Monthly Archives: April 2013

Taking the next step with our homeschooling plans

Today I did something major.  Something that I’ve been planning for months, from almost the beginning of this school year.

Today I submitted the request for a permit to homeschool to the Ministry of Education for this year for ds10, along with a notification about homeschooling dd12, ds10, ds7 and ds5 for the coming year.  (I didn’t include ds3 – almost 4 – on this since the legal age of compulsory education is 5.)

This took a bit longer than  I planned since a friend’s husband was translating what I wrote for me, which in and of itself was very nice since he’s so extremely busy.  But then some important things came up for them, the kind of things that you put everything else on hold for – and in spite of having every reason to tell me they’re sorry but they just can’t do this, they didn’t.  This stayed on their list of important things to do because they knew it was really important to me.  When her husband handed the two typed pages in Hebrew to me, he said it was very convincing, so much so that he was almost convinced (about homeschooling).  :)   He did a fabulous job translating and I’m really, really very grateful.

I’ve been really antsy – well, stressed is more accurate – about getting this in.  The stress isn’t regarding the application for next year but for this year, since ds10 has been withdrawn from school and this paperwork is supposed to be submitted simultaneous to his withdrawal.  The local authorities aren’t familiar with how to deal with homeschoolers, which I already knew since I discussed it with them at the beginning of this year – it seems I’m the first person they’ve ever dealt with about it – and I wanted to have the paperwork submitted to the main office in northern Israel before they contacted me again, so I could tell them everything was being processed.

Now we have to wait to receive our permit, a process I’ve been told will take several months.  Hopefully it will get here before the coming school year.  Along the way I’ve also been told the local truant officer will want to have a home visit.  I’ll let you know about this when it takes place – that’s something I’ve never had to do before.

My decisions regarding this current school year have all been part of my plans to homeschool for the coming year.  We initially didn’t plan to homeschool the older two kids but that decision came with time over the last few months, observing what they were getting in school and evaluating if we could better at home.  It’s been a big thing on my mind for so long and I’ve hardly mentioned it to anyone, so it’s nice to finally be able to share it with you!

If you have questions about any aspect of this decision, please feel free to ask in the comments section below!  What, why, when, how, whatever!

Avivah

Yirmiyahu’s latest accomplishments!

This has been a very exciting week and a half for Yirmiyahu!

Yirmi, 9.5 months

One of the challenges of T21 is hypotonicity, which means that he has low muscle tone.  For this reason, children with T21 have to work much harder and it takes them longer to do the things that I took for granted with my other kids.  With Yirmiyahu, even our youngest (almost 4) is excited about his accomplishments!  All of this is even more gratifying since Yirmiyahu became extremely hypotonic when he got so sick; he lost all muscle strength and control for a while, and it’s really wonderful that’s he’s back on track.

As Yirmiyahu approaches his ten month birthday, here are some things he’s doing.

Firstly, as of a couple of weeks ago, he independently holds his bottle and feeds himself.  We worked on helping him keep his hands on the bottle for months, and it was really nice when he had the muscle strength to be able to do this.  We hold out his bottle in front of him and let him take it himself and put it into his own mouth – this is really cute to watch.

Secondly, he began rolling from his back to his stomach.  He’s been rolling from his stomach to his back since he was two weeks old, and from his back to his side for months.  But until this week he needed a very slight assist to make the final turn from his side to his stomach.

He was moving around on the floor, but now it’s noticeable – he turns himself totally around in a circle (180 degrees), moves backwards, and inches forward.

Before he went to the hospital, he was able to hang in the air supporting all  of his weight while holding onto our thumbs.  This was a big deal – when I first read about this exercise I couldn’t imagine him ever being able to do it – but he did, until he was hospitalized. Then he was too weak.  That is, until this week!  He’s getting strong again!  This is important for his grip and will later assist in his fine motor skills. (This was something we’re doing based on Glenn Doman’s work.)

And he now sits totally independently without support!  (I asked dd to hold her hand behind him as a precaution while I took a picture so that he didn’t suddenly topple over.)

Doesn't he have good posture?

Doesn’t he have good posture?

He wasn’t doing any of this (except the bottle) a week and a half ago when we took him to Shalva in Jerusalem, and I’m looking forward to them seeing his progress!  (Since they understand the challenges of infants with T21 as well as what a normal timeframe for various accomplishments is, they’ll be much more excited about this than his regular therapist.)

It’s also gratifying since we’ve helped him develop physical strength and development of the core muscles (that are needed to sit or turn over) by giving him lots of time on his tummy – not what his therapist recommends, but his results are better!  She’d like to see him practicing standing for at least an hour a day, but our goal isn’t for him to stand until he has the muscle strength to support himself well.  This was our goal with sitting as well – we felt that when his muscles were strong enough, he’d sit, and so it was!  (For you homeschoolers out there, you may be reminded of things I’ve written about teaching children to read and you’re right, it’s a similar philosophy in a different framework).

