Having your child go from fully dependent to independent is a massive step for any parent but especially for those parents with a child with a disability!
Independence in regard to disability is defined as having control and choice over one’s decisions, their life, and their environment. Independence for people with a disability should be based on the following 3 things:
- Autonomy of the individual – this means that the person is to have the freedom to make their own choices and decisions without external pressure or influence.
- Opportunities to be actively involved in the decision-making process – For some parents, this may be hard because what they want for their child may be different to what their child wants. The person with a disability needs to be consulted along the way and actively involved as well as supported to be part of the decision-making process.
- Opportunities to be included – this means that the person with a disability is given opportunities to participate and be involved in the environment and community around them. This also can include opportunities such as financial, social, cultural, religious etc.
The main goal of independence is for people with a disability to have access to the same opportunities in their social, economic, physical or cultural environment as those without a disability. People with a disability must also be supported through gaining independence by allowing them to make choices and decisions about managing their own lives.
Caring for a person with a disability can be a very physically and emotionally consuming role. And trust me, it can take its toll on you. I know from experience that you can be so busy taking care of someone else and totally forget about yourself and your needs! I can remember when my son was first diagnosed with Cerebral Palsy, Optic Nerve Hypoplasia, Developmental Delay and Autism, there were bad times that I couldn’t even remember the last time I ate because I was so worried about what was happening with my son!
Have You Thought About Increasing The Independence Of The Person Or Child You Are Caring For?
As a carer and parent, I can tell you it is not easy to accept the idea that they can do things for themselves. And this is not because I want to do everything for him, it’s more like it is my job to protect my son.
But I do realize now, that after working in the aged care and disability industry, the more that I can teach him and allow him to do for himself the better off he will be in the future.
Sadly, I won’t be around forever and I won’t always be there to help but I can help him learn things now that will make my son more independent in the future.
Changes can be difficult and very scary for anyone to deal with, but it is definitely worthwhile trying! You know what they say “Change is as good as a holiday”!
Do You Have A Child With A Disability? Do You Ever Think About What The Future Holds?
I worry about the future all the time. I think about my son not having a good job, that he won’t be able to live on his own, that he won’t have a family of his own. And I also worry about who is going to look after him when I am not around.
This is why I am working on promoting and helping my son to be as independent as possible and to do the best I could to make sure that he has the most fulfilling life that he could ever want.
Ways to Promote Independence
Show More Support Rather Than Control
As a carer and parent, sometimes it is hard to take the back seat and watch your child try things on their own. You just want to be there to protect and nurture them and sometimes this means you are controlling the situation. This is not a bad thing, you are just doing your job as a parent or carer as you love the person that you are caring for.
The thing that you need to think about is that the more that you are managing the situation the more you are doing and this means the less that the person you are caring for will do. This overall makes the person or child you are caring for far more reliant on you to do things.
The tip here is to gradually find ways that you could support rather than control every situation. For example: “What would you like to drink?” as opposed to “You are having a chocolate milkshake”. Just little things like this are giving your child or the person you are caring for more choices and opportunities to grow in decision-making as well as promoting independence!
Trust Others To Care
As a parent and carer of my son, the hardest part is taking a step back and allowing others to support and assist him. This goes for a teacher, an aide, respite service or even my mother and father! I have always thought that my son is my responsibility and that I shouldn’t expect other to take this on. Now I know that this isn’t right to think this way but you know what it happens. I do realize that all these people involved are working with me and my son to teach him and help develop skills and independence.
Coleby attends a respite service every Tuesday and he loves it! It is great for his social skills and even though at times I feel so guilty and don’t know what to do with my self I know that it is something that he wants to do and that it is teaching him to be able to make friends and be social. And also not rely wholly on me!
Overall, you may have feelings of guilt as I do, but don’t allow your self to give into these feelings as you are not giving up on the person you are caring for you are giving them a larger network of people to help them and opportunities to grow!
Change One Little Thing At A Time
Taking small steps when promoting a person or child’s independence is the only way to go. It is all about progress, working together to build skills and knowledge needed to be able to perform tasks independently.
For example, I used to use the Taxi Scheme through the school. This means that a Taxi would come and pick my son up and take him to school and then bring him home from school each day. I chose to promote his independence by getting him to walk into school with other children and with the help of his younger brother.
This is a huge step to take but we did it in little steps. First I would park close to the school and watch him walk all the way to his classroom. Now I could park further away and he could walk up the street and into the school. We did this with school pick up as well. First, he would meet me at the library then we moved further and further away each time.
This little change has worked out to be a big change as he is now independently getting himself to and from school. I only have to meet them to go to the car.
It is also good just to work on one thing at a time as well so that you both know what you are doing and this could establish a learning path.
It is beneficial for both yourself and the person or child you are caring for to be as independent as possible to ensure that they can live quality lives. To do this you must try your best to:
- Allow your loved one to actively make decisions and be involved in the decision-making process.
- Allow your loved one and yourself to trust others and build relationships within the community.
- Always be supportive and praise even the smallest achievements.
- Set goals and work towards these together – don’t make these too hard to achieve!
- Encourage learning at every opportunity!
- Focus your attention on changing little things at a time! Little things fit an overall big puzzle!
I will leave you with this last thought:
Embrace the unknown and commit to supporting and accompanying your loved one on this journey of the unknown! The end result will be a positive life changing and beneficial event for both of you!
How do you handle your loved one being more independent? What are you and your loved ones’ goals?
I would love to hear your thoughts on Independence and ways that you help promote the independence of your loved one! Please comment below 🙂