Category Archives: parenting

clarity

How To Get Clarity About What You Really Want

I think much of the inability to teach others how to respect you stems from a confusion as to what our needs really are or where boundaries should be. How can one achieve that kind of clarity? How does one teach others when one often cannot articulate one’s needs to oneself?

What an insightful comment on my last post!  Yes, this is completely true – so often we don’t know what we want and therefore we can’t communicate it to another person.

The six foundational principles of my Leadership Parenting approach are:

Connection, Compassion, Clarity, Courage, Calm and Correction

Every one of these are critical in parenting effectively.

Let’s talk a bit about clarity. Very, very often when parents ask me questions about how to handle different situations, I’ll ask them what they want.  “What is your goal in the situation?  How would you like this to play out?  What do you really want?”

That might seem simple, but knowing what you want often isn’t simple at all.

I recently had my first Supernanny stint, when I went into the home of clients to watch their family dynamics and see firsthand what was happening.   During our session that followed, I told the mother that she wasn’t clearly communicating to her child what she wanted of him.  In the privacy of my office, I was able to ask, “What do you want?”

She explained and explained and explained, and I finally told her: “I’m a mature adult sitting here listening to everything you’re saying, and I still don’t know what you want!  We can’t expect a child to be able to figure it out – we have to make it easy for him!”

You know why it wasn’t clear to her child or to me?  Because it wasn’t clear to her!

It’s okay not to have clarity. It’s not a moral failing. It’s understandable to feel ambivalent and have conflicting feelings about what you want. But lack of clarity can lead to unnecessary pain and frustration in our lives. To get the most out of life, you need to be able to clearly articulate to yourself what you really want.

Why is it so hard to get clarity?

  1. Sometimes we’re afraid to admit to ourselves what we want. It feels too big, too unreasonable, too hard to attain. So we readjust what we want to what we think we can have, and then we tell ourselves that’s what we want. However, there’s often a residual niggling discomfort that remains of the subordinated original desire that will keep poking at you.
  2. Sometimes the lack of clarity is because you’re living life based on what others expect of you and doing what everyone else does.
  3.  Another reason for the lack of clarity comes from having competing agendas – for example, someone who wants to be a stay at home mom and also wants career success. I recently experienced a conflict of competing agendas, which I shared at a seminar with the person leading the sessions. His feedback was that I have to be honest with myself.  That was not the answer I wanted to hear.  I felt like screaming in frustration when he gave me that answer, because (I thought) I was being honest with myself and that’s why I felt conflicted!

But when I thought it over afterwards and didn’t feel so defensive, I realized he was right. There was something I was saying that I wanted because I felt I should want that – and part of me really did want it and felt excited at the thought of taking on that role – but there was something else that I wanted more which I was given my available life energy to.

Don’t be afraid to ask yourself, “What do I really want?”

To tune into the answer, choose a quiet place when you can be alone with your thoughts. It can be helpful to lie down with some beautiful relaxing music playing in the background, or to sit outside in nature. I like sitting in my garden – you don’t have to go far from home! The main thing is that it feels peaceful to you.

Take some deep breaths and try to quiet your mind.

When I start this process, I initially get mental noise, like the static when you’re not tuned into an official radio station. “I don’t know what I want! I want this and this and this and I can’t have it and it’s to much and I’m completely overwhelmed!!!!”  While I consciously may say I want clarity, there’s part of me that likes being able to be ambivalent because then I don’t have to change anything I’m doing.  But if I keep sitting with myself and giving myself space for the response to come, the answer gets more and more clear.

Your inner self really does have all the answers.  However, sometimes you’ve gotten so used to habituated responses that aren’t in tune with that inner self that you can’t distinguish what is the healthy voice of truth and what is the voice of fear or habit.  It can be helpful to get feedback from someone you trust who is outside the situation; those people can often see things more clearly than you can.

Being a parent is such an amazing opportunity because it opens us up to incredible possibilities for growth and awareness that we wouldn’t have had otherwise!  Seriously.

Having to be clear with your child forces you to think more about what you say you want and why you want it. Let’s say you’re battling a child to take a bath every night or eat dinner. What do you really want? Do care that much about the bath? Is there something else that you care more about that you’d rather be investing your time in?

Often parents admit that they don’t really care that much about the things they’re fighting with their children about, but they feel these are rituals or activities that everyone should do so their child should also do it.

