Thursday, January 23, 2014

Going out of business sale

Drastic reductions!!!  Everything must go!!  

After 5 years of  oversharing blogging, I have decided that Danale's Ramblings should be no more.

I didn't come to this decision lightly.  I've loved blogging here, it's where everything started for me and blogging.  I've learned so much about writing (I want to hurl if I read my earlier posts), about autism, about my daughter and about me.  This blog has gotten me a spot at The Times of Israel and Kveller.

It's been great.

But, as someone once said, all good things must come to an end.

It's taken a lot of time and soul searching, but with very mixed feelings, I've decided it's time for this good thing to end.  My daughter is no longer a small girl of 5, but she's now 10 and growing at the speed of light.  I owe her a little more privacy than I can give her here.

So, a good thing must end, but a new and hopefully even better thing will soon be beginning.

I am working on a new blog site which will be ready soon.  If you like the Danale's Ramblings Facebook page or you DM me here or on FB, I'll make sure you get a link to the new site just as soon as it's ready.


I will leave the site up for a while, until I decide how to archive it at the new blog, but I will eventually be closing up shop over here.

To anyone and everyone who has ever landed on this page, I thank you from the bottom of my heart for taking the time to read my posts, I truly appreciate every single page view.  To all the friends and family who have supported and encouraged me and to all the other friends who I've met through this blogging experience, who I have yet to meet in person, but many of whom I feel like I've known forever.  Thank you, thank you, thank you.

Over and out.


Wednesday, December 25, 2013

Women of the World, Man Up!


Over the weekend I had a parenting crisis.  No one physically hurt or anything,  but it was just one of those situations you run into with autism where you just can't figure out a way to help your child and you just have to sit there and take it.

Luckily the situation didn't last too long.  In the thick of it though I turned to Facebook and just like that, I had a bunch of friends throwing me love, support, encouragement.  And even though we didn't come up with the answer to the problem, things eventually calmed down, but it just felt so friggin' good to have people care.

This is what I love about social media.

I also got a few private messages from other friends today about it, inquiring if everything was okay and reassuring me that I am out there, trying to understand her and support her through whatever has or will come.  Those kinds of messages mean the world to me, not just because, like anyone, I like compliments, but parenting a special needs kid can sometimes be a very lonely business.  You see your friends kids, healthy, achieving, developing and growing in ways where with your own child all those things are at best, a big question mark, at your darkest times, they are the never-wills.

The Internet is literally ablaze with mommy bloggers and lately I have been reading a lot of blog posts about how we have to stop judging and we have to support other mother's and their choices.  You see these kinds of posts about special needs, about nutrition, about parenting philosophies, about problems, about everything.

Loads and loads of people are saying the same thing in a variety of different ways.  Stop judging another's choices.

What I see (and do) in practice though often falls short of that.  Sometimes it's the very same people who are writing beautiful pieces about supporting other women's choices and then later, lambasting others whose choices they don't agree with.

It would be easy to think social media is the culprit in this, but honestly it's not.  Social media may provide us the means to do this on a wide scale, but it is not the culprit.

It's us, it's women.  It's because we're largely insecure and we question our choices too much and don't feel they are validated unless others agree with us too.

Motherhood (and just about everything else) on social media has just largely become one large Homecoming Queen Campaign.

Our individual circumstances and backgrounds may vary but by and large, we are women, we may care about different things but we all long for acceptance and while we may try to play it cool, or needy or snarky or whatever the individual's particular game is, we fear not getting it.  Whole hosts of people are trying for this acceptance through blogging and social media  through exalting themselves with fruity posts meant to make them seem like whatever-it-is-they-want-to-seem.

But none of us, including myself are above a little hypocrisy and mean-girling.  You get loads of support if you are doing what others agree with, but skewered if you don't.  Why aren't we secure enough as women and mothers to validate our own choices, rather than needing others to validate them?  Why aren't we confident enough to understand that when someone doesn't agree with us, it doesn't mean that our choices are wrong, it actually doesn't mean jack sh*t.

