Monthly Archives: October 2013

‘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

List of free Kindle classic books

Today is Day 29 of 31 for 21.

Years ago, after hearing about a curriculum mentioned here and there, I finally checked out the Robinson curriculum myself.  I was expecting to find a computerized curriculum that the kids could do independently of adults, the kind of thing that I’m not a proponent of.  Imagine my surprise when I found guidelines to homeschooling that matched many of my own beliefs and an approach that appealed to me!  I’m too eclectic to take on all of anyone else’s program but I integrated some aspects of their approach and have maintained it until this day.

One aspect of the approach was to do the basics very well and not get distracted by lots of side subjects.  All kids have a mandatory daily reading time, and there is a list of recommended classic books that are suggested.   My kids use books of my choice for their mandatory reading; they choose their own reading material for their free reading.  I’ve used this list as a guideline for our kids, though I’ve also added in my own choices that are more contemporary but still good reading.

Today I found this online list of books suitable to the Robinson curriculum; I’ve loaded a number of the books in the past onto our Kindles via Project Gutenberg, which has a huge selection of free classic books available.  However, this list of links is for Amazon books and so it’s much faster to load the books.  Here’s the link – free classic Kindle books.

Some of these are loaded onto my Kindle to read with the younger kids or as read alouds; some are loaded for ds11 or dd13 onto their Kindles based on their individual levels.  I’ve loaded a couple for myself as well!

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.

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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

Making math fun

Last year a friend who is amazing with doing art projects with her kids suggested we team up this year: she’d do art with our kids, I’d do math.  I loved the idea but told her it wouldn’t work since I don’t ‘do math’ with young kids, I just provide them with games to play together or play with them.

When it comes to making math fun while building familiarity with mathematical concepts, games rate at the top of my list for how to accomplish this goal.  I’ve written about my proclivity for games a number of times but it bears repeating because it’s so easy and valuable to integrate into your day.  Games are so helpful in developing the mind; don’t underestimate them because the child is having fun!

There are loads of games out there and I’ll share some that we have that we like:

  • Monopoly (regular and Jr. edition)
  • Rummikub (taught this to ds6 right after he turned five and it quickly became one of our favorites to play together)
  • Life
  • Sudoku (for the older kids),
  • Battleship
  • Sequence (this has a Jr. version that I no longer own)
  • Stratego
  • Rush Hour
  • chess
  • Amazing Labyrinth
  • Quarto
  • Quirkle
  • checkers
  • backgammon
  • assortment of card games (eg War can become multiplication, addition or subtraction)
  • games that build visual perceptions skills – eg Make ‘n Break

The list could go on and on this short list is of games that we have and use.  Mostly the kids play with each other though there’s usually an introductory period with a game in which I (or an older sibling) spend time teaching them how to play.  I tend to play with them more when the game is short and doesn’t require too much focus, since I usually have enough things going on that need my supervision that I can’t give a game my undivided attention.

I also have materials that I categorize as manipulatives:

  • pattern blocks
  • tangrams
  • geoboards
  • base ten blocks
  • cuisenaire rods
  • wrap ups
  • hundred number chart and tiles
  • teddy bear counters (three different sizes and six colors)
  • puzzles

I let the kids play with the manipulatives pretty freely and even without  instruction I’ve found they absorb concepts regarding numbers, order, size, matching.  For my kids, all the things on this list would be considered games since they voluntarily choose to play with these.  I was smiling to myself recently as I watched ds6 take out the hundred number chart and match the number tile to each square for fun, knowing how many people wouldn’t expect a child to choose something so seemingly academic on his own, but kids really don’t make distinctions between fun and learning at this age unless you teach them otherwise.

I also use them to demonstrate mathematical concepts in a hands-on way.  Sometimes I favor one manipulative over another; this year I’ve used the hundred number chart a lot and in past years hardly used it at all.  Recently I’ve hardly touched the cuisenaire rods but found the base ten blocks super helpful; in the past it was reversed.

Having these activities around and using them on a regular basis have helped out kids develop a sense of math being fun and relevant.  Making games and learning activities the focus in the early years rather than workbooks is also a good reminder for us as parents that learning should be enjoyable and make sense.  Math is logical and interesting; giving our kids a chance to experience that from the early years takes away a lot of the fear and intimidation that have unfortunately become the experience of so many kids regarding math.

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

Municipal elections tomorrow

Today is Day 21 of 31 for 21.  This month is going so fast and I’m not managing to find the time to post about a number of things I thought I’d post on.  Well.  I get to let go of that perfection thing, once again.

Tomorrow are local elections, and since I live so close to a central shopping area where there’s been a huge focus on electioneering, I can practically sing the campaign songs by heart since I hear them playing over and over again for hours every Friday.

