Care for the Caregiver: Loving Oneself

As of 2020, there are approximately 50 million caregivers in the United States. Almost one-third of caregivers provide at least 20 hours per week of care. In addition, approximately 58% of caregivers are women. Caregivers typically do not receive any formal training and learn as they go. (Supporting Caregivers | CDC)

I never thought of myself as a caregiver. My daughter lost oxygen at birth, is cognitively and speech impaired, and as her mother, I was taking care of her. When she turned 18, I started receiving Adult Services Pay to take care of her in the home. Even then I found it difficult to “get paid” to take care of my own daughter.

As the years have gone by, I have appreciated the extra income to help care for her; although, it was not enough to allow me to be at home to take care of her full-time. The difficulty came when she was done with school. I needed someone to take care of her while I was working. In searching for a caregiver for a disabled adult I found the cost would be $15-$20 per hour.

Add in my drive time and I would have no money left from my paycheck.

I am sure there are many parents, legal guardians, and caregivers that cannot afford to work because they cannot leave their person at home alone. I am a single parent taking care of my daughter. I was in such a terrible position that I knew only God could take care of. “When I am afraid, I will trust in You.” Psalm 56:3 NIV. As always, God did come through and provided me with a job where I work from home and have a lot of freedom.

We need a lot of freedom when we have another person to care for. We must take them to their appointments and be there for them in the moments they need help, which can be any moment any time of the day. We are 24-hour caregivers. Then we have our own appointments. Looking back, I don’t know how I worked full-time while my daughter grew up. I had help for sure, but I was still the one to take her to her appointments, then I had my own appointments. Missing work was such an issue, but necessary.

The subject of caregiving is so large with so many different topics. Today, I want to speak to all of you about your own care. Whether you are caring for someone young or old, or in between. We are still caring for another human being, which takes away from our own self-care and can take a toll on our health.

“Caregiving is also a public health concern because it can lead to physical, emotional, psychological, and financial strain.” (Supporting Caregivers | CDC).

Being a caregiver can result in depression and anxiety.

At least 1 out of 5 caregivers report fair or poor health. Most of us tend to neglect our own health when we should be making that a priority. We cannot take care of our loved ones when we are not feeling well or are not healthy ourselves.

This is to urge all of you, no matter what age you are as a caregiver, to take care of yourself. We all have different things we enjoy doing. Make time for those things that bring peace to your heart, mind, and soul. Quiet time is one of my best escapes and is the most healing for me. I do my best to spend at least half an hour a day sitting quietly, listening for the voice of God to bring me peace and to guide me on this journey.  I also make sure I go to all my doctor’s appointments and routine checkups. Ladies, make sure you get your yearly mammograms.

I know this can be a difficult subject because some of you do not have the means to get even half an hour to spend to yourself. This is to urge you to find someone and ask them to help you. If you absolutely have no one, Community Mental Health offers much help with obtaining the assistance one needs.

Other important things that help us gain strength, so we can be our best selves when caring for another, is to make sure we get plenty of nature, exercise, and laughter.  

Seek out help from respite care.

. I cannot urge these things enough. Without all of this, I do not know how I would be coping now that my daughter is 30 years old. My life, since she was born, has been happily dedicated to caring for her, but I also know I need to have a life of my own that fills me up. This is not to say that having a life of my own is not challenging, but I do the best I can. Something is better than nothing.

Sometimes, it is like we are forgotten. It can feel this way because others do not know the true depth of what we are dealing with. We can’t expect others to know, they are not in our shoes. So, we need to reach out to find the help that we need. This is not only for you, but also for your loved one you are caring for.

Do your best to live in the moment, one day at a time. “Spending your days doing what you have control over (your thoughts, words, and deeds) and leaving the rest to God is the only way to peace, calmness, and yes, joy.” (Rosenberger, Peter, Hope for the Caregiver 2014).

Being Positive

I believe our attitude can make or break a situation. I also know that we, as humans, will have difficult days. I believe it is imperative that we do our best to not let difficult days break us. Somewhere within us, we must find something positive to help us through.

There are a lot of things I find positive about being a parent of a child with special needs. I hope this encourages all of you because I am sure you will be able to relate to most, if not all of these.

