Avivah Werner

Category: Parenting

  • The courage to say hard things

    Quite some time ago, someone was talking to me about one of her children and said something oblique that led me to understand her daughter had been molested.  It wasn’t my place to inquire and I don’t know the specifics but my impression was it was an early level by someone who was grooming her.  I wasn’t sure from the way the mother was speaking if she realized the significance of what she was saying.  In a later conversation I came to feel that although the mother knew what had happened, she wasn’t understanding how central this was to the issues her daughter was having.   As a result, she wasn’t taking steps to protect her daughter from a situation that was developing because of the lack of this awareness.

    This put me in an uncomfortable situation because it’s not fun to bring to someone’s awareness something so sensitive, especially when your opinion isn’t being directly asked for – she was asking for my feedback on something that she didn’t think was related.  I knew she valued my opinion but still…to call it a touchy topic is a big understatement.   But when there’s a child at risk, you can’t just stand by the side and say, ‘tsk, tsk’ later on when something happens.  I told her it seems there is a potential perpetrator in her daughter’s life  and that her daughter was at a very high risk of being sexually abused unless steps are taken to protect her.   Thankfully she was receptive.

    I’m bringing this up because I was thinking about why so often good people see something wrong and stand by and do nothing – including me.  We don’t like being uncomfortable so usually we ignore things we see rather than take action, or blame the victim because they made us uncomfortable and it’s easier to blame them than to exert ourselves to actually do something to help.

    I was concerned about a different situation and for months thought about how to approach the mother without making her defensive.  I told myself that she probably wouldn’t listen to me, that she didn’t have the resources to change the situation, that she was well-intended, that I was imagining things, that the situation wasn’t really as bad as I thought, there were other people closer to them who would say something, the school would get involved.  Basically, I made excuses to avoid doing anything that would make me and her parents uncomfortable.

    Even though I told myself this, I knew I was making excuses and making the parents’ emotions more important than the child’s.  I was afraid this would be unpleasant for the mother to hear and I didn’t want to be the messenger.  I saw a child who was being impacted by a situation and I wasn’t doing anything to help because I was more worried about what her mother would think of me than about what her child needed, and this lack of personal integrity weighed on me so heavily it was like a physical weight.

    I tried to think of ways to help from outside the situation  but everything required me to speak to the mother and come up with solutions together with her.  Finally I asked the mother if we could meet.  I really don’t think conversations like this should be had in any way except in person, it’s just too delicate.  She couldn’t.  I asked if we could speak by phone.  She wanted to know about what.  In an email I very briefly shared my concerns.  She emailed back and said the situation is being taken care of and to never mention this to her again.

    Sometimes you can help and sometimes you can’t.  But I don’t want to let an unpleasant response keep me from having the courage to step up the next time I have the ability to help.  Usually being brave requires facing things that we don’t want to face.  Sometimes being brave is being willing to hear hard things.  As unpleasant as facing our fears is, it’s still much easier than living with the results of not listening to our conscience.

    Avivah

  • Sharing your compliments in writing

    Recently our rabbi and rebbetzin came from the US for a visit, and there was a get together on Saturday evening for former members of their shul to connect with them.  I really, really, really wanted to be there.  But there’s no way to get there from the northern part of the country via public transportation in time, so we (once again – they’ve done this every year) had to pass.  Yes, I felt disappointed and even deprived of something important to me.

    But!  My oldest three kids who are in the country all independently decided they wanted to go.  Ds14 spent Shabbos with dd17 so they’d be able to go together, and ds20 met them after Shabbos was over.  I was so happy when I was sent a picture of the three of them with our rabbi.

    Then the following day I got a lovely email from someone we haven’t seen since she and her family made aliyah six years ago.  She wrote:

    “Your children are AMAZING ambassadors for Mishpachat Werner.
     
    I like them all — EACH — so much. I chatted briefly but substantively with each of them, and remembered why “Werner” means the same thing as “excellent midot.”
     
    I had the pleasure of spending quality time with (one of them). What a remarkable young man! He has the ability to converse candidly and openly with “old wrinklies,” without coming off in any way as if he doing us a favor. He is truly interested in other people, and able to engage completely with whomever he is speaking. If he had any complaints about walking “miles and miles” to his accommodations, he surely doesn’t share them his hosts or us. And THEY also passed on that they were grateful I sent them such a lovely neshama.
     
