Tuesday, May 29, 2012

(Silver) Spoon Fed

Ladies and gentleman.  At nearly 5 years old, my dear Sophia has successfully, independently, and voluntarily spoon fed herself for the first time.  (The crowd goes wild)

My daughter currently eats only a handful of foods, refusing all others.  She has not used a utensil on her own, so we feed her, except for finger foods.  To supplement her diet she drinks apple/vegetable juice and Pediasure.  We hope to finally get to the bottom of her refusal to eat at the Feeding and Swallowing Center at the children's hospital (we're on the 2-3 month waiting list).

Is her refusal to eat a learned behavior?  Is it due to her laryngomalacia and tracheomalacia (floppy airways not uncommon to young children with Down syndrome who often have low muscle tone throughout their bodies) and a history of choking on the smallest bites which perhaps became a fear?  Is it sensory (taste and/or texture)?  She detests getting her hands messy, including food, and won't eat a cracker or chip if it's broken and as such feels different in her mouth.

I can't remember why I began researching adaptive utensils.  None of our team members had suggested this.  In fact, it may have been that I saw an ad on the sidebar of fb which showed Sassy brand spoons and forks with a left bend for right handed toddlers.  After searching unsuccessfully for a left handed version (Sophie is a south paw), I gave up and called Sassy directly.  The told me that they did not make a version for left handed children as there wasn't a market for it, unless they made them for specialty stores, which they had no plans to do.  They reminded me of a now discontinued spoon that had a curved handle which curved neither left or right, but upwards.  We have one and Sophie isn't interested.

Feeling like I was onto something and undeterred, I kept looking until I found boon benders!

These utensils can be bent left or right, to varying degrees!  Yippee!  While looking at them I found this:

This bowl has a strong suction cup on the bottom to prevent it from being chucked across the room, not that my Princess has EVER done that.  It has the extra rubbery piece to catch the drips as a youngster learns to self feed.  They came in a variety of colors, but we chose kiwi/grape.

If you have a child(ren) who eat most, or even some of the food given to them and pick up the skill of using utensils without much trouble, you may not be aware of all that goes into self feeding.  Aside from being willing to eat the offered food, using a utensil independently requires control of not just the arm and elbow, but wrist coordination as well.  It requires an understanding of cause and effect.  You have to keep the utensil level so as not to lose the food on the way up.  Then you have to place it far enough (but not too far) in the mouth (straight), remember and have the patience to close your lips and have your tongue in the proper position, pull the utensil out using your lips to do some of the work, chew and swallow.  (Our OT and ST friends may have other steps that I'm missing).

I was thrilled today when the latest doo-dads arrived.  I served up Sophie's favorite strawberry-apple sauce, secured the bowl to the counter top, put on a cartoon in the background, and gave her the spoon. 

She ate.  Willingly.  Happily.  Independently.  Proudly. 

I cheered.  We ALL cheered as I called the whole family into the kitchen for a pep rally.  I had tears in my eyes and squeezed Mark's arm while jumping up and down and possibly alarming the neighbors.  She smiled.  She exclaimed, "I did it!" over and over.  She ate with a spoon, by herself.

We will need to work on her grip and other components mentioned above, but not tonight.  Tonight she enjoyed the freedom of being a big girl who can feed herself with a spoon without assistance.  To my big, beautiful, smart girl, we're so happy for you!

Wednesday, May 23, 2012

Happiness and Quality of Life Assessment

Dear Special Needs Community and all Dignity Revolutionaries,

I am seeking measurable goals and outcomes for an assessment on happiness & quality of life for my daughter with an intellectual difference to give to her new IEP team as she is transitioning from preschool to kindergarten.  I'm completely serious.  I just read Sophie's reevaluation report and it misses so much of who she is.  Please send me your ideas.  I will write this report up for her IEP meeting on May 31st, so be quick!  EDITED, So after a night's sleep I may not actually give this to the team, at least at the first meeting.  I would still like to create the report, so keep the ideas coming.

For those not "in the know," IEPs are Individual Education Plans created by a team including parents, therapists, special education and general education teachers, etc.  They are written after a series of evaluations are done on the student. The IEP is a legally binding document describing how a student with differences/disabilities will be educated including supplementary aides and services.

Many of the evaluations done on our children include language similar to my satirical report that you will see below. 

