A mom is a mom and caring for their child is in the job description.
I agree, of course, but caring for a child with severe autism is so much more. It’s an up all night, never sit down, zero to life journey.
I have 2 children. Cooper, my first born, is loving, caring, funny and was diagnosed with autism at age 3.
He is now 6 and his autism falls on the severe end meaning he is nonverbal with severe sensory issues and no self-care. This includes being potty trained.
There are days where I feel less like a mother and more like a personal care attendant.
I have entered uncharted territory with my special needs son.
I just put him on the bus. And by that I mean I physically handed his flailing, screaming body to the bus aide.
I am covered in sweat. I can feel the fresh bruises on my thighs. The pinch marks are visible on my upper arms. My face is beat red. My lip is fat from a swift head butt.
I smiled to his bus driver as he said, ‘tough morning?’ It took everything I could do to smile and nod and mutter, ‘you could say that.’
He gave me that look. Any parent that has been in the midst of an autism meltdown knows the look. It feels like pity. Typically it comes from a good place, but it still hurts.
I was embarrassed enough already. I felt disheveled and unsettled.
I was the mother to this little boy and I should be able to handle all that he can throw at me.
I mean….he is only six. But he is also nearing 65 pounds. He is strong. He is healthy. He is in way better shape than I am.
The second I turned to walk towards the house I burst into tears. I was able to choke them back long enough to turnaround and wave to my son.
Just like I do every single morning.
He needs to see my smile. He needs to know that mommy isn’t rattled. He needs to know that mommy is fine.
Except, just like the day before, I wasn’t fine. I was hurt and exhausted and confused.
As I waved I couldn’t help but think, 'Why me?' My hands were still shaking.
I knew I should hurry up and leave for work. I was already late. But I was rattled and crying and I looked terrible. I needed to quickly reapply my makeup but first I had to stop crying.
I refill my coffee cup for the 4th time that morning and take a quick peek in the mirror.
I didn’t even recognize myself. Bloodshot eyes with huge bags underneath.
My skin was pale. I see bruises on my upper arms. My roots are grown out not to mention greasy. I can’t shower when I am alone with my son.
He needs constant supervision.
I let myself go down the rabbit hole of feelings that accompany raising a child with severe autism.
The self-pity. The 'why me's'. The 'this isn't fairs.' The 'I can't do this for the rest of my life.'
Let’s be clear here…I love my son more than I can put into words. He is my life. He is my purpose. He is my joy.
But, his care is sometimes more stressful than I know how to handle. We are entering a new world. He is getting older. He is getting bigger. And I am still the same size.
Caring for an upset and inconsolable infant is one thing. Caring for an upset 60 pound 6 year old amidst of an autism meltdown is different.
I am not scared of Coop yet. But I can see a glimpse into the future. Little boys turn into teens that turn into men.
I have heard of caregiver burnout and if you search the term you will see a theme. The term refers typically to caregivers that care for adults.
Caring for my son with severe special needs is a 24 hour a day job.
I also work full time. And yes, you could say he is in school for 8 hours a day. Well, much of my day is spent making phone calls, replying to emails and doing the business side of autism.
On top of that I am sick all the time. I catch every bug that goes around. I never feel rested. I never have a break. Even if I go out with friends or take a break I feel out of place. Or guilty.
Do you ever feel that way?
Here is a list of signs of Caregiver Burnout for Parents. If you are experiencing any of these you need to try and take a break. Find respite care. Call a friend or a family member to help.
Caregiver burnout is dangerous for you and your family.
1. Your emotions are like a roller coaster. Daily you experience a wide variety of emotions. You feel furious one minute, sad and helpless the next.
2. You are always sick and rundown. You can’t figure out why you catch every bug that is going around.
3. You consistently cancel or don’t make plans with anyone. If you do go you feel out of place or can’t turn off the worries about your child. No one can care for them as good as you can.
4. You know you should have hobbies, but you just don’t have the time. Frankly at this point you don’t even know what you like anymore. You struggle to self-identify.
5. Even though you are married you’re the go-to caregiver. Always. Your spouse helps of course but the sole responsibility falls on you. You have no babysitters. You have no respite.
6. Your self-care has gone downhill drastically. You joke about not having time to go to the doctor or dentist. How could you fit it in…what would you do with your child during the appointment.
7. You struggle to sleep, relax, or rest. Your mind is constantly on the child you care for.