A blog about the unexpected pleasures of raising two not so typical, but truly wonderful girls, one of whom was born with a little something extra; and learning each day what is truly important in this blessed life.

Saturday, October 16, 2010

Field Trip

I went with Miss Roo on her first field trip at her new school yesterday.  And, since it's October, of course, it was to a pumpkin patch.  I had offered to be a chaperone and her teacher accepted even though they usually do not take parents on this annual field trip with the 1st and 2nd graders.  I'm so glad I went, though.  The day was gorgeous and I got the opportunity to see Marisa interact with the kids in her class and with other kids from her school.  It is not perfect, believe me, and my heart mourns at times for her inability to relate to the kids the same way as they naturally do with others; but I still saw some very lovely things happen during the trip.  There is a girl in her class she seems to be a bit obsessed with, and I think it's because this girl's locker is beside Marisa's and because at the beginning of the year the girl was helping Marisa quite a bit with her work during the day.  I could tell during the field trip that this little girl doesn't feel the same way about Marisa as Marisa does about her and I may need to intervene at some point or at least talk to her teacher about it.  The other girl wasn't mean to Marisa, but she obviously didn't want to hang out with her either.  That being said, there were plenty of other kids in her class who did want to hang out with her, and I was thrilled to see that.  

A funny and touching thing happened after Marisa ran into the hay pyramid at the pumpkin patch.   We've gone as a family to this farm to get a pumpkin the past couple of years and every time Marisa made a beeline into the hay pyramid.  She loves that dark, cramped, to me completely oppressive, space for some reason.  So, I had a hunch she would do that during the field trip.  I was right.  She ran in, as did most of the other kids, and after a while I asked one of the boys to go get her.   Soon, a contingent of 1st and 2nd graders were on a mission to find Marisa and bring her out safely.   At no time did I feel they were poking fun at her or put out by trying to find her.  They joined together to help her out.  One of her classmates brought her out with him and then he said very sweetly, "We found you Marisa," and gave her a hug.   Later she climbed to the top of the structure and a girl from her class ran up so she could help Marisa come back down.  Marisa has very good gross motor skills and would have had no trouble coming down from the top but it was still very sweet of this other girl to want to help her out.   The classroom aide told me she was glad I came because she wanted me to see that there are some really great kids in the class who are supportive of my child and for me to witness some of the good things that happen with their interactions.  She said she knew that I mostly had to hear bad news, and she wanted me to be sure to know there was lots of good news too.  Thank God for that!  

I also got to spend time with Marisa's new one on one aide and she seems really great.  I was so happy after this experience that I even went out and bought Marisa a beautiful dress (but thankfully not expensive!) for the school's Christmas music program a couple of months from now.   I'm finally at the point of accepting that we just might be able to make a go of being back in the classroom.   I can't even express how wonderful it will be if she can learn to be a part of a broader community and get along with lots of different people, while making gains academically.   That will be an overwhelming answer to prayer.   So, that thought, coupled with a beautiful fall day in a favorite pumpkin patch, makes life worth living!

Friday, October 8, 2010

Roller coaster ride of inclusive placement

My days have had incredible highs and deep, dark lows for the past month.  It has taken a long time for the kids to start to accept Marisa and her uniqueness.  She is a physical kid, hands on the other kids often, grabbing them or their stuff, and the school and I have been trying a variety of strategies to lessen or (God willing!) extinguish this behavior.  I would not take away her Down syndrome if I could, but I would flip a switch gladly to get rid of the complicating behavioral challenges.  Many things have gotten better over time, but some things she does seem to go on and on with no let up.  The first few weeks when I walked her into the school building, I could sense, and see, that the kids were afraid of her.  If I were a kid, I would be too.  It's not fun to have someone, especially a kid you don't know well yet who does stuff you can't understand, come up to you and grab you for no reason. 

