Rosh Hashana

Here is my 5-y-o waiting for Rosh Hashana to start. The Jewish New Year starts tonight at sundown. We will have a festive meal, and dip apples in honey for a sweet new year.

I sent out my greeting cards yesterday. Rosh Hashana cards to the Jewish friends and relatives, and "thinking of you" cards to everybody else. I enclosed 4 by 6 copies of the children's portrait from this summer (see bottom of blog). So I *do* send yearly greeting cards, but not in December.

Hanging Out

Here is a pic of my middle son, R***. He is proudly wearing his new pair of pajamas. The material was purchased by my daughter and I about 8 years ago. We had intended to sew matching sets of PJs for ourselves, but never got around to it. My housekeeper sometimes likes to do quiet things while she is here, as she can't be running and scrubbing 8 hours per day. So she did the sewing. Cute! The funny thing is, now we are so health conscious, the Coca Cola theme of the fabric raised my son's eyebrows at first. I figure I must be doing something right if he has that attitude towards soda.

Sunshine

"Sunshine is the greatest disinfectant." I love that saying by Supreme Court Justice Louis D. Brandeis. True in so many ways.

If there is evil in the world, let the sun shine on it. Publicize.

But what got me thinking this morning was the more literal translation. How do we keep our kids from getting sick every 2 seconds. As the cold and flu season approaches, there is one easy thing we can do.

One thing I always do is take a shopping cart from a sunny area. Usually one sitting warm out in the parking lot. This way I know that the warm surfaces are more clean of viruses/germs.

Another thing I do is to take my kids to outdoor parks instead of indoor play-places. Just the simple sun shining on the toys/slides makes the entire experience much cleaner.

And those are my sun-shiny thoughts this morning. ;-)

Summary of special adventures

Or should that read adventures in special education?

The first step is the "aha" moment when you realize that there may be something going on with your kid. I knew my son struggled in school since first grade, especially in math. We went on struggling, year after year, and I kept hoping it was immaturity, disorganization, and that it was something he would grow out of. My friend in the neighborhood loaned me a book called "The Elephant in the Playroom: Ordinary Parents Write Intimately and Honestly About the Extraordinary Highs and Heartbreaking Lows of Raising Kids with Special Needs" by Denise Brodey. This book sat on my counter top for months and months. I finally started reading it out of guilt when I found it while cleaning. A few stories in and I was hooked. I love reading about people's lives. And these heartwarming stories of family and love were amazing. Then midway through the book my heart skipped a beat. There was a story describing my son. I mean completely. The only thing different was that the boy in the story was SO stressed out by school he went through an episode of hysterical blindness before he was diagnosed with Nonverbal Learning Disorder. This gave me a lot to think about and I started researching it.

The school said they would look into it with my son's testing. It wasn't until the first IEP meeting on May 1, 2008 that they told me they completely ruled it out, and that my son had ADD, and that he didn't qualify for any special services. He was given some accommodations on a 504 plan. I was SO angry and devastated after this meeting. The school had ignored a lot of their own testing data. All the data that pointed to his learning disorder was explained away "oh, he must not have been paying attention during that part of the test".

My neighbor told me about a local group of advocates and trainers called Team of Advocates for Special Kids, TASK. I went to an 8-hour IEP seminar in late May. Around that time, I requested an IEE, an Independent Educational Evaluation, based on the fact that the school ignored testing data, and I didn't trust their conclusions. I spoke to the woman at the district and she approved the IEE. Without her approval, I would have had to go to a hearing to argue for it.

The day school let out, I sent a letter complaining about bullying in school, to make sure it was documented before the IEE took place. That caused a flurry of activity, and an IEP meeting was held the next day, granting my son a lot of services and support. At the same time, I obtained a doctor's report from an HMO physician documenting my son's Nonverbal Learning Disorder. The new diagnosis was also included in the paperwork at the school. I started to relax and come to terms with being an advocate for my son.

