by L. U. Ann
Thoughts of all the crap we have been through with this school system churn my stomach. I wring my hands while I continue to wait for the meeting to begin. Have I told you how much I despise sitting through these meetings? It’s not because I don’t want to help Baby Lane, but it has everything to do with the administration—mainly the very principal who is on the other side of the door acting as if he is God’s gift. It didn’t have to be this way. All he had to do was follow her Individualized Education Plan (IEP) and all would be fine. She has had an assistant sit with her for the last three years during lunch. In the first year, this same asshole was principal. Nothing has changed. He must have thought he could get away with slacking. No, he must have forgotten that her parents don’t put up with his bullshit.
The school has been in session for almost three weeks. For three weeks, I have seriously contemplated not sending her to school each morning. I would rather homeschool her and know she is safe than put her at risk for choking.
“Mrs. Holmes, I’m sorry we haven’t begun the meeting. A pressing matter has come up and as soon as we take care of it, we’ll be in,” the school secretary pops her head in to tell me. I give her a tight smile and nod. It’s not her fault the asshole principal doesn’t put the safety of my daughter before the school budget. A deep breath does nothing to calm my nerves. It isn’t until I see a pair of piercing blue eyes enter the room that my heartbeat skips and I feel comforted. His dominating stride helps to distract my anger. “Hey, Sugar Pants.” He kisses my cheek. “She is in her element back there.” He smiles. “I’m truly happy she loves school as much as she does.” I couldn’t agree more.
A knock on the door followed by the rush of administrators, teachers, therapists, and others I’m not familiar with settle into a seat talking amongst them. Baby Lane’s special education teacher walks in last and is one of the few to strike up a conversation with us. I have always felt like an outsider during these meetings. We’re supposed to be part of the team, but only on a handful of times has that been the case. Once everyone sits, Devon pulls out his voice recorder and because we are recording, the school must do so as well. I want to roll my eyes. They are more worried about protecting themselves than my child. Since that meeting where the Principal told us he thinks we believe Baby Lane is more disabled than she really is, and the fact that it was conveniently left out of the minutes, we voice record every one of these meetings.
The lady on the far left of me speaks. “Mr. and Mrs. Holmes, I am Mrs. Lombard and I will be chairing this meeting. We’ll go around the table. Please speak your name and your role with Lane.” Names are announced followed by teacher, speech therapist, special educator, and so on. Devon and I speak our names with Mom and Dad attached. My hands are shaking. I don’t know why these things intimidate me. Perhaps it’s not intimidation, but anger for the crap they have pulled this year.
“Mrs. Holmes, we have requested a meeting after receiving word regarding a state complaint you have filed,” the chairperson says calm and collectively.
“Yes, we filed that complaint.” I reply with confidence that doesn’t match how I feel inside. Without a doubt, after this meeting, I pray they will take this issue seriously and observe her while she eats lunch. When I drop her off at school in the morning, I put my trust in the hands of the school. I trust that I will pick up my baby girl safe and sound every afternoon, and not have to worry whether they are keeping her safe.
“We have reviewed Lane’s IEP, and it does not state someone needs to be sitting with her at the table.” My stomach drops, I move forward in my chair just before I speak, and Devon gently squeezes my hand and speaks up.
“Please enlighten us as to what you mean. We have read the approved IEP from last spring and it clearly states supervision during all eating activities.” Devon’s face has become redder with every word.
“What Lane’s IEP states is close supervision during eating activities. It does not—”
“And where exactly is this close supervision?” I interject. “I sat with her the next three days to make sure she didn’t choke. She had a lady standing behind her watching three long tables and other teachers were scattered around the large lunch room. How is that close supervision?”
“The woman standing behind her was assigned.”
“That’s a lie! I asked her, and she had no idea about Lane’s propensity to choke! You’re making stuff up to cover your ass.” Devon puts his hand on my arm and asks me to stop. The bitch has the audacity to sit there and lie.