Well.

Doing what you think you should do because everyone else does it doesn’t align well with being happy!

Sometimes it becomes clear that yes, the bath or meal or whatever else really is the priority. In that case, it shouldn’t be set aside but there might be some more effective ways to go about achieving your goal.

There’s no one right way to parent and there’s no one right way to deal with a given situation. It depends so much on what you really want – you can have two very happy and healthy families who have chosen completely different ways of living their lives.

When you get clarity you can create healthy boundaries and teach others how to treat you, as you align what you say with the actions you take.  That’s a very empowering place to be!

Avivah

treat others how to treat you

You Teach People How to Treat You

I was wondering if you could share with the blog readers more about the idea that we teach people how to treat us.Can you explain how that works, and how we can change the way they treat us?

Yes, I’m happy to explain that a bit more!  Before I begin, I want to clarify one very important distinction: we do not have any direct control over the actions of others, and can not directly change how they treat us.  What we do have control over is our own thoughts, speech and actions.  That’s where our power lies and that is always where our focus has to be.

I was speaking recently to someone who was complaining about all the people in her life who don’t treat her kindly. People are mean to her, kids are mean to her children, and everyone who passes her yard is mean to her pet!  And then a five minute walk away just a day earlier, I met someone who told me that the people living in that area are just wonderful, everyone is so kind and helpful. Are these two people living on different planets?

In a way, they are. Their inner worlds and the way they view themselves is constantly playing out with those around them.

**This is not about shaming oneself or feeling at fault for being treated badly by others. Not at all. There’s no blame here at all. It’s about recognizing where you have power to make your life better.

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My eight and ten year old sons came home upset one afternoon after playing with a friend. This is a boy who they’ve been extremely nice to, a nice kid who has strong reactions to what seem to others like very small triggers. In this case, he got upset and began throwing bricks at them, then ran after my eight year old and punched him.

When they got home, they asked for my feedback on how they could have handled the situation.  One said he’s not going to play with this boy anymore and he doesn’t have to keep being nice to someone who isn’t nice to him. The other said he sees it’s very hard for this boy to control himself and he doesn’t want to be treated like this, but he doesn’t think it’s nice to tell him he’s not going to be his friend.

This is a classic example of “we teach people how to treat us”! Substitute coworker, spouse or neighbor and you have the same kind of situations that we adults are dealing with all the time!

I told them they get to decide what kind of friendships they want to have.  How do they want to be treated by their friends? There is never a reason to tolerate someone mistreating you in the name of ‘kindness’ to them. You have a right to be treated respectfully and it’s your responsibility to teach people to treat you with respect.

So what would that look like in this case?

treat others how to treat youFirst of all, I told them in the future if it happens to leave the situation and come home immediately.  If he comes to play at another time, he can be told, “I don’t like what you did (yelling and throwing things at me).” They can then choose if they want to give him another chance or not.  If they give him another chance they can let him know, “If you get angry and hit me, I’m going to stop playing with you”.

The boy now knows clearly what their expectations of the relationship are. Can they control if he becomes explosive?  No, absolutely not.  But if he acts in an unkind way again, they will honor their own boundaries by leaving the interaction or even by leaving the relationship- and he will have learned that they mean what they say and will not interact with him if he can’t treat them nicely.

Now let’s look at another possibility.  What if they continue to play with him time after time regardless of how they are treated?  Then have them taught him that they will tolerate being abused from a ‘friend’, that it’s okay for him to explode when something bothers him.

Their response to his action teaches him how to treat them.

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If a young child playfully bats you in the face or calls you a name, how do you respond?  Do you smile and let her know you think she’s so cute?  Do you ignore it and tell yourself it’s not a big deal? Or do you hold her hand in yours and soberly tell her, “No hitting Mommy”? You are teaching your child how to treat you.

A couple of days ago I asked a child of mine to do a task and the child agreed, but with an edgy manner of speaking. I looked at that child for about a minute without saying anything.  The somewhat abashed response to me after a pause was, “Okay, that was obnoxious – I’m sorry. Yes, I can do what you asked me to do.”

What was my nonverbal message when I looked intently at this child? That although I was choosing not to respond verbally, I wasn’t oblivious to the inappropriate tone that had just been used. Yes, it’s definitely a more subtle response!  If the child was younger and might not have realized on his own that his response was out of line, I could have let him know: “You know, that sounded disrespectful. Can you say what you want in a more respectful way?”

