This afternoon, Ella, Maddie, and their friend Brooke collected some nature items to make a fairy house. Maddie suggested the idea, Brooke suggested the box, and Ella suggested the leaves and buttercups.
Some conversation about the contents of the fairy house:
we can use leaves for beds
we should use flowers for pillows
we put buttercup flowers as blankets
we made a bathtub with a container and filled it with clovers and flowers
we got pennies so they could wish on them and throw them in the bathtub
we could have made a stick roof but we didn't have time
Here is what Ella, age 10, hopes will happen:
"I hope that fairies will come and sleep in the beds, and in the morning they will still be sleeping so I can get a picture of real fairies! I think they will be happy that someone cares for them and made them beds, also I think it would be embarassing if I saw a fairy naked. A fairy in the bathtub! She would go "aaaaah!" in her little tiny squeaky voice. It would be cool if one of the fairies had a baby fairy. Then I would be able to see a baby fairy!!! "
I have another blog, specifically to record our daily adventures in homeschooling located at Mimzywood Academy . I have recorded our first week and a half of homeschooling, and have already come to a point where I need to step back and get some comments and feedback from others.
I am currently homeschooling my 6 yr old and my 3 yr old. I've never homeschooled a 3 yr old before. In May, Annelise busted out with a newly discovered skill: reading! I read to her a lot, and continued doing so, but added in doing some Kindergarten level summer bridge type workbooks with basic skills over the summer when I felt like working with her or she mentioned wanting to do school.
About 2 weeks ago, I started doing formal lessons with both of them. Maddie is beginning to read, but is not motivated at all. She is not nearly as difficult to work with as Ella was, but because she has ADHD, teaching her is its own brand of challenging. She is probably doing what one would expect to be average for a 6 yr old beginning first grade. She would rather design fashions, do tie dying, drawing, painting, sketching, dancing.. than anything else in the world. I love this about Maddie. She is fabulous. She is very very creatively gifted. It's not so good for trying to do schoolwork though.
Annelise LOVES doing school every day. She has made great strides, I think, just in the two weeks we've been doing school. I quickly discovered that she is able to do 1st grade reading/spelling, so I got the book Explode the Code 1 to work with her. There are 3 books in the series prior to Explode the Code 1, and I did a few pages with her in each of them, and she blew right through them. When I did the first 3 pages of Explode the Code 1 with her, she was well able to do what it asked, but it seemed like a little bit of a challenge.
I decided to get a different first grade level program for her, concentrating on letters and small words and reading and handwriting and phonics... rather than moving her up into doing My Father's World first grade with Maddie. Maddie hasn't said anything about how she feels concerning Annelise's reading ability. I can't say that it has motivated her to work harder, but it also doesn't seem to make her angry or jealous or anything. Yet. I wanted to avoid any comparing of the two of them regarding ability to do the same material with the 3 year age difference.
All of this to say...
How do I encourage Annelise in her reading and exploring of the world of words, and similarly encourage Maddie, who is at about the same reading level as her 3 year old sister? Is there anything I can say to Maddie when she does inevitably comment that Annelise can read words that she can't? I know ways that Maddie is talented, but will gushing about her ballet dancing and her painting ability make any difference to her when her 3 yr old sister can read a whole book and she is still struggling to sound out words?
I am a social media girl and a social butterfly in real life. I talk to a LOT of people every day via twitter, facebook, the phone, etc. When people ask what's new, what are we doing, how are the girls, how is homeschool going...should I avoid talking about Annelise's accomplishments in reading? I don't want to come off as a braggart.. I'm not doing anything~ it's all her. When I go on about Maddie's dancing getting complimented by a pre-professional ballerina from our local Ballet Conservatory, or about the tie dye business she wants to start, about her awesome watercolor painting, I feel like people can sorta blow that off, it's just a child being artistic. And Ella and Annelise don't seem to get ruffled. They hear me talk about their accomplishments too. But academics is a different thing than art, and giftedness in academics seems to take on much more of a competitive edge.
Where is it safe for me to talk about Annelise's new words, etc and to get advice about how to cope with siblings who may get jealous feel overlooked, etc? I have found a support network for moms who have girls with Aspergers.. Ive gotten wonderful feedback and advice from them. I hope I can find a community of people who are encouraging and helpful as I navigate this new territory. I am blessed to know one mom personally in real life who has two very gifted children, especially in the area of reading early. Also, I know Doublelattemama from twitter, who blogged about this subject today: Musing from the Mom of an Early Reader .
I want to love my kids well, I want to build them up and not compare them or tear them down. They are indeed all gifted in different ways, and while I've been vocal about Ella's writing and sketching and Maddie's dancing, painting, business sense and sense of style... Ella has not been jealous of Maddie being talented in different ways than her. Now Annelise has something she is good at, and I am hoping I can continue to encourage them to see that they are all gifted in their own way without really screwing things up.
