Online Learning

So I want to tackle a sticky subject…online learning. Everyone has their opinion on the subject; each with their own perspective.

I have two children – a 13 year old daughter and a 6 year old son. Now the 8th grader is pretty self sufficient. Yes, I do have to practically drag her out of her bed every morning and make her go to sleep at a decent hour, she has taken online classes before. Not to mention the fact that I can log into her school account to see her grades and a list of the assignments she is required to submit.

However, the biggest hurdle is getting my 1st grader to stay focused long enough to watch a video, follow a zoom meeting, or complete his work without force. You see I returned to the workforce back in March, so it’s up to my son’s nurse and my mom (who is newly retired) to make sure the work is done. He is in a special education class, so there’s a lot of hands-on legwork that goes into teaching these kiddos.

My husband and I have made the decision not to allow our children to return to face-to-face classes for now and we feel it is best for our family. My mom had a stroke about 6 months ago and my son is high risk. I can’t say what another family needs but this is what works best for my family.

Until next time, thanks for your time.

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Returning to blogging

So it has literally been months since I last blogged, even though I’ve had plenty to talk about. I guess it’s taken so long to return because of all the things that have been going on in the world.

For starters there is the Coronavirus pandemic which is extremely challenging for both caregivers and the people they care for. My son is high risk, and something as common as a cold can put him in the hospital and/or take weeks for him to get over. Therefore, its important that my household stays safe and healthy.

Now the new school year has started and students are working from home, and learning online is a bit complicated for children in a special education class. There is a lot of hands on material, so myself along with the private duty nurse and my mom have been working with my son’s teacher to get him adjusted to class at home.

Lastly, I started a new job back in March, so between that, taking care of home and my kiddos, and making a little time for myself and my husband, I haven’t made time for blogging.

Yet I feel like doing so helps me process my feelings and connect with others who can relate to my fears and struggles. I am glad to be back at it and look forward to positive feedback.

Thanks for reading…

Sleep apnea

About 3 years ago my son underwent a sleep study and was diagnosed with severe sleep apnea. A few months after that he had surgery to have his tonsils and adenoids removed. Unfortunately, the sleeping issues still persist.

For those who don’t what this condition actually means, I will explain. The symptoms include excessive daytime sleepiness, insomnia, nightmares, sleep deprivation, fatigue, headache, irritability and mood swings; in addition to episodes of not breathing, loud breathing and/and snoring.

My little one experiences all of the above. I myself don’t sleep more than a few hours a night because I am constantly getting up to check on his breathing or because he is awake all hours of the night. He is unable to walk but is at the age where he is active and mischievous.

This condition also affects his school attendance, since I don’t want to send him there to sleep through class or cry all day due to his sleepiness.

We have another sleep study scheduled a few months from now, so hopefully the doctor can come up with a plan to help us both. Until then, please pray for his health and my strength!

Thanks for reading…

Art Imitates Life

Although I work from home, I try to limit the amount of television I watch each day. I set the DVR to record certain shows that I enjoy, and I add movies and shows to my Netflix account.

Anyway, over the past several weeks I have noticed more actors with disabilities and story lines covering topics about disabilities.

For instance, the series This Is Us is now dealing with one of the siblings having a baby that was born blind. Now I already find it hard to get through one episode of this show without shedding a year. They have great writers and engaging content that keeps me watching. After the scene when the doctor tells the parents the diagnosis, I was balling. I know what it feels like (in real life) to feel helpless as a parent.

Then there is my British crime drama Shetland, where one of the female actors from few episodes is deaf. As I watched, I became curious about the way she spoke and how she studied the cast members lips before responding. So, I looked up her bio and found out that she (Sophia Stone) was the first deaf student to win a place at RADA drama school.

My point is, art should immitate life, however complicated it might be. I was happy to see these characters on television because it lets me know that anything is possible for my own child and for others.

Unless you are raising a child with special needs….

Unless you are raising a child with special needs, you don’t know what it is like to take everything you thought you knew about parenting and throw it out the window. I read this article and it resignated with me so much. Especially since I am always getting parenting advice from family members that have no idea what me and my household deal with on a day to day basis. Sometimes it makes me feel angry to hear them provide “advice” as if normal parenting skills can be applied to my situation.

Anyway, here’s the link for the article. Hopefully it can shed some light on the subject.

https://l.facebook.com/l.php?u=https%3A%2F%2Fmeaningfulmama.com%2Funless-you-are-raising-a-special-needs-child-you-dont-understand.html&h=AT0-hdeXZzO1o-JgZ6WTmeH0jJV6QOFb-515chhduZLq-LBQZiMe1esJNIGXOY5vsRZB4EXrYtrEByAXnzJfEjjqcczBg_RPZvnYsUNuoHOQ7CGxqV4-_O3cbVgtMCOc&s=1

Back in the Saddle

So it’s been a few weeks since I lasted posted anything on my blog, although I am constantly coming up with topics to write about. I have managed to glance at my Word Press app to read over some of the posts that catch my eye, and even respond to a few of them. But my goal was to devote at least one day a week to my blog after starting a new part-time job. Unfortunately that has not been the case.

My day starts at 6:00am, waking up to dress and feed my 5 year old so that he is ready when his school bus arrives. Then it’s time for my daughter to get up and ready for school. Thankfully she is old enough to dress and feed herself, so it’s just a matter of making sure she gets out of bed. I drop her off at school, then I do chores, run errands and get at least 4-5 hours of work done before it’s time for the kiddos to come home.

By the time I get my daughter a snack begin preparing dinner, feed and bathe my son, and get him bed, I am exhausted. So this routine has made blogging feel like a chore rather than a passion.

