Monthly Archives: October 2012

31 for 21 – A father’s journey – Perfect

Today is Day 30 of 31 for 21, a blogging effort to promote awareness of Trisomy 21.
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Several weeks ago, a family on one of the T21 lists that I’m on shared with us that they had been featured on ESPN.  In this fifteen minute video, the father shares with tremendous honesty about wanting to abort his daughter when they learned she would be born with Down syndrome, and his journey towards embracing her as perfect as she is.

Avivah

31 for 21 – Pregnancy terminations of unborn babies with Down syndrome

Sorry for the long delay in posting – my ds13 returned over a week ago from a month long visit in the US, and brought me a new (used) laptop with him.  This was something I had been anticipating with great eagerness since my computer has been out of commission for two months.  Ironically, the day he brought it home and I turned it on to use it for the first time, our internet service was cut off – when we registered for our phone and internet service, we authorized automatic deductions from our bank account.  The internet service provider broke off from the phone company and now needs a separate authorization, but didn’t tell us – they just cut off our service!  We figured out what happened when we tried to log on and got a message from the internet service provider informing us that we needed to take care of payments to have service.  That took a week.  It is so nice to finally be online and to have a computer again!!

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Today is the Day 29 of the 31 for 21 blogging effort to raise awareness for Trisomy 21, also known as Down syndrome.

When I was in the NICU with Yirmiyahu, after the baby in the isolette next to him died, the next baby placed there was a very tiny preemie.  He was born at 23 weeks, and being able to see what a baby that young looks like was amazing.  He was so, so tiny but fully formed – he looked like a miniature baby.  The length of his entire foot was probably about equal to the tip of my pinky finger.  Looking at him and then at my baby, I thought about how babies at 23 weeks of pregnancy can still be legally aborted, and that most babies with T21 are aborted.  Yirmiyahu is lucky to be one of just ten percent of babies with T21 who make it to this world.

When my computer went down a couple of months ago, I lost the sites I had  bookmarked so I did a search to try to find a particular T21 site again.  In the process, I came across a board for mothers who had terminated or were planning to terminate their babies with Down syndrome.  It was difficult to read about so many women making this decision, and it was clear that this was a painful decision for many of them.

Something that many women wrote is that they felt it would be selfish of them to let their child live, to suffer from whatever challenges he would be born with.  One woman who aborted her baby made a statement that I found very insightful.  She had chosen to abort her baby even though there were no obvious health challenges in the prenatal screening other than T21, and wrote that she believes Trisomy 21 isn’t incompatible with life as much as it’s incompatible with society.

Isn’t that profound?   And isn’t it true?  The difficulties for our children with T21 don’t come primarily from the state of being born as they are – yes, there are physical and cognitive challenges that they will face.  But being faced with challenges is something we all can look forward to – not one of us will go through our lives without significant tests in some areas.  The real difficulty for a person with a disability comes from having to live in a world in which they are seen as inferior and incompatible.  As a society we are so uncomfortable with differences, that many people see it as laudable to prevent a child who will be too different from being born.

I believe that something that helped me to easily accept the news that our baby had T21 was being the mother of nine other children of a range of ages.  During the last nineteen years, I’ve learned that just every child is going to have his challenges, no matter how high his IQ or how robust his health.  A typical child may be made fun of, struggle with self-esteem, have learning difficulties – just because they’re born typical is no guarantee of their performance at any point in life.  However, when you have a typical baby, you’re congratulated – no one feels the need to tell you right after you’ve given birth that your child will one day face some kind of difficulties, though this is absolutely a fact.  But when you have a baby with T21, instead of congratulations you get warned about all of the probable issues upfront by doctors with sad faces.   This can be very depressing if you believe that doctors have all the information and all the answers.  I don’t believe that doctors can know the potential of any child, and since I know every child will have challenges, hearing about our baby having some more easily predicted concerns didn’t frighten me.

The clear message that doctors project, whether spoken or not, is that your child is a problem.  I’m not surprised that so many people choose abortion when faced with this attitude.  But maybe our children being born a little different isn’t really the problem?  Maybe the problem is a world in which it’s normal to believe that that people who are different don’t deserve to exist?  Maybe children – and adults – with differences are sent to this world in order to make the world a more loving and accepting place, to remind us that we’re all inherently the same even when we look different?

When I was pregnant, I read a blog in which someone shared about someone who had been told that their baby had markers for T21 and aborted her.  When the procedure was complete, they learned that their baby didn’t have Down syndrome, and the grief that they had aborted their healthy child was indescribable. This blogger wrote, but what about if their baby had T21?  Would it then have made it more okay to have killed her?  Does a child with Down syndrome deserve to live less because he may have health issues or cognitive delays at some point in his life?