    Whatever I say isn’t enough. You should just be validated in the knowledge that (we) — who raised good boys — are impressed by the remarkable young people you raised.
     
    Please tell them, when you think it appropriate: “Yalla! The Jewish nation needs leaders like you — so keep working toward your tafkid in Klal Yisrael, for the sake of Hashem’s holy project.” I am certain they have a very important role in leading our people — whatever that looks like for each of them.”

    I’ve been told many nice things about my kids over the years.  They’re genuinely wonderful human beings and I am very blessed to be their mother.  But as nice as those things I’ve been told have been, I remember very few of the specifics of the majority of the comments as time has gone by.  And so I was especially appreciative not just of the comments but that this lovely woman took the time to put them into writing, giving me an opportunity to look back on them in the future and be reminded of exactly what she said.
    That same Shabbos that these kids were in Jerusalem so they could attend the Saturday night gathering, we hosted three seminary girls.  One of them was one of my older girls first friends in the city in which we lived at the time – we met her when she was seven.  It was so beautiful to see the  young lady she’s grown up to be.  I was planning to call her mother to share these thoughts with her, and then got the above email.  Since I appreciated something in writing so much, I decided to write to her instead. It takes about one minute to tell someone verbally something nice and hopefully they’ll remember it but the conversation moves on and you don’t dwell on it.  But you can read and reread a written message as much as you want.

    So the moral of the story is, if you have something nice to tell someone, tell them!  And if you can share your special compliments in a way that they can save them to savor for another time, it’s an additional gift.

    Avivah

  • Recognize and value your needs – stop thinking everyone else matters more!

    Today I got a call from a young mother, and as soon as I heard her voice, I realized she was working hard to keep herself together.  I was in the middle of cooking for Shabbos so I asked my kids to keep an eye on the things on the stove and in the oven and told them I’d need some time and privacy to speak to her.  Then we started to talk.

    She started to cry within a few seconds.  It all spilled out – she’s due to give birth in two days, her doula just cancelled on her which means she’ll have to go to the hospital on her own to give birth since her husband will need to stay home with their two year old.  Her oven isn’t working and the repair man wasn’t going to be arriving until later in the day, leaving her without time to cook for Shabbos.  And her city is having some problem with the water quality so everyone needs to boil all their water or buy it; her husband doesn’t want to spend the money on bottled water so she needed to boil a large quantity of water to last for all of Shabbos.  She’s very pregnant and very stressed and very overwhelmed.

    The first thing I said was that the most important thing is to preserve her physical and emotional strength so she can go into labor feeling good.  That means simplify everything as much as possible.   I gave her some practical suggestions of how to cook a simple one pot meal so the oven not working wouldn’t be an issue and so she wouldn’t spend so much effort cooking a variety of dishes she didn’t have energy to prepare.  She was like, really, you can do that?  Really.

    Next, the doula.  We talked about options for this; she has a backup doula and can meet her at the hospital.  (She lives in a different city and wouldn’t be able to come to her home on Shabbos to support her in early labor.)  She said her friends had offered to watch their toddler when she went into labor so her husband go with her, but she thought it would be too hard for her child and it would be best if her husband stayed with their little boy.  There’s a lot we moms give up for our kids and often it’s  necessary, but as much as I value doing what we can to give our kids a feeling of security, this wasn’t the right time for that to be the issue of overriding importance.   A laboring mother’s needs take priority.

    But of course it’s important for her son to be in a safe and loving environment where he’ll feel good.  We discussed which people in her life her son felt most comfortable with, and she decided on one friend who has a child the same age he’s very friendly and said she’d call as soon as we finished talking to make those arrangements.  

    Next – the water situation.  We women put so many demands on ourselves and surprise, surprise, everyone around us assumes that’s okay and they make demands as well.  The problem is even people who care can’t read our insides to realize when we’re overstretching to do all that we’re already doing.  Husbands, especially young husbands like hers, don’t understand what’s involved in being pregnant and taking care of a young child and doing all she was responsible for.  We’ve got to tell them and to do that we have to recognize our needs and feel they’re valuable.  I’m sure he had no idea that his request that she boil the water would cause his wife so much stress.  I suggested she ask for his help – let him know that it’s too much for her (without drama and accusation) and ask him to please take care of it.  Maybe once he has to do it himself he’ll understand the work involved and decide it’s worth spending the money.  Or maybe he’ll boil it all himself.  Either way it will get done.

