Monthly Archives: July 2017

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See the possibilities in your child, not the limitations

Can you believe that Yirmi just recently turned 5?

Until Yirmi was born and we received the birth diagnosis of Trisomy 21, I knew very little about what that entailed.  I had the stereotypical perceptions of people with Down syndrome based on very limited personal connection.  When Yirmi was born, my eyes were opened to a much broader, more appreciative and more accurate way of seeing people with differences.

Though people tend to assign a lot of significance to the differences (skin color, religion, political affiliation, income level, abilities), we’re all more alike than different, and we all benefit when we place more emphasis on what makes us similar.  More than anything – every one of us wants to be valued for who we are.  And this has been my focus in raising Yirmi.

Yirmi and his big sister, May 2017

Yirmi and his big sister

We had a 3 hour appointment with a developmental pediatrician very recently (the first since leaving Karmiel 2.5 years ago), who was blown away by Yirmi.  She kept exclaiming that she’s never seen a 5 year old with T21 like him in her decades of working in the field.

She said that he is bright, communicative, emotionally present, focused, takes initiative, and has the confidence to try new things in a new environment.  She told me that these aren’t qualities that she’s seen in a child with T21 of this age, particularly combined with a language delay like his (‘Usually these kids are shut down.’).

A week later I took Rafael for his intake appointment, and again she remarked on how taken she was with Yirmi.  “He’s so emotionally intact.”

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Why would it be unusual for a child with T21 to not be emotionally intact?  To not be confident or communicative in new situations?  To not trust their abilities?  To not be willing to try new things?  To not keep trying to be understood?

Could it be in part because of how those with whom they interact regularly treat them?  Are the frameworks in which they spend most of their time focused on what they can’t do instead of what they can?  Are they being defined by limitation instead of possibility?

Having fun with Daddy!

Playing on the trampoline with Daddy!

People have told me Yirmi doesn’t act like he has Down syndrome, or that he must have it ‘just a little bit’.  What does that even mean??? What limited perceptions are those comments based on??  You can’t have T21 just a little bit – either you’ve got it or you don’t.  He definitely has garden variety Down syndrome, present in every cell of his body.

Though professionals have told me that Yirmi is doing very well, it’s not because he’s inherently different or better than any other child with T21.  I’m not holding him up as an ideal or trying to imply he’s the most amazing child with T21 ever. Comparisons of performance and impressing anyone else isn’t my goal – he is who he is and and regardless of percentages or testing or anything else, he is enough as he is right now.

Having said that, in line with the 80/20 principle, I believe 80% of children with T21 can be doing just as well if given similar support.  I don’t think he should be as unusual as the professionals say he is.  Actually, I think a lot of kids with T21 are already doing great but probably most of them are also being treated like outliers.

I passionately believe that every child deserves to be treated with respect. With respect for where he is right now, with support for whatever limitation he has at this time, and with belief in who he will be in the future.

It’s not hard to do this.  It’s really not.  It may be counter cultural, but it’s not hard.  People think I must ‘work so much’ with Yirmi.  I don’t see what I do as work; he’s not my project to fix.  What I do that I think is of the most value is to parent him the same as all of my other children – I look at what his needs are and try to find integrated ways to support those needs in our daily lives.

Integrating support in a fun way - trampolining!

One example of how we integrate support in a fun way – trampolining!

In my opinion, the most challenging thing is to recognize the aspects of your thinking about your child that are limiting, and then to change those thoughts.  Your actions will follow your thoughts, and your child responds to your thoughts about him.  If you think your child is capable, you’ll have different expectations and take different action than if you think your child has significant limitations.

To consciously shift from a paradigm of limitation to possibility means seeing the potential in your child and acting in alignment with what you trust he will become, long before you see that in him. 

If he can’t yet talk or can’t yet walk, it means believing that if you keep giving good quality input, that you can trust the timing of the output (ie performance) even when it’s taking a lot longer than you would like. At age 4, Yirmi still hardly said any words.  Now a year later, we’re seeing an explosion of speech.  And I trust that we’ll continue to see significant gains with time.

Shifting that paradigm means reflecting your child’s positive inner value to him even at times that he’s immature, irresponsible, unreliable, hypersensitive, or mean.  It means trusting your child’s potential and holding on to that vision even when external circumstances might give you reason to feel discouraged.

And that’s something that benefits every child,  regardless of diagnosis!

Avivah

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Lessons from the Pool – recognizing the limitations of childhood thinking

Last week I went on a two day retreat with 300 other women.  I had a wonderful time and some powerful moments of growth and awareness. Since they were so personal I wasn’t going to share about them but I was strongly encouraged to do it by someone who told me it would be of service to others.   Here is one blinding moment of clarity and light that I experienced.

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When we got to the hotel in the north where we were staying, the pool was open and it seemed almost everyone opted to go in!

