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My Experience with Caregiver Burnout

My experience with Caregiver Burnout

One day I woke up and I needed a day to myself. I rarely ever called off sick for work but on this day I woke up and I just couldn’t bring myself to go to work. I was experiencing high levels of stress and anxiety and in that moment; I didn’t even realize it. Most people around me didn’t understand it; my fiance didn’t understand it; I didn’t even understand it. I later realized that what I was going through was caregiver burnout. If you feel burned out as a parent of a child with no special needs; many of us special needs parents are dealing with all of the regular issues that parents go through on the daily; in addition to the extra responsibilities/ stressors of a special needs child.

I could no longer handle the job that I had. I tried to call in sick and my boss asked me why because in her words she felt I could work from home. In that moment I knew that I no longer wanted to work for that company. I apologize to all of my former coworkers for basically ghosting them but in that chapter of my life I had to boil my responsibilities down to the lowest common denominator and that was my kids and my Autistic - Ausome Son.

What Caregiver Burnout Looks Like

Tiffany Haddish was recently interviewed and she told the interviewer - in regards to something totally unrelated - “...This is what is look like…” and this is what Caregiver Burnout looked like for me.

For me - Caregiver Burnout looked like not being able to cope with normal daily interactions that I was able to handle easily before. I couldn’t make certain phone calls, handle certain stressors, function in certain spaces. There was a stress indicator in my right arm I would feel this sensation that I can’t even explain almost like a thermometer rising that would let me know that this is not a situation that I want to deal with. Fortunately for me this stress didn’t affect my parenting at all; or my ability to take care of my household. I had moments of depression but nothing that truly stopped me from taking care of my kids.

So in addition to dealing with the high levels of stress and anxiety; I had my fiance call my job to explain what was going through but they wanted me to make the call. I remember not being able to make the call. The doctor that I was going to didn’t fully understand it she recommended that I see a therapist but the therapist could not write me a letter to protect my job - so I just quit. At that point in my life; I couldn’t see myself continuing to work and care for my baby and his needs.

I was coming home from work and dealing with eggs on the kitchen floor, poop on the walls(thank God we’re out of this phase now), high pitched screams; random high pitched screams, a baby who couldn’t sleep (Thank God for melatonin - now I know) so I was sleep deprived, a baby who was trying to escape the house. So at this point I was dealing with a high responsibility job and a stressful home life that I’m basically dealing with alone because their father is working the afternoon shift (3p - 11p). With where my son is on the spectrum and his hyperactivity levels we’re currently at a point where we have to monitor him as closely as we can 24/7 - again thank God he sleeps now because when he would sleep he would get into things and/or try to escape the house. I’ve woken up at 3, 4am to eggs on the floor more than I’d like.

As all of the things were happening in the above paragraph at first I didn’t know it was autism. I didn’t know what it was. At a certain point for parents of children with “normal” children you get a break - you get this point of relief where ok my baby is talking; my baby can go downstairs on their own and not get into the eggs or not break things; they can function a bit on their own there’s some relief. For some of us parents with children on the Autism Spectrum (depending on where they are on the spectrum) we don’t get that break. We don’t get that relief - it’s constant - “Where’s Jr?”. What is he doing? Is he ok? - Or is what he’s doing right now making sense - Is what he’s doing right now going to lead to something else broken. We;re at three broken TVs, one broken bed, multiple broken clothes baskets, multiple broken toys, multiple broken blinds. Some of the things he does are compulsive and can’t be disciplined away; just monitored to ensure it doesn’t become a compulsive habit or break something. At a certain point he was trying to escape through the window. He’s very smart. He watched someone open the window and figured out how to open the window. We had to remove the handles to the windows in the playroom so he couldn’t open them. He’s constantly thinking on his own agenda - very smart. He knows we’re on to him now so he doesn’t try to escape the house as much anymore I’ve added extra locks to our doors but talk about a high anxiety time in my life - worrying if my baby woke up before the rest of the house would he escape and be potentially dead or lost while I was at work.