The next major goal is crawling, which he’s already showing the beginning signs of.  This is something his regular therapist wants to forgo – she wants to work on standing and get him ready for walking – but it’s so critical to his development that there’s no way we’re skipping that.  Lest you think that we’re tightly focused on his physical accomplishments and constantly doing therapy with him – we’re not.  We’re enjoying every day with our delightful Yirmiyahu!

Avivah

A difficult Lag B’omer in Meron

Last year, dd18 and dd16 went to Meron, the burial place of Rabbi Shimon bar Yochai, for Lag B’omer.  Meron is a quiet, small village the year round, but come Lag B’omer and it’s the place that everyone wants to be (except for people like me, who intensely dislike crowds and find just the thought of being there stressful), with about 200,00 people visiting.  Their experience was very positive and when he heard about it, ds14 at that time asked if he could go this year.

I didn’t agree so quickly.  It’s a hugely happening place and there’s a lot that goes on, most of which is unmoderated and some of which is problematic, so I was hesitant to let a young teenager go.  However, after discussion with ds14 about my concerns I agreed to let him go with several friends, and dd16 went with her class.  They left on Saturday night, and told me they’d each call me separately to let me know when they’d be home.

We woke up this morning at 7 am to find ds14 asleep on the living room rug; I was happy to have him home. At about 8:30 am, dd16 called to say they were waiting for a bus and there were at least four thousand people also waiting for a bus  – no buses had come since 5 am.  She said she thought within 2.5 hours she’d be on a bus and later told me she thought she was very much overestimating, but she wasn’t at all.  Not at all.

It’s hard to describe how crowded it is in Meron on Lag B’omer.  I’ll share just a couple of anecdotes, one from each of my kids, to give you an idea.  Dd was near a woman on a cell phone, who she heard finish her call saying, ‘Okay, I have to go rest now.’  How could she go rest when it was too crowded to move?  The woman put her head down on the shoulder of dd’s friend who was standing right next to her!  After sleeping there for half an hour, she woke up and thanked the girl, telling her what a good deed she had done.   Ds14 told me that he put his arm out in front of him at one point, and then the people were wedged so tightly that he couldn’t pull his arm out from the crush of the crowds.  You understand what it means to be carried by the crowd when you’re at Meron.

Today Meron turned into a disaster zone the likes of which hasn’t been seen for years and as I write it is in the middle of the crisis.  Ds got out before everything fell apart, but even at 3 or 4 am when he left, things were getting hairy.  While he was waiting for a bus, there was a request of the crowd if there was anyone knew how to drive a commercial vehicle.  There were a number of empty buses that were parked there but they hadn’t arranged to have enough drivers available.  Someone from the crowd said he could, so he became the driver of ds’s bus, with passengers directing him where to go.  Since he didn’t know how to work the money situation, he was told to let everyone on for free, then later on the highway, all passengers had to disembark and go into a makeshift office (a bus with the seats taken out) to pay for their trip.  (This happened to many buses throughout the day, not just this one.)

But he had it easy.  He left when it was dark and cool, had a relatively short wait, and got home.  Not so those who were ready to leave just a couple of hours later.  Thousands of people were waiting for hours (I was told it was close to 100 degrees midday) in the blazing sun with nothing to eat or drink.  For some reason, the buses were delayed for hours and and when they finally began to arrive, there were way too many people and not nearly enough buses.  The police were there to control the crowds but it was sheer havoc – pushing, shoving, yelling, people jumping through bus windows in order to get on.  Dd said it was very sad that it was a situation of the strongest getting on and the weaker people being pushed to the side.

She also said that she thought it was incredibly irresponsible of parents to bring little children. As they waited for a bus, they saw stretchers with little children who had passed out being carried by, and repeatedly heard announcements over the loudspeakers about children who had been separated from their parents.  Even without the situation today, the crowds there make it unsafe for little children.  As the day went on (thankfully dd got out after four difficult hours of waiting), many people began fainting due to the heat and a lack of water.  I can’t imagine what the minimal bathrooms were like – dd said they were in horrible shape when she was still there.  I was so thankful that she was home, as just listening to her descriptions of what was going on was alarming (I’m not sharing about all of it because of the length).

People on her bus home were saying they never wanted to go to Meron for Lag B’omer again, but truthfully I think this year was a fluke. They plan for these crowds every year and every year it’s very, very crowded but manageable.  Usually there is plenty of water and food, buses come regularly, and things are super crowded but it’s a positive experience all around.

Well, I’m going to take the kids to a bonfire now at a local yeshiva to finish off our Lag B’omer!

Avivah

Why use the term Trisomy 21 rather than Down syndrome?

