Tuesday, April 1, 2014

Tired of Fighting

I do not yet know if I will publish. . . . I suppose if you are reading this, then yes, I got brave and hit the button.

We had an unfortunate, but not unsurprising, experience with a day-care that offers a summer preschool program.  This is a private place that has centers throughout Texas.  It is not affiliated with the public school system.  Andrew and I both believe that it is important for Ellie to have a summer program that offers social and cognitive stimulation and an opportunity to play with typical peers in addition to those with special needs.  This is why we wanted to go the private school route rather than the ESY at the public school.

To suffice to say, we do not always get what we want.  Sometimes we have to fight.  And fight and fight.  I am saddened because it isn't even so much about the preschool--the preschool who will only allow her to attend if I provide her with a 1:1 aide.  It is the fact that this is the beginning.  I am sorry to sound so negative, but this is indeed the beginning of the fighting.  The fighting that Andrew and I will be doing on behalf of Ellie for the rest of her life.  I am already tired of fighting.  Fighting for health care services.  Fighting for education.  Fighting for social acceptance.  I am tired.  I am exhausted. Yet, fight I will because if I do not fight for Ellie, who else will?  If I do not fight, how will things ever change?



It is a long story (most of it is in the letter below), but Ellie will not be going to our selected place this summer.  The place we decided to go with came highly recommended--well their other location came highly recommended by several families within our Ds community (I should have gone to the other location!).  I believe that our specific location does not have an open-minded director and as such made inappropriate recommendations to the corporate office who makes the final decision.  I went up the ladder and argued.  I got them to review her case, but we will still not send her there no matter what their final decision may be. Unable to let it go, I finally crafted a letter to the corporate office.  I have not sent said letter because my anger is not allowing me to compose my complaint and experience in an appropriate matter--it is more of a rant.  That being said, I am posting it here. . . spelling errors, grammar errors, and repetitiveness.  It is long so just look at the 3 reasons Ellie supposedly needs an aide.  Please also take into account that while I have often discussed Ellie's difficult behaviors related to ADHD, she has been doing remarkably better in the past two months since she started taking a new medication.  When I say that she was behaving like a typical child, I am not exaggerating.



Dear Corporate Office of X,

This letter is in regards to a horrible experience that my four year-old Ellie went through on March 19, 2014 and March 27, 2014 at your X location.  My daughter is a highly functioning child with Down syndrome and we were looking to enroll her in your preschool program at 4 hours per day, three days a week during the summer.  

My daughter had her visit at X on March 19, 2014 under the observation of myself and J, the director of your X location, which I felt went very well.  On March 27, 2014, I contacted J as I had not heard back if Ellie was “cleared” to attend your center. I was shocked to learn Ellie could only attend your center if my husband and I provided her with an 1:1 aide at my expense.  I understand that this decision was made by corporate using the observation notes made by J as well as my parent intake form and doctor’s notes.  Ellie’s doctor made no notations for special accommodations and I made a notation under toileting. 

I understand the necessity for an observation as this allows the parent and the director to see how the child fits in with the class and where her true challenges as well as strengths may lie.  I am not naive.  I recognize that my child is developmentally delayed.  This is why we selected the 3-4 year-old class even though she will be closer to the age of 5 by the time summer arrives.  

I do not know what was written on Ellie’s observation form by director J, but I do know what I wrote on the form and what I observed.  I spoke with A, your regional director who gave me 3 specifics reasons as to why my daughter needed an 1:1 aide.  One reason is in direct violation of the American Disabilities Act with regards to daycare centers.  There was an accommodation that could have been easily made without the need for a parent to pay out-of-pocket for an aide.  The other two reasons, were completely off-base and typical child behaviors.  They were not behaviors related to her having Down syndrome.

The three reasons are as follows:
1)On the parent intake form, I disclosed that the areas where she needs help is with opening yogurt containers (a moot point since you do not allow outside food) and that she requires a pull-up, but rarely pees in the morning.  I was told that this was a HUGE deal as you do not have the support staff for this.  While I do understand that the teacher cannot leave the children unattended, it is illegal as per the ADA to refuse a child on the basis of not being toilet trained if the facility has diaper changing areas anywhere within the building.  Seeing as X accepts children as young as 6 weeks of age, it is safe to assume that some of your clients are in diapers?  An easy accommodation that has been performed at other care facilities is to change the child’s diaper on a mat within the class room.  This does not require a 1:1 aide, but a mat.  A cheap mat which I would have been happy to provide.  Additionally, as I explained in great detail to J during Ellie’s observation, my daughter does not urinate in the morning.  In fact, she wears underwear to school. She usually does not go until 2pm.  She would have only been at X until noon.  This means that my daughter would not even urinate at X and as such would not require a diaper change or assistance with the restroom.  Not to mention, can you honestly tell me that all 3-4 yo never have accidents?  Never need help pulling their pants up/down or being wiped?  


www.ada.gov



2)Transitions can be difficult for my daughter and by that, I mean to she may need reminders to do things.  She does not have full out tantrums or anything to that extreme, but sometimes she needs told twice—sometimes face-to-face. This is something that is common with all children.  Especially young children.  During Ellie’s observation, she entered the classroom during circle time.  She entered a large room full of new toys and was expected to attend to circle time WITHOUT knowing the routine.  She went to the back of the room and pulled out a bin of plastic dinosaurs.  I approached her and told her to clean up and sit in circle time.  Guess what?  She cleaned up and sat in circle time.  She sat through 2 stories and even participated in the finger play at the end.  Can you honestly tell me that ALL children on their first day of school do this?  

