Putting Your Mask On First
I’ve been having some minor medical stuff going on. Nothing huge but still slightly concerning.
My fatigue and exhaustion were starting to affect my outlook on life and parenting so I broke down and went to the doctor. Of course it took me a while…like six months.
I have no time for medical appointments when my son has so many of his own. You get it. I feel guilt about missing work so often already and then adding in another appointment. It’s just a lot.
But like I said, my health has been wavering. So, I went in and my doctor was fantastic. She took the time to listen to me. She took the time to understand.
Are You Under Any Stress?
I explained my symptoms. Extreme fatigue. Exhaustion. Sadness at times. No, not depression. Just sadness. Anxiety. Trouble sleeping.
I told her when I get a simple cold I am sick for months. And I always get it way way worse than everyone around me.
I then told her I’m confused by all of this because I’m healthy. My diet is on point. I can’t physically eat any more green vegetables. I exercise. I drink water. I rest when I can.
Although, I haven’t slept through the night in six years.
She asked if I was under stress.
I half laughed and half cried. I told her about my beautiful, intense Autistic son and that my stress varies from a 5 to a 10. Never less.
I told her I am great at managing it though.
But…lately….It’s really catching up to me.
I told her about my son’s anxiety and rigidity. And how he is so demanding at times it makes me sick to my stomach.
I told her how his needs are severe. I told her how I always feel like I am walking on eggshells. But I immediately followed up with…He is the most amazing thing in the world. And he is.
It’s the truth.
She said….’Oh, my dear, no one is questioning the love you have for your child. It practically radiates from you. You can say this is hard. It’s OK. It doesn’t make you a bad mom.’
She asked if I had a support system. I said yes….they are amazing. But, that doesn’t help with the stress. There is no taking a break from my son’s disability.
She then commended me on handling this all so well. And then told me I have to find ways to alleviate my stress. Stress destroys a healthy body and can do serious damage. Stress is a silent killer.
Caregiver Burnout is a Real Thing
She told me about Caregiver Burnout. Google it. It’s a real thing.
And to anyone that wants to challenge me and say a parent can’t be a caregiver to their own child…I invite you to come spend the weekend. But be here by 3:45 am please so you don’t miss the good stuff.
She then said the dreaded phrase that makes me so frustrated…’Put on your mask on first. You can’t help your son if you aren’t healthy yourself.’
We’ve all had that said to us. Help yourself first because you are no good to anyone run down and exhausted. Of course I couldn’t agree more.
But…As a mother to a child with special needs that just isn’t possible. At least not always.
I went to bed early after my appointment only to wake up at 3 am this morning. I spent an hour tossing and turning and trying to figure out how the hell I could alleviate my stress.
Which in turn was stressful.
I started to think about that damn mask she was referring too. And how finding it and putting it on should be simple. Right? You need help. You ask for help. You get help.
Nope, not true. People outside the special needs world might think that. Those that live this life know the truth though. Everything is a struggle.
I’d love to put my mask on first people. I really, truly would. Nobody willingly wants to suffocate. Or drowned. Especially not a parent that feels the pressure to live forever to care for her disabled son.
But, that dang old mask is pretty illusive. Everyone says, get help. Like it’s easy.
Put Your Mask On First
Here’s a thought though. Consider this.
What if I can’t find the mask? I’ve heard about it. I’m quite certain I know a friend of a friend that’s used the mask. And everyone mentions the mask.
So, it must be a thing…right? But when I call to learn about it…no one knows what I am talking about. So, they transfer me around from department to department until I give up and leave a voicemail. I do this knowing my message won’t be returned.
I try again multiple times. I finally get through. I found the mask people!
But yet, more questions arise. The mask seems impossible to get. Or it’s not available in my area. Or they politely add me to the waiting list that has a 9 month wait.
What if that mask is buried so deep in a pile of paperwork and phone calls that it almost isn’t worth it. Of course it requires referrals and proof and not one but two evaluations.
What if you can’t keep missing work to do these things?
Or what if I am not low income enough to get a mask?
Or my son’s disability isn’t quite severe enough. But yet, it seems like they are dangling it right in front of me. And by now I know other people that are getting the mask and I know for a FACT that my kiddo has more needs.
And ironically, in every conversation about my son’s disability someone mentions the mask. People are always talking about it. Like it’s readily available. So, I get even more frustrated. What am I missing here. Apparently everyone has a mask. Why don’t I?
