Monthly Archives: March 2016

L to R: ds13, dd21, me, ds9, dd15, dd19, ds17, dh, ds8 ; front - ds6 (missing ds3 and ds22)

Blasting through pressure by building a family team

Purim is a few days behind us and it was wonderful!

Our front door - welcome!

Our Seuss themed front door – welcome!

The day before Purim I was feeling quite pressured by my to-do list – it felt a mile long.  It was a mile long.  And it was obvious to me that I couldn’t do what needed to be done by myself.

Getting it all done meant pulling everyone together to work as a team, and our family team was amazing!  This is not something that happens by itself.  At busy times it can feel like there’s no time to get everyone galvanized and organized because it means slowing down.

But taking that time to slow down and make a plan with your family means once you’re ready to take action, you can zoom forward like a turbo-charged sports car rather than rushing, stressing and resenting those around you for not doing enough.

We had decorating going on, we had cooking going on, we had cleaning going on, we had mishloach  manos preparation going on, and we had shopping going on!  All at the same time!  Not only did the Werner team get everything done, but we had fun connecting while doing it!

Dd21 did a wonderful job planning a double theme of Dr. Seuss and cowboys, voted on by the younger boys.

The Seuss wall

The Seuss wall

Truffula trees and Sally looking out the window

Truffula trees and Sally looking out the window

On the opposite wall, the cowboy theme:

The jail, sheriff's office and trading post

The jail, sheriff’s office and trading post

The grub table

The grub table

A neighbor not only asked if she could bring her children who were all dressed as cowboys to do a photo shoot using dd’s decorations as props, she later brought her guests to show them our decorations, too!

Here’s one of our cowboys.

Ds9 dressed for Purim fun!

Ds9 dressed for Purim fun!

We had twenty four people for our Purim meal. One table was Seuss themed.

L to R: ds13, dd21, me, ds9, dd15, dd19, ds17, dh, ds8 ; front - ds6 (missing ds3 and ds22)

L to R: ds13, dd21, me, ds9, dd15, dd19, ds17, dh, ds8 ; front – ds6 (missing ds3 and ds22)

The second table had the cowboy theme.

Cowboy table

Cowboy table

Yirmi was napping when we took the family photo above, but he woke up with plenty of time to participate.  I’ll make up for leaving him out of that photo by sharing two photos of him with guests. :)

Yirmi having fun with a favorite guest

Yirmi having fun with a favorite guest (who also visited him in the hospital after his surgery)

Yirmi with another guest - he charmed the girls, too!

Yirmi with another guest – he charmed the girls, too!

Naturally the menu was cowboy themed, and dd added labels to the ‘grub’ buffet table to connect it to the Suessian theme.  We had: fresh rolls, cornbread, chicken wings,  franks in blanks (‘Go, hotdogs, go!’), mini triangle borekas (‘There’s a wocket in my pocket’), fresh salad, coleslaw, a veggie platter (‘truffula sticks’), roasted tomato dip and chummus.

Not shown: rainbow cake

Not shown: rainbow cake

Dessert: banana bread, rainbow cake, red devil cupcakes with blue frosting, brownies (cowpies :)), hamantaschen and popcorn.  (In case you’re wondering, everything was homemade except the dips. )

Ds22 surprised us by stopping in for fifteen minutes right after we ended our meal.  He had last minute plans that brought him to our area for a very short time.  When I hugged him and told him how happy we were that he was able to be there, he told me he’s been to a number of homes in the last two weeks (he’s been helping to fundraise for his yeshiva with friends) and there have been a lot of homes with nice atmospheres.  Some have been more exciting than ours, but, he said, our home had the nicest atmosphere of them all.

Of course he’s biased because it’s his home and family, but still, you can imagine it was nice to hear that!

If you’d like to explore ways to build your family unity or any other concern related to your family, be in touch via email at avivahwerner@yahoo.com to set up a complimentary 20 minute consultation.  Let’s talk about how I can support you in creating the home environment you want!

Avivah

Does how you treat your child affect if he is ‘high functioning’?

In response to my last post, a reader asks:

“unfortunately, not all Down children are so beautiful and cute. I mean, you can hardly even tell that Yirmi has it! What would you tell a mother who’s child is not as charming?!”

A person’s value isn’t based on how charming he is!  Yirmi being who he is now didn’t keep the doctors after he was born from repeatedly asking me why I didn’t do the prenatal tests that would have allowed me to abort.  So cute or not, to them he had no more reason to exist than any other child with T21.