Summer came and went, and there has been another flurry of activity in September gearing up for his first experience in the Resource Specialist Program (RSP) where he goes 90 minutes per day. His homework load is much less this year. Partly because his teacher has a kind heart. His teacher doesn't want to send home unfinished schoolwork for any of the kids in the class. It is refreshing to hear a teacher who respects the children and their need for down time. I pray that my son has a good year this year. Body, mind and soul.

The meeting went well

I took care getting dressed today. I wore a crisp white shirt and black flat-front pants from Ann Taylor. With pearls. Professional. Here are pics of me after the meeting, posing with baby A.

Everyone was polite. And I got everything that I wanted. The most interesting part was when I asked to have a record removed from his cumulative school file under the Family Education Rights and Privacy Act (FERPA). The principal asked to see the paper and the moment she looked at it she said, "this is illegal." She said she would have it shredded immediately. And the references to the paper in the meeting minutes will not refer to the objectionable terminology directly, so the vicious name-calling against my son will stop there. Done.

And I asked them to put those other 2 items that were left off of his accommodations list back on, the use of the Alpha Smarts computer and the teacher checking the backpack to make sure he has all his material to go home. Done.

We signed the Occupational Therapy goals so that can start now. Done.

They agreed to re-assess him for long-term recall, because he scored unusually low. The psychologist says that the score might not reflect his true recall because she felt he had trouble paying attention to that portion of the testing. So shouldn't it be repeated? Done.

I asked what the procedure was to get an in-service seminar at the school to educate the staff about Nonverbal Learning Disorder. The principal asked if I could find someone to teach it, and I said that I could. She said she would work with me on it, as long as it was research-based. And that it would be for the staff that works directly with R***. I hope I can find someone good in my area to teach this. Won't it be great to educate them? They are still reacting to my son as if everything he does is because of Attention Deficit. They really don't understand his neurological condition. So I need to do research on this. But the possibilities are exciting.

All in all I think we are moving in the right direction. We will meet again in about a month to go over the results of the psychological and speech/language assessments.

My heart hurts

Be careful what you ask for.

I asked for my son's cumulative file from the school to prepare for this Friday's IEP meeting. :-( I feel like I have been stabbed repeatedly. Gosh, I know that the teachers make these notes assuming the parent will never read them. But YIKES! The negativity! The sickening, judgmental comments! They repeat stuff the mean kids in class say about him. It is truly horrible. I wouldn't wish this on any parent.

The reason I endure the torture is that these negative statements are ammunition for me to use in upcoming meetings. He will be undergoing a speech and language therapy assessment soon to evaluate for socialization, and the negative comments and criticisms about him will help to qualify him.

I also went through the IEP form, twenty pages, to glean the accommodations out, so that I could help the teacher to not "forget" to do the things they promised. Here is a copy of the email.

I am going over the IEP carefully, and I have retyped the listed accommodations, so that nothing gets lost in the shuffle. Here is the list I typed from what was written into the IEP things in parentheses are my own comments, question marks are things not clear to me:

Accommodations listed P. 6 of IEP 6/13/2008
Preferred seating
Small group setting for district-wide assessments
Opportunities to recheck work and correct for higher grade
Visual supports?
Verbal and non-verbal prompting
Access to multiplication chart
Graph paper
List of key words?
Color coded graphic organizers?
Access to a dictionary or thesaurus
Chunked assignments and tests (with break times?)
Untimed tests
Fidget object (sensory object)
Out of grade level testing for writing prompt
Opportunities to get up and move
Teacher to check reminder binder
Reduced assignments
Oral responses for tests or assignments (should read oral administration of tests?)
Front-loading (prior warning?) for changes in schedule

Supervised breaks during CST English and Math testing sections within a section of the test, and also for district wide assessments

Additional accommodations listed on IEP page 19 in meeting comments:

Visual checklists
Signatures to reminder binder daily
Minimize materials at desk
Instruction for use of sensory object w/o drawing attention to himself
STAR testing and also multiple district measures in small group
Spelling words provided in advance
Long-term project information be communicated directly to parent, with expectations and due date
Peer mentor program
Lunch bunch group


