Friday, July 21, 2006

Mixed Messages

Be careful whom you associate with.It is human to imitate the habits
of those with whom we interact...One of the best ways to elevateyour character is to find worthyrole models to emulate. ~Epictetus

This is the quote from a recent article in 'Disability is Natural' titled, 'Mixed Messages'.

I love this quote, because all along, from the moment I had the first premonition that Emma Sage would be born with Down syndrome till today, I knew that Disability was natural and that there is a normalcy of difference.

We are all different, but we are like the pieces of a huge puzzle.....we all fit in somewhere.

I opted out of Early Intervention, based on a few points, but the main point for me was that I did not want to subject my daughter to a system that was based on identifying her differences and trying to 'fix' them.

We then delayed preschool, trying to enroll her in the little local 'Happy Face Nursery' school, which said that would gladly take her, but that we needed to provide her with an aide [which she clearly does not need her own aide] but that meant that we had to go through the local public school, which refused to provide the aide because at that point they had a 'self-contained' preschool....again exactly what we did not want for our daughter. We did not want her isolated out and made to feel that she was so different that the only place she fit in was with others who were being isolated away from the general population.

The following year, the school offered a fully inclusive preschool program, so we sent Emma Sage. She adored school....she was happy, she had friends, she delighted in the routine of school.

Then we were told because she is five, she needed to be isolated again, to be judged, to have to go through battery of tests, just because she was born with an extra chromosome...just to attend school.

Typical five year olds just bring their birth certificate and required paperwork and they are welcomed and educated. If you are born with a genetic deviation, you must undergo a vast pile of tests...tests that label you, belittle you, isolate you....for what, so you can then be educated?

Rick was the one that said "No" we will not subject our daughter to that. We refused to consent to the IQ test. We did consent to any test that would help identify Emma Sage's strengths and weaknesses, to better decide her learning style, but as for a test that is basically a mute point and one that we believe will only be used negatively against our daughter, we said "NO" and then were slapped with a court appearance.

The school was going to force us to do something we firmly did not want to happen to our daughter. Rick's position was, "When every five year old is required to take an IQ test to enter Kindergarten to be educated, then we will consent"....and you know that is NOT going to happen.

So we pulled Emma Sage out of school. A school that is truly inclusive these days, a school filled with students that are compassionate and embraced my daughter with open arms. A school who has a principal who has fought very hard for inclusion and teachers who team up to co-teach to make our school truly an amazing place. So it is very sad that we were forced to either 'submit' or 'leave'. We don't have the time or money to fight sadly, Emma Sage misses out on all the opportunities that I believe she would have loved at Valley View School.....and SADLY, the students and staff miss out on the essence of Emma Sage.

But there is a very positive point to this story. Emma Sage is going to be home schooled and will be completely involved in our local Home Schooling Group [which is large and amazing] and will participate in community activities and sports, so she will be able to maintain her friendships with her friends from preschool and will continue to make new friends as the years roll forward.

She will not be sent 'Mixed Message's by being pulled out of class [which by-the-way, we never have asked for ONE SERVICE from our school district,,,we have only asked for our daughter to be educated, so I don't understand why we were forced to submit our daughter to testing, when we haven't asked for one single service].....she will not be sent 'Mixed Messages' and for that we are so thankful this happened now.

We have a blog set-up to record our educational journey. You can find it here.


Beanie Baby said...

Oh my god--another blog. Plus homeschooling. How do you keep up with it all?

I'm impressed with your bravery. It must have been hard to stand up to the school system. And you're right, what a ridiculous rule.

Michelle said...

I've been wondering what made you decide to homeschool when you described Emma Sage as enjoying I know!

That is too bad they had to force you to do this, but I don't blame you one bit. I can't believe they wanted her to have an IQ test...and Rick is right - when every other kindergarten has to take this test then it will be ok, until that happens there is no reason why she shouldn't be allowed to go to school w/out that test and just learn like the rest of the students.

I have often thought about opting out of ECI (obviously too late now as she's transitioning next month!) but I felt like "darned if you do, darned if you don't" - I think I would have always wondered if I did a disservice by not participating when it is made to feel like this is what you "should" do...I think Kayla actually would have been fine w/out ECI - I think she still would have learned and done all the things she is doing now...I attribute that to her own personality and determination and not ECI. Well, sorry this comment got so long!

Kari said...

Now it all makes sense? I was wondering what helped you with your decision. I agree with your thoughts and feelings on this. I will not allow for Tristan to be treated this way either. As it stands in my area he does not REQUIRE any testing (yet anyway) He will go to EI for pre-school this year and next year he will have inclusion in a differant place. They will take him and see how he does on his own and have said it is rare for a child with DS to REQUIRE an aide for pre-school. The only testing that has even been mentioned was from his Educator and she is coming over to discuss any concerns I may have and to figure out what Tristans strengths and weakknesses are so they can make it IEP to accomodate his needs. When he starts kindergarten he will go on his own and they will see how he does and if he has difficulty then he can have an aide if needed. This is how it was all explained to me. No mention of IQ testing or mandatory Aides so we shall see. I will home school as well if Tristan is sent "mixed messages" Sorry this got long but it is something i'm kinda going back and forth with in my head as he will be starting pre`school 5 1/2 weeks and I'm not feeling enthusiastic about it. Emma Sage is lucky to have such a wonderful Mommy for her very own Educator. You'll do a fabulous job as you always have. :)

Anonymous said...


You are a wonderful writer. This piece could easily be expanded into a Gifts submission.

I certainly understand your thoughts about EI, and I have already decided that I will not allow the school district to require Miss E to undergo such testing and such.

I believe that while our children may need a bit of assistance--there is no reason at all to initially exclude them--or to call out their differences, prior to seeing what they actually are capable of in school.

I have been struggling since the school year ended about whether or not I will continue to use EI services this year. Miss E only qualifies for a teacher two hours a week.

She is always late and as a result leaves early. I am frustrated easily when someone makes and appointment for 1:30, doesn't show up until 2:45 then needs to leave at 3:15. Our whole afternoon is disrupted by events such as these.

I may very likely opt out this fall.

I feel awful that you have had to battle the district to stand on solid ground about what your family wants for ES. Yet, at the same time, I am so proud of you for not giving into the conventional pressures of the educational system.



Shelley said...

Yes the whole testing question is rather scary - still ahead of Hannah and I I am afraid. I do applaud your strength in going against the 'standard' in protecting Emma - it can be very hard to do so. I have a wonderful EI team but just last week an issue arose of getting Kit to participate more in group activities - this has been a hard issue for us as it isn't his 'fault' Han needs EI and at 21 months that is the only reason someone is going to try and force him to sit still for 'group time' and to learn 'turn taking' in a formal setting - we don't want to see his natural childhood spirit crushed by convention so early! Hannah bear however really does enjoy such things - they give her increased opportunities for interaction and as such I rarely have to restrain her - sometimes she does want to move on to gross motor play more quickly! The home schooling sounds fun - I'll make sure I check out that blog.

Sue said...

Rick is right -- it is a ridiculous rule and an exclusive one that is applied to some students, but not all students. I applaud you for standing firm in your advocacy of Emma Sage's rights in this matter. You are awesome parents.

snowblog said...

Hey, TM! I wanted to encourage you on this journey! I think that it is fabulous what you are doing for Emma Sage. If you need any help with curriculum, please let me know and maybe I can help with my position at my school district. Hugs!