Avivah Werner

Category: Parenting

  • What did I tell the grandmother whose children want to give up baby with T21?

    October is Down Syndrome Awareness Month and I’d like to share about a call I received this afternoon.

    The call was from a grandmother of a new baby with Trisomy 21. The baby’s parents want to give him up for adoption (it would probably be long term foster care) because the father says he is too sensitive for a child like this. Currently the parents are at home and the week old infant is in the hospital.

    Rafael - 10 weeks old
    Rafael – eleven days after homecoming

    She is very unhappy with their position and has unsuccessfully tried to convince them to keep the baby. The parents aren’t yet open to speaking to anyone, so I let her know that if some point they want to speak or come visit and meet our boys, I’d be happy to do that.

    The last time I spoke to a grandmother in this situation was two years ago, Baby M’s grandmother. One thing I gained from that very painful and drawn out situation that left me feeling like part of my heart was ripped out, was the increased ability to detach emotionally and release judgments of those choosing to give up their child with Down syndrome.

    I told the grandmother that anything I tell her about having a child with T21 is preaching to the choir – we’re in agreement.  If you’re wondering some of what I might say, here are a couple of past posts:

    What I would tell new parents of a baby with Down syndrome

    Questioning reasons for giving up a baby with Down syndrome

    Things we did to help our baby with Down syndrome thrive

    Rafael, two weeks after coming home
    Rafael, a week and a half after coming home

    What I feel is most important is not to try to convince these parents, who are right now in a state of shock and confusion. They need time and support to feel all of their feelings and to know that all feelings are allowed. They are understandably afraid of the unknown and overwhelmed.

    As a foster mother who was blessed to bring home a newborn with T21, I can’t tell you how much compassion I have for these parents. I sometimes think of the trauma that Rafael’s birth parents experienced and the difficult emotions that must continue to be part of their lives, whether repressed or expressed.  When parents give up a baby, the baby is gone but the emotions aren’t.

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    It’s hard to listen to people you love contemplating taking actions that you don’t support and can’t condone. But that’s what these parents need most right now – someone to really listen to them without judgment and without telling them what to do.

    Only when they feel truly heard will they be able to listen to and consider any other information or perspectives. Does that mean at that point that they will agree with the grandmother’s perspective and keep the baby?  No.

    We don’t listen to people with the intention to get them to do what we want. We listen to them because we care about their feelings and want them to be truly heard.

    Even when it’s hard.

    Especially when it’s hard.

    Avivah

  • In search of a school for ds12

    In search of a school for ds12

    The latest around here is that we’re looking for a school for my 12 year old son for this year. Yes, I know the school year has already started. No, it’s not fun trying to find a place for a student this age!

    Someone who knows my son told me, “I think any school would be lucky to get E. as a student, he’s such a special boy.” Yes, he would be an asset to whatever class he joins but he would have to be accepted to be an asset.  And that is the challenge we’re facing right now.

    The school I was interested in has a very full class. They also have a principal who is a wonderful person and who when meeting my husband, told him, “I think homeschooling is the worst possible educational choice.” Ahem. Oh, yes, and would you now like to accept our homeschooled child to your school?

    We’re being told that our son isn’t academically on par with the class in gemara (Talmud) and the gap is so huge that it would be a hopeless endeavor for him to catch up. This was based on a casual conversation in which the seventh grade teacher asked him about what he’s currently learning. It’s true that there’s a gap – he hasn’t yet started gemara and these boys started a year ago.

    My husband sat in on a class and is convinced it’s quite doable for ds to catch up. Since he learns with him regularly and not only knows his abilities but also has no desire to put our son in a learning environment that would be overly pressured and demanding for him, I trust his assessment.

    Though initially the seventh grade teacher said he would be willing to take ds12 if the principal agreed, the principal now says that the teacher says it would be too complicated to take him.

    Too complicated to take a very bright, motivated boy with a strong desire to learn, no behavior or academic issues to remediate and parents who have committed to supporting him in catching up? I don’t think they’re making excuses (at least I hope they’re not making excuses because I don’t like to be cynical). I’m sure they believe that a one year gap is just too much to bridge.

