Hungover

I have used the term “hospital hangover” before. It’s a feeling of being worn down, a little depressed, completely frazzled, and unreasonably exhausted. It takes days to shake the hangover after a hospital stay. The longer and more stressful the stay, the worse the hangover.

Having a sick child is incredibly stressful. It is terrible to know your child is very, very sick and be unable to help. When Gracie was in the hospital last week, she was very, very sick. She spent the first three days of our hospital stay experiencing high fevers that made her miserable. Even though she doesn’t feel pain in the normal sense, she aches when she’s fevering. She says her neck hurts, her arms hurt, her legs hurt, her feet hurt, even her eyes hurt. These descriptions of the body aches that accompany fevers are familiar to us all. Additionally, she moans and writhes while the fever is climbing. I know now to medicate her as soon as she starts moaning, but there is still usually at least an hour of moaning and writhing uncomfortably before the fever spikes and she stops moaning. This is the hardest hour—for both of us. I hold her and comfort her as best I can while she moans and writhes, but there is nothing I can do to really help. It takes longer for the medicine to take effect than for the fever to climb, so unfortunately she must spend an uncomfortable hour aching and writhing before she gets any relief at all.

It hurts my heart to see her like that. It is scary and stressful and horrible, and there is nothing I can do to make it better for her. Then, there is the knowledge that these rigors (a/k/a fever shakes) indicate a severe infection—how bad is it? How long will it take to get the infection under control? Will she get through it and be okay on the other side?

In the case of this most recent infection, it took three days of the wrong medication, arguing with doctors, and an eventual switch to a stronger antibiotic before the fevers subsided. This adds the worry of whether the infection will worsen until it’s out of control, and the worry of how to get my child the care she needs when the doctors won’t listen.

It’s all very stressful.

Days of a flight-or-fight response, a/k/a the stress of having a kid in the hospital, leave a mark. THAT is the hospital hangover. I am one frayed nerve away from completely losing it. I could use a vacation, except it was cancelled so we could stay in the hospital. I could use a hug from my guru, Amma, except apparently she didn’t want to see me this year. (At least, that’s how it feels.) I could use at least a day off work, but instead of getting a break I’m working extra to make up for time out of the office, and taking lots of flak from people who don’t realize how very fragile I feel. They have no idea that one snarky comment could send me over the edge.

This all sounds like a lot of whining, and for that I am sorry. It should be about Gracie, and it is, but it’s about all of us, too. After the heat of the moment passes, the emotions hit. When we are in the fire we simply act—we get through the flames as best we can. But the embers smolder still after the flames subside. The emotions continue to burn even though her physical problems are under control. In fact, the emotional damage only flares after the fact. THAT is the hospital hangover.

Gracie is doing better now. Her knee is still warm but not hot. There is still some swelling, but the redness is gone. The medicine is working. The fiery fevers are long gone; she has not had a fever since she switched medicines. The crisis is over; the flames have been put out.

And now is the time that our emotional damage surfaces. This is the hospital hangover. Like a traditional hangover, it won’t last forever, but it sure is hard to deal with when we’re in the throes of it all.

So, if you see me or Chad, say a kind word. Save your complaints about our work product until next week. Understand that we’ll get through this, but for now, we’re fragile. We’re hungover.

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The White Prison

It’s hard to make plans when you have a special needs child. Their diseases are not predictable, so any vacation/date night/concert plans have to be tentative until they actually begin. Many times over these 6+ years, we have had to cancel plans because Gracie was in the hospital or very, very sick. It can be extremely frustrating for all of us.

We don’t have a lot of vacation plans for this summer, but we had a flurry of activity planned for the beginning of June. Chad makes a yearly service trip to the Pine Ridge Indian Reservation in South Dakota, where he works 18 hour days making dentures and other dental appliances for the people who live on the reservation. I was scheduled to represent my company’s publications department at a legal education conference in Vail. Of course, these two trips overlapped, so I agreed to take the kids (it’s much easier to have them in a fancy hotel with me than spend long days in a hospital dental lab with dad). When we got back from Vail, we would have a few days at home before leaving for New Mexico to see my sweet sister (a/k/a the kids’ favorite Auntie) and attend a program with Amma.