>>Why do you use the term Trisomy 21 rather than Down syndrome? Do people even get it?<<

The decision to use the term Trisomy 21 on my blog was initially based an intuitive feeling rather than well thought out reasoning.  This in part was probably because this was the term used on the sites and blogs of those whose approach towards their child with T21 I had an affinity towards.  These parents are all proactive, believe in the inherent intelligence and capability of our children, and are dedicated to doing whatever they can to help their children overcome the various challenges that come along with T21.

But the decision to continue using this term was based on history and my feelings about that.  In 1866 Dr. J.  Landon Down identified a number of characteristics that this group of people often share, and the syndrome he noted was named after him; hence Down syndrome.  The physical symptoms he noted were accurate, but his ideas about what led to this condition were not.  He attributed the condition to a ‘reversion’ to the ‘mongoloid race’ and that the evolutionary process had reversed itself and these people represented a backsliding from the superior Caucasians to Orientals, at that time viewed as inferior.  This was a racist perspective that was reflective of the times during which he lived but is not at all in line with our beliefs nor our knowledge today.  Interestingly, after his death one of his own grandchildren was born with Down syndrome – it makes one wonder how different the conclusions he might have come to would have been had he been alive at the time of  his grandchild’s birth.

For close to a century those with Down syndrome were institutionalized, ignored and considered unworthy of existence.  (Well, unfortunately this last one is still very true today, which is reflected in the 90% abortion rate of babies with T21.)  These children do have unique challenges in various aspects of their development that need to be mediated in order for them to maximize their potential.  However, being institutionalized at birth and ignored for their entire upbringing except for the most basic of physical care wasn’t conducive to overcoming their inborn challenges, and not surprisingly, these severely neglected children grew up very underdeveloped cognitively and physically.  (I say not surprisingly since all children raised in institutions and ignored for throughout the course of their lives grow up with severe delays.)  Unfortunately, the impression most people have about people with Trisomy 21 is too often based on the Down syndrome stereotype that we are moving past in our generation.

What caused the condition that was originally termed Down syndrome has been shown to be not at all related to morals (as assumed by Langdon Down) but to genetics, when a baby is born with three copies of the 21st chromosome rather than two.  Trisomy 21 is a term that accurately describes the medical reality.  When you hear the term Down syndrome, that too frequently conjures up a negative picture, and it is this picture that terrifies parents when prenatally they are told their baby is at risk for T21 or after birth it is confirmed.  This picture is being redefined as our children now receive the care they have always deserved but have been denied for so many years.  Today’s children with T21 will be accomplishing things currently assumed to be impossible or at best unlikely, and I look forward to seeing significant advances in the accomplishments and integration of individuals with Trisomy 21.

Yirmiyahu is part of this growing group of amazing individuals with T21 who have a bright future and on this blog this will continue to be the term that I use!

Avivah

Making final decision regarding high school for ds14

Do you remember when I wrote about the new yeshiva high school that was planned to open in Karmiel for the coming school year?  This was a very exciting option for our family since I’m strongly against sending high school age children to dormitories and there are no suitable local options for us in northern Israel.

Well, right after dh left to the States I got the news that the school won’t be opening.  It has something to do with some technicalities with the municipality.  I didn’t want to think about this information for a week.  This was a huge disappointment to me.  Huge.  Not just regarding ds14, but for the next five boys, particularly in light of my homeschooling plans since having a relationship with a high school and then enrolling a homeschooled son from the same family is very different than approaching a school that doesn’t know you or your family.

If something isn’t meant to be you can’t make it happen.  So we had to adapt, but I needed some time to mentally adapt.  Fortunately, we have choices.  Ds14 was accepted to the school of his choice in the center earlier this year and they really want him.  That’s a nice situation to be in.  This is the place where he scored the highest of all the approximately 100 incoming applicants on the testing, but ds is also a really great kid and I appreciate that they recognize that.  We told them that if the local school opened we’d be sending him there but if it didn’t we’d send him there, and they held a spot for him just in case.

There’s also a yeshiva in Haifa that has accepted him.  This was kind of funny since he didn’t apply there!  Months ago this yeshiva was having an in-Shabbos for potential students, and ds was asked by a teacher in his school to accompany another applicant who had made aliyah about nine months after us and didn’t yet speak Hebrew well.  Being the suspicious person that I was at the time (this is when we were getting pressure to send ds to a non-bagrut yeshiva), I told dh they were trying to get ds to that yeshiva and were pretending it was to help someone else.  But it actually was to help someone else and I was being overly sensitive.  While he was there the boys in the yeshiva told him the boy he was with wouldn’t be accepted (because he’s a member of a non-litvish religious group).  So ds went to the rosh yeshiva and spoke to him about this kid, telling what a great boy he was and why they should accept him.

