| Chapter 14: Our First IEP |
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Today Cheryl and I took Rose to see Dr. Greenstein, her geneticist. He had last seen Rose just after her first birthday. We all settled into a small medical examining room, Well, ok, Cheryl, Dr. Greenstein and I settled into chairs, Rose started exploring. She’s been in so many doctors’ offices that for her they are just another interesting place to play. Dr. Greenstein asked us if we had any special concerns. Cheryl mentioned Rose’s recent thyroid test results and her ankles turning in, over-pronating, particularly Rose’s left ankle. I mentioned Rose’s bouts of colds and sinus infections over the last winter, pretty much one right after another. Dr. Greenstein wrote down some notes on our comments as we spoke. And then he started on filling in a general history on Rose, trying to build a complete picture of how Rose is doing developmentally. He asked us questions, mostly Cheryl, I was busy chasing Rose around the examining room;
Dr. Greenstein finished taking a history from us and then he sat Rose on the examining table to take a look at her. No surprises, everything looked fine. He did take some more measurements, height and head circumference to go with the weight measurement taken on the way into the examining room. Rose is way down on the small end of everything for the growth charts for regular kids. For girls with DS she’s at least on the chart. She’s above 50% for height, just below 50% for weight and head circumference. Rose is definitely a tiny little peanut. Her small size is a cause for some concern but I think in this case it helps to have the experience of having older children; both Erin and Katie were very small for their age, especially when they were younger through the first few years of school, and they’ve done well, both academically and athletically. (For more info on growth of children with and without DS go to www.growthcharts.com) Dr. Greenstein got back to the three concerns we listed at the start of the examine. First, we talked about the results of initial check on Rose’s thyroid. Dr Greenstein explained, the TSH levels are actually a measure of the health of the pituitary gland which can influence the output of the thyroid gland. He recommended a second round of blood tests that would give a more direct assessment of the thyroid output. Next we talked about Rose’s long list of colds and sinus infections over the last winter, actually more like last six months. Dr. Greenstein said that Rose’s immune system may be compromised by low zinc levels. It’s a fairly rare condition but slightly more common in people with DS. He added another blood test to check out Rose’s zinc level. If it was low, he said, it could be easily treated by mixing a zinc additive into Rose’s food once a day. Lastly, to check out Rose’s tendency to over-pronate, Dr. Greenstein sent Rose walking down the hall outside the examining room with nothing on but her pull-up diaper. As Rose padded barefoot down the hall, looking for new people to say hello to, the doctor had a chance to assess the degree of her ankle roll. He thought she was over-pronating a little too much and that it would be a good idea to give her feet some support to counter the inward rotation. He said that at Rose’s age it was not going to correct itself and he was concerned that if left untreated, as her bones form, it could take a more permanent set, adversely effecting the shape of her ankles and maybe long term impact on the health of her knees and hips. He wrote on order for Rose to visit the orthopedist to be checked out further. We thanked the doctor and headed off down the hall to visit the lab to have Rose’s blood drawn. This is still not a very pleasant experience. Any three year old has to be difficult blood draw and Rose’s small veins must present an additional challenge so it’s not fun for any of us. The good new is that my fear that last month’s blood test would still be fresh in Rose’s mind was unfounded. As we settled into another small, crowded examining room, with Rose sitting in the normal safe haven of my lap she showed no signs of apprehension. Or maybe it just took Rose more than the minute it took for the lab tech to start poking her arm with the thin catheter line to recognize where she was. Anyway, Rose cried pretty hard at first. I thought I saw a hint of a look of betrayal or at least confusion in Rose’s eyes. This is a hard test to subject her to, the pain is very real for her and the benefit of an accurate diagnosis is just way too abstract. So we don’t even bother with the normal pleas we use when we are trying to give her bad-tasting medicine to help her through her frequent colds and sinus infections. “Take this, Rose, this will