpless because you haven't allowed yourself to prepare for anything else.

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