There are five of us in the family who are able to vote: me, dh, ds20, dd18 and dd17.  (You can start voting in municipal elections when you’re 17.)  A bus was arranged by the religious party to bring home kids of voting age who are studying in Jerusalem and they called us to ask about dd17 and ds20.  Dd18 is in the US so obviously no one is going to fly her in for her vote :) and dd17 has to be there in the evenings for the elderly lady she works for so she can’t come.

I didn’t think ds could come home for this because it’s a three hour trip in each direction, so you can get here at 11 pm and hardly be home and vote and then head back – he doesn’t like to take time away from his learning so I was pretty sure this wouldn’t be compelling.  But the person arranging this asked for the number of his rosh yeshiva and then ds was told it was important he vote – I didn’t know he was coming until he was on the way home so it was a really nice surprise for me!

I don’t see enough of this marvelous young man (I could say this about all of my kids who aren’t living at home full time – I just can’t get enough of them!) and so it’s a treat for me to have him home even if it’s only for twelve hours.  The younger boys didn’t know about this before they went to sleep so they’re going to be very excited when they wake up and see who’s here!

Something nice about these elections, and I believe is unique to Karmiel, is that this year there is just one religious party.  Candidates from what were previously three parties have joined together on one ticket, and the name of the party is Yachad – Together.  Togetherness and unity is something this very polarized society could use a lot more of and I feel fortunate to live in a city where the leadership works toward this as a goal – not only during elections but in general.  If it weren’t something that was already an effort, it’s unlikely they could have pulled together the different factions just for political purposes.  As the chief rabbi of the city said, he doesn’t know how much they’ll gain during the elections, but in putting this party together they already gained something and it was worth it for the unity it engendered.

For me, I’m happy that the elections are bringing my little family a little more ‘together’, too.  :)

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

Finding peace about accident

Thank you to all who expressed empathy and concern about how I’m doing after the accident.  It’s taken a bit of time but I’m feeling much better.  I took my time to feel upset and betrayed and angry and now I’ve moved into a better space.  I don’t feel like a victim anymore – I made a decision to pursue compensation to a certain point.  If that works, great.  If things get held up and it doesn’t go, I’ve drawn a line in my mind beyond which I’m not going to give this situation any more of my time and energy.

My husband approached the head of Hatzalah (a private emergency service), who was called to the scene after the accident, and explained the unwillingness of the driver to provide her insurance/car/license info.  This man immediately said he’ll get the information from the driver and not to worry about it.  He said the other party probably heard an American accent and thought “Friarim” (suckers), assuming they could take advantage of the situation because we’re not native Israelis.  He wasn’t intimidated at all by the fact that the driver was a lawyer.  He was mildly interested/amused and said there’s nowhere for her to hide.  He’ll tell her she can choose to work with us or not work with us but either way this is going to the police and it will be worse for her if she doesn’t cooperate.

This is a person who knows how to get things done and getting him involved is my effort to see justice served.  This is where I’ve drawn the line: I’m not going to find witnesses to the accident and pursue this further in court if for whatever reason she doesn’t cooperate.  I’ve lost all I’m going to lose in this situation (except for a few hundred shekels when I have my osteopathic appointment) and I’m not going to lose anything else.  Not peace of  mind, not time, not energy.  Nothing.  I’ve decided on what my stop loss order is going to be (to use a Dale Carnegie term) and this is it.

Ds4 is doing great.  I’ve been giving him opportunities to talk about the accident and he brings it up from time to time and talks about different things.  It’s good not to shrink from discussing it.  He seems to be dealing with it well.  I’m a little (maybe a lot :)) edgy when I cross the street at crosswalks now but I think that’s pretty normal and it will get better with time.  I have some residual soreness in my lower back but I’m basically back to myself.  I’m sleeping a lot better now and have been able to release a lot of my antipathy towards the other driver although I’m not yet at the full forgiveness stage.

I think a big part of moving from victim to empowerment mentality is feeling like I have a say in what happens, that life isn’t just happening to me.  Realizing that it’s the driver who has a problem, not me, was extremely helpful in reframing everything that was going on.  I was mentally giving her the power in this situation and now I’m not doing that.  I feel like a powerful person who is making a conscious decision about how to handle this, and it’s not a decision being based on fear or exhaustion.  I’m actively deciding how much this is or isn’t worth to me and that feels very healthy.

Even if we get the insurance information tomorrow, it will take a few weeks to get through the process and so I’ll let you know what does or doesn’t happen when we’re further down the road and have some closure.  Thank you all again for caring about us!

Avivah