    I don’t think it’s too much.  And it’s not because I’m a pushy mother, because I’m not. I just think it’s a realistic challenge that he can meet.

    When we moved to Israel my then twelve and a half year old son was in a similar situation, but he had the additional challenge of not speaking Hebrew nor reading as fast as a native Hebrew speakers did. (He had the advantage of there only being one Talmud Torah school option so the school couldn’t easily refuse to admit him since where else would he have gone?) He spent the first year figuring out what was being said, he spent the next year – eighth grade – understanding the language as well as the content and excelling academically.

    A homeschooling mom said something to me that is very true and relevant – that they don’t have any idea what a motivated homeschooler is capable of.

    Someone else said something very true and relevant – in Israel the schools often won’t tell you an outright ‘no’ – instead they stonewall you until you give up.

    In any case, we’ve decided not to put all of our eggs in one basket. Though I really did feel this school was a good fit for us for a number of reasons, I have much more peace of mind when I allow G-d’s plan for me to unfold rather than pushing to get my plan implemented.  We’ve taken enough action on this front that if it’s meant to be, it will.

    So we’ve started looking into other options.

    One nice thing about these initial inquiries is that I may have found a school that could be a good choice for ds9 and ds11 for next year. That school isn’t an option for ds12 but knowing there’s an option like this for them it takes some pressure off of us to find a school for ds12 that would be a good fit for them all. (The three of them are very different learners.)

    I’ve been asked how I determine when to send a child to school. Well, for ds12 it’s a matter of him being extremely ready for the challenges and opportunities that school will provide, particularly with advanced Torah learning and I think he will thrive with some added academic challenge and stimulation.

    For the other two, I think they’ll also be very ready next year. But as much as them being ready…. I’m ready.

    shifting paths

    I’ve been homeschooling for a long, long time. For most of that time, I’ve really enjoyed it. (Let’s be honest, it’s not always a picnic!)

    But now, something is shifting in me. It’s not a feeling of burnout. It’s deeper and different than that. It’s a feeling of moving towards completion in this area.

    I’ve always said that I wasn’t committed to homeschooling forever, but that every year we look at what is best for each child, and that continues to be true. I’m not rushing to end this homeschooling stage of life, but simply sharing what has been an increasingly strong feeling over the past months.

    I’ll keep you posted on our current school search!

    Avivah

  • Rafael is standing! – video

    I haven’t yet taken a picture of our kitchen renovation, which is still in process and I’m wating until it’s a bit more complete before sharing. But you’ll get a glimpse of it in this short video on a busy erev Shabbos of Rafael standing up!

    Rafael is now 20 months old and is doing great in every way! His latest thrill is practicing standing up on the edge of the couch or bed (he climbs up himself), causing everyone in his vicinity to simultaneously gasp and lunge for him. He falls forward at the very edge and then looks at us all with a huge grin while we’re taking deep breaths to calm ourselves!

    You’ll see the grin I’m referring to in the video below. 🙂

     

    When I see children learning to stand or walk, what always strikes me is how they have an intrinsic desire for mastery. They don’t get discouraged that they can’t yet do it. They want to go beyond what they already know, and keep trying and trying until they do it.  And they enjoy it along the way!

    I’ve often thought how we could benefit by adopting a similar attitude to learning new skills, especially when we fall short. Rather than shame or blame themselves for not knowing how to already do it better than they do, these little learning dynamos just get up and try again with a smile.

    Avivah

  • Embracing transitions- renovations, slowing down, starting school

    Have you been wondering where I’ve disappeared to?? This has been my longest absence from blogging in twelve years!

    It’s been a busy summer and while there were lots of good things, it was unusually challenging. Our DIY renovation added a huge amount of work and upheaval – every single item from every single room in our home except one was moved and the new spaces for some of those things still aren’t ready for them.

    It’s been a big transition for us all.

