Archive for the ‘Special Needs Children’ Category
Today my ClubMom topics, homeschooling and special-needs kids, come together. I’m taking Wonderboy to our local public school—yes! I said public school!—for a meeting and evaluation with the special education office, a speech therapist, and the district audiologist. Even though we plan to home-educate this child like all our others, we can and will avail ourselves of the special services made available to all children according to federal law.
From birth to age three, qualifying children can receive services such as speech therapy, physical therapy, and occupational therapy through Early Intervention programs. Wonderboy received all of the above, in our home, beginning at about four months of age. (For PT & OT, that is. When his hearing loss was diagnosed months later, we added speech & hearing therapies.) The first step in the Early Intervention process is an evaluation that leads to the writing of a big ole document called an IFSP—an Individualized Family Service Plan.
At age three, children age out of Early Intervention and from that point on, the special services they qualify for come through the local public school district. The IFSP gives way to a new document, the IEP, or Individualized Education Plan. The IEP spells out what services the child requires and how the district is to go about answering the need. The whole IEP process can be tricky to navigate, or so I’ve picked up from several friends (public-schoolers, not homeschoolers) whose older children were diagnosed with learning disabilities or autism spectrum disorders. Those parents had to be sharp-witted advocates for their children to make sure that all their classroom needs were being met.
For us, it’s a bit simpler. Wonderboy "graduated" from PT before we left Virginia (amazing, amazing! miracle boy!), but he will almost certainly continue to need some speech therapy during the next several years. His verbal language skills are growing by leaps and bounds—really, it’s so exciting; he’s using long sentences now, like when I hollered "Ladies! Dinner’s ready in five minutes!" and he BOOKED down the hall shouting, "GIRLS! Time to eat! Dinner!" Excellent progress. But of course since he still lacks most consonants, it sounded more like "GUH! I oo ee! Ginnah!"
I want to make sure he has every advantage. I know his verbal skills will continue to improve naturally as he gets older. But he may need extra help to master certain sounds. And so after we got settled in here, I called the district spec ed office to see what kind of speech program they have. After a lot of faxing (his IFSP and audiology reports) and phone calls—just the normal process!—we set up an evaluation with the aforementioned folks.
Today we’ll be meeting to determine what goes into his IEP. I’m going to blog the process, because I haven’t found too much else out there about homeschoolers and IEPs. I might hold off on attending the speech therapy sessions until next fall, depending on how today’s eval goes. At Wonderboy’s age (he’ll be three this week!), speech therapy takes place in small parent-child sessions at the school up the road. That sounds great—but I can already see that timing will be tricky. I don’t know that I want to chop up a morning once a week with a jaunt to speech therapy. That’ll monkey with my older kids’ schedule.
But we can figure out the logistics later. Right now, step one: the speech evaluation.
Don’t these people know they stand to make a lot of money off my family? Clearly no one in San Diego’s medical field is reading this blog. Humph.
(I must interrupt my own self to tell one of my MOST FAVORITE KID STORIES EVER. Rose was around three years old, and something, I no longer remember what, had disgruntled her. “Hmph,” she remarked to the general public. No one responded. This was not to be borne. In a loud and steely tone she asserted: “ME SAY HMPH!!”)
Okay. Doctors. That office I talked to last week never called me back. I gave them a week, then called a second time. It was like starting over: got a different person on the phone, had to explain the whole thing again, kid is going to need ear molds in a month or two, audiologist has two-month wait for new appointments, won’t schedule appt without scrip from doctor. New Voice said the same thing last week’s Voice said: “I’ll have a nurse call you back.”
Okey-doke. Time to try someone else. I go to our PPO’s website and pull up the list of local docs in the network. Big city, long list! I arrange it by proximity to our house and start dialing my way down the list. The following transcripts are not made up. After the second call, I started taking notes.
Medical office number one: Automated message. “You have reached the office of Dr. So-and-So. Our regular office hours are 8:30 a.m. to 5 p.m., Monday through Friday. If this is an emergency, please hang up and dial 911. Beeep!”
Check the clock: it’s 11:20 a.m.
Medical office number two: Recorded message. “If you need to reach a priest, press 1.”
Huh? Hang up, check number, dial again.
“If you need to reach a priest, press 1.”
All righty then.