And what if once I do actually find the infamous secretive mask…I have to prove that I need it. Meaning initially and monthly, I have to explain until I am blue in the face why I need that mask.
I have to make my need for the mask so severe it starts to feel strange. It feels like I’m begging for it. Or dare I say fighting for it. What if keeping the mask is so much work I can’t do my actual job or mother as well as I should be? And what if the requirements to keep the mask area always changing.
What if using the mask means I can’t use other services then.
And then maybe, just maybe I get the mask only to feel guilty for using it. What if it seems like people are judging me for my mask?
I’ll tell you what happens more often then not. We give up. We give up to keep our sanity. We get so beaten down and exhausted trying to get help we just quit fighting for it. And then when someone mentions it again we just smile and say…’oh, yeah, that would be nice.’
When Getting Help Feels Impossible
Getting help is one of the most bizarre parts of having a child with special needs.
First, you have to admit you need help…which is hard. Then once you do admit it, you naively think help will be available. Only it’s not. Or at least you can’t seem to find it or maintain it.
So, what do we do to help alleviate the stress? How do we care for ourselves?
I can tell you what I did. I have some county resources. I’ve taken the ones that help our family the most. If it’s too much work to maintain I’ve given up. My sanity is worth more than the chaos sometimes.
I sleep every chance I get. I nap on the weekends. I try to eat healthy, drink water and take my dogs for walks. I try to be an adult sometimes. I try to unplug.
Now in saying all that, I need to do way more. I can tell that I am on a downward spiral. Therapy might be in my future. And a few more vacations. And most definitely hiring someone to help out with Cooper.
I cringe every time someone tells me I need to take a break and relax because it is never followed up with…’let me watch your kids.’
If the world wants special needs parents to put our masks on first…they need to make it easier. I’ve been searching for help for 4 years. And I’ve done it all blind.
By this point I’ve gotten used to being exhausted…the kind of exhausted that sleep doesn’t help. I think it just comes with the territory. I meet another Autism parent and they just get it. And for that, I am thankful.
Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.
Girl, I feel your pain. My son is also autistic and had colic when he was a baby. I know why people shake babies to death. I am not AT ALL saying that is okay, but I understand it. I have a great support system but if people do not have that I see how it happens. Stress is something we have to a different degree. You are strong, you are doing everything right for your son. That is what I find most comforting..not “take a break”.
So again..you are doing great and you are doing an amazing job with your son. I am just starting to follow your story but know you have a friend out here in this world, and I understand your fight. Hugs.
I get it, I totally feel you. I finally broke down last year & started using TalkSpace. I work with a licensed marital & family therapist online. This was the only way I could get help, God knows we are all usually too busy to make our own in person appointments! You are a wonderful Mom & so inspiring. I hope you are able to find respite & new ways to exercise self care. Big Hugs Kate.
I don’t have autistic children but I feel you. I have four girls. There is no “filling my cup” or putting on a mask. I don’t have a village just me…everyday.allday.
I get it too.
And I’m getting help.
My son has problems that only physical practice helps, so I’ve taught him to crawl,walk,run,jump,talk.
And now he can do all those things so it’s onto the next challenge.
For me,it’s time to help my grief because there’s been no time to do it for me yet.
Buts it’s hard.
Oh I hear you very loudly.
Have you asked Cooper’s para if she would be willing to watch him in your home? Even 1 Saturday a month would give you the chance to go out with your husband and be a real person for a bit! I used to happily babysit my students when I was still teaching because I could see how hard it is for their parents. (I taught kids with severe autism that we’re just like your cutie, but am now a full-time caregiver for my daughter who has a chronic illness.). Just a thought! I pray you are able to find, use and keep your mask!! ?
You’ve just described the difficulties of navigating the system perfectly. Just makes me sad that it’s the same battle in the US as it is in the U.K.
