What living with my son’s disability has taught me
While I am not disabled, I have been living with my son’s disability for the past 19 years. Because of that, my life trajectory has changed from what I once thought it would be. It’s both a good and bad thing.
When someone in your family experiences a disability, it affects everyone and everything. Things that you used to take for granted, you no longer do. Some things you used to do all the time, are not even on your radar anymore.
While these are all adjustments and it did take time to get there, I believe that the lessons learned, are valuable ones. Let me share 10 things that I have learned with you.
I have never been a patient person. I want to be up and doing, not waiting for someone or something. This has been the hardest lesson for me to learn. Just this week, I was on the phone with our genetics scheduler, setting up an appointment. The earliest they can see us, and that is virtually, is October. It is currently the middle of May!
While I really wanted to reach through the phone, because I have been trying to get a genetics appointment for about 2 months now, I politely asked when was the next available in-person appointment. January or February was the answer. “Glad I said virtual then,” was what I replied.
I have to keep reminding myself that patience is important and that honey catches more flies than vinegar, but it is hard. But is being patient so that my son gets the services that he needs worth it? Definitely! This is what living with my son’s disability has taught me.
Advocacy is a learned trait and for me, works hand in hand with #3, Speaking Up. For me, advocacy is about deciding for myself, what is right or wrong, what works, and what doesn’t work for our family. It’s about not blindly following someone’s recommendations without doing my own research. It’s about making sure that I am doing everything possible to make sure that my son gets to live his best life possible, at home with his family. Yes, he needs medical interventions but not at the cost of the quality of his life.
In the past couple of years, I have also been branching out in my advocacy efforts to other families that are in similar situations to ours and even to advocacy at the state levels in promoting policy changes that I believe would be beneficial to any family that experiences a disability
3. Speaking up
I am a very passive/passive-aggressive, inverted person by nature. Being firm, standing up for what is right, and occasionally getting in someone’s face does not come naturally to me. I will say that one advantage of getting older is that you really don’t care what someone else thinks of you. I can be very blunt and while I keep things calm and professional, if I am not happy with someone, especially a doctor, I am pretty sure my RBF (resting bitch face) can be seen through my mask.
4. Trust my instincts
As I have already mentioned, I have learned to not blindly accept someone’s recommendations without doing my own research, whether that is going online or talking to other families. I have also really learned to trust my own instincts when it comes to my son’s health.
I can’t tell you how many times I have taken him in to see his doctor and said, “I don’t know what is wrong with him but something is. Fix him!” 9/10, the doctor will find something; in his blood work or maybe in his ears. Thankfully, my son has a wonderful doctor who trusts my instincts, and if I say there is something wrong, there must be something going on.
5. To not blindingly trust doctors, therapists, or specialists
The biggest ‘a-ha’ moment I have had in my life was when I realized that doctors aren’t the god-like creatures with mystical powers that I thought they were. Doctors don’t have all the answers and you will find very few that will admit to that though.
If you aren’t getting the answers you seek, seek them elsewhere. Sometimes, it takes going through a long list of doctors to find the one that has the information you seek or is going to be the one who actually listens to and addresses your concerns.
I do not enjoy firing people, but after the year we had in 2021, I no longer have it in me to put up with people who aren’t going to be of benefit to us. I fired 2 neurologists and 4 pulmonologists before I found ones we could work with.
This is also where trusting my instincts comes in. This is what living with my son’s disability has taught me.
6. To not be afraid to argue (politely) with said professionals
If you do not blindly follow a doctor’s recommendation, you will probably have to politely argue with them about why you aren’t. As a passive introvert, I still am not very comfortable with this.
I keep my cool and firmly but politely state the facts or my concerns with their recommendations as I see them. If they are a good doctor, they are going to respect that I have enough concerns and intelligence to stand up for what I believe is right for my son.
I ask questions, I share concerns, I tell them when and what works for my son, and see if they are willing to accede to our wishes and concerns. If not, it might be time to find someone else. This is what living with my son’s disability has taught me.
7. To not be afraid of talking to a social worker
Social workers seem to come with a stigma. From my point of view, it seemed that if you were talking to a social worker, something was wrong with you and/or your family. You were poor, possibly homeless or maybe have mental health issues.