Medical office number three: “Beep, boop, beeep! We’re sorry, you have reached a number that has been disconnected or is no longer in service. If you think you have reached this number in error, please hang up and try again.”
Hang up, check number, dial again.
“Beep, boop, beeep! We’re sorry…”
Mutter, mutter, grumble.
If this keeps up, I WILL need to call a priest. To make an appointment for Confession. These rassafrassin doctors’ offices are generating some mighty uncharitable thoughts.
Medical office number four: “You have reached the offices of the Thus-and-such Medical Group. Our office is closed for lunch between twelve and one p.m. Please do not leave a message on the voice mail. If this is a life- or limb-threatening emergency, please hang up the phone and dial 911.”
Me say hmph.
If I earned a wage for all the hours I’ve clocked on my kids’ medical issues, well…I’d be a case manager, not a mother. But I’d also be rich.
I spent this first month in California shoving to the back of my mind a looming dread over the necessity of Finding New Doctors. Oh, how this pains me. We had the most fabulous family practice back in Virginia. Excellent and attentive doctors, compassionate and capable office staff, kind nurses. I loved everyone there, really loved them! Even the lab tech who took my blood. I miss her. I miss the whole gang. Thanks to Wonderboy, we spent so much time in their offices we might as well have kept extra toothbrushes there.
Best of all, oh so marvelous, was Dr. H., whose name I’d like to shout all over the internet but if I did her phone would never stop ringing because SHE MADE HOUSE CALLS. She was the doctor I’d been looking for my whole life, or at least since Jane got sick in 97. Scott and I used to sit in the hospital lamenting the fact that no one in our families had married a doctor, because we could have really really used one in the family, someone to call up and say "Listen, there’s This New Weird Thing going on—do I haaave to haul the kid into the office? Or can this just be a wait and see?"
And then Dr. H. walked into our lives—through our front door!—and I swear I was like a sixth-grader all over again. Hi, you’re so awesome, will you be my best friend?
You want to know how awesome? When I told her I was going to be driving all five kids to California by myself, SHE OFFERED TO FLY WITH ME INSTEAD.
I almost took her up on it, but I was afraid I might accidentally lock her up in a secret room in our house and never never let her go. And she has kids of her own who need her. Humph. So when the time came, I hugged her goodbye and bawled like a baby all over her stethoscope.
And here I am, poring over our new provider directory, cowering at the thought of starting all over with some stranger. It’s like dating again after a bad breakup.
There really ought to be an eHarmony for finding doctors.
One pediatric practice here was highly recommended by several of our new friends. I took a deep breath and made the call, which felt like going on a blind date. Nice voice on the phone says that yes, they are taking new patients but the first available well-child appointments are in January.
I’m fine with that, as long as they’ll see us before then if someone gets sick. I’ve been burned this way before—some docs won’t see you for sick visits unless you’re already a patient. But these folks say, nope, not a problem, if someone gets sick we’ll get you in right away.
So, okay, it’s a start.
BUT. My next question was about finding an audiologist for Wonderboy. He needs new ear molds for his hearing aids about every six months. The current pair was made in late June. Already they’re getting a little loose; he’ll need a new pair in Jan or Feb for sure. And I know how these things work. We’ll have to have the new-patient visit to the audiologist too, with hearing tests, and then they’ll probably have us come back a second time to get the ear molds made. And then it’ll take a few weeks for the new molds to come in. Time, time, it all takes time. I’m an experienced case manager now and I know you have to anticipate the patient’s needs.
So the new pediatrician’s office recommended an audiologist. But THAT office says there’s a two-month wait for new-patient appointments there, too. And also? They can’t make an appointment for Wonderboy without a prescription from his pediatrician.
Me: "A prescription? Do you mean a referral? We have a PPO now; we don’t need specialist referrals as long as they’re in the network. Which you are."
Audiology office: "No, a prescription. For a hearing test."
Ohhhhkay. Right. Because, you know, there’s such a black market for hearing tests. Hearing test abuse, it’s a real problem in urban centers. Especially among three-year-olds. Their mothers are always trying to sneak in preschoolers with perfect hearing just to get a quick buzz off those intoxicating beeps and clicks.
I called the pediatrician’s office back. I told Scott it was a test: how they respond to this situation will give me a good idea of what has the upper hand in their practice: human need or red tape.
