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:

REEVALUATION REPORT
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!!!

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!

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


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!

Helena

Doctor Day

This morning I took all three kids to their new pediatric dentist (by myself). I'm thrilled to say that they all did really well. Alexander went first to show his sisters how it's done. He got an x-ray and we learned that he was born missing a couple permanent teeth. Oops. Coupled with the spacing of his teeth and his overbite, he's looking at braces, possibly as soon as a year or two from now.

Helena A.K.A. Schmoogie went second. She wore sunglasses provided by the dentist and had no problem getting her exam, cleaning and fluoride treatment. We need to do a better job brushing her back teeth, she's very healthy, but needs to lose the pacifier.

Soph went last and was very cooperative. She also got an exam, cleaning, and fluoride treatment. She only bit down on the brush once, which is pretty good considering that she tends to chew her toothbrushes. We are very impressed with our pediatric dentist and techs.

3 kids, 0 cavities. Afterwards we took Alexander back to school and the girls and I headed to their pediatrician's office. I'm not a parent who takes the kids to the doctor's office for a cold or flu. From October - April one of us in this family usually has a virus of some sort, though Sophie is much more prone to respiratory illness then the rest of us. It's just been too long with this last round of coughing and snot for my comfort. Also, as Mark and I prepare to head to Switzerland and are leaving the kids in the care of the great Grandma Paula, I decided it was time for a medical opinion.

So, both girls are suspected to have inherited my seasonal allergies, oops, and both girls have a sinus infection. Helena also has an ear infection. We thought it would be a good idea to have Alexander looked at since he has a similar cough, though it seemed to be getting better.

The girls and I spent the rest of the afternoon running errands and when Alexander got home from school, we headed back to the doctor. He too is suspected to have inherited my allergies, has fluid in one ear, and a sinus infection.

Great.

We headed to the pharmacy and waited an hour to NOT get the prescriptions filled. The girls have their meds, but not Alexander. I'm not a happy camper. Thankfully, I have wine and a fabulous trip coming up very soon to assuage my nerves. The great Grandma Paula will arrive tomorrow and it will be all better. Thank G-d for access to good health care.

Celebrate World Down Syndrome Day

Today is the 7th anniversary of World Down Syndrome Day and it is the first year that it is officially recognized by the United Nations. Across the globe family and friends are celebrating our loved ones who sport designer genes. DS or Trisomy 21 means that there are 3 chromosomes where typically there are 2 on the 21st set. Hence, 3-21 or T-21. March 21st has been chosen as the day to celebrate Down syndrome for this reason.

This is Sophie's karyotype, or map of her chromosomes. Look closely to see the trisomy of #21.

The timing of this celebration is especially important to us as it marks the anniversary that our family learned that the child I was carrying had Down syndrome. We were shocked and scared but we chose to keep our precious gift. On that day we decided to name her Sophia, which is Greek for wisdom.

A big part of my job as her advocate is to educate. Are you aware that 90% or higher of prenatally diagnosed babies with Down syndrome are aborted? In some places like the former Soviet Union, children born with disabilities are almost always refused at the hospital and are sent to live out a miserable and often short existence in an institution. Organizations like Reece's Rainbow and Russian Orphan Opportunity Fund (ROOF) work hard to change the fate of these discarded children while Denmark boasts that they are working towards a Down syndrome free, perfect society.

Today, somewhere a pregnant woman is being given the news that her child has Down syndrome. Many will pressure her towards termination. Through connecting to families like ours, she can learn the whole picture. She can be given hope that she can do this and that she will be immediately accepted by the greatest extended family, the special needs community.

Raising Sophia has been an honor and a privilege. She has been our teacher and her lessons have been of unconditional love, acceptance, patience, respect, kindness, perseverance, and joy. By sharing our family with the world, it is our life's mission to educate others that disability does not mean the end of the world. People with special needs belong in our community just as much as everyone else and they have so much to offer if we would just open our hearts and minds. We chose Sophie and we have never looked back.

Please watch this absolutely beautiful video created by my sweet friend Diane. She stands strong in her convictions and I respect her for it.