IEP.... Not as Bad as One May Think

We had Clare's first IEP meeting yesterday. After more brief panic attacks about what to wear (ummm... and promptly forgot said panic attack come yesterday morning and ended up wearing my favorite pair of jeans that I wear five days a week and a comfy shirt), what we were going to insist upon having in the IEP (which Shawn and I hashed out in detail during commercials while watching the first Final Twelve showdown of American Idol), and whether or not all children would be healthy so we could leave them with their grandparents (I am pleased to say they were all healthy for exactly one day!), the day of the IEP finally dawned. This long-dreaded-oh-so-important step in the transition process was here.

For those who have never had the experience of venturing into the world of special education (and I had no clue what any of this meant before Clare), IEP stands for the Individualized Education Plan. In a nutshell, it is a list of the educational goals we would like Clare to reach by the end of the school year. It also includes a list of accommodations that Clare will need to reach those goals as well as whatever services she will need. It's a signed contract between us and the school department. Signing all the paperwork was almost as bad as buying a house.

Shawn and I were both extremely satisfied with the results of the IEP meeting. The team was great, and the IEP was thorough. I expected to go in there and help them draft the whole thing up right then and there. But the IEP was already written, we went over it in detail, then we brought up our concerns. Other than a couple sensory goals, everything we wanted for Clare was in the IEP. Including a defibrillator on site with trained staff. Hooray!

Clare will be attending preschool four mornings a week. The team felt Clare needed a fourth morning of school because of all the services she will be receiving - two units of group speech, one unit of group OT, one unit of individual OT, and two units of individual PT per week. It only amounts to 3 hours of therapy per week, but that's longer than the length of an entire school day. I was happy with this arrangement. Going in, I wanted one hour of PT, OT, and speech per week, which we got. At this point, I am not concerned whether the services are group or individual. We will see how Clare progresses and take it from there. One of the good things about Clare starting preschool at the end of the year is that she will only have about 10 weeks of school before summer. So we will have a chance to evaluate her progress, figure out what worked and didn't work, what we liked, etc. then have all that information when planning her first full year of preschool come September (and writing a new IEP). The team also felt Clare needs an extended school year or else she will regress over the summer, so we enrolled her in the five-week summer course as well. In addition to all this, we are going to continue outpatient OT with Clare's current OT, Jen, to work on Clare's sensory oral issues. We have had to cancel OT the last couple weeks due to illnesses between Jen's family and ours, and I can feel us slipping away a little. So I am eager to start up again.

After the meeting, the assistant director offered to show us Clare's new classroom. Clare will be coming in for a visit day at the end of the month prior to starting school, but Shawn and I jumped at the chance to get a sneak peek. As luck would have it, Clare's new teacher was in the building. Although she didn't currently have a class since it was the afternoon, she walked us through her classroom. She explained the different areas of the room and the daily schedule. She was obviously already well-informed about Clare and asked us lots of questions. I instantly liked Clare's new teacher. (Warm fuzzy feelings - yea!) The teacher was genuinely interested in learning all she could about Clare, and we could tell she loved her job and the kids. We also discovered that Clare's classroom is directly across from the nurse's station (who will be on site whenever Clare is in school).

I have been dreading the day when Clare starts preschool. I am so glad we had the opportunity to meet Clare's teacher and see the classroom. I will still be a basket case come March 31, but many of my fears and worries have been relieved. I must say that coming into this process with so much trepidation and low expectations has worked out for the best! Nowhere to go but up!

A Little Bit of Fame

Nothing too grand, but I am briefly published in the April edition of Parenting magazine. And I mean briefly. Basically a blurb in their regular feature "Mom Exchange." This month's was about different ways families stay in touch with extended family and friends. So, of course, I talked about blogging. And I am quoted!

So if you have your April Parenting magazine handy, open up to Page 27!