Well, they still didn’t accept the other boy (which I think was a good thing for the boy, since he would be better off in a school more in tune with his family’s traditions).  But a local friend who has a son in that yeshiva told me the rosh yeshiva called them and said he was so impressed with ds that they wanted to find out how they could get him to attend their yeshiva!

There’s also a typical charedi yeshiva here in Karmiel and another one in Rechasim which would both be options if we didn’t care about him getting a secular education.  But we do and in any case they are both dorming schools as well.  Months ago when we were talking about all the options we discussed sending him to the Karmiel yeshiva, since we thought it was likely they would agree to let him sleep at home.  But he’s not interested in being there, and in any case by the time he’d come home at night it would be 10:30 pm and he’d have to be back by 7 am, so we wouldn’t see much of him anyway.  The one local non dorming school that we considered is in Nahariya but he isn’t a good match for the student body.

So this week dh called the first yeshiva and told them that ds will be attending.  Dh and I feel good about it – as good as I can feel about a dorming school – and ds also feels good about it.  In addition to already having met the rosh yeshiva and mashgiach and having a very nice feeling about both, he’s toured the campus and met a bunch of students, who were all friendly to him.  His local friend has reassured him that he’ll do well socially for several reasons.  So while it will be a new and different situation, he has a positive feeling about it.

One thing that’s nice about all of this is to finally have a decision.  We’ve been waiting in limbo since December to see what’s going to happen with the opening of the new school, and now we can finally move forward with a decision.

Avivah

Why live in Israel if you want to stay American?

>>Why do you wish to live in Israel, if you want to stay American?<<

This wasn’t a question asked specifically to me, but a sentiment I’ve seen expressed a number of times on aliyah related discussion lists.  And I’m going to address it now because I think there’s an underlying presumption that needs to be discussed.

The question is applied to so many issues: why do you still buy your American brand foods or clothing?  If you want to live in Israel, you should live like an Israeli.  Why do you want to live in an Anglo neighborhood?  If you want to live in Israel you should live like an Israeli.  Why do you speak to your children in English?  If you want to live in Israel, you should live like an Israeli.

But is this really so black and white?

Here’s a comment a reader left a number of months ago along these lines, which I chose not to respond to at the time.

>>If you wonder why american olim do not feel part of the community, it’s because many are unable to adapt to society. You want to bring America with you and not let go.<<

We really aren’t a family that’s insisted on maintaining our American standard, not physically and not psychologically.  We didn’t make a lift – all of our furniture and appliances were bought second hand in Israel after we arrived.  I’ve bought the typical Israeli foods and household products from day 1.  I don’t feel the need to go to America and stock up on all the material things that are more expensive here (though I wouldn’t mind hitting the thrift stores for educational games if I were there!) – we buy what we need locally.

We moved to the opposite of an Anglo bubble.  My husband and I both speak Hebrew – I even speak to my kids in Hebrew sometimes (just because it’s fun).  My husband works for an Israeli company.  We don’t talk to each other or to our children about how much better America is – there are things that are better about being in America and things that are better about being here, but we chose to move here because we feel this is where we can have a higher quality of life and that’s our focus.  And at the same time, I don’t assume that to be happy here you have to give up things that have some kind of value for you (assuming you can afford them).

I didn’t move to Israel to become Israeli.  I’m happy being who I am.  I moved here because I wanted to live in Israel.  And I bet many people would say the same thing.  This country is filled with immigrants from many countries, and integrating doesn’t mean giving up everything that was meaningful to you in the past.  I think it’s helpful to have realistic expectations and an appreciation regarding your new country, so you don’t get stuck insisting ‘the old country’ was so much better, negatively comparing Israel to American whenever a difference comes up.  But if you want to buy a certain kind of coffee or chocolate because it has a value for you, or bring all of your things with you from the US – go ahead!  If these aren’t my or anyone else’s choices, so what?  When moving to a new country, there’s so much that is unfamiliar, so many things we have to struggle through, that it’s very nice to have something that stays the same, something that feels stable and consistent.

I’ve given a lot of thought to the concept of integration, which is what I think people are really expressing concern about when they ask the questions like above.  You can integrate into this culture even if you insist on doing all your shopping in America on your yearly summer vacation. You can integrate if you don’t send your three year old to gan (or elementary or high school) or insist on speaking only English in your house.  You can integrate if you live in an Anglo bubble and if you don’t speak Hebrew well.  My mother moved here less than a year ago – she often says it’s the best decision she ever made, she’s really happy here – and her Hebrew isn’t good at all.  Does her lack of fluency mean her aliyah is less meaningful than someone who acquires better language skills?

There are different levels of integration, and it’s a mistake to be so rigid about what integration looks like that we minimize the efforts of all of those who have moved to this country and are working as hard as they can to make a meaningful life here.