Also, I saw a couple of items that were proposed on the 5/1/08 504 plan that were perhaps inadvertantly left out of the IEP:

Accommodations on proposed 504 plan from 5/1/2008

Use of Alpha Smarts or computer in class for lengthy writing assignments
Teacher to check that R*** has all the necessary materials in his back pack to go home

I have made sure R*** has had extra sections of keyboarding tutoring at Score this past month, and his typing skills have improved markedly, so I think he will be ready to take advantage of computer/Alpha Smarts accommodations. I will make sure to bring this up at the IEP meeting to see if we can include that in his present list of accommodations.

I also want to follow up on your comment on back-to-school night that R***'s classroom behavior is a problem. The next step as I see it would be to request an in-class behavioral aide for him, as Dr. *** noted that R*** does respond to redirection, "it should be noted that he could easily be redirected back to task demands when his concentration drifted." I'm also wondering, given the fact that you have 6 RSP students in your room, would not the presence of a classroom aide be of benefit to the overall situation for the class?

I am cc-ing Mrs. M, as a lot of this is in her area. I am trying to make sure I communicate to the IEP team in advance of our meeting what is on my mind so that we can have a more effective meeting.

terminology

I saw a post about how people use the term "Down's Syndrome". A mother of a baby with Down Syndrome wanted to explain that some of the ways people refer to her child are offensive. For example, calling her baby a "Down's Baby" is wrong. It is wrong to label anybody by their illness or condition. That is like saying "cancer baby" or "crack baby". Offensive. And the term is Down Syndrome, not Down's Syndrome or Down's. A child with Down Syndrome, is an appropriate way to say it. So I replied to her, remembering what I learned at the TASK seminar I went to.

I agree. I learned about this only recently when I went to a seminar to learn about handling my son's special education needs.

The term is "individuals with special needs" or a child with special needs. Not learning disabled, but a child with a learning disability.

Or, a child is not "autistic", but he is a child with autism, or an individual with autism.

Also, they told me that the word "handicapped" is offensive, which I never knew. It describes how folks used to be forced to beg for money on the street with their cap in their hand. :-(

Now I like to think of myself as a sensitive person. And if I was able to get through over 40 years of living without knowing these things, I bet there are others out there too, who might benefit from knowing this.

Making Travel Plans

My Dad emailed me this week that his sister has terminal cancer. :-( I have decided to go and visit her now, ASAP. So baby A and I will be hopping on a plane for a visit the first weekend of October. My aunt is pretty upset by this news. I hope we can bring a little sunshine to her days.

This is a side of the family that I don't know very well. My aunt has 4 daughters, all about my age, and they have 12 children between them. This will be a long-awaited family reunion for me.

I read a really good blog post this week about breastfeeding on an airplane. I had no idea that I would be putting the suggestions to use so soon.

Tips for Breastfeeding on a Plane

Yummy cooking

I said I was cooking more lately, and here is some evidence.

This is beef stew in the crock pot.


This is spinach lasagna:


And this is banana nut bread. A great way to avoid wasting those last, overripe bananas. Mash them with the potato masher, throw in the rest of the ingredients, and you have yummy bread that the kids will actually *eat*.

We will never forget 09-11-2001

Keyboarding success!

The stepped-up keyboarding tutoring worked! My son had a list of 15 spelling words to write in a list yesterday. I took him to the computer and got the right page up and ready, then went downstairs to cook dinner; I figured I had plenty of time. He came hopping downstairs 7 minutes later saying he was DONE. This same type of assignment took him 30 minutes to complete just a few months ago. He was SO proud of himself. He said, "hey, those Score! keyboarding sessions really worked." I gave him the biggest hug. What a kid!

No more cheap tutoring at Score!