    In all of these cases, the real issue was that she was giving priority to what others wanted and needed from her more than she was recognizing and validating her needs.  Don’t we all do this sometimes?  Or maybe more than sometimes?!

    What I offered her was recognition that her needs were legitimate and important, and then helped her find practical solutions to address them.  Inside our own heads we can lose perspective and sometimes things are obvious to someone outside of the situation.  Once we get clarity on what we really need, it’s a lot easier to find solutions that work.

    Avivah

  • The truth about being strong – it’s not always how it seems

    This week marks a month since I was hit by a car…..it’s been a very intense month.

    The first week was physically difficult but that has gotten much better.  Ds4 and I went to the osteopath a couple of weeks ago.  She examined him and found the muscles on one side of his body were knotted throughout the entire side – she had me feel it and even my inexperienced hands could tell what she was talking about.  She said she never sees this in a child other than when there has been an accident of some sort or when there is scoliosis and then it’s only with kids who are much older than him.  She worked on him and told me not to worry, that he won’t have any lasting damage from the accident.  He’s doing great – though when we cross the street he often tells me when we get to the other side that the car waiting at the crosswalk right then almost hit us; that’s his feeling and there’s obviously still anxiety about crossing streets but this is getting less.

    Then she worked on me and asked me if I was having headaches and dizziness and if that was something new since the accident.  I told her I was and it was (though I hadn’t paid much attention to it until she asked), and she said from the state of my neck it was impossible that I wouldn’t be.  She had initially said since my body went through so much trauma that she wasn’t going to do any physical manipulations because they are a sort of trauma as well but when it came to my neck, she wasn’t able to release the muscles without manipulating.  She warned me I might have a healing response afterward and she was right; for at least 24 hours I had a horrible non-stop headache.  But thankfully I  haven’t had any headaches and the dizziness has been minimal since then.

    However, I’ve started having breathing difficulties that are atypical for me, and I’ve been really tired.  Really, really tired.  Like at 11 in the morning I have to take a nap.  Also not typical for me.  This began the day after the accident.  The regular doctor said there’s no connection but I’m positive there is and here’s in short what I think happened.  The adrenal glands are what handles stress in the body and when they’re weak or stressed, your immune system drops (when this becomes a chronic situation, it’s adrenal fatigue).  My adrenals were needing significant support before the accident and I believe that this level of physical and emotional stress pushed my adrenals beyond their ability to cope, like the proverbial straw that broke the camel’s back.  Asthma and chronic fatigue syndrome are both direct results of later stage adrenal fatigue.

    Fortunately, I began treating my adrenals the week before the accident and and  am continuing to work on this.  Maybe I’ll talk more about the boatload of vitamins I’m taking daily as part of my healing protocol another time.  Healing the adrenals is a long, long process and this sudden worsening of my adrenal symptoms is something that will take much longer to spring back from than the physical injuries alone.  But it’s good to understand what’s happening and I’m optimistic that my adrenals can heal and I’ll get back to myself.

    Emotionally it’s been a difficult month.  It was as if my feeling of isolation regarding lack of support through all the difficulties we’ve gone through in the last two years was triggered by this accident and started flooding out at once.  Good thing I was taking so many emotion balancing vitamins!  This hasn’t been a fun process to say the least but it’s a learning process.

    Today I was told by an alternative physician who has supported many people through difficult situations through the years, that she’s never seen someone go through so many troubles who remained as calm and positive as I have, and she thinks I’m the bravest person she ever met.  I recently read something by a pediatrician with many years of practice and she wrote that out of all the traumas she’s seen parents go through, the absolute worst suffering she’s ever seen is one of the situations we’ve gone through.

    I have a knee jerk reaction to reject statements like these.  I don’t see my life like this; things have felt hard and sometimes overwhelmingly hard, but even at the worst moments it never seemed worse than what many other people go through.  By the time you’re a parent at my stage of life, just about all of us have experienced really serious challenges of some sort and when I hear what others have gone through, I’m so grateful my challenges are what they are and not worse.  I’m fortunate that so many people have confided in me about their difficulties so I don’t have to theorize about this.   I’m not a complainer – or at least I try not to be – and I tend to downplay what life has been like except to say there have been difficulties.  I have so much to be grateful for – my amazing husband and children are at the top of the list – and I don’t want to focus on what hasn’t been good.  But since the accident, part of my healing process is to allow myself to say that yes, we’ve gone through really hard stuff, one hard thing on top of another and another, all piled on top of each other; each one of those things being situations that people seriously struggle with when it’s only one thing.  When I stand back and look at it through someone else’s eyes I do kind of wonder how we’ve managed.