The first week of June went off without a hitch. Although the event was not kid-friendly, the children did a great job keeping themselves occupied while I manned the books table. We spent a lot of time in the hotel’s two pools and three hot tubs as a reward for the kids’ good behavior. It was a lovely hotel, and we had a good time despite working.

We got back Saturday night and started planning for our trip to New Mexico. I would work all day Monday, but had Tuesday off to pack and prepare, and then we planned to leave early Wednesday morning. I was working late Monday evening in order to get everything done before vacation when Gracie said her knee hurt. I glanced over and gasped — her right knee was bright red and hot with infection.

Even though it looked too red to be treated with orals, I still intended to go on our vacation at that point. I texted Gracie’s doctor to ask if I could start Keflex — our emergency antibiotic — and bring her to the clinic in the morning. The doctor agreed, so I gave Grace a dose of the medicine and stuck her in the bath to soak the knee. I had plans to hang out with my sister-in-law’s sister that night, so after getting Gracie out of the tub and dressing her knee, I left.

Chad texted me about an hour later that Gracie was moaning and thrashing around in her bed. This is a sure sign that she’s about to spike a fever; my heart fell. All hopes of vacation went out the window at that point — fever + infection = hospital. Grace continued to spike every three hours overnight. This was a serious infection indeed. Instead of spending Tuesday preparing for vacation, I spent the morning preparing for a hospital stay. We left for the ER after I showered and packed a bag.

The ER doc added a different antibiotic called Clindamycin to the Keflex Gracie had already started. I was concerned about the drug choice, since neither works well for Grace anymore, but agreed in hopes that we could switch to orals quickly with either option. (I still thought we could go on vacation. Silly me.) When we got to the floor, the infectious disease specialist, Dr. PC, came to the room to check on Grace. I expressed my concerns to Dr. PC about the medicine choice, but he disagreed. He felt like Keflex and Clindamycin provided broad-spectrum coverage for staph and strep, the two most common bugs. He contemplated adding Levoquin, another drug that is only so-so for Gracie, but decided to wait 24 hours before doing so. Levoquin provides coverage for a bug that can live in hot tubs.

Gracie continued to worsen at the hospital. Her fevers spiked high and she was miserable, moaning and writhing in the hospital bed. Poor sweet girl… it hurts my heart to see her like that. I kept telling doctors and nurses that I didn’t think the medicines were strong enough for her, that she’s had them too many times already and doesn’t respond to them, but to no avail. The doctors added Levoquin on Wednesday, so Gracie was getting three mid-level antibiotics rather than the one that would have helped (Daptomycin) that I kept requesting. It is SO FRUSTRATING when doctors won’t listen. Dr. PC in particular did not seem to think that Daptomycin would be necessary, but agreed to check again in 24 more hours to see if the Levoquin had helped.

Thursday morning, I awoke at 5:45 am to all the lights on and two nurses standing over Gracie, chatting and drawing blood. My nice-filter was off — I chewed them out for waking her up that way. Their explanation was that the doctors want the night nurses to draw blood so the results would be available by the time they got in. So, waking a kid up at 5:30-5:45 is for the doctor’s convenience — ARGH!!! It was not a great way to start the day. As the nurses left, they cheerfully told Gracie she could go back to sleep. Apparently they don’t understand her (or most kids) at all. Of course she was awake for the day. Who wouldn’t be, at that point?

The day did not improve from that point. Gracie shattered her iPad screen (it’s kind of a miracle that it hadn’t happened before), she sprayed perfumed body spray in her eye, I found out her blood work showed that her infection markers had risen, and then Dr. PC came in. Again, I stressed to him that Keflex, Clindamycin, and Levoquin had all been given to Gracie many times over her life, and they simply were not effective anymore. I again pleaded for him to switch to Daptomycin. He refused, saying that Dapto is for resistant infections and he absolutely would not give it to her, and that his partner would not either. He left the room and I burst into tears. We were going to be stuck in the hospital for indefinite days with doctors who refused to listen to the Gracie-specialist — me. I may not have gone to medical school, I may not see sick children every day, but there is NO ONE in this world who knows more about Gracie than me (well, maybe other than Gracie herself).

