Life Raising Children With Disabilities

By September 14, 2021 September 25th, 2021 Article

It’s true. It’s not all it’s cracked up to be. Some of you have only seen families with disabled children on social media. A lot of times you see this beautiful portrayal of a life that is a bit different, but everyone is still smiling, laughing and looking as though life is perfect. Now don’t get me wrong. I am not living in their shoes, so it could just be that. Pure bliss. But for me, the bliss is hit or miss.

Being Transparent

Whether you are my blood family or my internet family, you are just that…family. Everything that I share whether it is online, in a family group chat, or like this…on my blog, I will always be transparent. If you were to scroll through my social media you would find posts of me smiling, crying, laughing and joking around. The reason for that is because I only know how to be authentic. And to be quite frank with you, being authentic is one of the things that helps me get through the day, weeks, months and years.

When I make a post, the response I get is usually someone sharing words of encouragement, other times, it’s someone asking a question because they want to know more about our life (which I have no problem sharing), or it’s from another family who has a child who is disabled and they are in awe and admire how open I am.

Of course there are some ugly moments as well that happen from my transparency such as “internet trolls” who have nothing better to do than to be negative. But there is this wonderful feature in the social media world called “blocking” and you better believe, there are several that I have happily sent to the “Block Party”. I kind of treat it like when people stare at us when we are out and about. I will stare back and kindly keep on with my day. Same thing applies with the trolls, except instead of staring back, which is not really possible, I may or may not share some words, then I send them to the block party, and carry on about my day/life.

Being Transparent In Your Own Way

Now I don’t expect everyone to be as open as me, because if that was the case, we’d all be internet friends talking to each other all the time (or maybe not…if you’re antisocial like me, haha). The good thing is there is no right or wrong way to be transparent. You can do it individually or go as far as what I do and openly share to the worldwide web. The key to transparency is opening up some how, some way and getting your thoughts and feelings out to something or someone else. Here are a few ways you can be transparent:

  1. Journaling: This allows you to open up and put your true thoughts on paper. It stays between you and that journal. Of course, just keep it in a safe hidden place so no one finds it until you’re ready to talk about it.
  2. Talking to someone: That someone does not have to be a therapist starting out, because I get it. Just the word “therapist” can sound daunting (more on that later). I’m referring to someone you trust such as a friend or your partner.
  3. Respond to medical care surveys: At some point, you will more than likely receive a survey about the service you received from a medical professional. The good thing about that is you can respond anonymously. These surveys allow you to share your true thoughts and feelings about the care your child or you as the caregiver received. Be open. Be blunt. Be transparent.
  4. Talk to a therapist: In example #2, I mentioned “more on the therapist later”. Well this is later. Sometimes therapist get a bad rap, but in my opinion, I think it’s moreso they were not a good fit for your needs. Although they have a psychology background, that does not mean they will understand the role of a caregiver. If you go the route of wanting to be transparent with a therapist, make sure they are a good fit. There are thousands of therapists, so you do not have to be stuck with someone that makes you uncomfortable. A big part of transparency is trust, so it is imperative that you trust your therapist with your sacred thoughts and feelings. Trust me, it will save you a lot of pain and time.

Living My Life Like It’s Golden

Now you’re probably thinking, wait. This lady (i.e. me) just said her life is not always bliss, so how is she “Living Her Life Like It’s Golden”? Ha…you caught me! But not in a lie, that is actually a title to one of my favorite songs by Jill Scott. I purposely put it here because as a mom to a disabled child, my life is not easy at all, so I have to make sure I do things to pick me up. One of those is listening to music. It’s something about hearing a tune with a positive message or fast beat that lifts my spirits. It doesn’t change my situation, but it definitely changes my mood. This is one my many techniques that I’ve learned over the years to bring me out of a funk. I suggest you try it one day, because believe it or not, according to Johns Hopkins Medicine, “research has shown that listening to music can reduce anxiety, blood pressure, and pain as well as improve sleep quality, mood, mental alertness, and memory.” But hey, I’m just the messenger. Don’t knock it till you try it! 🙂

