Rhema’s first school pictures turned out okay; she would not smile big for the photographer. But I still like the pictures as it’s her “I’m trying not to smile” face and she is cute no matter what face she puts on. LOL! It saddens me to see these pictures as these may be her ONLY school pictures she may ever get to take.
We are still in negotiations with the IEP Team folks and they are refusing to provide Rhema a Para even for a short period of time so she can catch up with her peers as far as cognitive processing and body (safety) awareness. They are even refusing to allow me to come back with her (to sit quietly in the corner) for the two week evaluation period to evaluate Rhema’s request for a Para in regards to her academic needs. They are just NOT being cooperative in the slightest way. What is upsetting me the most is Rhema’s teacher is caught in the middle of all this drama and she is the ONE person I would love for Rhema to get to know and be under her teaching. I think highly of Rhema’s teacher and it saddens me that Rhema cannot go to school like her peers and be under the instruction of this amazing lady.
However, Rhema’s safety is paramount over my huge desire for Rhema to glean from this teacher. I would like to think that all of this is just a misunderstanding on the IEP Team’s part and that they REALLY do not understand what we know to be true of Rhema’s safety needs…. But with each passing meeting we explain her medical safety needs and they continue to hold their position. In our last meeting, we brought THREE from Rhema’s medical team, stating that they ALL recommend the need for a Para and the IEP Team still would not see reason. With every passing week of Rhema missing out on school, it becomes almost depressing. I want so much for Rhema to experience life, school, socialization, friends, etc… just like her peers BUT this group is blocking Rhema’s ability to participate.
Thankfully I was able to work out (just today) for Rhema to still receive her PT and OT services even during this unwarranted and unnecessary sabbatical from school. Rhema will get the MUCH NEEDED PT at the end of this week and next week will be able to have access to both her PT and OT services at the school. My concern is that Rhema will begin to wonder why she is not going to see her teacher and her friends…. Oh, I pray that as we go and come from school for just the PT and OT sessions that she will remain oblivious to what she is missing. She is still very young and very delayed in her cognitive processing so I do not worry too much about this, but the thought of her actually comprehending what she is being wrongfully excluded from is too much for me to bear. Rhema was LOVING school and to have it abruptly ended by a group of folks who have only met her for a few weeks and think they KNOW what she needs is ludicrous! Where were they the last three years while we’ve walked this journey with our daughter???? Who are THEY to say emphatically that they KNOW that whilst dealing with 10 other kids that they can keep Rhema safe???? Just in the 4 weeks Rhema was there she put a marker top in her mouth and took a snack off of another kid’s plate the was way to big for her to handle given her issues with choking and NO ONE CAUGHT IT! I left my quiet corner and intervened both times!! At home tonight, under my watchful, eye she got one big of a piece of noodle in her mouth (that I missed in my chopping), choked and threw up her dinner! I know of what I speak when I say she needs constant supervision until she can develop out of these dangerous behaviors.
We’ve been told that the only alternative we have now is “due process” in which to get the powers that be to get Rhema what she needs so she can return to this precious teacher’s classroom. What are we going to do now? We don’t honestly know…..
This email may sound more like a rant, and less like an update, but I’m being honest in what we are experiencing and also want to paint a clear picture of why we ask for prayer. Up to this point in Rhema’s life, most of our battles have been combating what Spina Bifida has done to our precious girl’s body. We’ve been blessed to have few folks and factions we’ve had to battle, but even with the few we’ve had, we’ve always striven to represent Jesus well during the process. This situation is no different. We have and will continue to represent our Lord and Savior well; we ask for prayers to go forth from our prayer warriors and prayer partners to help give us the strength and wisdom to continue. Rhema is what is important here— her safety and her success.
So, again, we ask for your prayers so that we will first and foremost represent Jesus well during this process, and that we have wisdom, discernment and perfect hearing on what the Lord would lead us to do. And I am also asking for the Lord to turn hearts toward Rhema and what she truly needs. Notice, I do not say, turn the hearts toward us and so we can get what WE want… this is not a competition…this is not “we win and you loose” situation. Right now Rhema is LOSING! One of the members of the IEP Team actually said “one of us will win this” and I thought how sad that this may have become a competition instead of WHAT IT IS! What is it? IT IS A LITTLE, BLOND HAIR, BLUE EYED THREE YEAR OLD, PRECIOUS CHILD NAMED RHEMA WHO JUST WANTS TO GO TO SCHOOL!!!!! PERIOD!!!!! SELAH!!!!
We thank you for your continued prayers and support. We know the Lord’s got this and if this is not the place Rhema needs to be, we know we will discern that too and wholly trust that the Lord has somewhere else where Rhema can go and receive what she needs. Where Rhema goes, blessings follow and I pray we are able to work things out for this school to be blessed by her. She is truly a wonderful child to know and we are an “all-in” kind of family. Where ever we are planted we bring our strengths, our energy, our hearts and strive to be a blessing. I pray that this school see the asset we could be and allow us to partner with them over the next few years!