Here’s a short and sweet video that I enjoyed – The Beautiful Faces of Children with Down Syndrome.

These children are our reminder that every single person has value and a purpose in being here, though their beauty and gifts are not often enough recognized in a world in which differences aren’t welcomed.

Avivah

31 for 21 – Why is it so difficult to access services for my baby???

Today is Day 22 of 31 for 21, a blogging effort to promote awareness about Trisomy 21, also known as Down syndrome.

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After Yirmiyahu was born and I shared the news with people that he has Trisomy 21, I felt so encouraged to hear that there were significant resources in Israel to support his development.  Now that he’s three and a half months old, I’m feeling much less supported and encouraged.

I’ve been to plenty of doctors for Yirmiyahu – I’m not going to enumerate them because I think I have in the past!  I’ve also taken him to the Child Development Center, where he’s supposed to get supplemental therapies.  Before the holidays he had one physical therapy appointment, and I have another scheduled for next week.   While I appreciate that, I kept feeling that there should be a lot more early intervention happening.

I haven’t been passively waiting for outside help – I’ve been trying to put together a neurodevelopmental program for Yirmiyahu on my own.  I don’t mean to sound whiny, but I really don’t think I should be needing to reinvent the wheel and figure out everything myself- I’m not living in a third world country and Down sydrome is something there’s a lot of experience with.

I spent weeks trying to reach the national support organization for parents of children with T21 – no luck.  They never answered or called back in response to my repeated messages.  I tried to reach the clinic in Jerusalem that specializes in Down syndrome – no luck.  Again, no one answered or returned my calls.  Finally last week I went into the local health clinic to find out about getting services for Yirmiyahu, and was told I need to speak to his pediatrician (who I’ve seen a number of times already and never suggested anything).  I made an appointment for the next morning.

That night, I called someone in Jerusalem with an eleven year old son with T21 to find out what is normal – maybe my expectations were totally off?  She told me the norm is that from the time the baby is very little, he gets therapy at least three times a week – once speech therapy, once occupational therapy, once physical therapy.  I also learned that she was able to successfully breastfeed her baby exclusively thanks to the exercises the speech therapist gave her.  Nice.

Now armed with the knowledge that others in different parts of the country in the same situation as me are getting significantly more services, I went to see the pediatrician.  She told me that the Child Development Center here is perfectly fine and if they don’t offer more services, it’s because it’s not necessary.  Then she demanded, “What kind of occupational therapy are they going to do on a baby so young?” and without giving me a chance to answer, told me that there’s no such thing as occupational therapy for a three month old.

So I went to go see the doctor who is in charge of the Child Development Center.  She reminded me that I had already had an appointment in the beginning of September for physical therapy and that I had another one scheduled for the end of October.  Yes, but doesn’t once in seven weeks seem….well, pathetic?  Apparently not.

She told me that she will meet with me in a month to discuss this because she doesn’t want me to feel deprived or to think that I’m not getting services I should be getting.  Personally, I think she should worry less about my feelings and more about making sure my baby gets the support he needs.  When I told her that in other parts of Israel parents of babies with T21 are getting multiple therapies a week, she told me that a baby should only have one person working with him and that’s the physical therapist.

This was so frustrating.  Despite it being well-known how important it is to help babies with T21 very early on in their lives, somehow this isn’t happening here.  I felt like I was in the Twilight Zone when I was talking to both of these doctors.  My partial comfort is that I’m working with Yirmiyahu on a few developmental areas and I hope he’s not suffering for lack of support, but it would be nice to get some support from trained professionals.

Later that day I was happy to get a call from the Feuerstein Institute in Jerusalem, which specializes in brain development and rehabilitation, and they’ve had a lot of success working with children with Down syndrome.  I had been trying to reach them for several days and left a couple of messages, but due to my experience with not having my calls returned, I wasn’t expecting to hear from them.  It was so validating to speak to someone there who told me this is absolutely a critical time to start working with him.  She told me the person who works with babies will call me and we can schedule an evaluation – this is private, however, and I don’t know how long their waiting list is for infants.  (I’ve heard that it can be months for adults.)  Hopefully we can get him seen soon.

You know what the doctors seem to be most worried about?  His weight.  Although he’s gaining weight nicely now that he’s started supplemental bottles, he still remains under the average growth curve.  (I pointed out that on the T21 growth chart he’s in the fiftieth percentile but was told that’s not relevant.  Why is there a different growth chart for babies with Down syndrome if it’s not relevant??)  My Israeli friend laughed when I told her about this and told me this is what they tell most mothers in the country, that their babies need to gain weight.  I suppose that’s reassuring but what would be more reassuring is if I could actually get some meaningful assistance for my baby!