All Dressed Up

In the Thick Of It

We are now in the thick of Clare's transition from Early Intervention to preschool. Last week, we had Clare's eligibility meeting. Basically, Shawn and I (accompanied by Clare and Simon - lucky Jamie had a playdate) sat at a table with Clare's current OT and PT from Easter Seals, and the team from the school department - the assistant coordinator, school nurse, speech therapist, and special educator. After the coordinator explained they were coding Clare as "other health impaired," the eight of us signed a piece of paper and circled the word "yes" stating we believed that Clare was "other health impaired" and qualified for the developmental preschool. Then we signed more papers agreeing with that decision, then signed more papers stating we agreed with the papers we just signed agreeing with the decision. Love all the paperwork!

So now Clare is officially eligible for preschool. The next thing we discussed was equipment that Clare would need for preschool. This way, if anything needs to be ordered, they will have it in time for Clare's first day. The first thing the school nurse brought up was a defibrillator. I admit that surprised me. Having an AED in Clare's school is something that Shawn and I have discussed and both agree we are going to push for. But I did not expect one of the team members would mention it first. I was equally surprised to find out that the none of the preschools have an AED. The nurse explained it was not mandatory unless the school had an organized sports team. (What - no preschool volleyball or field hockey??) I am pretty sure Clare is not the first child to go to one of these schools with a heart condition, so I have a hard time believing she is the first child to require an AED. I could not get a feel whether the AED requirement is going to be a battle or not. The other pieces of equipment discussed were things like a chair with sides, a toilet seat with handles, no stairs in her everyday environment, that kind of stuff.

Our next step is the IEP meeting this week. We have our childcare all lined up for all three children so that Shawn and I can concentrate on writing the IEP with no distractions. Unfortunately, Jamie is getting over the flu, Clare currently has the flu and sleeping soundly in the middle of the day as I type, and we are praying that neither Simon nor us come down with the flu. I have a feeling, though, that I will not be participating in the IEP meeting.

Snow Bunnies

It's been quite a winter here in New Hampshire. I laugh at some of my posts from last winter and the photo of Jamie standing next to the tiniest snowman ever built. Not the case this year. It's been the snowiest winter in NH history. Which was so nice and lovely in December, kind of nice in January, not so much in February, and we're officially DONE WITH WINTER now that it's March. However, we were just dumped with more inches of snow last weekend, and the snowblower died a quick death right in the middle of our half-cleared driveway on Saturday. Shawn went snowblower shopping that afternoon and unfortunately, since it's March and thus we're into summer gear already, the pickings were slim. We may be shoveling ourselves out the rest of the winter.

It's been the kind of winter where our swingset has half-disappeared, our deck is barely visible, and there literally is nowhere to put anymore snow from our driveway. We have two piles of snow on either end of the driveway that are easily seven feet tall. It's a blind backout every morning, praying I don't hit a neighbor's car. With all this snow, though, the kids have not had a lot of time playing outside. Neither Simon nor Clare can walk in the snow, and they rarely nap at the same time. I am not up to the task of carrying two children around in the snow, so Jamie is either stuck staying inside with us or playing outside by himself.

Today, however, was a "warmer" day (I love how 40 degrees seems positively balmy after temperatures below freezing). I convinced Shawn to cut out of work for a little bit this afternoon, and we bundled the kids up to head outside. Clare has not had much practice walking outside because of the winter conditions, but I thought we would give it a whirl since Shawn was here to help out with Simon and Jamie. I figured we would last about five minutes. Jamie bounded over the huge hill of snow like a rabbit and was off into the backyard. Simon sat in the stroller and laughed at Jamie's antics. Clare shuffled around on the sidewalk experimenting with the sensation of walking on uneven ground while wearing snowpants and snowboats (a first for wearing both those items). Her confidence soon increased and, before I knew it, she had taken off down our driveway. Our snowy, ice-crusted, uneven, downward sloping driveway. Not a trip, stumble, or fall!

Clare loved playing in the snow. She picked up snowballs (the bigger the better), chunks of ice, and the dirty yucky plowed snow. While Jamie and Shawn had a huge snowball fight and I pushed Simon around, Clare stomped in the puddles and touched all the snow she could get her hands on. We had a fun afternoon walk in the snow. Now it can all melt.