make you feel better” and we say and sign, “Better, all better”. Rose will (usually) take her medicine and then answer us with a confirming sign, “Better”. We know she knows. But those words of explanation and comfort would have fallen far short of answering the growing pain in Rose’s arm as the lab tech probed, and searched for a vein, that would flow. So Cheryl and I did our best to distract Rose. We called her name, we cooed to her, we sing to her, we tried to make eye contact; we did everything we could to lessen her pain and probably had no impact at all. After what seemed like hours but was probably only minutes, maybe seconds, the lab tech found a vein that would flow freely and started to draw the sample. Rose’s crying turned over to nervous, relieved laughter. A few more minutes the blood draw was complete, the catheter slid easily out and a folded piece of gauze was taped across the inside of Rose’s arm. This is a familiar experience to the relatively few brave souls that choose to donate blood, but they choose as adults. I’m sure this is a very rare experience for most a three year olds, and for most parents of three year olds, but it’s one that is becoming more common for us. We convince and persuade and cajole her; take the medicine that doesn’t taste that good, sit for another blood test. Most medical experiences these days are very pleasant for Rose; with friendly voices and smiling faces of doctors and nurses and techs that do comfort and entertain her. But there are times when we ask a great deal of Rose. During Rose’s stay in the PICU, the nurses there were smart enough to shield us from situations like this. Cheryl, with her nursing background, tried to be as involved in Rose’s care as possible, using those moments as excuses to get close to her child. But there were times when the nurses would say, “No, it’s not a good idea this time. This is going hurt and you don’t want Rose to associate the source of the pain with you.” It was good advice them and it would still be good advice today but it’s just not possible. The nurses that knew Rose so well are still in the PICU and Rose is, thankfully out in the world of a fairly healthy 3 year old but with all the doctor’s visits and tests that go with being a 3 year old with Down Syndrome. And now it’s our job to be hands on all the time, to convince her to drink bad tasting medicine or to hold her still so a blood sample can be drawn or an X-ray can be shot or an EKG taken. I know Rose is getting smarter and I know her memory is getting better and she is going to really start to see these situations coming and I expect she’ll take a lot more convincing to go back. For Rose’s best interest and for her own good, Cheryl and I will try to do all the convincing it takes. We can see the long-term health needs, as parents should but like no 3 year old ever will. We’ll convince Rose and we’ll get the test done but it will hurt. The whole thing must seem very bizarre to her. She’s got to be wondering on some level, why do Mom and Dad take me into that room and let that strange person hurt me in the arm? What are they thinking? What did I do? In some small way, at least, her trust is us has to be diminished. I am selfishly wishing for just a few more small medical advances; pain-free blood drawing techniques, a pleasant flavor for all children’s medicine, and anything else that can save us from imparting any more discomfort or paint to Rose, or anything that chips away at her trust in us. We’ve been fortunate to benefit from tremendous advances like pediatric open-heart surgery. It wasn’t that many years ago, maybe thirty years ago, that Rose’s heart condition would have been irreparable and she would have only lived a brief three or four months. Obviously, we are very grateful for these advances and for how they’ve added to the quality of Rose’s life and our lives but it’s hard not to ask for a few more. Tonight I was getting Rose ready for bed, going through our regular night-time routing, Rose was laying down on the padded bureau top we use as a changing table and I was trying to engage her in conversation. I’ve found it helps to keep Rose settled down and somewhat focused on the task of getting her changed out of her plat clothes and into her pajamas. And it’s also a quite time that the two of us can share sometimes I’ll quiz Rose on her signing vocabulary, running rapid-fire through all that I can remember and then asking her new signs that we’ve been working on and sometimes seeing her sign them back for the first time (like recent new signs like, “to” and “with” and “I-Love-You”). And sometimes Rose will tell me about something that’s on her mind. During the first few weeks of school Rose would often sign to me. “Rose-school-cry.” I would