Sunday, September 30, 2012

Rarely Photographed

There is a very good reason as to why I rarely appear in photographs with my daughter.  Aside from the fact that I am the one usually behind the camera. . .

This is our best picture.  She isn't even looking at the camera!

Ta-Da!  Boneless-Toddler Move.

The escape.

I decided to try a new approach.

New approach = epic fail

That is why it is so important to have an excellent professional photographer.  My friend, Jen Mishkin, is a fabulous photographer who captures stunning imagines of children, families, engagements, maternity, and wee little newborn bambinos.  She is very talented and has a very big heart.  Jen wanted to do something special in honor of Down Syndrome Awareness Month.  You see, her handsome little boy, L is sweethearts with my two-timing, blue-eyed, Sassy Pants Ellie.

For the Month of October, 50% of the session fee will be donated to the Down Syndrome Association of Central Texas [DSACT].




Please visit www.jenmishkin.com

Thank you, Jen, for your friendship.  For all that you are and all that you do.
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Friday, September 28, 2012

Vitamin D Deficiency: More Common Than You Think

Rickets.  You do not hear about that condition very much these days and yet, it is on the rise.

You would think that as a pediatric health care provider I would have been on top of things.  However, I missed this.  Oh how I missed it and I am kicking myself.  Bad mama!  Thankfully, Ellie's endocrinologist had the foresight to perform a routine screen of not only Ellie's thyroid hormones (children with Ds are at a higher risk of hypothyroidism and should be screened annually), but also her Vitamin D levels.

She has very low levels of Vitamin D.  Low enough that it warranted a 6pm phone call from the endocrinologist to urge us to start therapy ASAP even though our appointment is actually in just a few weeks.



The Bear is now at risk for:

  • Brittle bones and fractures
  • Delayed growth
  • Dental anomalies
  • Bowed legs
  • Insulin resistance and diabetes-Type 1 & Type 2
  • Seizures-due to low calcium levels
  • Suppressed immunity (i.e. decreased ability to fight off infections)
  • Heart rhythm anomalies (related to low calcium levels)
  • Muscle weakness and cramps
  • Possibly some cancers
Now I am even more paranoid about her breaking a bone.



Why should we care?  What exactly does our body do with Vitamin D?

Vitamin D and Calcium have a symbiotic relationship.  Vitamin D helps bones absorb calcium in the gastrointestinal system.  With low levels of Vitamin D, approximately only 15% of dietary calcium may be absorbed.  If you think about how young children are trying to grow and thus form sturdy bones, poor vitamin D intake (either from skin absorption from the sun or by dietary intake) can lead to poor calcium absorption and therefore weaker bones.  Hence, the increase in fractures or bowing of the legs.

Calcium is not only for our skeletal structure. It is, infact, involved in how our heart operates and muscle contractions.  Again, low Vitamin D leads to poor calcium absorption which leads to heart problems, low muscle tone, and muscle spasms.

Vitamin D also plays huge roles in cellular growth, the neuromuscular system, and in immune function.




Why are Vitamin D deficiencies on the rise?

You would think that since we have access to many sources of fortified foods such as milk and orange juice that proper levels of Vitamin D would be easy to obtain.  The Bear, however, has a milk intolerance as do many children these days.  She also does not eat fatty fish or eggs.  (she is rather picky!).  While breast feeding in the U.S. is increasing (whoo hoo!), mama's milk is not fortified with Vitamin D and therefore supplementation is recommended.

Still not getting enough Vitamin D: cloudy, legs covered, not outside long enough
Skin exposure to the sun can lead to the formation of Vitamin D .  However, many of us slather our children with sunscreen and fully cover them in clothing/hats/sunglasses (and with good reason!  Bye-bye skin cancer!).  Rainy climates or those like Texas where it is triple digits for many months can limit opportunities to soak up the sun.  Cloud coverage and even smog can affect the skin's ability to produce an adequate amount of Vitamin D.  To receive enough UVB rays to synthesis Vitamin D, a person would have to be mostly exposed (legs, arms, face, and possibly back) to the sun during peak hours of 10am to 3pm (school/daycare hours) for anywhere from 5-30 minutes without sunscreen!  I don't know about you, but I am not a big fan of skin cancer.  Additionally, in 2003, The American Academy of Pediatrics recommended limiting sun exposure due to the risk for skin cancer, even for the purpose of receiving Vitamin D.