The nurse came in while I was crying and he, too, was upset that Dr. PC hadn’t listened to me. He called the patient advocate and went out to talk to the hospitalist — the floor doctor. The housekeeper, a wonderful woman from East Africa, sat with me and chatted. She, too, has a special needs son, and she reminded me that tears wouldn’t help but anger might. I am not really a person who expresses anger to strangers, though; I’m much more likely to cry than to yell. She chided me to wipe away the tears and be strong. She is a wise woman. I composed myself and went back to work on my computer. (What else do you do when you’re stuck in a hospital room all day? I actually had a very productive work day yesterday, despite everything.)

Before long, the hospitalist came in. He sat down and had a long conversation with me. I explained to him what I’d told Dr. PC — that Gracie has had Keflex, Clindamycin, and Levoquin many, many times in her life, and they simply are not effective for her anymore, at least not on more severe infections. I asked him to think of her as a 90-year-old cancer patient instead of a 6-year-old. He said, “Well, I don’t have 90-year-old cancer patients, but I do have 9-year-old cancer patients, and I would use Linezolid for them.” Linezolid is one of the drugs Gracie has had before also; it does work for her and is a step up from Keflex/Clindamycin. He was concerned that if we went to Dapto, we would have nowhere else to go. I agreed, and noted that each time she gets a drug it is a little less effective for her, so we need to save Dapto for times when nothing else will work. After about 15 minutes or more of actually listening to me and formulating a plan together, the doctor agreed to change Gracie’s antibiotics. He would keep Levoquin to address any possible gram-negative bugs that live in hot tubs, but switch from Keflex and Clinda to Linezolid.

I was cautiously optimistic that this plan would work but also worried that we’d farted around for too long without adequately treating the infection properly. Even though the three antibiotics weren’t working well enough to cure the infection (obviously, since her fever and the redness continued to worsen), they were helping a little — they kept the infection from exploding and instead kept it to a slower crawl. Gracie got one dose of Linezolid yesterday afternoon and one dose overnight.

Today is Friday. We have been in the hospital since Tuesday morning. But I’m happy to report that today her leg has noticeably improved. YAY!!! It is the first day she hasn’t worsened. The redness is significantly less pronounced and she feels like her normal temperature. Her knee is still hot but that’s to be expected. No fevers and less redness means the drugs are working. Hallelujah! I’m so relieved. She will probably be able to go home tomorrow, and maybe today if the docs really want to get rid of her (we haven’t seen them yet this morning).

The moral of this story is that doctors really, REALLY need to listen to parents. We may not have medical degrees, we may have learned the medical lingo as a second language, but we are the experts in our own children. I’m grateful to the floor doc for really listening and for changing his plan based on my input. I’m worried about our continued relationship with Dr. PC; I don’t know if we can work with him again, and infectious disease is a specialty we need to have a good relationship with. We may switch back to the adult infectious disease specialist who saw Gracie in the interim between Dr. D and Dr. PC; I don’t know, though, if she’ll even agree to see a pediatric patient. We may just wait and see what happens before making any decision. But for now, we are on the right path. Thank the good lord.

 

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Hoppy Easter!

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Hoppy Easter to all my peeps!

Today is Easter, and the kids have been enjoying the day. I mean, who wouldn’t love candy for breakfast, amiright?!

Gracie woke up first, at around 6:45. I helped her go to the bathroom, and while we were in there she immediately spotted one of the four plastic eggs hidden in the room. (Okay, maybe it’s a little gross to have eggs in the bathroom, but I wanted to expand the egg hunt this year and knew they’d immediately spot those eggs.) As she stood up and hung onto me so I could pull up her pants, she spotted another egg behind me. What she didn’t spot was the third egg, which was only about a foot to the right of the egg behind me. Her vision loss prevented her from seeing the full picture of the room.

As we left the bathroom, Gracie put her hand right on one of the eggs lining the railing in the hallway, but between her vision loss and the lack of sensation in her hands, she didn’t even notice. It’s hard to imagine not being able to tell whether you were grabbing a wooden railing or a plastic egg, or not being able to see the brightly colored egg, yet that’s what happened for her. She didn’t find the eggs on the railing until I pointed them out to her. (She thought they were pretty awesome once she saw them, though. She swept them all off the railing and into her basket in one fell swoop.)

Traditionally, the egg hunt has been challenging for Grace due to her vision loss. Retinitis pigmentosa has been described as causing “Swiss cheese” vision, with spots of clarity and spots of missing data. The brain will fill in the blanks in vision, allowing people with RP to seem to have better vision than they really do, but the image the brain fills in is not actually the image that is there. Easter egg hunts highlight this difference.