    I enjoy doing hands on activities, but while doing the actual renovation work I still needed to cook, clean, do laundry (without a sink for two weeks, without a washer for two separate weeks), buy groceries, etc – while also needing to oversee the project, constantly buy more supplies (the workers in several building supply stores all know me by now!) and teach the younger boys how to do the various renovations tasks…

    I also still have these lovely children to be a mother to and that doesn’t mean constantly asking them to do yet another task or trying to meet their needs as fast as I can so I can get on to a job that is waiting to be done. My biggest effort in the midst of everything going on and all the emotions being expressed,was to still be a decent person to live with. That’s a big job when there is so much stress being experienced by so many people!

    As far as how things are progressing – the bulk of the main work is finished and the new kitchen is fully functional. Yay! (When the sinks were finally in I felt like I was living in luxury!) Yes, I owe you all a picture!

    There are still a number of small details before it will be completely finished. As much as I really, really want it all done, I made the decision to set further work aside until after Rosh Hashana. It was frustrating trying to get any work done with our youngest two boys around and when I tried I often had the feeling of two steps forward, one (and sometimes two!) steps back!

    In addition to working with young children around (have you ever tiled a floor while living in a home and keeping your children off those tiles for 48 hours while the glue and then the grout sets?), things kept happening that diverted my energy or physically made it impossible to move forward with the intended renovation work, day after day: several of the boys were knocked out by a stomach virus, a very sick baby for three weeks, falling on a nail and not being able to move one hand for a week, badly smashing a finger in sliding door, spending thirteen hours in Jerusalem at the emergency room with a child who got plaster in his eye (and having the car overheat on the way there and then got a flat tire on the way home)….

    There were so many unusual things happening one on top of another, that it became clear to me that Hashem (or maybe my unconscious) was giving me a message: slow down or I’d be forced to slow down.

    Though I wanted everything DONE – what I really, really needed was to put my endless list of things to do aside and give myself a mental break by not thinking about all that still needed to be done.

    Even with all of the challenges, I’m so happy to have tackled this project! By taking some time off from the work I’m able to breathe and look at what a huge accomplishment this has been instead of getting caught up in all the little details remaining.

    I’m really pleased with how the new kitchen is shaping up and how much more spacious our main area is. One huge benefit that I didn’t anticipate is that I can now be working in the kitchen and still be involved in whatever the kids are doing.

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    Last week Rafael (20 months) started at day care; it’s a wonderful program with full inclusion and he will have his own assistant for two hours each morning to help him participate fully in the activities. He will also be getting therapies there and the therapists will give instructions to his personal assistant, who will integrate their suggestions into her time with him as he does the group activities.

    This week Yirmi started school! I’m not one for taking first day of school pictures but fortunately for me, the mother of another little boy in his class took this one for us!

    Ds6 feeling shy and proud!
    Ds6 feeling shy and proud

    His teachers have all told me how impressed they are by him and what a pleasure he is to have in the class. And he loves it! It took a lot of persistence and advocacy to get him into this program (gan safa) which was sometimes emotionally wearing, but after the first ten minutes of being there with him, I felt so grateful that I stuck with the process. I think he’s going to gain tremendously!

    I sent Yirmi to a Hebrew speaking camp for a month this summer to help prepare him for school. His English comprehension is excellent but his Hebrew is minimal. I told his teacher that he doesn’t understand Hebrew yet, but yesterday she told me he seems to understand a lot of what is being said to him and responds accordingly.  I attribute this to him paying attention to tone and body language – but maybe his camp experience helped prepare him more than I thought!

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    So who does that leave homeschooling? As I enter my nineteenth year of homeschooling, we now have just three boys homeschooling (9, 11, 12).  I’ve had very little kids at home for throughout all these years and suddenly I don’t.