Those at higher risk include: breast-fed infants, those with darker skin, low exposure to sun light, poor dietary intake or Vegan diet, stomach ailments that decrease Vitamin D absorption such as celiacs disease or crohn's disease, kidney problems that prevent the conversion of Vitamin D to its active form.



What are the symptoms of low levels of Vitamin D?


  • Bowed Legs
  • Slowed Growth or Failure to Thrive
  • Delayed tooth formation 
  • Frequent cavities
  • Low muscle tone
  • Muscle cramps
  • Muscle spasms


Notice that some of these symptoms are similar to Down syndrome-slower growth, delayed tooth formation, low muscle tone. . .

A vitamin deficiency seems so innocuous, especially when many kids are asymptomatic.  A simple blood test can tell if your little bambino is deficient in this important vitamin.


Bowed Legs
I really didn't think about Vitamin D.  I figured that I had Ellie covered because, while a picky eater, I sometimes gave her vitamins and Fish Oil.  However, that may not be enough!

In fact, the American Academy of Pediatrics recently (actually in 2008), updated their recommendations:  all children should be taking supplemental Vitamin D--up to 400 IU daily.  The previous recommendation was 200 IU daily.  This is in addition to eating foods fortified with Vitamin D such as milk, tuna, salmon, fortified cereals and orange juice, fatty omega acids, eggs, yogurt, and cheese.



Lil' Critters Fish Oil contains 100 IU of Vitamin D
Lil Critters Multiple Vitamins contain 400 IU of Vitamin D
If you combine these together, the Vitamin D intake is over the recommended dosage.  However, look at the Lil' Critters serving size--it is not one, but TWO gummies of each.  If you use regular fish oil and not a gummy, like we occasional do, there may be no Vitamin D.

Additionally, if getting vitamins into your little picky toddler (i.e. Ellie Bear) is rather inconsistent, your child could be at risk.


If your child is already showing below normal levels, supplemental vitamin D is needed.  For instance, the Bear will be taking 2,000 IU daily of Vitamin D3 plus a prescription of 10,000 IU weekly!   Wish me luck in getting all of that into her.  My hope is that, in 3 months, we shall see her levels trend more towards normal.




Right now, I am very fortunate that my Climbing Monkey has not broken any of her "brittle" bones given her propensity to climb.


Please, at your next well-child check, ask her provider to measure her Vitamin D levels.  I do wonder just how long The Bear has been strutting around with low levels and poorly-forming bones.





References:
American Academy of Pediatrics: Guidelines for Vitamin D In-take. (2008)
Mayo Clinic: Nutrition & Healthy Eating.
NIH: Rickets. (updated 2012)
NIH: Health Professional Dietary Fact Sheet: Vitamin D
John' Hopkins Children's Center: Memo to Pediatricians: Screen All Children for Vitamin D Deficiency, Test Those at High Risk (2012)

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Monday, September 24, 2012

A School Update

I believe truancy may be in Ellie's future for I am sensing a pattern.  Back in June, my little Bear-Bear became very ill and missed her very first day of preschool.  Last week, Ellie missed the first TWO days of Pre-K at the elementary school.

Bear was probably holding that thermometer up to her nightlight.

Therefore, Wednesday ended up being Ellie's first official day of school. . . the first day on the bus.





