“Time to take a bath. Let’s go get into the tubby.” The water has been running for the last several minutes. He knows what time it is, and still tries to hide underneath the coffee table – in the farthest corner, up against the wall, where an adult struggles to reach. By the time he comes out of hiding, the tub water is ice cold. Nothing like a cold plunge at 7:00 at night. So to show compassion, because who wants to take a bath in cold water, you add more water in hopes it is warm enough for your little one by the time he dunks his toes.
But before you get there, his fight or flight mode kicks in again, and it takes everything in you to protect yourself. Taking his clothes and diaper off is like wrestling a kangaroo who has the capacity to kick you in the face, bite your hands and arms, pull your hair, and scream. It’s not because he has been abused or handled inappropriately – no. It’s because he has severe autism and this is what he does when he doesn’t want to take a bath.
It’s what he does when he doesn’t want to do something you need him to do. It’s what he does when he wants his way, is told no, or you interrupt a preferable activity and give him a nonpreferred activity. It’s the battle of the wills, and all you can do is stand there and take it because that’s what you have been counseled to do – wait for a calm body, show emotion, then proceed. Because the alternative is to do what your parents may have done to you – yell, scream, and spank. I was spanked, and beaten with a belt a few times as a child. We all know spanking is greatly frowned upon today. So, this kid kicks my tail several nights a week, sometimes during the day too as I follow the directions of the professionals.
I’ve learned waiting for a calm body is best – both of us are calm. After all, my experience has been when he comes back from fight or flight mode, he doesn’t realize what happened. He smiles and acts like everything is ok. Meanwhile, my hair is disheveled, my breathing is a little heavier and my glasses are on the floor. But no worries because everything is as it should be in Neverland.
Does it make the journey easier for those of us who deal with this on a daily basis?
No, I’m afraid not, but it is many people’s reality today.
I read post after post of parents and caretakers, many grandparents, who are at their wit’s end, struggling in their marriages, trying to raise their other children, and losing their minds because they feel trapped, unprepared, ill-equipped, helpless, beat up, tired, exhausted, information overloaded, broke, frustrated, and dumbfounded over how they got here. Insurance is an issue. Daycares and schools are a challenge. Differing opinions on how to handle them abound. Getting therapy is difficult. Waiting patiently for appointments takes everything you have because you don’t know what to do while you wait. And the isolation you feel is horribly lonely.
Your kid bangs his head on walls and floors, screams, kicks, bites, throws food, runs away, doesn’t speak and so you feel tied to your house, afraid to venture out because many won’t understand especially when they hear the screaming like you’re hurting them. And then there are the kids who can’t speak, so their only mode of communication is to act out, headbanging, throwing things, getting physical, or crying uncontrollably. Sounds depressing, doesn’t it? It can be if you let it get to you.
How do I know this?
I live it every day. Some days are good, and other days are not so good. “But he’s so cute,” they say. Yes, he is, but don’t let that red hair lull you into fantasy land. Under that red hair is a child who doesn’t understand what is happening when he is in those tense moments, many self-created.
Is it his fault? No. Can he help it? I don’t think so. Do I believe he knows what he is doing? Sometimes he does. Other times, I think his autism limits his ability to think clearly. I also have to remember, he is only four, and he is developmentally delayed by at least a year. But that doesn’t lessen the butt-kicking we get weekly.
Do we love him? Most definitely. Would we make a different decision to take him in and raise him when his mother could not if we knew he had autism? No, we would still take him in and love him. We would still go to the ends of the earth and do all we could do to get him the help he needs, and that’s what we are doing.
We are doing behavioral therapy, food therapy, supplements, table time, outdoor time, playtime, doctor’s appointments, testing, and everything else we can think of to help him. Managing his care is a full-time job. Yes, many of those things are a part of parenting, but there’s an added factor – autism and the effects it has on all of the above. Will the decisions you make for your autistic child help or hurt him or her? Will it mess with their gut health, emotional health, brain activity, etc, etc? The constant demand of trying to navigate the autism road is not easy in a world of information.
I guess the reason why I am sharing this is three-fold.