Avivah

31 for 21 – Benefits of using Haberman bottle

Today is Day 21 of the 31 for 21 blogging effort to increase awareness about Trisomy 21.

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(Edited to add: While the concept is great and it worked well, I can’t recommend it.  The silicon nipple lasts for just a month before cracking; I bought several bottles and used a number of the nipples included and this was my experience with every single one of them.  This is something that shouldn’t happen so fast and makes this bottle a frustrating and expensive option.  With our second baby with T21, I used the MAM bottle, which also encouraged a strong suck, helped the baby keep his tongue in his mouth,  just 40 shekels for the bottle (versus 160 shekels) and the nipple never cracked.) 

Every time I go out with Yirmiyahu and pull out his bottle, I get curious looks and if the person is close enough to me, they ask me about it.  Here’s why:


It looks a little bit different, doesn’t it?

After spending weeks working to get Yirmiyahu to be able to exclusively nurse, after a couple of weeks I saw that he didn’t seem to be getting enough.  I still don’t know why this is – maybe I didn’t have enough milk, but I think it’s something else.  Unfortunately I don’t have any professional feedback on this so I’m just guessing.  Anyway, since my efforts to remedy this on my own weren’t working, I agreed to the suggestion that we give supplemental bottles.

The bottles were great – I was able to see how much he was getting and that was reassuring, as was seeing the return of wet and dirty diapers.  But something more troubling also presented itself.  When I had taken him to the doctor as well as the physical therapist just three weeks before, they had both commented on how good his mouth closure was.  Since infants with Trisomy 21 have hypotonia, the lack of muscle tone can make it harder for them to keep their tongue in their mouth.  I credited Yirmiyahu’s good mouth closure to nursing.

However, within two weeks of a regular bottle, his tongue began sticking out a lot more frequently.  This isn’t a surprise, since sucking on a bottle requires a baby to thrust his tongue forward, and nursing requires him to pull his tongue inward.  But surprise or not, it was disturbing to me – was this the price I had to pay to help him gain weight?  I was feeling stuck between a rock and a hard place, when a friend suggested the Haberman feeder.

The Haberman feeder was created for babies with feeding difficulties, but I think it’s a good choice for all babies.  It’s the only bottle that a baby has to use his mouth in a similar way to breastfeeding.  There are a number of benefits to this, but the one that most interested me was that it would help Yirmiyahu build his oral motor strength, just like nursing.

Now, getting him to drink from this wasn’t so easy.  While he could finish a five ounce bottle in twenty minutes or so, it took him four hours to drink the same amount the first time we tried this bottle.   This was problematic because we needed to get his weight up, and for a few transitional days I gave him feedings from regular bottles as well as from the Haberman to be sure he was getting an adequate amount to eat, while giving him a chance to learn how to eat from this.

However, we got through that period and have been using just this bottle since then.  Just as quickly as we saw his tongue begin to stick out more, we’ve seen it go back to how it was before.  This would take a lot of speech therapy to overcome if we stuck to the regular bottle, so it’s a big savings in time and energy!

Another benefit is that excess air being gulped in along with the milk is eliminated due to the bottle design.  Yesterday I happened to sit down at the park bench next to the school nurse and she asked me why we didn’t burp Yirmiyahu a few minutes after he started drinking his bottle.  I hadn’t consciously thought not to burp him, it’s just that he didn’t need it.

Here’s a short clip of Mandy Haberman, the designer of this bottle, showing how it works:

The disadvantages to this bottle that I’ve experienced are:

– Cost – it’s not cheap!  We spent 160 shekels on this, which at the current exchange rate is over $40. Contrast that with bottles that are considered upgrades/higher quality and priced at 40 – 60 shekels.   (Updated to add: two nipples are included with the bottle.  Since the nipple lasts only for a month before cracking and becoming unusable, this dramatically adds to the cost of using this bottle.)

– No lid – when you travel with this bottle, there’s no lid to prevent spilling.  I haven’t found much leakage to be a problem as long as there’s no milk in the top part of the bottle, since it required suction to get it out.  But when there is milk in the top reservoir, I just wrap a cloth around it in the diaper bag to prevent any leaking and that seems to work fine.

Avivah

31 for 21 – Finding our place in the charedi community

Today is Day 20 of 31 for 21, a blogging effort to promote awareness of Down syndrome, also known as Trisomy 21.

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>>How does it play out practically to have different kids in hashkafically (philosophically) different school systems? What I’m really saying is- do you have a community to fit into now??<<

When my husband and I were discussing what school system to put our boys in, the issue of where we – and they – would fit into the community was a major concern.  The charedi community is tightly defined and little things that you do can easily put you outside of the community.