Jackson has his mom’s eagle eye. He immediately spots differences, and is an excellent egg hunter. He did a great job this morning. He even found the well-hidden eggs. Gracie, on the other hand, was great at finding the obvious eggs but would pass by some that were right in front of her, missing them due to Swiss cheese vision holes. (I had asked Jackson early on to concentrate on the harder eggs and let her get the easy ones, and he cheerfully obliged. He feels honored to be the one capable of the harder tasks.)

It doesn’t bother Grace that she misses visual cues. She declared herself the winner of the indoor egg hunt, and did really well outside, too. She stopped hunting eggs outside prematurely, though, to swing. As she swung back and forth, she exclaimed, “I’m an EGG-celent swinger!” She sang a happy song about beautiful Easter mornings and fun happy times. She put on some fuzzy bunny ears and declared, “Easter is my favorite time of EAR!”

Poor vision has not harmed her wit and intellect. Gracie doesn’t need to be able to find all the eggs to enjoy the holiday. I don’t need her to find all the eggs, either. That’s what my little eagle-eyed buddy is for. Together, we make a great team.

Happy Easter, everyone! May you enjoy your day and have lots of egg-celent adventures.

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Slap in the Face

Most of the time, we barely notice Gracie’s disabilities. They are part of her, and part of our everyday life, and so much part of the routine. Once in a while, though, they reach out and slap us in the face, reminding us of how different she really is.

We just got home from a fabulous spring break trip to California. It was everything we needed and wanted it to be—full of great times with family and fun in the cool California spring. We all needed the rejuvenation.

Mostly, Gracie fit right in in California, too. Her cousins are familiar enough with her to not be shocked at her differences; it seemed that they, too, barely noticed them. She is accepted as herself, which is absolutely lovely. One incident, though, reminded us all that no matter how much we want it, she cannot just be a normal kid.

The kids begged all week to go “swim” in my brother’s hot tub. He keeps it at a balmy warm-swimming-pool temperature, and it is essentially my niece’s personal swimming pool. We were finally able to go swimming on our second-to-last night in California. The three kids (my two and my niece) were gleefully splashing in the lukewarm water for quite some time. Eventually, the kids all decided it was time to get out, Gracie last of all. When she got out, we had an instant reminder of her differences—Gracie’s legs were abraded from the knees down, blood trickling out at various points where the abrasions broke the skin. She, of course, had no idea.

We took her inside and gave her a quick bath, then I dressed the wounds with some of the fancy wound care supplies I brought with (packing is a different sort of beast for us). It was challenging to figure out how to bandage the wounds; they were so large that it was hard to dress them without having to tape over other wounds. Wound care is a specialty of mine, though, and soon she was fixed up and ready to play.

The brother at whose house this happened is no stranger to blood and guts; he is a paramedic and his wife is a nurse. Still, the sight of his young niece abraded over so much of her body with no knowledge of the wounds was shocking to my sweet brother. He had a slap-in-the-face moment—a moment when he realized what we live with on a daily basis—and it broke his heart a little.

It broke my heart, too, but not until the next day, when we had to cancel our trip to the beach in order to keep her wounds clean, and again the following day, when we were in the hotel and I couldn’t allow her to swim in the hotel pool (always the highlight of every kid’s hotel stay) because of the possibility of more abrasions or infection.

These little heartpangs are infrequent but they hurt the same amount every time. I like to tell people that we feel all the pain she doesn’t—the difference is we feel it in our hearts. It hurts to see a small child with her toenails partially ripped off, who has no idea she’s bleeding until she sees the blood, who has red angry wounds from the knee down on both legs and doesn’t know it. It’s a major slap in the face.

We had another slap-in-the-face reminder of Gracie’s differences right before our trip. Starting with the last Monday in February and continuing to the weekend before we left, Gracie had recurring fevers. She would spike fevers every few hours, shaking and moaning as her temperature rose. Motrin and Tylenol brought the temperatures down temporarily, but could not eradicate the cause of the fevers.

