Ella continues to make tons of progress. Her cognitive impairment however becomes clearer as she get older.  Meaning, for example, that it is clear that math is going to be very difficult, if not impossible, for her.  Reading is going better and it seems like she will be able to read although fluency is still a ways away.  She loves books and that is her first choice of activity.  She tells herself the stories mostly and needs someone to point her to the reading but she can do it!  Physically she is walking all over the place and very independent in our house.  We have a large penthouse apartment all on one floor which is perfect for her. There are no stairs or level changes to deal with.  She is almost completely independent in the bathroom which after almost 10 years is a big deal.  Otherwise, there are a lot of medical appointments for me to deal with as she needs follow up for orthopedics, neurosurgery, craniofacial surgery, endocrinology (she has precocious puberty), dermatology, ear-nose-throat (a new discovered problem is a structural hearing deficiency) etc.  Sometimes I feel completely overwhelmed with all the appointments and all the things I need to remember to do.  This is still new territory for me in Israel – finding the right doctors, dealing with a different kind of bureaucracy.  In any case, the medical care is very good here, excellent in fact.  Everything is covered b/c Israel has universal health care.

Ella sings from the minute she gets up in the morning and throughout the day. Her physical therapist is American so they sing together throughout their sessions, folk songs mostly, Carole King, James Taylor, Joni Mitchel. Ella knows all the words.  She’s in her choir at school.  The report from the choir teacher is that her participation is improving all the time.  She certainly knows the songs.  She has a whole repertoire of her own and siting and singing or standing in the bathroom in front of the mirror has become one of her activities.

Today I went to the pool with Ella at our community pool (Galei Ron) after seeing her in action at her school Bet Izzi Shapira, where she had swimming lessons throughout the school year 2 times a week. She was totally amazing in the water. Floating on her back, turning over onto her stomach. On her back she can float all by herself and get out of the float position as well. On her stomach she needs something that she can push up on to take a breath of air. But she is so into it. Diving, making bubbles while completely submerged. She stands by the wall and independently splashes, dunks, dives and then moves away from the wall which scares me because the pool is rather deep. I mean she can only stand up within a meter from the wall without the water being over her head. But then she bounces off the bottom like most kids do to take in air. Completely amazing. I never thought I would see this day! and here she is swimming almost by herself!

Our greatest concern with the move to Israel was what we would find here for Ella, of course.  What services, schools, etc.  We were pretty sure we’d find less than what we had in the Boston area.  Etan came a couple months ahead of time for  a week-long reconnaissance trip, found a special needs school that seemed like it would work for us and looked pretty good.  So we made the move which was a ton of work that lasted about 3-4 months (two months preparation and two months getting things set up here).  We rented out our house in Newton Center.Unfortunately the end of the period culminated with me getting sick with mononucleosis.  I’m probably one of the oldest people in history to get it and it put quite a damper on things for awhile.

To make a long story short, Ella has totally blossomed here and we are really happy with what we have found.  While the regular school system leaves a lot to be desired, the Israeli special needs system is great.  I would need a couple of hours (which I don’t have) to write about all the progress Ella has made and all the super services we have found since we came here. I won’t bore you with the details but there are a few things I’ve learned that I thought I might share with the group:

• The “integrated” model doesn’t work for all special needs kids.  For many, a special needs school is probably a better option as I think it has been for Ella

• For a child that can handle it, socializing between children is very, very important and this requires some “categorizing” of children, in other words putting children together in programs with other children with similar needs and abilities.  Labeling is kind of a no-no in the States, but it has been helpful for Ella.  She goes to an after-school program that she loves with children with similar cognitive abilities (she’s categorized having “mild retardation”).

• Although have a single family home, with land around it may be the American dream (as it is the Israeli dream) our one-floor, smallish (by American standards) apartment has allowed Ella so much more independence and a chance to really make strides with gross motor skills and confidence building

• Don’t be afraid of change; you never know what you will find

Since things have worked out okay and well, frankly, really pretty well for Ella, we have decided to stay on at least for another year.  We still have plenty of issues going the foremost of which in my mind is the amount of physical help Ella still needs when she is at home (i.e., getting dressed, taking shower, playing, etc) which leaves so little time for me and Etan to socialize and have our own lives, hobbies and interests, outside of our work.  I still feel I need a support group and haven’t had time to join one!

The most amazing progress Ella has made, in short, is in the reading/language category.   She now speaks both Hebrew and English although it is kind of difficult to understand her.  We have a private teacher that comes 2 times a week to work with her on reading and she is doing great.  Next year she will be in a totally accessible school for children at her cognitive level and above.  We are looking forward to that.    Etan and I were so impressed by resources available at this public special needs school that we were in shock after the first visit and are so pleased that they have room for Ella for next year.