Valentine Fund Thank You

Thank you to those who donated to the Williams Syndrome Association Valentine Fund in honor of Clare. We received our list today of who sent in donations in Clare's honor, so we know who you are! A big thank you to all!

It is not too late to donate, if you are interested. Simply click on the link to the right to be directed to Clare's page.

Reeling

I don't even know where to begin sometimes. There is so much in my head threatening to spill out and I try to marshal it, corral it, and rein it all in, but often it is too much.

The death of Blake has naturally hit our little community hard. The WS-mommy bloggers (as I refer to us) have been together for some time now. I think I was the first to start three years ago, but our numbers have exploded over the past couple years. There are so many of us now I cannot keep up with everyone (thus why I only have a select few linked on my blog). It's amazing to have this close group of friends, the majority of whom I have never even met in person. We have been there for each other through it all - the highs and lows, the triumphs and challenges. We have counseled, supported, and loved each other on the phone, via e-mail, through our blog posts and comments. We have been there through those tough days, nail-biting tests and evaluations, multiple echos, caths, procedures, and surgeries. But this is the first time we have experienced death in our community. That one of our precious children is gone. And, at least to me personally, it has sent me reeling.

My heart just aches for Whitney, Troy, Brandon, and their family. I cannot begin to fathom what they are going through. I pray I never have to find out. Yet I know this has been another dose of reality of how fragile many of our children are. Last night, as I said my final good-nights to Jamie and Clare, I leaned into Clare's bottom bunk. She was sitting there in her blue airplane hand-me-down boy pajamas, her crazy curls standing on end, and wearing dress-up earrings, a bracelet, and a ring (which she must have smuggled in her bed sometime during her afternoon nap). She looked so beautiful, so sweet, so tiny. I gave her a big squeeze and whispered, "Mommy loves you so much." She touched my face and whispered back, "I love you." That's what keeps me going.

In Memory

Baby Blake

July 6, 2007 - February 26, 2008

Your time in this world was not long, but what an impact you made on us all. You are loved. We are praying for you and your family.

Blurb

In our own little neck of the woods, Simon is back on his feet. His lungs, ears, and eyes were clear at the doctor's yesterday, and his oxygen levels were back up to 99. Jamie and Clare only got a touch of the sniffles, as did Shawn and I.

In my larger WS-community, however, life is not as good. It makes me feel helpless that, many times, all I can do is tell someone I am praying for them. I am such a do-er kind of person - making meals, watching kids, anything to make someone's life a little easier in the practical sense when faced with such hardships. I cannot take away people's worries or stress or fear, but I can make sure they don't have to be concerned about getting dinner on the table. However, being far away from the majority of our WS-blogging mommies, I wish I could do more. All I can say is that my prayers are serious. We have been saying the rosary as a family every night this Lent, and there have been many special intentions for our WS-friends out there. We continue to keep you in prayer.

Update - Ava is home now and slowly on the mend. Thank you to all my family and friends who keep our friends with Williams syndrome in their thoughts and prayers as well.

Reality Check

As I mope and complain about how tough things have been around here lately with illnesses, I have to stop and think about those who would give anything to just be at home with their kids right now. As I write this, I am thinking about Baby Blake and Ava - two kiddos with Williams syndrome who are currently in the hospital and have been for some time. Ava is very sick, Blake is fighting for his life, and it hits me hard with a dose of reality. It reminds me that I need to take a step back and count my blessings, not my woes. To hug, love, and kiss my kids even when I am fatigued, and thank God that we are (relatively) healthy. That Simon is slowly getting better and did not end up in the hospital. That Clare has gone five months without needing a cath. That Jamie is running around, playing, and being his normal bundle of energy. I say a special prayer tonight for those two children and offer my challenges, frustrations, and worries of the day as a sacrifice to them.

When It Rains

... it not just pours, it's a monsoon.

