The IEP Meeting

This past week we had Ellie's IEP meeting (that is an ARD for all you Texas folks).  I have written about the IEP process last year here,  here (guest blogger), here, and here so this is more of a personal Ellie Bear IEP post rather than general IEP information.

Because Ellie has a mid-September birthday, her IEP meeting was held after the start of school as the IEP is valid for 1 year.  I brought baked goodies and I wore mascara.  And a skirt.  I sort of figured that jean shorts and a tank top didn't scream "team member".

It went well.

I learned this year just how much I didn't know last year.  How I didn't know about the inner-workings of Ellie's school.  I was completely clueless. I asked questions, but not the right ones. You see, I blindly listened to Ellie's Early Childhood Therapist when she told me that Ellie's program was inclusive--kids with special needs and some of the teacher's kids all in the same classroom. Last year, a few months into the school year, I discovered that her class was not inclusive, but rather all the kids have special needs.  I did not ask the right questions. Mama fail.

This year, I thought it would be great for Ellie to spend some time in the typical Pre-K classroom.  I brushed up on IDEA and read about LRE [least restrictive environment].  Ellie's ABA therapist sent me many articles to help build Ellie's case.  I learned that "IDEA's least restrictive environment directive requires the inclusion of children with disabilities in the general education program to the maximum extent appropriate".  Of course "maximum extent appropriate" can be translated in many ways, but this basically means that pre-k aged children with disabilities should be placed in typical early education classroom if possible.  As in Ellie should spend time in the typical Pre-K at her school.  Or so I thought.

I mentioned my idea to the teacher about 1.5 weeks prior to her IEP meeting.  The teacher looked uneasy and told me that she didn't think it would happen.  The teacher contacted the principal and the teacher of the Pre-K.  About 1 week prior to her IEP meeting, I learned that this was not possible.  You see, the Pre-K at her school is for children who turn 4 years-old by the end of August.  Ellie has a mid-September birthday.  She was not old enough.  The teacher tried and for that, I am grateful.  If they waived the age requirement for Ellie, they would have to do so for all children.

However, the typical Pre-K shares activities in Ellie's classroom.  They may spend time in social play, circle time, music time, and during other activities.  Recess is shared.  In a way, Ellie is not in a completely secluded classroom environment.  She did/does have activities with typical peers.

Back to Ellie's IEP meeting.  Ellie's teacher and I had something called a Pre-ARD.  This is where we spent over 2 hours discussing Ellie's learning behaviors, her strengths, her weaknesses, as well as her progress and regression over the summer.  We truly were a team trying to come up with attainable, but challenging goals specific to Ellie.  I learned, but was not truly surprised, that Ellie has a lot of behavioral "issues".  These issues really relate to her ADHD.  The inattentiveness, impulsivity, and hyperactivity are greatly affecting how she learns.  Actually, they impair her learning and her social interactions.  She has several behavioral goals such as "Ellie will sit in her chair during circle time for 2 minutes" [30 seconds is a challenge] or "Ellie will hang up her backpack upon entering the classroom with 1 prompt".  Ellie can hang up her backpack.  She knows to hang up her backpack.  Yet, she gets distracted by other people's backpacks.  Or she needs to hang from the hooks in her cubby.

We developed several goals that build on last year's goals such as Ellie will take 3 turns with a peer and a teacher.   Last year's goal only included a teacher and so we added a peer this year.  At the actual IEP meeting, we also discussed speech therapy [ST] and occupational therapy [OT] goals.

Finally, Ellie's teacher spoke with the typical Pre-K teacher and hand selected two peers to serve as role model's for Ellie.  These peers will help Ellie learn social skills and hopefully improve speech and behavior.  Pairing typical peers with a child who has a disability helps children learn new skills--both for the child with a disability and for the child who is typically developing.  This is called Peer-Mediated Intervention/Instruction and has been proven to be an effective strategy in promoting learning and social and communication development.

I am excited about this upcoming school year.  I feel like Ellie has people who are truly interested in her and that Ellie is going to accomplish great things.

Yes, I know this pic was in the last post but I just love it so much!