We form opinions based on our own particular set of circumstances, whatever they are, why can we not just take for granted that someone else's other choice might be based on a different set of circumstances?  Why do we need 50 likes to feel good about our choices?  Why can't we read a mother's different choice and see her maybe 500 likes and not feel defensive about our choice?

It's not other mothers we need to be kinder and more understanding toward, it's ourselves.

We need to forgive ourselves for our mistakes, and we need , we need to make choices guided by what is best for our own circumstances and understand that is the basis of what is the right choice, rather than the opinion of voices from outside who may be influenced by a gazillion things and most of all,  if someone makes a different choice than us, there is no need to defend ourselves.

Parenting is the hardest and the best job in the world.  Nothing else in life gives you the breadth and depth of feeling,  both the joys and the sorrows.  Some days are fabulous and some days suck out loud.  We all make great choices and we all make mistakes, hopefully we learn and grow a little on the way.  We like to think we are all so unique, but we really aren't.

The game is not about others,  if we truly want to be supportive of other mothers we must first ease up on ourselves.





Monday, December 16, 2013

Facebook Math

Best Mother's Day Present EVE
Before I get started on this post, I just have to mention that although I sometimes slip and use British spelling (because living over here across the pond, they all use stupid Queen's English), one British-y thing I will never do (besides enjoy drinking tea), is say Maths.

OK, that's two British-y things I will never do.  I can probably think of a lot more, but that is a post for another day.

So, now that I have gotten that out of the way, I can stop pontificating on the Brits and move onto what I want to talk about.

Ready?

Facebook has been hounding me to look at my Year in Review.  This is where they make an overview of your 20 most popular posts throughout the year and put them in one little place so that you can cry like a baby walk down memory lane.

I found mine to be rather fascinating:

1.  Maya on a playdate with a friend.
2.  Maya toughing it out during Purim with the noise and the crowds.
3.  Maya's class picture.
4.  Maya writing.
5.  Happy anniversary to Leo.
6.  Anniversary of D-Day and remembering that event and it's significance for my family (we wouldn't be here without it, duh).
7. The State of Israel's Righteous Among the Nations Award being bestowed on the family that saved my Father in law during the war.  Read more about that here.
8.  Cute photo of Maya.
9.  Maya dealing with grief in her own special way, and her own beautiful way of processing emotions.
10.  Maya and her little tradition of giving me something of hers to take with me when I travel.
11.  Another cute photo
12.  The requisite birthday post (complete with baby photo) on Maya's birthday. We all like to think we are so unique, but guess what?  We're not.
13.  Maya cueing us in on that she knows how to spell.
14.  More cute photos (note to self:  next year, not so many photos, yeah, right).
15.  Maya and her hedgehog obsession.
16.  Another photo (f*ck, enough already)
17.  Cute Maya post about how she processes life and emotions.
18.  Catching Maya reading aloud (probably my highlight of the year).
19.  Some lame-ass post about going on vacation.
20.  Maya and going to Happy2Move and how much she loves having an extracurricular.

So, what does this tell us?

Well, some would say that I post about my kid too much (A.  Your problem.  B.  If you don't want to hear about my kid, why the hell are you reading my blog anyhow?).

Along with all the debates in the autistic community that are raging, one that I have taken notice of lately is the one over whether autism is something to be celebrated or something to be rid of and cured.  As I have said all along on all these debates, your point of view on these issues is related directly to where you (or your loved one) is with autism.  I totally get both views.

Yes, we definitely have our struggles and Maya is getting older, despite her doing well, her differences are becoming more pronounced in her peer community and less able to wave away with the cute-little-kid explanations than they were a few years ago.  We are entering adolescence (sh*t, we're here, who am I kidding), certain things are getting harder.  The fantasy of Maya "catching up" and ending up with a Math Degree from Harvard (or just being able to do long division) is being pushed ever more into the whatchu talkin' 'bout Willis category more than ever.

Still, a year ago, Maya's being able to read was still big fat question mark.  She couldn't write her name.  This year on Mother's day for the very first time, she gave me a handwritten card along with her home made present.  I have no idea what the hell the gift even was, but that little note is on my nightstand and I look at it every day.