echo back to her, “Oh yeah, you cried at school today” and then I’d try to reassure her, recounting some positive story that Cheryl has passed on to me. “But you had fun going outside and playing on the slide with all the kids.” Tonight as Rose lay on her changing table, just after I had worked her bandaged arm out of her shirt sleeve, she stopped to tell me something. First she pointed to her bandaged arm, the both hands together in front of her, index finger extended, fingertips tapping, “hurt”. “Arm hurt”, I echoed back, “Yes, I know your arm hurts. And I thought back to the blood test this afternoon. Rose continued, her closed left hand tapped the center of her chest, “Rose”, and then both hands came up to her face, index fingers extended, tracing the tracks of the tears on her cheeks, “cry.” “Rose cry”, I echoed again, “Yeah, I know you were crying today, that hurt a lot.” She caught me off guard. It was sad to think back over how painful this must have been for Rose, and I had no words of explanation or comfort ready to offer her. I couldn’t give her a good reason that I thought would make sense to her and I didn’t have the luxury of the re-assurance that most parents use when their young children are hurt by random accidents, words of lessons learned and promises that it will never happen again, it was waiting less than a year away at Rose’s four year old check-up. And I didn’t know how to explain it to her, how to better prepare her, how to make more sense out of it all for her. I am grateful for the signing words that do give us a window into see what Rose is thinking and feeling but it is still a limited, fragmented means of expression, especially for a three-year old that’s having life experiences well beyond what most people ever encounter. Does Rose mean ‘My arm still hurts?’ or ‘Why did they hurt my arm?’ or ‘Why did you let them hurt my arm?’ I don’t know. I couldn’t tell you. Maybe I underestimate Rose, she signs over a hundred words, she must understand over a thousand, but I’m not sure what kinds and types of ideas she understands although she does surprise and amaze us sometimes. Well, maybe next time, next year, when we are both older and wiser, I’ll have the words of an explanation that make sense to her and Rose will have words that tell me she understands. This time we didn’t. “Come here, honey,” I helped Rose sit up and then picked her up in my arms, hugging her to me, I kissed the soft side of her neck, her little arm reached around the side of my shoulder, and her hand patted my back in that reassuring way of hers. I tried to get us back into the hopefully comforting routine of getting ready for bedtime. “O.K., Rose, let’s go find Mommy and Erin and Katie and say your good-night’s.”
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Erin and Katie and now Rose, for the first time, were on school vacation. We went for an overnight trip down to Mystic to visit the aquarium and the Seaport Museum. We had a good time despite Rose breaking out in an all over body rash. She was taking an anti-biotic for another sinus infection and developed an allergic reaction. This is her second anti-biotic allergy. She developed one for Zythromax last October and now she's got one for Amoxicillon. We called the Dr's office and they suggested we discontinuer the anti-biotic and start her on some Benadryl. Cheryl figured this would be the case but we double checked with the Dr's office to be sure. Rose had already taken 8 days of medication so they thought she'd be fine and wouldn't have to pick up another one. It was a little stressful but we did manage to enjoy ourselves some of the time.
Here's some pictures from our visit to the Mystic Aquarium
These pictures are from our visit to Mystic Seaport Museum.
You can see we were taking a lot of pictures. Rose easily picked up the sign for camera.
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Cheryl took Rose to see the orthopedic Dr. at CCMC today. We had been a little confused about what her splint would look like and how extensive it would be but it ended up being pretty simple. Rose now has a gray plastic heel cup insert for each shoe. The heel cups have a thin white foam pad on the instep side of the bottom and side. It seems to work as intended. Rose’s legs look straight when she’s standing with them in her shoes, no hint of over pronation. They fit into all her shoes no problem. They’re small enough that you can’t even see them poking out the tops of her regular sneakers. Rose seems pretty comfortable with them. Initially she seemed a little curious about these new things we’re stuffing into her sneakers, pulling them out a few times to examine them, but she seems to be accepting them pretty quickly and adapting to them with no problems.
