Independence is a topic that often comes up by anyone affected by Spina Bifida (SB). Whether you are an individual living with SB or a family member of such a person. Often I read, on social media ( like facebook), posts asking about how to gain independence. These posts are usually from frustrated individuals with Spina Bifida looking for help in fulfilling their dream of independence.
Parents probably ask themselves if their child will ever be independent. Some people with Spina Bifida or their family with it, may have already ruled out or are determined that the individual with Spina Bifida will or will not experience independent living.
There are a several approaches to this topic and I will break it down into two sections. I will address the individual. I hope that parents and or others that have a person with Spina Bifida in their life will learn from this article by using it as a foundation for the future of the individual they know. There are many other variables and circumstances for this topic, but that can be addressed at another time or by another author.
In regards to the "frustrated" individuals, I will approach this from your point of view. I am going to make the assumption that you have finally reached a point in your life where you can start to think about becoming independent. You may feel that you have been under somebody’s watch your whole life and are growing tired of it. Maybe your friends and siblings are leaving home and their lives seem to be following a natural progression. You take inventory of your life and feel that independence is a missing link that will bring a feeling of satisfaction and maybe a sense of normalcy.
Independence can be difficult, challenging, rewarding and frustrating. Truly being independent will never be 100 percent easy. Let’s start by asking some tough questions about things you may have not considered. You may want to discuss these with family or friends to help you honestly answer. I cannot stress enough, the importance of honesty when discussing or thinking of these questions.
My advice is to write down your answers and discuss them with someone who knows you well and will give you honest feedback. If you do not like the results of your answers or their feedback, then be ready to come up with a plan to correct the problem.
How independent am I now?
Do I really know what I’m getting myself into?
How independent am I now?
Start from the beginning of your day and analyze everything you did without anybody telling you to do it or having them do it for you.
Do you wake up on your own, alarm clock, family member?
Do you dress yourself?
Do you do your own personal care (brush teeth, wash face, do your hair)?
Do you make your own breakfast?
Do you take care of your daily doses of medication?
Do you make your bed?
Do you do your own laundry?
Do you help with household chores?
Do you take care of your pets?
Do you require help to use the bathroom and bathe?
Do you require assistance when there are accidents (bathroom related)?
Do you help with planning, preparation and cleanup of daily meals?
Do you have a job or place you are expected to be on a daily basis?
Do you have reliable transportation?
How would you get to a place that is more than 2 miles from your home and back again?
Do you make your own doctor appointments?
Do you handle your prescription needs?
Basically, do you have an independent routine already or has someone else made it for you?
This is just a list off the top of my head. Feel free to add to this list of all the things you do that I missed or may have not thought of. How did you do? If you find yourself answering "yes" to most of these questions you’re probably on the road to making a plan to transition to becoming fully independent.
If you are unable to answer "yes" then we need to make a plan. Use a smartphone, calendar, a note pad, journal, ANYTHING to get going on making an independence improvement list. Add a couple of items at a time and set a permanent goal that will become part of your independence routine. For example:
Week #1 – I will wake myself, using my alarm, at 8:00 am and I will make my bed, and do my personal care without anyone telling me to. (I’m personally ok with sleeping in on a Saturday, so reward yourself!!!) (Personal care daily, not optional!!!)
Week #2 - I will remember to take my own meds daily and find a chore to do around the house that I will have to do when I live independently. You get the point, once you start, it becomes routine. Forever!!!
If you fail, identify the failure, forgive yourself and keep trying!!!
You may want to ask family members to help you come up with plans and strategies to make this happen. You may want to tell them you need their encouragement. It may take a long time for them to see you are serious and accept the fact that you are taking responsibility for things one step at a time.
They might doubt your ability, you may doubt your ability, but persistence is your key to unlocking your independence. Reaching a goal of independence is like SB, it’s not going to be the same for everyone and each individual will have to modify their strategies according to their own physical ability.
