Ella's Pages

Ella is getting more confident with her walking all the time. The challenge now is to get her to look where she is going. (amongst several other challenges…)

Ella’s confidence walking is getting better

In a recent trip to Colorado, Ella horses around with Gaul

Here is the note that came back with Ella from school today from Danielle:

‘Ella blew us away with her phonics work today, sounding out the words: mud, met, fit, rug, lip, mop. Ella was able to sound out so clearly and confidently.
She has also been doing so well during reading time looking at the books and making connections.
Ella has been awesome with her speech / vocab answering friends and teacher in full complete sentences.
Wow! She is amazing me!
Danielle’

Some days are encouraging.

So much has transpired since the last serious entry. It is tough to know where to begin.
Lets just start with this weekend. There were three firsts this weekend and they were very exciting.

First. on Friday Ella started saying ‘Cool’. now this may sound non impressive or trivial to the uninitiated but to us Ella fans, this is a big deal. Till now all the guttural sounds (K,C,G) were out of Ella’s scope, non existent. They were replaced usually by a ‘t’ sound. This made understanding her a very exacting science reserved only to the inner circle. She would be going to the ‘part’ or telling us that a ‘taow’ makes the sound ‘moo’. Anyway. last week she had an appointment with the optometrist who, wanting to strengthen her weak eye recommended an eye patch. A ‘cool’ eye patch. Ella started saying ‘cool’ and was very proud of this constantly repeating it and some other words with a ‘k’ or ‘c’.

Second. On a walk we were taking while camping, we hiked up to a fire tower at the top of a hill. everyone was tired out from the walk and we just lay on the grass below the tower.
Out of the blue Ella pointed at the tower and said ‘Tower’. Now… This is the first time Ella volunteered a word that we didn’t have to drill out of her (Ella. what is that? who is this? what color? etc.). Also, this is a word we didn’t know she knew. maybe she picked it up from a a book or story or school. Encouraging.

Third. While taking a different walk, Ella suddenly asked to ‘I want Run’. we thought we hadn’t understood so we tried all kinds of permutations (want gum? gun? rug?) no. She really wanted to run. holding her hands we ran with here and she was clearly thrilled. We told her she can say ‘stop’ to stop and for the next half hour we started and stopped running with her.

This independence is a great sign. Ella has been mostly responsive in her communications. It is nice to see her come up with her own ideas and express them.
Looking forward to more of this.

She thoroughly enjoyed camping and didn’t mind sleeping in the tent in a sleeping bag on a hard floor. And it was cold. She was babbling a lot and singing. The fact that there were 4 more kids around really made it fun for her.

So… It has really been a long time since we updated Ella’s pages. This hasn’t happened for lack of things to write about concerning Ella and not because Ella has not been making progress and changing dramatically as time goes by. The reason? not clear. Part laziness, part lots of other things going on. Also for us describing Ella’s progress is somewhat artificial because it is often difficult for us to observe the changes having her as part of our lives. It is a conscious effort to try and reconstruct the changes
So, I’m not going to be writing all that much this time. Just announcing that we are back and will be continuing to tell you about Ella’s adventures.
The big milestones that we past and those that are coming up are: In June Ella turned six. It is quite amazing that she is six already but… go figure.
Next month Ella is going to start first grade. This is truly incredible. First grade!
More in a bit…

Ella can spend quite a while telling and retelling a story

Ella just arriving at the Beaches resort in Jamaica

Caring for Ella has a built in dichotomy, quite separate from the missing brain hemisphere.
Within Ella’s sphere we have nothing but excitement over her achievements, her joy and the progress she makes in almost all aspects of her life. Measuring this against herself it is always surprising to see what she is doing now. Friends who haven’t seen her in a while always comment how far she has come.
The world however is not Ella’s sphere. Even though ‘everyone is different’ there are certain absolutes. Measuring Ella there gives very different results. As a parent it is always difficult to face that, no matter how excited you are for what Ella is achieving in her own scale. The world however doesn’t care about such things. Kids point at Ella and are taken aback. She cannot do what others can and requires special attention and a different way of doing things for nearly everything.
We are always on her side, in her sphere, accommodating, making it possible, being the ‘interpreters’ of the real world to Ella and of Ella to the real world. You just worry if there will always be someone like that around to perform those functions.
Most of my nights end with a dream with some scenario or another where the answer is … No.

We have been really delinquent about writing since Ella began kindergarten. Here it is past mid-year and now everyone is thinking about next year (especially Netta, who will enter kindergarten). Ella’s progress has been immense. As usual, it has been in small increments and she is still very dependent on us so we tend not to appreciate it all the time, but she really has made so much progress. She is talking much more. She babbles a lot which is incomprehensible but has all the right intonation. She uses language much more to make her needs known. She says: ‘I want…potty/cat/auto/all done/music/Netta/Aba/Ema/hug…’ and much more.
Most of her sentences start with ‘I want’. She says, ‘I want EAT’ a lot lately at the most unexpected times. We are trying to figure that out b/c sometimes she couldn’t possibly be hungry. It is almost as if she wants to say something and that is what she can think of. She almost always goes into a chorus of ‘I want eat’ just as she we are putting her coat on to get her ready to leave for school. Go figure…We don’t know what that is about.
Ella and Netta both have stopped napping during the day (from months ago) and around October/November we stopped using diapers during the night. Ella has had very few accidents which is amazing since she can’t get up by herself during the night if she needs to go. At school, we hear mostly the reports of her teachers, therapists (at team meetings once every 6 weeks or so) and from Amy her aid, who writes just about every day. Amy writes about Ella’s amazing accomplishments. For example, her singing solos in music class, doing pushups and writing and reading some. We get the impression that Ella does a lot more at school than at home. Well, she is probably very motivated by the other kids. Ella continues with horseback, swimming therapy and movement&music on a regular basis during the week.
She also goes to Etgar l’Noar which is a special needs Sunday school. They also report Ella taking part in many aspects of the class, especially singing where I think she really gets excited and shows off. She loves singing the songs she learns with us at home (provided we know what they are…) and gets the melody and some of the words out very clearly.
Ella also goes with me to a special needs music class on Saturdays (sometimes we take Netta along too). She gets so excited when the teacher starts that she shakes uncontrollably and screams a happy scream. This usually gets everyone into a good mood. Ella’s motor skills have improved quite a bit too. She walks very well now holding onto one hand. She can walk for a long time and stand as well. The other day I took her to the mall and she walked around almost the whole time with me without complaining. When she gets tired she’ll say: ‘I want auto’ or ‘I want all done’. We took her for a stroll in the Arboretum the other day and she lasted for about a half hour. This is pretty good considering that a year ago she would have complained after about 5 minutes.
She still is very reluctant to walk completely by herself but she can do it. She is more willing to walk alone when in places she knows well like the JCC or at school. Two weeks ago we were in Jamaica. Ella went to the kids camp with a babysitter. She liked it and had a great time swimming. Still she was happy to get back to Aba & Ema at the end of the day…