Fill up your cup

Contrary to what you might be thinking as you start this entry, it is not about pouring a glass of wine at the end of a hectic day…There is a lot of research out there about taking care of ourselves.  The first thought most people have is I don’t have time for the things I HAVE to do as it is, am I right?   Yeah, I live that life, too.  But I also know from personal experience as well as from working with parents of children with disabilities that it is as important for us if not more so than anything else we have to do in our day to day lives.

I have seen great parents crash and burn and I have also witnessed marriages and families crumble all because an adult didn’t put their own wellness first.  It is not selfish, it is smart and actually making you better, stronger and more effective.  Additionally, putting off taking care of yourself only makes getting back on sure footing more difficult.  Procrastination of self care is the worst form of procrastination…it affects not only you but everyone you love and everyone you come in contact with day to day.

The second reason you need to make yourself a priority is that it not only makes you physically tired to always be stressed but it is also mentally draining.  The type of tired that days and days of sleep doesn’t cure.  Who am I kidding??  I actually have never had days and days of sleep but I doubt that would cure it, but if that experiment ever comes along I’m volunteering to do the sleep study:)  Anyway, mental fatigue affects judgment. mood, and most of all relationships.

Good self care also provides our children with a good role model of why it is important to make yourself a priority, regardless of what others might think.  And self care will make it easier for you to identify what you need, when you need it and how to get it.  If you are in a good place, others will see it and want to know what your “secret” is and it really is kind of simple.  And well worth the effort for everyone!

It’s okay to be selfish…

I know, I know just reading the title of this entry is making some of you uncomfortable.  I get it.  We aren’t raised to put our needs first.  We have such a difficult time accepting the fact that we matter.  Life is about doing for others, making sure everyone else is okay and then maybe if the stars align and everyone falls asleep at a decent hour you might be able to have a moment of silence and calm…sound familiar?

The funny thing about care taking is that we, as caretakers, rarely think about keeping ourselves happy, healthy and renewed.  Yet the thought of driving your car on a road trip without a full tank of gas or having a dinner party without groceries in your house wouldn’t cross your mind.  You are a vessel through which hope, energy and potential flow.  If YOU are not energized, replenished and fulfilled the support that you give and the energy you expend can be exhausting and even harmful to your health.  You are no good to yourself or anyone else if you are not 100%.  Most of us run on 50% or less, just getting through each day or going through the motions.  Does this remind you on anyone?

The good news is that it doesn’t have to be like this.  YOU have control, even when it feels like you don’t.  There are little things and big things you can do to increase your self-care.  I will be examining a number of strategies of self-care in the coming entries but for now I encourage you to read this article on broad areas you might begin to look at in terms of taking care of yourself for the greater good

Real job isn’t 9-5…

Shout out to all the parents who work the swing shift!!  I know, you’re thinking what??  But, I never understood what the big deal was about not working the same shift week to week…there were times in my life when I thought I would have loved it.  And then I had a child.  A child whose needs and behaviors necessitated that we follow, or try to, her schedule. 
I often say my PAID job is my recreation because my REAL job starts when I get home.  I can’t be sick, tired, grumpy or really take a vacation (though I am trying to do the last one now that she is more independent).  Somedays it is the best job in the world and some days I want to run away and never come back.  How’s that for honesty?  I love my daughter but don’t always love my job associated with caring for her.  And that’s ok.  Really, it is.  It is also the reason we need to take such good care of ourselves physically, mentally and emotionally so that we can do our REAL jobs to the best of our abilities.  The next series of posts will be about self-care.  Hope you enjoy them!!

I never thought I’d do that

I love talking to new, first time parents.  It makes me smile.  They are so full of hope and dreams. both for their child and their family in general.  Oh how I remember that optimism.  Listening to everyone tell you how your little bundle of joy was so cute, so precious.  Thinking to yourself, well, of course, he/she is the most beautiful child ever…DUH!!  First time parents are so idealistic, positive about the future and, well, delusional in most cases.  Don’t get me wrong, I was one of them.  I get it.  I guess more clueless than delusional.