He turns to the woman and continues. “My wife is right. It’s all a lie. We wrote a letter to the principal and sent it in with Lane on the second day of school. My wife confirmed with the Principal that second day in which she sat with Lane during lunch that he did, in fact, receive the letter we sent in. He was the one who told my wife the lady standing behind Lane was watching her. My wife asked the teacher once the principal stepped away if she was assigned to supervise. The teacher did not know anything about her feeding issues. We have provided you with documentation going back five years explaining her low-muscle tone. This is not something new. This has been the plan all along. She is here for an education, not for you to agree or disagree with doctor’s recommendations.”
“Mr. Holmes, I beg to differ,” the chairperson speaks calmly. Bitch!
“Really, you beg to differ? Please send the principal from last year in here, and he will tell you what is supposed to happen since this principal is incapable of following a medically necessary plan.” I think I’m going to throw up. Why can’t they just admit they are wrong, apologize, and rectify the situation. Why must we continue this bullshit? When no one speaks, Devon continues. “Say for instance, the woman was assigned to supervise our daughter while eating. Please tell me how she will know she’s choking. People don’t automatically throw their hand up to their throat. Let me explain what my wife and I have witnessed too many times. Lane will be eating and suddenly forgets the food is in her mouth or she doesn’t swallow and begins to talk. This is when the food is lodged. She doesn’t move her arms.” Devon abruptly stands. “Her arms stay at her side and she opens her mouth trying to spit the food out. You cannot tell from behind if she is choking. Do you know how I know this?” Devon leans his knuckles into the conference table hunched over. “Do you? I’ll tell you how I know. My wife and Lane’s brother as well as I have witnessed her choking numerous times. We’ve performed the Heimlich maneuver several times. We’ve had to call paramedics several times. We’ve had to rush her to the hospital several times to find out if she aspirated. I don’t understand what you don’t understand and why we have to go over this AGAIN!” Devon continues to stare.
“Mr. Holmes, if you will please calm down and have a seat. I would like to discuss this with you in a mature manner.” The chair speaks up as the eyes of witnesses blink in surprise.
Devon sits. “If you want me to behave in a mature manner, do not put my daughter’s life in danger. It is that simple. Your professional idiosyncrasies are irrational.” The room falls silent.
She has a team of specialists who follow her progression at Kennedy Krieger Institute. The genetics team has yet to find someone else in the world with the same mutation. She continues physical therapy for her low-muscle tone and an occupational therapist to help her fine motor skills. Baby Lane is such a happy child—I don’t think much can take the constant smile off her face. Evan adores his sister and is extremely protective of how others treat her. She is ten and half years old now, but her most recent IQ tests are consistent to her last where she’s about 50-55 on her score. Depending on the skill, her ability to function varies. With Devon’s background, we have sent her to the best doctors to only leave disappointed. We want answers. Answers no one has. I want to know if she will ever be able to live on her own, will she wear diapers for the rest of her life, and what kind of job she will be able to perform. Will she outlive me or will the chromosome abnormality shorten her lifespan? I have fought so hard to move pa
st the loss of Mom, the abuse of my uncle and Caine, and I have in all sense and purposes disowned my father. But I’m having a hard time coming to terms with my baby girl and the possibility of what will happen in the future.
I spent night after night watching over her to make sure she took her next breath. The specialist wouldn’t listen until I demanded a sleep study be performed. Her doctors were shocked to learn she has not only obstructive sleep apnea but central, too. What does this mean? So, while I have sat through meeting after meeting with these school officials telling them to watch my daughter while she eats and it is due to the same low-muscle tone that threatens her in her sleep. I’m not in this to bring attention to my daughter. I don’t want her to have special treatment. What I want is my daughter to be safe. I can’t lose her, and the school is putting her health at risk.