Do I really know what I am getting myself into?
This can be another reality check. I like to use my imagination and try to visualize the fantasy and reality of a situation. Living on your own is awesome! Nobody tells you what to do or when to do it. You get to be in complete control of your life. Privacy, peace and quiet, and think of the parties you could throw when you are on your own! That’s the fantasy most people have and it can be like that. Let’s take a look at the reality.
I usually use this illustration when I speak to the high school students I teach. Often, I hear them talking about how they cannot wait to move out of their homes and become independent. I usually then introduce them to the concept of independence by asking them to imagine they have moved in to their first place.
What about furniture? Most of them say they will bring their bed and maybe their desk from home. They are often unaware of how much it costs to furnish a one bedroom or even a studio size flat. We quickly start imagining that we need a couch, a couple of tables, a television, maybe a small dining set.
I then ask them, where do the "basics" come from? I then have to explain basic needs, such as linens (sheets & towels). I then switch to the kitchen and remind them they have to eat, and eating carry out all of the time, is not healthy and can be very expensive. Plates, eating utensils, pots, pans, kitchen utensils. The food doesn’t magically appear, someone has to shop for it.
I also give the example about how well my parent’s house was stocked on things that I would not even realize I needed until I really needed it. I’m talking about the essentials in the cupboard that you don’t necessarily consider food, but you need it if you are going to cook for yourself. Spices, flour, sugar, oil, salt and pepper, etc., all the things I took for granted and had to buy when I first got my own place! I never really appreciated how good the food was at my parent’s house until I had to fend for myself. Eating one of their home cooked meals is now a rare treat, because I moved 640 miles away!
When does a person decide that it’s time to own a toaster or microwave? Most apartments will have a refrigerator, and stove and maybe an automatic dishwasher (if you’re lucky). If you’re planning on entertaining or you’re a coffee drinker, you’ll be shelling out some money for that appliance. Here’s some free advice, the single hot beverage makers are not as economical as an old fashioned coffee maker that makes a pot at a time.
Something else to consider will be upkeep on your new place. Cleaning products are an added expense and you will need those especially for the kitchen and bathroom. Plan on acquiring a vacuum cleaner and be ready to dust and vacuum often. You can bypass this if you hire a maid service, but again that is expensive. It’s going to be a little hard to entertain or embarrassing if your place is a mess!
Then there are some other "essentials" that you may not want to go without. I know some people say they can cut it from their lives, but can you get by without things like cable television, internet, and mobile phone? Even if you opt out on cable services, such as Netflix, Hulu, Amazon, and Apple TV, all will bring additional costs.
A good exercise to try, is to itemize the monthly expenses compared to how much you are going to have to work with.
Will your place to live include heat and electricity? If you rent, will the landlord require a security deposit (usually equal to one month’s rent), first and last month’s rent? What happens if you sign a lease and need to break the agreement?
All of this is just some of the reality of being independent. It took me a few tries to get it right and I still struggle to sometimes make it work. I couldn’t believe it when sometimes, I would say to myself "I really miss living at my parent’s house".
Living independently is never going to be perfect. If you really work for it and go into it ready to face this challenge, you will succeed. To be honest, I didn’t get it right until I got married. Now, I share everything with my wife and 16 year old daughter. Yeah, I traded the single life of independence almost 19 years ago and I am happy with that decision. Marriage? Having children? Oh yeah, that could be a whole topic.
Daniel Wallace is a 46 year old individual living with Spina Bifida. He has a lovely wife, Kerry, who also lives with Spina Bifida. They have a healthy 16 year old daughter named Catherine. Daniel is a Social Studies Teacher on Long Island, New York and holds a Master’s Degree in Special Education.
Permission given for use to the WalkN Rolling With Spina Bifida Website.May not be published elsewhere in any form without written permission by Daniel E. Wallace. Expiration for this permission is 6 months from the original publish date.