References:
Harris, K., Pretti-Frontczak, K., and Brown, T. (2009). Peer-Mediated Intervention. Young Children, 43-49. 

Including Children with Disabilities in State Pre-K Programs. Education Law Center/Standing Ip for Public School Children. (Feb. 2010).

IDEA The Manual for Parents and Students About Special Education Services in Texas. (2012) A joint project of The Arc of Texas and Disability Rights Texas.

Happy 4th Birthday, Ellie Bear!

Four years ago today, Ellie came into our lives.  How we survived before her diva presence is beyond me as I cannot imagine my life without her.   More pictures next week as she is having her Minnie Mouse Bow-tique Birthday Bash next weekend.

Ellie turned 3 years-old:

Ellie turned 2 years-old:

Ellie turned 1 year-old:

Ellie was born:

September 16, 2009

My daughter is the mean kid

Exasperated is what I am feeling right about now.  I had been so worried about kids being mean to her because she is different that I never thought about Ellie being the kid hitting and shirt pulling.  I was so worried that kids wouldn't want to be friends with her because of her Down syndrome that I never thought she'd have her aggressive, grabby behaviors would prevent her from forming friendships with kids in her class.

My daughter, while her intentions are innocent and are not maleficent, is not very kind to her fellow classmates, therapists, or her own mother.  When she doesn't want to do something, she lashes out with her hands.  Slapping at us.  She doesn't want to wear shoes, I get hit.  She doesn't want to work on that book with her therapist, the book gets hit and shoved violently away.

She has something the school and I call the "arm sweep".  It isn't exactly shoving, but rather a sweep of an arm to move a child away from her.  Some of these kids are up in her personal space (although Ellie has no concept of other people's space--sure, let me climb all over you and sit in your lap) and she performs the arm sweep to move them away.  A child may be on top of the slide waiting to go down, but my impulsive little angel performs the arm sweep and goes barreling down the slide.

Then there is the shirt pulling.  It used to be she grabbed a kid's shirt or hoodie if it was brightly colored.  Or sparkly.  Especially if it was sparkly. Now she does it to physically pull the "friend" to her. It is her not-so-very good way of saying "play with me".  What child wants to be strangled with their shirt by a grabby little 4 year-old?

If you are an adult, hold onto your glasses.  Many times Ellie steals glasses to perform a "trade".  An, I give you my necklace, hat, or sunglasses for your glasses or hat.  She likes to use my glasses for a trade.  She also likes to remove my glasses in a huff because she is angry at me.  She knows it irks me so I am trying to be much calmer and use a nice soft voice.  It may or may not be working.  I cannot tell.

Yes, she has communication difficulties.  Yes, she has social deficits.  Yes, she has a naughty temper.

I have the mean kid at school.  The kid that "arm sweeps".  The kid that is "grabby" and "can't keep her hands to herself".  The kids that pulls shirts and slaps at adults.  I have the child that will have trouble making friends because who wants to hang out with the kid that might hit them.

I have learned that immediate consequences do not change her behavior.  Immediate scolding.  Immediate time outs.  These do nothing.  She repeats the undesired behavior. . . immediately.  We are working with Ellie's ABA therapist and have started a Social Story on the iPad.  This story has sad and happy pictures of Ellie and myself.  It has audio that goes something like this "hand are not for hitting.  hands are for eating.  hands are for drinking. hands are not for hitting.".   We are also showing her how to use "soft hands".  The school and I worked together to find a PEC that Ellie can use to say "I want to play." rather than shirt pulling.  The kids at school are told to say "Ellie, hands down".  I do not know if any of this will work, but my heart is broken.  I want my daughter to have friends and to be loved.   Plus, I am tired of getting beat on.

Ellie Antics

That's right folks!  It is time for another edition of Ellie antics.  A blog post that will probably embarrass my little Bear when she is a teenager.

• Curtain rods are not as sturdy as they appear to be.  When Bear was boycotting bedtime, I went in to check on her.  I discovered Ellie, naked from the waist down clutching her PJ bottoms.  Her diaper was in the middle of the room.  Her curtains. . . well that obnoxiously pink cupcake fabric was pooled on the floor and the curtain rod was bent in a such a way it looked like modern art.  Me thinks the Bear tried to hang from the curtains again.