I held back for a bit, since I don’t particularly enjoy being in a crowded pool. After a while it thinned out a bit and I went in. I looked around and realized that although there were a lot of women there, they were mostly clustered in groups around the edges of the pool. If I were to swim across the width of the pool, I would mostly be able to do that. So I set off for the other side, and the deep pleasure of swimming surged through me as I sliced through the water. I went back and forth, thinking all the time how amazing it was to be in the water, feeling one with myself and my movement through the water. I haven’t swum in fifteen years and it felt so, so good to be swimming again.

At one point, I thought to myself how nice it was that I can enjoy swimming even though I might not look like a very good swimmer to someone watching. I was feeling good to be fine with myself regardless of what others might think.

And then I got to the end of the lane and someone said to me, “You swim beautifully!” “Thank you”, I said, while I thought “hmm..”  Why is someone in a pool full of women singling me out to tell me how well I swim but my mind is telling me that I’m a sloppy swimmer? Cognitive dissonance.

I was pondering this as I continued my laps, wondering who was right – me or the outside observer?  It’s strange that I had this negative self-assessment as a swimmer when I love swimming and the only feedback I could remember was positive and took place when I was 12. At that time I was assessed in camp to determine what level group I would be in. The instructor, who was a kind of tough drill instructor type woman not given to praise, exclaimed about me: “Wow, she has power!!!”  And almost as an aside added, “But her technique needs a bit of work.”

This women was impressed by me! I always thought back on that comment as a positive memory. So how if I’ve only had positive feedback on my swimming, I wondered, had I somehow internalized that comment to mean I was a lousy swimmer?  When it was clear to me and everyone standing around that she was very impressed?

All of a sudden, I realized that it was ME who gave myself that definition. Me, who found the tiny possibility of negativity in her comment and blew it up larger than life; me, who created that image in my mind of myself. Me, who continued to unquestioningly own that definition three decades later.

‘If my swimming form could use some work, obviously I was a sloppy swimmer,’ I had somehow reasoned. Is that what she said? Was that the truth? No. It wasn’t based on anything in reality. Just my inability as a twelve year old to allow myself to completely accept wholehearted praise for what it was.

“How many other times and in how many other ways have I done this to myself?” I wondered.

As I had that thought, I was suddenly I was so overcome with emotion that I just started crying right there in the pool.

I can’t describe to you the power of that moment, realizing with stark clarity that I had limited myself for so long without even being aware of it.

This wasn’t about my swimming. In my world, how well I do or don’t swim has very little significance.

It was the power of deeply recognizing how our thinking patterns as children carry into adulthood. If unchallenged, they continue to run our lives behind the scenes. I’ve consciously changed so much of the scripting of my younger self, and this has benefited my life enormously. But I never could change this scripting because it wasn’t until that moment that I had a deep gut level realization that this  way of thinking had been a subtle and pervasive part of me.

It can be painful to let the spotlight shine on our inner workings and imperfections, but it can also be so powerful and freeing. For me this was an extremely expansive and illuminating experience, allowing me to start to see and move away from a limitation that was invisible to me until that moment.

And oh – I can now recognize without reservations that I’m a good swimmer and I have been for many, many years.

Avivah

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My tips for making your marriage awesome!

My husband and I are celebrating 25 years of marriage!  Eleven wonderful children, several national and international moves, job changes, health scares…we’ve navigated lots of situations together over the years and our marriage is a source of great happiness and stability for us both!

In honor of our anniversary I want to share some of the lessons that have been helpful to me in building our relationship.

Me and my husband

What I say is applicable to husbands or wives, but for simplicity I’m going to address this post to women. I also believe that in the typical relationship (not including abuse or addictions) women have more power than men do to significantly impact the quality of the relationship.

Here’s my first  tip for a good marriage but only those of you who aren’t yet married can use this one:

  • Choose well.  Choose a spouse who is kind, caring, emotionally stable, shares your values and with whom you emotionally connect.  Lots of problems that later come up in relationships are because people didn’t choose well and that’s something that’s really hard to overcome.

I was young when I got married but I consciously sought out role models of strong relationships and thought about what kind of person would be a healthy match for me.  Notice I said ‘healthy’, not ‘good’.  People get into relationships that can feel exciting or good on some level but not be healthy.  People mistakenly think that marriage is all about meeting the right one and the stars sparkling in the air around them.  That can be part of it, but there’s a definite place for carefully looking for the qualities that are important to you.

Okay, on to other musings that are of applicable to everyone!

A general principle of healthy relationships is that people want to be around people who make them feel good.  When you were dating, the odds are high that you and your husband enjoyed one another and felt appreciated by the other.  And you loved being around each other.

But too often, the sheen wears off after you’ve been married for a while and you start focusing on what isn’t and what you don’t have instead of what is and what you do have. You want to change him to be more like what you want him to be. Guaranteed recipe for misery.