I also had a chance to ask two of the "specialist" (music, art, computer, etc.) teachers how it has been going.  Previously the PE teacher told me Marisa was doing well and that he had been working on teaching the other kids how to help her and be her friend.  He is a great advocate and I'm happy to have him on our team.  The music and computer teachers were not so supportive and their negative reaction to my question surprised me.  I know my lovely little girl can be difficult to work with, that she gets distracted easily and can easily be a distraction for others; but I was dismayed at their unwillingness to see her value and that they preferred to just speak about the negative aspect of having her in their classes.  

This past week the tide seemed to be turning.  Marisa got a lovely little card in the mail from a girl in her class, and the kids started greeting her very nicely when she walked in.  The teacher also told me that several of the kids were really stepping up to be her friend.  Hallelujah!    I put this in the past tense because when I picked her up yesterday she told me she was sent to the "time out chair."  I finally got out of her that she had hurt another girl in her class.  Well, a problem arises from this admission.  It is difficult at times to tell from Marisa's words if she is talking about herself or describing what happened to someone else.  Without checking with her teacher, I can't tell if she was the one who hurt the other student or if someone else did.  This is an example of what I call an "added layer of complexity" in having a person with Down syndrome or any other type of developmental disability in your life.  Changing behaviors from negative to positive is very difficult and time-consuming, and getting a clear and accurate report from the person in question can also be very difficult.  So, I've decided to wait until Monday and see how the kids greet her once again. 

The school has asked me to submit a letter to the parents in Marisa's class.  This stems from several parents asking me if the school was going to give them information on Down syndrome so they could answer questions their kids might have.  I appreciate that.  Now I just have to come up with a very positive, person centered introduction to my child and her diagnosis.  Hope I'm up to that challenge!

The bottom line is still this : it is difficult to facilitate successful inclusion for a kid like my wonderful daughter; but it is worth the time and effort, worth all the tears I have and will shed, and worth continuing to work at it every single day.  She deserves to be an active, participating member of the greater community, and I will fight for that until my dying day.

Monday, September 27, 2010

Excuses, excuses

I can't believe September is almost over and that we're heading into the holiday season.  I was hoping to have more time to write, clean up my house, and do all the stuff I couldn't manage to find time to do as a homeschooling mom last year; but no such luck.  Each day brings more and more things added to the schedule : good things such as having coffee with a wide variety of friends who share having kids in school in common, and not so good things like having to drop everything and head downtown to pick up a sickly kid at school, well not sickly but cyclical if you know what I mean; and then drive her back to school several hours later for a freshman class (all girl school) sleepover.  I feel like I'm doing less and still feeling more exhausted at the end of the day. I also often feel like everyone else must have figured out a way to have more hours in their days because I just can't seem to get enough done.  I don't sit around, am on the go pretty much constantly, and maybe that's the point.  Maybe I'm on the go going to too many coffee dates, serving volunteer hours, carting the family all over creation, etc., etc, and that's why I'm not getting enough done at home.  Time to find that proverbial balance.

Our local Buddy Walk was yesterday, Sunday the 26th.  I used to help out with the planning and working the registration table for the event, but no longer.  It's run by a great group of people but I ended up with too much else going on right around this time of year.  It is so great to see lots of families with kids like Miss Marisa, but also to see all the people who come out in support of the kids like Marisa.  Buddy Walks around the country are yet another thing that gives me hope for the future.  Now if I could only find hope in myself to finally clean up the dining room, formerly known as "homeschool central."

Oh well, tomorrow is another day!

Monday, September 13, 2010

Back to school and blessings received

I'm not complaining.  Little one is at school for the whole day today.  This is her very first experience with all day school, and I am excited and anxious to hear how she did.  Last week the 1st graders just went 1/2 days, so now we're in the big time. She had to adjust to eating lunch in the lunch room, getting up at the crack of dawn again, and getting used to a whole new set of kids.  Last year she went to public school for only 2 months and then I homeschooled her the rest of the year.  We had our own routine and it worked pretty well, but she still was not "at work" all day.  Thankfully her school is very supportive and believes without a doubt that she belongs there, so that is a big plus.  I am just hoping and praying that she can settle in as quickly as possible and learn how to be successful in her new environment.  She will have an aid for a portion of the day soon, but for now they are just working with her within the inclusive classroom to see what she needs for support. 