This is just as true with people who aren’t related to us. If someone initiates a conversation topic that we would rather not participate in, we can direct the conversation to a different subject rather than feel forced to participate because we want to be ‘nice’. If someone speaks to us disrespectfully, we do not have to stay in that interaction to be ‘nice’. We teach others how to treat us.

One of my kids once opened the door for a neighbor since I was in the middle of reading to a younger child. I had never spoken to this neighbor before and he wasn’t a warm and friendly kind of person. Before I even had a chance to get up from the couch and without waiting for an invitation, he walked right into the center of my living room.  I felt my space had been invaded, and I told him to please wait next to the door and I would speak to him there. He got angry and threatened not to talk to me or help with the issue that he had come to speak about (the damage a leak from his home was causing to us) but I didn’t back down.  My home is my space and no stranger is welcome to come marching in as if he owns the place. My home, my terms.

treat others how to treat y

You can set the terms of the interactions that you participate in.  We worry too much about being nice to others, while not considering that it’s extremely not nice to ignore your own needs and subjugate them to the needs of others.

maya[1]Every day we have choices: what to respond to, when to respond, how to respond – and it really all begins with, how do we feel worthy of being treated? Do we honor our own needs, our own time, our own preferences?  We communicate this in so many ways and we’re not even aware that we’re communicating that! But our kids are watching us and have a very good sense of what we we really care about.

Avivah

A Story of Hope and Love

Someone shared this wonderful story with me of an adoptive father of 12 children, most of whom have Trisomy 21.  What in the world compelled this couple to travel across the world and adopt these abandoned children from various countries?

If I had read this story before I had a child with Trisomy 21 I simply couldn’t have related to it at all.  I had no part of me that could understand people who did things like that, and could only assume they were on a completely different elevated plane from myself.  I mean, why make your life harder?

 

Rafael, 9 months

Rafael, 9 months

I have a really different perspective now that we have our two treasures with T21.  Since we brought Rafael home I know that people sometimes put me on that elevated plane that I used to put others on, but from where I’m standing, it looks completely different.  It isn’t about picking up a heavy burden and suffering; the reality is so, so much love and blessing and gratitude and faith for all of our beautiful children.

Here’s the story I’m referring to – take a couple of minutes now to go and read it!  A Story of Hope and Love

I can’t even try to guess about seemingly negative things like why the author’s sister suffered as she did, but everyone can clearly see that it led to something very beautiful all these years later – his huge family of children with special needs – as a result of her being in his life.

img_1219

Ds8 told me a few days ago, “I’m glad that Rafael has Down syndrome.  Because if he didn’t, he wouldn’t be part of our family.”  I’ve never articulated it in that way to our children, but he’s right – for us Down syndrome was the positive ‘hook’ that brought Rafael into our family!

Avivah

sadness

Making room for a child’s sadness

At our dinner table, we have a family tradition in which each person shares three things that he is grateful and appreciative for that happened in his day. This began because I wanted to teach my children to look for the good in their lives on a regular basis, and also to help all of us to share daily the things of import that happened for us that day.

It also leads to opportunities for meaningful discussion of topics.

Recently ds11 shared that he was grateful that he was able to bury a dead bird that he found on the sidewalk. I told him that even though that bird was no longer alive, it was a kindness for the bird and perhaps there’s some part of the bird that recognizes what was done for it.

I shared a short reading from the book The Light Between Us, in which the author describes doing an intuitive reading for a couple who had rescued many animals. She described the outpouring of gratitude ‘on the other side’ that was directed toward them.
I explained to my children that even animals have energetic prints that continue to exist after they die. Every act of kindness, even to the smallest creature, creates a positive energy in the world even though we can’t see it.

It’s an important message for us all – that our acts of kindness leave an effect even after the situation seemingly is in the past. As I was reading to them, I thought that it was particularly of value to ds9 to hear this.

Three weeks earlier he was given a tiny newborn chick in a shoe box by a neighbor who found it on the street. I cautioned him that it’s very, very hard to save a bird that small. But he poured himself into it, feeding it with a dropper throughout the day. By the end of the next day, the little bird was peeping and walking around. He had literally resuscitated this tiny bird and it was so exciting and moving for him.