We all started out with THE LIST.  Things that other people did or didn’t do that we were NEVER, EVER going to repeat.  Whether it’s eating only organic, whole foods or cloth versus disposable diapers, we all had clearly defined, before the child is born, lines in the sand.  Some of these things were because it was the best choice for our family at the time, for example bottle versus breast feeding.  Some choices were because of horror stories we read or had been told about, think natural child birth versus medical intervention.  The only real line in the sand my husband and I had was the baby was never, ever sleeping with us.  Even as I type this, it makes me smile thinking how adamant we were.  It was non-negotiable.  And then our daughter was born.
This is an aside for all the moms out there…Motherhood does something to our brains, doesn’t it? And first time moms are a creature onto themselves, right? I remember thinking I had the power to will my child to do anything, after all we had this innate bond from spending the last 10 months together, literally. She would know what I needed and I would know how to meet her needs. HAHAHA!!! See, delusional. My daughter was so easy in the beginning, it just reinforced the belief that I had that we were so in sync. And then it began…
I truly believe that new parents don’t always notice the little things. Subtle changes that, while not important on their own, may be clues to a larger concern. But I also think there are so many things you just don’t know to look for and so many cool, exciting things happening that it truly isn’t anyone’s fault.  You just want to revel in all the new and adorable things your bundle of joy is doing.  Or your so exhausted you wouldn’t recognize trouble if it ran you over.

This brings me to the topic of sleep.  How you sleep once you have a baby in the house.  How you get your baby to sleep or you don’t.  and probably the most critical of all, what will you resort to to get one or both of them to happen.  The most important thing to remember through it all, in my opinion, is that someone will always, always tell you you’re wrong.  Once you accept that fact or better yet go into it knowing this, every decision and choice becomes less traumatic.

Now, I’m not going to advocate for any method over another.  I believe that each family needs to figure out what works for them, critics be damned.  You also need to at least be open to the fact that each child is going to have his or her own way of doing things, regardless of what all the wonderful parenting books tell you…the baby really is in charge to a certain point.  From a psychological standpoint, by “training” a baby to be on your schedule, you condition them not to trust their own body/needs.  Setting the stage for obesity, anxiety, depression and a myriad of physical ailments as well.  Yeah, we can screw them up that early.

As I have said before, my husband and I were adamant about “no baby in our bed”.  However, that was before RSV, sensory issues (which weren’t even a viable diagnosis where we lived) and having a child who did not sleep more than 2 hours every three nights.  Sleep deprivation really is torture and can lead you to take drastic measures.  Never say never…

Not before my coffee

There are few certainties in life when you have a child with any type of challenge. Physical, mental or developmental, it really doesn’t matter. You have to be able to be flexible, patient and often times think outside the box to solve problems never addressed in parenting books. To be able to do this effectively and efficiently, I have found I need a few basic things…
First, I need a minimum of 5 hours of semi-uninterrupted sleep. Parents who have children who don’t or can’t sleep know why I say semi-uninterrupted. Once you have a night owl, you get really good at tucking a child back in, changing a pull-up and, God forbid, throwing a child over your hip and into your bed (more on that later) without ever opening your eyes. Sleeping soundly with no interruptions became so foreign in my world that on the random night it did happen I generally woke up in a panic about 3 am and sprinted to my daughter’s room to make sure she was breathing. Then I was SO full of adrenaline the rest of the night was a wash.
The second thing I need is ten minutes to take a shower, alone. No door knocking, no whining, no flushing of the toilet. TEN MINUTES. Some days I get it, some days I don’t. My co-workers can tell the difference.
Third, and lastly, no deep conversations or questions before my first cup of coffee. Funny, my husband learned this rule faster than either of the others…go figure :-). My daughter, however, still struggles with this one because when she wants to know something or tell you what she just discovered, she wants to do it NOW, coffee be damned.
Yesterdays pre-coffee conversation started with the question, “Mom, did you know the Jewish religion comes from Israel?” Let me just say we are neither Jewish nor very religious in general, so no idea where this came from or where it was going…
I gave my usual, pre-coffee response, “uh-hmm”, enough to acknowledge but not asking for more. But there was more, there is always more. “Mom, Jewish people where these little hats on their heads when they go to services and the building is called a temple. Did you know that, Mom?”
Now, this is a slippery slope question, as all parents with perseverating children know. Of course I knew but if I said that, it would have started a lengthy discussion about the Jewish religion and heritage. I am very pro cultural awareness but NOT BEFORE MY FIRST CUP OF COFFEE!! So as I lied to my child, telling her I didn’t know that and poured that first cup of liquid gold, I also silently curse my school district for not having school year round!!
We have tried to encourage our daughter to look her questions up on the computer for two very specific reasons. First, generally what she asks is not an area of expertise for myself or my husband. Quite frankly the questions, although well thought out and clear, are not usually related to anything other than random thoughts in her head. We have been asked about what the hottest fire in the world has ever been, can people who die hear us and why does her favorite show have to have repeats in the summer, all in one day.

