Will It Always Be This Hard?
I read a blog post today. It was written by a super exhausted mama for the super exhausted mama. Which obviously caught my eye. That’s me. I work full time. Two kids. One with autism. Three dogs. Home owner. Friend. Daughter. Spouse. I spend my days sharing autism, advocating, attempting to have a social life, trying to drink enough water, playing with my kids, exercising, fighting with Cooper over eating and communication, cooking dinner, cleaning my house, wishing I could walk my dogs, get a good night sleep and pee alone. You get it. Life is busy.
Part of me loves the chaos of a full life. I always have.
The article touched on how the hardest years for a mom are when her kids are young. There is so much demand on them. So much stress. She said we just have to make it through the hard years and reassured her readers that the hard years don’t last that long. By seven or eight our kids are dressing themselves. Practicing some self care. They will start to get friends. They will learn to play by themselves. They get hobbies. They need us less. They get their own lives. And with that comes sadness too.
Just Make It Through
The author said that at some point all kids grow up. By 16 it’s almost like we as parents don’t even exist. She said eventually life slows down. The demands lessen. We will eventually find time for ourselves again. We will pick up a book or go for a run without feeling guilt or stress.
We just have to get through these hard days and nights.
She said we will miss the hard years. We will long for the demands that our children once put on us.
The author made jokes about the struggles we go through. She mentioned potty training. Poop stories. The funny parts that push us to the brink of insanity. She talked about how moms often feel inadequate. How we feel like we are failing.
She said it won’t always be hard. Just make it through.
I read that article more than once.
And I thought the thought that is always running through my head, ‘But what if it IS always this hard?’
Our Life Is Different
My son has autism. Some say it’s severe. Some say it’s not. It doesn’t really matter I guess because I know where he is cognitively, behaviorally, socially and emotionally. He is nonverbal. He has no self care. He can’t dress himself. Or put on his coat or start a bath. He can’t walk safely down the road or in a parking lot. He has no understanding of safety. Or concept of reality. He is delayed in every single area. And as he ages it is getting more evident that he will be living with me forever.
Some people, typically people without disabled children, get mad at me for saying that. I just smile. They act like me saying that is limiting his growth. Or willing it to happen. Little do they know that every ounce of my energy is poured into my son. I spend every day trying to get him to have self care. To dress himself. To speak. To eat. To grow up. No one wants it more than me. No one refuses to give up except me. I’m in this until the end.
These people say his future is unknown. And while I know that is technically true, I also have a pretty good handle on what the future holds for my son.
I know because it’s been an emotional roller coaster of emotions to get to where I am right now. When my son was initially diagnosed I thought maybe, just maybe, he would eventually learn to talk and care for himself. I thought just maybe he would be able to get a job. Maybe drive. And just maybe live on his own.
My son is now seven. I’ve adjusted my picture of the future.
I will care for my son. I will dress him. I will bathe him. I will walk him to and from the car. I will safely buckle him into his seat. I will hold his arm while we walk.
I will fight with insurance companies, the county, the state and Medicaid.
I will worry. I will celebrate every victory. I will educate the world. I will praise and motivate my son.
I will never give up.
I will prepare for his care after I am gone.
My other son will grow up, move out and begin to live his life. My friends children will do the same. My husband and I will prepare for retirement. We will prepare for a life with Cooper.
And I will continue to wonder if it is always going to be this hard. The isolation. The need to always be on high alert and prepared for everything.
I often picture Cooper as a teen and eventually a man.
I wonder if he will still follow me around the house. Will he still demand me so intensely that at times it’s overwhelming? Will he always seek me out in a crowd? Will I always be his only person? Will I continue to provide all of his care? Will I always comfort him?
Will I always kiss his boo-boos? Wipe his tears? Hug his body? Tuck him in? Lay next to him in bed? Hold his hand? Wipe him? Bathe him? Will he still point out every airplane to me? Squeal with excitement at a sound or a color? Will he always show me his favorite pictures? Will I ever sleep? Will his rigidity and anxiety ever get better? Will autism control our lives forever?
I just don’t know.
My son is getting bigger. And I am getting older. I can’t lift him quite as nimbly as I used too. I can’t contain his meltdowns quite like I used too. I used to be able to hold his feet, legs, arms, hands and head with a simple bear hug and a squeeze.
Now, his body is too big.
I fear it’s always going to be this hard. And while most mamas can look forward to easier days I’m not sure if I can. And that in itself is hard.
I gave that blog post a like. I even tagged a few friends in the comments. Because, technically, she is right. Life is hard for moms. And for most, it will get easier. Most will make it through. Their children will grow up. They will get their lives back.
As for me, and other special needs moms, I just don’t know if it will get easier. And I don’t know if we will get our lives back. But I do know we will make it through.
I filmed this video over a year ago after a particularly hard autism day and night. Take a listen.
Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.
Oh, Mamma. I know exactly how you feel. I have a 20-year-old who is lower functioning than your sweet Cooper. He has seizures and severe scoliosis…which we can’t treat because he gets aggressive if docs try to touch him, and he wouldn’t be able to comply with post op or physical therapy. I’ve asked myself this question for 16 years. Will it get better. For us, in some ways yes (18 years of constant potty training has suddenly started to kick in a little), and in some ways, no. Tantrums from a 20 year old just don’t fly in public, so we are hugely limited. I used to want to travel to Haiti and Moldova do help my church do mission work, and I used to have an awesome career. I had to give up those things and haven’t gone out with friends or had a vacation in over a decade. I miss those things I can’t do. But an old friend put it in perspective. He said, “your friends are all around you, and your mission is at home.” For me, right now, I have to live with that. I try to do the job God gave me with as much joy and energy and creativity as I can muster for my son, and my two girls who deserve amazing childhoods and memories too. We make it happen. It’s different than how others do it, but we make a good life and great memories. Sometimes it is HARD, be we muster through by the grace of God. I keep remembering that He gave me this task, He knew I could do it, and I will not let Him down. I’ll just get creative in making a fulfilling life with the parameters I am given. You’re doing great Mamma. Things can always get better. But if it takes a while, you’ve got this. 😉
My son is 17. It gets better and worse. He finally got potty trained. He has learned, for the most part, how to bathe himself. He has learned, for the most part, how to dress himself. He still has no sense of danger. He can’t walk alone. I use a wheelchair cart or Caroline cart in most stores to keep him from bolting. It’s a good thing that he likes riding.
As time has gone on, he has learned to entertain himself. Some of the independence that comes with growing up does come to our kids. For mine it has been some of the self motivator to learn different skills. And he is slowly learning words.
But, like you, I accept that he most likely will live with me for the rest of his life. It doesn’t mean that I stop working towards him being able to communicate and live independently. It just means that I plan for the worst while hoping for the best. We’ll see what happens in the future.