He went to sleep happy that the chick had clearly turned a corner….and then he woke up in the morning to a dead baby bird.

He threw the bird in the garbage as if he didn’t care, but it was obvious it was a cover for how deeply upset he was.

Kids need to have a space to have their feelings, and so I opened up a conversation with him. The goal was NOT for me to tell him why it wasn’t so bad, he shouldn’t be sad, it’s just a bird, he’ll have another bird or another positive experience in the future. You know, all those things we parents say when faced with the pain of a child that we want to just wipe away. It’s hard to see a child in pain and let them feel their pain without minimizing it.

But they have to have the opportunity to feel the pain, deal with it and move through it. This is part of what matures a person emotionally.

As we spoke, he asked me with tears in his eyes why the bird died. I realized he wasn’t asking me for a physical explanation. He wanted to know a deeper reason. And I didn’t have an answer that made him feel cheerful and okay with it.  I told him that obviously this bird was meant to live only a short time and that he was part of making that bird’s path more pleasant. Then I sat with him quietly and gave him space to process that.

And even though that felt very inadequate to me – I still had that desire to say just the right thing that would wipe away his pain – it was enough.  So often, what our kids need is permission and space to feel their feelings.  And once they have that, they can move on.

Avivah

o and a with rafael, 8 months

A couple on a mission to convince parents to keep their newborns with Down syndrome

Our social worker called tonight to remind me about a request she had made of me at her last visit.  The social worker who did the placement for Rafael with our family is moving on to another position after many years doing this work.  We were asked to send a picture and note for the placement social worker; they will be making a book from as many children that she placed as possible.

It was late when I remembered about this but luckily dh hadn’t yet gone to sleep for the night.  Rafael was just waking up so even though the timing wasn’t ideal since he was drowsy, we managed to get a few quick pics.  Rafael (now 8 months old) is such a good sport – it doesn’t matter how tired he is or if he’s just opening his eyes from a nap – if someone he loves is giving him attention, he’s a happy baby!

o and a with rafael, 8 months

o and a with rafael, 8 months 2

o and a with rafael, 8 months 3

o and a with rafael, 8 months 4

o and a with rafael, 8 months 5

o and a with rafael, 8 months 6

Deliciousness!!

I haven’t really written much about our little treasure.  I don’t know if you could find many babies who get as much love and attention as this cutie – our kids don’t get tired of telling me how much cuter he’s gotten since the day before- and he returns their love in full with his heartfelt smiles and laughter.

Two blog readers sent me the following clip of a couple who adopted a baby girl with Trisomy 21 and have made it their mission to convince parents considering giving up babies with T21 to keep them.  I was in touch with the husband both with Baby M last September and with Rafael seven months ago. With Baby M, he was the direct liason with her birth parents; with Rafael, to access some of his connections to help cut through the legal paperwork that Rafael had been caught in.

The clip is in Hebrew, but for those of you who understand this, it’s very moving.  I watched it several times and felt choked up each time, especially when the woman describes going to the hospital for this abandoned baby they had heard about who was going to be having major surgery. With no legal standing, nothing but a desire to help this baby who had no one, she told the staff she was the mother, and then as soon as she held the baby told her, “Tamar, Tamar, Mommy is here, and and Mommy promises that she’s never going to leave you. ”

Unfortunately I couldn’t figure out how to link the video directly, so you’ll have to click this link and then click on the video.  Moving video of couple that adopted baby with T21

The reality remains that too many babies with Down syndrome are given up every year.  Not because the parents aren’t capable of raising them but because of advice or suggestions they are given, the fears they have, the stigmas they may feel…. Accurate information goes a long way in encouraging parents and dispelling the fears that lead to giving babies up.

After Yirmi was born five years ago, I anticipated that I would go to hospitals and speak to parents who had gotten the diagnosis of T21, particularly those who were considering giving up their babies. Despite my willingness and even signing up to be on the roster of parents called in this situation, I was never contacted.  Though I’ve spoken to parents of infants and children with T21 and supported them in different ways, reaching out to parents in the hospital obviously wasn’t meant to be my focus.  It’s touching to see the passion and commitment of this couple for whom this is their mission.

Avivah

don't give up

What our aliyah journey has taught me – don’t give up on your vision!

Can you believe that this week marks six years since we moved to Israel?!?

