Sorry for the delay…

Life is crazy sometimes.  And just when we think we have it all figured out, somehow out of nowhere BAM!!  Change is kind of like that also.  In the last couple weeks I have changed jobs and have come to realize why my daughter likes predictability.  I’m doing something that I have dreamt of doing my entire life and yet the newness of it all is overwhelming.  I love it and it terrifies me all at the same time.  I hope to be back in full force within the week.  If nothing else it has been a very humbling experience.  Talk soon.

Words have meaning, except when they don’t

People are ignorant.  This used to make me angry.  Now it just frustrates me, most days.  People can also be mean, that makes me angry ALWAYS.  People who don’t know what they don’t know, can be educated.  People who choose to be mean, and by definition, stupid; they don’t deserve to even be acknowledged, in my opinion.  More on this rant another time…
It kills me that people who have the capacity to know better choose to not to.  Especially when I see my daughter struggle with what I see as simple concepts simply because she cannot grasp the distinction in some things. Case in point, this week we have discussed (again) the difference between boys that are friends and boyfriends. 
First, ugh.  Adolescence is tough enough for them and us as it is, add ASD and it becomes a nail biting, roller coaster for parents and an endless series of ever more intimate questions in a very matter of fact, monotone voice for the teens.  Did I say UGH?!
Second, so much has changed in the decades since I was 15.  An evening spent watching teeny bopper shows
with her has made this painfully apparent.   I am not even sure I KNOW the difference nowadays.  The boundaries are so blurred and she is so concrete in her thinking…One wrong answer could influence her behavior and therefore her interactions for a very long time.
So, I did what I thought would interest her and I told her to google it and tell me what she found out.  The answer was both enlightening and ever so scary…stay tuned 🙂

Love the life you live

Everyone is always wishing for more…more money, more time, more love.  With all this wishing we tend to lose touch with what we have and how these “gifts” nurture our soul and contribute to our day to day happiness.  If someone had told me what a blessing having a child with differing abilities would be when we received her diagnosis, I probably would have laughed in their face.  Yeah, sensory meltdowns, having to make meals around aversive foods that changed daily and had no rhyme nor reason that I could predict, having to “guess” what my non-verbal child wanted/needed and ending up with both of us in tears many days…Yay, me!!!

But after getting my footing and reading lot and lots of information,as well as sorting through the crap and pseudo-science, I realized that my daughter helped contribute to my overall wellness.  If she didn’t have the struggles that she does, I never would have focused on keeping myself well. I often joke that my real job is at home and my paid job is my recreation.  I have to be in tip top condition, even now because I never know when she night NEED me.  Not in the day to day, “Hey, mom, whatcha doing?” kind of way but in the really need me in a digging nails into your arm kind of way.  A parent of a special needs child always has to be ready for those times.

Take time for yourself, even five minutes at the beginning and end of each day.  Count your blessings.  Appreciate the people in your life, those you love for being there and those who get on your last nerve for showing you how strong you really are.  Kiss you child, even when they get to be teenagers and roll their eyes at you in protest.  If you have to wait until they’re sleeping and sneak in and get a kiss, do it.  Then stop and listen to them breathe.  It will feed your soul and remind you why you do the things you do, even when they don’t understand.  It will make a difference, I promise.

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…