Weeks before this hookie-playing adventure, Ellie and I would watch the Signing Time!'s School episode (I learned how to finger-spell glue and Ellie learned how to sign school and paint).   We picked out a ridiculously pink Hello Kitty backpack (she wanted an "ick cah" or pink cat) and a hippo lunchbox. I also read her the book Mouse Goes to School,  which depicted a bright yellow school bus and a little mouse.  The mouse would ride the bus to school, greet his teacher and friends, sit through some classes, and eat in the cafeteria.  Exactly like what Ellie would be doing every day in her PPCD class. Yes, Ellie does eat lunch in the cafeteria. We visited her teacher Miss K and the classroom prior to her IEP meeting.  I continually informed Ellie that her therapy buddy G would be on both the bus and in her class.

Just before Ellie met her teacher.  

The first day, the bus driver J and the bus aide L allowed Andrew and I to step onto the bus and buckle her into her car seat.  Contrary to what this picture shows, she started off great.  Ellie Bear just didn't want to be strapped down.  This was a long yellow school bus with a long aisle perfect for running.  Hyperactive Bear wanted to demonstrate her wicked sprinting skills.




I cried some tears and kept my phone on my person at all times.  I frequently checked the phone's screen in case I some how missed a call from the school.  I did not leave the house at all. Yes, I was on Facebook most of the time receiving supportive comments from all of my friends who have walked this road before me.




A little more than 2 hours later (early release day!) the school bus approaches, I am beyond anxious.  The doors open up and out bounded my little pixy.  She happily screamed "GUY" [bye] several times at the driver.  She then signed "bus" and waved as the bus turned the corner.  She gleefully ran into the house and wanted to watch The Wiggles.  I figured all went well.

Until I opened her backpack and removed the folder with a daily report from the teacher.

My heart plummeted.

The unhappy face was circled at the top of her report.


"Ellie was very sad and a bit confused coming off the bus.  K held her for about 15 minutes and L (another student) sang her some songs. . . . . "




I felt horrible and as though my heart was ripped out of my chest and crushed into tiny pieces beneath a large, steel-toed boot. I thought that I had prepared her for this day.  I mistakenly believed that because she always happily went to her summer preschool that she would love the PPCD school.  I also thought that she would love the big yellow school bus.


The problem is that explaining vs. experiencing are two very different things.  The concept of getting onto a bus without mommy or daddy, riding around the subdivision picking up strange children, and than arriving at school where there are much older children (this school goes up to 5th grade) is a rather difficult concept for most 3 year-olds to grasp.  Add in a cognitive delay and a receptive language delay and you have a real scary situation.




At the suggestion of some very wise friends, I created a little online book using the photographs I snapped of Ellie that morning and of some pictures I captured from when she met her teacher.  That afternoon and very early the next day, I sat with Ellie on my lap showing the pictures of her with her backpack, her school bus, sitting on the bus, and sitting outside the school.

Ellie is a visual learner and I really hoped that these would help her to understand.  However, on the second day, while she easily went into the arms of her aide, she looked pleadingly outside the bus window and screamed while signing "mama".  A desperate look on her face and big fat tears rolling down her cheeks which were turning red.


I sobbed this time.


Her daily report looked "prettier".  The happy face was circled with a comment of "fussed for about 5 minutes on arrival".





I know that it takes time.  I know that this is an adjustment for me and for her.  I also know that with a consistent routine, Ellie with come to understand what is expected.  She will enjoy, if not love school and she will tolerate, if not love the bus.  As I said before, this is a hard concept for her.  She WILL get it.  Yet, it just breaks my fragile mama bear heart.




A friend once told me that establishing and nurturing the roots is much easier than allowing their wings to fly.  After this past week, I believe that is true.



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Sunday, September 23, 2012

Down Syndrome and Friendship: Part 1



Growing up, I had red curly hair.  I was exceptionally skinny (yes, I know  What happened?).  I also developed boobs before all of my female classmates.  I was teased.  By boys and by girls.  And I cried. Privately.  Did I mentioned that this was in elementary school?  Those few close friends that I did have in school are still my friends.  In fact, one I speak with almost daily.