I got to walk the dog all by myself this morning and that felt great!  Now I need to catch up on all sorts of projects at home, finish off back to school paperwork (it goes on and on...) for both girls and figure out what to do with my day!  What a wonderful feeling!

Older Sis is working on a service program for her new high school.  She and I kicked off the year by assisting with a festival at a local parish in honor of adults with disabilities.  Nadia and I blew up balloons, tons of them, and worked a craft table.  She wanted me to hang with her all morning, but that was okay.  She was wonderful with all the people we met.  I told her on the way home that she has been given a gift from her sister.  She is able to be around adults with disabilities and not be frightened or put off.  She sees them as people first and knows they deserve respect and to be valued just as we all deserve.  I told her she has a special ability that none of her other friends have at this point in their lives, and she should be thankful for that.  I am very proud of her, and I'm really looking forward to volunteering along side her on many different projects as the year goes along.

Thursday, August 26, 2010

Progress being made, but a sad day nonetheless

Today was our very last appointment with Marisa's lovely and wonderful OT.  First I'll state the progress portion of this post and then write about lovely Laine.  I wanted to give Laine the OT a keepsake made by Marisa.  I had some butterfly cardboard cut-out shapes, gluesticks, and squares of tissue paper.  I gave that to Marisa and also gave her a pencil to write her name and "from" on the back of the butterfly.  We sat down and I told her each letter to write, so F, then R, then O and so on.  Normally I would write the letter above and let her copy me below.  She doesn't trace over letters anymore but rarely does she write them spontaneously yet.  This time I just said the letters and she wrote them.  I'm so excited about this!  Writing her name has been an uphill challenge.  I won't say "battle" because she genuinely wants to do it but has struggled with it for a long time now.  So when she wrote the letters just at my saying them, I was thrilled.   When she was in public school briefly last fall (approx. 2 months), every day they wanted her to come in, get a pencil, sit down and write her name.  I kept telling them she wasn't there yet and that she would probably get frustrated with that task until she could master it on her own.  They finally acquiesced (ha!), and gave her a piece of paper with a capital M to start off her name.  Well, not surprisingly, she still was unable to complete that task.  The teacher did sit with her often to help her, but Marisa was just not ready yet to be able to write her letters independently.  It has taken months, working with me most days, to achieve that goal.  When I say this, believe me, I am not sad about that or comparing her in a negative way to other kids.  I am VERY proud of her achievements this past year and excited to see where we can go with the skills she has attained. 

Back to the OT.  This charming young lady has been in our lives for quite a while.  Her mother is also an OT with a local school district, and the family are members of our church.  I met her mom when Marisa was around 2 years old and she told me her daughter was available for babysitting.  So I hired Laine off and on to take care of Marisa back then.  After that year, Laine went to graduate school to pursue a masters in occupational therapy.  Then, about a year ago, I saw her mom again and she told me Laine had her masters and was now working in a local clinic.  I was in the market already for a new OT, and jumped at the chance to add Laine to Marisa's "team."   Laine worked with Marisa twice a month for almost a year, and she did a wonderful job with her.  Unfortunately, all good things often come to an end, and Laine is moving to Washington state to begin the next step in her personal journey.  We are very sad to see her go.  She had a very special bond with Marisa and that will be hard to replace.  The good news, though, is that Marisa has come a very long way in developing those fine motor skills.  She still has trouble with scissors but her writing and drawing are getting better, and her desire to work on fine motor tasks has improved as well.  All these things we adults, especially "typical" adults, take for granted, are hard won by our kids.  These are huge successes and it is nice to share them with talented, kind, and supportive therapists like Laine.

