My last post was written as I felt in the moment with an aftermath of angst, worry, and the deep grief that comes along the way.
Gratitude was also in that post because there is so much more that parents deal with and I am aware that Larkin is at times so much easier than my teenager. My twins will bring their own challenges that are unique not only because they are typical girls but because they are a unit from birth ~ even though I treat them as individuals (even dressing them as such)
Moving forward requires a great deal of looking back at where we started and how far this little girl has come and what I want to make perfectly clear is that Unit 4 the Champaign school district has been a key player in her success. Yes it is true they don’t currently have the appropriate environment for Larkin but I will continue to work with the Special Education department in any way I can to help them develop a mirror program (or perhaps even better) and then we can move Larkin back into our home district. (Given if there is an opening in the 116 district for Larkin and she can go there)
Larkin has attended school at Champaign Early Childhood Center since 2008. When we first started her intake meeting had 17 people in and out of the room and I brought in pictures of Larkin’s journey to help them see the little girl we lost, gained, and would lose again off and on through the process. I made it very clear that her team would be held accountable but also that I would be an intrinsic piece of the work and support. I trained the staff on Larkin’s health issues, seizure type, diet, and treatments. Everyone was welcoming and eager to learn all about my little girl as if she were the only child they had in the building and I felt calm not only because they were so excited to make a difference in Larkin’s life but in their love for her.
Larkin’s teacher Ms. LeVette, her aides, and especially all of her therapist have worked so hard over the past 3 years to bring out the buried skills in her. Buried under Down syndrome, Epilepsy, and medications/treatments. As I type that last sentence it bubbles up rage and hatred in me for the damage that seizures have caused … I am working on making peace with it but that I fear is going to take a lot of time and therapy. (And wine here and there)
There are passionate teachers and therapist who work daily with Larkin and her peers ~ no matter what they encounter they keep pushing and cheering on kids to make strides in every possible way. What looks insignificant to an untrained eye is sometimes the biggest reason to jump up in the air and scream with excitement.
Larkin is considered severe and profound and I have learned to not only write that without flinching but to say it without choking on the words. I owe a lot of getting to this point to her teacher, aides, and her therapists.
I wrote years ago that having a child with special needs opens your eyes to an entire community of acronyms. PT OT DT ST and there are a lot more I could list but physical, occupational, developmental, and speech therapy form the core of the moving breathing machine behind the scenes of getting a child with delays to become the very best they can be. Training parents to work with their child in very different ways and accepting the journey as it comes is truly a gift and these therapists and teachers help shape the lives of families for years to come.
That is saying a ton and not enough ~ I give 99% of the credit to them and I am in the background absorbing, implementing at home, and monitoring health issues. We breathe as one lung for this little girl and today she is proof of a lot of hard work.
Unit 4 has begun using a system to inform parents of changes in schedule by calling whatever phone number or email is listed. I love this because Larkin rides a bus but my teenager doesn’t and they are at different schools and any type of change affects each differently. I received a call last week at 5:30 a.m. with information of bus schedule changes due to snow and while it didn’t directly affect my home, I would have appreciated the information if it had.
I tell you that because throughout the day I watched as people bashed Unit 4 for making those phones calls. It didn’t affect them so why did they have to get a call so early. Making something all about you is really the way to be a part of a community isn’t it? Unit 4 can’t do anything right for a lot of people and if the district hadn’t informed anyone they would have been bashed but because they do they take it on the chin too. Damned if they do and damned if they don’t.
Unit 4 has done a lot of good things and the high school my son is in is filled with amazing Teachers, Counselors, Deans, and a Principle that work with and without me and frankly at times with and without HIM to achieve great things. I have been thrilled with them but I am deeply connected and involved as a part of the machine the same as I am with Larkin.
I am not saying it’s perfection but Unit 4 has wide open doors and I am at board meetings, parent teacher conferences, I am a steady observer at Larkin’s school, and a part of the Parent Inclusion Network, which brings together parents who have a child with an IEP in Unit 4. I see first hand the hard work being done and I will be a part of the hard work that will always be in front of us as technology and progress is made for our children.
Unit 4 may not have a program that supports Larkin right now but I will push for it to become a part of the curriculum and I won’t walk away until it’s done. The road for Larkin’s education was paved with the sweat & tears of the parents who have gone before me and it’s my duty to continue re-paving, putting up guardrails, and filling in pot holes. They worked for her right to be in school and I am working to ensure not only that it remains but also improves.
So when you are complaining that you received one phone call that didn’t directly impact you, think about the breathing machine that works daily for our children and then think about how you could help improve it for our community and those who are overwhelmed by the system or life.
See you at the next school board meeting, March 14th 6:00 at the Mellon building or the Parent Inclusion Network meeting on March 8th 6:30 at the Champaign Public Library where we will have Linda Tortorelli presenting on how to write an effective IEP & goals.