Children fear what they do not know or what they do not understand.  Many times that fear is manifested by making fun of the person who is different.

My daughter is different.  She has slanted eyes and a large gap between her first and second toes.  She screams rather than make words.  She is prone to frequent spitting up due to reflux.  She always has something in her mouth whether it be a blankie, a chewy, or a shoe.  She believes that crayons are their own food group.  She uses her hands to communicate.  If a child is crying, she immediately starts signing "sorry" and starts to cry too.  My daughter has Down syndrome, sensory processing disorder, and a tentative diagnosis of attention deficit hyperactivity disorder.  This makes her different, special.




I believe that people are innately good.  As parents, it is our duty to educate our children and to instill them with good, decent morals and values.  Yes, this does indeed go back to the "treat people the way you want to be treated" rule and it starts when our children are infants.  You lead by example and your children will follow.


Friendships and sharing start young!


When Ellie was 3 months-old, I took over as the playgroup leader for the 2009 babies of the North Austin Mom's Club.  I was still a brand new member and a brand new mom making my way through tumultuous hormones and the grieving process of having a child with a disability.  Part of my role as the playgroup leader was to meet the potential new members and inform them of where the playgroup was meeting that week.  I would often say "I am the one with the curly hair and glasses.  My daughter has straight blond hair and blue eyes."  I never once said "Oh my daughter is the one with Down syndrome" even though it would have made us much easier to find in a busy park or playscape.








Yes, I purposefully hid the fact that my daughter sported an extra chromosome.   I didn't want my daughter judged sight-unseen.  I wanted them to show up at playgroup and see that my daughter was/is "just like everyone else" and should be accepted and treated as such.  Also, a part of me didn't want them to run away out of fear due to preconceived notions.  If I didn't make a big deal out of her designer genes, then perhaps they wouldn't make a big deal either.





It never mattered.  From our first ever playdate (Ellie was two weeks old) and as our group steadily grew, these woman fully embraced Ellie as a member of their "village".  They cheered when Ellie learned to sit up, to crawl, and to walk even though their own children accomplished those milestones months before her.  Their children play along side of Ellie.  Some of the kiddos try to interpret Ellie's signs.  "Ellie Bear wants more crackers!" We attend each others' birthday parties.  Many have participated in past Buddy Walks.  We are accepted.  She is accepted.  She is loved.





The children are now older enough that they are starting to notice that Ellie has some quirks.  The children may be out at the mall and see an item the resembles Ellie's chewy tube and say "Oh Ellie Bear has one of those!".  Or they may ask "Mommy, why did Ellie Bear put my shoes in her mouth?" or "Why is Ellie Bear still in a diaper?"  Honest, curious questions that only require honest, simple answers.  Their mothers, my friends, do not make a big deal out of it and provide simple answers.  Ellie's playgroup buddies continue to play with her and embrace her because their parents have demonstrated acceptance.  They have demonstrated, through their actions that Ellie is just another little girl who wants to play.




I know that it may not always be this way.  I know that as children grow older and the opinions of peers hold greater importance, things may change.  However, for now, I am fostering these early friendships.  I am hoping that as our children continue to grow, they will take these life lessons with them and continue to recognize that all of us are "more alike that different".


Photo: Music Therapy Services of Austin




*It has taken me well over a month to write this post as a few events have transpired and my feelings are a bit conflicting.  Therefore, this has become a multi-part series.*
**I am forever thankful to my friends of the NAMC.  They have been with me through some dark times and with many celebrations.  If you are in or near Austin, please visit their website and consider joining in all the fun!  This post is not sponsored by NAMC and I do not receive any membership discounts as a result of this post.*
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Wednesday, September 19, 2012

Preparing to Enter Preschool Special Education: The IEP Meeting and Ellie's first day

This is the bus Ellie rode to school today!