    I have a resistance to being told how strong I am.  I know this is always intended in a positive way but sometimes I have a sense it’s almost like implying that things are easy for me to get through because I have amazing coping skills.  No, it’s not easy for me.  I earned whatever coping skills I have through being forced to develop them.  I’m grateful – beyond grateful – that I and my family have gotten through so many tough things without falling apart.  Sometimes I feel conscious of being an emotionally strong person.  But with equal honesty I can admit that often I feel weak and scared and powerless.  In spite of that weakness or maybe because of it, God has been very good to me and He somehow gives me what I need to keep going so I can keep putting one foot in front of the other.

    So when this physician today continued and said I seem to have a lot of inner quiet and faith, she touched on the real answer.  I don’t have so much inner calm and I don’t have so much faith, but whatever faith I have enables me to seem as if I have inner calm. 🙂  Obviously I need these constant reminders about Who is really in charge and to let go and trust Him to take care of me or I wouldn’t be getting them; I just have to remember that on a daily basis when things aren’t in crisis mode and then I’ll be in good shape!

    Avivah

  • ‘Read with your children, not to them’

    Today is Day 30 of 31 for 21.

    Sometimes I read studies that come out and I almost shake my head that something so intuitive had to be scientifically proven.  The one I’m sharing today is like that, but it’s valuable anyway as a reinforcer for all you parents who read with your kids and involve them in the story- in short, you’re doing a really good thing for them!

    “Research has found that reading with young children and engaging them can make a positive impact on the child’s future and their family.”  Here’s the synopsis of the study here.

    Avivah

  • Yirmiyahu’s privacy on blog

    Today is Day 28 of 31 for 21.

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    A reader once asked why I am so open about Yirmiyahu on my blog and at what point this will change in order to respect his privacy.

    When Yirmiyahu was diagnosed with Trisomy 21, there was no question to me that we’d be upfront and open with everyone from the very beginning.  The two week period after his birth was hard for me primarily because we were waiting for results of genetic testing before sharing with others, and I wanted to be able to talk about it right away.  Things become shameful when we hide them and act as if something is wrong, and while being born with a genetic difference is unusual, it’s not something to hide.  It’s just how it is.

    I don’t refer to any of my kids by name on the blog, and it was a ‘policy’ shift to share Yirmiyahu’s name here after his bris and to continue to use it.  Calling him ‘the baby’ didn’t feel right.  It felt like it was minimizing him, shunting him to the side.  I grappled with this.  I wanted to treat him as equal to our other kids and at the same time, I treated him differently here by writing about him by name.  I asked myself if I was being hypocritical?

    Here’s why I did this: because those with disabilities become invisible in our society.  And to allow him to be like everyone else means that I have to work harder to acknowledge his presence in a world that says that children with T21 are a mistake, something to be ashamed of. That couldn’t be further from my truth.

    Yirmiyahu, almost 16 months
    Yirmiyahu, almost 16 months

    Being a supporter of inclusion and believing that those with disabilities should be supported in living a typical life, I’ve also asked myself if when I write about Yirmiyahu, am I defining him by his diagnosis by talking so openly about T21? Yes, I know he is different and it’s not me mentioning it that makes it so, but maybe it heightens the feeling of difference.  Of maybe if I didn’t mention it, it would be the elephant in the room.

    I don’t know for sure.  These are questions I toss around in my head from time to time.

    IMG_1865

    The biggest reason for writing about our Yirmiyahu is to remove some of the fear and unfamiliarity regarding having child with T21.   It wasn’t that long ago when if I heard someone had a baby with T21, my feeling was pity for them and thankfulness that it wasn’t me.  The idea of having a child who would look and act visibly differently was unpleasant for me.  That was obviously before I knew that there’s so much more the same than different.  Then when I was about four or five months pregnant, I ‘happened’ to read a blog of a mother with a daughter with T21.  About that same time I began having very strong premonitions that my baby was going to have Down syndrome.

    I’m sure Hashem put that blog in my path – it wasn’t at all connected to my life or interests at the time – to shift my perception of having a child with T21 before I was in that situation myself.  Several months later, that made a huge difference in how I responded to the news a  few hours after birth when we were told they suspected our new baby had Down syndrome.  If I was still stuck in my old paradigm predating reading that blog, I have no reason to believe that I wouldn’t have been devastated when hearing the news, responding just as the vast majority of parents respond.  There’s nothing different about me and them except that I was blessed with a paradigm shift before Yirmiyahu was born.