Should I Stay or Should I Go

This can apply to so many things, but as a mom to a disabled child, I’ve had to make so many life changing decisions. The most recent being leaving a very successful IT career. Now don’t get me wrong, the job was indeed stressful, so there were many factors that I had to consider including my health. If you’re anything like me, you may have uttered the phrase “What will happen to my kids if I’m not here”. Whether you have a child with a disability or not, that phrase is very common when you become a parent, but it is 10x greater when you’re in a predicament like myself. In my last few months at that job, I barely got any sleep and I had multiple panic attacks. It was a very scary time for me, especially being a single mother. I also knew my daughter would be starting weekly physical therapy sessions, so I had to really evaluate my situation. I ultimately made the decision to leave my job because I knew how important my health was as well as the importance of the intensive therapy for my daughter. Would I recommend jumping ship like I did, absolutely not. You’ve got to make sure your decision fits your circumstances. When I left I had a very large nest egg, so I was a bit more comfortable going from making 5 figures a month to 0 figures (insert cringe). My recommendation before you decide to leave is to:

  1. Talk to someone about your thoughts: I don’t mean your employer, but someone that you trust who knows your current home life situation. The last thing you want is for someone to respond solely with “do what you gotta do”. No. That’s not going to help you. You want someone that you can truly talk things out with.
  2. Write down the pros and cons: It’s always good to do this so you can visually see what is ahead of you.
  3. HAVE A PLAN: This is really the most important one of them all. It’s one thing to make a decision, but a decision that’s not backed by a plan is pretty much equivalent to you jumping into the deep end with no life jacket on. Even if you know how to swim, at some point you are going to get tired and run out of resources.
  4. Utilize FMLA: I did this the year before I left, so if you’re not comfortable existing the 9-5, but need an extended break, ask your HR Department about the Family Medical Leave Act. Now not to discourage you, every employer does not offer this because they have to be eligible through the Federal Government, however, it does not hurt to ask. If they have this as an option, you can use your PTO/Leave to continue getting a check, but once it’s exhausted, you may not get paid during this time (however, the only time I’ve seen a bend in the rules was during the 2020 pandemic state of emergency, and they allowed employees to continue getting a portion of their salary while on FMLA). The bonus to using FMLA is your job has to honor your position and they cannot terminate you because you took the time off. You can get up to 12-weeks of FMLA every 12-months.

It’s OK to say “I’m Not OK”

If someone asks you the question, “How Are You?” If you’re not ok, please say that! No one is going to criticize you for saying it. As a caregiver, we are oftentimes classified as “the strong one”, “supermom”, “superdad”, etc. But people including us, need to remember we all breathe the same air. There is no magic layer of oxygen in the atmosphere that is for parents raising children with disabilities. Everyone has their fair share of good and bad days. Sometimes you can easily see someone is having a bad day by their demeanor. They may distance themselves or just have an attitude for what appears to be no reason, when in reality there really is. Other times, the true feelings are masked with a smile. This goes back to the transparency. It is important that you are honest with yourself and those who are asking because whether they can relate or not, it is not healthy to keep your feelings to yourself.

Being An Effective Supporter To Someone Raising A Child With A Disability

If you are someone on the support side of things, here are a few tips for you if you’ve asked the question “How Are You?” and the response is “I am not ok”:

  1. Instead of “I’m sorry”, say “I know you have a lot on your plate. Let me buy you lunch today.”
  2. Instead of “What can I do to help”, say “I want to come by your house later so you can show me how to do XYZ to lighten your load.”
  3. Instead of “I’ll pray for you”, say “I’ll pray for you and also will contact my church community outreach ministry so someone can contact you to try to help in ways that I can’t.”
  4. Instead of “I wish I could do something”, say “I may not understand, but can you tell me your child’s diagnosis. I want to learn more about it so I can be better equipped to give you some relief.”

Those are just a few examples, but as you see, as a supporter you can help in more ways than you’ll ever know just by changing your choice of words and actions.

Remembering Your Life Is Not Over

In many ways, our lives are filled with ups and downs, good and bad days, and the feeling of being misunderstood. Although our situations can’t change with a snap of a finger, if you only focus on the negative, that is how you will walk around living your life. Try to find some positivity out of what may seem like the end of the road. Take a deep breath in, now breathe out. Be thankful for having breath in your body. Many did not wake up today. If you feel like you’re at your wits end, take my advice and open up either by journaling or talking to someone. You will need to get some relief somehow, someway, because holding things in and continuing to say your life is over and things aren’t going to get any better will only keep the gray cloud over you. Take it from me. I am someone that has accepted that my life is extremely challenging, but I am also taking the steps to try to better my mental health and physical wellbeing. If need help starting, grab my free guide with a few other ways that have helped me cope with being a mom to children with disabilities.