The second reason is that summer vacation is so difficult for all of us.  By focusing her thinking, energy and time on some cerebral task, much like school does, we help her ease her own anxiety.  The unintended consequence is that she expands her knowledge base on obscure, untypical teenage information and usually comes up with bigger, more complicated questions.

Next time I will get into co-sleeping, just don’t have the energy after realizing my kid is smarter than I was at her age…

Funny thing is…

People think having a child with a disability is a hardship.  Any disability, to varying degrees, will elicit sympathetic looks, a firm pat on the back or an unwarranted hug and probably my favorite, that little gasp, followed by an, “I’m so sorry.”  PULLEEEEZZZE!! Save your pity for parents who have lost their children in some tragic way, for the homeless and destitute or for whatever natural disaster is occurring.  But my family doesn’t want, or need, your pity.  We are blessed.  And in many ways we are blessed because of our child’s diagnosis and the wonderful things it has brought into our lives.

Now, don’t get me wrong.  Some days SUCK!!!  Some days I want to turn around five minutes after getting out of bed and crawl right back in and pull the covers over my head.  And sometimes there are weeks of those days all strung together.  Some days I do nothing but wish I had someone else’s life, anyone else.  Somedays I dream about walking out the door and never looking back.  Yeah there are BAD days…

But the funny thing is there are wonderful, compassionate people in our lives and now part of our family who we would  never have met if not for the dreaded diagnosis.  People who, when they offer to spend time with my child, I know they are doing it because they love her as much as I do and not because they feel sorry for her or our family.  People I can call at 3am to talk, people who I can share my family’s struggles with but who also share in our joy.  People who, years after being directly connected to my child, check in from time to time and sahr both their time and love.  Yeah, our life bites!  Bet you wish you had it…

Home again, home again…

My daughter always loved nursery rhymes.  Let me clarify that, my daughter loved nursery rhymes because they were catchy and she could perseverate on them.  At first, family and friends thought it was so cute when she would incessantly say the same word over and over.  Think record player stuck on a scratch, for those of you old enough to remember record players.  As new parents, not knowing anything about “normal” child behavior we would drag her out at get togethers and have her do her little act to the claps and laughter of all…Yeah, instead of singing bad words or dancing like most little kids, we were entertained by her undiagnosed ASD behaviors.  Bad mommy, bad, bad mommy.

Like most of you reading this I have had parenting moments I am not proud of because I consciously made a choice to act in an inappropriate way.  I am at a point in this journey where I have learned to separate what was a conscious choice and what we did to either survive or out of ignorance.  I try to work on the first set and let the guilt from the survival/ignorance choices go.  As parents, especially mothers, we get enough guilt from everyone else.  We don’t need to self-impose it.

Recently, in the last year or two, I have begun taking mommy breaks.  Granted my daughter is 15 and more independent now and perhaps that had a lot to do with it.  But it took a LONG time for ME to be okay with going away from my husband and child.  It also took a great deal of internal fortitude to not listen to all the haters who judged me as “selfish”, a “bad mom, wife, woman” for admitting I needed a break.  Contrary to what society promotes and culture reinforces, we are not meant to be superwomen (or supermen).  Periodic breaks to recenter, evaluate and recharge are not only important to be the best we can be, I believe they are essential for you to have a good relationship with yourself.  Who can love you if you can’t love yourself?