A few weeks ago the folks at Score! tutoring informed me that they were no longer offering the low-cost computer tutoring on site. They would offer computer tutoring online from home, or small-group tutoring on site. The online tutoring will not work for us, because part of the value of paying money is that *they* are the ones that have to cajole my son into doing his work and moving from section to section instead of me. He and I have enough struggles just getting through homework every day. I am NOT going to supervise him and crack the whip to get him through an online program. The small group tutoring is a good idea, but we have that covered already, as R*** will be receiving special ed help in small groups in the 2 areas, math and writing, identified by Score! I told them this, and also that, since they are no longer the best-priced tutoring in town, there is no longer any incentive to drive the extra miles to get there. There are tons of expensive tutoring services much closer to my home. So this means goodbye.

Plan B must now go into effect, which means I switched my son's tutoring schedule and loaded it up with lots of sections on keyboarding skills, and less on academics. I'm doing this because one of his accommodations will be that he can type instead of hand write his homework, and if he has no typing skills, this will not help him. In the long run, keyboarding skills will be a great help to him. And in the short run, he finds the keyboarding sections much more fun to do, as it is set up like a video game the way they teach it, so he is having more fun and less pressure these past few weeks at Score! This will all be over on November 18th, when they rip all the computers out.

Taking a deeper bite out of life

Let me explain what I mean by that. I have been working harder lately at all the areas of my life that are meaningful to me.

For example, I have begun putting a lot more effort into menu planning and cooking these past 3 weeks. Planning ahead eliminates the stressful panic that sets in around 3 or 4 in the afternoon when there is nothing planned or thawed for dinner. On Sundays, I take out my favorite cookbooks or recipe collections and plan the week. I make sure that Tuesdays and Thursdays (jujitsu nights) have some sort of crock pot or casserole dinner. The other nights can have more labor-intensive dishes. All the ingredients not already in the house go on the shopping list. And I have been trying new recipes, some of which have turned out to be really good. Last night was Chinese Hot and Sour Soup with Tofu, along with a Chinese Chicken Salad. This was made using the leftovers from the Crock Pot Chicken Curry (with rice) the night before. Sunday's dinner turned out absolutely wonderful. I found a recipe that I had clipped out of Family Circle magazine years ago for Vegetable Quesadillas. To make this, I sauteed chopped fresh jalapeno pepper with onions, added zucchini, tomato and corn. Then placed the vegetables onto flour tortillas topped with kosher cheddar and string cheese, placed back into the pan to toast both sides. The flavor combination was amazing. The boys had plain cheese quesadillas. And last week I recall planning a crock pot beef night (chuck roast), followed by spaghetti night using the leftover shredded beef instead of ground beef. It was the first time trying that, and it worked. Prior to this I had been having taco night to use up leftover beef or turkey from the crock pot, and it is so nice to have some additional recipes. I also found a nice turkey/sausage jambalaya (kosher) that is another way to use up those leftovers. And think of how happy the boys were to come home from school and see 8 custard cups full of cherry kosher jello. It's the little things, ya know?

Another major push is to give the TV some time off. The boys are all in school until 3 now (except for the baby, of course). There is homework to do in the afternoon, and if they come home and run straight to their TV shows, it is very hard to motivate them to come downstairs to do their homework. Not to mention the worry about TV watching causing/worsening ADD. Television shows are much more fast-paced and animated than real life, so childrens' brains get bored with the real world if they spend too much time in front of the television. The little ones don't have homework yet this week, but I have been getting out the boxes of toys stored in the garage for them to play with. I have my toys on a rotation, so I can take out "new" toys from the garage now and then and put away old toys until they become new again. Yesterday I took out a 4-year-old Rokenbok set. I forgot how fun this thing was. There are a bunch of remote control trucks that go around picking up these little balls and there are erector-set-like components that can be put together to shunt the balls onto conveyor belts and gutters/dumpers. Above is a picture from the net showing many of the toys we have. Amazingly, the toys still work. The boys are enthralled. And they are forced to work together cooperatively instead of flopping next to each other on the couches.