    Loving life!
    Loving life!

    When we change our paradigms, it’s life changing.  Literally.  My decision to write about Yirmiyahu is in order to put a face on Down syndrome – a very cute face 🙂 – and to be part of a positive paradigm shift for some of my readers.

    As far as his privacy, I try not to share anything about my kids that they might later be upset to read when they’re older; that’s my personal guideline.

    Avivah

  • Yirmiyahu’s food and supplements

    Today is Day 23 of 31 for 21.

     
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    A friend recently sent me a link to a blogpost in which someone shared the details of the diet they fed their child with special needs, saying that it reminded her of me.  It was quite similar to our approach to food with Yirmiyahu, so I thought I’d share what we do in the hopes it will be helpful to other parents.  I’ve written about some of these things in the past but others are new so this is the latest.

    As a society we tend to disconnect between what we put in our mouths and how we feel, but not only does what we eat affect the functioning of our physical body, it affects the functioning of our minds as well.

    I’ll start with his current supplements:

    Fermented cod liver oil – this is great for the brain and we give him about a 1/2 teaspoon a day in his bottle, split into two different bottles so the taste won’t be too strong.  This contains vitamin D, vitamin A, DHA and EPA.  I used to give this with butter oil but when he was hospitalized at eight months, he stopped taking his supplements for that period.  When he got home, he was no longer used to the taste of his formula with supplements and rejected them all.  I had to very, very slowly reintroduce them and build up his taste tolerance.  Butter oil just never got added back in.

    Probiotics – these build the digestive system and are very important to gut health, which is at the root of all health.  He started getting these when he was four days old – I added it to the milk I expressed when he was still in the NICU.  He’s been getting 9 billion cfu daily but now his wonderfully high quality probiotics have clumped together into a solid chunk thanks to the moisture in the fridge over time.  I have to find a new probiotic to replace what we’ve been using until now.

    Nutrivene-D- this is a special multi-vitamin for individuals with T21, and Yirmiyahu gets 1/2 teaspoon daily, split between two bottles.  He’s been getting this since he was two months old.

    Folinic acid – this is a more bioavailable form of folic acid and I give therapeutic (ie high) doses of this combined with 5MTHF based on research studies regarding treatment of cerebral folate deficiency, which I believe is the underlying issue responsible for Yirmiyahu’s slow growth rate.  I bought the 5MTHF in capsule form so it’s easy to just open and add to his bottle, but it took me a couple weeks after starting with the 5MTHF to give the folinic acid since they’re tablets and it took me that long to experiment with crushing them.  It turned out it was pretty easy to do and there’s not much of a taste to it.

    Colostrum – I give this daily to build his immune system.  In the bottle.  Naturally.  🙂  The best thing about his formula, other than being dairy-free, is it’s a great conduit for supplements!

    Digestive enzymes – I’m currently adding in some digestive enzymes that we got in a free sample pack once a day to his bottle and hope to add this to my next vitamin order so I can make it something he gets daily.  I think his body would benefit from more help in utilizing the nutrients in his food.

    Zinc – I give this daily via a spray that also has elderberry and echinacea.  He willingly opens his mouth and lets me spray it in – one squirt a day.

    Siverbiotics – a teaspoon daily as a natural antibiotic.  This is unfortunately almost finished and since I’m not yet able to make another order, I’m planning to give him olive leaf tincture once this is gone.

    Evening primrose oil – when I remember I rub some of this on his skin.  I started this just last week and haven’t yet gotten into a groove with giving it so it’s still irregular.

    Homeopathics – I have a really hard time with homeopathics since they aren’t supposed to be given with food nor right after or right before food.  Without being able to tie this to something regular in my schedule, it’s hard for me to remember to give remedies that are supposed to be given several times a day.  So it’s kind of hit or miss.  I most often remember to give Bioplasma cell salts.  I have a couple of homeopathic remedies that are good for when he’s under the weather; R49 Junior is the one I used most last winter and it’s going to be pulled out again this winter as needed.  I have two others in this series but like I said, I’m homeopathically challenged.

    Food – this has been challenging for me, since for so many months Yirmiyahu showed minimal interest in food despite my efforts.  Then he got interested but wasn’t eating what I gave him.  I worried a lot about this and it’s been a huge relief to me as he finally is eating solids consistently a few times a day, and all I have to do is prepare the food and spoon it in!