On the computer with the new cast and brace

So… We want Ella to be as independent as possible, her walking capabilities enhanced, we encourage her to walk around and get from place to place on her own.

Thing is… her ability to respond quickly when loosing balance is not totally there.

Last Friday Ella was standing next to a door and playing with it. Enjoying the drama of opening and closing it. She lost her balance and fell hard on her left leg.

It was clear something was wrong because she did not want to put any weight on it so we rushed to the hospital and had x-rays done.

They found nothing. But a week went by and Ella was not willing to use that leg. She then saw the orthopedist who surmised that it is a hairline fracture, not visible on the x-rays and Ella got a cast on her left ankle.

Due to the natural tendency of her left leg, since she hasn’t used it in a while her muscles contracted and it was painful for her to straighten the leg, so a brace was added to keep it straight for a while.

She isn’t very mobile at the moment and any walking is done with a lot of help. Stairs are out of the question.

We are hoping this doesn’t result in regression in her walking ability. She worked so hard to get where she is (was).

Ella is becoming much more verbal as time goes by. Her range of expression is expanding and her desire to speak and communicate in general is much increased.

However… her articulation and pronunciation is still very problematic. This is becoming more frustrating to me since she often now turns to me spontaneously and says something. I try to piece it together but often don’t understand what she is getting at. I employ all kinds of tricks like smiling, nodding and making approving sounds but that often won’t do. Especially when she is asking a direct question, and I am not sure what she is asking. Trying to narrow it down through questions is another tactic. But that often result in her going off on a tangent and me not knowing what the original question was.

So far, it doesn’t seem like she shares this frustration.

It is really nice to have her just comment on something out of the blue. Not as a response to a question as we are used to. For example a few days Netta had a melt down (not an infrequent occurrence), and went crying to the other room. Ella said ‘Netta is crying’ and then to Netta. ‘Netta. What happened?’

Or the other day, I was imitating something funny from the radio in the car. From behind me Ella suddenly announced ‘Etan. you is funny’. It is also encouraging to see that she is putting together more complex sentences.

Her vocabulary has grown dramatically. If you sit with her with a book and point to things in pictures she will be able to name nearly all of them.

As far as the pronunciation goes. It isn’t that she can’t do it, it is almost as if she doesn’t bother. For example her nanny is called ‘Mabel’. Ella consistently calls her ‘Nabel’, probably easier for her. But… if I work with her on this, by the third time she gets it right. We repeat and repeat and it seems like she has got it.

Then when we review the schedule (her absolute favorite activity now) she will say ‘and then… Nabel comes’.

Ella has become obsessed (nearly) with her schedule and with sequencing of things. Everything we do has a conversation about ‘and then…’. She wants to know what is going to happen after this. She has become quite good at it and if I tell her ‘today is Thursday, what happens today’, Ella will rattle off the whole days activity, morning to night and will even go to the next day. It is the first thing she is interested in every morning.

I find it quite encouraging.

Ella is becoming much more verbal as time goes by. Her range of expression is expanding and her desire to speak and communicate in general is much increased.

However… her articulation and pronunciation is still very problematic. This is becoming more frustrating to me since she often now turns to me spontaneously and says something. I try to piece it together but often don’t understand what she is getting at. I employ all kinds of tricks like smiling, nodding and making approving sounds but that often won’t do. Especially when she is asking a direct question, and I am not sure what she is asking. Trying to narrow it down through questions is another tactic. But that ofent result in her going off on a tangent and me not knowing what the original question was.

So far, it doesn’t seem like she shares this frustration.

It is really nice to have her just comment on something out of the blue. Not as a response to a question as we are used to. For example a few days Netta had a melt down (not an infrequent occurrence), and went crying to the other room. Ella said ‘Netta is crying’ and then to Netta. ‘Netta. What happened?’

Or the other day, I was imitating something funny from the radio in the car. From behind me Ella suddenly announced ‘Etan. you is funny’. It is also encouraging to see that she is putting together more complex sentences.

Her vocabulary has grown dramatically. If you sit with her with a book and point to things in pictures she will be able to name nearly all of them.

As far as the pronunciation goes. It isn’t that she can’t do it, it is almost as if she doesn’t bother. For example her nanny is called ‘Mabel’. Ella consistently calls her ‘Nabel’, probably easier for her. But… if I work with her on this, by the third time she gets it right. We repeat and repeat and it seems like she has got it.

Then when we review the schedule (her absolute favorite activity now) she will say ‘and then… Nabel comes’.