We made several trips to the pediatrician’s office and one trip to the ER during this two and a half week period. Each time, the doctors would look in her ears and throat, check her lungs, palpate her stomach, and find no answer. She had strep swabs, blood tests, urine tests, and a chest x-ray, but nothing returned any results. “Probably viral” became dreaded words of non-answer.

Fevers happen because of infections. Sometimes those infections are bacterial and other times they are viral. Bacterial infections can be treated with antibiotics, but viral infections must be allowed to run their course because modern medicine still cannot effectively fight them.

Normally, infections are very painful, but not in Gracie. She does feel some pain sometimes, but she lacks the ability to accurately quantify the pain. When she broke her wrist, she told her helper that it hurt, but she said it nonchalantly, as someone would remark about a chilly breeze rather than two broken bones with three fractures total. She has had numerous painless infections in her fingers, she has had painless urinary tract infections, and she has had a painless kidney infection. We cannot trust that she would feel an infection if it were painful enough; she has proven that she would not.

This is scary because certain infections, like appendicitis or meningitis, have no symptom other than pain at first and can turn life-threatening very quickly. If the appendix bursts, it will spew infection throughout the abdominal cavity, which can cause sepsis and, ultimately, death. Normal people feel intense pain with appendicitis. We have all seen images of people doubled over with appendix pain—a few of us have even experienced it. I cannot confidently say that Gracie would feel that pain. I am not sure if she would feel anything, and even if she did I doubt she could quantify it. She may nonchalantly remark that her stomach hurts, but she would not be doubled over in pain. This is the stuff of mommy nightmares—would I know something was wrong? Would I be able to get her help in time? Or would I just wait and see, not finding any other clues until it was too late? The recurring fevers brought me panic, and it was miserable to have to trust that the doctor probably would have found an infection if it was there.

Fortunately, both of these slap-in-the-face moments ended happily. Gracie’s fevers eventually broke, and her illness was indeed probably viral. Her legs are healing nicely—only one of the wounds looks less than perfect, and I’m keeping a watchful eye on it. So far, I think she will heal fine on her own without antibiotics.

And Gracie is back to her normal environment, where her differences are so much a part of her as to be unnoticeable.

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Fever

You give me fever
When you kiss me
Fever when you hold me tight
Fever in the morning
Fever all through the night.

I’m wishing I were writing a love song instead of a post about Gracie’s recurring fevers. Alas.

On Monday, Gracie called for me overnight. It was about 1:30 a.m. When I went in her room, she was shaking and moaning and writhing around in her bed—familiar signs that she’s about to get a fever. I stumbled to the kitchen to find the thermometer and fill a syringe with medicine. We have done this many times; I don’t need to wait for the temp to climb to know it’s coming. She gets the medicine right away now, even if she doesn’t have a fever yet.

When she stopped shaking around 2 or 2:30, her temp was 102. Not the highest fever she’s ever had, but not insignificant either. She was asleep, so I went to bed, worrying about how I’d manage my work meetings that were scheduled for the next day while caring for a sick child. (It all worked out. I worked from home Tuesday, but went into the office at 3:30 for the evening class.)

Gracie continues to have fevers. She is repeating a cycle: fever, medicine, repeat. The fevers are not terribly high—that 102 was the highest one of the illness—but they keep coming back. I took her to the pediatrician Wednesday, but got no answers. Grace’s ears, throat, and lungs are all fine, and there are no obvious skin infections. She is congested and has a thick cough, but not pneumonia. Her doctor advised that it’s probably a viral infection and decided to wait before doing blood work or checking urine.

When Gracie woke up this morning (at 5:30 – about an hour and a half earlier than usual), her temp was 100.5. It’s barely high enough to qualify as a fever for medical purposes, but it’s enough to let us know something’s cooking in her body. I emailed the doctor to see if we should come in today or wait until Monday; she has not yet responded.

I have never known a viral infection to cause recurring low-grade fevers. In my experience, viral infections usually hit hard and fast—they cause high-grade fevers that don’t respond well to medicine and go away after a day or two. Bacterial infections, though, are a different story. They start with low-grade fevers and ramp up over the course of days until they are barely controllable. This infection isn’t following either course. It never hit particularly hard, and hasn’t ramped up.

I know the signs of a medical emergency; I know what to look for and when to take her to the ER. However, I don’t know what’s going on inside Gracie’s little body, and that is nerve-wracking. Where is this mystery infection??