    Early on I made the decision to avoid were gluten and casein, because both are difficult to digest and have other issues involved with them.  I did give Yirmiyahu dairy formula when I began supplementing and continued until he was eight months – it took me four months to convince the doctors that he was reacting to the dairy and get a prescription for the specialty non-dairy formula that we currently use.  I’m really glad we did this, especially after I did the reading on cerebral folate deficiency – a milk-free diet combined with supplementation is the treatment.  Even though I wasn’t able to actively treat it until now, at least he didn’t have dairy formula for these last seven months to make things worse.

    I’m not yet giving any grains, since they’re so difficult to digest.  When we do, I’ll start with kasha (buckwheat – we eat a lot of this) and quinoa, which aren’t technically grains but they look like they are so I think of them in the same category.

    Fruits and vegetables – I recently saw the suggestion to give six vegetables daily and started making his vegetable mixes with more veggies (used to use three or less).  My first mixture was onions, carrots, kohlrabi, apples and zucchini can’t remember the sixth thing but there was something else) – he loved it!  The blends aren’t based on any recipes, just whatever six things I have in the house that seem to go together.  I don’t consider potatoes a vegetable when making this.   I make a potful, then freeze what Yimiyahu won’t eat within a couple of days in containers and defrost them as needed.  Sometimes I add extra virgin olive oil to this mix after it’s cooked.

    I also give him small bits of raw fruits like apple, guava, banana,  mango and avocado.

    Coconut oil – I try to give him some coconut oil every day.  Since until recently he wasn’t eating solids, I couldn’t mix it into his food.  I added it to his bottles (when they didn’t have cod liver oil added) but recently tried giving it to him on a spoon when it was slightly solidified and he liked this.  Nice to have one less thing to add to the bottle!

    Proteins – he eats chicken, turkey, eggs and lentils (I made him some salmon a couple of days ago but his older siblings found it and ate it first:)).  I usually don’t have to make something special for him; he has some of what we’re having.

    I feel like I’m forgetting something but I can’t think what it could be, so I guess that’s it!

    Avivah

  • How long does it really take to learn something?

    Today is Day 20 of 31 for 21.


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    A few days ago I was at the park and I met a teacher of one of my daughters last year.  She told me she had seen dd13 at a community event a day or two before and she looked wonderful, and then asked how homeschooling was going.

    I told her it was great, life feels much more enjoyable and it’s very gratifying to see how much she’s learning in such a short time.  In the six weeks since school officially started, three of those weeks were vacation days because of the holidays.  So in school they’re still reviewing skills based concepts from last year.  Meanwhile, in that same period of time when we also had lots of breaks for the holidays, dd has completed 3/4 of a year of math and is set to finish the next 1/4 in another week.

    I said something about how efficient personalized learning can be, and her teacher agreed with me.  Then she told me something that I found stunning.  She teaches English in the upper elementary grades and said that what she teaches the girls could be taught one on one in two weeks.  I asked her to be sure I was understanding correctly: “That’s hard for me to believe.  You’re saying in two weeks you can teach what it would take you a year to teach in school?”  And she corrected me: “No, in two weeks of personal tutoring I can teach what it takes me three years to teach in school!”

    I’m telling you, the conversations I have with teachers are the most affirming of homeschooling!

    Today a blog reader sent me a TED talk that reminded me of this conversation.

    The talk is called The First 20 Hours – How to Learn Anything, and the premise discussed was that learning a skill and being able to be functional takes about 20 hours.  This reminds me of an assertion by John Holt, that he could teach all of elementary math to a motivated middle schooler in a small number of hours.  (It’s been years since I read this book and think it was close to twenty hours but don’t remember specifically – if you know what I’m referring to, please share the specifics in the comments section and I’ll edit the post.)

    The speaker outlines four steps for acquiring knowledge, which I thought was valuable :

    1. . Break down the skill to its main components.
    2. Learn enough to self-correct – learn enough that you can practice and correct yourself as you go along.
    3. Remove barriers to practice – eg distractions.
    4. Practice for at least twenty hours – stick with it long enough to see results and don’t allow yourself to get frustrated by feeling stupid.