Yesterday was also my day to do emails/calls/letters to the school. I gave them day 1 as a free pass. It was day 2 yesterday, though, and it was time to check to see if the teachers/counselors were implementing all of the changes we worked out for my son for his 4th grade school year. Here is the email I wrote to his teacher.

Dear Mr. S***,
I would like to schedule a time to meet with you to discuss R***. There were a lot of changes to his IEP in June just before school let out. And he also got a new diagnosis from his Kaiser doctor, Nonverbal Learning Disorder. This learning disability is often misdiagnosed as ADD.
I would love an opportunity to go over the hallmarks of Nonverbal Learning Disorder with you, along with the accommodations and modifications that are listed in R***'s IEP. And hopefully we can come up with a plan so that we can help R*** to achieve his full potential for learning this year.

Here is what I wrote to the special ed teacher.

Dear Mrs. M***,
I expect we will be meeting soon because there will be an IEP meeting to discuss the vocational rehab assessment that was done in July.
There is a nice article online that discusses Nonverbal Learning Disorder as it relates to behavior in the classroom. Nonverbal Learning Disorder is often misdiagnosed as ADD. So it might be helpful to read about it, as you will be spending a lot of time this year working with R***. R***'s case is severe. His verbal IQ, as you may recall, is gifted (132), and his nonverbal IQ is only 14 points above mental retardation (84). So when he appears to be inattentive, it may be an inability to remember multi-step directions (having trouble getting started on an assignment), or a strategy of avoidance of work that is truly overwhelming for him conceptually.
He has continued pulling out his eyelashes this summer, as you will note when you see him. He did so mostly when attending summer school and the Score! tutoring service. I will contact the school psychologist for ways we can help him with that. I believe that she suggested that he be given a stress ball for use at his desk, but I don't believe that has happened yet.
Please contact me at your convenience.

And I wrote this email to the school psychologist.

Dear Ms. C***,
Hi! I hope you had a good summer. R*** had fun, but he has continued to pull out his eyelashes, mostly at summer school and while attending the Score! tutoring service. He never got a stress ball to use, as far as I know. Are there any available now? Can R*** have some counseling sessions with you to help him with this? I would like to get R*** help this year so we have a better year. I think the bullying last year bothered him a lot. I found some evidence at home that I would like to talk to you about. I think he requires social training in addition to one-on-one counseling in order to benefit from his education. I hope this help can be obtained for R*** sooner rather than later. Thank you for your help.

She called me back within the hour, during which time I re-read his IEP notes from last year, and I saw that he was already granted, in writing, a promise for a psychological work-up and a speech-therapy workup (social skills), in addition to the occupational therapy assessment that he received this summer. She also gave me the heads-up on the OT results. He *did* qualify for therapy for his fine motor (bad handwriting). I am actually really happy with the paperwork that we came up with last June. It covers all the bases I want covered for him at this point. And it includes his new diagnosis. And even though they left in ADD as his primary diagnosis, the accommodations/modifications are the same as he would be getting for Nonverbal Learning Disorder, so that's fine. And I am not saying that there is not an ADD component to it, but since NVLD is often mistaken for ADD, there is no certainty that he has a valid case of ADD. And I can guarantee you, as his Mother, that his type of ADD would not benefit from medication. I just know. And that's too bad for the school staff who urged me to medicate him in our meeting last May when they denied he had NVLD and insisted he had only ADD. I know that they wanted me to start him on medication so that the problem would Go Away. Well, guess what. We are not going away, and R*** is going to need services and therapy and help because he has special needs. Oh, and the school counselor agreed that the jujitsu was a good thing for R*** and that he should stay in it.

Additionally, I am continuing to use my Palm Treo daily planner to list all the things I have going on. There is so much to do nowadays. Today is the school uniform sale. Tomorrow I am meeting the Mom's Club in the park while R*** is at tutoring. Sunday R*** and his younger bro A***start Hebrew School again. The week after A*** starts piano lessons. Gosh, is there anything I have forgotten? I hope not.