I reached caregiver burnout last year. I hear ya x
I am sorry that you know the frustration, love, anguish, anger, devotion… that I know. You have written feelings of my own into words here and I appreciate it so much. I’ve been working for that mask. Been told by doctors and therapists, family and friends that I need to reduce stress, get away for a bit, practice more self care, etc. One professional told me I needed to take a week at this lux spa she had been to…I never went back to her. She clearly hadn’t been listening, didn’t know me or my situation – no child care for the 3 special needs kids I have, not an extra dime to go to the movies much less a vacation – hotel, spa, whatever, for a week! I occasionally buy myself a delectable bar of chocolate, a magazine, read a good book – takes me weeks to get through one but I do it and feel accomplished. We have to make our own masks. Xxoo
From one burnt out Mama to another. I have become an expert mask getter. I have been doing this for 16 years and I could write the book for advocating for a special child. I am a tiger Mom…I don’t give up I don’t take No for an answer. How’s my special kiddo doing with her multitude of diagnosis’s and challenges… ??? Well…she can’t do anything by herself eat walk go bathroom bath brush her teeth, she can’t speak in sentences but she understands everything. She is so smart AND SO manipulative, she has tons of behavior’s many of the self injurious. She has the Mommy behavior’s down to a T. She is weak but she is sooo strong she is funny and oh so fussy…she is beautiful she is frustrating she is my shing star my inspiration every single damm day… she is thriving and moving towards her potential… but most of all she feels loved. I believe that is her greatest asset. People ask me how’s she doing … all the time… But they forget… all the time… to ask how I’m doing. So I’ll tell you. Not good. Not thriving. Exhausted. Don’t sleep… even if she does. I feel like shit in a hand basket. I’m 58. The stress has caught up with me. It’s caught me. I am suffering from caregiver burnout. Become an expert mask getter. Don’t take no for an answer don’t give up. Keep calling back. Make it sound as bad or worst then it is( and that is not a far stretch Mama!) But get that Mask. Your life may depend on it.
I am you…
I understand your struggle. I have been a mom since I was 19, so 19 years. I had my first 10 weeks early, he had early health problems and colic, was never happy, and it was pure hell for 4 months and then I was kicked out of my parents home and moved in with his Dads family. We got married- too young, but hey I didn’t think that then. My oldest son was about 2.5 when my middle son was born. Again, I had a preemie, and since they thought my first preemie was from stress and working on my feet, they didn’t try to prevent a second so he was born at 25 weeks. He spent 17 weeks in the hospital an hour away. Heart surgery, eye surgery, it was scary and hellish, but he came home healthy though they told me to expect issues later on. Well he did need glasses and is ADHD, OCD ODD and though not spectum, he has an IEP for LD and is emotional, nervous, and disorganized. Anyway. Their dad was too young and he did some things that just weren’t going to work for our marriage and I divorced him. After being on my own awhile , I got together with my now husband and we moved and married and though I was told I wouldbt be able to conceived due to scar tissue from my
Emergency c-section, I became pregnant when my older boys were 10 and 8. My surprise pregnancy was treated as high risk, I had a cerclage, 17p shots weekly, and given an anti contraction drug -oh, and I was put on full bedrest at 4 months and I had to quit work. I was given great care, they monitored me and my baby well- because I had a classical c-section i had to have a planned section before I labored and when I was 36.4 weeks I was having intense pulling so they did and amnio, his lungs were ready, so I delivered him, he was 6lbs 3 inches and breathing great. He had feeding issues right away. I requested they give him my pumped breast milk and soy, because they had to monitor him and detected that he got an infection from swallowing meconium and had reflux, so he stayed for 10 days before coming home. He developed just fine. His reflux cleared up and he was growing and eating; I fed him clean organic food. He began with colic at 4 months and would scream for 2 hours daily. Nothing stopped it. Always the same time. He continued growing and developing and he was able to eat things, began walking and talking. One day at 18 months he had an allergic reaction to a little peanut butter and off to the ER. He was diagnosed as having significant food allergies.
After that, and not long after a dr visit, he stopped eating many of his foods. He stopped talking, would be afraid of ceiling fans and all sorts of things I couldn’t see.
Luckily the pediatrician listened and got me into first steps. He got therapy in home and was diagnosed with PDD , SPD, and ASD preliminary.
He would only eat about 3 things so I had to give pediasure. Epipens everywhere. He couldn’t go to preschool when first steps started because he melted down and was non verbal and I didn’t like the way the staff handled him. I kept him home. I had him evaluated by our special education officials and he was offered a spot in the only school in our district that provided accommodations and services for special needs kids, and he was given and IEP. I worked with him with exposure therapy and nutritional therapy in tandem with school. He is in second grade, almost 8, and while he was only meeting 40% of this goals in kindergarten, he is at 90% now. His issues remain in social cues and impulse control. The worst part was that family
Is still in denial. They don’t know the work I’ve got through. They think I’m just too ” easy” on him. He was nonverbal and now he is nonstop verbal. Every milestone is a party with Austism. I haven’t been away from my son since he was 1 for one weekend my mom took him. I have not been on a dinner date with my husband for 5 years. We are just now able to bring him to restaurants and anywhere with minimal issues. He will still do mischievous things but doesn’t have fits or anything.
