Into the 6th week!

We have already completed FIVE weeks of preschool -- FIVE!! I can't believe we are already on our sixth week.
          Doesn't really seem possible?

With that said, we've only actually attended a total of five weeks because we both were so sick for week, and out of those fives weeks, we've only been a total of 10 times. Ha!
     How sad is that?
          That's not hard to do when you only go Tuesdays and Thursdays though, and for now, that is more than enough for Jocelyn. Up until this last week, she simply did not have the stamina to make it through the nearly three hours of school. You'd think three hours wouldn't be a big deal or most kids, but all the stimulation, therapy and stress on her body simply is too much.

I have been meaning to write about preschool for oooooh I don't know, for the last six weeks or so, but there just never seems to be time for it. With Justin still gone, not sleeping much and caring for Jocelyn by myself all day everyday, the free time that I do have, I spend it either cleaning, doing a quick workout to keep stress down and stay healthy, or indulge in much needed naps.

The first week of school was truly pathetic and disappointing. In fact, I was pretty sure this was absolutely not the place for us {and it still might not be, but we are seeing it through the year}.

During the first week, Jocie was of course introduced to all her classmates and both days cried her eyes out during circle time. She can't STAND when the kids count, sing or recite the Pledge of Allegiance or ANYTHING in unison ... she just won't have it. Breaks my heart to hear her scream and cry crocodile tears. This aspect of preschool has yet to change for her. :( It doesn't help that there is one kid that constantly wants to pull her hair. He pulled it TWICE during the first 30 minutes on her first day and I thought I would snap right there because that kid was pulling it like crazy. The staff thought it was because she was the only one with curly hair? Uhm, I don't think so. However, in the attempt to be objective, he has Down's Syndrome {and very use to having all the attention} and then here swoops in Jocelyn on his territory and steals all the lime-light. I'm sure THAT is the reason he pulls her hair. Nevertheless, that crap needed to come to a screeching halt!

Also during the first week Jocelyn met two of her therapists, PT and speech, and those were night and day experiences. The physical therapist has a warm, jolly-ness demeanor {seriously a total teddy bear with a furry bead and all}. Jocelyn seems to like him. He is positive and seemed pleased with Jocelyn's performance and progress thus far. In fact, he said "she's going to be a blast to work with ... I'm so impressed."

Now, the speech therapist? Not such a good time right there. After meeting her several times prior to starting preschool and interacting with her, there was just something that was off-putting about her personality, her general disposition ... just something. She is very pregnant {and now is at home on bed-rest, or she's already had her baby}, but I couldn't tell if she was just miserable and uncomfortable, or if it was the fact that she simply didn't like her job, not interested in working with Jocelyn and I, didn't like kids in general, or if it was the fact that she had yet to experience what it means to be a mother. You see, this is her first pregnancy, first child ... I'm imagine things will be totally different once she experiences that you would go to the ends of the Earth for your child, that you would die trying to better their life, that you want the best for them, that you ...
          ... yea, let's just say I'm sure her life and her outlook on life, will be different. Perhaps it will make her a better therapist and person in general.

Anyways, during the first week of school ... the VERY FIRST DAY ... this speech therapist was hard core pressing me about whether I preferred a functional approach versus an academic approach when it came to Jocelyn's therapies and schooling. I sat there looking at her going "What do you mean?"  I suppose in the world of the education system, I simply did not understand what she was getting at. Seeing how the last three years of Jocelyn's life has been therapy driven, and that is my mindset I suppose, I choose a functional approach. After all, we all need her to be "functional" so she can do all the academic stuff ... right? Or at least that was my thinking.

After spending that first day, and the next, thinking about things and this whole functional versus academic approach, I thought it would be best to press a little further and question the teacher about this conversation that I had with the speech therapist. Something didn't feel right.

Luckily, Jocelyn was in the toy center that following day and the teacher wanted to play with her a little bit to get to know her better. While we are sitting there all together, I brought this functional versus academic approach up to her. She began explaining that the functional approach basically would focus on helping Jocelyn learn how to do activities of daily living and "teach her life skills since we don't know her cognition level." Meaning, they would help her identify body parts, how to wash her hands, brush her hair ... her teeth even. How they would work on getting dressed/undressed, potty training and so forth. You know ...

 

"To make my life easier at home." -- Direct quote.

Do you want to know how this went over with me?
Like a ton of bricks.