The first person I spoke with scored well. When I explained that I can’t wait until January (when our new-patient appointment is scheduled) to get the prescription because then it will be MARCH before the audiologist can see us, and probably APRIL at the earliest before we get new ear molds, and even though Wonderboy doesn’t need new molds now, he will certainly need them before April—when I (gasp, pant) explained all this, the Unnamed Office Person on the phone totally understood the problem. She took all our info and said she’ll have a nurse call back.
So now I’m waiting for round two. Meanwhile, I keep finding myself staring at the phone, with Dr. H’s number on the tips of my fingers. Chill out, I tell myself. They have good doctors in California too. I might call her anyway, because now that she’s officially not our doctor anymore, I am totally latching onto her claiming her as a friend. And if she ever does fly out here for a visit I promise not to make her give us all checkups.
Please read Moreena’s post about organ donation today. She writes:
Remember Jackson? I mentioned him in this post. (And I was wrong about his parents not having a webpage. Here it is.)
Last month his mother donated a portion of her liver to him, but
unfortunately he contracted a serious fungal infection in the hospital
that is quickly destroying his new liver. As of his mom’s last update,
the doctors only give him a 10% chance of survival without a new liver,
and soon.
I’m not sure what’s going on right now, but I know that there have
been an awful lot of very sick children that are dying still waiting
for donated organs.
Moreena goes on to make a passionate plea for people to consider signing up to be organ donors. I strongly encourage you to read up on this matter and give it your serious consideration.
My Jane is alive today because people donated their blood. (She had fifteen blood transfusions, including two complete blood exchanges, as well as so many platelet transfusions that I lost count.) She did not need a bone marrow transplant, thank God, which is a very good thing because when our hospital ran a check in the national bone marrow registry, they only came up with a single preliminary match. A very small percentage of preliminary matches turns out to be an actual match. She had no siblings at the time and was not a good candidate for an autologous transplant (a procedure in which the patient’s own bone marrow is extracted and cleaned of cancerous cells, then used for the transplant).
Bone marrow, like blood, is donated by living people. Even so, the marrow registry suffers a continual shortage of donors. Is that because people are hesitant to get involved, or because most folks just don’t think about it? I’m guessing the latter. And I think that goes even more for organ donation, because in order to make a decision about that, you have to contemplate your own death. None of us wants to do that.
Life is busy, and so often issues like this just whisk past us like signposts outside a car window. You catch a glimpse as you zoom past, and you think about how someday you really intend to come back and read that sign, visit that landmark. Should I stop now? No, the baby’s asleep in the backseat, and anyway, we’ve got to get moving if we’re going to get to the next hotel before dark.
Today, Moreena is asking all of us to pull over to the side of the road and read that signpost. If you haven’t indicated to your loved ones that you want to be an organ donor after your death, please consider doing so.
You may be choosing life for a child like Jackson.
For more information, visit shareyourlife.org.
Postscript: This morning I learned from Moreena that Jackson passed away on Saturday. Our prayers are with his family. He was at the top of the transplant list when he died.
1) We are both ClubMom bloggers. Did you notice? In the sidebar? There’s a new name in the MomBlog lineup: the Duchess Diaries. Sarah Ferguson—that’s right: Fergie—has joined the club. She is going to blog her adventures as she tours several countries for World Children’s Day to raise funds for the Ronald McDonald House Charities. (See #3.)
2) We have both made public appearances at the Country Glen Shopping Center on Long Island. Mine was a booksigning at the Barnes & Noble, and Fergie’s was (I think) at the Weight Watcher’s there.
3) We are both big fans of the Ronald McDonald House. I’m one of those people whose burden was made lighter, more bearable, by the existence of the sanctuary that is the Ronald McDonald House. And not just once: many, many times. When Jane was first diagnosed with leukemia in 1997, the RMH next door to her children’s hospital was the only place I could go to grab a shower. For nine months—nine!—I slipped over to the House a couple of times a week for a hot shower and a snack. The folks who ran the house always had fresh-baked cookies waiting on the counter, and there were large refrigerators stocked with milk and juice and all sorts of other things.
Families who were staying there long-term would cook dinner in the communal kitchen, using the groceries provided by the House staff, and everyone shared the leftovers. The House was a place of refuge from the overpriced fast food available in the hospital lobby, a place to do laundry, a place to meet other moms and dads and children who were going through rocky times themselves.
