Ella's Pages

Ella continues to do well in kindergarten and at this very moment is being awarded a “principal’s star” in a ceremony in front of the whole school. I’m not sure what she is getting it for but apparently for some outstanding accomplishment. Most of Ella’s accomplishment may be in the sphere of socializing because according to reports and what we can tell at home she has lost interest in working on reading and the re-enforcing the letter sounds. It may be that she is bored with it and hasn’t aquired the maturity, curiousity or discipline to keep it up. When we try to work with her at home on writing skills and the letters she turns her head away in protest. This is usually at the end of the day when she might be tired already. But also Amy has reported a lack of interest on her part at school.
Ella’s strength now is in story-telling. The problem is that no one can really understand the story she tells which usually involves someone saying “noooo” a number of times. Ella was a devil again for Halloween (Netta was a pig for the 3rd time and proud of it!).
The exciting thing was that for the first time Ella was able to walk around to the houses. She didn’t complain and kept right up. There is no doubt in my mind that she wouldn’t have been so enthusiastic if it wasn’t for Netta enthusiasm in running up to everyone’s door and asking for candy. While Netta immediately exclaimed “Trick or treat!”, Ella wanted to step right into everyone’s house — probably looking for the closest chair. She got a little confused about where to put the candy and how many to take but the upside is that she walked about 3 blocks.
Such an improvement over last year! when she couldn’t go at all. Next day she had a great story to tell about in school in which Aba said: “Noooooo!”. (probably b/c he was tired and didn’t want to do much trick or treatin’.)

I’m happy to report that Ella is doing well in kindergarten. The greatest thing is that everyone just seem to treat her as ‘one of the crowd’.

We had her parent-teacher conference a couple of weeks ago and her teacher, Mr. Byers, told us that she transitioned very nicely into the class. She didn’t have any separation issues or extreme shyness. Of course, she has her all-time favorite aid from the past two years by her side. She feels so comfortable with Amy that she often asks to go to the bathroom soon after she gets to school and then poops. That is the ultimate comfort gauge. She hasn’t done a poop with me in weeks! Amy writes us every day a whole page of information about what went on. Granted, I think there is some ‘rosy-ing’ up of the events, but according to what Amy tells us, she is making friends, ‘writing’ stories by choosing letters, singing in choir, playing games in P.E., and more.

I was told there was one first grader who got kind of freaked out by Ella’s appearance. I don’t know who the little girl is but apparently she got over it eventually with some help from staff. I went to talk to the class and read my book about facial differences to them, but they honestly didn’t seem that interested. So, all told things are going very well for Ella in Kindergarten and I am definitely happy she moved on. She was really ready for it.

Ella has made so much progress this summer! She’s saying so many words now. Sometimes they surprise us and we don’t understand them right away. Like yesterday, she hit her head on the table and then looked at me squarely and said “huuuuu”. I thought she was saying “home..” which she says as we approach the house in the car or she wants to leave from somewhere. But Etan figured it out. She asked for a “hug”. That is the cutest. She had her endocrinology appointment last Tuesday. As I figured, they don’t know what the issue is but did seem concerned that her growth, both weight and height, have bottomed out. She’s just about fallen off the growth curve and has put on weight or grown in height since about a year ago. She had blood tests and urine tested.
We should be hearing back from the doctor (Dr. Krauel) within a few days. But the head doctor, Dr. Spack, seemed pretty convinced that is not hormonal or thyroidal b/c if it were that kind of problem, she would continue gaining weight while not gaining in height. He suspects a nutritional problem and recommended seeing a nutritionist.
Maybe she is just not taking in enough calories for the amount of energy she puts out. I don’t know about that theory. To us, she seems to eat quite a bit — much more than Netta. Oh well, it is possible that they won’t find the answer, at least not in the near future. In the meantime, we’ll try to keep her calories up.
Otherwise, Beth is leaving us next week which is a huge change. She took Ella to the movie theater yesterday and Ella was very content (for about 45 min.) to watch a movie and eat popcorn. Then she started saying “home”, “home”.