Examples of what I am looking for are as follows:

Report complied by: Sophie's expert Momologist

HAPPY-IQ, The score can range from 55 - 150.  A score of 100 is considered average at the 50th percentile.
According to the HAPPY-IQ, Sophie's happiness and quality of life falls in the Off the Charts range, which places her in the gazillionth percentile.
Scores for the subtests are represented as standard scores, which have an average of 100 and a standard deviation of 15. Scores between 85-115 are considered average.
Sophia's scores are as follows:
Subtest------Standard Score------Range
Empathy               110                High
Patience skills      100                 Average
Joy                        150                Very High
Forgiveness skills 150                Very High
Stubbornness        100                Average
Tolerance ability  150                Very High
Beauty                1000                Off the Charts

Measurable Goals and Objectives for Life:
1. When tickled, Sophie will laugh 10 out of 10 times, over three weekly probes. 
2. When observing a person who is upset, Sophie will notice and comfort them 9 out of 10 times, over monthly probes.
3 Sophie will forgive people who upset her 9 out of 10 times, over infinite probes. 
4  Sophie will show pleasure at seeing a friend, loved one, or familiar setting 10 out of 10 times, over weekly probes.
5  When Sophie is excited, she will exclaim with joy 10 out of 10 times, 5,000 times each day.
6  When the bar is set high, Sophie will rise to the challenge to the best of HER ability in HER own time 10 out of 10 times for, for the rest of her life.
7. When Sophie says "No" she will express that she means"No" without any doubt to the person on the receiving end, 12 out of 10 times, daily.
8. Despite limited verbal ability, Sophie will make her needs known 9 out of 10 times, over daily probes.
9. When faced with physical and developmental challenges, Sophie will show courage, perseverance, and strength, beyond what most people would be capable of, every day.
10. Anyone who has the honor of truly getting to know Sophie will be a better person for it, 100% of the time, over her lifetime.

Come on y'all.  You know you have more ideas.  Bring it on!!!

Tuesday, May 22, 2012

Happy Dance

Helena used the toilet for the first time today!  We had not even started potty training but instead took our cues from her.  Of course we have been reading children's stories and talking about it, but that's all so far.  When she said she had to use the potty, we immediately took her to the big toilet.  We didn't use a little potty chair, or implement a 'potty train your kid in one day' program, or chart with stickers.

When I think about the year it took us to get Alexander to use the toilet and the millions of tactics we tried, I have to shake my head.

I know we have a long way to go and we still may end up with charts or something, but dang, what a momentous start and what a great model for Sophie.  I had planned to try and potty train them together.  I know it may be a long time for Sophie, but one should not underestimate the motivation of modeling siblings and peers.

Come on and do the Potty Dance!

Friday, May 18, 2012

Sophie's Vision Statement

In two weeks we will have Sophie's Individual Education Plan (IEP) meeting with her new team as she is transitioning from preschool to kindergarten.  She will be attending the same neighborhood elementary school as her big brother and will be riding the same bus to school.  Sophie will be fully included in a typical kindergarten class with her supports and services pushed into the classroom as much as possible.

Oh yes she will.

If you know me at all, you know that this isn't a question of if, but how.  I believe in inclusion for our children with disabilities because it works.  It not only benefits the student with an IEP, but it benefits their typically developing peers as well.  The laws about educating students with IEPs in their Least Restrictive Environment (LRE) and with a Free and Appropriate Public Education (FAPE) support an inclusive education in the child's neighborhood school. 

Sadly, inclusion doesn't come easily.  It's often a battle to make it happen.  When it does happen, in order to be successful and not just dumping a kid in a class and calling it a day, the team must work very hard and get creative.  It has to be a truly collaborative team effort with the parents working along side the staff. True inclusion is when the student has adequate supports and services provided to help them achieve their maximum potential.  Education without these supports is not inclusion and is harmful to the student.  It looks different for every child as their needs are varied.  Inclusion is not one size fits all and yes it can scare the Hell out of me.  ~end soap box rant~

A part of my preparation for the meeting is updating Sophie's Vision Statement.  This is designed to give her team members an introduction to Sophie and a clear grasp on our expectations for how her academic life will look.  I dropped off copies for her team to review this afternoon.  I omitted the name of her school in the blog version for privacy.  Have a look if you like. 

click to enlarge.  photography by Bryan Karl Lathrop, www.BKLPHOTO.com

Thursday, May 10, 2012

No Place Like Home

There really is no place like home.  No place like our back yard that our kids call their park.  A park that their daddy lovingly built for them last year.

Helena is 2 going on 16.  She thinks she's in charge.  She just might be.  She started wearing her lady bug costume yesterday.  We can't get it off of her.
I LOVE this picture.  I may have a bias, but this girl is gorgeous.

Happy Spring y'all!

Wednesday, May 9, 2012