After circle time was center play.  Ellie sat at a table with two little girls and played with the kitchen food.  I was thrilled to see her experience this as right now she is in school with predominantly boys who do not socialize.  As she moved to another table, she tried to play with another girl who angrily refused to share.  To me, that was age appropriate behavior and preschool provides the perfect opportunity to teach sharing toys.  Does that girl who refused to share need an aide?  I think not.  The big test was clean up.  The teacher says in the back of the room to clean up.  Apparently, at X it is expected that all 16 children immediately comply on the first time every single time or they need an aide.  You see, I am not even sure my daughter heard the teacher as she was at the front of the noisy classroom engrossed in playing.  I told her it was time to clean up.  She tried to comply but needed a little help knowing where things go—please understand that she has never been to this classroom before.  She needed ONE reminder to clean up and another direction to tell her where the play mop went.  I heard the teacher tell two boys in the back to clean up a second time and they do not have aides.  Why is my daughter labeled as “trouble with transitions” when two veteran 3-4 yo needed reminders?  Do they need aides too?  These behaviors for which my daughter was inappropriately dinged for are typical behaviors of typical 3-4 yo.  My daughter is being punished for acting like a typical child?  It was her FIRST day in the class—an unfamiliar classroom willed with new toys, strange children, and an unfamiliar teacher!  She had no knowledge of the rules or routine.

3)This one actually makes logical sense to me.  When we first arrived, the class was outside.  What we didn’t know is that they were lining up to return to the classroom.  J allowed Ellie some time to play on the equipment while we discussed the parent intake form.  This also allowed J to see that my daughter has no gross motor delays and would not require assistance to navigate the playground equipment.  There are two playgrounds connected by a chain link gate.  This gate was not locked and the handle is at the perfect height for a child.  My daughter opened the gate.  I understand that this is a safety concern.  That being said, she has never been there before.  She was not aware that she was not allowed to go through the gate.  All she saw was another play-scape.  Does she not get a chance to be told “no, we do not use this gate”?  If it is such a big deal, why was the gate not locked?  Is she the first child to have ever tried to open that gate?  Are you teachers so neglectful that they do not watch the children?  I would say if my daughter consistently disobeyed rules known to her, then that is indeed a problem, but she has never been to your facility before.  How was she supposed to know?  It is not as though she was running out of the classroom or out of the building!  When we told her it was time to come in from playing, she followed us for indoors and into the classroom—how is that for a transition?  

In summary, I just want to make sure that I understand correctly, all 16 of the 3-4 year-olds in the classroom never have potty accidents.  They never need redirection.  They never need to be told something twice. All sixteen of them.  Every single day.  Even on their first day when they do not know the routine.  Is this correct?  Because if it is not, then reasons #2 & # 3 given to me by your regional director show discrimination and unjust reasoning behind my daughter needing an aide.

Now I do recognize that you, at the corporate level, did not meet me or my daughter.  You did not see her ability to interact with other children, move from activity to activity, or relate to the teacher.  You did. not. see. it.  Therefore you went by both my notes and by J observation notes.  I completely understand that your decision had to be based off of markings on a paper.  I recognize that my notes laid out the potty training needs, but I fear that J may not have been detailed enough or even recommended an aide.  I am not confident as I have not seen her observations.  I mention this because at the very end of our observation she asked me if we discussed Ellie having a shadow aide.  J seemed to believe that she discussed this with me BEFORE she even met Ellie.  The ADA asks that staff disregard their own preconceived notions.  My daughter does not have an aide at her PPCD classroom at Forest North Elementary nor has she required one at the various drop-in daycare centers in the Austin area.  Why she suddenly requires one is beyond my comprehension.

When I spoke with J on March 27th, she was very polite and did put me in touch with A so that I could learn how this decision for an aide was reached.  A was also very polite and asked me to describe Ellie’s observation and provide clarification on various notations that she saw on Ellie’s forms.  She requested Ellie’s IEP which at this point is 7 months old and promised to resubmit our packet for review.  After careful consideration, my husband and I decided that it is not in our daughter’s best interest to attend to a preschool that places unreasonable expectations on a little girl and is unwilling to fully comply with the American Disabilities Act. 