Rose was born in the summer of 1998, months after Jane had finished the high-dose, in-patient part of her treatment and we were back at home in our Queens apartment. But just four days after Rose’s birth, Jane spiked a fever and had to be re-admitted. She developed a serious case of pneumonia and wound up spending two weeks in the hospital. Two weeks! I felt torn in two. I was nursing a newborn and couldn’t leave her, but how could I stay away from my little Jane?
Up to that point, I had slept beside her in her hospital bed for every night of every admission. This time, it was Scott who stayed with her at night. I couldn’t bear to be too far away, though. The nurses reserved me a room at the Ronald McDonald House. Tiny Rose and I spent our nights there, just across the parking lot from Scott and Jane. Every morning I hurried next door to the hospital and spent the day bouncing between Jane on the cancer ward and Rose in a small library room just down the hall, where the bighearted nurses had fixed me up a little nursery with a rocking chair and bassinet borrowed from Maternity. And every morning on my way out the door, the nice Ronald McDonald House manager stopped me at the threshold and insisted that I grab a bite of breakfast before I took up my post at the hospital.
You see, the House is more than just a place to sleep; it’s a place where the families of sick children are nurtured, just as they in turn are nurturing their little ones. Scott and I stayed at another Ronald McDonald House in December of 2003, when our Wonderboy was born and surprised us all by requiring surgery right away. My folks were at home with our girls, and Scott and I found ourselves back on familiar ground, even though now we were in a different state. The room itself was a comfort to me. It reminded me of ordeals we’d survived before, and helped me believe we’d get through this one all right too. Because the House was just down the road from the hospital, I was able to go back and forth to the NICU every few hours to nurse my baby boy, and still manage to squeeze in a little much-needed sleep.
Some families must travel great distances to reach a good hospital, and paying for long-term hotel stays could quickly put them into financial peril. The extenuating expenses of having a child with serious medical needs can be frightful. At the RMH, families pay a nominal fee if they can afford it. It’s far less than a hotel bill.
And the House is far more than a hotel. There is peace and cheer within its walls. There is rest, and hope, and help.
That’s why I’m so glad to know someone like Fergie is speaking out on its behalf, and I’m proud to be in her company here at ClubMom.
No, it has nothing to do with the move. Remember when I wrote about Hank? Well, he’s home.
My speech-delayed son is in loooove with his voice. Words! When you use them, people react! Things happen! Words are MAGIC! For example, when it is one in the morning and you are feeling lonely, you can say MOM MOM MOM MOM MOM MOM and your mother will come and get you out of your bed and bring you into hers. She will do this because there is already one baby sleeping in her bed and she doesn’t mind being bookended by another.
But then it is possible she will (foolish optimist that she is) attempt to go back to sleep. This situation calls for more words. HI HI HI HI HI MOM is effective, as is BABY SLEEPING! (Even if you pronounce this as "Gaygee ee-ee," she will know what you mean.) This phrase achieves highly satisfactory results. She will instantly be wide awake and will pay lots of attention to you, rubbing your back and possibly murmuring hush sounds to you which you can’t actually hear because you don’t wear your hearing aids in bed.
Another aspect of Word Magic is the power to make people laugh. This is an extremely intoxicating experience and you will be eager to revisit it as often as possible. CLEAN UP, you will shout at your sisters, and this will make them howl. It will also cause them to leap into action, and rooms will become spotless before your mother’s very eyes. This garners the bonus payout of much beaming and hand-clapping from all the women in your life. You will feel like king of the world and probably won’t realize that you are in actuality the court jester.
Sometimes, however, your magical words will cause laughter where laughter seems contraindicated. You don’t see what is funny about asking for your BRUSHTEETH. A fellow needs to brush his teeth, after all, and what’s he supposed to use, his BRUSHHAIR? And when getting dressed in the morning, you fail to see what is so doggone amusing about requesting your HAM. I mean, you’ve put on your shirt, and the next logical step is to put on your ham, right? Are you supposed to go around barelegged all day?
Women. Sometimes they just don’t make any sense.
I’m going to throw this topic open for discussion, because I am certainly no expert here. I am learning as I go. (Which is pretty much the definition of parenting.) I know from talking to other mothers of kids with special needs or medical issues that it can be really challenging (understatement) to figure out what behaviors are caused by the child’s issues, and what has more to with age or temperament. Of course these things are never black and white; there is usually a variety of reasons for why a child is doing something you’d rather he didn’t do. Deciding how to address the problem is the big challenge.