Avivah

Taking ds10 out of school

I did it!  I finally took the first official step towards homeschooling ds10!

This has been a long, long time coming.  When I enrolled him in school a year and a half ago, I had very strong hesitations – I wasn’t sure if I was putting him a situation that would be a challenge he could grow from or putting him into something so difficult it would be damaging.

He’s a very sensitive and caring boy with deep thoughts and feelings – one day he’s going to be an amazing husband and father.  He has such a good heart and combined with the development of his strengths, he’s going to be a wonderful young man.  He already is a wonderful boy!  But fifth grade isn’t really a kind and gentle place, and isn’t kind to kids like him.  You need to be fast moving and athletic and good with a quick joke or retort – and he’s not.  You have to be able to not show your hurts when people make fun of you and say how stupid you are – but he does.  And that’s where the visible problem was, that he would tear up in class when he felt very frustrated, and twice he screamed when he was totally overwhelmed.  The invisible problem was the pain of being in a situation in which he felt unsafe and uncared about – it’s hard when you’re constantly made fun of and put down, where you’re used as an example of someone incompetent in some area – eg, “What, you don’t know how to do that? Even so and so (ds10) can figure that out!”

I’ve tried to encourage him and spend time building our relationship and building him up.  I tried to help him focus on his successes and reframe the hard situations.  It’s taken a lot of energy but it was worth it because he’s important to me, and until this year it was working.  This was also thanks to a very sensitive and aware teacher last year, who didn’t judge him and looked for ways to build him up.   But then Yirmiyahu was born and life got busier, and I couldn’t keep doing all that I did.  And the connection with his teacher is also very different, which is a major factor.  So this year has been a different story.

Months ago I met with the principal with the intent to pull him out of school.  But the principal was so forthcoming and desirous of helping that I agreed to leave him there and work with them to find a way for him to be successful.  It’s still not easy at all.  I don’t know if it’s better than it was months ago.  He shows his frustration or sadness less, which is considered progress to everyone else, but to me I’m concerned that he was becoming emotionally hardened to his inner vulnerability.

Today I met with the principal again.  Ds10 has been home for two weeks and I should have met with him sooner but it’s honestly been very, very busy and so I haven’t.  I can’t say enough positive about this principal.  The only reason I wouldn’t want to homeschool ds10 is because he’s such a wonderful principal, so caring and really tries to find solutions to help every child, and I didn’t want to tell him I was taking ds10 out.  Today he also extended himself with ideas about how to build an individualized plan to help ds10 together with the help of the psychologist we’ve been consulting with privately regarding this situation (who months ago recommended homeschooling).  I’m still really pleased with the school and their willingness to work with us; I have nothing bad to say and would continue to recommend it.  But this time I told him, no.  We’ve tried and we’ve tried and so much energy has gone into just keeping him in school and I don’t want to keep investing more energy in this effort.  When he doesn’t go to school, his outbursts of frustration, his crying about seemingly nothing, his passive aggressive behavior toward his younger siblings – it all disappears.  It’s obvious to his older siblings without being told when he’s not in school for a day, because he’s happy.  He’s happy and helpful and relaxed and a great older brother…. really a pleasure to have around.

A couple of days after dh left to the US, ds10 came home very upset about something, something legitimately disturbing.  And I finally said, why am I trying so hard to keep him from feeling like a failure when at home without even a fraction of the effort on either of our parts, he can feel good about himself?  I’ve thought this a number of times, but I kept thinking we just have to get him through the year and then we’ll homeschool him next year.  But now with my dh gone my time and energy are maxxed out- I’m grateful I can do all that I do and that things are going so well.  But I have limits., and I finally said, that’s it.  I just don’t have the extra reserves to pour into the school situation.  The price is too high and the payoff is so tiny.

I spent hours a few days ago crafting the first part of our application to homeschool, listing our reasons for wanting to homeschool.  A friend will be translating it for me this coming week, at which point it will be submitted.  This paperwork has been a source of a lot of stress for me.  In the meantime, the principal told me to be in touch with the truant officer since they have an obligation to notify the city once a child isn’t in school for three days.  In this case, they chose not to notify until they had spoken with me.

So I’ll give the truant officer a call today so he has a heads up.  I’ve met with him twice before – once at the beginning of the year when we were planning to homeschool ds, and once when the girls’ school was pushing us to get counseling for dd12 and we refused.  (By the way, I learned last week that not long ago the administration became aware of what we were told by the school advisor during our meetings and was very disturbed.  So much that a teacher on staff who is a good friend of mine was told they feel very badly for putting us through what they did and feel they owe us an apology.  How all of this came into the open and what was said is an interesting story but I can’t go into details.)  At our last meeting he told us that we’re very well thought of in the community so hopefully he has a decent impression of us and we won’t encounter too much difficulty with our homeschooling application.