    I expected to feel some ambivalence and sadness at this transition point, but that’s not the case at all. I have so many things I’m constantly dealing with and I’m grateful to be able to slow down and move away from the very intensive schedule that I’ve had for so long. I’m ready to embrace and enjoy this new stage and give myself a pat on the back for all my efforts with each of them until now. Though I’ve often wished I could do much, much more than I do, I’m willing to let that go and instead focus on what I have done!

    My intention for the coming year is to be able to focus my time and attention on the boys at home in a way I haven’t been able to do when constantly stopping and starting to take care of younger children.

    But my even bigger priority is to arve out some renewal time for myself!

    Avivah

     

  • Now the plumbing work begins

    Now the plumbing work begins

    The main wall is down, the secondary wall is down but this is just the beginning of turning our boys bedroom into a kitchen!

    Today was the first part of the next stage – having the plumbing and gas lines wired in. We also are having additional electric outlets put in.

    It’s been a very loud and messy day and I’m so happy that I made arrangements for ds6 and ds18months to be at a camp for this period! They would have been so stressed and frightened of all the noise of the jackhammer and banging, not to mention that an active work zone isn’t a safe place for young children.

    Overview of the new kitchen in progress - day 1
    Overview of the new kitchen in progress

    When I first considered this project, I thought we’d have to move the water lines from the current kitchen across the main living area and through the new kitchen area. Then I wondered if perhaps we could connect it to the bathroom plumbing, which I was told was possible.

    The bathroom and laundry room
    The bathroom and laundry room – replumbed; gas and water lines also added

    That seemed a lot more convenient, but we’d still have to rip up the floor across our home in order to put in a new gas line.

    Then ds10 suggested we hook up the new gas lines to our laundry room gas outlet – brilliant! It didn’t occur to me at all  – that boy saved us so much time and work with his idea. So while we’ll need to replace the laundry room and bathroom floor, most of the floor that isn’t in the active work zone will remain intact.

    Here’s the hallway leading from the bathroom on the left to the new kitchen area on the right. The new plumbing lines are at the top, the new electric lines are lower down.

    renovation - hallway

    Now you can see the new kitchen area – there is plumbing for two sinks (red and blue piping); the yellow piping contains the new gas line. To the right you can see the drilled space for one of the new outlets.

    renovation - boys room

    Obviously there’s nothing left of this as a bedroom for the boys anymore! We moved their bunkbeds (the ones we built almost two years ago) temporarily into the living room and moved the rest of the living room furniture out onto the porch. Good thing we have a large porch!

    Three boys sleeping in their relocated bunks
    Three boys sound asleep in their relocated bunks in living room

    For day two, hopefully the electric outlets will be finished being installed and the plumbing will be completed. I’m planning to take the younger five boys on a day trip to the farm on Kibbutz Chafetz Chaim while this work continues in our absence, but need to make sure the boys’ closet unit is emptied before we leave. I knew we’d need to move it eventually but had hoped to be able to leave it in place a bit longer to minimize the upheaval and having even more stuff not in its place.

    For now things are very much in flux and while it’s a necessary part of the process, it’s definitely disconcerting to have so much mess with so many things out of place.

    Progress, progress! It’s true in the physical world and it’s true in the physical world that before things improve, they get a lot messier and more uncomfortable first!

    Avivah

  • And let the wall come down – demolition fun for the boys!

    And let the wall come down – demolition fun for the boys!

    After weeks of mentally working through lots of details to see if my renovation brainstorm was doable or not, our newest project has begun!

    I’ve been thinking and thinking how to increase the size of our main living area. While at 30 meters it’s a nice size for an Israeli apartment, it doesn’t feel especially spacious as our family continues to expand! I’ve had several ideas about how to maximize our  living space but vetoed them because all cost a LOT of money. But my latest idea actually seemed like a real possibility!

    Here’s the idea: my younger boys’ room is behind a shared wall with the living room. For a while I’d been thinking of knocking this wall down once my youngest daughter gets married, and then moving the boys into her room. But since she’s only 17 marriage isn’t on the agenda for a while and in any case, that plan would mean I would lose a bedroom, which I really don’t want to do.