Friday, August 20, 2010

The best intentions, plus a road trip

I really did have the best intentions to post regularly on this blog, and to add pictures.  Oh well, the days just continue to fly on by.  Maybe, just maybe, if Marisa is successful in the first grade at her new school (Lord, just a wee little prayer request!), I can spend more time on this.  I am hoping to finally go through the piles and piles of printed out articles on Down syndrome, inclusion, behavioral support, advocacy, etc., etc., lying on the dining room table, in huge 3 ring binders on the book shelf and covering the desk in the kitchen.  Well, it's not quite that bad, but close.  The good news is that there are tons of resources out there and most are very useful.  The bad news is that I rarely find the time to actually sit down and read any of this stuff anymore.  But, then more good news is that one of the reasons I rarely find that time is that we are usually out and about, living our lives, with my darling child out in the community and mingling with "typical" peers at parks, talking to all sorts of people at the dog park, and hanging out with her sister and her friends.  It means that she is being "included" in our life and in the life of the world around her, and for now, that is the most important thing. 

The other part of this post is a reflection on the trip my older daughter and I took this past weekend.  We drove to Ashland and attended a play at the Oregon Shakespeare Festival.   This was our first time and definitely won't be our last.   She even suggested the trip a while back, and after I got up off the floor when she made the suggestion (she is 14 after all), I jumped at the chance.  My husband and I moved to Oregon from Massachusetts way back in 1991.  I read about the Shakespeare Festival that first year and had wanted to go ever since.   It is so nice to be able to check off your personal list of things to do something in the back or your mind for years.  And, the trip was definitely worth the 5 hour drive listening mostly to songs my daughter chose or letting her watch something on her portable DVD player while I drove in silence.  It sure would be nice sometimes if she and I shared the same musical tastes, but we don't tend to do that. 

We stayed in a B&B a short walking distance from the theaters.  The Innkeeper was lovely, our room was cozy and nice, and we even lucked out in having our own private bathroom.  Nadia was not keen on the breakfast part of the experience when she realized we might have to talk to other people, but she survived the experience.  She is not the social butterfly her sister is.   We spent the days walking through a large city park, shopping in a bunch of nice boutiques in town and trying out different, and all very good, restaurants.  We saw Twelfth Night in the outdoor Elizabethan Theater, and it was very well done.  Our tickets could have been better, but next time I'll know to snatch them up earlier in the year. 

This is the third Mother/Older Daughter trip she and I have taken since Marisa was born.  I took Nadia to Chicago in 2005 to the NDSS Conference, and we had a grand time there.  Then a couple of years ago we took the train to Seattle and spent 3 nights in a hotel across from Pike Place Market.  All in all that was a good trip, and we got to do several fun things, but Nadia came down with a nasty cold soon after we got there and shared it with me.  By the second day we were miserable, but we still look back on that trip fondly.  Marisa and her Daddy have a grand time when we're gone and I know the time Nadia and I spend together is priceless.  She is a freshman now in high school so we don't have very many summers left before she flies the coop.  I want to spend that time wisely, and as often as possible, on the road.

Thursday, August 12, 2010

Added layers of complexity

The title of this post refers to how I describe life with little Miss Marisa.  In so many ways she is just like most other kids out there, silly, affectionate, curious, demanding, and above all deserving of love, honor, and respect just like every other human being.  Where she starts to diverge from the "norm" is in that everything we do requires a little or a lot of thought before hand and often times a great deal of planning. 

When Marisa came home from 56 days in the NICU, she came with a G-Tube and 8 medications.  The meds covered the gamut from Synthroid for hypothroidism, which she still takes daily, to Septra to prevent a kidney infection, Zantac and Reglan for reflux & other GI issues, Prednisone for adrenal insufficiency, and 3 others I can't recall the names of or needs for right now.  I'm counting that as a good thing!  Over time the list of medication names, dosages and times to administer, stuck with a magnet on our fridge, got smaller and smaller until we finally whittled it down to just the Synthroid.   Our visits to the various specialists in the medical community and back and forth way too often to the pediatrician's office have whittled down too.   I am thankful that, at least for now and hopefully for years to come, we spend more much time away from the hospital and waiting in clinics all over town than we spent in them years ago.   But, I am also mindful that that is not the story for many kids and their families, and pray often for them. 