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Eye Check Up
May 3, 2002
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Rose was back for her third eye-check-up in her short life. Erin didn’t go until 5th grade when she was complaining about having a hard time reading the sheet music for her trumpet and Katie is in 4th grade now and still hasn’t been. Both of them raced ahead developmentally and there was never a reason to question the quality of their vision at such a young age. Anyway, Rose’s vision is fine. She has normal farsighted vision typical for three year olds. We talked to Dr. Wheeler, pedi-ophthalmologist, again about the possibility of Rose being a little cross-eyed. He took a close look at Rose and said he thought she looked fine. He explained about how the shapes of the eyes and eye lids of kids with DS can sometimes create a slight optical illusion of being cross-eyed (this is a mildly déjà vu experience, I think he told me this last year, too. He seems like a very patient doctor). The doctor commented again on something he mentioned at Rose’s last visit. He told us that in everybody’s eye where the optic nerve comes into back of the eye, it creates a small blind spot that brain compensates for. In Rose’s right eye a small amount of extra white fibrous insulation shows through around the optic nerve. In some cases this can be excessive and lead to a large blind spot in the center of vision. In Rose’s case he thought it was insignificant and would have no impact on the quality of Rose’s vision. In general, Dr. Wheeler reassured us. He thought that Rose’s vision was doing well and judging by how she was doing today, it was likely that she would not need glasses.
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Cheryl and I were cramming again last night, OK, actually all weekend, or during what little free time we both had. We were reading over the assessments and I.E.P. goals written up by Rose’s team of school therapists. They had given us copies of what we’d being talking to at the PPT meeting so we’d have a chance to be somewhat prepared. And it was a big help. We both read the package over a few times and then we sat down last night and wrote out a list of questions, usually about just trying to clarify something us novice parents don’t understand. In general, the I.E.P. goals covered a lot. We looked at what was listed for Rose and thought it would be great if she could be doing all this a year from now. The only area where we both thought we’d like more emphasis was concerning Rose’s oral motor issues. She’s not eating like our other kids were at three years old; Rose especially has some lip closure and cup drinking issues. This was an area not touched upon in the I.E.P. goals draft and we were just a little tentative on how introducing oral motor issues would be received. Cheryl and I finished our list of questions and comments, with a mention of adding the oral motor goals, and e-mailed it off to Rose’s PPT. It was near bedtime, we were running late, as usual. I wasn’t sure if the PPT would have a chance to talk about our questions and comments before the late morning meeting. Rose’s Planning and Placement Team (PPT) meeting was held in the morning during Rose’s last hour of school just down the hallway from her classroom. So while Rose was busy learning her parents were busy learning about how she learns. The team included Ms. D, the school principal, Mrs. R, Rose’s classroom teacher, Mrs. L, her Occupational Therapist, Ms. E, her speech therapist, and Mrs. B, her Physical therapist. Seven of us sitting around a table talking about our little student, her abilities and her challenges, and the areas where she needs special care to grow. Ms. D, the school principal, called the meeting to order, reminding us all of why we were there by laying out an informal agenda for the next hour; asking each teacher/therapist to first provide an overview of their assessment and then in turn we’d go through each set of I.E.P. goals. She also mentioned they had received our e-mail and thought they’d be able to answer all our questions. Ms. D. checked with us to make sure we were OK with the agenda, and we were. The assessments were great to hear. It was clear that each of them had definitely grown to know our daughter very well over the last two months. In my mind, the transition from Birth to Three to school was complete. Our trusted Birth-to-Three duo had been surpassed by the school team of four. It’s more people offering more time and more services to an ever more capable Rose. Mrs. R. went first and talked about Rose’s transition into the classroom, the difficult tears of the first few weeks and then Rose getting over it on one key day and moving on. Mrs. R. was surprised by Rose’s sudden adaptation, she had been expecting possibly a many-month, long, tearful transition. I’m sure Cheryl and I were thinking the same thing, don’t have pre-conceived notions of what Rose can or can’t do or hold on to them too tightly. Again and again, with Rose things either take a lot longer than you think they should or are over before you know it. As Erin and Katie say, “With Rose, expect the unexpected.” We are all constantly learning this over and over.