    But…if I knock down that wall, and then turn the boys room into an open kitchen (and the kitchen into the boys room), the main area gets bigger, we don’t lose a bedroom, and the space becomes used much more efficiently.

    The current kitchen is perfectly sized for a bedroom, while the boys bedroom is a large, awkwardly shaped room. It doesn’t have any direct light – all light comes from the enclosed patio off of it that is basically useless for anything other than storage – who wants to walk through a bedroom to get there? By opening up this wall, the light in that room and the air flow in the main area become significantly better.

    Turning a bedroom into a kitchen and a kitchen into a bedroom is a big project. The plan is to keep the costs down by hiring out the the skilled work such as plumbing, electricity and laying gas lines, then doing all the rest ourselves. During my researching stage, it seems that just about everyone I mentioned my idea to was skeptical about our do-it-yourself intentions, which would be disheartening if I listened to all of those voices!

    I’m going to be reusing the cabinets from the kitchen that we put in three years ago, which are really good quality and I’ve been very happy with them. One big question I have is about using the caeserstone countertops again or not. They were so expensive and would be workable in the new kitchen but I didn’t love how they looked then and after three years still don’t like how they look!  (I’m thinking very seriously of building our own laminate countertops but am concerned about running out of time before I can finish them.)

    After all this thinking, the project has begun! The boys moved the set of bookcases that were on the wall I wanted to demolish – the plan was to clear the area so our handy man could take it down, but once it was clear they were disappointed that they weren’t going to ‘get a crack at it’. I then agreed to let them take a few swings at it using the heavy hammers I bought them the day before (I had them remove tiling along the base of the walls to prepare for retiling those areas). After all, doesn’t that sound like a good healthy outlet? (I did go over safety precautions and repeatedly told them ‘safety first’!)

    I didn’t think they would make a dent in a concrete block wall. After all, this is physically very strenuous work; professionals would bring it down using a power saw that made strategic cuts in the wall and then a full sized sledgehammer (which my kids would hardly be able to lift, let along swing!)

    I went out to do errands and came back an hour later to find two holes in the wall. It was so exciting for them and for me, too! I wish I had been able to get pictures of the entire process.

    They kept at it the next day for hour after hour until they had the entire wall down.

    Ds9
    Ds9 – after this picture was taken they finished taking down the wall to the left

    This was far from an easy task! The wall was mostly concrete block but at some point they ran into a huge horizontal pillar of solid concrete reinforced with rebar that spanned the length of the wall. I told them to hold off on knocking it down until I clarified if it was safe to remove it. I had already checked that the wall wasn’t a supporting wall, but what I saw led me to think that this was some kind of structural element.

    Ds12 swinging on the final piece of rebar enforced cement
    Ds12 swinging on the final piece of rebar enforced cement

    I asked our handyman about it and he said it’s structural for the wall itself, not for the building, and safe to remove. Safe, but it was an insane amount of work.

    Who did it, you may be wondering? Ds9, ds10, ds12, and ds16 helped out as well. They seriously know how to work, these boys! Not only did they do the demo using only hand held hammers, but they shoveled hundreds of pounds of broken concrete to load the containers for the construction waste removal company to remove. (So far we’re up to six full huge heavy duty ‘bags’ – here in Israel this quantity is known as a balla. It’s a LOT.)

    We also decided to take down a small wall that separates the living room from the hallway. That wall creates some privacy but it also cuts off some usable space in the living room and we have a different idea of how to keep the privacy while opening up the space. That wall was a much easier job, since it was drywall.

    Ds10 pounding a hole into the drywall
    Ds10 pounding a hole into the drywall
    Ds6 getting into the action!
    Ds6 getting into the action, banging away at the wall!

    This has been an empowering and enjoyable project for the boys, albeit exhausting! There’s something about doing a significant task and really putting yourself into it that builds up a child (and an adult, too!).

    Avivah

     

  • How to get kids to eat beans

    Whenever I post a weekly menu plan, there’s always someone who asks (and lot more people who are thinking!), ‘how do you get your kids to eat beans?? My kids would never touch that!”