Today I decided to stop for a few minutes to make an effort to “get back in the saddle”. It’s important to make time for things and people that are important to us, and writing about my life as a caregiver is important to me. There are so many misconceptions about having a disability that I feel I must shed light on, in an effort to help others understand how challenging it is for the individual and the caregiver, as well bringing awareness regarding the limitations society puts on people with disabilities.

As always, thanks for reading.

Back to School

Most children are getting ready to return to school or they started last week, and I have happen to have some concerns. My son is starting Kindergarten and he will be attending class for a full day rather than half a day, as he has done the past 3 years. He has special needs, so I am unsure of how he will handle the transition.

Don’t get me wrong, I have met his teachers as well as the other staff members that will be working with him, and I am pretty confident he will be well taken care of. His private duty nurse will also be accompanying him, which makes me feel more at ease. However, my son tends to have behavioral issues due to the fact that he is non-verbal and cannot express how and what he wants.

Then there is the issue with his sleeping patterns. He suffers from apnea, in addition to being visually impaired. This affects his sleeping habits – causing him to go long periods without sleep or sleep during he day and staying up at night. I just hope that I won’t be receiving frequent calls asking me to come and get him.

I pray he has a productive year, and I wish the same for all of the other students around the world, healthy and otherwise.

Goodnight 😴

2019 Charge Syndrome Conference

I am the caregiver and mother of a son that as diagnosed with Charge Syndrome shortly after his birth. Charge Sydrome is a complex genetic syndrome which occurs in 1 out every 10,000 births. This year’s National Charge conference was held August 2nd through August 5th, and fortunately my family and I were able to attend.

First off, it was great to be around parents that understood the challenges of raising a child with multiple disabilities. No one asked awkward questions or gave long stares during g-tube feedings or during sudden meltdowns, because it was all familiar. We were able to bond…to swap stories and give advice on how to help improve the situation.

The other great thing about the conference was the fact that the kids and their siblings could attend camp based on their age group. Due to the multiple medical and physical issues chargers deal with, they are often anti-social and prefer to play alone. As a parent I am concerned about my son being comfortable interacting with other children. I don’t want him to feel isolated or be teased for being different. Not to mention my daughter was able to bond with other kids her age who knew how she felt.

Last but not least, there were seminars ranging in topics related to symptoms of Charge Syndrome. Not everyone with this disorder has the same abnormalities, so it was great to be able to chose the ones that were relative. For instance, my son can be very hyperactive and exhibits aggressive behavior when he is seeking or has too much sensory input. There were speakers that specialized in that area, providing helpful information and tips on how to manage this behavior and why he behaves in this manner.

People with disabilities (and their parents) often feel isolated – like no one fully understands what it’s like to be in their position. It was a wonderful thing to be around others that could relate.

As always, thanks for taking the time to read my post.

Flexible Work Hours

For the past 2 1/2 years I have been searching for a part-time job, and I might as well search for a needle in a hay stack. Sure, I could probably find work at a grocery store or women’s boutique, but what are the odds that management would allow me to set my own days and hours? Highly unlikely…

You see my background is in accounting, and up until 5 years ago, I was accustomed to being in the office 40-50 hours a week crunching numbers and submitting financial reports. As boring as that job description may sound to some, it was something that I not only enjoyed but was good at it. There’s no need for me to go into details about my child’s medical conditions, since I have discussed this multiple times on my blog. So let’s just continue on with the subject at hand.

After taking several months off for my maternity leave in order to recover from having a c-section and to spend time with my child (who was in the hospital for almost 3 months after birth), I went back to work full-time. We had a home health nurse that stayed with him while I commuted 3 days a week to the office, and worked 2 days a week from home. This went well until it didn’t.

Life was stressful enough juggling work and home, but to make matters worse I started to have issues with my private insurance. My company decided to switch to a different insurance carrier, which did not cover the nursing hours he needed. Of course this made absolutely no sense to me or my husband, so we appealed. The answer was still no. So I had to make a decision rather than a choice – become his full-time caregiver.

What other choice was there? Put him in a facility and not care for him? Definitely not! Christopher is now 5 years old and I resigned from my job in 2015. For these past four years I have searched for part-time opportunities that allow for flexible hours or a set schedule so that I am available to manage his care. Although his life is not as hectic as it was in the beginning, there are still therapy sessions, doctor’s visits (multiple doctors), and set hours for his nurses; which means that my options are limited.

There are days when I miss the work, adult conversations (not medically related), and I miss the money. Don’t get me wrong, I love my son and I have accepted the responsibility of caring for him. However, I would be lying if I said I don’t feel lost and helpless at times. I want to get back out there but not if it means not being there for my child.

Thanks for reading….

Ways to Provide Sensory Input

I have been searching for ways to provide sensory input for my son, because he is becoming harder and harder to manage. He has hearing and visual impairment, so without that additional input, he climbs the furniture, jumps and falls down purposely, and throw anything in his view.

This makes it difficult to get him to be still for more than a few minutes at a time, which makes attending school, church or any function that requires sitting and being quite a challenge. Then there is the possibility of him getting hurt. He has no sense of danger, so pumping his head or falling doesn’t seem to bother him at all. (Of course it bothers me, his nurse, teachers, etc).

Here’s what I have learned so far. Things like climbing, jumping and swinging are great ways to obtain sensory input. Try to find safe places for these types of activities, such as a bounce house, an exercise ball or a climbing wall for your child to play in or on. This will help them calm down, relax and concentrate better. If your child seeks input before bed, deep pressured hugs and weighted blankets can help them sleep better.

For more information on the article, please go to https://www.lcfkids.com/single-post/2015/11/18/4-Ways-to-give-your-child-sensory-input. I hope this information helps. I will let you know how it works for us. Thanks for reading.