  • Be conscious of your husband’s good qualities and let him know how much you appreciate them!  Just because you see some other less desirable qualities doesn’t erase all those good qualities. Every one of us is a work in progress. Don’t be shy about letting your husband know you think he’s a great guy!  What you focus on grows.
  • Don’t get so used to the things he brings to the relationship that you take them for granted.  My husband goes out to work every day to support his family and has done this for many years.  Does his consistently showing up and being responsible not deserve positive feedback just because he’s been doing it so long??  I let him know on a regular basis how much it means to me that he works so hard to take care of us even though he’d probably rather be kicking back on a beach somewhere.

And when it comes to making those changes that you want him to make – he’s lots more likely to make the effort to please you when he feels accepted and appreciated by you.

  • No one wants to feel taken for granted, belittled or inadequate.  I’ve often heard wives talk about their husbands as if he’s one more child that needs to be tended to. Ladies – guys aren’t completely obtuse.  When you think about him like this and speak about him to your friends like this, don’t you think he gets a sense of that even if you don’t directly say anything to him?

And let’s face it.  How many of us can feel that kind of exasperation and not express it?  Come on, you’d have to be a saint to be thinking those kind of thoughts and be able to keep them to yourself!  Learn to shift your thinking by focusing on his good qualities.

  • You’re not his mother.   It’s not your job to fix him or oversee all the details of his life.  He’s an adult, so treat him like one.
  •  When you husband does something to make you happy, don’t point out all the ways he could have done it better.  Let him know how much you appreciate the effort.
  • When you first see your spouse after a long day apart, don’t jump into complaining about how hard your day was.  I know, it’s hard to set aside one’s desire to be heard.  But take a few minutes to warmly greet your spouse.  A warm smile and welcoming, “I’m so happy to see you!” help make your home a place your spouse wants to be.
  • Let him make mistakes without pointing out everything he did wrong.  Seriously, would you want to live with an all seeing eye who pointed out all of your errors? I’d want to run in the other direction!  That’s one reason for the escape of men to their man caves.
  • Ask for what you want.  Don’t hint around and don’t expect him to read your mind and then get resentful that he didn’t do what you wanted him to do!  And don’t tell yourself if he really loved you he’d know what you want without you telling him – that’s not true and it’s just not fair.
  • Make time to spend just enjoying each other. Not at home, distracted by the chores that need to be done or the kids that need to be put to sleep.  It’s worth the effort to get out on a regular basis.  My husband and I go out every week and when we took a break from this for a couple of months due to scheduling changes, I  felt something was missing.
  • Have friendships outside of your marriage; don’t expect your spouse to be the one and only person you can talk to about everything.  That can become a burden.  My husband is my best friend, but that doesn’t mean I expect him to be interested in every single thing that interests me!
  • Similarly, don’t expect your spouse to be your therapist and to listen to all your sadness and pain – that gets old pretty fast.

And here’s a really big one, so big that I could have really put this first.

  • Make self-care a priority.  It’s not your husband’s job to make sure you get enough sleep, time with friends, exercise, meditation, yoga, bubble baths, upbeat music, etc, etc.  It’s your job to make yourself happy.  You can ask for his logistical support and chances are high he’ll be happy to help you make it happen if you’ve been warm, affirming and positive toward him.  Most husbands really want to make their wives happy.  But it’s not his job.

If you could live with someone who was cheerful and fulfilled by her life, or someone who was a resentful martyr who put herself last, who would you rather spend time with?  Who would you want to come home to?  I’ve said this before about raising children but it’s just as true with marriage – you do everyone around you a favor by making yourself a priority.

I could go on and on with lots of little tips but it really comes down to this: treat your husband as you would want to treated- with kindness, respect and appreciation.  Give him the benefit of the doubt when something goes wrong.  Learn to let go of having to have things your way, and realize that ‘our’ way can be even better. Stop shaming, blaming, and complaining.

You know how I learned all this?  By making lots of mistakes!  At times I’ve been petty, judgmental, not respectful, impatient, unappreciative and resentful.  But I chose a good man and I was smart enough to remind myself of that even when I was feeling disgruntled. I knew that strong marriages didn’t happen by themselves; I messed up plenty but I’d try to do it better or differently the next time.

Personally, learning to let go and accept and appreciate what is has been one of the biggest lessons for me.   Some people are naturally easy going and accepting; I’m not one of them.  I came into marriage with a strong propensity to move fast, think fast, and be detail oriented, which strongly correlates with being impatient, reactive and critical.  I’ve worked very, very hard to learn to slow down, to make room for the interpretations that others bring to situations, and to focus on the positive.   And that’s made a huge difference in my marriage.

My husband has been an incredible source of acceptance and support for me through all these years, and I’m very, very grateful to be married to this amazing man.  Every year has just gotten better and I’m looking forward to the next 25 years!

Avivah