Do you ever have one of those moments where you know something that happened was wrong but can’t make sense of it to try and justify the reasoning? This happened to me prior to this past holiday season and not only did it make me shut down, but it made me realize how far we’ve come as a society and how much work we have left all at the same time when it comes to mental health stigmas. I’m sharing this because if we don’t keep talking about it, we won’t change.
In late 2017, we were accepted for FSCD (Family Support for Children with Disabilities). I realized through the advice of a friend who had recently gone through the process, that I should definitely be applying for FSCD and that we’d likely qualify for certain supports. Prior to this, I had no idea what supports FSCD could offer even though it’s one of the number one things discussed on a special needs facebook page that I belong to. So I filled out all of the paper work, our application was accepted, and our home visit was scheduled. I was so nervous and didn’t know what to expect but I could not believe how amazing our designated worker was. She was kind, knew what I needed to say to get certain supports (so asked me questions in certain ways), and never made me feel like any question or request was unattainable or ridiculous. Basically when she left our home I felt as if a huge weight was lifted off of my shoulders.
One of the things that was requested and approved was respite care. Both, with limitations, for daytime and 24-hour care. I was personally a mess from lack of sleep on top of everything else that we go through on a regular basis. B was no different. My mental well-being was at the cusp of a meltdown: I needed respite. We aren’t without help or family support, however, the respite care was for more than a couple of hours of babysitting here and there. People are afraid to spend the night with B because at this time, there was a C-PAP machine to deal with and many people just can’t handle watching her episodes at night because it makes them so sad. We’ve even had people decline to allow their child(ren) to sleep over at our place and although they mean well, I know the real reason and it hurts. I also can’t help but worry for future friendships for B and experiences growing up that a “normal” person would have. I felt that a respite worker might be the best option with their medical experience and would allow my husband and I some sanity, even just once a month, on top of allowing me some sleep.
Naturally because I was so excited about being approved for respite options, I shared the news with people that I would consider close to me. You know what the general response was? You’d think it would have been how awesome it was that the supports were there and that I may gain some “normalcy” but it wasn’t. It was a variety of comments and advice about how I should be raising B, sleep training her, and using words, without directly saying it, to make me feel like an unfit mother. I no joke got text messages every single day for a week from some people asking if I was ok and making me feel like my children weren’t safe to be alone with me. After dealing with the same events and B’s medical team for years (probably 3 for pain and nighttime issues), people still think that I haven’t tried everything. The “well if she didn’t nap during the day, she’d probably sleep better at night” comments are one of those comments that if you tell it to a special needs parent they say (with a giant eye roll), “oh don’t even get me started!” Now, I’ve always been one who loves learning new things and is always open to suggestions, however, there is a line between making suggestions to help and to criticize.
So I shut down. I was stunned and constantly circulating through my mind was, “why?” Why was this the response that I had received? All I could come up with is how narrow-minded we still are as a society to self-care to prevent and treat mental illness issues. If a special needs mom gets criticized for requesting respite care to protect and nurture her mental health to be able to better care for her children, how can any “regular*” human being’s mental illness issues and struggles be accepted and treated with respect without stigma?
(*When I use the word “regular” it is not with the intention of downplaying anyone’s struggles with their mental health or suggesting that theirs is any less important. It is with the intention of differentiating the circumstances.)
I come from a family who has a history of serious depression and anxiety. When my son was born, three separate people came by to discuss postpartum depression and I answered the same every time- That my family has a history of depression and anxiety. That I have a history of it as well and I know exactly what it looks like for me. And to trust me that I would be the first to get help at any sign of it. In one way, I can thank my family history and their ability to get help for how aware and accepting I am today. I have no problem discussing mental health issues and am no stranger to them. This time, however, discussing it had made me feel so helpless and judged. It has become so apparent to me that we have so far to go as a society to accepting all walks of proper self-care. If you cannot put yourself in the shoes of someone else or empathize with their situation, then don’t, but in addition do not criticize their ways. No mother, parent, or human being should ever have to feel ashamed for reaching out or discussing real issues. There are how many posts out there about not judging a mom for formula feeding vs breastfeeding, among so many other areas of motherhood and parenthood, why am I being judged as a mother of a special needs child for requesting respite care?
I leave you with that thought.
I also want to leave you with the reminder that Bell’s Let’s Talk Day is coming up on January 31st. While maybe not the most perfect way to raise funds, it is a huge initiative to raise awareness, break that stigma, and help people get the help that they need. I participate every year and spread the word in memory of a sweet and dear past student of mine. To read more about her, you can read my post here.