We talked a lot about if the charedi community was the right place for us or not and have agreed that it is.  Though I said the charedi community is tightly defined, it’s not as narrow as it may seem- a major Israeli paper a while back coined the term ‘modern charedi’, and others have used the terms ‘post charedi’ and ‘neo charedim’.  All of these are referring to charedim who don’t quite conform to the charedi mold but affiliate as charedi. I don’t care for any of these terms, but then again I’m not a fan of labeling so that’s not so suprising.  My purpose in bringing this up is to say that we think there are a large number of people in the charedi community who think similarly to us, though most of them will look externally like everyone else and make the choices that everyone else is making.

We do feel that as far as an Israeli charedi community goes, Karmiel is on the open and accepting side.  Having said that, it is still an Israeli charedi community with standards and expectations that are charedi.  In this community, sending to any school but the local cheder is a choice that positions you to be seen as outside of the community.  When making the choice to send our boys to Amichai, we looked at it as follows:

1) People tend to be superficial.  If we and our kids look and act ‘normal’ (by the standards of this community), that’s a big factor to being accepted.  This is what the chief rabbi of the city said when we discussed this decision with him.  This was also true of homeschooling and I believe that was one of the biggest factors to my influence regarding homeschooling in the Orthodox world – that our family didn’t broadcast ‘different’.

2) You don’t have to bring up the differences you have philosophically with others.  It’s much better, in my opinion, to talk about what makes you similar than what makes you different, until you have a decent relationship with someone.  Once you have that framework, then you can talk about your differences and the person you’re speaking to hopefully already has some degree of respect for you as a person.  In my case, this means that I don’t talk about my beliefs that are outside of the charedi norm in casual conversation.

3) We already know many people in the charedi community and are considered part of the community.  I don’t think they’re going to be so quick to turn their backs on us just because our kids go to a different school if we adhere to no. 1 and no. 2 above.

4) When we talked about what we were concerned about socially for the boys, there was the short and long term view.  In the short term, we want them to have like-minded friends.  At this early age this is more external which  means they are very compatible with boys from the cheder.  They can continue to have friends from the charedi community even if they aren’t comfortable at social events geared to only those in the school.  They may or may not be seen as part of the larger group of boys their age in the community, but as long as they have individual friends, the group dynamics aren’t that important.  In any case, when kids run in groups it generally isn’t when the best social experiences happen.  Kind of like when dogs run in packs.  :)

In the long term, we also want them to have like-minded friends, and this is where we see running into trouble a bit down the road if we send to the cheder because as they get older, the commonalities need to include common goals, aspirations and an overall worldview, in addition to external similarities.  So we’re thinking about how to position them that they’ll have peers at a later age who will be a match for them.   There are some wonderful things about the charedi boys educational system, and there are some things that aren’t quite a fit for our family.  Our goals for our boys are different than the goals of those who send to the cheder in a few key areas; these areas of dissonance are very common to Americans who move to Israel.

As I’ve mentioned before, we see value in sending them to an elementary school where other boys will later be attending high schools in which they will get diplomas that will enable them to pursue higher education, which in turn means they are on track for some kind of career outside of full-time Torah learning.  This probably doesn’t seem like a big deal to those of you outside of Israel, but is so major that it’s the main reason I spent so many hours soul searching if we could call ourselves charedi.

Since where the boys go to school at the elementary level is tied in with where they’ll go to high school, it’s also tied into army service, higher education, and who they will marry, and this last one was a big concern of mine.  Young men who are already working or engaged in studies other than full-time learning (even if they continue to spend hours daily in Torah study) when they get married are definitely viewed as second rate (sug bet), versus those engaged in full-time Torah learning.  Our boys are bright and can be successful in the Torah only model; we’re not choosing a different path because they can’t handle the intensity or rigor.  To us, a young man who is serious about Torah and able to navigate in the professional world is the Torah ideal, and it disturbs me that those who try to rise to these ideals are looked at as less-than.  It’s a more challenging path than the Torah only path and deserves respect; however, I don’t harbor any false hopes about this.

As I said in my last post, I know we’re walking a fine line.  Fine lines aren’t the easiest things to stay balanced on!  But I’m hopeful that we can successfully navigate this and that our family will feel welcome in our local community.

Avivah

31 for 21 – Values based decision regarding boys’ schooling

Today is Day 17 of 31 for 21, a blogging effort to raise awareness of Trisomy 21/Down syndrome.  Thanks to the recent birth of our baby who has an extra chromosome, this is the first year that I’ve been a participant.