Moving to a new country with nine kids (ages 2 – 18) wasn’t an easy thing to do. Moving to a part of the country where there was very little support for new immigrants made it even harder. I’m not going to belabor the difficulties.  I’ll just say that it was really challenging.

Moving 3.5 years later to a different city in an entirely different part of the country was yet another new beginning to be navigated, and starting over is always hard.  I have to admit that I had a bias against living in an Anglo enclave, which is why I didn’t consider moving to Ramat Beit Shemesh directly from the US.  I’m glad to have completely released that negative thinking and am very, very happy to be living here now.

A couple of days ago, two different sons shared with me their unsolicited thoughts.  One said, “It was a really good move to RBS.  It seems everyone is happy and keeps getting happier.”  The younger one said, “Everything just keeps getting better and better!”

We went against almost all the standard advice that is given to those considering making aliyah (and I’m not recommending anyone do what we did!), but we are SO grateful to be making our lives here.

Our kids are happy, they have friends, they have no longings for the US.  My husband and I both do work that we enjoy, we live in a home that we enjoy, in a community that we enjoy. Does so much good news sound boring?

The path to get here wasn’t boring! It took time to get where we are now along with plenty of bumps in the road.  (If you’ve read my blog for long enough, you know about some of these challenges.) There were lots of frustrations and difficulties that included intense financial stress, struggling to figure out where we fit religiously and socially, determining what educational paths were right for our children, dealing with the medical system and in general, starting over in every way. The starting over piece is HUGE – after years of building a life, you move to a new country and start all over as a new immigrant.  It’s not fun.

But it was worth it.  It was really, really worth it.  While I’ve had an attitude of ‘bloom where you’re planted’ in each place that I’ve lived and appreciated everywhere I’ve been, I’m happier now than I’ve ever been.  And I think my family members would say the same thing.

So my message is: when times are tough, just keep going forward.  If you keep taking the next right step, eventually it will lead you where you want to go.  It may take more time than you want it to take, and you’ll definitely have surprises or detours along the way.  But if you’ve thought about your course of action and determined that moving forward is the best option for you, then don’t give up on yourself and your vision.

Avivah

y - swim 1

My tips for helping the late talking child

>>From your vantage point of five years into this, I’d love to hear what you feel are the best “tools” to help children with apraxia. I know you used Gemiini and flash cards. Beyond the obvious emotional support we offer to our children, I’m looking for practical advice. Thank you!<<

I’m happy to share what has been helpful for us!

First of all, even if your child isn’t speaking much, assume he understands. If he doesn’t understand yet, he’ll understand more as you give him lots of verbal input, filling his day with words and concepts. Building his receptive language reservoir is a precursor to his ability to express himself. Eventually the expressive ability will come.

Keep in mind that communication of any sort is the building block upon which speech is built. Don’t think because it’s not speech that it’s irrelevant to the question of how to deal with apraxia – communication skills are vital.

BUILDING RECEPTIVE LANGUAGE:

– Flashcards – The most obviously visual way to build receptive language is by using flashcards of words and pictures. (At some point I wrote about using the Brillkids program, which is bascially online flashcards and words – it’s a great program and I only stopped using it when I got a new computer and didn’t reload the program onto it.) Yirmi now repeats each word after me when we do flashcards so it’s become an expressive speech support at this point as well.

We also read lots of books.

Actively engage your child in your world. Talk to him about what you see, give him space to have a turn talking, even when he doesn’t yet talk. Pay attention to his cues and respond to them. When your child sees that his attempts at communication are effective, he will continue to try to communicate. Like everything else, the more he practices communicating, the better he will get.

– Encourage verbal expression through play and constant interactions. I got the book Play to Talk, by Dr. James McDonald when Yirmi was an infant. I loved that Dr. McDonald (whose work spans decades and is an amazing advocate for late talking kids and their families) says that parents are the answer to a late talking child’s challenges, and that the home is the best place to learn and practice communication. It’s a big shift away from the prevalent attitude that paid professionals are the answer. His website is a great resource, as are his books. On his webpage about children with Down syndrome (and this is relevant to any late talker), he writes:

“After all these years, I am confident that parents can help children with Down syndrome give and get a great deal in life if they are willing to do a few simple but often difficult things:

  • play in the child’s world habitually
  • make children enjoyable play partners before they are obedient students
  • don’t worry about school language before children have a good vocabulary for daily natural communication
  • be very careful not to expect too little (by doing too much for children) or to expect too much (by setting up impossible jobs)
  • pay more attention to positive little steps than to things you may think are mistakes
  • act and communicate in ways children can do (matching)
  • interact back and forth throughout the day
  • be sure children are giving to you as much as you are giving to them”

I learned from Dr. McDonald to go into Yirmi’s world, not just to try to pull him into mine. That includes imitating the sounds he makes rather than only expecting him to imitate the words that I say. Also, I learned to simplify my sentences to match his level of expression to encourage him to respond; it actively pulled him into verbal interactions with us.