• Ellie only cares about fashion.  She inherited this obsession from my niece Haleigh and most definitely not from me. 
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• I bought these boots back in the day for the whopping 3 days of cold weather we have in Austin during "winter".  Ellie refused to wear them.  There were tantrums.  And kicking.  And crying. And "nooooo!!!".  Now that we have lovely weather in the triple digits, these boots are the most stylish accessary ever.  These "Boooo" must be worn for every occasion.  Remember, black goes with everything.  As does yellow.  Who cares that they are almost too small.  We must make small sacrifices for fashion.
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• It is important to coordinate.  When one is watching Sofia the First, one must wear the Sofia dress while holding the plush Sofia doll.

• The Bear is a big fan of the Monkey Mouse.  I mean, Mickey Mouse.  In the beginning, Ellie only signed "monkey" for Mickey Mouse.  Andrew and I were confused and were trying to figure out what books / TV show had a monkey in it.  When we finally figured it out, Andrew would sign "mouse" and say "Oh you want to watch the mouse!"  Ellie started to sign "mouse", but would then look back at us and adamantly sign "monkey" afterwards.  It was as though she was humoring us by adding in "mouse".

• Juice, I mean Sofia.  Ellie is trying hard to communicate.  The thing is, she makes up signs and I am left trying to decipher them.  Sometimes, it takes me a month to figure it out and in that time, Ellie gets rather agitated.  I tried to teach Ellie the sign for princess as in the character Princess Sofia of Disney's Sofia the First.  Some how, Ellie started to sign a slight variation of juice (which does not look like princess at all) and say "ah".  Bear would become rather annoyed and then frustrated when I would give her juice.  I would get rather frustrated and annoyed when she wouldn't accept the juice that she requested.  I wanted to throw a tantrum.  I finally figured out that when she says "ah" she is saying the end of So-fee-AH.  Why she signs juice is beyond me.

I have no explanation.

• A little TMI here.  Someone prefers to poop after going down for the night.  Seriously, children will do anything to delay bedtime.  

• A potty training update: I think the Chunky Chicken is making some good headway.  Either just before she pees or right as she is peeing, Ellie grabs her diaper.  The problem is that she hasn't learned about privacy yet.  Ellie, it is NOT appropriate to remove your diaper while at the bottom of a slide at the indoor play scape.

Diva!

• The trash.  We have been trying to transition Ellie from a high chair to a regular chair in a restaurant.  Ellie does okay provided we go when she is really hungry and we have the iPad.  I used to be one of those high and mighty people who said "when I have kids, they will never sit at a table with an electronic device".  Then I became a mom to a hyperactive Tasmanian devil.  Anyway, at home, my little girl is learning all about the sink vs. trash.  Apparently, this life lesson extends to restaurant settings. We have to hide straw wrappers and empty splenda packets from Ellie because she thinks it is imperative to run them to the trash can then and there.  It can not wait! Little Miss runs to the trash not worrying about who is in her way.  When she goes to return to her chair, she saunters on back like the Queen of Sheba and then gets distracted by every BABY!

The Bus, Yeah Yeah Oh Yeah

Sunday night, Andrew told Ellie that the bus was coming the next morning.  We are not sure what Ellie's concept of time is and we were concerned that she thought that she was going to ride the bus immediately.  So we spent some time telling her:

"First you must go night night to bed.  Then you ride the bus in the morning.  First sleep ALL NIGHT, then bus."

I think she got it because Monday morning, when I woke her up (yes, the one day we have to wake up early she decides to sleep in), she does not greet me with her typical "mama or da dada da", but rather frantically signs "bus" accompanied by a yelling of "yeah, yeah, oh yeah".  Ellie then proceeds to head over to her little table, grabs her water bottle, and then carefully slides it into the mesh cup holder on her back pack.  She removes her annoyingly bright magenta Minnie Mouse backpack (did I mention it was magenta with bright pink glitter circles?  Did I mention the glitter? And the pink?) from her wall hook and signs "bus" again.  She was clad only in a diaper and her PJ top.  Ellie was ready even if she was half clothed.

