Worry weighs a lot
There is no reason to carry around a 15 pound bag of potatoes everywhere you go. Unless you are headed home from the grocery store or are on your way to a cookout, you don’t need the bag of potatoes until its time to use them. And if you don’t plan to cook potatoes, why in the world would you carry the bag around at all? 
And yet, we parents of special needs children, we parents of children that we know will never be able to fully support themselves or fully care for themselves, we choose to carry around a bag of potatoes simply because we don’t know how to put it down.
So what is the bag of potatoes we are carrying? It’s the worry about our child’s future. It’s the worry about who will care for them, who will watch over them, who will pay for them – and who will love them the way we do when we are gone. That’s our own special bag of potatoes. And the burden of carrying it saps energy and strength that could be much better spent elsewhere.
It takes effort but its worth it
There are things you can do to prepare your child for life when you are no longer around. But first you have to know what they are, then you have to have some idea of how to do them, and then you have to prioritize it enough so that taking those actions you need to prepare your plan can bust through the already overloaded days that special needs parents have – hands on care, driving to school, to therapy, calling insurance companies, supervising, cleaning up after, trying to make a buck, and oh yes, washing your own hair every now and then and trying to get a little sleep at least every few days.
Your time is already completely taken up with getting through each day. But that is precisely why it is so important to hit overdrive for a little while and take care of your planning for the future. When you do that, you will actually free up the mental energy you have assigned to worrying about the future. When you worry less, your body has less stress, and you actually feel better. All the things that accompany stress and worry, like tense muscles, stomach and intestinal problems, low energy, more illnesses, will be relieved a bit. Thinking about the future is not your only source of worry, but having seen the physical relief play out on our clients the moment they sign all their planning documents, it is probably more of a worry than you have acknowledged to yourself.
Interdisciplinary problems need interdisciplinary approaches
I have to confess here, that as a mom of two special needs children of my own, these are the same planning things that I had to make myself do. My kids were teenagers before I shifted my law practice into this area, so I actually was exactly like all of you when my kids were young. I didn’t know very much about what I needed to do, but I did know I needed to do something. I wasn’t exactly sure how to best find out what that something was. Estate planning had to be involved, right? So I chose a law firm and made an appointment and had a consultation and filled out some paperwork and signed some documents. But at the end of it I knew barely more than I had known going into it because the lawyers didn’t really talk to me. I explained my situation and they asked a few questions and that was about it. They did the legal actions they knew to do and that’s all that was dealt with. It had nothing to do with planning for my child, it had only to do with writing a will and a trust.
Context Matters
Think of it this way: if you or your loved has a cough, you go to the doctor, you get a diagnosis and you get a treatment of some kind. Simple response to simple problem. But imagine you or loved one – and some of you have been in this very situation – has several symptoms. Say, a cough, a limp, and an intestinal pain. But the doctor you go to only deals with coughs and doesn’t even have an interest in the limp or the pain. So you go to a doctor that treats limps, but she doesn’t want to know what the cough doctor said, it doesn’t have anything to do with her. And then you go to a doctor for the intestinal pain who says nothing is showing up on the tests, you must be ok, and you ask if the cough and limp could be related and the doctor says go ask the cough and limp doctor. You can’t get anyone to look at the entire problem, they are only willing to look at one individual body part for a problem that may or may not be related to the other problems but you can’t even find out because none of the doctors will consider the possibility.
This is what it is like to try and plan for a special needs child when you don’t have the right information because the situation hasn’t been looked at as a whole, interconnected puzzle. In isolation, you may have a series of good steps, but they may or may not all work together because no one has actually stood back and looked at the whole picture before starting to guide you through making a plan.
We see living people
This is why I built a law firm whose mission is to help special needs families. I didn’t create an estate planning firm, although we do that. I didn’t create a trusts firm, although we do that, too. Our firm does a lot of individual things, but they are all in service to what we really do: Planning for special needs families. Or, as I like to say, our firm specializes in putting down potato sacks.
You may not know how you can possibly prepare for your child’s needs long into the future, but we do. Let us help. Download the Special Needs Planning Blueprint on this page, attend one of our online workshops or Q&A sessions on the Four Keys to Special Needs Planning, or go ahead and schedule a personal consultation. Whatever it takes, we will show you how to get there.
Parker Counsel Legal Services can help you understand how to use special needs trusts and ABLE accounts together in a well designed plan to provide for the future needs of your child with a special need. We serve families in Texas, Massachusetts, New Jersey, and New Hampshire. Contact us for a consultation at 833-RED-BOOT (833-733-2668) or legal@parkercounsel.com or schedule a short informational phone call at Calendly.