Regardless of Ella's professional diagnosis of Aspergers, the school does not recognize her need for services because when they have observed and tested her six ways to Sunday, she does not in any way seem to have need of services. She is flourishing at her school, with no services.
She acts out at home. There is not much doubt that she is on the spectrum if you'd observe her for a day or two at home or out in public. But she keeps all that to herself at school. I can't ask them to make our life at home easier by giving her services that they can't see that she needs. As a matter of fact, the school psychologist told me over and over during her IEP that Ella couldn't possibly have Aspergers because she was social, she used toys appropriately, she didn't have an obsession that overtook normal conversation and focus, and she didn't correct the teacher! Besides, she didnt test on the spectrum when they did an autism spectrum test at school. :-P
I am currently researching what it takes to get a 504 plan in place, to give her just a few modifications that would decrease her anxiety level.
If you have other suggestions, I am open to hearing them... but I did sign the IEP because it seemed very clear to all of us that despite her professional diagnoses of Aspergers, Sensory Processing Disorder, Sensory Modulation Dysfunction, Dyspraxia, and Auditory Processing Disorder that she did not need special ed services that an IEP would cover. Having signed it, my goal is to move forward with preparing a 504 plan and talk more with her teacher.
Background:
When Ella (soon to be 6) was about 14 months old, she had 4 seizures within a week. Her ped told us to discontinue her pertussis series as it could have been a reaction. Also, neurologists at Vanderbilt put her on phenobarbitol for a year. She had no seizures while on the med, and none for 2 yrs after coming off it. Last year she had 4 seizures, one in March, one in April, one in July, and one in August. She had a 24 hr video EEG and an MRI in May, and a 48 hr ambulatory EEG and another MRI in November. The MRI in May revealed that she had the myelin level of youir average 2 yr old, the lack mostly evident in her temporal lobes. The followup in November showed no change. Ella is an average/above average almost 6 yr old, I homeschool her and she is ahead of her same age peers by a year in schooling. She has no motor issues, nothing that is a symptom of this lack of myelination.
Myelin is the fatty substance that surrounds your neural nerves, and helps impulses pass from nerve to nerve smoothly. As a baby and a young child, where you do not yet have myelin, you have water. It is an inferior conductor. It was supposed that perhaps Ella was just slow at producing myelin, and that was the road that her neurologist encouraged us to take. Just wait and see, no dietary or supplement changes. But you are done with myelin production by about age 8, and Ella will be 6 next month. She has the myelin level for your average 2 1/2 yr old.
I called The Myelin Project and spoke with people at that foundation (They were responsible for the movie Lorenzo's Oil, about a boy who was losing myelin). They put me in touch with Dr. Moser at Johns Hopkins, as well as a doctor in Chapel Hill, not far from where we live. I sent them her file, but got the runaround from WakeMed about releasing her MRI results, so they never got sent. I got pregnant, and got distracted.
Johns Hopkins' Kennedy Krieger Institute invited us to come up for a consultation, but without the MRI films getting sent, no one ever followed up. Its a big place, I can imagine they dont keep track of everyone.
Well, Ella had another MRI on Monday, and it showed no change.
So Johns Hopkins and Dr. Escolar will be getting her MRIs within the week, and I will be in search of some answers.
The information online is mostly in medical-speak, there is some out there, but it is difficult for the average person to understand. We don't know the answers to many questions, like:
1. How is myelination measured?
2. What is the normal measurement for her current age? What would be abnormal/low? We are just trying to find out if she is still in the low normal range or if she has fallen off the normal range.
3. Is the "lack of change on her MRI" probably a lack of change relative to where she should be, or would it be an absolute lack of change?
4. Why is Ella a slow myelinator? What reasons are there for such a thing?
5. Would anyone be able to tell that she is a slow myelinator rather than that she has ceased myelin production?
6. If she is a slow myelinator, are the seizures an issue that is (or can be) indicative of this lack?
7. How long in terms of years can she have normal neurological function with an amount of myelin appropriate for a 2 1/2 yr old?
8. Is our neurologist correct in his wait and see approach, or should we be seeking any answers about dietary changes or vitamin supplements?
So hopefully I will hear back from Dr Escolar and from my contact at Johns Hopkins today, and we can get going on this.
Not really what I needed to hear or deal with at 6 weeks post partum, but you just roll with the punches around here, you know?
Prayer and vibes and thoughts appreciated. If you are the praying sort, here is a specific request:
Please be praying for us as we digest what this means, to not be depressed or lose hope, and to trust in God to surround us with his peace and wisdom about what to do next. And for the radiologists, neuros, and specialists to receive the information and review it with discernment and to help guide us in our understanding of hypomyelination.
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