    To me this reinforces my belief that learning doesn’t need to be made intimidatingly difficult or complicated.  Thinking about learning something new in 20 hours takes a lot of fear out of the process and makes learning even more exciting.  My dd13 and ds11 watched this with me, and as soon as it was over, one looked at the other and said, “So what new thing are you going to learn?”  Dd told me she’d like to learn to draw more – my husband sporadically gives her lessons but she’d like something more regular – I did some quick online research and found some great resources for her that I’ll show her in the morning!

    Avivah

  • Choosing to dramatically cut down on therapy

    Today is Day 17 of 31 for 21.

     
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    Last week I did something really courageous, something I’m so proud of myself for.

    I told Yirmiyahu’s new physical therapist that i won’t be coming more often than every six weeks.

    Courage comes in all kinds of ways and while this might not seem like a very big deal, it wasn’t easy for me.  I’ve been questioning the value of traditional early intervention therapies for about a year now.  This has been a hard thing to do, since everyone ‘knows’ how good therapies are.  I’ve had to let go of wanting validation from outside sources for my choices and look to myself to act in integrity with what I really believe to be in Yirmiyahu’s best interest, despite the criticisms and hurtful assumptions that may be made about my commitment to him.   You have to pat your own back and sometimes that’s hard when you’re doing something different from everyone else and are worried you’re making a mistake that your child will pay for.

    When I began feeling unsure about traditional therapies, it was just my feeling and I didn’t give much credence to that since I thought I must be wrong since therapy is good and therapists are all going to know more and do better than I could.  Then I read an incredibly powerful paradigm shifting book that deserves its own post, Disability is Natural that more than validated my feeling; it got me thinking deeply about disability and how our culture views it, and how do I want to participate in that culture.  This wasn’t something theoretical or exclusive to the philosophical realm.  I found that after therapy I always had an inadequate and negative feeling about myself as a mother and looked at Yirmiyahu’s development with anxiety,  They seemed to be looking for delays and if he wasn’t delayed, rather than say something positive about how well he was doing, the message was instead about how hard we should work so he wouldn’t become delayed.

    As I read about the experience of adults with disabilities who spent years in therapy and the negative self-image that developed as a result of absorbing the unspoken message that there was something inherently wrong with them, I thought how difficult these messages are to combat.  The negative self-image it leaves a person with may be more disabling than the disability itself.  A person with a disability is living in a world where he’s surrounded by the meta message that he’s not enough as he is.  You’re only okay if you’re ‘normal’ (whatever normal means).  We read about how important it is to convey to our kids that we love them unconditionally, but when it comes to kids with disabilities all of a sudden acceptance goes out the window and fixing them takes priority.  The fine line between encouraging Yirmiyahu and accepting him as he is now can be a challenge to balance but I hope I’m getting the hang of it.

     I decided that I wanted to quit therapy but I had some fear around that.  Fear of being seen as a neglectful mother (I had way more than my share of that when Yirmiyahu was in the pediatric intensive care unit), fear of doing something different than everyone else, fear of burning my bridges.

    I tried to quit but – surprise, surprise! – my ambivalence came through and I ended up making another appointment instead, after being told how important therapy is for him, with the implication that what kind of mother can’t find time in her schedule for something as critical to her child as this.

    Last week I finally summoned my inner clarity and firmly told the therapist that if we couldn’t come every six weeks for a check-in visit, then we wouldn’t be coming at all.  I had asked about this option before and been told it was impossible.  But this time when she saw that I really wasn’t going to come again, she made an appointment for six more weeks.  She said she’ll see about when to schedule the next appointment after that.  I told her I’m not interested in discussing it at every visit; six weeks is what we want right now.  In the past I’ve allowed myself to get sucked into discussions that have no productive purpose since their goal isn’t to listen to me and understand my concerns but to get me to buy into their way of doing things without questioning them.  Yirmiyahu has an inner schedule like every child and with support he’s going to learn to do what is important for him to learn when he’s ready.  We can support him but we can’t make things happen.  He’s the one who will make it happen, not the professionals.  That trust in your child is where I see things very differently from the therapists and while it sounds like a small difference, it affects every aspect of how we see him and how we approach interventions.

    When Yirmiyahu was younger, I advocated very hard for more services, which were then allotted to him.  At least verbally.  In reality that never happened.  I didn’t push it because by then I wasn’t sure that’s really what I wanted any more.  The reason I chose to continue with periodic therapy rather than quit altogether is that I’m not trying to do everything on my own; I value the experience of therapists and know that there are things I can learn from them.   I also wanted to leave the channels open in case we want services in the future.