First and foremost, having this beautiful child has brought me closer to God in so many ways. I have needed and leaned on God more than anyone else in my life. I know that nothing works without God. Without Him, I would never have been able to get through the tough times.  

Another positive, I get to be her mother. She is the most beautiful part of my life and has brought so much beauty, joy, and growth.

I learned early on that I had strength I never knew existed within me.

. ‘Wow!’ is all I can say. I am truly amazed at some of the things I was able to do, make happen, and hold myself together while doing them. I have been able to bring that strength into other areas of my life as well.

My daughter has made me an advocate and a warrior. My mother would often say to me “You can so easily advocate for Emma, but not yourself.” My mother helped open my eyes to how little I was caring about myself, she was right, and I now easily advocate for myself. It does kind of give the feel of being a warrior.

I have some wonderful friendships that could have only come from being Emma’s mom.

These friendships were easily developed, and there is an automatic connection.

I even have friendships with like-minded parents whom I have only spoken to on the phone. I have never met some of these women, but I know if I need something, I can reach out and be understood. It is heartwarming to me that we stick together and support each other. I feel that is just another part of God being with me.

I never take anything my daughter achieves for granted, as I am sure most parents don’t either. My point is, there are many things that others would consider “small or insignificant” that in her world are huge or difficult. For example, she is now able to do her own wash, with some verbal cues. That is amazing to me. I wasn’t sure this would ever be something she could do. She is still learning to fold her clothes, but when she does that, I will celebrate that with her.

The main point of this blog is to help us all remain positive.

There are always going to be days that we have to pull ourselves out of a pit, all that matters is that we do, because we have these special ones that need us.

All the glory goes to God. Turn to, trust in, and rely on Jesus. “I keep my eyes always on the Lord. With Him at my right hand, I will not be shaken.” Psalm 16:8 NIV.

Speech Disability – Pushing Through the Pain

My heart broke today, as it has so many times before. The speech barrier is not only difficult and frustrating, but it can also be heartbreaking.

My daughter and I have a unique way of communicating, as I am sure all families with a speech impairment do. There are so many things that I understand almost telepathically. Those are the awesome days that seem to run smoothly.

I look at my daughter when there is a group of us sitting and talking, and she is so patient, and she just sits and listens. Sometimes she will grab my arm with something she wants to share and then I am her voice. I always say what I believe she wants to share, and I then verify with her that I said what she wanted me to say.

I always try to include her in the conversations somehow, I’ll ask her a question, or by saying something about her to share with everyone. I can tell, everyone kind of forgets about her sitting there. They don’t talk to her as if she can’t hear just because she can’t talk.

No one does this intentionally, but it still makes my heart sad.

When she is with her group of friends, they all hang out with her, talk to her, hold her hand, and they too have a unique way of communicating. I can see that they naturally accept her just the way she is.

This isn’t to say that other people she spends time with don’t accept her, it is just a different kind of acceptance. Then there are the challenging moments or days. We have had to play a sort of charade many times over the years when our telepathy was not working. I have to ask a lot of questions and sometimes it can get exhausting trying to figure out what she is trying to say, especially if it goes on for an entire day about different subject matters.

Then there are the moments she gets angry and frustrated and then I am frustrated and then she never gets to share what she wants to share. I put myself in her shoes (the best that I can) and I cannot imagine how it must feel to not be able to say what I need to say.

I remember a time when I was a young girl. I had some exciting news to share with at least one of my six other family members. When I got home no one was there! I was so sad and felt let down.

I just remember how lonely that felt.

Back to what happened today. My daughter and I were going out to lunch. We had decided on a place and when we pulled into the parking lot she pointed at another place. I, of course, assumed she was saying she wanted to go there instead. So, I asked her that very question only to be told “no”. Now I am really confused, she is frustrated and then I am frustrated. We sat in the car for ten minutes trying to communicate. She was just wanting to talk about the other restaurant and our future plans to go there with a friend.

Finally, we got to our seats in our place to eat and she kept doing sign language for “sorry”. I told her again that she has no need to be sorry. Then she started to cry. She cried because she wants to be able to talk like the rest of us. That is what rips my heart out. To see my sweet girl cry because she cannot talk. It breaks her heart.