    Here are some tips that work for us:

    a) When I add in ‘special’ or protein elements to a bean dish, that adds to the appeal. Hence a lentil salad would be ‘meh’, but when feta cheese is chopped up into the same salad it will be greeted with ‘yum!’ Chickpeas cooked with vegetables is kind of boring, but with a peanut sauce mixed in, much more appealing! Same thing with the burritos – by adding a little bit of shredded cheese to some beans and rice, it gets a significantly more positive reception.

    b) The form the beans are served with also matters – bean stews are seen as blah by my kids, but if I make the same mixture into a burger or loaf, it gets gobbled up.

    c) I usually add meat or chicken gravy or stock into the bean dishes that I cook to add a rich depth of flavor to the dish. I always save the gravy from roasted chicken for this purpose.

    d) It’s not enough to make the bean dish look and taste good if you have the attitude that your kids will probably hate it! They pick up on that and respond accordingly.

    Realize that beans are a kind of boring food – they don’t have much flavor on their own and need to be seasoned well. It’s also CRITICAL that they are cooked until completely soft. It is yuck to eat beans that are underdone and even a tiny bit of a crunch to them or even that mealy texture when they’re just cooked but not really soft!

    There’s no way to get kids used to eating any kind of food without giving them opportunities to have them!  If one attempt isn’t successful, it doesn’t mean they’ll hate all beans – it means you need to find a different recipe!  My kids have grown up eating bean dishes and as a result, even without integrating any of the tips above, will eat them willingly. I can’t tell you they wouldn’t prefer hamburgers (so would I!) but beans are a staple in our pantry.

    Avivah

  • Why do I want my son to attend gan safa?

    First of all, the exciting news is in – Yirmi has officially been accepted to gan safa!

    “Do you mind sharing a little bit more about how and why you decided to put Yirmi into the school system and not to homeschool him at this point?”

    When it comes to homeschooling, there’s what I want to do and then there’s what I  actually do. If the two lined up, Yirmi would continue homeschooling.

    There are two things that currently concern me: 1) acquisition of Hebrew language and 2) acquisition of friends.

    I live in RBS, the largest English speaking community in Israel. It has some wonderful unique features that make living here a pleasure; the flip side is that as a homeschooler Hebrew is something I need to work to expose my kids to, and I’m not finding this easy to do. The most effective way to learn Hebrew is by being in a Hebrew speaking environment and having Hebrew speaking peers. I’m not providing that.

    Secondly, though Yirmi enjoys playing with his brothers and their friends who come over on most days, he doesn’t regularly play with friends his age. This isn’t because there is a lack of kids around or because he doesn’t play appropriately (he does), but because I don’t get him out in the afternoons. I’m not regularly setting up the playdates that mothers have invited him to, I’m not getting out to the park  – while I’m not beating myself up for this, I’m being honest about my limitations because our kids need us to be honest about what we can really do, and to find alternatives if we can’t do it.

    After years of being the mom who took her kids everywhere, who took her kids to the friends they were invited to (since most mothers would rather invite kids over than go out), who after moving to Israel took her kids to the park daily for years… I’m tired. And while I’d like to have more energy to take him out daily, I don’t.

    “Can you share why you prefer gan safa to special ed?”

    While gan safa is officially part of the special ed framework, in my area it is filled with typical kids who have language challenges of some sort.  (It’s not coincidental that our sizeable English speaking population has a high number of kids in gan safa – in other areas I’ve been told that gan safa is filled with kids with significantly more learning challenges.)  Kids who are cognitively more limited are put into a different gan system (gan ‘pigur’); kids with autism are put into yet a different system (gan tikshoret).

    I’d like Yirmi to participate in an inclusive environment as much as possible. With the law that just passed here in Israel, I don’t know if it will be realistic anymore once he gets into grade school.  It will unquestionably be much, much more difficult than it has been for kids with special needs until now, and it hasn’t been a walk in the park for any of them even with favorable laws to work with. We’ll cross that bridge when we get to it. But at least for now, he can benefit from a mainstream environment.