After battling various illnesses over the past three weeks, Simon was diagnosed with RSV and bronchial asthma yesterday. After running around town to find a nebulizer last night and getting our baby breathing easier (his oxygen levels were low), I took him back to the pediatrician today for a re-check of his lungs. Now it is not RSV, but pneumonia. Plus another double ear infection and a double eye infection. With Simon and Clare combined, I am administering 20 doses of medication daily plus nebulizer treatments every four hours. And Shawn is away on business. Join my pity party please! And pray for Simon to kick this pneumonia and be back on the road to health.

First Haircut

I need a haircut! I can't go around and let the girls see me like this. What is that thing sticking up in the back? I look like such a baby with this hair.

Hey, this is fun! Wow! A big boy haircut. At the same place and with the same woman that Daddy and Jamie go to. I am one of the guys now. Woo hoo!

Actually, you know what? I really am all done with it. This is no longer fun. No, I mean it, quit holding my face, pulling my hair, spraying water on my head. Just stop it. NOW!

The finished product - a handsome 9-month old with a big boy haircut. (Or as Daddy likes to call them - My First Mugshots.)

Little Princess

Busy Week

It's been a busy week in our household. Clare has had some sort of thing going on every day, we've had some wicked weather, and poor Simon is still sick.

Between freezing rain, icy cold temperatures, snowfall, and flooded streets, we've been fairly housebound all week. Jamie had a snow day on Wednesday, so three days in a row without school has been tough. He is definitely at the age where he is not content to just be at home all day with me and the "little" kids anymore. Everyone goes stir crazy being cooped up in the house all day. With Simon being sick, plus everywhere you go is a sheet of ice these last few days, it has not been ideal conditions to even take a break by going to the bookstore, mall, Target, anywhere!

My sweet happy baby finally turned into a monster. I jinxed myself by bragging what a good boy he was even with all his ailments. By the weekend, he spiked a fever and was miserable (to put it mildly). He stopped taking naps and slept horribly at night. By Tuesday, he had also developed a deep, hacking cough and sounded wheezy when he breathed. So it was back to the doctor's office to add diagnoses of a double ear infection plus a worsening skin rash, which in turn means antibiotics and steroid cream. Slowly we are seeing our Simon come back to us from this red, speckled, unhappy baby we have had all week. (Spattergroit, anyone?)

Clare has had a busy week. Besides OT on Monday and PT on Tuesday, the feeding team came out on Wednesday, and she had her special education evaluation with the school department on Thursday. The feeding team spent an hour and a half at our house, and the only thing we got out of it was to try adding pureed cauliflower to Clare's macaroni and cheese. Shawn and I were not as impressed with the feeding team this time. We both feel Clare is at a point now where she physically has the oral motor skills to eat almost every kind of food. However, she is at the picky, opinionated 2-year old phase of life, and we see her exerting her control over what she eats and, more importantly, does not eat. Clare does have a lot of sensory issues going on when it comes to food, so her OT has been working weekly on that with Clare. I think Wednesday was our last visit with the feeding team. Although they scheduled a six-month follow-up for August, I just don't feel the need to have Clare seen by them anymore. I feel it is a waste of time for everyone involved. Clare will be discharged from Early Intervention in six weeks, but we have already arranged with her OT to continue feeding sessions once or twice a month. They have a good rapport and her OT is enthusiastic about coming up with new ways to get Clare to at least explore different foods, so I feel comfortable continuing with this route.

Since Clare was already evaluated by OT, PT, and speech last month, the school department only needed an evaluation done by a special educator. The educator did the same tests that Clare has done a million times, and Clare certainly acted like the kid that has been there, done that. For example, the educator asked Clare to stack blocks. Clare stacked two, gave a bored look, and questioned, "All done?" For each activity, Clare did the bare minimum, then stated "all done." She would then sit in the little chair with her chin rested on her folded hands on the table and just stare at the educator until a new activity was presented. I thought it was rather comical. I am not too concerned about what the educator writes up because Clare's January evaluations are very thorough. The next step is to meet with the school department's team, go over the results of the evaluations, and discuss Clare's placement in the preschool. Then one week after that meeting (which is in early March), we will sit down with the team again to write Clare's IEP. Six weeks and counting until the first day of school.

