To Be The Best Caregiver I Can Be

November is National Family Caregivers Month. My fifteen-year-old son Tate has autism and my youngest daughter has special needs as well. Currently, I am also helping to care for my elderly parents. I was asked to write a post about being a caregiver. I took a stab at it and read it back to myself. I had written an essay that sounded like I was having a pity party about the all the time my kids’ disabilities have stolen from me. So, I tried again. The second attempt was an essay comparing the amount of time and energy I spent raising my typically developing children to the amount of time and energy it is taking to raise my special needs children. It really did not reflect the way I feel about being a caregiver at all. My third attempt was also sent to the trash bin.

It occurred to me then: I had been trying to write about the hardships of being a caregiver. There is no doubt it is hard. Everyone knows that. But what good caregiver dwells on all the negatives involved? Did my own parents keep track of all the times I woke them at night? Or vomited in my bed? Did they begrudge the money they spent on my education? Of course not. Good parents are not keeping score of all the difficulties they have with their child, or the sacrifices they make.

A good caregiver is a good one because he does the things he needs to do willingly. So I made a list. I made a list of the things that help me to be the best caregiver I can be in hopes that it might encourage others to be the best caregiver they can be.  

1 Laugh. I laugh when things are funny, and they often are. There have been times I have laughed to keep from crying. Remember to laugh. A sense of humor can make all the difference.

2 Smile. It’s hard not to be happy when I have a smile on my face, and it is hard to become angry or be unkind when I am smiling. A smile can totally change another person's response too. 

3 Sing. Just like smiling, it is so hard to be anything but happy when I am singing. Music is such a valuable tool. 

4 Cry. If laughing, smiling, and singing are not going to work today, a good cry might. But if you find yourself crying often and unable to cope, talk to a professional. 

5 Share. Find someone who will listen. Online support groups can be helpful when no one is physically close. I blog and have built my own sort of support group of followers who help me far more than I help them. 

6 Find a cheerleader. I have many cheerleaders. Some of them are part of my physical family and some are part of my church family. Some are online friends. Do not go to discouragers for advice or for cheering up. Do not go to the support groups that mostly talk about the hardships and the negatives when you are in need of encouragement. Surround yourself with positive people. 

7 Set goals, but set reasonable ones. It is helpful to have short-term goals. Some of my goals are very small and easily achieved in a day's time, while others might take a few days. It might even help to write goals down and be able to cross them off as they are completed.

8 Prepare yourself. It is much easier to prevent problems before they develop, than to fix them after they occur. I try to anticipate the things that might go wrong, and put a plan in place for the “just in cases”. When it is time for appointments or meetings, go prepared. Make and take a list of questions and concerns.

9 Control yourself. I cannot control others, but I can control myself and how I react to others. Remember that you are responsible for you.  Do not make matters worse by speaking in anger, or saying something you may later regret. There will be times when those around you who you had hoped would help, will not. There may be times when you feel resentful, if not because your child is disabled or your elderly parents are sick, then because the ones you thought you could count on to help, do not. But the kids still have to be fed, the sick still need to be looked after, and the trash still needs hauled out to the curb. It is up to you. You cannot control those around you, but you can control yourself.

10 Dismiss yourself. Sometimes I need a few minutes to regroup. When everything around you seems to be falling apart, take a deep breath, count to ten, say a prayer, bite your tongue, or walk away.

11 Forgive yourself. I make mistakes. I make a huge mess of things sometimes, and you will too. Nobody is perfect.  ♫ Let it go. Let it go. ♫  

12 Do not lie to yourself. Face your truths. Dwelling on the things you wish you could change will only make you miserable. Also, pretending problems are not really there does not work. Roll up your sleeves and do what you can to make things better. The grass is not really greener next door. That neighbor or friend who seems to have the perfect life with the perfect kids and a pocket full of money, has his own struggles too. 

13 Reward yourself. Whether it is something small like a soda, or something more substantial like a night out, I find that it helps if I have something tangible to look forward to at the end of the day or at the end of the week. 