I remember an incident from when Jane was two, during one of her prolonged hospital stays for chemo. Most of the time she was astonishingly cooperative during treatment, but on this day she was emphatically not happy. "Not happy" as in shrieking her lungs out in the middle of the hall. In a flash we were surrounded by about seventeen medical personnel wearing expressions of worry and alarm. Was she seizing? Had she pulled out her line? I remember kneeling beside Jane, looking up at the army of doctors and nurses, explaining to them that no, it’s just that she’s two.
What had happened was that I (gasp) said no to her. No, you can’t sprint down the hall when you’re attached to an i.v. pole. She was two years old and in the mood to sprint, and her tantrum had nothing to do with her illness at all. It could just as well have happened in a grocery store or at church. She just happened to be spending her toddlerhood in a hospital, and when toddler ‘tude kicked in, it happened in a place where the staff was trained to assume screaming and flailing of limbs indicated a medical emergency.
I can see how they made that mistake. These things are not always clear cut. My Wonderboy is a sweet, sweet child. But he’s also, shall we say, a bit rigid. And determined. That determination serves him well; after all, it’s what got him off the floor and onto the furniture. But he is two and a half, and his goals are not always quite as satisfactory, from my point of view, as, say, walking and climbing. And often I find myself navigating difficult and uncharted waters. If he’s doing something inappropriate, how much has to do with his issues (I sort of hate that word) and how much with his age, or his mood, or circumstance? That’s a rhetorical question, you understand. No one can answer it for me. The answer changes every day, with every situation.
But the challenge is consistent, and I think it’s a challenge faced by a lot of parents. Wonderboy grows daily more fluent in two languages: English and ASL. But there are many times when he refuses to use either one. He’ll sit in his chair and reach toward the fridge making totally obnoxious fussing sounds. This is not OK, I tell him. Use your words. Do you want some yogurt? I have my strategies for retraining this inappropriate behavior: I sign his choices (he can’t hear me when he’s fussing); I refuse to give him anything if he fusses for it. ("Inappropriate behavior gets you the opposite of what you want" is one of my basic principles of child-rearing.) Fussing that escalates to a tantrum gets him plopped in the playpen penalty box. (At least, it did until I packed the playpen away for house-showing. Now I use his bed.)
But during such lovely little episodes, of course I’m wondering how much of his behavior is bad habit in need of retraining, and how much is the big old frustrating communication gap that goes along with hearing loss, which will be less of a hurdle as he gets older.
I’m just using that scenario as an example of the kind of thing I mean. Before he was able to stand up, he’d sit and cry or shriek for someone to get him. Of course I felt sorry for him, stuck there, dependent on someone else for mobility; I couldn’t leave him crying on the floor. But neither could I allow him to think the way you get what you want is to scream for it. I had fears of raising an imperious, obnoxious little tyrant who thought his physical limitations gave him carte blanche to order people around, like Colin in The Secret Garden.
So day after day—hour after hour, it sometimes seemed—I worked with him, insisting that he sign "help" before I’d get him up. Sometimes I felt so mean. Sometimes it went on too long. Sometimes we had to BE somewhere, or one of his sisters needed me, and I had to just grab him and go—which, of course, is just the kind of inconsistency that delays the formation of the good habit. But little by little, we got there. He learned to ask for help. Nicely.
And I know he’ll learn to ask for yogurt, nicely. It just takes so much diligence on my part, and that can be exhausting—the need to always be focused, to be thinking about how I react rather than simply reacting on autopilot.
As I said, I know I’m far from the only mom in this boat. So I figured I’d open the topic to you all and see if it’s a subject you’re interested in pursuing. I’m not all homeschooling and fun learning stuff here; I’m special-needs kids too. (And also: large families. And: big scary cross-country moves. But I digress.) I would love to hear your stories and insights about raising kids who pose behavioral challenges on top of the regular challenge of being, you know, two years old. (Or three, or four, or five…)
Exactly two months ago, you shared our joy over this: a two-and-a-half year old boy who was finally able to stand up by himself.
Today we are celebrating THIS. That’s a long way to come in a pretty short time. Climbing! The furniture! It’s hard to believe he was the baby who had to wear splints on his legs to straighten them out.
Hundreds of hours of physical therapy? Priceless.