At 7 years old, Marisa is out past many of the initial medical concerns that plagued us in the early days.  Her G-Tube is long gone, we don't have a neurologist's business card anymore, and the cardiologist who last saw her when she was 2 years old, is just someone from our past now.  I pray every day that she does not develop Leukemia because I know that would return us to the world of many of the specialists we saw before.  They are all truly wonderful people, all of whom treated us and above all our precious child with kindness and grace; but we will be just fine if we never see them again.   Last year we were told Marisa could be considered a "graduate" of the Hematology/Oncology clinic at the hospital from her NICU days, but then we had a bit of a scare this spring with blood counts and she was put back on their rolls.   So back she and I will go next March near her birthday for an annual check-up once again. 

Although I am so thankful and grateful that most of her medical concerns have become distant memories, it would be nice to move on as well from several behavioral challenges.  I am hoping that as time goes by we can look back on these days, that all in all are pretty darn good, and be happy with how far she has come.  I am hoping to move beyond having to inform every new person in charge in every new situation about her quirks and her M.O.  I am hoping to be able to go out with her all over town and not need to either bring "back up" or make sure I have on running shoes so I can chase her down when her need to run kicks in and she is off down the street without warning.   I long for the day when I do not have to admonish her over and over and over again all day to do or not to do something.   I do believe that day will come, but can't see that proverbial light just yet.....  I do have faith that we will get there, though, and one day I will see this as time well spent, teaching her how to live and to be in community with the rest of the world, just as she and all other people with disabilities deserve. 

Wednesday, August 4, 2010

Repetition

Where does the time go?  I can't believe it's already the first week of August.  I always start out the summer with so many plans and expectations, and still the time just seems to fly on by.  When I started homeschooling Marisa I had a deep dread that our days would drag on and that I would feel lonely being home most of the day and spend my time looking at the clock and waiting until her Dad got home to make a much needed break.  Well, that didn't happen at all.  Our days flew by then too and I'd get to the end of the day and realize there was so much more I wanted to achieve within that particular block of time.  I am not the most organized person, and I know I could use some major help with time management, but we did still manage to get many  things done and keep making some semblance of progress.

The title of this post is "Repetition" because that is a fact of life that is even more relevant and necessary in educating our kids than what is needed for the "typical" student.  I knew I wanted to get back on track with our homeschooling activities during the summer so Roo would be able to retain what she had learned and use it when she goes back into the school environment in September.  We took many weeks off while pursuing other activities that kids do in the summer months - park visits, swimming, camps, etc., etc.; and now I'm trying to get serious about school work once again.   The problem with taking that break, and I did suspect it would be a problem but still went full speed ahead into other activities, is that we now have to go back a few steps and work on some skills that she had mastered but now struggles with again.  This is a known factor with our kids, and I need to not get frustrated, but it is hard to work day in day out on something, get it down, and then have to go back again instead of moving forward.  I know this is not uncommon with lots of "typical" kids, especially in the early school years, but I sure would like to be making progress at a slightly faster rate. 

That being said, I am still extremely proud of little miss, and know that she does try hard and wants to learn new things.   I am hoping/praying that the aid the school hires to work with her will form an immediate bond with her and figure out how to get her to work at her best level.  I've seen great things with my little Roo, not that I'm biased (!), and want her to show the world just what she can do.

Wednesday, July 21, 2010

Whoever said "the lazy days of summer"?

When I started this blog I thought I'd post something at least every couple of days.  It has not turned out that way!  I'm also hoping to find the time next week or in August to learn how to post images.  There just never seem to be enough hours in the day and I only have 2 kids!  I can't imagine how Moms out there handle summer when they have more kids than hands.