One, I understand where you’re coming from if you find yourself in a similar situation. Been there, done that, still doing it every day and I’m 57 years old. This body and strength aren’t what they used to be. You have to be fast and alert to avoid a kick to the face when changing diapers. Don’t get me wrong – it’s not like that every day, but you never know when he decides he doesn’t feel like a diaper change or he gets mad because it’s bath time or tablet time is over. The older he gets, the bigger he gets, the stronger he gets, and the more we do not.
Secondly, for all those who have not experienced autism before – I’m not mad at you or hold any grudges against you. I ask you to consider spending a day or two in the lives of families who have autistic children and get a front-row seat to what happens. When a mom tells you she is at her wit’s end and is tired, she is exhausted mentally, emotionally, physically, and spiritually.
There’s the old saying, “My kid is always better at someone else’s house.” It’s true with autistic children too. He is always better at someone else’s house, even at church. Makes me feel like a horrible parent sometimes, but then I remember when my daughter and her friends were the same way. Her friends were always better at my house than at their parents’ house. It’s just what kids do.
So what can you do?
Ask those family members and friends if they need any help. What can you do to make their lives a little easier?
Can you volunteer to watch their child while they go enjoy a quiet meal by themselves for a few hours? What about making the special food some of these kids require, buying some groceries for them, taking their kid to the park, or playing with their child?
What about providing some house cleaning or some much-needed repairs around the house they are never able to get to because of their schedules?
I asked someone from church to come over and make phone calls for me and pay bills. It’s time-consuming and when you’re working full time and then you get off work and start your next full-time job raising a little boy, stuff piles up. And when stuff piles up, so does the stress, especially if you are someone who isn’t very good at waiting for things to get done. I asked her to research several websites I was given as resources to help me get respite care.
Lastly, what we all could use daily are your prayers.
Pray, pray, pray.
Raising a child with autism is not easy. Pray for him, for the parents, caretakers, grandparents, therapists, doctors, and all those who are living with autism.
Pray more people would become well-qualified therapists. There are not enough therapists or specialists in the autism field. The need is great, and the help is small.
Please pray public and private schools would invest in training for teachers so they can learn how to manage autistic children in their classrooms.
Pray for more doctors and nurses to get training on how to treat autistic children that come into their practice to be seen.
And finally, pray for all the children who have been affected by autism, boys, and girls of all ages who don’t understand what is happening in their bodies.
The last study I saw was from 2016, and it says that 1 in 39 children is born on the spectrum. Folks, 1 in 39 children born on the spectrum is dramatically different than 1 in 150 children years before. Fast forward to 2023, and I am sure those numbers have gotten worse. I’m sure it’s worse than 1 in 39 children.
It’s not just in the United States
Autism is not contained in the United States. I have personally messaged with women in India and a couple of other countries through Facebook Messenger who also have children with autism. They too, like me are looking for answers, and ways to help their children. This is not going away anytime soon, so we need to be doing everything we can to help each other.
More research needs to be done.
Research on the gut-brain connection needs to be done and more doctors need to become familiar with the connections. Not enough pediatric specialists are familiar with autism or the gut-brain connection. As a parent of an autistic child, finding someone who understands how this disease works is challenging. Add in the number of children affected, and the line to get help increases daily, sometimes waiting up to a year for an appointment.
Time to land the plane
I have tried to share everything I have learned so far on this blog site – everything from medical care, gut-brain connection, testing, behavioral therapy, resources, and testing. Someone else helped us by sharing their story seven years ago. Their sharing of their experiences and what they did, has helped us care for our little guy and get him the help he needs. I don’t want to keep the information I have learned to myself. Our little guy’s journey will help others.
If there’s one thing I know – he is here with us for a reason. God brought him to our home in 2020 right before the height of the covid pandemic. He has taught us lots of new things about himself and us, and when God purposes something in your life, you can believe that He will see it through to completion, and you will be better having gone through it.
As I told a friend the other day, I would be lost without the Lord and the village of people he has surrounded us with as we walk this autism road. I couldn’t do it without the Lord providing everything we need to care for our little guy. We love him very much and our goal is to give him the best life even with autism. God made him and knows who he is and who he will be, and we will continue to fight the good fight.
To God be the glory!