The amazing part of this story is that I can count on one hand the number of times she has cried about this. She is an amazing woman with great strength. She remains peaceful and accepting.

There are many people who have a speech disability.

There are many forms of communication such as sign language and assistive speech devices.

My daughter has some finger coordination issues, so full sign language is out for her. She has a speech app that is an amazing product, but she tends to be uncomfortable using it. I’m not sure why, but I think she does not like others to wait for her, or she feels embarrassed to use it. Many of the people in her life have tried to encourage her to use it more. That is a work in progress.

The reason for this blog is to remind others that your child is not alone and neither are you. I know there are days I feel like we are the only ones on the planet trying to communicate with such great difficulty. I know this is not true, but she and I are alone in moments of struggle.

Seek out all the help you can get for communication and try to stay calm while trying to communicate. I know firsthand this can be difficult. We are all human and get frustrated. The thing is, our children pick up on how we are feeling in the moment, and it will escalate how they are feeling. I say to all of you… strong and calm!

The Joys: Life With My Special Daughter

The reason I write is to help others. When I started out on this journey with my baby, I was young at age 23. I would have loved to have blogs from other parents and caregivers. The more advice the better.

That doesn’t mean I would have had to use it all, and neither do you, but even if one thing helps you, then I have met my purpose. I hope all of you will use this piece of advice.

Focus on the joys! Hold onto the joy and let it bring more joy. You will be able to look back and know you enjoyed the time with your child no matter how much care is involved. Write the joys down from small things to big things because even small things are big. Take photos to look back on these moments.

I think we all sometimes get so caught up with our busy schedules and caring for our children that we can lose sight of the joys our children bring to our lives. I want to lighten things up a little bit with some fun stories, and some heartwarming things that show how much purpose our special children have.

Where do I begin, there are so many joys.

One summer, When Emma was 9 years old, we had a yard filled with dandelions. Most of us would find a field of yellow dandelions beautiful, but then we all know they are considered “weeds”, so we mow them down. Dandelions serve many purposes, including health benefits, so are they really weeds?

That summer Emma was thrilled with them. I have pictures of her pulling them and carefully holding them in one hand while pulling them with the other. She brought them to me, just as most children do. They were displayed in a vase on the table and left there much longer than their short hour-long life span.

The most memorable part of the dandelion summer was when it was time to mow. When she saw the mower start out on the path of destruction, she ran out the door waving her arms all around, and proceeded to yell “no, yellow, yellow, yellow!!!”

She was devastated, so at the time, it broke my heart. I comforted her while explaining why we mow them. This is a reminder to me, and to all of us, to look at and care about the beauty all around us, and to care for God’s earthly gifts.

We all have a purpose on this Earth.

I have witnessed my daughter’s purpose many times. One day we were at the deli counter at the grocery store. Ahead of us was a man by himself in a wheelchair. Emma was 4 years old when she walked up to this man and put her hand on his shoulder. The two of them looked into each other’s eyes and neither said anything.

My daughter is speech impaired, so she really couldn’t say anything. They spoke with their eyes. She in some way comforted him bringing tears to his eyes. It brought tears to my eyes as well and is a moment I will never forget. It is moments like these that I hold onto and that brings the heart joy.

The next joy that comes to mind is one that I hope will encourage some of you starting out.

The joy of Special Olympics.

Emma did skills in basketball, track, and bowling. She was a part of Special Olympics from elementary through high school. The complete joy of watching not only her, but her friends, was extremely heartwarming. When they win their medals or ribbons, the excitement makes it impossible not to smile.

The friendships and bonds that our children make with being a part of Special Olympics is beautiful and so healthy for them. It truly builds confidence and a passion for achievement. They work so hard but have so much fun at the same time. To be surrounded by so much excitement and happiness feels so good for everyone.

Horseback riding is very therapeutic and brings about a purpose of taking care of another of God’s creatures. Emma didn’t just ride the horses, she was taught the importance of brushing them, petting them, and visiting them. The therapeutic horses are like a big puppy dogs. They love the human that spends time with them. This brings such a wonderful feeling of togetherness and is heartwarming and peaceful.

