One of the hardest things for me about being a mom is still making time to be a person. As we put a 1000% of our energy into our kids, we find that we start to lose some of ourselves. At first, it's a piece of identity or the things we used to like to do that get pushed to the back burner because there simply isn't time. Maybe before kids we painted, or read, or enjoyed sports, or had a fulfilling career. Raising littles as a stay at home mom doesn't allow for much of that, not right now anyways. So we say goodbye or put on hold some of those things and hope one day we will have time again to do some things just for us. Not only do most of us box in parts of our identity for a later date, but we also pretty much completely give up self-care. Hygiene slips, hair is usually pulled back, real clothes are shoved to the back of the closet and as long as we can keep going, we rarely see the doctor or make time for own physical and mental well-being.
As a mom to a child with autism this struggle is exponentially harder. Even after our kids are in school, there are typically multiple appointments a week for therapies and specialists. If we aren't in medical appointments with our kids, we are filling out paperwork for IEP meetings or insurance. Not only do we have to be master schedulers to try to find the time to make an appointment for ourselves, but autism parents have the additional stress of finding appropriate childcare. If we wanted to join a gym, few gym daycares would accept special needs kids. If we need to go to the dentist or the doctor (or the rare hair appointment), very few sitters are qualified and willing to watch a severely autistic child. And even if we find someone who is, handling the separation, the meltdown, and the fallout can often be daunting enough that we do not even try.
With all of these obstacles to taking care of yourself as a special needs parent, it seems easier to just let it go. And sadly that is what most of us do. We look around and have very little left of ourselves, our health is often deteriorating and many of us are on an emotional roller coaster daily, but keep going. And we keep going until something gives. For me (and many other autism moms I know), the wake up call came after finally getting to the routine doctor appointment and realizing that blood counts were off, blood pressure was high, and overall nutrition and health were plummeting. There is study after study showing that moms (I think most of the studies have looked at moms specifically, but I am sure it applies to parents across the board) of children with autism are more likely to have heart attacks and more likely to have serious health issues. Much of this is due to the stress, the physical strains of being a full time caregiver, the almost guaranteed lack of sleep, and the constant worry. Many of us also develop bad eating habits. We either don't eat at all due to lack of time, eat unhealthy due to convenience, or overeat due to stress. All in all we simply don't have enough time. Not enough time to get to the doctor regularly, not enough energy or time for physical activity, and not enough time to destress.
So I made a decision. I cannot let myself get so worn down that I cannot take care of my kids. I cannot let myself go to the point I end up in the hospital. I cannot sacrifice myself to meet their needs, because if I am gone I can't meet their needs. We have all heard that you cannot pour from an empty cup, so fill your cup first. I am the first to admit that that is so much easier said than done. There are still appointments for myself that I have not made and appointments I have not kept, but I am trying. I joined a gym and go during the small windows of time that all three of my kids are at school. I would rather nap, but find I actually have more energy if I exercise during those times. When my husband is home, as much as our son fights the separation from me, I go run or go to the grocery store alone. On the days when there is no chance of getting out, I force myself to do something for just me, whether it's putting on a Pilate's video or taking an hour to read. Sometimes that means they get more screen time. Sometimes it means the dishes don't get done. But I am slowly discovering that I will never be the best mom I can be if I give all of myself to them. Since this change I feel better about myself, I am stronger, I have more energy and overall I am a lot happier and more patient with them.
I know not everyone is in the same situation and not everyone has even the small bits of freedom that I now have since our son with autism has started full day school. And if you would have told me when my kids were 4, 3 and 1 to take some time for myself I would have shot daggers out of my eyes and told you to come babysit. But I guess I want to encourage all of you in the moments of downtime (however fleeting) that you do get, to choose yourself. Try to budget for a sitter every once in awhile, find someone who regularly works with special needs kids and work through the separation issues many of our kids have. Look into respite options offered through your state or your insurance and support organizations that are lobbying for more respite care access and services for families. When respite or a sitter is not an option, take the five minutes in the car between appointments and put on music you like and enjoy a cup of coffee. If you're married and your spouse is able, have them take the kids even if they have worked all day...you've worked all day too. Go for the run. Get the massage. Go out with the girls. Take a bubble bath. Let a few things around the house go for awhile and save your sanity. Know that any time you can make for yourself you are doing it for you, but you are doing it for them too.