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Yesterday morning I got a call from ds6’s teacher at Amichai.  After she told me how wonderful he is (nice when your child’s teacher appreciates him so much!), she got to the point of the call.  She heard about what was going on with the cheder giving us the runaround about not accepting our kids, and wanted to offer her support in advocating for us if we wanted it.  I thanked her and then spent the next half hour explaining why we’re going to keep the boys at Amichai.  Not just until the end of the year, but with the intent to continue there long term and we plan to enroll ds5 in Amichai’s first grade next year.   She kept asking me if I was really okay with this decision or if I was assuming this position by default because we had no choice.  I explained that we aren’t leaving the boys at Amichai because we  have no choice – the cheder will definitely take ds6 and it’s possible they’ll eventually take ds10 if we continue to pressure them.  But we decided that’s not what we want and to drop our pursuit of this school transfer – and we did it from a position of strength.

My husband and I do a lot of talking about the education of our children and the values we hope they have, but this has been seriously ramped up in the last six weeks, as we’ve been deciding where the best elementary school for our elementary aged boys is.  We had decided to transfer them to the local cheder from the school they are currently in, then ran into trouble when we were told our kids wouldn’t be accepted.  But because it wasn’t a real ‘no’, we were in limbo for a while.  This provided us with more opportunities to think again, and again, and again about if this was really the best decision for our boys.  (I wrote about the differences between the two schools here.)

To recap, we thought that making the transfer would assure their social transition into our community and that being in a different school from everyone else in the charedi community would be a big strike against them.  We also felt that the boys in the school we wanted to transfer to have a more carefully guarded home atmosphere, which is similar to ours in many ways.  And yet the school they were in- Amichai – still had all the positives that we saw when we made the initial decision to send them there.

There were so many  issues involved in this – the macro and micro view both religiously and socially, which are intrinsically intertwined.  Religiously things are much more stratified here than in the US, and the boxes you need to fit into are much narrowly defined.  If you don’t choose your box, others will do it for you, but you can’t stay outside of the box.  A big part of this decision was about choosing our box.

There was a strong emotional pull towards and away from both choices, and the more we talked the less clarity we had.  Finally, we sat down and wrote out a list of what our values are.  Decisions this big aren’t based on little things like how long summer vacations are (actually, that can also be a values decision since a longer vacation can mean more family time), but about how well your values match the institution where you send your child.  And to be fair to our children, the school we send them to and ourselves as parents, I think it’s important that we’re consistent in the spoken and unspoken message we project. I don’t want my children caught between different world views and feeling they don’t fit anywhere.

Writing out our values was important because it took the emotion out of the discussion. We looked at each value, as well as the advantages of each institution.  When we did that, we were able to clearly see that the main value in sending to the cheder was social and that our desire to transfer the boys to the cheder was motivated by fear: basically, fear of doing something different.  I’ve never believed that fear is a good place to make a decision from.  But we are looking at the realities behind those fears in order to address them.

When we looked at the positive values we have, we were able to clearly see (once again) that Amichai came out ahead in almost every single category.  One factor we discussed at length is the long term view: what do we want our children to be like religiously and spiritually (those aren’t the same thing!) when they’re adults?  These decisions are being made when you put your children into elementary school, because the schools are tracked and once you’re in one track, it’s not so simple to transfer your child to a school that is in a different religious track.

One issue in which our thinking differs from the charedi community is that we see a positive value in our children learning secular subjects at the high school level.  However, secular subjects not being taught during the elementary years wasn’t a major concern – this is something we could and would supplement on our own.  I know quite well as a homeschooler how little time it actually takes to teach these subjects once a child is ready for them.  So we would have been fine sending our boys to a school without secular subjects for the elementary years.

What I was more concerned about is how this attitude towards secular subjects as well as towards those outside the charedi community would influence their long term choices and their self-image if they chose to make decisions that were different from their peers. I felt it would be unfair of us to have expectations that our boys would get a certain kind of high school education, but put them in an elementary school that had different definitions for success.

We’ve talked a lot about how to walk this very fine line – how to affiliate with the charedi community while not going along with the party line in some areas.  This was a tough, tough decision that requires a lot of independent thinking and willingness to walk a non-mainstream path.  You can see how hard this was since we were initially so clear about what we wanted but then we still got off track after hearing opinions from others.  This won’t be an easy thing to do (nor would it have been easy to deal with the challenges we would have faced at the cheder), but it resonates with us emotionally and intellectually.

This decision follows over a decade of homeschooling.  For years, we had to walk our own path and believe in what we were doing without any positive feedback from others; certainly in the very beginning we would have been strongly dissuaded if we had asked for advice.  But as the years went by and the kids got older, people started to see how our kids were turning out and they started telling us how lucky we were, that hey wished they had the courage to do what we did, and asking us how we had the strength to swim upstream.