Mrs. R. went on to describe how
Rose was in the classroom, her favorite play areas, the kids she enjoyed
playing with and how she was staring to learn the routine and follow along
well. She described how Rose
was learning the morning circle routine and how she’s finally overcoming
her shyness to sign a “hello, friends” response to her classmates
greetings. It was just
wonderfully reassuring to hear Mrs. R’s stories of how Rose was adapting
to the classroom. The other therapists gave their reports too, and it was clear that they’ve gotten to know Rose well, too. They enjoyed her company and thought they were all starting to see progress, but they were also starting to understand her weaknesses. In particular, their insights and candor were well appreciated. Ms. B, the P.T., talked about how surprised she was to discover how poor Rose’s balance was. She was surprised because was walking fairly well. In particular, she saw that Rose was having a hard time stepping over small objects, walking up the small hill on the playground, (Rose was stuck at first and then went to a bear crawl to make it to the top) or just being knocked off her feet from the smallest nudge from a classmate. Mrs. B. thought she could help be working on Rose’s abdominal core strength, coordination and agility. Ms. E, the speech therapist had a compelling observation that she had to share during our oral motor discussion with Ms. L, the O.T. We were talking about Rose’s mouthing of toys, lip closure and tongue protrusion issues when Ms. E. broke in, “You know, I’m sorry but I just have to say this, this is kind of gross, but Rose has been licking the edges of tables. They can be so dirty. This is one thing we need to work on. I mean, you know how dirty the edges of tables can be.” My first reaction was that this is another unique, almost comical, situation that Rose keeps getting us into. Being a parent of two older children doesn’t carry over and prepare us for all the new and different facets of Rose’s challenges. Rose clearly has some complex oral motor issues. It’s not just us simple as not sticking her out, her ability to make different types of sounds or even to eat properly. There’s some positive, pleasurable sensory integration-type feel that she gets from putting objects into her mouth. As she’s gotten older and taller table edges, like our kitchen table and apparently the tables at school as well, have recently come into range as inviting targets. This is something about Rose that if we can come to understand it, we can help her sooner rather than much later. My second reaction was that this therapist obviously cares a great deal about our Rose, her progress and her well-being. It was obvious that she was not going to let some social taboo, like mentioning that somebody shouldn’t be chomping on and licking the edges of tables, get in the way of our daughter’s care. In a very odd way, I found this to be a relief and a comfort. The rest of the meeting went well. We worked our way through the list of questions that we had sent in. Many of them we had already answered during the course of the reports and the initial review of Rose’s specific I.E.P. goals, like the one concerning adding more oral-motor-specific goals, Ms. L., the O.T., had been very receptive about taking it on. Another question that Cheryl and I had, and we thought would potentially be the basis for another I.E.P. goal, didn’t go the way we thought it would. When Cheryl and I were reviewing and talking last night, one area we felt would need to be addressed was how often we carry Rose instead of telling her to walk on her own. Rose can walk fairly well and her endurance is pretty good, when she wants to. Often, Cheryl, Erin, Katie and myself are too impatient or are in too much of a hurry to wait for Rose to walk where we want her to go. After some efforts to persuade Rose, we give in and pick her up so we can get where we’re going; out to the car, home from the park, or down the aisle to our pew in church (Rose wants to stop and say hello to everybody), or going up the stairs to bed. We mentioned this to the team and their initial reaction was silence, not like they were stunned, but definitely like we were talking about something they had not experienced themselves. After a thoughtful pause, the comments started, “Oh, we don’t pick her up,” “We can’t be picking up all these kids,” “Our backs couldn’t take it,” “We couldn’t do that with all the kids we’ve got” and “That’s not really an issue with us. Sometimes Rose needs a little extra encouragement, but she’s learning to follow along.” The conversation meandered into whether or not it was okay to give and receive hugs from Rose. We reassured them that it was, I mean she’s as huggable as any three-year-old, who could refuse a hug from her? But, as Cheryl and I were sitting there it definitely started to sink in that this was not an ability issue, it was a behavioral-manipulation issue, and we were pretty sure who was manipulating whom. And, maybe this is something that’s going to be more difficult for us as Rose’s parents. While much of Rose’s home life is as structured as the school routine, much is not, like the frequent shopping trips, and crossing of parking lots are particularly challenging and potentially unsafe. Rose has an ability to slip through a firm handhold that would rival Houdini. After one or to reminders and attempts, we