Every year, we must sit down with her team of teachers, assistants, nurse, principal and whoever else the school feels needs to be present to discuss her Individualized Education Plan. When she makes progress, we make new goals for the following year. If she hasn’t mastered the goals set previously, we look to see what we can do to help her along.
Baby Lane continues to have choking issues to this day. We have had to call 911 numerous times due to her lack of muscle tone in the back of her throat.
“Listen here, don’t you think there are enough concerns we need to focus on with helping Lane to become as successful as possible? She’s making progress, and I think we should concentrate on helping her excel academically rather than sit here and waste everyone’s time. I realize you,” Devon points his attention to the Principal, “are not going to apologize for your wrongdoing.” The Principal sits up like he’s got something to say. Devon stops him by raising his hand. He continues, “Let’s move on. What do we need to do to make sure Lane’s safety is never compromised?”
The team of educators turn to one another. It’s funny how the education system works. In my research, I found there are a number of services available to children but are specifically not shared. To hear this was lawful was outrageous. As long as no one brought up the service, the school system wasn’t doing anything wrong. Is this how we’re educating our future? These children will grow into adults. We should be doing everything we can to make them successful instead of just mediocre.
“Mr. Holmes, the reason the State didn’t find any wrongdoing on behalf of the school is because it doesn’t clearly state in her IEP she needs the one-to-one with no more than one-to-three ratio supervision found in the supporting documents you provided. We can amend her education plan to specifically state the ratio and then the school must abide by it. Does that sound acceptable?” Ms. Lombard suggests.
Devon turns and reads the expression on my face. Knowing my answer, he turns back to the lady, “Yes. That will be great.”
I bite my tongue still enraged by the asshole in charge of almost three hundred students. How he can sit there all smug and think his behavior, his actions and words are excusable are beyond me. One day Karma will bite him in the ass, and I hope I’ll be around with a bucket of popcorn watching. No one puts my children in harms way.
“If there isn’t anything else for us to discuss, this meeting is over.” Ms. Lombard says pushing papers toward Devon and me to sign. Baby Lane is now safe. At least that gives me some sense of relief.
Chairs scratch the floor as administrators scramble to gather their materials and get the hell out of dodge. My eyes remain on Mr. Richmond to see if he’s going to look at us or say goodbye. Nope. Not one word. Not one glance. Callous bastard!
“You ready, sweetheart?” Devon whispers in my ear just before kissing the side of my head. Leaning into his lips, I close my eyes thankful this meeting is over and we can go on knowing our daughter is safer.
“Yeah, let’s get the hell out of here,” I mumble loud enough where he only hears.
“Oh, Mr. and Mrs. Holmes, a copy of Lane’s Amended IEP will go home with her in her book bag today.”
“Thank you,” I give her a tight smile, turn and leave the snubbed nose idiots and their stupid policy behind.
“Devon, if I thought for one second sending her to school could hurt Lane, I would pull her immediately. She loves school so much, though. I can’t dream of taking her away from the few friends she does have. Her teachers treat her well. Why do they need to be rude to us? We all want the same thing.”
Rubbing my back, he reaches for the door handle to open it for me. “I know, Sugar Pants. Try not to worry. Like you said, her teachers are great. Now that we have the lunch situation fixed, hopefully, we can put all of this behind us.” I hope he’s right.
Baby Lane has been through so much in her short life. It’s not just the choking and sleep apnea. She has to work one hundred and ten percent while things come easily to those around her. Her perseverance has taught me so much. Devon and I are learning to go with the flow when it comes to our little girl. Even Evan has tuned to his sister’s needs. She doesn’t develop on the same schedule as everyone else, so all those books we have on what to expect were thrown out. I don’t want to know what they say. Evan’s developmental milestones are still fresh in my mind, but a part of me has forgotten little things intentionally. Baby Lane is unique, therefore, will grow when and how she wants. As long as she continues to make progress, regardless of its speed, all is good.