Similarly, this isn’t a decision that we’re going to get much support about and in the short term I think very few people will be able to understand why we’re doing what we’re doing.  It’s just too different a way of thinking about education and the goals of education. This decision was really hard but we’ve learned again and again that you get the best results when you act in line with your deepest values and conscience.

Our family is in a unique position to be a bridge for others who may want a choice within the charedi world that allows for more appreciation of diversity, and I hope that more families moving to Karmiel will seriously consider Amichai.  I’ve said before that I really think it’s a much better fit for American immigrants than the cheder in a number of ways.   However, regardless of what anyone else chooses to do, we’re glad to have gotten clarity and realigned our actions with our beliefs.

Avivah

31 for 21 – What is ‘people first language’?

Today is Day 14 of 31 for 21, a blogging effort to promote awareness of Trisomy 21.

When my husband was telling his parents the news that our new baby had Trisomy 21, he made some kind of comment like ‘he’s a Down syndrome baby’.  I really try not to interrupt his private conversations but this bothered me so much that I had to comment, and I loudly whispered to him, “He’s not a Down syndrome baby, he’s our baby with Down syndrome'”.

Does that sound like I was reacting to silly semantics?  To me it didn’t feel like that.  I felt the terminology was presenting our baby as a problem and was impersonalizing who he was (obviously this wasn’t dh’s intention).  You don’t define a person by what is wrong with them.  You don’t call an infant with strep a ‘strep baby’ – because that’s not accurate.  You don’t call a toddler with leukemia a ‘cancer child’.  You don’t call an adult a ‘heart disease man’.  It’s really obvious when you use those examples how ridiculous it sounds.

And yet when it comes to T21, it’s normal for people to say things like, “he’s a Down syndrome boy” or “she is a Downs”.  No, no, no.  Just tonight I was speaking to someone on the phone who kept telling me about different people she knew with links to Down syndrome and saying things like, “Her daughter was Downs” until I felt like I had to say something.  I know that people don’t mean to be offensive or hurtful, but there’s a much more appropriate and less demeaning way to refer to others.  There’s a huge difference between referring to somone with T21 as someone who has Down syndrome, or someone who IS Down syndrome.   A few days after my whispered comments to dh, I learned that it even has a name: people first language.

People first language means that when you speak about a person, you first speak about them followed by a mention of their disability or ‘issue’ – who they are is their primary defining characteristic, and their disability is just one aspect of who they are.  It’s true that it’s a bit more wordy to say ‘a baby with Down syndrome’ instead of a ‘Downs baby’.  But our words shape perceptions and reflect our understandings.  Isn’t it worth a couple more syllables when we speak to focus on seeing people for who they are rather than what they have?

Avivah

31 for 21 – Why we chose not to homeschool in Israel

Today is Day 13 of 31 for 21, a blogging effort to promote awareness about Trisomy 21.   The potential of children with T21 is amazing and you can click here to find other bloggers sharing their experiences!

>>do you know anyone from the US that successfully homeschooled their children in Israel? I am feeling more and more like homeschooling is right for our family, and now it is one of my greatest fears of living in Israel. I’m nervous my kids will always feel like outsiders and not integrate properly.  Are you kids missing homeschooling?  do you think the transition would have been harder for them had they homeschooled?<<

This has been a long overdue post since I told the person who asked this back in January that I would answer it a week later.  Yes, that’s embarrassing- I did start writing this then – but at least I’m getting to it eventually!

There are absolutely native English speakers who are successfully homeschooling in Israel all the way up through high school.  So if homeschooling is important to you and so is living in Israel, they aren’t contraindicated.

Homeschooling has been something I’ve been passionate for so long, and continue to feel is the ideal option when the factors are right.  I didn’t have the factors in place in Israel to provide my children with the kind of homeschooling experience I wanted to give them, that I was previously able to provide for them.  I haven’t changed my beliefs about education, but since my circumstances have changed, I’ve had to decide in what framework I can now give them those things that are most important to me.

I’ve been hesitant to write about this because I’m the last person to discourage someone from homeschooling.  Realize this decision was personal and specific to me and the ages/stages of my children, as well as to our values.