– Mediate the world for your child – Mediation is the heart of the methodology taught at the world famous Feuerstein Institute in Jerusalem. It was there that one of their facilitators told me that most people have to be trained to learn this, but that a small percentage of the population are natural mediators – and she informed me I’m one of them! For that reason it’s really hard for me to explain mediation, because it seems like pointing out the obvious to describe it.

Basically, mediation is to consciously facilitate your child’s exposure to the world around him. Rather than assume he will make the connections on his own, mediation is when you consciously facilitate your child’s exposure to the world around him.
Here’s a nice video that might give a bit more insight into mediation and the Feuerstein approach: Looking Up on Down Feuerstein video

Sign language – I taught Yirmi sign language when he was a young toddler, knowing that language was likely to be a challenge. This has been a hugely important tool for him, since he’s been able to express himself before he had the verbal ability to do so. As his speech has improved and become more clear, he’s dropped the signing. If someone doesn’t understand what he says verbally, he’ll repeat himself by saying the word and signing at the same time. Signing Times videos were a great resource. I also used Signing Savvy to look up words that I wanted to teach him – this is a site with lots of short videos demonstrating hundreds of signs. Signing Savvy was a resource for me to learn the signs, not a video to show my son.

Gemiini Educational System– I’ve been using Gemiini regularly (I aim for a daily basis) for Yirmi since he was 2.5; we were one of the early families using it for a child with Trisomy 21. At that point it was primarily being marketed for kids with autism. It’s since become a well-known resource in the T21 world.

Gemiini is a web based program that uses a video modeling approach and integrates a number of speech therapy techniques. There are lots of amazing testimonials, including one woman who called me after a blog reader read about us using Gemiini and put her in touch with me. She had a 9 year old daughter with T21 who was completely nonverbal – withing two weeks of starting Gemiini, she began speaking!

Yirmi wasn’t one of the kids who had an amazing jump in speech right away. Actually, it took about a year and a half until we started to get speech – we seemed to be on the very slow track. I’ve already told you my belief that it’s important to keep my eye on the end goal and not get discouraged when the progress in front of me seems slow or doesn’t seem to be happening at all. I never asked about the severity of his apraxia but I can assume it was significant, based on how long it took us to see changes. But we knew changes were happening.

The first thing we noticed is that he began to move his mouth as he watched, trying to imitate the shape of the mouth he was seeing on the screen. As a 2.5 year old, he had never done that. He had only a few vowel sounds that he could make when he started, but eventually he started imitating other sounds.

To sum up a response by Laura Kashbar, creator of Gemiini to the question of how do you know if Gemiini is having an effect: “1) Receptive language improves – is your child understanding more? 2) Gemiini is switching the focus from a daydream state/passive network into active network; when waking up from a daydream there are some things that will happen: a) Eye contact, b) child seems more with it, not in his own world so much, c) will pay attention to sounds when in the past he ignored it, d) get feeling from him that he’s more present. 3) Will see new sounds, new babbling, be more aware of mouth. 4) Fine motor skills increase – great indicators of neurological changes. 5) Gross motor improves dramatically. All of these come together over time to get student going where he needs to go. There’s a global improvement that happens, it doesn’t start with expressive language – it starts with all these other things.”

PHYSICAL DEVELOPMENT:

There’s a very significant connection between speech development and physical stimulation. Everything in the body is connected and the better the body works, the better the mind works. Exercise creates neurogenesis. Of particular importance are activities that integrate cross patterning movement (the hand and feet working in alternate motions).

– Walking/running – This is the ideal cross patterning activity. A saying coined by the Institutes for the Achievement of Human Potential is “Two miles of walking equals talking.” (For a young child, the focus would be on crawling and creeping, which works on lower motor levels of the brain. Don’t rush this stage in order to get to walking – crawling is super important developmentally.)