Time will tell. It always does. She will get better, stay the same, or get worse—those are the only three possibilities. Only one of those possibilities is good, though. The other two are stressful and potentially disastrous. It is horrible to have to wait for an infection to manifest, knowing that by the time we figure out where it is it could be very serious.

But for now, we have no choice. We will wait for this beast to rear its ugly head—or retreat. Hoping for the latter.

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Appropriate

Today, the United States Supreme Court heard oral arguments in a special education case, Endrew F. v. Douglas County Public Schools. In that case, the Supreme Court is tasked with deciding whether the student, Endrew F., received a free and appropriate public education (FAPE) as required by the Individuals with Disabilities Education Act (IDEA).

Endrew F. was a student at Douglas County Public Schools in the Denver-metro area. He has autism, and was on an IEP (individualized education program). For those of you who do not live in this world of special education acronyms, an IEP is basically the plan that the parent and the school put together each year to define the accommodations and modifications the child will need in order to get through the school day and hopefully learn. IEPs have goals for the child. For example, Gracie’s goals include things like maneuvering her walker through doorways without having to be reminded about the wheels.

Anyway.

Endrew F.’s IEP had very minimalistic goals that he was meeting, but they did not bring him closer to the academic level of the other kids. He was falling more and more behind each year. In his Fourth Grade year, Endrew developed behavioral problems, which escalated through the year and became severe by the spring. The school and Endrew’s parents disagreed about how to best accommodate Endrew’s needs in the school environment. Endrew’s parents requested a behavioral intervention, and the school district eventually scheduled a meeting with a behavioral specialist, but the meeting never occurred. Endrew’s parents withdrew him from the public school in April of the school year and enrolled him in Firefly Autism, where he is now thriving.

This is where it gets interesting. Endrew’s parents billed the school district for the cost of enrolling Endrew in private school, arguing that he was denied a FAPE. The district, of course, did not pay. The parents engaged in the administrative review process, where the hearing officer determined that because Endrew was meeting his IEP goals he was receiving “some educational benefit” that was more than de minimus – more than nothing. The parents appealed, and the 10th Circuit upheld the hearing officer’s decision that even though Endrew was falling more and more behind his classmates, he was making some progress, so he was receiving a FAPE. The 10th Circuit seemed sympathetic to Endrew’s plight but did not have a remedy for him.

I read through the whole transcript of the Supreme Court’s oral arguments. It seemed that the Supreme Court, too, was sympathetic to Endrew – the Court seemed to acknowledge that it would be crappy to say that because he received more than no benefit he received a FAPE. However, the Court didn’t have much of a remedy to offer Endrew, either. They were practically asking Endrew’s lawyer for a solution, and he didn’t really have one to give. His amicus (“friend of the court”), the U.S. Solicitor General, offered to the court that most children would be able to perform at or near grade level, but for those who would not be able to perform, the standard could be “significant” or “meaningful” progress toward grade level.

The Supreme Court Justices can be rather harsh toward those who appear before them. It was stressful to read the interchange between the lawyer for Endrew F.’s family and the Court; the Court seemed to be pressing him for a solution to the problem and he did not propose one. The interchange between the Solicitor General and the Court was slightly better; clearly, he is familiar with the court and is comfortable interacting with the Justices. Likewise, the interchange between the lawyer for the school district was less stressful; the Court grilled him and did not appear sympathetic to his argument that the lower court did the right thing.

Why, you might ask, am I giving a detailed analysis of the Supreme Court’s oral argument in this blog? Well, two reasons. First, I’m a legal nerd at heart and need an outlet to voice my opinions about this case. Second, and more importantly, I’m Gracie’s mom and I already knew about FAPE and IDEA and IEPs long before this case came down. That’s the world we live in, the world of special education and politely fighting with educators and schools. Oh, I’m sorry, it’s called ADVOCATING.

We have already been through a lot with schools, more than most parents of 6-year-olds. That whole debacle with Anchor Center taught me the uglier side of schools, and the limitations on the willingness of private schools to care about children who don’t fit their profiles. It also taught me that advocating for my child is one of my inherent strengths. You would think it would be a strength of any parent, but that is not actually the case, surprisingly.