The good news is that July has been full of terrific experiences for Miss Marisa.  First it was the wonderful yoga class, then an intensive OT workshop that she thoroughly enjoyed, and this week is a nature day camp.  This week's camp didn't get off to a great start.  The location for the camp is a local park that Marisa and I have been to many times.  I knew there was the potential for her to embark on some solo hiking as she has a tendency to try to stray from the group.  I discussed this with the person in charge of the camp back in February when I registered Marisa for this week.  She told me they had plenty of staff and it wouldn't be a problem.  When I got there to pick her up on Monday, her group's counselor told me that she had run away at least 10 times.  She also told me that Marisa is so fast that one of the other staff members had to sprint to catch her.   I wasn't surprised that had happened but was hoping it wouldn't.  On the other hand, it is nice to hear that your child with multiple delays is a fast sprinter!  

The rest of the day, before bedtime, and the next morning, I drilled into her head the "rules" of camp : NO RUNNING AWAY!  STAY WITH YOUR GROUP!, and she dutifully repeated those words after me each time.  On Tuesday when I picked her up the counselor told me she did in fact stay with the group, but that she spent quite a bit of time pushing the other kids.  I can't say I'd call that progress.  So, my list of "rules" grew bigger on Tuesday.  Today seemed to go well unless the counselor just decided not to burden me with more bad news.  Two more days to go.   At least Marisa is happy to go there in the morning and seems to have had a good time overall when I pick her up.  I also love that they spend lots of times outdoors because that is something I've always enjoyed and it is so hard to get her big Sis to do the same.

This brings me to the other question I have been asking myself lately.  Marisa is fully included with her "typical" peers in the nature day camp.  There are also several options locally for camps and activities catering to kids with disabilities.   I've asked myself if I should sign her up for the specialized camps/activities, where she would be with kids more like her, or push her to include herself with the "typical" kids.  I've decided whenever possible, to push her, or at the very least try to find opportunities where there are both "typical" kids and kids with disabilities in each group.   I know this is hard for her at times but I still believe it is the best for her to prepare her for life when she reaches adulthood. 

Thankfully, after this week we have many weeks with not much scheduled.  Maybe I can finally get some photos up....

Saturday, July 10, 2010

Namaste

Some kids play all manner of sports when they're little.  Nadia played soccer for three years and had a love/hate relationship with it.  She looked so darn cute in her uniform, though.  She also played volleyball in middle school.  I'm trying to talk her into rowing crew with the Dragon Boats at her high school, mostly because I think it would be fun and something new and interesting to do.  She's not really a competitive person at heart, and I have mixed feelings about that.  Competition, especially when parents try to ingrain the drive for that in their kids at too young an age, is not always a good thing in my opinion.  The reason I have mixed feelings is that my dear teenager will sometimes limit what she tries because she doesn't want to compete in any way.  As with most other things in life, there has to be a middle ground. 

As for Miss Marisa, she is into Yoga.  A few years ago I bought her a couple of DVD's in the Yoga for Kids series, created by a former Montessori teacher and current yoga practitioner/teacher who works primarily with kids.   I did some yoga years ago and enjoyed it and thought I'd give see if my little one liked it.  Well, with the first viewing and practice of the exercises, Marisa was hooked.  She asked for those DVD's almost every day for months.   When I heard about a class for kids ages 7-12 with the goal of helping them calm themselves and gain focus, I knew that was for us.   I drove the half hour each way from Tuesday to Friday this past week, and it was well worth the commute and the class fee.  The two women teaching the class are probably the most "calm" people I've ever met.   I need that around me at times because I can often feel my whole body and mind spinning off kilter and out of control.  Being around the teachers for just a few minutes at the beginning and end of each session was a little bit of therapy for me!  Talk about getting more than your money's worth. 

There were 5 girls in the class and it seemed to me, with verbal reinforcement from the teachers, to be a very supportive and kind group.  Marisa was by far the youngest but they just took her in and she was able to show her strengths and easily became part of the group.  It was a wonderful experience and I would do it again in a heartbeat. 

We've had our share of challenges going out into the community.  We even bought a leash, in a size too small for her that we made work, because Marisa was having more fun running away from us than looking at the animals in the zoo in Hawaii.  So, this yoga class and the benefit of doing something in a group, the expectation of following the teachers' instructions, and the need to walk from the car down the street, into the studio, and back to the car again, were all very valuable skill-building experiences for her.  There is hope, and we are having more, for want of a better word "normal", days than not now. 