And Then COVID - which brought on a whole new set of stressors at work, at home, my baby I had to take him out of school. He couldn’t handle virtual school and at that time no one wanted to risk their families health bringing ABA into the home. So everything came to a screeching halt with his progress and by the time for the new school year COVID was still as rampant as ever.

Another stressor that I totally forgot about until just now - Being an Autistic parent, and a natural introvert my natural instinct was to go into a form of hiding to protect my son from judgement. I remember the first time I overheard another child make fun of my son; it makes me cry even to this day. Even as I write this article thinking about it; I’m crying. This world is already cruel as it is; and to be different in a cruel world is so hard. I know I’m on a tangent - however I have to say this - my son is going to be a Black Man in America just like Elijah McClain. I don’t know where my son is going to wind up on the spectrum. But at this point in his life he can’t even communicate like Elijah McClain did but Elijah McClain had Autism and was killed by police for no reason.

Or Tamir Rice killed by police for playing with a Toy Gun so in addition to all of the normal Autism stressors and worries there’s this another uncontrollable factor that my family has to face as a black family in America. The fact that the police came to my house with guns drawn to check on me when my job was concerned about my whereabouts - why when I had just emailed them that I was ok - Guns drawn in a household with children.

Another stressor that happened during this trying timeframe I had forgotten about until now is seeing Philando Castile, and Alton Sterling lose their lives on facebook live. I had never seen someone lose their life and then to have it come on my timeline was extremely traumatizing for multiple reasons. Number one I’m sorry for their families; but every black family feels the loss not at all to the extent of the actual family but this could happen to any of us. Police brutality when it happens and yes I know it’s not all police but those bullets and that brutality only sees black skin and it could be any of us.

I feel like COVID was my straw that broke this camel’s back though. Even though quitting my job brought on a new set of stressors - financial issues, uncertainty of paying bills, relationship issues. I’m so much stronger now and now I know what Caregiver burnout is and what it looks like and how it will never affect me again.

Here are five ways I overcame caregiver burnout and not necessarily in this order:

(/Overcoming - It’s an everyday/ moment by moment in some cases process…)

  • I let Jesus take the wheel

  • I gave my problems, stress, anxiety to God. I laid it all at his feet and I began to trust him more. God says Do not Fear/ Do not worry 365 times in the bible so that means that in the 365 days in the year I should not fear or worry.

  • I stopped blaming myself for my son’s condition.

  • For a long time I blamed myself - maybe I did something. Maybe I didn’t feed him enough, Maybe I shouldn’t have let him get his vaccines. I blamed myself and I worried for the future. I have now learned I can only control what I can control - Perfectionism doesn’t work here. Planning and preparation doesn’t always work here - I have to stay on my toes and be ready for whatever life throws my way I can’t control it all. Sometimes with Autism 2 + 2 = 4 and sometimes it equals 5 and that’s ok.

  • I stopped letting the thought of someone judging my parenting or the actual judgements of others bother me.

  • I had been a people pleaser most of my life - trying to be the best, nicest, most considerate version of myself was me trying to constantly be perfect / a people pleaser (at that time I didn’t know this is what it was). Long story short this doesn’t work with Autism. Autism is quirky and different it doesn’t go in a straight line, it doesn’t meet societal standards and that’s ok. I had to become ok with it being ok and it’s been one of the best things that ever happened to me. No I no longer care what you think about me or my son or how I’m parenting him. I’m just over here living my life and trying to do the best that I can and that’s all I can do. All I can do is give the day my all and give my children and my son my all. And it’s ok that that’s ok.

  • I reached out to others for help / advice.

  • Being an Autistic parent, and a natural introvert my natural instinct was to go into a form of hiding to protect my son from judgement as I mentioned earlier. However the good news for me was I was just trying to become more social when Covid first started. Something within me told me that I just needed to get out as a Mom for my sanity. I had just joined a gym and was trying to reach out to people on Facebook that I could potential be friends with on Facebook - and once Covid -two- years- later- two long years later finally started to calm down I reached out to Pam and when we talked we realized we had a ton in common.