    I’ve been asked why I don’t want to put him into the typical gan classroom. Going into school will be a huge transition. When taking into account not yet speaking Hebrew and having expressive language delays, it would be overwhelming for Yirmi to be in a class of 35 kids. I think all kids benefit from being in a smaller class environment, and gan safa is usually a class of about 12 kids with three teachers. Honestly, I think all kids would do best in an environment as supportive as this, but certainly it sounds like the best fit for him at this time, when taking into account the various options.

    I don’t have any information on the specifics of the gan yet, but hopefully this will be a wonderful new experience for Yirmi!

    Avivah

     

     

  • Becoming the squeaky wheel for the sake of my child

    It’s a busy 3 week period for our family – a new grandchild, my oldest son’s first anniversary, my son turning 16, our 26th anniversary, today Yirmi turned 6 and in two days my oldest will turn 25!

    I started the morning by getting the super good news that Yirmi was accepted to gan safa (kindergarten with a language focus). (I mentioned a month ago that I had a lot of conflict about this decision and have gone back and forth for months about if I really want to put him into the school system. I decided that if he was accepted, it would be beneficial for him.) It’s been a couple of months since I met with the committee; I called several weeks ago to verify his placement and was told he probably would be placed in gan safa. But, she added, call again in a week to confirm.

    So I tried to call again. And again. And again. This office is notoriously difficult to get hold of. Yesterday someone answered and told me to call the secretary of the person in charge of placements. I called her repeatedly. It went to voicemail every time.

    So this morning when the head of the health clinic asked what was happening and offered to call using the personal cell number of the person I was trying to reach, I was happy to accede to her offer! And very delighted when I got the good news that he has been accepted and things are in place for him academically for the coming year.

    Why, I wondered to myself, was I so worried? ‘You see, Avivah,’ I said to myself, ‘everything doesn’t have to be so hard. You were worried for nothing.’

    Several hours later I got a call from someone from the office of special education in the city who after spitting out her name rapid fire, wanted to know where my children attend school. When I told her they were homeschooled, she asked about our religious affiliation. I told her I wanted to know her reasons for asking before sharing any of that information. She refused and after I refused again, she told me it’s about Yirmi’s kindergarten (gan) placement.

    I knew it.

    Call me paranoid, but telling them my religious affiliation was a trap that I wasn’t falling for. Here’s why. If I tell them that we’re charedi, they’ll tell me no charedi gan safa will take children with Down syndrome. If I tell them that we’re dati leumi, they’ll tell me they’re full and don’t have room, or that the dati leumi schools won’t accept him since we’re charedi (they already tried this tact in our face to face discussion).

    So I told her we’re in the middle and either choice would be fine for us, that what matters most to me is that he’s in a framework that appropriately meets his needs. She really wasn’t happy with my answer.

    She asked for the name of the school that my high schooler attends, the better to pin a religious label on us. I couldn’t help but laugh at the perplexed silence following my answer, because it’s a middle of the road school and it didn’t help her put us in the box. “Oh, so you really are in the middle”, she responded slowly.

    So much for my happiness and relief of the morning to know his school placement had been finalized. No, she said very definitively, Yirmi absolutely hasn’t been placed in gan safa and no one was authorized to tell anyone about his placement and don’t you know all the classes are full already? And lest you think I can’t hear between the lines, it means too full for a child with T21.  Their lack of space really isn’t a compelling argument to me, since I gave in my application very early (ie before most other parents). While this year there are honestly a larger than usual number of applicants to gan safa, ‘lack of space’ simply means they’re giving the spaces to kids they view as highest priority.

    It would be really nice to feel that those in charge of making these educational decisions care about my child.  I don’t have that confidence. After all, they’ve never seen him. (Knowing that putting him in an inclusive school environment means that I’ll be spending the next 13 or so years of my life fighting for his basic educational needs to be met has been a huge part of my conflict about putting Yirmi into the school system versus continuing to homeschool him. Maybe, I’ve wondered, I should save my energy to spend on educating him myself and we’ll all come out ahead?) I suspect their decisions are mostly about funding.