This was just the beginning but it was an important step, and it was good for my plans to finally stop just being in my head and start taking concrete form.  Upward and onward!

Avivah

Checking need for surgery and getting therapy services in J-m

I’ve had a couple of extra busy days – yesterday I spent most of the day at the hospital at Nahariyah with Yirmiyahu.  We were there for follow up testing that was supposed to be done while he was hospitalized.  But because one of the doctors doing one of the procedures had less time on her schedule than usual because she was taking off for Pesach, they gave our appointment to someone they deemed more urgent and didn’t tell us until we were sitting there waiting on the last day of his hospitalization.  It was disappointing because I thought one positive of being at the hospital was that at least we’d get all the immediate medical stuff out of the way.

Well, that’s how things go sometimes!  When they realized what had happened, they felt badly and they scheduled all three appointments on the same day so I wouldn’t have to come back three times.  I really appreciated that.  The testing was to determine how a bladder malformation was affecting his kidneys and to see how the problem could be remedied.  (This issue has nothing to do with T21.)  Thankfully his kidneys are still totally healthy, but test results have made it clear that he’ll need surgery to correct this.  They want to wait until he’s one to do the surgery, and he has to be on antibiotics until then to prevent an infection that could damage his kidneys.  We’ll go back to the hospital in another month for a detailed check of his kidneys and probably something else that I won’t know about until we get there.  :)

Today I went to Jerusalem (with Yirmiyahu) for our first Me and My Mommy group at Shalva in Har Nof.  They said that they’ve had an unprecedented demand recently that they don’t know what to attribute it to, but they have double the number of babies with T21 than they’ve ever had before at one time.  In order to accommodate everyone, they’re giving parents slots for twice a month instead of weekly.  (They also are cutting down the time that babies can be in the program from 2 years to 18 months.)  The babies who come weekly get hydrotherapy, which Yirmiyahu won’t be able to get because of the new scheduling and that’s kind of disappointing.  When I decided to travel so many hours for this, it was because I thought that he would get a full morning of services.  Instead, he gets less than two hours that includes massage, speech therapy and physical therapy.

On the other hand, life is so full now that it’s a relief to only have to go two times a month!  They said that they’ll definitely have a weekly slot for him in September.  And I still feel the social benefit of being with other parents of babies with T21 is valuable.  This year Yirmiyahu is the only one at our city’s child development center with T21 (it’s possible at the other health clinic’s center there might be someone else).  Last year there were two children.  So I don’t have a support network here and often I feel quite alone.

When I was at Shalva today, I met another mother from the north who was coming for the first time.  I was really surprised to see someone else from this part of the country because at my interview they were shocked that I was willing to come so far, as if they had never had it happen before.  I asked her what her motivation is in making the long trip, and she said that her one year old daughter only gets physical therapy once a week (like us) and there’s no other support (like us).  When I told her that was also our situation, she asked me if we were also getting intense pressure to put Yirmiyahu in a therapeutic daycare.  I laughed and told her we were.  It was so nice to meet another mother in such a similar situation!  It’s really different from the experience of mothers who live in the center of the country.

And it was also very nice to be in a room with about ten other babies with T21.  Except for my interview at Shalva five weeks ago when I saw three other babies, I’ve never seen babies with T21.  It’s nice to be in a place where my baby is just one of the crowd.  I do feel a little self-conscious that so many parents commented about him not looking look like he has T21.  He does, just his features aren’t as strong as what is typically seen. I’m not self-conscious about Yirmiyahu, but I don’t want to be the cause of any other mother comparing her baby in a less favorable light to mine.  One mother even asked me if he has Down syndrome!  Keep in mind that every single baby in the room has T21 because that’s what this group is for.  So I told her, of course he does!  She asked if I was sure, and I told her that we did genetic testing and he unquestionably has the common form of T21 (ie not mosaic Down syndrome). She still asked me if I was sure the tests were accurate – she told me he just doesn’t look like it.

As much as I appreciate this framework, I realized that I’m going to have to be careful not to compare his development to any of the other babies there.  It’s natural with so many babies close in age all in one room on a regular basis for mothers to take note of what each is doing, but I don’t want to.  Yirmiyahu is who he is, and just like I don’t compare him to anyone else in other frameworks, I don’t want to compare him to anyone in this setting.  I’m looking forward to getting to know the other mothers during our sessions.

Something else I really appreciated was speaking to the therapists.  The physical therapist has a very similar way of looking at development as me, and that’s nice because I’ve already said that I have differences of opinion in how I view things and what his regular physical therapist wants to do.  It’s nice to have a professional with 30 years of experience agreeing that what I feel is primary is very important.  I’m looking forward to implementing the suggestions that were made today.

So that’s the update on the last couple of days!