I sat there and listened to the teacher trying my damnest with everything I had in me to not interrupt, to not show my frustration and disapproval all over my face, to give her the opportunity to really tell me the truth and not hold back simply because she could read my body language -- I wanted the truth! She continued with presenting the idea that by taking a functional approach "some of the burdened could be lifted from me when at home" and how by taking Jocelyn to school I could "go shopping, go get a coffee, read a favorite book, go home and watch a favorite show and they could offer me that break."

Folks, I thought I was going to explode right there. I know what they were trying to say, I know what EVERYONE IS ALWAYS TRYING TO SAY!!! Yes, I probably need a break like there is no tomorrow, BUT what I am NOT doing, is sending my child to school as a babysitter. I understand that people want me to see this as a good thing, for both Jocelyn and I, and how she perhaps was saying those things to give ME something to look forward too, but it sent all the wrong messages to me.

Let me tell you what would make my life "easier." What would make my like easier is for someone that claims to be a Special Ed teacher to first assume that Jocelyn is capable of learning, that she WILL learn {but obviously at a different pace}, that you know what you are doing and will tailor things to her and that you will first TRY before you assume.

Yes, without a doubt, Jocelyn's school day and activities will need to be altered and adapted to her level, but that's okay. I expect you to do that! IT IS YOUR JOB -- DO IT! Jocelyn understands things ... its very clear that she does. Will she have limited cognition abilities? I don't freakin' know, but I'm not going to assume at this stage that she's incapable of learning??!!!

What I was hearing was that "even though we have no plans to test your daughter's cognitive ability, we've already decided that she's incapable of learning, we don't expect she's going to achieve much in the academic world, so let us just basically babysit her and not actually even TRY to teach her anything." Its VERY obvious that they see her DISABILITY before they see her ABILITIES! U know, since...and I quote ... "she's handicapped and all."

Extreme thinking? Maybe. But this is how it came across.

I couldn't have been more disappointed with the staff right then and there. I kept thinking, why do you not even want to TRY ... why?

After class that first week I was beyond disappointed, discouraged, down-right pissed off and yet wanted to ball my eyes out all at the same time.

I went home and started to write an email to both the teacher and speech therapist.
Deleted it.
Rewrote it.
Deleted.
Rewrote
     .... and repeat. repeat. repeat.

I had numerous people read the email to enlist their advice and opinions.
Finally, I sent the email.

Here is the email:

Good Afternoon Ladies,

 

I am writing this email to both of you, Lisa and Sarah, in regards to our recent conversations. Before we dive any further into preschool, there are a few things that I feel that I need to address.

 

It is apparent that the staff not meeting and interacting with Jocelyn prior to attending preschool, rather than simply observing, has hindered things already. I suppose this is simply the way that Berryton conducts themselves, but actually SEEING Jocelyn engage in familiar activities and surroundings would have proved beneficial to get a true example of where she is at on her journey of growth and development. Many assumptions have already been made, and expressed, about how much Jocelyn does and does not know and understand, and no one has even started working with her yet. Is she delayed? Of course, and that is the purpose for preschool. Preschool was originally intended for kids with delays and instead, now it’s the other way around so it seems difficult to add a “special needs” child.

 

I need someone to simultaneously see both Jocelyn’s abilities AND disabilities, to focus on the abilities she does have FIRST, then how to alter things around her disabilities.

 

In the beginning, it was indicated that Jocelyn would not be accessed at this time in regards to academic/cognitive skills; however, it is obvious that this has taken place already, otherwise, there would never be any question as to whether we should focus on functional versus academics. I do not think I would be incorrect to say that it has been a great while since there has been a child like Jocelyn in preschool. Things like CVI alters everything a child does, no child demonstrates their CVI the same, and it alters the manner in which they require to be taught. CVI is totally different than blindness &/or other vision issues, and when you have that on top of motor and verbal issues, you have even more obstacles to overcome. Regardless, these are simply obstacles that we CAN overcome; they are not complete road blocks!

 

I believe my husband and I to be realistic people. We set goals, we devise and implement a plan of action and when/if something doesn’t work, we tweak things and try something new or different. Will Jocelyn ever run a marathon or be a surgeon, probably not, but to assume that she cannot learn basic preschool information at this point in time would be absurd.

 

When discussing our current approach to speech and communication, it was felt that the success we have made thus far at home was seen as insignificant. We have worked hard to progress from no visual attention, to visually seeing an object, to touching and then to making choices. It’s all a process and fabulous progression that we are extremely proud of. Jocelyn is able to tell the difference between toys, books, cartoons; able to follow commands, etc. I have no doubt that she can learn to distinguish between colors, shapes, etc. It’s how we introduce these concepts and teach her that will make all the difference. All I am seeking is for someone other than me, to try…just to TRY!