I'm not an expert. I have made plenty of mistakes, but these are the things that help me to do what I do best. Perhaps these things could help you to be the best caregiver you can be too. 

Writing this has helped me to remember that being a caregiver is a privilege and a worthwhile and fulfilling job.

If you liked this post, you might also like this one...  Stepping Up To The Challenge

Encouragers are needed. Be one!

I have a lot of stories left to share and new ones developing daily so I will not be running out of material soon.  By the way, if you have any questions about autism, our foreign adoption, ADHD, or strategies that help us cope, feel free to ask. If you want to hear more about any particular topic, let me know. 

When I meet a mom or dad who tell me they just received a diagnosis for their child my heart breaks for them. I remember the night I self-diagnosed Tate with autism.  He was two and a half. The hand-flapping had just started and Tate was withdrawing more and more into his own little world.  He still slept with us, as he did not sleep well at night. Erratic sleep patterns are something many people with autism suffer with. That night, as I lay by Tate, he was whispering. It sounded ritualistic and I asked him several times what he was saying. He couldn’t tell me. He had lost much of his language by that time, and he was often speaking gibberish. It was like a foreign language he could understand and he was talking to someone I could not see. When he was finally sleeping, I got up. I was worried sick, literally. I got online. I started typing in some of the symptoms I had seen. I thought I would find that Tate was mentally ill. Instead, I found the same word over and over: autism. When I read the signs of autism, Tate had almost all of them. I woke Shawn and we talked for a long time. He was able to go back to bed, after a while, but I stayed up all night, reading and trying to find answers. What were we going to do? How would I be able to deal with it all?

This was taken right about the time of the diagnosis.

When I meet a mom or dad who tells me they just received a diagnosis for their child, I remember all the things I should NOT say. I should NOT say “I have thought for a long time there was something wrong.” It is like telling someone who is overweight they are fat. They already know it. How would it encourage a devastated parent to tell them that you have suspected for a long time their child was not developing as he/she should? The parent “knew” too but needed to figure it out for themselves and deal with it before making an announcement to the world. Does an “I knew before you did” attitude really need to be voiced? 

I should also NOT say “Everything happens for a reason.” Think about it.  What is that supposed to mean? I have heard it from people after I lost a baby, after Tate was diagnosed with autism, and after other tragedies. Everything does not happen for “a reason.” God doesn’t reach down and zap people with tragedies or illnesses so others can learn from it. Bad things happen to good people every day and it is not God’s work. If a finger should be pointed, then point it at Satan, not God. Everything does not happen for a reason. Babies do not die for “a reason” and little boys do not get autism for “a reason.” We make the best of these bad situations and learn from them but it is not “a reason” for what has happened. See Rule #11 in My 15 Truths of Parenting Special Kids.

When I meet a mom or dad who tells me they just received a diagnosis for their child, I try to encourage them. I tell them of other children I know with autism and the good outcomes I have seen. I do not tell them about the children I know who are not making progress. If someone you know is diagnosed with a health problem, do you tell them of another person you know who has died of the same thing? I have surrounded myself with encouragers. It is so much easier to give Tate and Sydney what they need when I have cheer leaders. If you are not an encourager, practice! I challenge anyone reading to encourage someone you know, this week, who is parenting or teaching a special needs child. Or encourage a handicapped adult. If you don’t know someone, then look around you. A lot of times you will see people with a special need returning carts at a store, wiping tables at a fast food restaurant, pushing a broom, or stocking shelves. I try to speak to those people as often as I can these past few years. Make eye contact, smile and say “hello” because many people treat them like they are invisible. I used to. One of those people may someday be my son or daughter… or your grandchild. Think about it. 

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Note: The morning after I found autism on the internet I got Tate into our pediatrician and he confirmed my fears but was not qualified to give us a diagnosis. The wait to get into a specialist was 3 months. In the meantime, we started early intervention by hiring a behavior consultant and developing a discrete trial program to teach Tate the things he was not learning. I will describe our discrete trial program and what early intervention entails in future posts. I will also describe that visit to the developmental pediatrician to obtain a diagnosis.

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