Fighting for Family: A Battle That’s Never Over

One of Dylan’s favorite sayings is, “Are we done?” 

Lately I find myself asking this same question. Are we done? 

How many times can we fall and get back up? How many fights do we have to fight? When will we be done? Never. We are never done.

It’s been 23 years of loving Dylan— a lifetime of fighting; of falling down and getting back up. 

Sometimes, we have gotten up quickly, and sometimes we’ve barely gotten back up. Some fights are merely a minor battle. I win and I jump back up.

Some fights are long and exhausting wars that I climb my way back from. Lately, I have felt this exhaustion. It’s hard to explain, but the exhaustion I feel isn’t the typical physical exhaustion you may feel after running a marathon. It is mental exhaustion from fighting. Fighting for every little damn thing.

If you follow our story or know me at all, you might be thinking, “Why? Dylan is 23 and he doesn’t even live with her anymore.” That’s true. You might also be thinking, “Dylan lives in his own house with 24/7 care. She must be so relieved. What could she possibly have to fight about?” That’s just not the case.

I feel like everything is a fight. Some are minor scraps, some are battles and some are full blown wars. You see, I am Dylan’s voice…literally. Although he talks, it is not like how you or I talk. Dylan doesn’t have the communication skills to really tell me his wants, needs, fears, etc. So I’m left to figure it out and fight for him. Which is much more often than not.

Think about if you or your child needs blood work; a haircut; a dentist appointment; an ID renewed. You just go take care of those things. It’s simple.

For Dylan, it isn’t so easy.

To do any of these things, I have to call ahead of time. I explain him and his situation, make sure they can handle him,  make sure I can have the first or last appointment of the day…It goes on and on. With pretty much everything. 

I previously wrote a blog about the dentist situation when Dylan had a tooth ache for a year. We were actually asked to leave the dentist’s office and were told, “We can’t help him here.”

I can’t help but wonder, “Am I to blame sometimes?” Other parents and even caregivers have reached out to me saying how they make it work and I always appreciate the feedback and ideas of how they made it work for their child. However, there’s a common saying:

If you have met one person with autism, then you have met one person with autism.

I am often reminded how difficult Dylan is, and let me tell you—it is hard to hear your child is difficult. For as long as I can remember, I have been fighting for Dylan.  

Fighting to get him placed at the right school; to get him the services he needed; to get help from our county; to get caregivers; to get him into special needs camp; to find him a home when we realized he wasn’t going to thrive with us anymore.

In the midst of fighting for Dylan and everything he deserved, I had to fight for my family. Autism is hard on everyone. Of course, it is hard for the individual living with autism, but it is also difficult for the people around them.

It is no lie that my marriage suffered and my daughter suffered. Dylan couldn’t help his behaviors and the aggression that went along with them. I fought like hell to make our life as a family as typical as possible. I paid more money than I had to get caregivers so my husband and I could go on a date every Saturday. I paid caregivers so we could go on overnight getaways and—whenever we could swing it—we escaped for an adult vacation. I paid more for the caregivers than the actual vacation, but I was fighting for my marriage. 

I paid caregivers to come on Sundays so we could go to mass with our daughter,  Anderson. I know people at church shook their heads at me as I clutched my cell phone during mass just waiting for a call to come home due to some type of disaster. And those disasters happened: the chandelier pulled out of the ceiling; the toilet overflowed from things put in it; things on fire in the microwave and more.

Every time I had a caregiver work with Dylan on a Saturday during the day, usually for two hours, I took Anderson anywhere she wanted and we pretended we were “normal.” 

We went to Target or the mall or for lunch. We didn’t talk about how we would soon be rushing home and be greeted with who knows what. (Usually melt downs and broken furniture or holes in the walls.) Anderson grew up with chaos around her; a literal war zone-type atmosphere with stress at levels most adults couldn’t handle and behaviors that were violent that then led to fighting between Kevin and I.

I am sure maybe you have read or heard me say that what started the search for Dylan moving out was my husband telling me that he just couldn’t keep doing it. He couldn’t keep living the way we were living.

So, when Dylan was 16 we started searching for somewhere for him to live. This decision was something that gutted me and made my heart hurt. My baby, my Dylan, that couldn’t help this hand he was dealt. How could he not live with me? But how could my husband and daughter and even myself keep on? 

It was then that my fight shifted; first to finding the appropriate house for Dylan to move into, then fighting for Dylan to live with dignity and the care he deserves. No one will treat your child like you do and giving up the control of knowing everything is extremely hard.  

Most days I tell myself that I was born a fighter. I am here to fight for Dylan and I’ve got this. Now, I know I am also here to fight for others to have the independence they deserve and to have a place to call home and some peace for their families. Like the opening lyrics in Fight Song by Rachel Platton says: 

Like a small boat on the ocean

Sending big waves into motion

Like how a single word

Can make a heart open

I might only have one match

But I can make an explosion

All these battles, all these fights…I might only have one match, but I can make an explosion. 

I am not done.