    I don’t like to use my energy in a negative way and I’d really prefer not to expend so much energy in advocacy, but it’s all about being the squeaky wheel if you’re a parent of a child with special needs – unless you want to put him in the special ed framework. And things just got a lot harder today, when a law passed in Israel that removes additional funding for a child with special needs who is in an inclusive educational framework; they will now get the same funding as any other student.

    (Here’s how that works and why it is so damaging – a child can be successfully included when he receives extra supports to be successful in the mainstream classroom. Take away the extra supports and he will fall behind and will then have to be placed in a special ed setting. Where his school will then receive full funding for him.)

    On a more positive note, today we were offered a slot for a new speech therapist to work with Yirmi. (The first therapist didn’t feel she was making progress with him and that he’d do better with a therapist who had more experience working with children with T21. He was then put on the waiting list for the more experienced therapist.) When I say we were offered a slot, that sounds rather magical, doesn’t it? What it actually means is that I repeatedly approached them and told them it wasn’t acceptable for an extended period to go by while we waited for his name to reach the top of the priority list again.) I did again this morning when the director was there, and she pushed him to the top of the list right then. The squeaky wheel gets greased.

    On another lovely note, we celebrated Yirmi’s sixth birthday with a barbeque dinner with family and friends. (After closely observing ds9’s birthday party, he was very clear about what he wanted! He requested a specific menu and went in person to invite a couple of neighbors to attend.)

    He’s growing up so much. There have been concerns over the years that have disappeared, and others that I still have that I need to remind myself to take a long term view on and not get uptight about. And even more than that, not to blame myself for not having done more (because that’s the road I go down…) – like that he’s not reading yet because I wasn’t consistent enough. (The irony is that the two brothers ahead of him are both very late readers and I never had this guilt with them!)

    I often marvel at Yirmi’s depth of sensitivity to the feelings of others and love seeing his full-hearted acceptance and love of those who are in his life. He loves learning and is always ready to go on an outing or have a new experience. He’s a great kid and continues to enrich our family!

    Avivah

     

  • Pictures of my new granddaughter

    It’s taken a while to get these pictures up of our new granddaughter to share, but I finally have some!

    I pasted in a picture last week but was notified by my married children that it’s not showing up. Sorry about that – it wasn’t intended to be a teaser! (It shows up fine for me.) I’ll make up for it now by sharing a few pictures!

    Here are a couple of pictures from my first meeting with my new granddaughter, the day after she was born.

    yael and a 2 y and a 1

    When the baby was a week and a half old, I took four of the younger boys to meet her. (At this point, only ds16 and ds1.5 haven’t yet met her; the older kids all went to the hospital to visit.)

    Ds12 with his new niece
    Ds12 with his new niece
    Ds9 and his niece
    Ds9 and his niece
    Ds10 with niece, with ds5 in the background wondering when he'll get a turn!
    Ds10 with niece, with ds5 in the background wondering when he’ll get a turn!

    And now, bliss! Yirmi finally gets to hold his new niece!

    Finally, his turn! Ds5, a proud new uncle!
    Ds5, a proud new uncle!

    She slept through all the transfers from one person to another. That newborn stage of deep sleep doesn’t usually last too long!

    For those of you have been reading this blog for a while, you remember my referencing of the littles, the middles and the bigs? The ‘littles’ were the third group of three children born close together in our family, and they’ve grown up while I’ve been blogging these last (almost) 12 years!  Sometimes I look at them and wonder when they got so big.

    Me with the 'littles' and our newest addition
    Me with the ‘littles’ and our newest addition

    I don’t have any insights on being a grandmother yet, sorry! It’s interesting to hold a newborn who is related to me, and yet not be responsible for her care. What is really beautiful is to watch my son and his wife shift from being a couple to being a family.

    Avivah