Ella’s motor skill development seems to be at a stand still. She has new words pretty steadily but her gross motor skills seem to taking forever to develop to the point where she can really walk by herself. Maybe I say that because my body often aches from having to bend over her and get her to move this way and that.
I have to bend over her when she walks and despite the fact that she looks great in the video-clip on the homepage where she is walking at the gym, she really can’t initiate or end such a series of steps by herself b/c she can get up or down from a standing position. She doesn’t want to walk by herself either. A couple of weeks ago at the doctors when we went in for her regular yearly checkup and shots for kindergarten, the doctor (and me) was really surprised that she hadn’t grown at all since she was measured last year. And, she had gone down a point & a half in weight. At first he thought it must be a mis-measurement but I was watching as the nurse weighed and measured her. I couldn’t believe it because we thought she had grown. Clothes seem small on her from time to time. But, the facts remain. The really suspicious thing, that I’ve been wondering about for some time, is that her feet haven’t grown at all in years. I can’t remember when I got her a new pair of shoes. It has been at least 3 years, I’m sure. The Dr. Shulkin, who saw her that day, ordered a bone x-ray to determine something like “bone age”. We did that. Results came back normal. I talked to Dr. Marcus about it who at first didn’t seem concerned but then looked at her growth chart and recommended her seeing an endocrinologist. We’ve made the appointment – which wasn’t easy b/c normally you have to wait about 4-5 months to get one at Children’s Hospital. Dr. Marcus helped and we have one for mid August. I’m hoping that will shed some light on the motor skill development (or rather, lack thereof). Dr. Marcus said, as I suspected, that feet are one of the first parts of the body to grow quickly.
Also, Dvorah (support group Mom whose daughter has growth issues) told me that when her daughter starting getting hormone shots, the first difference she noticed was in muscle tone. Really, no matter how much walking/standing we force Ella to do, there is no growth result. Her endurance has gotten better, that is true, but I’m not sure she has the strength to walk independently which is probably the reason she doesn’t want to try. Otherwise, Beth is leaving at the end of the summer.

We are back in nanny-search mode and it is hard. Beth has been so wonderful. It is going to be a big transition.

We made the decision and Ella is moving on to Kindergarten in September. Tomorrow she will go to orientation at the school for a couple of hours. Although we still haven’t heard back from the state on the waiver, we decided it is best for Ella to move on. When I told her teacher, Kim, she seemed to agree with me that this was the best course of action.

Some of my reasons: to take advantage of the opportunity for her to be with typical peers; as the only child around with significant needs she may get more attention (albeit not focused on her disability); she knows the routine in Kim’s class very well and as Kim says herself, she doesn’t think she can give her much more than she’s already obtained from the curriculum. The change in schedule will be pretty significant which means a lot of re-juggling of therapies and such.

I also have arranged for her to go to after-school care, 2 days a week. She’ll still need an aide and we’ll have to find one… Yes, Bethh is leaving at the end of the summer, unfortunately! So there are lots of transitions coming for Ella. As for the orientation tomorrow, I’m not sure Ella understands what’s coming…it is hard to know if she understand she’ll be starting a new school. I’m apprehensive about the reaction she might cause with some kids. Sometimes they are afraid of her looks. They will probably be on edge to begin with and Ella will be too. I don’t think she minds about stares. If someone breaks down crying…woe is them. Ella will probably laugh her head off at that. In general she is doing well and making steady progress especially in her speech.

In contrast to Etan (last entry), I find that Ella is more frequently willing and able to assert her likes and dislikes which she very clearly has. She has perfected her ‘no’ and was practicing last night when I tried to get her to eat some of the broccoli quiche that Netta loved. She was okay with the crust but when I tried to get her to eat the filling she turned every-which-way, pushed me away and said a very strong ‘NO’, ‘NO’, ‘NO’. Also, she certainly doesn’t like to walk in unfamiliar directions (like in most of the time in Spain) and can drive one nuts if the stroller is in sight by having what can only be described as a meltdown. As I often say, she’s learned this technique well from a master (Netta).

Ella’s speech is taking off. She surprises us every day with her ability to say words. Thing is, she often doesn’t repeat them in the subsequent future. The day before yesterday she was saying a perfect ‘button’ and she does very well with a computer game that Bethh has developed for her where she must name the picture before she can move on to the next. She knows so many words but it is clear than they don’t necessarily make it to her lips when she wants them (They may be stuck on the edge of her tongue). Anyhow, now we face the significant milestone of Ella going to kindergarten. She is eligible to start next year but we asked the school to ask the state for a waiver to keep her back a year.

A few months ago I was totally convinced that this was the right thing to do, now I am not so sure because I kind of like the idea of her moving on. But, we haven’t received an answer yet and Etan feels that she should stay back. Obviously, she isn’t up to her peers in development…the thinking is that if she stays back she’ll be just that much more caught up by next year. But, I guess I believe in change and I trust the school system will do a good job either way. She has made so much progress these last two-three months that I think she’d benefit from being in as typical as possible an environment.