That is not the case at all. I have since learned that talking to your hospital’s social worker can really be helpful in terms of accessing services. We live 2 hours away from our hospital and if I ended up in the hospital with my son, the social worker helped me access a plan to help pay for my meals.
The social worker has referred me to the local Ronald McDonald House when we had outpatient procedures, with a scholarship to a medical conference and even with Christmas presents one year when my son had to be hospitalized for the month of December.
Don’t be afraid to reach out to your hospital’s social worker if your family needs support. They are a wealth of information and can help your family to connect to safety net programs. This is what living with my son’s disability has taught me.
8. To not be afraid to ask for accommodations when in the hospital
If your child ends up in the hospital, don’t be afraid to ask for things that are going to make the stay more comfortable for you. Even during COVID, I told (not asked) the hospital that I would be staying in my son’s room. I am his primary caregiver, not a visitor, as well as his legal guardian. I needed to be there to make sure that he got the level of care he needed and to make medical decisions for him.
If being there is going to be a hardship for your family, see what the hospital can do to help. I even had one hospital arrange to get us a food box for the family members at home!
If eating in the hospital and paying out of pocket is going to kill your budget, let them know. Sometimes, hospitals have plans in place for such circumstances and can help get you connected to them
9. Write things down! Brains don’t work well under stress
Take time at home to write down a list of all medications your child takes, a list of diagnoses, and a list of surgeries. Keep it in your emergency to-go bag (you do have one of those, don’t you? You NEED one!).
When you are tired from being up 2-3 days in a row and the adrenaline is pumping because of an emergency situation, your mind is going to be mush. Pull out your sheet of paper and just hand it to the nurse. It’s easier than trying to answer her questions. I have also taken a picture of the list to keep on my phone in case I lose the paper. This is what living with my son’s disability has taught me.
10. Take time to recharge yourself in some way.
Okay, okay, I really hate this one. I don’t know why but I really hate the term, self-care. My stance on it is if I had time for it, don’t you think I would do it?
But sometimes, we really have to remind ourselves to take time to do something that makes us feel human again. It could be something as simple as a hot shower, a cup of coffee outside of the hospital room, or a walk around the block while listening to music. It doesn’t have to be something as woo-woo as vinyasa yoga or transcendental meditation. Just do something for you that is grounding so you feel more in control of whatever the situation is.
This is what I am working on the most right now. My son and I suffered such trauma in 2021 from his hospitalizations that I am having a hard giving up my hypervigilance and hovering. In fact, I hardly ever even get out of the house to take a breath of fresh air. And I mean that literally.
Now that I am feeling more outside of the trauma, I am trying to make a conscious effort to go outside once a day and just breathe the air and listen to the trees and feel the sun. That is what I am capable of doing right now but I am going to keep pushing my boundaries to see if I can get back to my baseline me. This is what living with my son’s disability has taught me.
Your family is a ship, self-contained unto itself. You get to decide who you let onboard, into your inner circle. Doctors don’t live with our families, so while they understand symptoms and diagnosis, they aren’t in the thick of things like we are and understand how our family works. Be patient with them, they are trying their best.
But don’t be afraid to respectfully speak your mind and advocate for what you want and what works for your family. Trust your instincts, your gut very rarely leads you wrong. If your gut is not agreeing with your doctor, ask for time so that you can do your own research and maybe get a second opinion.
Reach out for help if you need it, from friends, family, or even social workers. Have someone you can bounce ideas and concerns off of.
Write down your concerns and questions and keep them with you so you don’t forget what they are when you are in an appointment.
Keep a list of all medications, surgeries, and diagnoses so you don’t have to try to remember those mundane details in the middle of a stressful situation.
And above all else, take care of yourself. You are on an airplane ride from hell and in the case of an emergency, put the oxygen mask on your face first so that you might be better able to help your child. If you are burnt out, you are a hindrance, not an advocate and your child desperately needs you to be their advocate. Be a gladiator and in fighting condition at all times, ready to take on all comers.
Need help with legal advocacy in Oregon? Check out Disability Rights Oregon!