    Switching to a six week schedule gives me such a sense of freedom.  The summer break from therapy was wonderful – I was able to enjoy Yirmiyahu without constantly pulled back to an unproductive way of thinking about him and about myself.  It was also when he learned to crawl and to stand, all without official therapeutic interventions but with lots of support from us.  (The therapist was very surprised and impressed with how good his form was.)  During the first year, my feeling was, I’ll do whatever Yirmiyahu needs.  Imbalance is normal for many of us in the first year after the diagnosis.  But imbalance isn’t an ideal and you can’t live in that state forever. You have to find balance for the sake of every member of your family, and that means finding ways to live a normal life.  Weekly therapy stopped feeling like part of the solution and started feeling like part of our imbalance.

    Not going to official therapy doesn’t mean that we won’t be doing anything to encourage Yirmiyahu’s development.  Of course we will.  It’s more an issue of looking for ways to provide him with a normal life while finding ways to integrate support naturally.  I have the books Gross Motor Skills for Children with Down Syndrome, Fine Motor Skills for Children with Down Syndrome (each of these books was written by therapists with extensive experience working with kids with T21 and are professional and detailed guides), Yoga for the Special Needs Child and a couple of books by Glenn Doman espousing a neurodevelopmental position- in addition to online reading these provide a pretty solid foundation of technical guidelines and alternative ideas to support him.

    He’s a lucky baby to have siblings who play with him all the time – I think our kids really are the best therapists!  They involve him in their games, do fingerplays and sing songs with him, swing him on swings, play in the sand and go down slides at the park, and give him rides on his push car.  Today ds7 ran to get him from me so he could play with him in the ball pit at the park.  They put mattresses on the floor and put toys just out of his reach to encourage him to crawl.  They show him how to play with toys and give him lots of positive feedback.  Love is a positive motivator, and there’s no doubt that Yirmiyahu extends himself in order to interact with them more than he would for a therapist that he doesn’t have much of a relationship with.

    And to be clear – I’m not against therapy; I’m open to increasing therapy visits in the future if I see that’s what will be most supportive of Yirmiyahu’s needs at that time.  But now it’s not and sometimes having the courage to support your child looks like this.

    Avivah

  • Happy always? – questioning stereotypes

    Today is Day 16 of 31 for 21, a blogging effort to promote awareness of Trisomy 21.

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    Tonight I was speaking to dd17 on the phone and she mentioned that a classmate of hers mentioned having a niece with Down syndrome.  Dd responded that her brother also has T21.

    The classmate asked to see a picture, so dd pulled out her phone to show her.  A bunch of girls overheard that her brother has Down syndrome and also wanted to see the picture, afterward all clamoring about how cute Yirmiyahu is.  Dd said she realized that she views a person with T21 much differently than her peers, even her classmate who is studying special ed.

    The general feedback was, “Oh, kids with Downs are so cute!  They’re always happy and smiling!”  And there was something about this that bothered her.  I know this is a much better response than what people with T21 have faced for many years, but we’re still so far from having acceptance and appreciation of people with special needs as individuals.

    Yirmiyahu is a very engaging baby.  I’ve never seen any of my other kids emotionally pull people into their sphere like he does.  I don’t think that people are telling me he’s cute just because he has T21, since most people who casually meet us have no idea.  But when people who know his diagnosis tell me how cute and happy he is, I’m a little uncomfortable.  Because it’s just too stereotypical.

    Stereotypes hurt people, whether they are idealized positive versions or negative and judgmental stereotypes.  Stereotyping is convenient because it gives a way to mentally ‘file’ a person, but it also keeps the person being  from being able to be seen as the individual he is.

    Yirmiyahu is very good natured and enjoys interacting with people tremendously.   He has an inner light and a way of spreading joy to others that is a special gift.  He also has times he’s overtired and grumpy or hurt and he’s not feeling cheerful.  To stereotype someone with T21 as ‘always happy’ is not only false but hurtful because it minimizes him as a person.  It devalues him as a unique and special person (and every person is unique and special) and puts him into a predefined box that says ‘different’ and ‘other’ on it.

    A person with T21 who has the ability to look at the positive in the world should be valued for that – not treated like a mascot or a pet dog who slobbers all over you with excitement when you walk in the house.  He’s a person.  A person with strengths and weaknesses.  A person who wants to be liked and appreciated and seen for who he is.  Just like all of us.

    Avivah