One day and counting until the weekend!

Valentine Fund

Valentine's Day is naturally a day that is connected with hearts. While we are thinking about hearts, we always think about the heart that needs our help and support the most - Clare's heart.

"The Williams Syndrome Assocation was formed in 1982 by, and for, families of individuals with Williams syndrome. The WSA is the only group in the U.S. devoted exclusively to improving the lives of individuals with Williams syndrome and their families. The WSA supports research into all facets of the syndrome, and the development of the most up to date educational materials regarding Williams syndrome." (from the WSA website) The WSA has helped our family personally by hosting events where we have had the opportuntiy to meet other individuals with Williams syndrome and their families. The WSA also bestows grants to researchers such as Dr. Carolyn Mervis, who we took Clare to see this past November.

With your help, our dream of a better future for individuals with Williams syndrome can become a reality. Please send your love to Clare this Valentine's Day in the form of a contribution to the Williams Syndrome Association Valentine Fund. You can view Clare's Page here. Happy Valentine's Day!

The Picture of Health

Simon is an oddity in our house. He has never been to the pediatrician's office for anything other than his well-baby visits. Unbelievable! I get questioned about how much he weighs, and I proudly declare, "I don't know!" He rarely gets weighed! He takes no medication, has no diagnoses, and is the picture of health.

So when some little bumps appeared on Simon's skin recently, I chalked it up to a mild reaction to recently introducing dairy in his diet. We cut out the yogurt, but the bumps did not go away. Then I realized that it was eczema, something that Jamie battled in his infancy as well. It was not until the rash spread over his entire body that I thought something more might be going on. Simon is child #3 and we have seen many illnesses come through our house, so I figured that Simon had a little virus that ended in a rash, which is common. Then his eyes started to goop, and the rash on his cheeks became quite painful-looking. So I finally decided to call the pediatrician and have them take a look at Simon.

And don't you know it, it's not just a rash. In fact, Simon has Hand, Foot, and Mouth Disease (complete with blisters in his mouth and throat as well as the full-body rash), an eye infection, a skin infection around his eye from the resulting drainage from his eye, impetigo on his face, and fluid in his left ear (which is not an ear infection yet, so hopefully that will go away on its own). Each of those individually is really not a big deal and we have had each one in our house at some time. But not all at once. To the same kid. So now Simon is on a bunch of medications, including one to fight staph infection (not that he necessarily has one, but impetigo can be caused by staph, so the pediatrician wants to make sure it gets treated ASAP).

Through it all, Simon remains my sweet, happy baby. He is having trouble sleeping at night, but the doctor said his mouth blisters could be more painful at night and a dose of ibuprofen before bed would help him sleep better. In fact, he was grinning away the entire time the pediatrician was examining him. Hopefully in about a week, he will be the picture of health once more.

Potty Talk

Potty-training... going fabulously! I was super nervous about even training Clare because she is... (whisper) a special needs child. With Jamie, we did the whole "sit-on-the-potty-get-an-M&M" routine for a couple months when he was about 2 years old with small success. Then Clare was born, life got crazy, we moved, and potty-training took a backseat. Or as I like to call it, we took a more laidback "when-he's-ready-to-train-he-will" approach. And Jamie did. Woke up one morning shortly after his third birthday, wanted to buy Spiderman underwear (which we promptly did), and was trained in two days. It was almost too easy. So I've been having internal freak-outs about training Clare.