My girl IS learning.  It may be at a microscopic snail's pace, but it is happening.  She understands more and her emotional intelligence continues to amaze everyone around her.  She's kind, she's sweet and she thinks well of herself.  At her age, I could recite multiplication tables and was reading novels, but I didn't understand half of what she does about the human heart.

It's been a great year.


Friday, November 29, 2013

Calling all Au Pairs

At least in the Netherlands.

We have had au pairs living with us for the last six years.  It was a choice that we made just before Maya was diagnosed with autism, figuring it was better for her to come home after school rather than have to adjust and cope in an after school program, once Maya was diagnosed we knew that an after school daycare for special needs kids was not really something that existed.  

It's been a win-win for us.  And before you think we are just spoiled, upper class people who don't want to raise our kids, we aren't.  We are quite atypical from most families that have au pairs.  While we are comfortable financially and have a nice house, we live in a very average home, in a neighborhood with people who are school teachers, electricians, secretaries auto mechanics and the like.  We definitely do not live among the country club set, no CEOs, Diplomats, Ponzi Schemers or Hedge Fund Managers over here.  We definitely have to think about where and how we spend our money.  We go without certain things in order to have an au pair.  We take less vacations than your average European family and we also gave up having a second car.  So, we are not just some rich family in a Range Rover talking about how hard it is to find good help.  

This is a conscious choice we have made for our family.  We gladly made and continue to make that choice for our girl, because having an au pair is better for her development, it's more comfortable with us and fits better into our lifestyle, helps reduce the inevitable stresses from raising a special needs child and most importantly, our daughter, as an only child, it gives her at least a taste of the experience of having an older sibling to be with, live with, pal around with and form a bond with.   

We've adjusted pretty easily to having someone living with us (which is the number one question I get from people about having an au pair) and now it just feels normal to have another member of our family.  

There are certain adjustments you need to make as a family with live in help.  There is the whole thing that you have to adjust to someone actually living in your house and who has different ways of doing things than you do.  You also have to accept that there will always be things that you feel they don't do as well or as thoroughly as you, because that is just the reality of having household help.  It's the overall package which is important rather than any individual task.  The fact that you have someone taking your children under their wing and helping you with the day to day of childcare, of taking the children to where they need to go and  helping you keep house counts for a lot.   I always love coming home from work each day and having my living room and kitchen cleaned up and tidy, our beds made and things more or less put away.  Believe me, it would not look that way if the system were dependent on me.

We've had 4 au pairs over the years and will likely have a few more.  Leo and I have decided to continue with an au pair at least until Maya finishes primary school and then based on where she is with her development and what her life looks like then, we will decide if we will continue.  

We've loved our au pairs, they have all been very kind people, although with very different personalities and Maya has adored each one of them.  Of course, like anyone, you like some traits better in one person than another and vice versa.  We've been very lucky, because despite whatever personality ups and downs there have been, every single one of our au pairs has been kind and caring people, who've loved our girl and have done their best to do things the way we Leo I like.

Not that our au pairs over the years haven't done things that have irritated us from time to time or had certain habits in the way they did things that we would have preferred were handled in a different way but that is always going to be true when you have relationships with people.  If you keep a scorecard, you are going to get less out of the relationship.  If you build trust and accept that one another are not perfect, you can find your way.  We, like any other family have certain deal breakers and I stress the importance of those and mostly for the rest, I let it go, as I am certain there are certain things we (mostly I) do which annoy them from time to time and they let that go as well.  Give and take.  

Au pairs that come from a foreign country often become friends with other au pairs, and you know what that means.  They compare their host families.  So, we've had a lot of au pairs come in and out of our house and I have heard a lot of stories about host families.  Many are just funny stories, but we have heard more than our fair share of truly shocking things, things that really show a lack of compassion, responsibility and downright abuse.  

 The Netherlands has very strict rules regarding au pairs, partially because there were so many cases of reported abuse by host families that our immigration authorities just got a whole lot stricter.  Even with those rules in place, however, it seems like a lot of families don't follow those rules and take advantage of their au pair's youth and naiveté.  Au pairs eager to please and make a good impression, have a good experience are often reluctant to question the orders of their host families.  