Avivah

 

Pain is inevitable, suffering is optional

Today I began reading a book that I’m really enjoying – ‘Get Off Your “But”: How to end self-sabotage and stand up for yourself’.  The author is Sean Stephenson, born with a rare bone disorder.  When he was born, most of his bones were broken because his bones were so brittle they couldn’t withstand the stresses of being born.  It’s hard for me to even comprehend that – his parents weren’t allowed to hold him because the force of that could break more bones.  Can you imagine?  This disorder led to many, many broken bones over the years – he said he and his parents stopped counting at 200 – things that we could do without thinking would break his bones.  It also affected his growth and ability to walk – his adult height is 3 feet and he is in a wheelchair, since his bones aren’t able to support him standing up and walking.

In this book he shares about a difficult situation he experienced at the age of 10, and when he was screaming in pain and asking his mother why he had to go through all of this suffering, her response was very striking.  So much so that I copied it down for myself and want to share it with you as well since it really resonated with me.  What she told him was, “Pain is inevitable.  Eventually, it touches us all.  Suffering, however, is optional.”

This encapsulated my thoughts on the subject of living through difficult times in such a pithy way!  It also clarified a point that I’ve been trying to keep clear for myself, that of acknowledging one’s pain to oneself, not denying it but also not getting lost in it.  It’s very easy to turn off and pretend that everything is fine.  I was talking to a friend about this topic and she said she had recently read a book about codependence, and it said that’s what codependents do.  It’s also very easy to talk a good game and say how everything is fine.

But in my opinion, it’s much harder to feel your pain and at the same time, make the choice that you’re not going to wallow in it or allow it to run your life.  Feeling your pain is, well, painful!  And we try to avoid experiencing unpleasant feelings.  But it’s really important to be able to touch the vulnerable and tender parts of ourselves.  This past week I’ve been consciously working on giving my kids space to feel their sadness, not rushing to reassure them when they express some distress.  Here’s the example that made me realize I needed to be more in touch with this.  Last week my ds14 was supposed to pick up ds5 from kindergarten, and forgot.  When he realized this, he felt really badly and said, “Oh my gosh, I forget everything!”

Now, this son has been an unbelievable help in the last month.  He’s taken over all the laundry, he and dd16 cleaned the house for Pesach together and kept everything running throughout me being gone at hospitals and then being sick; he’s changed his morning schedule so that he can take ds5 to school every day, and he helps out in many other ways.  I responded, “You’ve been an amazing help in this last month and I really appreciate all that you’ve been doing.  We all forget things sometimes, it’s okay.”  I actually thought that was a good response; I didn’t express annoyance or frustration that he forgot something important.  But when I shared this with an advisor, she pointed out to me that I wasn’t giving him a space to be sad.  This was extremely astute of her to pick up on.  What I should have said was, “I see you feel really badly about forgetting to pick up ds – that must be a horrible feeling.”  And let him say what he wanted to say before going on with what I said, rather than smoothing things over without acknowledging his sadness about not doing something that he should have.

When this situation was pointed out to me I realized that I do this pretty often, thinking that I’m being encouraging or supportive.  So that’s something I’ve been working on this week.  I don’t want my kids to have to pretend that everything is okay when it’s not, and I don’t want to cut off their opportunities to express their negative feelings even though I’ve been doing it with the best of intentions.

It might sound a little strange to say that it’s a positive feeling to feel the sadness of things not being the way you want, but it’s been a good growing experience.  As small as these little changes were that I made when listening to the kids, I realized tonight that it had a positive impact on me in deepening my ability to be in touch with my own feelings.   That was a pretty nice side benefit!

So back to the quote.  Yes, we all will go through tough things in life.  And it will be painful. But that doesn’t mean we have to be miserable about it.  I met someone at the supermarket before Pesach who was picking up a huge order of meat, and I asked her why she was buying so much. She told me she would be cooking for thirty people every day of Pesach.  I commented that it sounded hard, and she said to me, “It’s not easy but it’s sameach – happy.  And when you’re happy, then nothing is too much.”  I agreed with her, with the caveat that I shared above – that a person be honest with themselves and not just put on a superficial mask of happiness.

Today someone told me that I’m a strong person.  People often tell me that, but I’m not so sure.  Maybe, maybe not.  But what I did tell her is that I really believe that everything that happens is for the good, even when I don’t see it, and that helps me deal with a lot of what happens in my life.  So much of our suffering is in our mind, in the thoughts we think about what we go through.  I try to be aware of my thinking, since our thoughts determine our emotions, but recently I felt so snowballed that I got off keel and was thinking in a negative and besieged way.  I caught myself doing this so now I’m working on being conscious of my thoughts and actively replacing negative thinking with thoughts that are more productive.  This is where I think the idea that suffering is optional comes in.  We can’t control what happens to us, but we can choose our response.