Over the past few weeks I have chronicled our experiences leading up to the big IEP meeting.  Those previous posts can be read here and here.  I have since learned through both Facebook and blogging comments that every parent looking into the special education system should receive the results of their child's assessment by the school district in writing.  However, many of you have reported receiving no results until the actual IEP meeting or you have received a phone call prior to the IEP meeting.  I suppose a phone call is better than silence, but there is something to be said about seeing it in black and white.  Please know that it is your right as the parent to receive your child's assessment results prior to sitting down at the IEP meeting.  This allows you to 1. digest the labels and percentages that are assigned to your child's development and 2. prepare some goals that you would like to see addressed throughout your child's school year.  Andrew and I were very happy with our school district in that they consistently emailed us updated information about the assessment as well as their recommended goals that they would liked to be considered by the IEP committee.

Disclaimer: remember that this is our first experience with the school district and we are truly novices when it comes to navigating the special education school system.  We are still learning the system. Every state is different in its rules and regulations. Advice and sharing your experiences are always appreciated in the comments section!


I really don't know about this school nonsense.

Last Wednesday, Andrew and I attended the IEP meeting at the local elementary school.  Present during this meeting was our ECI therapist (J), the school's speech therapist, the school's special education teacher, as well as the diagnostician/pediatric psychologist that evaluated Ellie.  It should be noted that two of the people present never met Ellie.  These two people are blindly creating a school year plan for a child that they never met.  They are solely dependent upon the documented observations and recommended goals by those who carefully assessed Ellie a few weeks ago.  They also reviewed our private therapy notes (Applied Behavior Analysis Therapy [ABA] and speech therapy [ST]) as well as a detailed visit note from Ellie's developmental pediatrician (Dr. F).  This was a rather scary concept for me--People deciding the educational fate of my little soon-to-be 3 year-old by looking at pieces of paper.  More on that later!

Here are a few tips that I received from, quite honestly, the internet and from fellow colleagues who have traveled this windy path before us:

1. Dress up.  This means no shorts or hoochie-mama tops.  I wanted to be perceived as a serious member of the IEP team and as such wore nice pants, a nice shirt, and make-up.  Andrew wore a polo shirt rather than his BBQ/Mexican food T-shirt "uniform".  That is what us parents are--members of a team.

It can feel this way on both ends.

2. Treat the members of the team with respect.  They work very hard.  They are highly trained professionals and they truly do want what is best for your child.  They are not out to get you.  I know many people in the special education field.  Ellie's babysitter is currently in school for Spec Ed and her passion is contagious.  They chose this career path because they truly believe our children can do wonderful things and because they want them to succeed.  I do know that people burn out and become jaded by the system, but I honestly believe all involved want our children to succeed.  We may not agree with their approach or their recommendations and that is okay, but we still owe respect.  It isn't always the parents who are afraid of the IEP meetings.  No one wants a battle.


3. That being said, YOU know your child best.  How she best learns and what her true strengths and weaknesses are.  They only captured a snapshot of your child through the assessment or through a piece of paper.  If you do not agree with something or you feel like they did not get a clear understanding of your child, be sure explain, educate, and give examples.


4. Bring photographs of your child.  It is helpful to everyone to place a face with a name.  I brought in pictures of Ellie doing things that she loves--working on her shape sorter, feeding herself with a spoon (very messy!), and playing with her baby doll.  Plus, I brought in a picture of Ellie looking all sweet and innocent.  Remember, she hyperactive, sassy, and sensory driven.  It all looks scary on paper--"this child is TROUBLE!" so the innocent pic helped in my humble opinion.  (Remember, I mentioned that two of the people present in our IEP meeting never laid eyes on my little angel.)

I brought this photograph with me because Ellie looks lovely and sweet.
I contemplated on bringing this photo collage because it demonstrates Ellie's amazing spoon feeding skills.  However, it also screams "I like to torment my caregivers with my naughty antics".


