Keep On Keeping On — No Stone Left Unturned

I had a plan. This has happened to me before. I have a plan for my next blog post. But then something changes. Maybe I am just feeling a bit overwhelmed and just write from my heart. One week a couple of my readers shared with me that my last blog post was a tough one to read. So the next week I decided my blog should be more light-hearted.

Yesterday I ran into a friend. She shared with me that she had a friend that was touched by one of my recent posts. I was happy for the feedback. Because it seems that just as I start to feel overwhelmed with keeping up with writing about our experiences, I get rejuvenated by a conversation such as this one.

Her friend felt peer pressured into trying a therapy for her son. A therapy that she felt would not be a good fit for her family. But she relented. The experience did not end well.

Over the last several weeks I have been writing about several different therapies that we had researched, considered and in some cases tried in our efforts to alleviate Travis’s symptoms associated with his many diagnoses.

Some that we tried did not work for Travis for one reason or another. But based on positive testimonials written by others, must be working for some individuals. Others we decided to forego after research and consideration. We decided that they just were not a good fit for our family.

Like her friend, we too have received input from friends, family, acquaintances or even strangers, I’m sure with good intentions. Usually. I especially love the advice from acquaintances and strangers that do not know a thing about our story. And/or do not know a thing about autism. Or have any experience dealing with a loved one with mental health issues.

When others have advice or suggestions, they may not know that we have already tried that therapy. Or have at least already considered it. Sometimes the advice is about what worked with their normal developing child.

I have already shared that regardless of what we have tried or decided not to try, that each family needs to make decisions based on what their heart or head is telling them. Just because something may or may not have worked for us does not mean it is a good fit for another family. Each family must travel down their own path.

I am saddened to hear that she felt peer pressured. Sometimes others give advice without knowing the ins and outs of caregiving for a loved one with a disability. But even if they do have that type of experience, it is not the same story that another is living.

As parents of a child with a disability we must simply trust our gut. We can listen to the input of others. Maybe we do some further research. Or maybe we chuck it in the f*** it bucket and keep on keeping on.

There have been many times I came across a therapy that I thought might work. And I get Travis to give it a try because I remind him of our pinky swear deal. But ultimately it is up to him if he decides to continue a therapy once he has given it a try. Because it is his life.

I have written in the past about how Travis decided not to follow the gluten and casein free diet after he moved out. I was disappointed because I thought it may be helping with his behaviors. But he is impulsive. He is not able to see the effect this choice has on him. And he wants to fit in. He is already so different. And he likes pizza! I mean, who doesn’t?

Making good food choices takes effort. For all people. And even when we know that eating better will help us feel better, many of us still struggle making the right choices. I imagine it is way harder for someone that struggles making good choices and decisions.

I had to let it go, I am no longer preparing his daily meals. And I am not there to offer support in making a better choice. Even when I am there all he hears is me nagging. I have learned to pick my battles. Most days this is not one of them.

As caregivers we are all just doing our best. Some days our best looks better than others. Our only training is on the job training. We make mistakes. Because we are human.

Caregiving for a child with a disability is just plain hard. Period. I am positive that there are parents that do a much better job than I do. I once read a story about a father that started running marathons, pushing his disabled son in a special wheelchair. I immediately felt guilty. Like I should be doing more. And for feeling resentment for my situation. And I am also sure there are parents that don’t do as much as I do. Travis’s case manager tells me that I do more trying to help Travis than any other parent on her caseload.

It’s not a competition. We are all doing our best. When Travis is having a rough day, we all end up having a rough day. It’s just the way it works. When Travis is having a particularly hard day, I take a deep breath. I close my eyes. I picture myself putting on what I call my “thick skin coat”. I imagine myself zipping it up. I don’t think he is intentionally saying hurtful things to and about me. When he hurts he does not know what to do with those emotions. So they come out in not so good ways. And harsh words.

Whoever said that sticks and stones may break my bones but words will never hurt me was lying. Words do hurt.

My “thick skin coat” is designed to protect me. To keep me from engaging. I know from a ton of experience that if I engage it will result in a meltdown. But it is hard for me too. I describe myself as Travis’s kicking post. I think he takes out his frustrations on me for a couple of reasons. First, because I am the person that is there. I do most of the caregiving. I am more available. Tracy is working. But I am also better at it. I am more patient and more nurturing. Tracy will not argue with that assessment.

But I also think that Travis takes out his frustrations on me because he knows that I love him no matter what. That I approach each day as a new day. I will love him tomorrow. Again, no matter what. Moms are as strong as they come.