Ella has become obsessed (nearly) with her schedule and with sequencing of things. Everything we do has a conversation about ‘and then…’. She wants to know what is going to happen after this. She has become quite good at it and if I tell her ‘today is Thursday, what happens today’, Ella will rattle off the whole days activity, morning to night and will even go to the next day. It is the first thing she is interested in every morning.

I find it quite encouraging.

Lucy is Ella’s instructor at her horseback riding class at the wonderful ‘Friends For Tomorrow’:

Ella is doing really well with her riding.  Her balance and posture are great and she seems to use her weaker hand a little more these days.  The biggest change is her language- she talks and sings most of the lesson.  She loves to be silly and gets laughing really hard.  She enjoys asking Dayton to “walk on” in a loud sing-songy voice that cracks us all up :-). Lately she is also grabbing the reins and saying whoa to Dayton and then patting him for his compliance.

She is a joy to work with- she is also happy to help brush Dayton and also pick the dirt out of his feet.  She has made a strong bond with a volunteer too- Carol has been with FFT for a very long time (look for the article about her in our upcoming newsletter).  Ella really respond to her upbeat energy and sense of fun.  So we are really pleased with her progression.

Well… Ella’s cast is finally off. It was only on for less than three weeks, but with it being on her good arm, it really incapacitated her. We are noticing a slight regression in her skills as a result. I hope it will be very temporary and she will be back to where she was before the fracture very shortly. In the meantime we need to work with her to encourage her to try and do things as before. These include walking up the stairs with no help, taking off her shoes and socks, handling a drinking cup. We know she can do it, she just has to get back to it.
The process of removing the cast with her was quite amusing, as she was very involved and responsive. When the cast first came off she was totally ecstatic, staring at her hand, wiggling the fingers and yelling out in delight.
When the doctor came in to examine her she handled it all on herself (maybe for the first time). I said nothing
Doctor coming in.
Ella:’hi doctor waters’ (how she remembered his name is beyond me)
Doctor:’how are you Ella?’
Ella:’dud’ (good)
Doctor:How does your hand feel?
Ella:’dud’ (good)
Doctor:’can I take a look’
Ella:’yup’
Doctor:’does it hurt?’
Ella:’nope’
Ella:’all done’
Ella:’I want bye bye’
Doctor:’I think you can go. It is all fixed’
Ella:’bye bye’

It seems like forever since I wrote…and Ella has made so much progress. I especially saw it after returning home from being away for almost 4 weeks in Europe. Ella seemed to me much stronger in her walking and also much more able to carry on a “conversation” of sorts. One has to know what kind of sentences she can answer and also know how to prompt her. Most of the time, I really enjoy figuring these things out. For example, this morning, while trying to figure out how to fill the time until the morning babysitter arrived, I suggested that Ella and I walk around the house singing “Chitty, Chitty, bang, bang” songs. She is really into the music for that movie. She knows all the songs and can certainly get her idea across about what song should be sung when. So she was all for that idea of walking around the house and singing. Thinking about the “conversation” I am not sure who actually suggested it. Just goes to show, Ella really does communicate and is a master of her own fate.
Lately, Ella gets really exhausted in the evening. So much so that she can barely walk up the stairs without me pulling the left side of her body up, step by step. And the last couple of days she hasn’t been able to take off her own shoes and socks as she had been doing every night with me. I hope it is because she is getting so much exercise with her babysitters.
This week is free. School is over and her camp starts next week. Yesterday she was at the zoo with Stef. Day before that, she took the T (train) to the swan boats in the public garden. That includes tons of walking and tons of excitement for her. On the one hand that is great exercise for her. On the other, we get “zombie Ella” by the end of the day!
By the way, Ella is now 7 yrs. old.  We celebrated her birthday last Sunday. It turned out really nice for her.  About 12 of us were there.  All the Portman cousins, Angela, Greg and Karen.  Everyone sang “Happy Birthday” and Ella just about flew around the room from excitement.  This year, as Etan said, we were sure she understood the whole birthday ritual.

We are really lucky to be living in an area where the school system is so great. We would not be able to put together such a program for Ella otherwise even if price were no object.
The level of attention, dedication and seriousness never ceases to impress me.
Today we had Ella’s annual assessment/progress report/planning ahead. It is when the so called IPE for next year is put together determining what services Ella will get next year.
This year had an added importance since we also discussed whether to have Ella spend an additional year in first grade. We’ve been having discussions with the school, reading up on this and trying to think if this is the best option for Ella. The bottom line is that we think it is. With the progress she has been making with her communications as well as with her academics we think she will benefit greatly from having access to the mainstream first grade again, this time taking more advantage of it as she is able to connect better to what is happening in the classroom. And build a better base for her reading and writing that are so important.
We shall see.
It was an emotional meeting with (I felt) the staff backing this decision and optimistic about what Ella will be able to achieve.