I’ve been trying to encourage walking for Yirmi when we need to go somewhere, even though I can get where I need to go much, much more quickly if I stick him in a stroller or carry him. This summer he’s been attending day camp (his first time ever!!) and we’ve been starting our day by walking to the bus stop and then from the bus stop to the camp. There are a lot of distractions on the way and this short walk from the bus to camp takes a long time. I try to leave extra time in my schedule whenever I take Yirmi anywhere because I want to encourage him to walk and at the same time, I don’t want to be impatient or feel pressured to get somewhere by a certain time.

He isn’t yet consistently walking very far but stamina is built little by little. Like everything else, we’ll continue to support him and with time his ability will increase.

– Trampoline- In a Facebook group for parents of children with T21, a parent shared that her speech therapist recommended jumping on a trampoline to benefit her son’s speech. That suggestion resonated with me as it matches my approach to therapy and development – to do it in a way that is fun and a natural part of your daily life. He loves the trampoline, and so does every else in the family! (There are lots of great health benefits to using a trampoline as well, like stimulating the lymph system,building immunity and increasing muscle strength – more benefits here.)

Jumping on the trampoline - fun and great for speech!

Jumping on the trampoline – fun and great for speech!

Yirmi quickly learned to do tricks on the trampoline. This physical acuity has extended to when he’s on the ground – he started regularly jumping with both feet within a week of using the trampoline, and shows off his somersaults whenever we have guests!

– Swimming – we put Yirmi in swimming lessons a couple of months ago. He was really scared to do more than sit on the second stair at the public pool and I realized it would take many months to build even basic comfort in the pool at that short weekly lesson. So soon after that I bought an above ground pool to give him a chance to practice daily and build his comfort in the water. He and our other boys now spend hours every day in the pool and his comfort in the water dramatically increased in a very short time.

y - swim 4

y - swim 3

He imitates what he sees his brothers doing, and has learned to keep his face in the water. He can also stay underwater for up to six seconds, simultaneously using the arm motions like those used when doing the breaststroke.

y - swim 2

y - swim 1

To continue to support Yirmi’s physical development, I’m planning to build (or more accurately, for my kids to build :)) a pergola in our yard where we can hang swings. I’m hoping we can integrate monkey bars into the frame, since brachiation is a wonderful therapeutic activity (and of course, fun!).

I’ve been wanting to do this since the end of last summer but ds18 has been at school and not available for a long enough period of time to spearhead this project. He graduated high school three weeks ago and the next day began his job as head counselor for a local camp – now that he’s finished that job, he said he’ll make time to start this project in the next week or two.

Nutrition- we don’t give Yirmi gluten or dairy, both of which are difficult to digest and clog the digestive system. The digestive system/gut fuction is intrinsically linked to brain function. A mind that is clogged up doesn’t work as well. He continues to eat a fairly clean diet – minimal processed foods, mostly proteins, vegetables, fruits, and whole grains/legumes.

Reflex integration – I am very interested in doing reflex integration work with Yirmi, and after a lot of research on the topic chose a specific cold laser protocol. However, when I attempted to purchase the QRI cold laser this past winter, due to a technical problem with order processing we had to drop the idea for the time being. If at some point someone will be able to bring it for us from the US, we’ll try purchasing it again! Parents have had great results from the laser but obviously I don’t have a personal testimonial on that.

How is Yirmi’s speech at this point, as a newly turned five year old? He began saying words when he was four. He’s now speaking sentences of up to seven words (though it’s still hard for non-family members to understand him), mostly words of one to two syllables. His speech has accelerated very quickly and seemingly out of the blue, but it hasn’t been out of nowhere – we’ve been supporting his speech in these various ways for years.

Avivah

y trampoline 2

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

snychronicity

Does history repeat itself? A strange coincidence? Or something else?

My husband’s parents flew in from the US for the wedding and we enjoyed spending time with them this weekend!

We’ve been wondering if our branch of the family is related to other Werners and got into a discussion about my husband’s grandparents generation.

We learned for the first time that my husband’s great aunt and uncle had a child with Trisomy 21 who was institutionalized at birth, which tragically was the norm at that time.  I still couldn’t help wincing when the story was shared.

And then we learned something that kind of made us all shiver.