 

Sarah, we need you to pull out your box of goodies and come up with a collective way for Jocelyn to communicate with the other kids, staff and learn/interact on an academic level. If augmentative communication or communication via the iPad is not your strong suit, it is absolutely vital that we enlist the help of someone who does know these things. As I mentioned in the transition portfolio and during the IEP meeting, our goals are to foster socialization, communication and learning by both intentional and unintentional methods.

 

We have no idea what Jocelyn can or cannot do in the classroom because we have not even begun. At home, she makes choices, she has an opinion, her needs/wants are very apparent but we use a systematic way to ensure she has a voice. The same would need to be conducted in the classroom. Only then, would anyone be able to tell what and how much Jocelyn knows. And if she doesn’t know something right away, that’s okay because many of those children in the classroom didn’t as well but they started somewhere and progressed. Jocelyn may progress more slowly and it may be more challenging, but it is the same nevertheless.

 

I always tell people, if you have trouble moving your body, seeing AND are unable to talk – how would you express that you know what is going on? I said this yesterday, but Jocelyn’s “lights are on and she’s home” and it is our responsibility, our duty, to figure out a way for her to EXPRESS that so others can understand.

 

I am absolutely not comfortable with being asked if we want to take a functional versus academic approach with Jocelyn. I have thought about this for the last few days because on Tuesday, I was sure that I misunderstood; however, after yesterday with things being explained in further detail, I am confident that I understood perfectly and I suppose I am disappointed. I am not even sure why this would be of such importance this early in the game to begin with?

 

Please allow me to be clear, it will be completely unacceptable to focus on things like activities of daily living while at preschool (ie getting dressed, brushing teeth, etc). Yes, we want her to use her hands, manipulate objects, etc but with an academic purpose. Lisa, you and I discussed learning things left to right, up & down, in & out, how to complete a task, etc. Those are great, acceptable things to perform in preschool because they serve an academic purpose. I fully expect for Jocelyn to work and play like any other child but with the activity or toy or whatever it may be, to be adapted for her. I realize this takes time, but this is how you learn and ultimately PROVE that you know the basics. If she is not given choices or encouraged to distinguish between shapes, colors, etc … then how would she ever learn in the first place? She might not be able to demonstrate or distinguish between certain things right away but how many of the other kids state the wrong color or mislabel an object? There is no difference except Jocelyn has “disabilities.”

 

We all know that kids could care less about shapes, colors, or whatever … it is only when those items have meaning behind them that anyone even starts to care and learn. We tailor things to Jocelyn, make it rewarding and she WILL LEARN. A puppy paw might not be rewarding to Jocelyn like the other children, but cheering and clapping is rewarding enough at this time. We have to start somewhere and then push forward to get a positive end result. Assuming she won’t be able to do something gets no one anywhere.

 

I have learned that if Jocelyn doesn’t learn something the first 15 times then guess what? I tried additional 20 times or switched up what I am doing. Jocelyn is very teachable or otherwise she would not be able to follow my instructions and perform certain tasks. It is imperative that people do not look at her head turning, lack of eye contact at times and underdeveloped motor skills and assume that she will not be able to do something. SHE WILL SURPRISE YOU! I promise you that!

 

The job and relationship that we had with TARC was family/home centered and functional/life-skills centered. I firmly believe that if we are to maintain our presence in school, it will absolutely require our focus and energy on academics and socialization because after all, that is the whole purpose for electively being there.

 

I am not a mother that is looking for a break, that doesn’t want to teach our daughter but rather looking to see if something more can be gained outside the home. Homeschooling is not scary or intimidating for me, but as her mother, I have to allow her the chance for new experiences. I can already tell that Jocelyn loves being around the other children, but that cannot be the only component that she receives while at school. Yes, socialization is important, both my husband I want that fully encouraged in any and every activity, but the academic portion is equally important! I have no problem stepping back and letting others help and get to know Jocelyn, but I need to SEE people take the bull by the horns, be ready and willing and be that person.

 

Please understand that I am excited to continue learning together, but we all have to be on the same page or things will be chaotic, undesirable and nonproductive.

 

Looking forward to seeing both of you ladies bright and early on Tuesday!! Please feel free to email, call or we can discuss things further come Tuesday &/or Thursday.

 

Sincerely,

 

Angie Powers

 

So there you have it -- those were my "two-cents."

 

This went over wonderfully ...