scoop her up and get back on our way. We also talked about Rose riding the bus again. Cheryl and I still aren’t ready Cheryl is still driving Rose to and from school everyday. It’s still hard to imagine our little Rose climbing onto a bus at only three years old. Erin and Katie didn’t take a bus to pre-school. They didn’t step onto a bus until the very first day of kindergarten. Of course, their pre-school experience was a little different than Rose’s. They had no special therapies or special considerations to compare to Rose’s team of special-education teacher, speech, O.T. and P.T. Ms. D., the principal, suggested that maybe we work up to having Rose take the bus home at the end of the school day. Cheryl and I almost grudgingly accepted to consider the suggestion. Maybe she’s thinking farther ahead than us. Maybe she’s thinking that Rose’s first day of kindergarten will go a lot smoother if Rose is already familiar with the bus ride. Its’ just another small area of compromise and letting go of what we think a normal life should be. I guess we just have to remind ourselves that our over-riding goal is to have Rose come out of these two plus years of pre-school prepared to step right into a kindergarten classroom. Cheryl and I had quite a few questions specific to how the I.E.P. forms and process works, what different abbreviations and acronyms stand for. Much of this still seems like a foreign language to us. The team was very helpful and patients with their answers. We’re starting to learn, but the 20 pages packed with it’s 13 Measurable Annual Goals and 39 short term objectives and bench marks is somewhat daunting. When we look at all these goals, our reaction is that it would be great if Rose was doing all these things, demonstrating all these abilities a year from now, but it also feels like a tremendous responsibility. Is there some important piece that we’ll miss? Something we won’t support properly? Some observation about Rose we’ll fail to pass on? Is there some facet of Rose’s development that will suffer because of our ignorance? The hour had flown by. It was a lot to take in. Ms. D. had each teacher and therapist briefly review their goals and then she polled them for how much therapy Rose would need in the next year. “Okay, O.T. one hour a week?” “Yes, that sounds right.” “Okay, and P.T. one hour a week?” “No, I think she needs an hour and a half.” “Okay, and speech? One hour?” “No, I think she needs an hour and a half, too.” And as quickly as that the meeting was ending. Ms. D. checked with us to make sure we were OK with the meeting, and we were, and if they had answered all our questions, and they certainly had. But, I was still left with a sense of rushed incompleteness. I think maybe if they could have answered all of our unformed questions of our doubts and fears and uncertainties then I would have been satisfied. However, I realize that that is impossible. They can help make Rose better, but they can never make her all better. This is the start of a long process to do the best we can to help Rose achieve her full potential. The goal is the same for all of our children; the process is just a lot more complicated for Rose. Ms. R. had slipped out of the meeting to get Rose as her class was finishing up, Rose walked into the meeting room, now taking in the scene of all her teachers sitting around a table with her mommy and daddy. She spotted Cheryl and me, her open hand came up, thumb tapping the side of her forehead, signing Daddy as if to say, “Why’s Daddy here?” She came over to us and gave us a hug. It was time for Mommy to take Rose home and it was time for Daddy to go back to work
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Heart Check-Up May 9, 2002 |
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More good news, everything about Rose’s check up with the cardiologist went well. Dr. Leopold is so good with kids. He seems to spend more than half his time playing with Rose and putting her at ease. Rose being happy and enjoying her visit is just as important to him as getting her examine done. Anyway, Rose’s heart sounded the same, still a slight murmur. She had an EKG. Everything was fine. No echocardiogram this time. She had one last year, she’ll probably get one next year, Dr Leopold explained, there’s no need to stress her out with one every year. After Rose’s heart check up we stopped by Dr Greenstein’s office, the geneticist, for the results from the thyroid test and the zinc level test. Rose’s thyroid looks good. The more detailed, thyroid specific tests showed that everything is fine, no hypothyroidism, and no need for any medication. The zinc test showed that Rose’s zinc levels are on the low side of normal. Dr. Greenstein said that while it was still in the normal range, Rose might benefit from have a daily supplement of zinc. He recommended 200 mg of zinc sulfate to be crushed and mixed with her food. For more on zinc additives go to http://www.ds-health.com/vitamin.htm |
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In Our Sandbox May 2002 |
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This is one of Rose's favorite places to play. Well, maybe fourth favorite. First, she wants to go to her cousins house down the street, either the Library or the park are a close second and then playing in our sandbox or on our swings.
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