My father -in-law had an aunt and uncle who couldn’t have children.  Someone who was very ill asked them to raise her little son as their own when she died.  Since his mother had requested that her son be raised with her last name, he was raised in every way as their son but he wasn’t legally a Werner.

When my father-in-law shared this story, and then said the birth name of the child raised by the Werners three generations ago, my family members all looked at each other.  “What did you say his last name was?” someone asked.  “XYZ”, said my father in law, and spelled it out.

The same last name of our Rafael.  The same spelling.  A last name I heard for the first time when we were shown his file.  Not a common name at all.

And Werner isn’t a very common name either.

And so three generations ago, the Werners raised a little boy as their own, but keeping his birth name of XYZ.  And right now, the Werners are raising a little boy as their own, but keeping the same birth name of XYZ.

I can’t tell you what the significance of that is but it feels like more than just coincidence, don’t you think?

Avivah

Self-care-300x300[1]

Self-care – you can’t afford not to do it!

Yesterday a very busy mother of four young children who is longing for a break asked me, “How do you make time for yourself?”

I told her, you just have to do it!

So much easier said than done.

For many years, I minimized my need for self-time.  Sure, I would relax with a book or exercise at home with a dvd, but I didn’t really go too far beyond that.  Friends who wanted to meet me for coffee would be met instead with my flat response: “I can’t do it,” “It’s not realistic, I’ve got the kids home all the time.”

But do you know what?  I didn’t even stop to consider how to make that happen – I could have done it if it was really important to me.  But instead I right away assumed it was impossible. When it came to making time for myself (outside of home), with few exceptions I told myself I didn’t need it, that it was too much trouble to find a babysitter, too expensive or exhausting to make arrangements.

Well.

Over the last year I have been actively embracing self-care and it is a pretty darned wonderful thing to expand the ways that I enjoy my life!  After so many years of taking care of someone else and putting my own needs lower down on the list, I’m putting myself right at the top.  And I highly recommend it!

Taking more time for yourself begins with seeing it as an important and valuable use of your time.

This morning I went on a two hour nature outing with a small group of women to a park about a 15 minute walk away.  Later this week I’ll be going on a sunrise hike (I love these – this will only be the third one I’ve done in the last year – I get exercise, social connection, time out in nature and am home by 7 am, without anyone even realizing I was gone!)  Next week I’ll be going away for two days and one night to northern Israel for a women’s getaway. It sounds kind of decadent, doesn’t it?

The morning after the wedding, do you know where I was?  On a hike to a local forest.  When I arrived the organizer looked at me in shock and said, “Even though you said you were coming, I didn’t believe you would actually be here!”  I obviously didn’t get home very early the night before. :) I had a ridiculously full day that day, that included taking dd16 to Jerusalem for her seminary interview in the early afternoon, returning home, then turning right back around with the rest of my family and traveling to Jerusalem for that night’s sheva brachos. Does it seem I was making my day too full and stressful by going on a hike in the morning?

I made this commitment to myself before the interview was scheduled, and I decided I would go because it was important to me especially with the busyness of the wedding season to make time for myself.  I would have cancelled my appointment with my daughter and told the seminary administration I would have come a week later before I would have cancelled this time for myself.  Hiking in the woods and later sitting quietly alone for almost a half hour in the forest while the other women continued on a different trail was spiritually and mentally renewing for me.

Honestly, I’ve had to work through my mixed feelings about all of this.  I’ve been moving out of my comfort zone in this arena for a while and continue to expand the boundaries of how I nurture myself. Because I did so little self care in this way for so long, sometimes by contrast what I do now feels selfish and self-indulgent.  That’s not reality, it’s just my mind getting in the way of letting myself feel good about taking care of me.

self-care

We parents deserve to take time to care for ourselves.  We NEED to take time for ourselves. We are worthy of treating ourselves with kindness and compassion, to create and embrace opportunities to nurture those parts of ourselves that we tend to set aside when the responsibilities of life take up so much space.

When we become parents we don’t stop being the people we were until then – and once we hammer that into our own consciousness, we then have a great opportunity to model this lesson for our children.

The more I recharge myself, the more emotionally present I am for myself and for others.  Really.

Can you afford NOT to take time to recharge yourself?  Even if you don’t feel you deserve to take time for yourself, wouldn’t your children benefit from an energized, upbeat mother who values herself?

Learning to care for and love yourself the way you care for and love your children – the new horizon!

Avivah