Linguistically – Speaking the language of the country in which you live at a native level is something I value.  When we were in the US, I expected my children to know how to read, write and speak at a level that would allow them access to higher levels of learning.  Now that I’m in Israel, Hebrew is the language in the country in which I live and my expectations for my children in acquiring the language it to communicate at a native level, again with the ability to integrate into higher levels of learning.  I know a lot of Anglos are okay living in an Anglo area and if their kids don’t learn Hebrew well, that’s not problematic for them.  And there are Anglo homeschoolers for whom this likewise isn’t a priority.  That would be very problematic for me.  I don’t want my kids to be immigrants here long term.  I chose to move to a part of the country that doesn’t have a lot of English speakers, knowing this would make our short term adjustment to living here harder but it would be easier for my children in the long run.  Although my spoken Hebrew is good and my reading and listening comprehension is very good, I don’t have the ability to teach them Hebrew as a native could.  Though I don’t believe school is the only way to learn a language through immersion, it was an easy way.

Being put into a school environment as an older child who doesn’t speak the language is very challenging.  I had children in mid elementary and high school who had to deal with this, and  saw even my social and confident five year old in kindergarten struggle with this in the beginning.  As much as I would have loved to have homeschooled my younger children until at least first grade here, I decided against it due to the language factor.  After a lot of thought, I put my ds3 into gan this year.  It’s so much easier to learn the language at this age when even some children from Hebrew speaking homes aren’t yet speaking well than a year later as a four year old and I felt it was the kindest thing I could do for him.  (This wasn’t the sole reason or even the most important reason, but this is what I see as the main benefit.)  He enjoys going to gan but would prefer being at home, as would ds5, and I could certainly teach them much more.  But the quantity of what they learn wasn’t the issue.

Even though they are learning Hebrew at school, I still do some things at home with them to help them enhance their language acquisition.  The main thing I do at this point is that I read books to them in Hebrew – I read a sentence in Hebrew, then translate, then read the next sentence, etc.  This enables them to hear a range of vocabulary and to learn what it means in a safe environment when there’s no consequence to not understanding it.  It’s low pressure and we all enjoy it.  The key to this is to get books that are at a high enough level to be interesting.  The one that so far worked best was a novel in comic book style, so there were lots of illustrations to hold the interest of the younger ones while they listened (ds6 is the youngest for these books, I read simpler books with ds3 and ds5) and the plot line was sophisticated enough that one day even dd16 was sitting in on it!

The other thing is that we work on Hebrew reading – we took a long break from this but this past week we got back to it.  Reading well is a big part of academic success and though it’s normal for kids who are olim to take a while to catch up in this, I’d like to help them minimize the time that they’re academically struggling.

Socially – When we arrived, I saw that my neighborhood had very few children, which meant that meeting other kids at the local park just didn’t happen.  I quickly learned that social connections happen almost exclusively through the schools – meaning those who aren’t part of the school aren’t part of the social group.  There were almost no extracurricular activities where my kids could meet other kids in the charedi community.  I spent years building a social network for my homeschooled kids in the US, and there was no way that I could create something overnight for kids who were already in middle and high school.  While I think that peer socialization is drastically overrated, raising my kids in a new culture in isolation wasn’t something I felt was in their best interest.  I also live in a community where even very small differences make a big statement – big differences put you outside of the community altogether.

It’s interesting how many teens have told my kids they don’t seem like homeschoolers.  Why?  I don’t know where they got these perceptions since most of them hadn’t met homeschoolers personally and I’d like to think if they had, they wouldn’t have made this comment.  But the response my kids have gotten is that, “You’re not a nerd/you’re so with it/ you don’t dress like homeschoolers” etc. I am bothered the assumption that homeschoolers will be social misfits because it’s just so inaccurate.  Sure, there will always be quirky kids who won’t fit into the standard peg of society, regardless of where they are educated.

The assumption that kids who are homeschooled are losers or their parents are losers and that’s why they homeschool is just flat out wrong.  My kids – as do most homeschoolers – had a variety of experiences with people of different backgrounds and ages, and I felt very comfortable that they were socially integrating in healthy and appropriate ways.   However, when moving here they needed to learn not only a new language, but a new culture.  This is something I absolutely can’t teach them because it has to be experienced.

Now you could tell me, but there are other homeschoolers in Israel – your kids don’t have to be isolated or removed from Israeli society!  That’s true, but without a car and with a limited budget, getting together with other homeschoolers would be difficult and expensive.  There are no other homeschoolers in my city of over 50,000, certainly not any in my religious community where our children would most naturally seek out peers.

I didn’t want my childrens’ only social contacts to be with other kids that they could see – at best – once a month.  Since those contacts would be with English speaking children, it wouldn’t help them learn the language or culture.   And once again, without a car and a large budget, I knew I couldn’t provide them with the many enriching activities that were an integral part of our homeschooling for over a decade.  If I had a very different budget, this would shift things dramatically but I don’t and that’s my reality.