And I have to add that the other benefits to Marisa's yoga class were the great coffee shop and lovely little bakery down the street!  That made Mom and big sister happy to hang out while class was in session.

Thursday, July 1, 2010

The Kindness of Strangers

We went to Hawaii, to Oahu specifically, from June 22 to June 28.  We had a great time and soaked up the sun that we don't see much of right now in our neck of the woods.  We went to the Honolulu Zoo, Pearl Harbor, the Dole Plantation, took a drive around the island and spent the rest of the time at the resort.  Now we want to go to Maui, but will need to pay off this summer's expenses first!   I want to start adding pictures to the blog but need the expertise of either my techy husband or my teen whose computer skills are way ahead of mine.  I got some superb shots in Hawaii, many just random pictures of the vegetation because it was so beautiful. 

My little one was a trooper on the plane both ways, only getting antsy towards the end of the flight.  She really loves to travel and calls every place we stay our "new house."  She loved the resort and enjoyed smiles from many strangers; but then she is usually the object of attention, in a good way (!), from people when we are out and about.   One little thing that happened that caused me to reflect on the kindness of strangers was at the airport when we were waiting to board the plane for our return flight.   Marisa is 7 so she doesn't qualify for the parents traveling with small children perk of boarding early.   It was taking them a really long time to get through the initial stages of boarding for some reason, and we had already been at the airport for over 2 hours, so we just wanted to go get our seats and struggle to put all our carry-ons in the overhead bins.   While we were standing in line waiting for the go ahead, an airline staff member came by to check on the status.  He was a tall, quiet man with a kind smile.  He looked at Marisa and asked how old she was.  At first when I said 7 he said, "Oh." and stepped back to talk to another staff member.  Then he came back to us and told us to come with him.  He walked us down to the gate, smiling at Marisa the whole time.  When we got to the gate he spoke to the person checking our boarding passes and then he asked me if we would like to move closer to the front of the plane (our 4 seats were in row 40).  I told him we were fine where we were, but thanks anyway.  He told me he had brought us down early because once they started calling for general boarding, there would be a rush, and he wanted to avoid our having to deal with that.  He was a true gentleman.  It made me wonder if he has a personal connection with a person with a disability because he seemed to have such grace about him.  I'm all for treating people with disabilities as much as possible like they are just like everyone else, because in all the most important ways they are; but I don't mind kind strangers giving us a little extra help at times.  It reminds us of the common bond between all people and as I always tell my "typical" teen, there are far more kind people in the world than unkind ones.

Friday, June 18, 2010

New Blog Name

I changed the name of my blog from "Natural Curiosities," to "Wonderfully Made."  I only have 1 follower so far (thanks Patti!), so I guess I don't need to broadcast the news.  I changed the name even though my teenage daughter chose it, after vetoing all the other ideas I had for names, because the old name just didn't quite fit right with me.  My little one is not a "curiosity," by any stretch of the imagination, and I don't want anyone taking offense with the title, especially when we all share the burden of society's impression directed toward our wonderful children.  I liked the old name at first and also liked that my older daughter wanted to help, but now I feel that the new name suits me more.  Our kids, all of them, are truly wonderfully made.  All are precious and all deserve a place at the table of inclusion. 

Wednesday, June 16, 2010

Fear of the Known

My former 8th grader is officially a graduate of the lovely school she and most of her classmates attended for 9 years.  They all had their ups and downs but all in all they all felt the love and support of the admin., faculty, and staff of the school each and every year.  I told my graduate that she should feel truly blessed to have had this experience.  Now for the "fear" from the title of the post.  My little one is going to go to the school in the fall as a 1st grader.  She has now been homeschooled since November so she has been out of the classroom routine for quite a while.  When she goes to school in the fall she will have a one on one aid for half the day and then will be included with the rest of the kids the rest of the day.  I am fearful about that portion of the day because even though my lovely daughter has made great gains the past year in all "domains," I can still predict that she will have issues when she is dealing with the portion of the day with no additional support.  She is very social, a good thing normally, but that can be detrimental when she is trying to be social with the other kids during instructional time.  I'm just not sure the school is ready to deal with her and her tendency to distract others and refuse to cooperate.  Her receptive language skills are really good most of the time and her expressive skills are getting better all the time, but her willingness to be lead to comply when she doesn't want to needs major improvement.