In today’s world, there are even more activities and groups that put on wonderful events for the disabled.

Anything from movies, painting, dancing, prayer groups, and game nights.

So many things that bring our children joy. If you don’t know of any organizations such as this check with the schools. Most groups like this leave literature about themselves with the school office. Other parents and teachers are always an excellent resource.

Most of these things give parents and caregivers joy as well because they might get much-needed rest or their own outing with friends. Or maybe their joy comes from being present while their children are involved in their activities.

The last one I want to mention, which is the current joy in my daughter’s life, is the Tim Tebow Foundation (TTF) Night to Shine Prom.

This amazing prom is held once a year the Friday before Valentine’s Day.

It is such a wonderful evening with a walk along the red carpet while everyone cheers in a greeting of excitement. Then on to the free photo shoot, then free dinner, and a free DJ to play dance music. Just about everyone in the room is on that dance floor.

All of this is totally free. I know the saying is “nothing in life is free”, but this really is. The Tim Tebow Foundation gives so many disabled adults a night to be kings and queens. I cannot come up with any words to express my gratitude for what TTF does. Thank you just does not feel like enough. Night to Shine | Tim Tebow Foundation

I believe it is important to focus as much as we can on the joys in life. When we are caring for another human, we can lose sight of the joy. It seems our concerns are best met on other matters. This could not be further from the truth. The best advice I can give is to tell all of you to focus on and hold on to the joys life with your special child brings.

Across The Years: Housing for your Child with Special Needs

Most of my blogs are geared toward those of you who are just starting out on your journey with your child/children with special needs. This one is no exception and may be one of the most important, I feel, so far.  

When I was young and found out my baby had some things wrong, I was devastated. No one knew how things would progress for her. I was trying to live and enjoy my baby, but there were so many things to consider for her life and her future. One of those things, which is one of the most important, never occurred to me….her housing.

My daughter and I would have benefitted greatly if someone would have been in our life then to tell me what steps to take for future housing. You see, at age 23 most of us are not thinking about 20-30 years in the future. Especially when we are scared and not knowing how to live in the current moment.

I told my daughter I was having some difficulty coming up with a blog for this month, and she told me to write about “our house”. She is speaking about our future home that is as real to her as it is here now. She and I both believe in our future home; we just must wait.

As Emma got older, I started to attend many educational seminars to help me feel more confident in making good decisions for her. I am a single mother and did not have anyone to bounce ideas off. I believe these things are even difficult for married couples who have each other to talk things through. These seminars are what gave me what I feel is the best plan for my daughter’s future.

These are true stories of other parents who helped me tremendously.

The first parents I heard from decided to move out of the family home that their son had always lived in, and they moved a roommate in with him. Then there are other families who bought homes to provide safe housing for their disabled children. They also put roommates in the home. I know another single lady who started a home of six men, one of whom is her brother.

So many ideas were available to us other than a group home! A group home in which I would have no say or control over who comes in or out, who lives or works there. That does not feel safe to me.

Right before COVID, I received a decent mortgage approval that would have provided us with a good home. Enough to give her her own place with at least 1 -2 roommates. Emma loves this idea.

This is very much her dream as well as mine. Unfortunately, as we all know, the housing market has not been doing well for the last couple of years, which has put our home buying on hold.

I have faith, and I do not want anything God does not want for us, but I feel this is a calling in my heart. I believe this is still yet to come. I want to make sure Emma is in a nice home, with nice roommates, and with proper care while I am still young enough to make sure of all of this. I would like to wean away and give her her own life.

There is obviously much more to this process and many things to plan for and consider.

This blog is to help all of you awaken to what plans you need to put in place for your child. Especially saving money so you know your child/children are well taken care of.

Starting these things while your child/children are at a young age can, and will, make a huge difference over the years. If you follow a strict savings plan for these specific needs, I can promise the money will add up very fast. Starting at your child’s young age will make a major difference in their life, as well as take a weight off you. That weight can be very heavy at times.  

It is our duty as parents and caregivers of other humans that cannot take care of themselves to make sure they are taken care of. For my daughter and me, I put God first because I know He will take care of everything for us. He always has and He always will.