5. Bring in all reports concerning your child--the reports from the school district's assessments, summaries from individual therapists, and doctor's notes (i.e. Dr. F from developmental peds).  Even though you supply these notes for the assessment, it cannot be assumed that the people actually read them.  We were fortunate because there were direct quotations from Dr. F in Ellie's school district assessment.  That being said, the speech therapist had no idea that Ellie's speech therapist was using the Kaufman Method.  When I brought it up, she made the note to continue using this method with Ellie during her speech sessions at school.

6. Bring tons of paper for taking notes and extra pens.  Wouldn't you know that during a very important meeting your pen decides to boycott writing.

7. For Ellie's teacher, I supplied a list of Ellie's signs as well as an "All About Me" sheet.
The above ended up being very important.  You see, Ellie knows over 70 signs.  Okay, they are VERY  gross approximations and for many of the signs, only Andrew and I would understand them.  However, during the assessment, Ellie only signed 3 words.  This led the assessment team to score Ellie lower on the communication scale.  Since they now know that Ellie does communication primarily with signs, they are going to work on pairing two signs together as well as words/sounds with signs.


Oh my.  I hope Ms. K is ready for this.


8. COOKIES!  I firmly believe that IEPs are stressful for everyone involved.  Not just the parents.  Our IEP meeting took place in the afternoon.  This was after the teacher and speech therapist had a full morning of teaching 3-5 year-olds and therapy.  Everyone could use some yummy, deletable treats, aka a sugar-fix.

9. This is perhaps what I had the hardest time wrapping my brain around.  Ellie is developmentally behind in fine motor, communication, social skills, cognitive skills, and self help.  Even with all of her climbing and monkey business, she is behind in gross motor skills in that she cannot jump or alternate feet on the stairs, etc.  This led me to believe that she would qualify for ST, OT, and PT.  However, the school focuses on academia.  This means that the goals are based on areas that she cannot function well in for school, rather than development.  Can she walk?  Yes.  Therefore she does not need PT.  Can she hold a writing utensil?  Yes, albeit not correctly and not without eating it.  Then she does not receive OT.  Their goals are all about preparing Ellie to be successful in school.

10. Perhaps most importantly, you do have 10 days to sign your IEP.  Actually, you do not have to sign it at all if you do not agree with it.  However, note that your child will not be able to start school until an active IEP is in place.

11. See above and STRONGLY consider not signing the IEP the day of your meeting.  The IEP is a living and breathing document.  It should not be typed up ahead of time because, as I have mentioned above, we are a team formulating goals that best suit each child individually.  The diagnostician typed up Ellie's IEP during the meeting.  Yes, there was a vague outline already available prior to the meeting (this is what I received via email a few days before the meeting), but changes and modifications were made during the meeting.  These changes were typed into the computer.  However, upon the end of the meeting, Andrew and I were strongly encouraged to agree without seeing a written print-out of Ellie's IEP.  We refused to sign until we could see the IEP in black and white.

12. Review a written copy of the IEP before signing.  I waited 1.5 days before being able to review the IEP.  I did find a few errors.  They were minor, BUT these are my daughter's goals and I want them enforced.  If the goals are not listed correctly in the IEP, I have no grounds to say "I notice that Miss xxx is not working on xyz with Ellie."  If it is not in the IEP, it does not have to be worked on.  Ellie's IEP has since then been corrected within the system and I have signed it.  The Ellie Bear starts school on Monday bright and early.  I will cry.  Her backpack is bigger than her!





Here are a few examples of Ellie's goals.  Many focus on communication as well as increasing Ellie's attention span.

Ellie will imitate 10 one-word labels or word approximations during 3 out of 4 speech therapy sessions.

Ellie will follow basic one-step commands such as "come, stand, sit, no, stop" in the classroom therapy settings during 3 our of 4 days.

Ellie will attend to and participate in large group activities (i.e. circle time, story time) for 5 minutes with 3 or less prompts, 3 out of 4 opportunities

Ellie will listen to a book being read for 3 minutes in a 1-1 setting with 3 or less prompts, 3 out of 4 opportunities.