I went years with waking every hour. He would wake up screaming and ultimately he was taking hydroxazine for his excema ( another issue) and that helped. He was also given 1mg Melatonin and he finally slept through the night. He didn’t get poop trained till near 6, people just didn’t get why I wouldn’t do play groups or have people over.
I just got sick of explaining. I am still selective because I was bruised so bad. Maybe someday I’ll get a sitter… but I can tell you I did get a psychiatrist and got on an antidepressant because I already have EBV/CFS and fibromyalgia pains- so this antidepressant helped me get more energy and less pain. I also looked into adaptogens and have a script for Valium as needed. It’s worked well. I totally get what you go through. It truly is one day at a time and if I hadn’t been a veteran mom with two older kids one with ADHD, I would have been worse off, but often the kids do come out of themselves and become more self sufficient. Not always, but it’s worth the hope that there is something out there that will help them. Be it the right med, supplements, diet, and intensive therapies… and if he doesn’t, you will grow more patient and care so much less about other people. You will get mad and indignant before sad. You will empower yourself through this. You can find respite care sometimes via your doctors or through the schools. There are resources sometimes we don’t know are there. Every state is different, but utilize everything, research everything, don’t shrug off any suggestion. You do need help, and it’s ok to need it. If I lived close I would watch your son. I understand. Please seek options for yourself. Positive vibes to you and your son-reach out of you would like to talk.
You went straight into my broken heart with this video in the parking lot my dear. I also have a 21 years old son Chuck who weighs pretty close to 180lbs…he also sent me in major depression 7 years ago as i was too…working day shift as a production manager and nights helping Chuck with school stuff/homeworks. We did all we could with help of Autism Research Institute (biomed, hyperbaric, ABA, B12 shots…) but that switch in my wife’s and my mind…i can remember exactly when it occured ?.
I was stopped for 7 months and it’s been only 1 year since i decided i would no longer take antidepressants to stay on my feet…and yes it’s an everyday battle mentally. But you know what…the only thing i have with my son …is time to relief his anxiety to face all the situations he will have to face until he dies (once you’ll be long gone…and i know it hurts).
It is an every day job giving him the means one at a time…fortunately…he has one hell of a memory so he will remember when need be. Get help with antidepressants and sleeping antidepressants (i took Remeron for at least 5 years…that stuff sends you into beta waves kinda sleep every single nights) until you come back slowly to a more optimistic mood…the kind of mood you need to help your beautiful son so he can become as self sufficient as possible. You need to get your sleep fixed first …the rest will follow because believe me you are one great mom. Thanks for sharing your video…you are giving me hope.
(Claude, 53 father of Charles Meunier)
When I watched your video, I thought – My goodness, these are the thoughts that go round in my head too! I have twins both with autism although one is more severe than the other, but yes, I totally understand where you are coming from. Hold your head up high, you look like a wonderful Mum xx
I totally understand! I also can’t find the mask! I’m fairly certain I didn’t come with one lol. But let’s be honest here, my husband would tell you if I were to find the mask I would refuse to use it on myself and our son would be sitting there happy as could be watching train videos on his tablet with 2 masks!
Finding your blog was just exactly what I needed today in this moment. Thank you for sharing your story.
Lots of autism mom’s are on anti-depressants or in therapy to help them deal with the stresses. If you can get away to see a therapist, I think it could be really great for you!!!
(I meant that comment to be for Kate, sorry don’t know how this “reply” option works)
One line I would add if it were me, right after “no one follows up with let me watch your kids” is that it isn’t just that easy either if someone does offer. I have a small list of ppl that can “watch my kids” and its not me being over protective or a helicopter mom. It is hard! It is hard for me so I know it would be hard for someone else. My parents are amazing and keep my kids when I need them to but it drains them, and I see it drain them of that grandparent joy because it is hard and they don’t always understand or handle it the best. So I ask only when I absolutely have to… It isn’t simple to just hire someone, or get a sitter, etc. I struggle with who can handle it, and the guilt of needing someone else to…
Thanks as always for sharing and you are inspiring. I am a teacher of kiddos with special needs for 13 years and my own awesome kiddo is mildly on the spectrum with ADHD. Reading this, my first thought was exactly what you said toward the end of the blog. If at all possible you need to hire someone to help out with sweet Cooper. 🙂 This could be life changing for your family!