She's not excited or anything

As a mom, I worry about school.  Will she become upset when the bus drives away without us and stops at several people's homes before ending up at the school?  Will she be teased because she cannot talk and because she still wears pull ups?  What actually happens at school?  Will she eat her lunch or will she just play with it?  Will she be an ornery little thing and shove or bite another child?

She started to get annoyed with the mama paparazzi

When the big yellow bus arrived, Bear marched on up those steps with assistance, looked at Andrew and me, and grinned.  My girl was okay.  She is a big girl. . . and I am a proud weepy mama bear.

Bottom right: She is waving at us "bye mom and dad! I totally don't need you any more.  I am a big girl"

*School note from school: "Ellie had a good day.  We spent the morning learning the routine.  She played with play-doh for a long time and needed a few verbal reminders to not put it in her mouth.  She had speech and adaptive PE today." Her lunch box came home empty :)

On Leaded Ground: an update on lead poisoning

I feel as though I am beating my head against a brick wall and I am not holding out a lot of hope that I will pinpoint the source of lead that is poisoning my Ellie Bear.

Using the home testing kit, I have investigated: the paint on the window-sills, an old set of blinds, the built-in shelves, the doors near the hinges, and the metal casings on the windows. You must thoroughly clean each site and be sure to scrape down through all layers of paint/glaze so my house has some scratched up, notched out doors, shelves, and window sills.  I also tested: her baby dolls, puzzles, flashcards, Little People from a consignment sale, dishes, cups, straws, and utensils.   I tested all of her chewy tubes as well. It was really quite morbid--I had to carve out pieces of the baby doll and her Little People, etc to get through all layers of vinyl/plastic/paint.  
Everything has come up negative.  Of course, there can always be false negatives.

The only thing that I have discovered is just how disgustingly dirty our house is.

I am confident that our house is safe given the results of the home test kit and the fact that our house was built after 1978.  However, I still have surrounding soil and the elementary school to investigate.  Additionally, I had my lead levels checked and I have no lead in my blood so I am thinking that our pipes are okay.

A few weeks ago, I had an interesting phone call with The Texas Department of Health and Human Services.  Interesting because I cannot figure out exactly what happened.  This woman, while very kind, seemed somewhat knowledgeable, but also did not speak in cohesive sentences and seemed to give out some inappropriate advice.  I did take away the following:

• Her lead levels are high, but not high enough for the Department of Health to test our house.  

• We should retest in 6 months to see to see if her body is flushing out the lead or if she is being continually exposed.

• We also don't know when Ellie was exposed as it takes anywhere from weeks to years for lead to build up in the blood.

• Apparently, my daughter may have anemia or thalassemia.  She should see hematology.  Ummmm, okay.  I get the anemia part as iron and lead compete for the same binding sites in the blood and lead tends to win out so you have less iron in the blood--hence the development of iron-deficiency anemia.  Yet, I am not sure why she is thinking thalassemia though and her explanation didn't really ring evidence-based to me.

• More children from Ellie's class must show signs of lead poisoning or have lab-verified high levels of lead in their blood before the school will be tested by the Department of Health.

• Schools do not keep records.  Well they might.  Yet, they may not be available.  We may need a lawyer to access the results.  But we may not.  But they probably don't have a record.  She isn't sure who I would contact to get this information--I told you it was an interesting conversation.

• Lead tastes sweet so it is not uncommon for kids to be naturally drawn to materials with lead in them.

• There is a theory that children with Down syndrome and children with autism have missing cellular villi in their gut (the tiny little hairs in the intestines).  These missing villi affect the absorption of lead.

• Ellie may need a bronchoscopy if she swallowed an object made with lead.  This would not be covered by insurance unless her lead levels were in the 200s, which they are not. 