Ella handles travel surprisingly well; she adapts easily to the new environments, has no problem sleeping in strange places and loves the airplane. Her travel activity on planes can be very disconcerting to anyone else and it certainly is to us it consists mainly of flipping the in-flight magazine back and forth for hours.
She seems content with it for us it is a reminder of her problems. She seems excited by new places and activities and hardly ever gives us a hard time, maintaining her cheerful disposition. That is still a wonder to me. Ella nearly always wakes up smiling, jabbering cheerfully, very, very differently than everyone else in the house. Things are basically alright for her, if she is complaining there is generally something wrong. Not a whim or a bad mood, Her brace is hurting or she is hungry, when the situation is corrected she is fine again. Lets go.
She has been willing to try more different foods and that also makes it easier to travel with her. Going to restaurants is usually not an issue. She will also walk considerable distances as long as she does not see the stroller. If she does that is it. So we usually have to make a decision ahead of time. Stroller or not.

In our last trip to Spain we discovered gawkers are a universal race, not limited to national borders, age or dietary preferences. Everyone gawks when Ella goes by, you would think this would make us proud as parents. Surprisingly it doesn’t. There are different types of looks, the ‘oh my god did you see her’ type, the ‘I’m going to pretend I am not looking but sneak a peak’ look and the ‘check that out’. Of course there is the outright ‘I will just stand here and look at you’ style mostly adopted by the younger generation.
Ella doesn’t seem to notice or mind, a fact that both comforts and disturbs me.

Ella’s relationship with Netta has become more involved. There is a symbiotic control issue going on with Ella grabbing Netta and Netta playing along by staying close by and allowing it to happen even though she could easily avoid it by either moving away or by swatting Ella which she could easily do. Occasionally they role play by pretending they are both dogs and barking for a while. Then Netta will decide she is the Mommy doggie and take care of Ella. Quite cute. The speed at which Netta learns is an illustration to the contrast with Ella’s abilities. Ella was actually first in knowing most of the alphabet with Netta not really getting it. Then in one week it just snapped into place and Netta could rattle out the whole alphabet and name words for each letter. We are working with Ella still on the pronunciations of the letters, there are some she just cannot do (yet) ‘K’ or ‘G’ are really tough for her which is a pity because she cannot say Gaul’s name. There is such a huge satisfaction when Ella finally overcomes a hurdle. When she says a word or when she takes her first step unaided. There is such enormous pride in her expression too every time that happens. It’s a bit unfair, I guess. Netta achieves such amazing strides almost every day, building complex sentences in two languages or climbing up a jungle gym, or grasping a complex concept. We smile and tell her she is doing a good job. Then when Ella manages to stand 10 seconds alone we nearly explode with pride and encouragement. Maybe that is an advantage of having a special needs child grow with you. The near ecstasy of realizing achievement when it finally arrives (though it takes its sweet time getting here….) with normal (OK, typical as it is politically correct to say) kids there are so many achievements flying by, you nearly don’t notice them and wonder when this or that ability suddenly popped up.

Ella is a picture of contradiction. She is confusing in inconsistencies. Ella knows the alphabet, she recognizes every letter and will point to it when asked, yet she can pronounce only a few. She has been making a lot of progress in her walking, she can tolerate much more of it yet she cannot handle stopping to walk, or know what to do to get up or sit down. She knows perfectly well what is going on, has very specific preferences about what to do next, what food to eat and what activity she likes, yet her playing is very, very basic, something a 9 month old would do, flipping a toy over and over. She enjoys movies and is very specific about the parts that are funny, amusing or boring yet will not specifically tell you that she needs to go to the bathroom and uses only a few basic words for anything she wants (with a lot of ‘all done’ thrown into the mix). In the right mood she will go on and on as if giving a speech, mimicking the melody of speech, hesitating with ‘ums’ and ‘ahs’ and accentuating the important parts (it is quite amusing actually), with only meaning missing, yet is very basic in her communications with others, often scratching or grabbing. She is aware of her environment and reacts to the presence of people around, yet is at times so painfully helpless and often seems zoned out. One of the most difficult things as a parent is seeing is seeing your handicapped child through the eyes of strangers. We are in tune with Ella’s gestures with her nuanced expressions and articulations (and read a lot into every form of communication) yet when seeing her through someone else’s eyes, it is clear how different she is, how handicapped, how limited. How little she can communicate with the outside world. I often have this nightmare of loosing her and her being found by strangers who would not be able to understand her and not know who she is and how to find us. The other most difficult thing as a parent of a handicapped child (ok there might be other points) is realizing her helplessness. A while ago I was reading Ella and Netta a nighttime story and had to go get something from the other room, when I returned I found Ella had leaned to her left (her weak side) and was unable to right herself, she was just stuck there, her head leaning on a table not able to change her position. A parent’s nightmare. I almost cried. I won’t always be there to protect her. What will happen next time? They always say that kids have strengths, they can handle themselves. This isn’t the case. It is very scary.