Caring for a child with severe autism is so much more than being a parent. For some, it’s an up all night, battle after battle, heavy life journey.
I have 3 children. Jaiden, my middle child, is loving, affectionate, funny and was diagnosed with epilepsy at 8 months, autism at age 2 and an intellectual disability by age 4. He is now 14 and his behaviors are on the severe end meaning he is nonverbal, with severe sensory issues, and a slew of other issues. This includes toileting.
There are days where I feel less like a mother and more like a caregiver.
I have entered a battlefield with my special needs son.
I used to take him to school. And by that, I mean, a behavioral center where I physically would hand over his flailing, kicking, screaming body to the technician. It got to the point where I was not able to take him anymore due to him having severe aggression and violent outbursts. I had my husband Kevin take him to school one day and he came back like he had just gone through an intense battle. I thought to myself this is what I look like when I come home? OMG.
I sweat, I feel pain from bruises, scratches. The bite marks are visible on my hand. My face is swollen, my head hurts, face hurts from a swift bonk to my face. My back, painful daily and destroyed. Most days I feel disheveled and unsettled like I’ve gone through the fight of my life.
The second I would leave the parking lot of Jaidens school I would burst into tears. I was able to hold them back long enough to let go in my car. I would put on a sermon, cry out to God and worship on my way home. I did this every single morning for years until I couldn’t any longer physically do it.
I will say things to myself like “Jai needs to see me smile. He needs to know that I’m here for him no matter what, he needs a good school, and he needs to know that I’m fine.” Except, just like the days before, I am not fine. I am hurt and exhausted like many other parents with severe special needs children. I am exhausted, anxious, crying and I feel terrible.
I refill my coffee cup for the 3rd time that school morning and don’t even feel like myself. I see bruises, scratches on my forearms. My hair is greasy as I don’t have the energy to wash it. Jaiden needs constant supervision.
I want to be super clear here. I love my Jai more than I can put into words. However, taking care of him is sometimes more stressful than I know how to handle. He is bigger, getting older and I feel I’m shrinking even though I am still the same size. Taking care of Jaiden at 12 months is different from caring for Jaiden at 205 pounds having a severe meltdown. It’s entirely different.
I have seen two out of the three of my boys go from little boys that turned into teens that are turning into young men. Again, with Jaiden it’s entirely different.
Caring for Jaiden is a 24 hour a day job.
I used to work full time. And yes, Jai was in school 8 hours a day. Nowadays, I home educate, take care of the household, write, podcast and worship at our church. I am sick more often than I’ve ever been. I can’t remember the last time I felt rested. When we have time to go out with friends or take a break I feel like I don’t belong. “Am I the only one that feels this way?” I say to myself. Then I take a deep breath and know I’m most definitely NOT the only one who feels this way,
Burnout is a dangerous place to be.
As I write this, I am hurting physically from the wounds I’ve obtained from last nights battle. I also hurt mentally and emotionally along with my kids and husband. I’ve tapped out. Ding, ding, ding! I literally feel like I’ve stepped outside my body and I’m outside looking in. I swore I saw a ghost of Jaiden last night before bed. I cried, I took some sleep meds to help me fall asleep. I have reached a point and I’ve gone bat crap crazy. I wish I had helpful advice today. I only have a few things to mention to you if your experiencing burnout:
1. Your emotions are ALL over the place. You feel irritable one minute, sad and anxious the next. Depression sets in depending on what just happened with your child and it changes from minute to minute.
2. Your immune system doesn’t function properly. You get sick frequently and feel awful most days.
3. You love doing things and having hobbies, but you just don’t have the energy to engage in them. So you don’t do them anymore and at this point you don’t even know what you like to do anymore. So you sit, cry, drink coffee and watch Netflix or Hulu.
4. You struggle to sleep and relax. Your mind is ruminating on what to do for your child, how they will be, how do the feel, are you missing anything?
I’m sitting here in a place where I’m lost. I’ve been stressed and always finding things, doing things to stress less. This time…I will sit here in quiet and maybe rest a little.
“You, Lord, are my shepherd. I will never be in need. You let me rest in fields of green grass. You lead me to streams of peaceful water, and you refresh my life. You are true to your name, and you lead me along the right paths.”
Psalms 23:1-3 CEV
Listening to: Mercy Me Even If
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Autism Stress Less Guide Booklet: https://www.amazon.com/dp/B08NTZ4XW9/ref=cm_sw_r_cp_awdb_t1_m18TFb7282ZSV
“Learning to suffer well is the key”