Autism Families And Self Care
November is considered National Family Caregivers Month. This is to honor the incredible hard work and dedication of all those who care for people with autism. And show the importance of Self-Care. Caring for loved ones on the spectrum can be challenging, and can also provide great joy and fulfillment.
We here in the Autism Diva household have had some amazing support with our new normal. The school has been exceptional. From Lil Man’s bus driver to his one-on-one ABA certified aide. I will be sharing more about our school experience but here is a hint of how wonderful they are. During a phone call to set up Lil Man’s IEP meeting, I mentioned how I was disheartened to hear about his aggression. The response literally made me tear up.
But that’s okay. He can communicate and that’s his only way he knows how to right now. That’s what we are going to help him with. To redirect and be able to better communicate. And he has so many positive strengths that we are going to build and focus on those.
To know that they understand my son’s needs and see how amazing or Autastic Lil Man is, just melts my heart.
In honor of National Family Caregivers Month, Autism Speaks asked their Instagram community what they want a caregiver in their life to know. These are some of their answers.
6 Things The Autism Community Wants Caregivers To Know
- That they are the strongest person I know and that I am SO proud of them!
- The small amount she helps with my son is so much bigger to me than she will ever realize.
- My family helps me and they support me because I am autistic.
- How much they have changed our lives in a positive way.
- Our community is very tight-knit and it’s great to learn from each other.
- That I’m very nice, I love to be myself, I have a good heart, I do good things and more.
Caring for the Caregiver: Respite Care
A respite caregiver is a person who takes over when the primary caregiver takes a break. These breaks can be an hour to even a week or more all depending on the needs of the family. Situations range from needing to go to the doctor for your own checkup, spending time with another child or family member, needing alone time, a date night or even to you just needing a break before you cross that breaking point.
While as a parent it can be hard to justify taking a break from your own child (trust me- I’m just as guilty) the truth is without a break you actually can do more damage than good. You risk your own health, relationships with others and even run the risk of resenting your child. That’s not helping anyone.
Occasionally having someone else take care of your child or loved one also helps them to develop stronger relationships with other people. This is something we have seen with Lil Man just by going to school and the different staff members he has come in contact with. He has really blossomed.
Friends and family are great options to help watch your child but sometimes they are not available. There are groups and even national organizations to assist you. Some may even be free! Start with The National Respite Network. They are a nonprofit dedicated to helping caregivers find competent, trained respite care.
My Own Personal Battle
Over the last few months, I have been heading down deeper and deeper into a black hole so to speak. Due to paperwork issues, my insurance was not active and I have not been able to see a doctor or continue my medications. This is a long story in itself but what I really want to share is some key points and what I’ve taken from this battle.
I have two main health issues that affect so much more than I realized and that is my depression, and not having a thyroid. Not having the medications for these had lead to many symptoms including some I never had before. The dark days with the depression have been so bad where I don’t even want to be awake. I just want to sleep because then my mind doesn’t think and then the anxiety doesn’t kick in. Vicious cycle! But of course I don’t want my daughter to be her brother’s caregiver so I force myself no matter how painful or miserable I may be and try not to cry in front of the kids.
Physically weak and even in pain.
I have been having issues with not just a lack of energy, but actually, weak to even stand. Everyday tasks such as walking up the stairs, doing dishes or bending over and picking stuff up will literally take my breath away. I’ve even had aches and pains come and go in different joints. Things that I kept brushing off but all come down to my thyroid levels remain way off. I am now looking at months before these conditions and more will improve.
And all of this came to a climax as I myself had to go to the ER. My husband was at work and it was just the kids and me when I started with sharp pains in my lower stomach. After 20 minutes of the pain not stopping and actually taking my breath away I called my Dr to be told to go in. My mom was able to drive me while my daughter stayed at the house with Lil Man. But the whole time I thought what if I’m admitted?
After many hours I was released with a new issue to deal with, Fibroids. But the experience had me give a hard look at my life and what I am and am not doing as I should.
Truth be told I don’t do anything for myself. I might do something with a friend every few months but true honest time for self or even my marriage…it’s a zero. The excuses are always there: have to care for Lil Man, the husband is working, we only have one car, the budget doesn’t allow for any extras. And while these are valid, if I really try and open up to other options, there are ways to change a few things.
Many who know me for years understand I’ve had lots of trust issues when it comes to my kids. Pulling my kids from school to homeschool was one of the results with issues such as the injuries my son was coming home with. You can read about that in Tough Choice Made But here in MA things really have been different. Not to mention DIVA is now older and able to help keep an eye on JR herself some. And knowing my parents are just down the road should she need someone gives me more piece of mind to trust her.
By allowing my kids to grow, this will allow myself to as well. I’m looking at different job opportunities that were not an option before. The husband and I can go out on a date for a few hours and know our kids will be safe. Even if we just go for a drink at a local restaurant or run an errand together without the kids, it will give us time as a couple.
Self-care doesn’t have to be a trip to the spa or a trip away (although those are wonderful too). It’s about taking some time to focus on your mental, emotional, and physical health. One thing I have started this week is sitting outside on our deck to drink my morning coffee. I wake early and with the warmer weather this is perfect to enjoy some sunshine, birds chirping and just relax my mind. Simple, easy, and free.