I am trusting in God’s timing and very excited to see what the future holds for us. I hope this helps you so you can plan a future that provides peace in your hearts.

The Best Advice While Raising a Child with Special Needs

I found one common theme in the beautiful 30-year journey I have had so far with my daughter, and that is that all the best advice I ever received, was from other parents who have children with special needs.

There are so many others who may try to help, and I believe their intent is well-meaning; however, without walking this path it is impossible for others to truly know the full scope of what we live. Not just the trials, battles, and wounds, but most importantly the triumphs, joys, amazing relationships, and unconditional love. 

It is my hope that this blog will help some of you new parents and caregivers just starting out on this journey. At the beginning of my journey, I would tend to lean on and live by the advice of doctors, teachers, friends, and relatives. While their advice was sometimes good, and helpful, I always felt something about it just didn’t feel complete.

Once my daughter started school, dance class, and Special Olympics, I met so many parents!

There were 5 of us that met weekly for coffee while our children were in dance class. At Special Olympics, there was much time for conversation while waiting and watching the games.

There is a different kind of connection that we have. It’s a natural understanding and compassion. There are a lot of areas for obtaining advice, and I suggest using all of them, I know I did. At the same time, I would seek out those who really knew what it was like to be in my shoes.

The best school teachers my daughter had were those who had their own children with special needs. All her teachers were great, I am grateful for all of them; however, there was just something different, and more at ease, with the teachers who were on the same journey.

There was a lot of advice that I received from other parents that I would have never known about if not for them.

This blog is not to talk about specific advice, because there is so much information and help we all need, but to let others know that other parents can be, and most often are, our best guides.

We can all use help to take care of our children with special needs. Some of us parents are single, and others have challenges that require help. I strongly suggest you get to know the other parents along this journey.

Some of them will stay and some will go, but all of them just might touch your heart and take some weight off your shoulders. Some of the other parents might become your best friends and confidants.

I understand what “It takes a tribe” means.

Life with our special needs children takes a tribe. God bless all of you wonderful parents and caregivers. I know this journey can be exhausting, but it can also be beautiful and heartwarming. The more help and guidance you have the more you can enjoy the heartwarming events.

Some of the simplest advice can make a major difference in our children’s lives. This photo is of my daughter with her weighted blanket. Another parent recommended and made this blanket. It made a big difference in her life when her moods elevated, or she just felt anxious.

We Were Given These Children: A Letter of Encouragement

When I saw this tree, I could not help but remember God’s Word.  “He will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit.” Jeremiah 17:8

Being a parent can have its challenges for sure. However, being a parent or caregiver for a child with a disability takes challenges to a different level.

You were given this child or children…you, and no one else. You are whom they need and whom they depend on. Not only are you brave, but you also have the soul to truly love them even on their hard days.

You are motivated to give your child everything they need.

It takes a heart of courage to wake up every morning and do it all over again, yet you do it, every single day! I know you are exhausted most days, but somehow you pull through and take care of the needs of another human being, even before your own needs.

The best part is that you find such a deep joy in this child that God has placed in your care. God trusted you enough with one, or more, of his special children, and I know you make Him proud.

I also know, some days it doesn’t feel like anyone might be proud of us. We have some downright ugly days that we feel like such a failure. God does not see us that way. Remember to let go of past so-called mistakes. I do not believe there are true mistakes if we learn from them.

If we are feeling depressed that means we most likely are living in the past. If we are feeling stressed and anxious that means we are most likely living in the future. Live in peace in the now and enjoy your days with these special children.

Life is fleeting, too fleeting to live with any regrets.

These children with special needs look to you, to your smile, to your gentle touch, and your ability to maintain your patience, even during the most difficult of days. You make their life OK. You are the bright spot in their day, their comfort, and their strength. You are theirs and they are yours.

I write this blog because I know all too well how challenging life is for you. I too have a child with special needs. I know what most of you go through, as all our children have different levels of disability. At the end of the day, we all have commonalities on this journey. 

I know my daughter delights when I smile at her, when I hold her hand, and tell her how awesome she is. The joy she has brought into my life could never be replaced.  

To be fair, I must admit there have been many days I have wanted to give up, but this is not something we can just give up on. I know that is just my exhausted brain thinking and truly not where my heart is.