Seventeen and a Half
“Mrs. Holmes, please understand we’ll figure it out,” the doctor says as I throw my head into my hands. Never in a million years did I want Evan to have this.
“Lacey,” Devon rubs my back, “it’s not a death sentence. We’ll get his medication under control, and he’ll be a happy kid.” He tries to take away some of my worries.
I shake my head. “It’s not something medicine can cure. You both don’t understand!” I turn to the doctor. “You’re going to put him on medications that help. He’s going to start feeling better and then BAM, he’s going to think he doesn’t need them any longer and stop taking them,” I confess. I turn to Devon. “It’s not okay because it’s something he’ll have to live with the rest of his life. Why can’t he be normal? Why, after everything, does he have to deal with this, too?” I question.
At this moment, I also take the time to thank the heaven above that Alex hasn’t shown any symptoms.
“When we dwell in the past we cannot put our right foot forward in the present.
Learn from what has happened and live today for opportunities there are - not on what could have been...”
~Dianne Adams
“It’s so good to see you, Lacey,” he says opening his door wider with a warm smile to greet me.
“You, too.” I nod walking past him.
“Have a seat.” He motions to the chair on his left and shuts the door. My eyes travel over the white, perfect walls I used to detest. The dark wood blinds had matched my mood at the time. I take my seat in the leather-upholstered chair. The cushion molds to my body as if to hold me while I sit here for the next fifteen minutes as the guy will inquire all things personal. “So, it looks like life is treating you well.” He smiles.
“Yes, sir. Things have been going pretty good lately.” I respond, relaxing more into the seat. Releasing a quiet exhale, I calm the unsteady nerves. It’s not that I don’t want to be here, I do. This guy has helped me live again. It can be intimidating to sit and listen how someone thinks your actions are good or could possibly cause you to be symptomatic.
“It’s been… What?” He turns away to look down at the opened manila folder, holding pages of each appointment… each medication and how my body has responded to it. “I see it has been three months since your last visit? Have you been experiencing any symptoms?” He sits back relaxed with a leg folded over resting on the other knee.
“Uh, none that I have noticed, and Devon hasn’t said anything.” I look down at my wringing hands. “You know he looks out for stuff like that.” My eyes travel up to his.
“Very good, a
nd yes, I do know he watches out for you. Then tell me, how have you been managing with your days?” Dr. Offutt, the man I couldn’t stand years ago, asks. I’ve continued to see this doctor since I first came when I was pregnant with Baby Lane. It’s amazing what medicine can do to help you feel alive again. Since my visit, oh so many years ago, I’ve been labeled with a diagnosis of bipolar. Shamefully, I hid it from so many people. The label made me feel as if I were less of a person, not worthy to walk the same ground as those without the chemical imbalance. And that’s just it—it is a chemical imbalance. I take medicine just as someone takes insulin or heart medicine. Dr. Offutt has helped me see that I didn’t do anything wrong to get this label. It is what it is. The trauma of my mom’s death and Devon’s accident caused the illness to surface sooner than it would have normally. At least that’s what they say. I’m just happy I can go through days without crying or feeling sad. The guilt is still there and forever will be. Sometimes it’s the heaviness of the guilt that wears me down, but I manage it.
“Lacey?” Startled from my inattentiveness, my eyes flash to meet the doctors. Inhaling a quick breath, I steady my heart.
“Oh, sorry. I must have been daydreaming.”
“It’s okay,” he chuckles. We have a pretty good doctor-patient relationship now and I’m thankful for that. “You were going to tell me how you spend your days,” he reminds me.
“Yes, well… My days are spent painting backdrops for the children’s theatre productions.” I hesitate, draw my eyebrows, and ask, “I told you about partnering with two ladies to start a children’s theatre, didn’t I?”
“Yes, you did. From the images you’ve shown me, I can see that you’re a very talented artist, and this sounds like it is good for you.” I smile, happy he agrees.