Then, at Fletcher Miller we learned the other side of schools. All of the special education teachers we dealt with at Miller were amazing. I can’t say enough good things about them. They set Gracie up to succeed in elementary school by including absolutely everything in her IEP that could help her – they even thought of things like using larger manipulatives for math (little cubes to help kids count) and giving her a chair with arms so she wouldn’t accidentally fall off. Miller was our first IEP experience, and I have to say, it was a very good experience. Gracie’s Miller teacher accompanied me to the IEP meeting at her current school before her kindergarten year, and helped explain to the IEP team what assistance Gracie would need to get through the school day.

Gracie has an IEP in place for this year. There are goals on her IEP, but they are focused on gross and fine motor tasks, the areas in which Gracie has the greatest delays. She does not have cognitive difficulties, so her IEP goals do not cover academic substance.

Even so, the Endrew F. case could affect her. If Endrew F. loses at the Supreme Court, the law of the land becomes that a school need only provide “some educational benefit” that is more than nothing. Anything more than nothing counts, as stated by the 10th Circuit, and that is terrible. Children could get left behind, and their parents would have no recourse except to pay for private schooling (IF they could find it) at great personal expense. Gracie is one of the lucky ones – her disabilities are physical. For children like Endrew F. who are difficult to educate and unable to voice their own feelings, the road could be more rocky.

More than nothing is not much. Let’s hope the Supreme Court does the right thing and finds a way to provide Endrew F. and all other special education kids in the U.S. with the free and appropriate public education they deserve.

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Perseverence

Right before Thanksgiving, Gracie was lamenting that she’d never seen a movie in the movie theater. I had never taken her because it’s dark and loud and requires sitting still for two hours—any one of those things is usually too much for Gracie. She begged and pleaded, promising she wouldn’t be scared and would be able to sit there for the whole two hours.

I of course relented, being the permissive parent that I am. Gracie decided she wanted to see “Trolls.” She had been watching a music video on YouTube of one of the songs, “Get Back Up Again,” and knew most of the words by heart. So, on the Friday after Thanksgiving, Grace and Jackson and I trekked to our local movie theater to see this movie Gracie had been watching about on YouTube Kids.

It turned out to be a great movie—very cute and with a great message. Princess Poppy troll   embarks on a journey with survivalist troll Branch to save their friends from being eaten by the bergens, a miserable group of beings whose only taste of happiness comes from ingesting the vibrant trolls. It’s a kids’ movie, so of course it has a happy ending. It also has a lot of great music, from Simon & Garfunkel’s “Sound of Silence” to Justin Timberlake’s upbeat “Can’t Stop the Feeling” to Earth Wind & Fire’s “September.” But a highlight of the movie is the catchy tune that Gracie already knew, “Get Back Up Again.”

Gracie sang that song around our house for days before and after the movie. She would belt it in her best breath-support voice, doing arm movements for certain parts and grooving through others. I thought she only liked it because it was a fun and theatrical song to sing. I was wrong.

A few days after the movie, Gracie was wandering around the house singing her favorite song when suddenly she stopped. “Daddy, do you know why I love that song?” she asked Chad. “Because it has a really good message. It’s all about not giving up.”

Wow.

We were in awe. Once again, Gracie amazed us. She understood the deeper message of the upbeat tune. Our impish little child with the angelic blonde curls and the missing teeth once again taught us a lesson about strength in the face of adversity. The child who I was worried would be afraid in the dark theater was simply awaiting her opportunity to hear HER song, the song that could have been written about her life. (We coached her ahead of time about being quiet in the theater; she still sang along with the song, just not at the top of her lungs like she does around the house.)

Gracie is the queen of not giving up. She doesn’t think twice about it—if she wants something, she gets it. Self-sufficiency is second nature to her. This is the kid who shouldn’t be able to walk, but figured it out anyway. The kid who got her own pacifier even without the use of her hands. The kid who, when she broke her right hand this summer and lost the use of her fingers while they were casted, learned how to write with her left hand. The kid who falls and falls and falls and falls and falls, but never cries—she just gets back up again.

We could all learn a lesson from Gracie. Except, that kind of strength through adversity cannot be taught. It can be learned, but it comes from within. Gracie is just a little kid, but she already knows what it takes a lifetime for some of us to learn. She has always known. She is grace personified, amazing grace.

And when they knock, knock her over, she will get back up agaaaiin.

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