          NOT!

 

The following week we came to preschool on our normally scheduled day. After circle-time and the morning routine was completed, the teacher pulled me aside and asked to talk.  She informed me that they called an emergency meeting to discuss my email with the team. They decided it would be best to have a conversation with me to discuss all the issues that I expressed in the email and even hired a substitute teacher for the morning so we could spend "as long as we needed to get things figured out."

 

We spent the entire morning in a conference meeting {which also meant I left Jocelyn alone for the first time} and we went through the email thoroughly.

 

My email hurt their feelings.
 

Not my intention, but unfortunately, I don't get to care about their feelings -- I have to care & worry about Jocelyn FIRST.

 

I know this blog entry is forever long, so let me be brief. The meeting turned out to be extremely beneficial. I was given the opportunity to learn more about the teacher, her background and so forth. We were able to discuss in further detail my expectations, desires, etc.

 

I even took a recommendation from my sweet friend Tamara and told them that I know its hard to "take the bull by the horns" with someone's kid, when the mother is right there. Tamara told me "that even though your friendly and easy to talk too, its hard to play with the cub when mama bear is watching." I know that's true. Part of me doesn't really care, but that doesn't mean its not true. I kept thinking of course, "if you aren't doing what I expect when I'm here, then you sure the hell won't when I'm NOT here."

 

The teacher told me that she worried that she couldn't be what I expected and that the overall team felt intimidated that I knew so much, that I'm so "good" with everything in regards to Jocelyn, and that they perhaps couldn't live up to my expectations. As flattering as that may sound to some, I wasn't flattered per say, but surprised. I suppose it didn't cross my mind that they would feel intimidated by what I know, what I do or how I do things. Just caught me off guard. This would however explain why they weren't being hands on with Jocelyn the first two days, why I was doing everything, etc {which was also a complaint of mine}.

I'm an aggressive person, I have high expectations and expect the best. I can't help it and I don't plan to ever change that. I have to remind myself that not everyone is aggressive, some have to ease into things, and that can be hard for me.

 

So those were our first three days/experiences with preschool ... the school system in general.

 

The meeting paid off and thankfully, we've done a 180 and things are completely different.

 

The following school day after the meeting, the para completely took over the minute Jocelyn and I walked into the room. Jocelyn still cried her eyes out but I literally sat on my hands and kept my distance and allowed them to soothe and distract her. I did a lot of observing, answering questions and meeting new team members for vision, hearing and so forth. It was an extremely chaotic morning, Jocie zonked out by 11am and we left early, but it was a tremendous improvement in approach and energy.

 



A huge pleasant surprise.

 

I continue to be in the classroom with Jocelyn even though the staff does most everything for her. A lot of the times they give me tasks to do with other kids {which was something we discussed in our meeting ... I don't mind being free help}. The therapist and I are communicating and working well together. Together we've come up with key vocabulary words, goals, etc and I'm happy with those things. Jocelyn's having a lot of new "firsts" like using adaptive scissors {it didn't go over well and that's okay ... shes not ready for that ... but no harm in trying}.

 

Overall, I'm pleased with the way preschool is moving along. The one little boy that pulled Jocie's hair constantly {and he's a quick lil booger} has moved to a different school district and Jocie is now the only "involved student" so that changes the dynamics of things and helps the overall situation.

    

I have to say, I truly feel like the staff as a whole are trying their best to keep Jocelyn engaged and learning within her abilities at this time. They are also helping the other kids to interact and get to know Jocelyn, discovering ways to adapt and tailor things for her needs, and all around beginning to get to know her.

The cutest thing? There are two peer models in the classroom that are almost 6 years-old. They are the SWEETEST to Jocelyn. Jocelyn makes the second girl, the other one is named Lucee. When Jocelyn cries, Lucee is such a mother-hen and rubs her back saying "its okay, its okay."

HEART-MELTING!

 

The other peer model, Kiel, always tries to get Jocelyn to look at him and makes SURE she knows that he's saying hi. Since Jocie does a lot of head turning, he does this little jig up and down, side-to-side to get in her visual field so she can catch him with her vision. So cute!

I pray as I consider weaning myself away from the classroom, that all of these things continue and its not all for show.

 

I plan to still be present for the therapies, but perhaps I'll start running a few errands, reading a book in the car, maybe I'll really go and grab that coffee ...

 

-- maybe just maybe -- that will be in my future.

 

I still have many reservations as to whether the school system truly is the right course for us, but only with time, intuition and prayer will we really be able to tell.