One thing I knew for sure was that I was not going to use Clare's handicaps, delays, special needs, whatever as an excuse. I borrowed a couple books from the library about "toilet training your child with special needs." And there was nothing in there that was "special." Nothing! Everything they talked about was stuff we did with Jamie, which made me laugh. It also made me realize, once again, to treat Clare normally. Obviously we were not going to start physically training Clare until she could actually walk herself to the bathroom. But I started talking about it with her everytime I changed her diaper. There has been lots of potty talk in our house lately! Then we brought out the little potty and just sat it next to the big one. One day, I asked her if she wanted to sit on the potty. She emphatically stated "no" and left the bathroom. I casually asked again a couple days later and received an even louder "no no no." I had one more trick up my sleeve before taking a break. Elmo and M&M's - Clare's two favorite things. I asked Clare if Elmo could go to the potty and get an M&M. She was all for that idea. So she solemnly watched as Elmo sat on the little potty, then proudly received an M&M. Clare wanted a turn. Fully clothed, mind you, but sitting on her little red and blue throne was enough for an M&M reward.

Flash forward a few weeks, and Clare has graduated to refusing the little potty. She insists on only sitting on the regular toilet (with her potty seat on top or else I think she would fall right in!) and almost always pees. She even asks now to go "pee on potty" and, if I ask her about it, she dances around singing "potty emmies potty emmies." (Her word for M&M's.) She eagerly wants to sit on the potty now. We are working towards the big deal of doing the #2, but I am so pleased with Clare's progress. She is still two months shy of turning three. Another teaching lesson for Mom - don't shortsight my kid. Don't make excuses for her. Let her be a normal kid - potty and all.

Happy Birthday, Jamie!

Dear Jamie,

Five years ago today I had no idea how my life would change. I knew that life would change - after all, I had recently quit my job, weighed 40 pounds more than normal, and could feel a little person doing somersaults in my belly. I just did not know in what form those changes would be. Motherhood has been beyond my wildest expectations. No one can prepare you for how incredibly hard and how incredibly amazing it all is.

I read all the parenting books, but no one told me how I would erupt in fits of giggles watching you dance or listening to your knock knock jokes. I watched friends play with their babies, but no one clued me in that I would willingly brandish a sword and refer to myself as "Donatello" or "Splinter" as we marched around the house. No one warned me that I would love you so much that it would make my stomach feel funny and my chest tight and even fill my eyes with tears. Or that I would start welling up over the Johnson & Johnson baby commercials when, before having you in my life, the only movie that ever made me cry was Dances With Wolves.

As you grow, I know that each day is a gift for what it brings. I realize that, even though you are no longer my baby, I still love to watch you sleep at night (but not in the scary way, like in the book Just In Case You Ever Wonder). I love to hold you on my lap and read books together. I love how the majority of my photos of you are very sweet and slightly goofy. I love to watch you carefully hunt in your I Spy books, pose your ninja turtles just so, and arrange your stuffed animals before bedtime - all with the careful precision and attention to detail that you have inherited from me. It has been a wonder and a privilege to be your mother over these past five years.

We love you, Jamie! Happy Birthday!

Gotta Love It

Simon Joseph - Incredibly handsome at eight months old.

Awareness

Around the breakfast table this morning, Jamie was questioning us about the day's activities (it is very important for him to know the itinerary of each day). He asked, "Do I have school? Do we have swim class? Does Clare have physical therapy?" As I answered "no" to each question, I explained that today was the weekend and a day to play at home all day long. Then Jamie asked, "Does Clare have Williams syndrome today?" I was floored and taken aback by the unexpected question.

We have briefly explained to Jamie in the past that Clare has something called Williams syndrome. One time, he overheard us discussing it and asked what that was. But I have no idea how much sinks in. Jamie is a very intelligent almost 5-year old, but you never know what they really pay attention to. So I explained to him that Clare will always have Williams syndrome. I told him that was the name for why Clare has her heart boo-boos, took a long time learning how to walk, has help from Jen and Kelly (her therapists) to teach her how to do things. Jamie grasped this simple explanation and added, "And why Clare doesn't like to eat anything!"

It was an eye-opener to hear Jamie ask about Williams syndrome. I know that he will know all about it someday. It will always be as much a part of his life as it with Clare's and our entire family's. I was just surprised it would happen so soon.