I would continue to say that a child is a child and deserves to be loved and valued for who he is, as he is.  Every single person is beautiful and a genius in some way and that means all children – with or without Down syndrome.  We need to broaden our mental picture of what beauty is. Is there a mental ceiling on what a child should look like or act like for his parent to be willing to embrace raising him?

(To all of those reading: please consider changing the way you refer to children with Down syndrome in a way that defines them first and foremost as a person – Yirmi is not a ‘Down child’ and neither is anyone else who shares his chromosomal makeup. Here’s something I wrote in which I explained my perspective. As the wise Horton the elephant of Dr. Seuss fame says, “A person’s a person no matter how small.”)

Another reader responds:

“I’d also add that what is normally seen as a reason for despair in parents of “different” children is often actually a consequence of it… That is, Yirmi probably presents as someone who hardly looks different just because the whole family always accepted and appreciated him for who he is rather than let the difference create a distance. In times past, children with conditions such as T21 or autism would be locked away and ignored, so of course they’d never realized any of their potential. It took inexcusably long for medical profession to realize that the same would have happened to neurotypical individuals if they were placed in same circumstances.”

I completely agree with this sentiment.  The more you treat someone like one of the group, the more they act like one of the group.

I did a LOT of thinking for the first couple of days after Yirmi was born – all I did was think, actually – and one thing I felt in my bones in those early, early days was that as he got older people would look at him and whatever he accomplished in his life and tell us we were just lucky.

Children are unquestionably born with different abilities, but once they’re born I don’t think luck plays as big a part as is generally believed.  You work with what you have, you support what you see in your mind even if you don’t see it in front of you yet.  If I would have treated him as a child with the limitations I was told he would have, I’m sure he would be very different.

For example, Yirmi didn’t look me in the eye for six weeks.  That’s a long time for a newborn – my other kids looked me in the eye the day they were born.  So I could have assumed he was autistic (which ten percent of children with T21 are) and become discouraged that I was one of the unlucky parents who got a ‘lower functioning child’.  Then I would have treated him with those low expectations and he would have responded as such.  Or I could have thought, he has his own time schedule and believe he would do it when the time was right.  And he did.

That line of thinking follows all the way through the years when raising children – and this is true of raising any child.  They will reflect your belief in them.  A parent has to learn to see past the current challenges or limitations and trust the developmental process, especially when your child is on the slower side of the developmental curve (emotionally, socially, intellectually or physically).

Back to issue of social supports.  Children with Down syndrome are strong visual learners.  If a child spends his days with a group of children with disabilities, behavioral issues and emotional issues, he will copy those behaviors.  This is why so many children with T21 have autistic behaviors when they aren’t autistic – because they copy the behaviors of those in their special education programs.  If a child is surrounded by neurotypical children acting in a socially appropriate way, that becomes a model for him.

How a child acts is less about his disability (though it undeniably plays a part), and much more about who he is patterning himself after and what is expected of him.  Yirmi behaves similarly to his siblings and the other people in his life.

Ds8, ds3, dd15

You won’t be surprised that I’m opposed to the routine isolation of children with disabilities in separate classrooms or social situations.  Inclusion been shown to be highly beneficial to the child with a disability as well as the neurotypical children in the classroom, and that this is something parents have to fight for rather than an accepted norm is simply horrendous.  It’s just wrong on every level -we as a society are creating very limiting long term realities for people with disabilities.  It doesn’t benefit individuals, families or society at large.

Avivah

What I would tell a new parent of a baby with Down syndrome and a fun video featuring Yirmi!

Friday morning I got a call from our pediatrician, asking if she could pass our phone number to a new mother who just had a baby with Trisomy 21.

Two weeks before that, a blog reader forwarded an email to me about a newborn baby with T21 who is  available for adoption to a religious Jewish family in the US.

Two weeks before that, another blog reader forwarded information to me about a woman in Israel who had given birth to twin boys with T21 who was shattered and devastated.

I gave my number to the doctor for the new mother, was in touch with the contact about adoption for the newborn baby and spoke to the mother of the infant twins.

What would I tell a new parent about raising a child with Down syndrome?

I know, it can feel overwhelming when you get the news.  Maybe your mind is racing and you can’t believe that this has happened to you – this is supposed to happen to ‘other’ people.  And now you’re the ‘other’ person.  Maybe you’re unable to stop crying, maybe you feel that you did something wrong that you’re now being punished for.  All of the doctors and staff (nurses, social worker) who spoke to me gave the impression that this was very sad news.

But I want to share with you a much more accurate perspective.  It’s not sad.  It’s not bad.  It just is.  Your child has been born with a medical difference, and that feels significant.

