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A Parent's Perspective


As many of you have probably noticed over the years is that our disabled community has grown and continues to grow each day. In my opinion, I feel like the media does a good job of providing many different resources for communities all over the world with disabilities; but I feel that they leave out an important part of sharing the perspective of how children, teens, adults, and parents of children with disabilities see the world. So far on Alyssa-bilities, we have talked about how children, teens, and adults with disabilities see the world; but we haven't really discussed how the parents of children with disabilities see the world. 


In this blog, I am going to be discussing the parent's perspective, challenges of being a parent of a disabled child, and how fun it can be to take care of a disabled child.


A Parent's Perspective 



In my opinion, I think being a parent of a disabled child has to be one of the hardest, but most rewarding jobs in the world. Yes, it will be challenging sometimes; but in reality isn't everyone's life a little challenging at one point or another? From the beginning, when your child is first born you may feel emotions of happiness, excitement, and even terrified; but when the doctors come back and diagnose your child with having a disability other emotions may come up which can includes feelings of devastation, uncertainty, and maybe even the feeling of being lost. For the first day or two while still in the hospital you may get some help from the nurses and doctors with taking care of your baby while they monitor both of you to make sure no problems arise, but as soon as they release you from the hospital it's just you and your baby against the world without any instruction manual to help you along the way.

Sounds pretty scary, huh? 

For my parents, it was quiete the rollorcoaster ride before I was even born with all of my medical problems and having a stroke in utero. This already brought my parents and doctors great concern for my health and even with that I was 9 days past my original due date and took a while before I was ready to be born that my mom's doctor left to go file his taxes while another doctor filled his place for the time being. Sorry mom, for putting you through that torcher. After I finally arrived, the doctors did a physical on me and diagnosed me with having Cerebral Palsy ; a congenital disorder that effects movement, muscle tone, or posture. Just like any other parent, I am sure that this left my parents feeling uncertain and lost about what the next steps they should take in raising me with all my disabilities. It's not like I was born with an instruction manual titled  " How to Raise a Child with Cerebral Palsy," although that would be nice. As a baby, I slept most of the time, didn't cry unless I had something going on with me, and was very playful when my mom forced me to stay awake ,so I could eat and spend time with them. As I started getting a little older and my seizures really started was when some challenges appeared in my parents life.

Challenges of Being a Parent of a Child with Disabilities 

While doing research on the topic of points of views from people who have a disability or someone who is taking care of someone with I disability I found a common list of challenges that applied with both my family and may also reveal itself into your life as you either begin or continue your journey as a parent of a disabled child.  Some of these challenges may include but aren't limited to;

  • Feeling like your all alone 
  • Juggling  everyday life 
  • Making friends
  • Making time for yourself and your spouse

Feeling like your all alone 

For my parents, these were just a few of the challenges that popped up on almost a daily basis. Through the course of a couple of years when my seizures first started and escalated ,they searched everywhere for answers; online, through doctors offices, and even asked for help from family and friends; but none of them seemed to be able to give them any help or answers. For the longest time they felt feeling of uncertainty of how the future would turn out, lost about what steps to take next,and lonely because here they were trying to take care of a special needs child that had many different disabilities and on top of that,had super severe seizures that would be considered a medical emergency because some of the episodes would last longer than 5 minutes which is already super dangerous; but the scary part was when the episodes lasted an hour or more. I was really being looked after by God during these times because after each episode I continued to live life like nothing happened.

I can't come close to knowing how my parents truly felt or how they got through this challenging time on their own. Back when I was a little girl, my parents didn't really hear of children having disabilities ,non the less having a support group for parents of children with disabilities because it was still pretty new to the world, so everything they tried was based on different trials and errors. It wasn't until my family learned more about what I was going through and how we figured out how to live a somewhat normal life that we realised between talking to other parents of children with disabilities and hearing about people going on Oprah to describe very similar situations that other parents where having with their child that we realised that we were not alone.

Today, there have so many parents of child with disabilities that they have different Support groups to help parents by providing a like minded community and resources to help each other out in times of need.

Juggling Everyday Life 

During the times that I wasn't living in the hospital brought up a second challenge of juggling everyday life that my mom had to find a way to overcome. When your a parent of a disabled child life can feel kind of hectic sometimes with juggling school, IEP Meetings or 5o4 Meetings, chores, grocery shopping. 
The best ways my mom solved this challenge was to make a schedule that listed all of my doctor's appointments, IEP Meetings, and times she would go grocery shopping. The second way she found time to do things like chores was when I would sit down to watch my favorite cartoon which was Dora at the time. 

Making Friends 

One of the hardest parts of being a parent of a child with disabilities is trying to make and maintain friendships. At least when I was younger most people didn't really understand what disabilities were, so they didn't take the time to get to know me. This was challenging for both me and my parents because we didn't really connect with other people who were like minded.  On a few occasions, I would find other kids that took the time to know me and made really good friends with them. These times gave me a friend to play with and my parents would make friends with their parents.

Another way you can make friends as a parent with disabilities is to engage with the community and join some clubs or a support group that is geared towards parents of disabled children.


Making Time for Yourself and Your Spouse 

Raising a child with disabilities is really challenging when it comes to maintaining a relationship with both yourself and your spouse. Many people may think that because they have a disabled child that they need to spend all their time with their child, but what they dont realise is that the are neglecting time for themself and their spouse which can cause problems in that relationship. When I was little, yes I spent time with my parents, but I was also very much independent and would play by myself, go down in the middle of the night when I couldn't sleep and either stacked things up to try to open the door to go play outside or turned on the TV to watch infomercials.

I highly recommend that each day you set aside time for yourself and for your spouse whether you have your kid play on their own or have someone else watch them to ensure you maintain a healthy relationship with yourself and your spouse.




The Joy of Parenting a Child with Disabilities 

Parenting a child with disabilities is challenging, but at the same time it can be a fun experience. When I look at myself and other disabilities children, I see characteristics that other children don't normally have when they are growing up. Some of these characteristics include;
  • They teach you new ways to look at different situations and people
  • They are generally happy even when things are challenging
  • They see joy in the simple things
  • They look forward to experience rather than materil objects
  • They are more mature than other kids
  • They have their own ways of seeing the world 
  • They have their own way of playing and joking
  • They figure out how to do things in their own way
  • They have a playful personality almost all the time 
These are just a few of the characteristics that you can experience when parenting a child with disabilities.

Conclusion

Parenting achild with disabilities is a really challenging job. There will be times that are challenging and times that are a blessing. The thing I want you to remember is that you are not alone and that there are many resources that can help you along the way. Children with disabilities are unique in their own ways and it can be a wonderful journey to have the opportunity to raise a child with disabilities. 

2 comments:

  1. I could never put into words how much joy you have brought into our lives. I wouldn't change a single thing about you. You've taught me so much more than you could ever imagine. You are a blessing in every single way. ❤ I love you!

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  2. Thankyou so much. I love you too 🥰😘💚💜

    ReplyDelete