Parenting is hard. We all know it. Some days things go to plan, other days the plan goes out the window. Now, add to the mix a child with a disability. The stormy waters are hard to navigate. That’s probably why you may be looking for some answers in this blog. I am here to let you know, I understand. I’m here to support you through challenges you may face and to let you in on a few tips and tricks that may make you feel a little more in control.
The challenges you may face
Raising a child with a disability brings with it many beautiful challenges. Each challenge you may face comes with the opportunity for deep personal growth. You may experience a few of the following challenges when navigating raising a disabled child; a lack of patience, communication barriers between you and your child, financial burdens, fatigue, fear of how the future may look for your child, grief from letting go of how you thought parenting may look, and even guilt from focusing more time and attention on one child over another.
These challenges can be felt all at once, one at a time, over a few years, they may come and go, but it is important to know the positives out way the challenges. Whether you have children with no medical conditions, mild or severe medical conditions you will always have challenges that you will come across. As a parent I understand the struggles that come with having a child with medical conditions. My daughter Isabella was born with spina bifida and since her birth we have had many hospital visits. Having family and friends supporting us through it all has been wonderful.
First and foremost, your child will benefit from a mother and father who are well rested and taken care of. It is important to ensure you dedicate purposeful time to yourself regularly. This will improve your patience and focus. As a mother in your situation, I know this is not always possible. So it is important to be patient with yourself and understand that some days will simply be better than others. It is vital to let go of the expectation of perfection.
Strong Support System
Secondly, finding a strong support system will ultimately prove to be your saving grace. There is nothing more important than having people around you that understand what you are going through. They can offer advice and physical and/or emotional support when needed. This support system can also be a font of knowledge for techniques that will improve your day to day routine as a parent, and the overall quality of life for you and your child.
There are endless amounts of resources out there that will help to assist you in your parenting journey. Here are a few great books which may help you in navigating the early stages of parenting a child with a disability, including some financial guides. Some things you read may work, others may not. It’s important to know that the way you function as a parent and a family unit will differ from every other family. So do not feel you need to put into practice every single thing you read.
Taking the time to learn how your son or daughter communicates, learning to understand their triggers, and gathering as much information around you as possible to truly understand your child’s disability and their means of communication will prove to be a breakthrough point for any parent.
Keeping lines of communication open between you, your spouse and your child are vital. This will aid in the transition from understanding their condition as a child/teenager, into adult life. Try not to shy away from their questions. If your child feels they can ask you anything and share their internal challenges as they grow older and more aware - that’s a huge parenting success.
Remember we are only human
On that note, remember we are not perfect. We are human. There will be days of darkness among the joys. Some days you may feel totally out of your depth, tired, inpatient and frustrated. That is normal. We are all here for you when those days come. In times of frustration, it helps to focus on those small wins each day. A smile you may not usually get from your child, a thank you or a look of appreciation, an act of obedience or a hearty laugh. These are all parenting wins. Hold on to those tightly. Hold closely your support group and remember it helps to relate to others who are struggling as well. Implementing some of the above tips will help you positively navigate these challenges. As a mother who faces these issues I am here to listen to you and hear about the journey you are on. Leave a comment below or send me an email so we can connect.