Kate…I wish we lived closer..I feel your pain..I was once where you are…I truly believe that you need to have someone come in at least a few days a week.. look at it like this you are not letting down your son or family..The Very Best Gift you can give to your family is to take care of their Mother…This can be done on a trial basis and you don’t have to share about it until it’s a success..and you don’t have to explain it to people who will not agree with your decision because it’s yours and Jamie’s to make for the health of everyone in the family….I will tell you how amazed Iwas when my son wouldn’t do certain tasks for me, but would do tasks for others, because they would have a different approach…Always my Best to you and your family Kate..???
YES!!! So often when I’m told that I need to take care of myself, the sarcastic side of me wants to respond with “Did you think it was your permission I was waiting for? ”
This. So much this. There are plenty of posts about the beauty of special needs children. And every one of them is true. But so is this: 12 years in to the special needs life and I have given up being human. I have fought, begged and pleaded for help. My son gets a nurse- for a few months before they decide that some bit of paperwork isn’t in order and then it’s a full court press to get it back for a few months while my and my daughter’s needs aren’t even considered while we keep my son alive. Special needs parents are all drowning in a system that treats us all like money grabbing criminals that need to justify ourselves to the nth degree every.single.month – as if our child’s severe brain damage isn’t permanent. Single Mom special needs parents are doubly under the gun. And it’s not just the parents. It’s the grandparents that are getting older by the year that are running themselves in to the ground trying to keep us from going under. We no longer exist – we are living ghosts that manage day to day while slowly failing in the long run.
And the ones that are often forgotten the most – the siblings. Trying to tell Mommy that you had a rough day at school? Too bad, your brother needs to go to the hospital. Want to learn how to drive? Sorry, you’ll have to do it with a brother in the back seat that screams every time you stop at a red light (no really, he does). Want to join that team? Mommy can’t juggle working late (because she spent all day fighting Medicaid) and getting you to your practices. And grandparents have already taken on all of your other transportation needs because I’m too busy to. And I didn’t have Owen until I was 36 so they are older than most grandparents. And you don’t have any other siblings to even commiserate with. You spend a lot of time just dealing with it on your own. And the cost to your mental health is incredible. More siblings than we are willing to admit are struggling in ways that most people cannot imagine.
Owen is a permanent toddler. That phase where they are mobile (he can crawl) but incapable of understanding what will hurt them. Always climbing on to the thing that will topple over. You babyproof the new thing he has discovered, only to find that he has figured out how to hurt himself with another thing. And he’s a 12 year old toddler with a 12 year old’s strength and about a 7 year old’s weight – throwing a tantrum like an 18 month old. He cannot talk and tell us what is wrong. We have to guess. Remember how tired you were when your kid was an infant/toddler? Now just imagine that exhaustion 12 years in.
We have become extremely good at keeping these kids alive. We have not figured out yet what to do with them while they live and how to allow the families of these children to also live.
We love our kids with all of our heart and soul, and we would die to save them on any given day. But we are still only human and we are tired of the fight.
Exactly. And, the need to justify why you are asking for help to everyone, the expectation that you can be “mom ” enough.
Hi darling please look up Trauma Release Exercises or TRE … These simple exercises can be done in 15 min a day. They activate the stress response that is trapped in the body. Stress does indeed kill. I will send a link.
Please watch this, it’s super important for your health
https://youtu.be/TQBUpMZajv8
The autistic characteristics are only a part of it. You still have all the same factors that are included in interactions between personalities…your husband, and you. Just because you have this and the feelings associated with it and the fatigue, does not lesson the great number of issues that every family faces. Did you ever think about what it means that you are the only female in this situation? Your feelings as you show them will gift you with your autistic sons concern and love, and take away the power struggles. I cant imagine the mask thing. I dont think thats right. He can see you cry. He can let you cry, He can be compassionate. You are real so he can be real too,,,,and helpful to mommy. Or am I outa the ballpark?