 

Reality gets in the way

Once again another sign that I am exactly like you, life got in the way of posting daily like I would like.  The struggle is real to find enough hours in each day and I am affected just as you are.  But rather than feel guilty about what I perceive a failure, I am consciously choosing to accept I continue to grow into this process and will take each day as it comes.  WHEW!!!  Just writing that makes me nervous.  What will people think if I am not superwoman?  How can I possibly be effective if I can’t reach the unrealistic bar I set for myself?  See, not so different.

Okay, since it has been a couple days, I have a few pieces of useful (I hope) information for you.  One of the biggest struggles I hear from parents of children on the spectrum, and I myself struggled with, is discipline.  Timeouts were the punishment of the day when my daughter was young and although they allowed me to get myself together when I was frustrated with her actions, they actually gave her exactly what she wanted isolation and not social demands.  So what could take the place of timeouts and taking away her electronics (I know, some of you just GASPED at the thought of doing something so cruel)?  Well, interestingly enough it’s exactly what WE, as adults, want when we are behaving badly…someone to listen.  There is research supporting schools can be more effective using it as well.  Now to convince them the extra time and energy is for the greater good…

Another interesting article I came across in the past few days talked about panic attacks, which if you start listening to your child’s concerns, you may start having yourself:)   Anyone who suffers from panic attacks knows that they can be debilitating.  Anyone who has never had a panic attack generally believe they are exaggerated, hysterical reactions to normal, everyday life.   You can’t explain them to someone who hasn’t had one any more than you could explain a heart attack to someone who hasn’t had one.  They are very individualized and can often be situation specific.  Ironically, it is something we can share and empathize with  our kids about.  Anxiety and ASD’s often times go hand in hand.

As I continue to navigate the waters in the ocean of Autism, I often tell people if I had one wish it would be to spend a day inside my daughter’s mind and body.  To understand better what it is like to live in her body, think about the world as she does and to be so utterly perplexed by everyday interactions.   I came across this letter written to parents from a girl with autism and although it failed to answer a lot of the BIG questions, it somehow gave me comfort,  It made me look back and smile at reactions I had, more towards others than my daughter, when she had had a meltdown in public.  Others still irritate me a lot more by their reaction, than her meltdowns ever do.  There are times when i don’t what to be the Autism educator.  There are times I just want to be a mom who would like people not to stare but maybe offer to help.  I want people to be more considerate and mindful.  I want a lot.

A Matter of Perspective

As with everything else in life, perspective can make a good day great and an awful day tolerable.  If you struggle with seeing the glass as half full or worse yet want smack those cheery people who get in your way throughout the day, I understand.  As much as I know that focusing on the positive can have a huge effect on yourself and others, it just isn’t realistic to always see the glass as half full.

Optimism is a double edged sword for many people.  If you try and be happy go lucky all the time, people can react in two ways.  One, they think you don’t have any problems and therefore don’t need any help, EVER.  Or they can become resentful because they think you have everything so easy.  Both situations can cause hard feelings and misunderstandings.  And does anyone ALWAYS have it all together…if so, sign me up.

That doesn’t mean you need to go to the other side of the scale and complain and whine about every injustice ever done to you.  This can also wear on people, even people who love and care about you.  The ideal is somewhere in the middle.  There will be days that you will feel on top of the world and other days when all you want to do is wallow and commiserate with a true friend.  Both of those are okay but generally you should be someplace in the middle.

We need to support each other but first we need to be support the person we are going to choose to be.

Breathe…

One of the struggles of raising a child, any child, is wanting things to go smoothly.  Obstacles and pitfalls can happen to others, you don’t have the time of the patience to deal with them, right?  I get it.  I know the feeling and working on this blog has reminded me of how little patience I have for things to get done already.  I have a million and one things I want to put on this blog…resources, articles and support items but there are just not enough hours in a day for me to get it all on here without thinking of five more things I should also add.  Multitasking is a said to be a waste because nothing gets done well, it just gets done.  That being said, anyone know where I can get about 4 more hours a day?  🙂  Want to know how cool you are??  Yeah, YOU, click the link in blue above and and read the truth you live every day…