Ellie will imitate drawing horizontal and vertical lines, and circles with 2 or less prompts, 3 out of 4 opportunities.

During this meeting, I discovered that the speech therapist is trained in both PROMPT and in the Kaufman Method  This is rather exciting because I had been looking for a therapist (and failed to find one) who is trained in the PROMPT method.  Also, in using the Kaufman Method, the school's therapist will continue the type of approach that Ellie's private therapist is using.  I am very hopeful that great things lie ahead this school year!


Ellie's thoughts on riding the bus.



Finally, I would like to share with you other reader's comments and recommendations for attending an IEP meeting.  Some of these parents have walked this path for many years and some of these parents work within the special education system.  Please feel free to add your own recommendations in the comments section.

J: Make sure you take lots of notes, ask lots of questions, and research everything you do not understand before agreeing to any terms.  My biggest mistake looking back on all IEPs I have attended both for my children and my students is not taking enough notes and then following up on them to make sure everything was done that had been discussed.

J: not necessarily an IEP suggestion, but a great tool is to create a people first pamphlet kind of like a brochure that has pictures, and pertinent information about Ellie to hand out to each of her team, plus other school people like librarian, office, cafeteria, playground etc.

T: Make a list of what YOU need to talk about. Questions and expectations. Star the things you are willing to fight for...bullet the things that would make you happy...leave the rest "gravy"...You can also TABLE the meeting, or call it off before it is ended, and decline to sign, if you feel like you are being bullied, and you want either your husband, a friend, or a legal advocate to join you...Or if you even just want to research and revisit the IEP, AND, it is not stone, even if you sign, you can call an IEP meeting next week, if you want

S: I would bring a little write up about Ellie - what her strengths are; her areas that you would like to see grow this next year. You may even bring a little write up with a few pictures on it for them to remember her by:)

J: My biggest suggestion is more for her future since she has not been in the system long - do not let them reduce or remove services (such as OT, PT, speech, etc) unless you completely agree. The school pulled OT for Z in 3rd grade & I never should have allowed it. She needs those services - they are so vital!

K: Ignore the numbers, they are there to teach your girl and care about her.

A: Bring some cookies to the IEP meeting; let the school personnel guide the meeting, but ensure that you voice any and all concerns; if there is an accommodation that you believe would be beneficial and they say "We can't do that," ask them to put it in writing; relax; and finally, do not feel pressured to sign anything except the attendance papers tomorrow. To reiterate that final piece of advice, *do not* sign off on the IEP document at the meeting. (They will most likely have already developed a "draft IEP," which is frowned upon but done anyway; thus, that document will not truly be a collaborative document including your insight and input, which is the purpose of the meeting.)



I apologize for the long post.  As I mentioned before, this is our experience thus far as it relates to Ellie. This is her first IEP.  I imagine that the process will become more complicated as she gets older and subject matter such as writing and math come into play.  

Even though it all went well, I still felt like this:




Cue: Crying Mama Bear



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Monday, September 17, 2012

12 Kids Plus Cupcakes equals The Wild Zoo Birthday



This past weekend Andrew and I threw one ginormous party for the Princess Bear.  There were supposed to be 17 children between 1-5 years of age attending, plus their parents.  That would be SEVENTEEN children and Ellie.  (although in the end it was 12 children due to illness and school functions).

Yes, it was entirely my fault.

No, I was not insane.  Well, perhaps, temporarily.

Yes, I had big plans of hiding out at our neighbor's house until the party was over.




Birthdays are a time for family.  A time for friends.  A time to feed young children tons of sugar-laden cupcakes and to allow them to run wild while the adults sip on beer and coffee.  A time to celebrate life.





Ellie turned 3 years-old this past weekend and we have never thrown a party for the Bear.  Yes, we had cupcakes at age 1 and age 2.  I hosted a mini playgroup last year, but never a party.  Never anything were there was presents and decorations and party favors and dads.  Never anything that required planning.