Starting each day as a new day takes a great amount of effort on my part. I do not hold a grudge. It is not good for either one of us. Even when he is having a rough day I answer the phone every time he calls. Because what if? What if I don’t answer and something bad happens? Oftentimes just hearing my voice calms him. And sometimes I can help him work through his issue. His anger.

I get upset when others do not treat him well or with patience. He didn’t ask to be different. All he wants is to have friends and be accepted. I simply must model what I expect of others. And maybe just maybe in doing so I will teach others to do the same. To show him compassion. To show individuals with disabilities compassion.

Travis has two nephews that adore him. Just the way he is. They are seven and eight years old. They do not see him as different. They see him as their quirky uncle who is always ready to play. He is the zombie that chases them. He is the horse they can ride. He loves the arcade as much as they do. (Until it gets too loud.) He is really good at helping with lego sets. The world hasn’t hardened them yet. And they are following the example of their family.

Sometimes Travis apologizes when he has a meltdown or uses harsh words. Most times he doesn’t. Unfortunately his apologies always include the word but. Which in our family is a no no. I’m sorry but you… According to him his behavior was a result of something I said or did. In essence it was somehow my fault. I do not believe he fully understands the effect his behavior has on others. On me.

As caregivers we hear how important it is to take care of ourselves. But the constant emotional roller coaster leaves me exhausted. I fall in to bed, beat. I get that it is important to take care of myself so that I can take better care of my family. It is difficult to find the time or energy.

Respite is hard to come by. You’ve heard some of my stories about setting up respite only to get a phone call with questions about how to handle a situation.

If you are a caregiver you know that what I am saying is oh so true.

Now I want to talk to those of you who are not a caregiver, but you know one. Or more. You want to help. You just don’t know how. Maybe you have even offered to help. And we just say thanks for the offer. To tell you the truth we are accustomed to being the helper. We are not good at admitting that we could use some help or even articulating what we need.

Those of you that know me know that I am big on participating in random acts of kindness. I work on this concept with every one of my CASA (Court Appointed Special Advocate) kiddos. Being kind to others helps them through their own trauma. I want to do my small part to mentor them into being good human beings. One of my favorite sayings is, “Be Kinder than Necessary”. I have even colored and framed this saying in posters for some of the kiddos. (Because coloring is supposed to help with my anxiety. From my constant worry!)

November is right around the corner. November is National Family Caregivers Month. If you know someone that is a caregiver, then you know someone that could use a lift.

I challenge you to commit a random act of kindness for a caregiver that you know. Don’t waste your time asking what you can do to help. Just do something. Caregivers have a high level of stress and fatigue. What can you do to help give a caregiver a lift? Need some ideas?

Cook a meal and deliver it to them. I know for me I appreciate when my support tribe cooks a meal for me to bring to Travis. I spend a fair amount of time preparing meals for him, so that he gets at least some healthy meals! I have had friends that have made meatloaf, elk steaks, or donate leftovers for Travis. I have had friends donate elk meat for his freezer. He does not cook for himself. Not for lack of us trying to teach and support him in cooking. In case you’re wondering. And hey, I am just using our story for examples! You do not have to cook a meal. (But if you did I wouldn’t turn it away.) ;)

Send them a card and tell them what an amazing job they are doing. My support tribe has done this for me and I know it makes me feel better. And I have saved some and read through them on days I need encouragement.

Give a caregiver you know a gift card for a massage, a pedicure, maybe a movie. Because caregivers need to be reminded to take a moment for themselves. I know that my support tribe have also been awesome about giving me gift cards to use for my CASA kiddos. One friend told me that she would not be able to volunteer with foster kids because it would be too hard for her emotionally, but that she could help me do it. I cannot say enough how much I appreciate these random acts of kindness!

Send flowers. I do not know of a single person that does not smile when they receive flowers.

If you know a caregiver with kids, take their kids to a movie or the park. So she has time to use her pedicure gift card!

Deliver a care package. Maybe it’s coffee and muffins. Maybe it’s lotion or bath bombs!

Listen. This is a big one for me. I have people in my support tribe that are good listeners. They ask if Travis is ok. They ask if I am ok. And they listen. I don’t need people to come up with a solution. Sometimes I just need a hug.

I speak from experience when I say that small gestures are so meaningful and appreciated to my overwhelmed soul.

And to my friend’s friend. I hear you. I see you. I understand you. You are not alone. And I want you to know that we all have moments that we are not proud of. Not just parents that are also caregivers, all parents. All parents get it wrong at times. It’s important that when we do we apologize.

And then we move forward. And keep on keeping on.

“Keep on keeping on, no matter how hard the going may be.” - Napoleon Hill

Travis celebrating his birthday with his nephews. I’m not sure what I said to get this reaction, but I am sure it was funny!