We are finally here.
Tomorrow is Scarlett’s initial IEP meeting with the school district. She turns three mid-April, which means she is “graduating” from Early Intervention and moving into services provided by our local school district.
For those of you unfamiliar with what that means, I’ll give you a little snapshot.
Over the last four weeks, Scarlett has undergone several different assessments from several different professionals in several developmental areas. Because of Scarlett’s pre-existing autism diagnosis, the district wanted a “full” assessment–psychology assessments, occupational therapy assessments, health assessments, speech assessments, general education assessments–the whole thing. Basically, our life has been full of shuffling S from one appointment to the next, so these people can evaluate S and her proficiency in each of their respective disciplines.
It. Has. Been. Tiring.
You repeat the same information over and over and over. You bring copies of reports you’ve already given them because they don’t share information amongst themselves. They do tests they’ve already done before. It’s exhausting.
At the end of all of that, you go and sit with all of these professionals in a meeting called an initial IEP (Individualized Education Plan). This meeting begins by going over all of the assessments these professionals have done during the assessment period, and give you the results of those assessments. The district people will then determine your child’s eligibility for special education services based on the findings of the reports conducted over the assessment period. If your child meets eligibility standards, the meeting then shifts into creating the actual IEP–aka, what the school district will do to help your child succeed in an educational setting. In a perfect meeting, the district offers services you’re good with, everyone agrees, and the IEP is signed. The district is then contractually/legally bound to uphold the supports created by the IEP.
Here lies the problem with us.
For my child, she is a VERY different human on paper than she is in real life. She is a VERY different child in familiar contexts than unfamiliar. She is a VERY different child with adults than she is with other children.
As a recap, S has been in therapy since 15 months old. Over the last (almost) 2 years, she has been in therapy anywhere from 2 hours a week to over 15. She knows how to do therapy. So when an adult comes to her in a therapy/assessment type setting, girl can work it like she’s been doing it since birth.
On the flip side–throw her in a room where she’s supposed to play with other kids (especially unfamiliar ones), and she’s going to melt down. But when you say that to the SpEd professional sitting across the table from you, they look at you like you’re crazy–because all they see is a little angel child who is doing everything that’s asked of them.
We requested all of Scarlett’s reports ahead of time so that we weren’t blindsided by the numbers. When the psychologist called me to give me the results of the assessments she’d done, you could almost hear the skepticism in her voice when she went over the parent report assessment with me. Scarlett was in the very top category in every tested area–but the therapists haven’t seen that in their assessments. I look like I’m exaggerating or like I want her to be worse off than she is, and I hate that.
In reality, my child cannot function in unfamiliar situations. All children do, to some degree, but she becomes incapacitated. She won’t leave me side, she cries, she screams, she retreats–it takes her a lot of time to get comfortable in situations.
Same with people. In therapy environments, we’re in a place now where the ABA company can send a substitute therapist and it skeeves S out for a minute, but girl snaps out of it in a few minutes. But in a non-therapy setting, it takes her a VERY long time to warm up. For example, we’ve lived in California for a year and a half. There are people that she sees at church three times a week that she STILL retreats from. For the people that don’t completely send her over the edge, it took her almost a year to get comfortable with most of them.
It is weird to describe a child like that–one who adjusts so easily to therapy settings–to a professional. I don’t enjoy trying to describe that child to people who feel like they’re seeing the opposite child. I’m nervous for the IEP, because I can’t be sure that the people doing her assessments truly grasp that difference, and I can’t be guaranteed that they are taking that into account when determining her deficits.
But the thing I’m dreading most isn’t actually the meeting itself–it’s what the meeting brings. I am convinced that knowing the actual percentile numbers for your child is one of the most difficult aspects of special needs parenting.
If you look at S now and compare her to where she was, you’d think she’s come SO FAR–because friends, she has. Going into these assessments, I am sitting back thinking she’s killing it–she looked like she’s kicking test butt. But then you get the report numbers and realize just how far behind she still is. For instance, S is sitting in the 8th percentile in one of her basic-life-function areas. Friends, I don’t think that ever gets easier to hear. It’s almost like I’ve completely forgotten what a “normal” child looks like, because my idea of “normal” is now so warped. It’s unsettling to feel like your child is making so much progress and feel like she’s finally starting to close the gap, to only get smacked in the face with the fact she’s really not. You start to question what you thought you knew.
So, to the individuals who will present in our meeting tomorrow:
Please treat us gently. I think it’s easy to forget that the people on the other side of the table are not just “parents of another kid who may get thrown on your caseload”. We, as professionals, want to tell parents ALL THE THINGS about their child, but please remember that this information is hard to hear. I have gone through childbirth. I have nursed my child. I have kissed her scrapes. I have held her while she’s cried. I have rocked her while she’s slept. I have cried during the months where she wouldn’t eat and couldn’t gain weight. I had the conversations with her doctor when they wanted to give her a feeding tube. I have spent countless hours in prayer for her (and you). Please remember that this autism thing was not a journey I asked to be a part of–it has shaken me to my core and has made me question things about myself that I never thought I would question. I experienced true grief when they gave us her diagnosis–and the metaphor is true. Grief comes in waves. There are days where you accept it, and you’re good to surf around in them. But please remember–there are other days where the grief is overwhelming, and we are doing everything we can to keep breathing. With this meeting tomorrow, I am barely breathing. I have spent months preparing for this meeting–and I am spent. Please treat us gently. Give us information about my girl in the most compassionate, gentle language. Remember that you go home at night and leave all of this behind you–this is our life. It will never end.
Please treat my child like you would a child that is close to you. Keep her best interests in heart. Fight for her when I don’t know how to. Teach me how to better fight for her. Please remember that Scarlett isn’t simply “another kid on your caseload”. She is so much more than that. She is a strong, fierce, kind, beautiful, funny little girl who has the most beautiful heart. She means the world to me. I just pray you keep that in mind when you’re thinking about how to move forward with my girl.
Pray for Sean and me, friends. I have spent months preparing for this meeting, and I am exhausted. The fact that this thing is here and not going anywhere makes me nervous and uneasy–and I am feeling like I have not done enough.
Pray for the people who have tested Scarlett and will provide her services in the future.
Thanks for joining us in this journey.