With regards to the school, Ellie's class is full of children under the age of 6 who have speech delays, behavioral issues, and other developmental delays--all signs of lead toxicity.  The question is: are these delays exacerbated by lead or are these delays apart of their underlying disorder /syndrome/ illeness?  I will be talking to her teacher and contacting the parents from last year to notify them of Ellie's elevated lead levels so that they may have their children tested.  I plan to speak with the principal to find out if her school has been tested for lead in the past and how I could access those results.

I will also be stealing soil from the school's playground and sending that out for testing.  This costs money.  I am not sure how much, but I think it would be well worth it.

Many of you have asked about certain supplements to help the body rid itself of lead. A sort of natural detox or chelation therapy.

The kind lady that I spoke with at the Department of Health who was just spouting off random things kept telling us to generously supplement Ellie with iron until she gets constipated and her stools turn black. And then to keep on supplementing.  Iron likes to hang out in the red blood cells [RBC]. This is good.  RBCs carry oxygen around to the cells and you want those bad boys functioning properly. The binding sites in RBCs tend to prefer lead over iron.  This means that the body excretes iron and the lead accumulates in the blood.  This is not good.  Being tired and pale are signs of iron-deficiency anemia.    A simple CBC [complete blood count] can tell you if your child has anemia.  My concern about flooding Ellie with iron supplements is this--iron toxicity [the signs of iron toxicity are quite scary and include intestinal damage such as bloody vomit, seizures, coma, liver damage, and clotting problems].  Her PCP did not recommend iron supplements because Ellie does not have anemia, but some health care providers might and it is all dependent upon the results of your child's blood work.  Again, do not run out and buy iron supplements unless our child's PCP tells you to.

If you are advised to supplement with iron, administer it with Vitamin C, such as a glass of orange juice.  The Vitamin C helps aide the absorption of Iron.  Milk, on the other hand, decreases the absorption.  This stands to reason that foods with Vitamin C such as citrus, berries, and many veggies, will help iron bind to sites in the RBCs and possibly displace the lead.  Therefore, lowing lead levels.

Just as lead can be floating around in the blood, it can also accumulate in the bones.  There are thoughts that Vitamin D actually increases the lead levels where as other studies suggest it lowers lead levels.  Talk about confusing!  That is because it is the same for calcium as it is for iron.  Calcium requires Vitamin D to help deposit itself into the bones.  Low Vitamin D means, less calcium absorption, and therefore weaker bones.  When calcium displaces lead from the bones, the lead is released into the blood. Most of the studies I have read recommend Vitamin D3 supplements along with a diet high in calcium. (Remember back when Bear had rickets/ very low Vitamin D levels?!)

I also read that Selenium, Cilantro, and Garlic have also been proven to reduce heavy metal (i.e. lead, mercury) levels in chickens. I wonder if the same can be said for humans?

Again, before starting any supplement, please speak with your child's health care provider.

Right now I am sticking with an over-the-counter multi-vitamin and Vitamin D3 while maintaining a diet rich in fruits (veggies when I can sneak them in) and iron-fortified bread products and dairy for Ellie. The Bear is predominantly a vegetarian.  She is clearly not my child nor a true Texan.  Otherwise, I would make sure she gets some healthy proteins in the form of chicken, turkey, and brisket.

I would also like to share with you potential sources of lead that friends have suggested:

• Playground equipment with chipped paint
• Sandboxes 
• Toy jewelry
• Hand-me-down toys, consignment shop toys, toys where you do not know how old they are
• Toys from China
• Toys at the school
• Non-Crayola Chalk
• Wires from lamps and extension cords
• Plumbing-the lead soldering joining copper pipes together
• Glaze on bathtubs

At this point, I would not be surprised if we never found the source of lead.  It could be an accumulation of lead from several areas seeing as Bear likes to mouth objects and taste sand from playgrounds.  It could be the school, but it could also be a playground.  It could still also be our home-from leaded soil tracked into our house.


*Please note that this post does not substitute any medical advice from your child's health care provider.  This post is to share my experience and only that. If you have concerns that your child has elevated lead levels, please contact your child's pediatrician.  Please do not stop or start any medications or supplements without speaking with your child's health care provider.*

Even Princesses

. . . play with flashcards

. . . do house work

. . . use a chewy

. . . deserve loves and hugs