Then, tragedy and grief battered our tight-knit Down syndrome community.  A little boy around Ellie's age passed away.  Two other young boys from a cardiac defects.  A few of Ellie's friends with Ds became very sick with life threatening illnesses.  I also witnessed amazing miracles.  It was a huge wake up call. Our children are fragile, but they are fighters.  Life is a gift and as such, we must celebrate it to its fullest.

Hence, the rather large birthday party.  If we were going to celebrate, we were going to do it Texas-style.






Of course it was at our house.  We had the backyard all spruced up.  You know, with grass.   That green stuff that grows from the dirt in the ground.  This is the first year we have had grass (okay, we had sod installed) since I lived here. The sandbox was ready.  The mini playscape was ready.

It rained.  There was mud.

Eh, what is 12 kids plus 20 or so adults crammed into a kitchen and living room?

A GIANT playdate!










Ellie Bear loves Signing Time!.  Loves it, but you know that there are positively no decorations or party-theme Signing Time! products?  I decided to go with theme Zoo-Train, an episode from Signing Time!  Lions and Tigers and Bears and a train!  Whoo hoo hoo hoo.  Choo choo choo chooo.  Here it comes, all aboard.  Let's watch the Zoo Train!




Confession time: yes, I did coordinate everything to Ellie's dress.
At the beginning of Summer, my mother-in-law bought Ellie this fabulous dress with bright pink, green, and blue flowers.  Yes, the dress in all of the pictures.  I fell in love and decided that those colors must be incorporated into her birthday party.  Hence the cupcakes, the little banners, and her make-shift zoo train being bright pink, green, and blue.  This was a relatively cheap party--I used mostly left over fabric for the little banners, but bought a few quilters squares and bias tape at Hancock Fabrics.  Forty-eight feet of banner!  Do you know how many craft stores I had to go to to get enough Lime Green and Berry Sorbet bias tape?




I really want to scrapbook.  I really do but I never seem to get around to it.  Therefore I had tons of fancy, colorful paper piled up in my little sewing corners.  These pieces of paper were used to make each kiddo a placemat.  I went to www.babysignlanguage.com and printed out the flashcards (at 75% size) for the various animals.  Sadly, I only have a black and white printer so the placemats were were rather boring.  I used a mini laminator that I bought at Costco a while back for $30.  It even came with several 8x10 plastic sleeves. This is how I tied in the Signing Time! Zoo Train.  It was such a treat to watch the kids at the party (and their parents) try to sign the various animals.  I felt like for a moment, they were in Ellie's world of communication!




Ah, the cupcakes.  Some of you know this already.  When I had the final headcount, I realized that if each person wanted a cupcake, I would need to make 36 cupcakes.  What if people wanted extras?  I made 48 cupcakes.  Andrew came home after an afternoon of my baking and just couldn't help himself.  By that evening, I had 47 cupcakes to make icing for and decorate.  My baking is from scratch, but it is not pretty.  I cannot make those really exciting elaborate cakes that look like Rapunzel (Tangled) is in a tower or a cake that is shaped like a train.  I just do not have that talent.  Sigh.  I did however make sure that there was as much sugar and food dye as possible in these little balls of sweetness.





I believe the party went well.  No one was injured.  There were no ambulances or fire trucks called to our address.  The house is still standing and many of the children didn't want to leave.  Ellie was very overwhelmed though.  She does really well with one to two other children, but more than that can be a bit much for her.  Ellie spent a huge portion of the party, when not stealing other children's pink cupcakes, playing quietly with her toys in the corner.  Once her buddy Jack arrived, she was happy and up to her usual antics.


Sorry this pic is so dark.



My floors are sticky and covered with icing.  I still have 3 packages of hot dogs and an entire bag of animal crackers left.  Plus there are a few rhino-shaped watermelon slices hanging out in the fridge, but my girl had a great time and that is what counts. Oh and we still have 1 dozen cupcakes left.  Any takers?





Cupcakes from the past:






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