Still, the things I see are often in flagrant violation of the rules and in my view, common decency.  An au pair is not a job in the classic sense, the au pair doesn't get a salary, he/she gets room/board and a small stipend each month.  It's supposed to be a cultural exchange and you are supposed to treat the au pair as if they were an older sibling to your own children.  That's not to say that it's not right to give them responsibilities and require nothing, but you really should play fair.  These people are caring for your children, however you treat them will be reflected back to you in how the au pair cares for your own kids.

These are just some of the things I have seen/heard about over the years:

-Not giving the au pair their own room but making them sleep in a public room, like the dining room, without any privacy.   One au pair told me that her room is detached from the rest of the house and doesn't have its own bathroom and the family has said she is not allowed to come into the house when they are there, even to use the bathroom.  They've given her three buckets and toilet paper to keep in her room.  Ummm, guess what, it's not a barnyard animal you're keeping, it's a human being.  How the f*ck would you like to pee in a bucket?  (the rule is that the au pair needs their own room (and their own bathroom if possible)).  

-Making the au pair work 6 or 7 days per week (5 is the max)

-Giving the au pair the responsibility for all the shopping, cooking, cleaning and total care of the children (totally not allowed, the immigration authorities are very specific about what you can and cannot ask from an au pair in order to make sure that the responsibility stays with the parents, down to the fact that you can ask them to vacuum but you can't ask them to clean your stove or oven).
  
-Routinely expecting the au pair to watch the children 10-12 hours per day or more (8 hours per day is the max)

-Not giving the au pair any weekends off (they must have at least one per month)

-Calling the au pairs on their day off and expecting them to return home to work (not allowed, days off must be scheduled, you can change the schedule, but that should be done in consultation with the au pair and certainly NOT once the day off has begun).

-Not providing meals on the au pair's day off (full room and board is the agreement)

-Making the au pair do the family's entire laundry including ironing (kids laundry only)

-Making the au pair taking care of all night feedings for a newborn baby (not strictly against the rules but probably not very ethical unless the au pair's night hours are factored into the hours she is allowed to work (which means for a newborn probably a pretty light day schedule), and this particular au pair gets up in the night and then takes the older children to school and picks them up.  Not sure what the schedule is there, but this person is supposed to help the parents, not raise the sodding children.  

While it is the host family's obligation to ensure that they follow the rules, both the official rules but also the rules of common decency, I find it hard to believe that many au pairs feel like anything other than a servant.  Still an au pair has to know their rights.  Many host families think that because they are supporting the au pair financially they can ask anything and everything and like I said, they often take advantage of the au pair's naiveté.  Au pairs should know their rights.  Certainly there is room for flexibility, so if you for instance like doing laundry, and you agree, sure, go ahead but to me the problem is where a host family just expects, expects and expects and gives no flexibility or leeway of their own.  In some capacity by not understanding the rules and gently raising questions on these things, they confirm to their host families that indeed this treatment is okay.  

We relish the relationship we have had with all our au pairs and love that they have loved our daughter so much.  They truly are members of our extended family and I hate to see, what I think are mostly good natured people being taken advantage of.  

Au pair is not French for indentured servant.  

Wednesday, November 27, 2013

Living on Borrowed Time

Your days are numbered Girlie!

Of course I am talking about Maya.

Tonight, she walked into my room, like she's done ten thousand times before with a book in her hand and I am ready for her to ask me to read to her.

She stood in front of my bed, saying nothing.

OK, you look like my daughter but you are not chattering a mile a minute, telling me of how hard it is to get the Hedgehogs to go to sleep or talking about how Thomas and the Engines are being naughty.  

She's still standing there silent.  And I immediately think of Invasion of the Body Snatchers.

Finally I say to her, "whatcha got there, Maya?"

"A book."

"Do you want me to read you a story?" I say.

"No, it's a Dutch book."