Your daycares/preschool facility came highly recommended by several clients at your Y location.  Some of the clients have children with Down syndrome.  Some of these clients indeed have potty training accidents and developmental delays.  Yet, none of them were required to have an aide.  These clients love the director at your Y office and love their experience there.  It saddens me that we did not receive such an experience. Perhaps it would be beneficial to educate the staff at other locations?  That just because a child has a disability doesn’t mean they required a 1:1 aide.  

Sincerely,


Anna Theurer



At this point, I am tabling the private summer preschool.  Prior to Ellie's observation with X, I had been in contact with several other places.  Money, location, available slots, as well as attitude towards having a child with Ds in their program contributed to our selection of X (and a few others that I did not mention here).  I am so worn out from this experience with X that need a break.  Fortunately, Ellie did not know that she was on "audition" and rejected.  I worry about the day when she is old enough to understand. . .

14 comments:

  1. Anna,

    I'm sorry. Really sorry that you are going through this because I know that it could easily be me writing this post and letter now, this summer, the future. And I hate it. I hate it for our kids and our community. It is unfair that our kids are always held to a higher standard whenever someone hears the words Down syndrome. I'm not saying that there shouldn't be standards, but to me it seems are kids are given ONE chance to show they can do something while other kids without Ds/spec. needs are given multiple opportunities and no one thinks twice about it.

    I'm angry for you and I really wish that people would understand more about our kids before making a judgement on one ONE observation. It sucks that we always have to fight for something that should simply be available to our kids. I fear that exhaustion and frustration will take over in the coming years as the fight gets harder and there is more red tape involved. I pray that we have the stamina to keep fighting the good fight for our kiddos who deserve opportunities to be engaged with typical children.

    I actually do think you should send this letter as is. It's very good and it shows how silly their objections and reservations really are. Nothing in it is untrue and while you think it's rant, I think it's rather professional and calls them out on their BS. I understand if you don't send it, but I hope that you'll send them something. They need to know that what they've done is WRONG.

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    1. Thank you, Stephanie! I do feel like they are being ridiculous. Ellie is not always the best behaved child. I recognize that but on that particular day, she was at her best and awesome. Yet, she was judged anyway unfairly.

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  2. Ugh. What a battle. I hate that we have to fight so hard, and IF we win a battle, then we have to worry that they will try to prove that they were right. Look past the freaking label people, see the actual child. Now I am so pissed that I want to write a letter too.

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    1. You can write a letter, but I know that you have written many letters like this for various things--hippotherapy, etc. Too many battles, TUC. Too many.

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  3. Ugh, so sorry you're having to go thru this battle. I had my own when we lived in Maryland but thankfully it only lasted two years (moved back to Illinois).

    I agree with Stephanie - clean up the spelling/grammatical then send the letter. It is not rude but forceful and asking them to answer valid questions.

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    1. "thankfully it only lasted 2 years?--GAH!!! that is two years too long for you all!

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  4. Anna, I just had to comment as this was heartbreaking to read! I've used the same day care for over 10 years and it's relatively small (less than 30 children). We've had all different types of children (although none with DS in my tenure but autism, CP, etc.) and they have all been welcomed and respected. It's a small privately owned daycare, not a chain or national corporate entity and maybe that makes a difference (but also a professional center, not an in-home type of informal setup). They went way above and beyond the call of duty when my preemie really needed to be isolated for a few months to avoid RSV because my insurance company balked at the $10K immunizations for RSV. They gave her an individual teacher dedicated just to her (to avoid contact with other children/teachers) and her own space, no questions asked or extra fee charged. They are a second family to my children and I know they would welcome a child with DS for the opportunity to teach the other children as well as care for the child with DS. I wish you lived near me!!! Sue H.

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    1. Sue, goodness! I wish that I had that day care near me.I am so happy to hear that you have had such a positive experience. It is the way it should be. When Ellie enters kindergarten, I will be looking again as I anticipate going back to work. I will NEED childcare for when she is not in school. Perhaps a smaller, private daycare will be more receptive.

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  5. I'm so sorry, Anna. I agree that your letter is great and you should send it. You should copy as many people as possible on the letter -- the director of the other preschool, any directors at any of the other locations, as well as any regional or national leaders, I think. You could see if this preschool is certified by the National Association for the Education of Young Children, which certifies daycares and private preschools and makes sure they meet a litany of standards. If it is certified by them, in other words, given a star rating, send it to the people from your state or county who are part of that group.

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    1. You are very wise! They are certified as a preschool and as a daycare. I will be sure to send it to the people that you have listed. Thank you for taking the time to help me out. It is very much appreciated. While it may not change things for Ellie, maybe things will be different someone else's child.

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  6. I'm so sorry that you are having to go through this, and like modernmessy suggests I would copy this to as many people who are involved. And, if you are brave enough, perhaps the local press?

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  7. Your letter is written perfectly. I would absolutely send it.

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  9. Oh, Anna. So many battles. I'm heartbroken for you right now - and furious and exhausted, all at the same time. What a colossal amount of bullshit. I wish I had the words to help, but all I can do is stand beside you. And send evil thoughts & bad karma in their direction. I hope mention of the ADA made them nervous.

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