I miss homeschooling.  But I feel that I did the right thing for my kids taking into account the limitations of where we live, and they agree.  One thing that’s good about the school day here is that it’s much shorter than in the US.  Now that we’re over the first year of our aliyah, a question that I’m actively working on is, how to provide my kids who go to school with what I felt were the bigger advantages of homeschooling?  I’m working on this but probably won’t share about this for quite a while since it’s obviously going to be experimental!

(Edited Aug. 2017 – we began homeschooling ds5 and ds10 towards the end of the 2012 school year; they were joined by dd12 and ds7 for the following school year and all have been homeschooled since.)

Avivah

31 for 21 – A restaurant owned by young man with T21

Today is the tenth day of 31 for 21, a blogging effort to raise awareness about Trisomy 21.  Click here to check out other bloggers who are participating!

We all have a picture of what children will Down sydrome look like.  Most of us think we know what we can expect of them socially, academically and professionally.  I always made a point to smile at and thank the young man with T21 who bagged my groceries at the supermarket and thought how nice it was that the store owners were so progressive about hiring people with disabilities.  In the last three months, my estimation of what individuals with T21 can accomplish has shot up.

Tim Harris is a young man who was a high school homecoming king, a college graduate, and is now the owner and manager of his own restaurant – and he has T21.  Watch this beautiful 2.5 minute video or read here to learn a little bit more about this young man’s accomplishments.

I loved watching this!  People like this help change our communal expectations regarding individuals with T21.  And for me, as the mother of a baby boy with T21, it gives me tremendous hope and encouragement.

Avivah

31 for 21 – No regrets

Today is Day 7 of 31 for 21, a blogging effort to raise awareness for Trisomy 21.

So many times when people have a situation in which something has gone wrong, knowing that they did something wrong that added to the problem exacerbates their pain.  I’ve read several accounts of women who had babies with Trisomy 21, and they all went through a period of blaming themselves for something.  We moms can always find something to blame ourselves for!  Whether it’s not eating well or taking prenatals during pregnancy, feeling guilty about their negativity or ambivalence when learning about T21 or crying and being upset after the baby was born, there are lots of things that moms later look back on with regret.

I’ve thought a number of times about how grateful I am in this regard.  I have a tendency to have high expectations of myself, which makes it easy for me to feel like I’m not doing enough for my children.  So it’s especially amazing that regarding Yirmiyahu having T21 that I’m able to accept what I did throughout pregnancy as having been enough.

I was thrilled when I became pregnant, and although there are definitely some discomforts that come along with pregnancy, there wasn’t even one minute that I wasn’t grateful for my pregnancy.  My husband often remarked about how consistently positive I was, even at the end when I was having a lot of sciatic pain.  I had conversations in my mind every single day with my baby, telling him how much I loved him and later on when I started having premonitions about the baby having T21, added in the message that we loved him as he was.  I had a pervasive sense of emotional well-being and consistently positive thoughts about life in general and towards our baby.

On the Weston Price site there’s an article with a theory that older mothers have babies with T21 because of pregnancies that are close together, leading to mothers who are  nutritionally depleted.    My youngest child was over three when Yirmiyahu was born, so I had a solid block of time to build up my nutritional reserves before he was conceived and I don’t have guilt over this possibility.

I’ve been eating according as much as possible according in line with a traditional foods approach for years, and this pregnancy I was especially careful about what I ate.  Except for a few chocolate bars, my diet was excellent.  I took cod liver oil and early in my pregnancy, ate liver regularly for the iron.  In addition to this, I took homeopathic cell salts.  My general position is that it’s better to eat good quality real foods and supplementation has always been on the back burner for me, so it was unusual for me – a first, actually – that in addition to the above I took prenatal vitamins during this pregnancy.

My birth experience was traumatizing (for my husband, too) but one part of the unpleasantness that I’m grateful for was the extensive fetal monitoring at the hospital.  I haven’t had this kind of fetal monitoring since my second birth, and it’s not something that added positively to the experience, but the monitoring consistently showed everything progressing normally.  Yirmiyahu was born very suddenly at home (if you’re wondering how I labored in the hospital and then gave birth at home, you can read both parts of the birth story, here and here) and wasn’t breathing, and when I later looked back on this I didn’t have to wonder if this was a problem that could have been anticipated and avoided – it wasn’t and it couldn’t.

When we were told the news that our baby had T21 a few hours after he was born, along with the list of other things that were happening medically, it took me a very short time to process.  There are a number of reasons for this- I’ve shared about a couple of aspects of that, and another big factor is that as a mother of a large family, I know that every child comes with their issues.  I know right after finding out is a really hard time for most people and I feel very lucky in this regard that I was able to be happy with our baby as he was from the very beginning.  He was loved totally and fully from conception through birth and beyond, and as a mother I feel a lot of gratitude about that.

Avivah