But it’s not nearly as significant as you might think.  In fact, I would say that the less you pay attention to the diagnosis and the more you connect with him as your baby, the happier you’ll all be.

Here is what I think the most important things are to know in these early days:

  • Raising a child with T21 is pretty much the same as raising any other child.
  • He is capable of so much more than you think – put aside any preconceptions of who he is and what his limitations will be.  No matter what the doctors tell you, they have no more idea than anyone else what his potential is.
  • Trust his potential and support his process in the way that is right for who he is, not who you think he should be.  He doesn’t have to prove himself.
  • Most importantly, just love him.  You are going to get so much love back.  One day you’re going to look back and remember how you cried and felt devastated when he was born, and wish you could redo your initial response to reflect all the joy your child has brought into your life.

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I just discovered this short video that ds8 and ds3 recently made together when I was out of the room. They aren’t supposed to touch my computer without permission but I was glad to have it and am sharing it with you because it’s an spontaneous and unscripted slice of our every day life with a child who happens to have T21.  I’d love to know what your reaction to this video is!

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When a child with T21 is born, there’s an assumption hanging over his head that he’s less inherently worthy because he’s different.  We presume that having differences is a bad thing.

It’s really not.

But because of this negativity surrounding Down syndrome, parents feel like there’s been a mistake somewhere, something unfair has happened to them that shouldn’t have happened.

There are no mistakes in this world.  Your child isn’t a mistake.  His entrance into your family isn’t a mistake.  You were divinely chosen to receive this child.

Not because you’re spiritually better than anyone else and ‘can handle it’.  Not because you are worse than anyone and ‘he is your test’.

He is a child with unique gifts and abilities.  He will shift your paradigm of parenting, he will teach you things you didn’t know you needed to know – and my personal feeling is that we won the lottery against all odds when Yirmi was born!

Avivah

left brain right brain

Writing with your right brain – connecting to your intuitive wisdom

Almost two years ago I was badly burned in a kitchen accident, and while I was hospitalized had plenty of time to reflect about what had happened and what I was meant to learn from it.

Today, I was looking back through my journal from that time and reread some passages that were particularly powerful.  To get clarity when I was grappling to find a positive message for what I went through, I used an approach that I had never used before when journaling – writing questions with my dominant hand and writing responses with my non-dominant hand.

Most of us primarily process using our intellect.  And that’s great, but sometimes when we need to access our intuitive wisdom, it’s so deeply buried or out of use that there’s a echoing silence instead of the voice our souls speaking to us.  Sometimes there’s the confusion of different messages vying for your attention and it’s hard to know what to listen to.

left brain right brainA way to bypass the intellectual and perfectionist left brain and get in touch with your intuition (which I call the voice of the soul) is to write using your non-dominant hand, which connects to your right brain.  The right brain is intuitive and creative.

This is what I did in the hospital.  When I used the alternate hand writing, I was deeply touched by the messages of self-love and concern for self-care that emerged, messages that helped me to keep the first things first and recognize what the first things were.

After rereading these notes today, I decided to use the process again to get clarity on some of the thoughts that have been swirling around in my mind the last couple of days that are related to my teaching and consulting.  Why should I wait for a major trauma to unlock the wisdom and clarity right inside of me?

My question today was, what should I be focusing on right now?

The answers I’ve gotten using non-dominant hand writing haven’t been the answers I’ve expected or gone in the direction I would have anticipated!  It’s fascinating to see answers emerge that get to the heart of an issue while sometimes seeming not to directly address the issue at all.

Here’s an answer to the question above: “Focus on what brings you joy.  Remember that self-care takes time and energy, and leave time for that.  You will always be dutiful but do what makes your soul feel alive.  Friends are important.  Nature and sunlight and greenery are important.  Sleep.  Remember you are enough as you are and give yourself time to relax and have margin without feeling guilty….”

This was amazingly centering for me.  I went on to write other questions that were more targeted to some specific things I was thinking about.  It was really interesting to notice my entire mental state shifting when writing.  It takes a long time for me to write using my non-dominant hand and all of my energy is focused on that.  It’s hard for me to explain the state I shifted into when using this process – I was in a completely different zone.  By the time I finished, I was exhausted but had a deep feeling of clarity and calm and knowingness.

To do this, it’s pretty easy to get started.  The main thing is not to think when you write with your non-dominant hand – write whatever comes into your mind and let whatever comes out, come out.

If you’ve used this technique, I’d love to hear what your experience was like!

Avivah