What you posted makes sense. You got to take care of yourself first before you can care for your autistic child.ReplyDelete
Just saw the post where you closed comments shown as an example of the "empathy gap." I'm glad you realized you've been bamboozled, but that's not enough. Most mammals will act in the same way, like the lion who viciously kills the cubs of other males but fights to the death for his own. You've taken a big step forward but there's a long way to go. Please don't just become defensive but take this as an opportunity to reflect on your values and grow.ReplyDelete
It's unfortunate that the left is using this opportunity to crucify me (someone who has voted Republican at the state level, probably twice in my life) rather than seeing this article is written to specific demographic that needs to understand why they need to rethink voting Republican. It's not me who has been bamboozled. You all look like morons.Delete
If you think the left is "crucifying" you over this post, then perhaps that's simply another attitude you've got to get over. You may feel attacked when people criticize you, but please understand that a lot of people will see your attitude as highly self-centered. You really do appear to have realized the GOP is malicious ONLY because your family will now be directly affected. That is a great first step, but you've still got quite some distance to go. Saying you support "states' rights" for example - for decades that has meant denying minorities and LGBT folks equal treatment under the law. Perhaps you understood it as something else, but if you've voted for politicians who support states' rights, that's exactly what THEY meant. Sorry if this response feels like another attack, but I wish you and your son the best of luck.Delete
So I shut down comments on the other post because I don't have time to respond to every angry liberal in the world. I have voted for a Republican twice in my life and it was at the state level. Perhaps, rather than jumping all over this post you could see it as an opportunity to bring the insane number of people in the disability community still voting red into the fold? I guess not. I'm pretty sure this post has done more for your cause and has reached more on the other side of the aisle than any amount of jumping up and down and screaming the left has been doing for the last four years. I am very socially liberal and very empathetic. But there are a number of people who may not be and they need to see that their vote does affect THEM even if they don't care about anyone else. People are not going to agree with every part of every party's platform, but there are huge amount of voters in the the disability community that are still voting red and this post is written to identify with them. As far as states' rights go, I understand them completely. I have a Master's in political science and there are absolutely things that should be left to the states in my opinion, but any types of federal protections or civil protections should not be left to the states. Extending those protections is one of the most important things Obama did while in office. And I am kind of wondering if you read the article, because I make it clear I haven't voted for a Republican in years.Delete
Mandy, apologies for the task to which you have been taken for your post about not voting red anymore. I am happy that you are voting to help your family and others. I think maybe your post portrayed you as redder than you meant to judging by your later posts. At first blush you seemed to be saying "I've really been a staunch red voter but I just can't do it any more" and I don't think that is what you meant. Many of the replies were very mean spirited and I would only ask that you put it in the best light that liberals get so frustrated at conservatives voting against their own self interest that it can lead to being way off base. Having said all that, the thing I would ask you to consider to help your family is what would have reached you if you hadn't had an autistic child ? Because whatever that would have been, that is the message progressives need to get out there to help all. If you can think back to when you didn't have an autistic child and say "OK, what message would have convinced me that I should not vote red" - lifetime progressives have a hard time coming up with that because it seems straightforward to us. We need to reach people better - I think most people want to elect leaders who want to help people, but they keep getting frankly bamboozled by politicians who actually don't want to help people. If you can help, that would be wonderful.Delete
That's a great question, and I am probably not the best to answer because I have voted Democrat and independent quite a bit before having an autistic child, the last few years has just solidified it for me; regardless of the candidate or who else is in the running, a vote for the GOP is a vote against my kid. That being said, I don't think we can get away from our experiences and personal struggles shaping the way we vote. Voting on the local offices didn't matter to me as much until after I had kids in school. Education proposals weren't something I researched or put too much thought into before having school-aged children. We also constantly move and my residency is usually in red states, so it's hard to feel like my vote against red always matters. I don't think it's always a matter of red voters not caring, I think it's too often a matter of them not knowing. Although I have an autistic child now, I think my advocacy efforts and posts about how hard accessing services can be and how worried I am for others in our community that will lose access if the ACA is repealed have definitely changed the opinions of many of my friends and family without special needs children. I think instead of attacking each other we need to just keep putting personal stories out there about people that are impacted by education funding cuts, Medicaid cuts, and healthcare expenses. And as terrible as it is to say, progressives have to identify more with anyone they are trying to sway and that doesn't happen by saying "My God how could you ever be so stupid to vote Republican. How little you must care about anyone but yourself." It happens by showing them hard times can happen to anyone and that's why we should all care about everyone. It happens by perpetually breaking stereotypes about people who use food stamps or need WIC, show them the faces and tell them the stories. Many of these people aren't lazy or entitled. Life gets messy. It would also help to show them that even if they only want to make an economical bottom line decision it makes so much more sense to fund education, early intervention and preventative care...because that is LESS expensive in the long run. Just my two cents.Delete
Well then I apologize for what I misinterpreted, but I read it as coming from a position on the right. Maybe it's counterproductive, but when I'm seeing people I care about being harmed and finding swastikas in my classroom, it's hard not to react back. I see so many people spouting hate and dehumanizing others, even talking about violence towards groups in which I have friends, that I really can't see much goodness in people. From a founding values of America perspective, or even a decent human being perspective, it's hard to countenance how anyone could willingly acquiesce to, let alone vote for all of this. Half the country apparently wants me and my friends dead or kicked out. Again, I apologize for thinking you were one of them.Delete
Penguini, I don't think anyone in the groups you speak of is overreacting to be worried about the rise in hate crimes. The rhetoric from the election has emboldened a lot of people. And many of those issues have kept me from voting red long before having a disabled child. But at this point, I wouldn't consider voting GOP regardless of at what level and regardless of the candidate. I do think the way I titled the article probably had people assuming I have always voted red and then suddenly had a change of heart when my child got a diagnosis. But, it got everybody's attention, and I have had actually had people much more conservative than myself say, "Wow, we really do have to vote in our kid's best interest even if we are ______ "(fill in the blank- Christian, Prolife, etc.). So I feel like the article's accomplishing what I wanted it to, regardless of the liberal backlash.Delete
Yeah, I was definitely wrong. My reaction was totally rage along the lines of "why don't all these other people's lives matter?" Please don't think liberals as a group are naturally full of rage, although we have our bad apples too. It's just incredibly hard to even begin to understand how so many people can write off others, and or how what we thought was just basic humanity seem to have gone out the window. I hope you reach more people and best of luck!Delete
This was a great article, and I hope many parents of special needs children get to read it and take your advice!ReplyDelete