I knew I wanted to be friends with someone who had an Autistic child so they could understand when Jr stimmed and wouldn’t judge so I wouldn’t have to say “Oh that’s because of his Autism” a million times. It was nice to be friends with someone who just got it. Although I love all of my friends with Neurotypical children too.

  • Joining Autism communities online helped alot - knowing the quirky things I was dealing with were actually normal within our community helped.

  • Knowing that other parents were struggling with how to cope to helped me to realize that I was not alone but also that our community needs more help than what is currently being provided hence - Signed An Ausome Parent Non Profit :)

  • Finding a Mom Friend with a child with Autism has truly helped tremendously though. - I would highly recommend.

  • I pushed forward in the face of uncertainty and adversity.

  • I continued to take steps forward even though; I didn’t know where those steps would lead. And now here I am with my friend Pamela Primus (my new friend who I found again during this journey) starting a non profit that we are working to ensure helps improve the lives of Autistic Children everywhere.

If you feel like you’re dealing with Caregiver Burnout whether you’re an Ausome Mom, Awesome Mom or Special Needs Awesome Mom - here are some resources to help:

  1. Seek Therapy - Sometimes you just need someone to talk to - who will listen without a bias ear. Google free therapy in your state if monetary concerns are a factor.

  2. Seek a creative outlet - For me I love to write poetry, believe it or not coloring with my kids also helped. Going to Airtime (An indoor trampoline park) with my kids helped too - I’ve recently learned that I like being a big kid also a good outlet for the stress.

  3. Healthy is Wealth - I recently started (as in like 5 days ago) a health journey so I will be working out soon - I hear that also helps - Pray for me yall :)

  4. Self Love/ Self Care - We all know that sometimes when it comes to caring for our babies we put ourselves last. When you can and I know it can be hard - find even if for a moment - time to put yourself first.

  5. Find your village - Some of us are blessed to born into a village of love and support. Some of us have to create our village either way we all need outside support. I used to think I could do anything and everything alone and in my own strength. Autism has taught me that you need a community of love and support for sure.

Below are some links to help and links that I used as resources for this article.

Links to help with stress relief and caregiver burnout:

Advice from my favorite Ausome Mom - Pamela McClain :):

Remembering Elijah McClain - Always

I saw my son in this young man and it brings me to tears even as I write this article - what happened to this innocent young man. May he rest in peace and his memory be a testament as to why we need to continue to work on Police Kindness and Reform in our communities.

Remembering Tamir Rice

A young man just outside playing killed by police. Tragically sad just depressingly, tragically sad.

And even as I write this article the stress is still there; I’m watching my son right now.

He has energy for days, he’s jumping (which is fine) but then he wants to get a water bottle and put it in his mouth and spit it on the floor (which I of course can’t / won’t allow), or lean on the clothes basket and watch it crack and break, or he had crayons that he was trying to put in his mouth but I caught that before that happened so right now I just have him laying next to me so he doesn’t get into too much. He has to make some sort of sound about 99% of the day which I’ve gotten used to now so the stress is still there but I’m coping better.

I got a call from another ABA therapy place that doesn’t accept his current insurance but they sent me some referrals so we’re headed in the right direction. And the healthier and happier I am in the process the more I can be there for my son and my kids and my family. Without me and without me taking care of me - there is no me and where does that leave my son and family. So I have to take care of me and parents we have to take care of we / ourselves first for our children - As my friend Pam says even on the plane they tell us to put our breathing mask on first so that we can ensure we survive. They have to remind us of that for a reason.

So take care of you fam!

- Jennifer Owens aka Ausome Mom - Signed an Ausome Parent

If you are inspired by this article or our mission - donate to our mission to C.A.R.E. for Autism Families across the globe.

GoFundMe - Signed, An Ausome Parent

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