My heart loves this child with all my being. Don’t be too hard on yourself when there are days you want to give up, or you don’t feel like you can “do this” anymore. Say only kind, encouraging words to yourself.

My goal here is to encourage all of you.

. Especially during this time of year. I know there is a lot more stress in my home during the holiday season. My daughter started getting excited about Christmas around the time the stores started putting up Christmas things, which as we all know is before Thanksgiving, and some start around Halloween.

My daughter’s excitement turns into a serious case of stress and anxiety. One would think being excited isn’t a big deal. She is looking forward to a fun day; however, her excitement can turn into a meltdown at any moment.

I know there are many of you that can relate to what I am saying. We all have our own ways of helping our children through this exciting stress. For me, I find redirecting as soon as I see any hint of a mood. We put all our fun events on the calendar. When she is overly excited, looking at the calendar helps her cope.

Don’t forget to find some time for yourself during the holiday season.

. I know this can be challenging, especially for some of you that do not have someone to help you. For those of you that do not have help of any kind, I pray that some comes your way.

I believe God can provide whatever we need. I like to thank God in advance for providing whatever need it is I am asking Him for. Try that for yourself. Thank God for providing the right people, trustworthy people that will love your child and put their care and needs above all else.

Believe in yourself, and on the days you are questioning yourself, remember that YOU HAVE GOT THIS, MY FRIEND!!! Be strong, like a tree planted by the water.

Merry Christmas and Happy New Year from Emma and me!

The Path of a Caregiver: Surviving the Holidays

“Your word is a lamp to my feet and a light for my path” Psalm 119:105

Is there a person that relies on you for all their needs, most of them, or even just some of them? Either way, if you are a caregiver, you will have answered yes to this.

The holidays are busy enough, but when someone is a caregiver, life seems very overwhelming. One might become exhausted early into December and most especially before Christmas.

How can we enjoy the holidays and still be the caregiver our person needs us to be?

I know this is easier said than done for most of us, but you must take time for yourself. If you don’t it will only lead to burnout and exhaustion. This can lead to illness. We as humans need to rest and recuperate.

Keep an organized calendar so you can plan accordingly and look ahead at what you need to accomplish that day. Most importantly, try not to think too much about the days ahead. One day at a time and one step at a time.

Use your time wisely and listen to what your gut and your body are telling you. If you know you need a nap, and you have the opportunity to do so, take one.

Talk to others, and tell people close to you that you really need help. Maybe give several people some things that you could use help with. This way you are not putting too much on one person. If you don’t tell anyone you need help, there is no way for them to know. I know it would be nice if others just knew our needs and came to our rescue. I don’t like to ask for help, but I do so I can keep my head above the weeds.

It takes a tribe.

I love the way tribal Indians lived. A child is not raised up only by their parents.

For example: From the article “Family Life in the Culture of the Plains Indians” by Sally Painter “The elders of the family played a vital role. The women helped in child rearing and domestic chores. The elder men may have served on the chiefs’ council. They served their extended family as teachers, mentors, spiritual advisors, and confidants. The Plains Indian elders were highly respected by their family. The family took loving care of their elder members, and honored the infirm to ensure an honorable, dignified death.” (Family Life in the Culture of the Plains Indians | LoveToKnow)

In my opinion, this is what family is all about.

I find it extremely sad that family care, for some, is nonexistent. I often wonder, why are we here if we are not taking care of each other and being kind to each other with love and compassion? I believe this is one of the core reasons we are on Earth.

There are many other ways to take it slow and take care of ourselves during the holidays, and that should continue into the year. We all know these things, but it can’t hurt to say them anyway.

We can all use a reminder of what our bodies need, myself included: exercise (at least take a walk), comfort from a pet, plenty of sleep, eat as well as you can. I know, nearly impossible during the holidays. It can be really difficult to not have dessert at every gathering. I mean, we have to try our friends’ desserts! Take small portions so you can enjoy without overdoing it.

These are all things we know. My hope is that this blog will give you a little encouragement and strength. Remember to have fun and take time out to be silly.

Caregiving is a lot for one person, and no one can ever know what it’s like until they have walked the path of a caregiver.