Ok, flag on the play.  Maya being autistic and loving structure hates it when I speak Dutch.  I have always spoken English to her and her father has always spoken Dutch to her, and for her, that's the way it is.  It can't be any other way.  When she was younger, she would cry if I would speak Dutch to her teachers or to the telemarketer who was trying to sell me a food dehydrator.  Now that she is older she has gotten the concept that I must sometimes speak in Dutch to other people, but if I say even one word to her in Dutch.  I get ENGLISH and often a few complimentary foot stomps.

On her birthday it's so bad that we cannot sing her a birthday song, because she hates hearing Leo sing Happy Birthday and hates me singing the Dutch equivalent Lang zal ze leven.  

Autism.

Anyhoo, me reading a Dutch book is completely out of the question.

So Maya's standing there, book open to a certain page looking at it.  I ask her what story it is.

She says it is not a story but a song book.  So I said what song, and she shoots off the Dutch title.

"Lemme see," I say.  She brings me the book and sure enough that was the song, but the funny thing is, there were no pictures on the page, only the title written and the words to the songs, there were some butterflies on the page but the song had nothing to do with butterflies.

No other possibility except that she read the title to know what the song was.

I stayed calm, because when I get all excited about milestones, I lose her, so keeping my voice calm and even (a first for me), I asked her if she read the title of the song off the page.

"NOOOOOOOO, I told youuuuuuuuu, I don't know how to reeeeeeeeeaaaaadddddd!

OK, I ask her to see the book again.  I flip the pages to about 10 pages later and find another song, Zie de maan schijnt door de bomen (See the sun shine through the trees).  I ask her, "Maya, what song is this?"

"I don't know, stop asking meeeeeeee!"

Never mind I say.  And Maya and her book walk out of the room.

Ten minutes later she comes back, without the book and says, zie de maan schijnt door de bomen.  

Without looking up, I ask again, Maya did you read that?  She stomps.

OK, little girl, the jig is up.  


Guest Posting at Times of Israel

Hey there, I was on the warpath a couple of days ago over at Times of Israel?  The subject of my rant?  Humble Brags.  Go check it out!

Friday, November 22, 2013

Autism's Couture

For the last ten days the world of autism has been abuzz with Suzanne Wright's call to action for a national plan dealing with autism.

Autism groups and parents everywhere have met Ms. Wright's letter with scorn and offense, saying that Ms. Wright's claims of suffering of both people with autism and their families doesn't encapsulate autism.  In particular, neurodiversity groups have gone on full range assault stating that millions of autistic people have succeeded and are happy, in spite of their challenges.

Don't even get me started on all the criticism of Autism Speaks.

While this debate, and many others on autism rages on, beautiful moments like this one are happening.  Kids (and adults) on the spectrum are finding their gifts, becoming successful and finding a place to belong.

I must say that while I have opinions on all of autism's debates and at times, when I am feeling particularly feisty will sometime engage in tearing someone a new one civilized debate, at the end of the day what truly matters is our particular brand of autism and how I can help my daughter be the best she can be without killing off her joy in the process.  Besides,  autism looks different on just about every person on the autistic spectrum, therefore there cannot be one point of view, one organization, one form of treatment that can address all people on the spectrum.

Ultimately, there is room for all these points of view.  Just because I have a child with autism doesn't mean that I know what is best for someone else's child.  Hell, I am not even sure that I always know what is best for mine.

And that's the thing about autism.  There is no buying off the rack.  It's designer all the way.

It's a custom made enterprise, with lots of different designs, fabrics and colors.  You have to go through a lot of try-ons before you find something that fits.  Sometimes you need to throw out your stylist and go for a new look.  On some, it looks wonderful, and enticing, on others you end up looking like Bjork in a Pelican dress.  Sometimes the one that looks beautiful on one, looks like a burlap bag on another.

For some, it seems like nothing will ever fit like a glove.

So, while Autism Speaks is not my favorite organization out there, and I sometimes have a problem with the stand neurodiversity takes, and I am not a GFCF advocate,  I think it is good that we have all these different types of organizations out there because our autism probably doesn't look like yours and what we need is different than what others need.