Avivah

To put Yirmiyahu into a therapeutic daycare or not?

Today I took Yirmiyahu for his first physical therapy appointment in five or six weeks.  He lost a lot of muscle tone when he was so sick – he was like a newborn or even less, totally unable to support his head at all for a while.  I asked the doctors how long it would take for his muscle tone to improve, and they told me that they can’t predict when that would happen.  I reminded myself that we worked on muscle tone before and we can do it again but honestly I was discouraged at the thought of starting from scratch again.

I’m happy to say that after about a month, he’s mostly back to himself with even a couple of areas that he’s progressed in!  At today’s session the therapist wanted to assess where he’s at now.  During our session she reminded me about something she told me about a couple of months ago.  At that time, she described to me the special daycare (maon shikumi) for infants with disabilities, where they can get therapies of all types throughout the day.  It’s a full day program from around 7:30 or 8 am until 3 (I think), and it’s very close to our home.  Not only is it free, but we’ll be able to get transportation to and from the door of our home to the door of the daycare, also fully paid for.  Obviously, it’s a no brainer that any caring parent would rush to put their child in this framework.  Isn’t it?

A couple of days after Yirmiyahu was in the intensive care unit, the doctor who admitted him spoke to me and told me that his condition had been critical, and that there would have been no way to help him if we had gotten there even a few hours later.  A nurse from that unit told me that his blood work was so bad that they were all frightened when they heard his results called in from the emergency room to their unit in advance of his transfer.  To hear that his situation was so bad was very hard, really very emotional – it was then that I emotionally just turned off to handle the overload of what I was feeling.  So when ten minutes later a social worker came in and introduced herself, I knew she had come to see how I was handling everything.

To my surprise, she began by mentioning Yirmiyahu’s T21 diagnosis, and then started talking about this specialized daycare program available.  I just listened and nodded my head at appropriate intervals, but I guess my lack of response gave her the impression that I wasn’t going to put him in.  She kept telling me that I have to make decisions based on what is best for him, not my feelings, and how much better it would be for him than being at home.  She repeatedly told me to check it out before making any decisions.  I had such a sense of unreality to have her discussing this with me with Yirmiyahu lying there hooked up to oxygen, a feeding tube and monitors of all sorts.  It seemed really inappropriate that this was the topic that she felt was a priority to talk about right then.

Now that Yirmiyahu is nine months old, apparently it’s now a priority that he go into this daycare.  Today when the topic came up again and I was asked about my plans, I told the therapist that I don’t think this is the best option for him right now.  I don’t speak very openly with therapists and doctors because we have such different paradigms that it makes honest communication very challenging.  When I’m speaking English I can reframe paradigms for others, but I don’t have the nuanced Hebrew to be able to effectively do this.  And I don’t like to sound unintelligent about something that I’ve put so much thought into.  I keep things that could sound controversial or argumentative (that means most of my thoughts about anything that aren’t in lock step agreement with them) to myself.

She listened to my response, then wanted to know why?  I didn’t talk at all about the developmental benefits to a young child of being home with  loving and supportive parents.  Love and emotional security play a big part in a child’s development – even therapeutically, there are exercises that Yirmiyahu does because he loves the people doing them with him, and we do them when he’s rested and interested and stop before it’s too much.  This is really different than therapy – he’s a very good natured baby and usually only cries when he’s tired or hungry, but at every therapy session he spends at least half of the time crying.  He gets tired and wants to rest or be left alone but the clock says we need to be there longer so he has to keep having his body moved in different positions because it’s ‘good for him’.

Anyway, that’s what I didn’t  talk about, because I know how different this is from the way they see things.  The thinking here is the earlier you put your child in a framework outside of the home, the better – and for a child with ‘special’ needs, his therapeutic needs totally take precedence over anything else in his life.  It’s almost like they become their diagnosis first and foremost, rather than being a child with a diagnosis.  That’s a really big difference.  And when you’re not thinking of a child’s holistic needs, you think differently about what is best for him.

What I bascially told her was:  “At both of his evaluations, we were told that Yirmiyahu is excelling in every area of development.  So whatever we’ve done with him seems to be working well for him.  He gets plenty of stimulation at home; he’s not laying in a crib staring at the ceiling.  It doesn’t seem to me that at a daycare they can give him better results than we’ve gotten.”

I often have a strong feeling that there’s an expected script and I’m not reading my part.  My part is supposed to be to along with whatever I’m told is good for him.

I did agree to visit the daycare so that they can see that I’m a reasonable person.  I don’t want to do this because I don’t need to subject myself to more people telling me how what they can offer is so much more than me, people who assume that a parent doesn’t do anything on their own and that the experts are always better.  Doing things that other people want me to do that I don’t really see the value in is something that since moving here I’ve done much more often than I would have liked, but it seems to be part of working within the system.

Avivah