So, I'm hoping to see more maturity developing over the next few months and to work with her on staying by my side when we are in stores or other public places; on sticking with a task as long as she can; and on not becoming a distraction to the other kids just because she has decided or felt compelled to check out. 

I've seen her achieve a lot in the past few months, but am still not at the point where I go forward planning for the fall with no trepidation.   Wish it could be so, but it's not. 

Sunday, June 13, 2010

Looking forward

We've been extra busy over the past week preparing for the end of my 8th grader's school year and her graduation from the school she has been in since Kindergarten.  Last week Marisa attended the evening performance of the 8th grade school play, Cheaper by the Dozen, with us, and she did really well.  There is one scene with a cheer in it and she mimicked that beautifully, and towards the end she started repeating the lines, but all in all, she was a very good audience member and made it through a show that had nothing to do with Veggie Tales! 

Friday night we attended the first of 2 parties for the graduates and their parents.  That was great fun and we are looking forward to the next one.  A dear friend of mine offered to babysit both nights - what a gift!  With no family members in roughly 3000 miles, getting a sitter is often impossible and either my husband or I end up sitting most adult or adult/big kid only events out.  The Moms at the party Friday night were amazed that I even made it.  I'm so glad I did because they are all great people and I will miss the ones who are moving on now that their kids will be gone.  Since we are going to give the school a try for Marisa for 1st grade, I'll still see most of the parents for a few more years, so that made the event less bittersweet. 

Graduation is Tuesday night and even though it's not as big a deal as graduating from high school, the kids are anxious to leave the shelter of the school and school family most of them have been in for 9 years, and go out into the larger world.  Nadia is going to a top rate high school, located in downtown Portland, and we're hoping it will be a challenging but overwhelmingly wonderful experience for her.  I'm excited about the potential to learn "life skills," in riding the city bus and going to school in an urban environment.  We need to remember that the need to acquire life skills, even though the term is jaded in my eyes, is necessary for all our kids, not just the ones needing extra help.

So, this coming week will be another busy one, filled with some sadness, but lots of excitement and hope for the future. 

Wednesday, June 9, 2010

Fighting the Good Fight

I must admit that the R-word was not really on my radar before I had my sweet little miss.  I'm happy to say that my righteous indignation towards anyone belittling a person with a disability for any reason, has grown exponentially since she came into my life.  I'm thankful for that.  It's not that I didn't care before, it's just that in my little corner of the world there weren't that many people with disabilities that I interacted with enough to take the time to take notice.  Or at least not "noticeable" disabilities.  I don't know why that was the case because now I seem to see people everywhere and it is not at all uncommon for me or someone else in my family to spot a kiddo with Down syndrome out in the community so much more than before.  I consider that new enlightenment a blessing.

What doesn't always feel like a blessing is when my teen is faced with the R-word coming from kids in her class, the hurt she feels and her struggle to figure out what to do about it.  I have talked with her many times about this and what we came up with is this : she of all the kids in her class has the absolute right to get in another kid's face and tell them to stop it, that using that word is hurtful to her and that it's just not okay to use even as a joke.  These are 8th graders, mind you, and they are at an age when they are at the crossroads of truly being able to understand the ramification of their actions.  I have known these kids for years and I know in my heart that the kids who have thrown the word around did not intend to use it to hurt my child, her sister, or the other beautiful young lady in a lower grade in the school who has Down syndrome.  They're not really mean kids, they just don't think.  

When my teen heard a boy in her class use the word as an insult hurled at another (typical) boy in the class, she told the boy to stop it in a loud voice.  She told me that she doesn't think he heard her and that felt worse than even hearing the word spoken because she had finally gotten up the nerve to speak up and her words weren't heard.  That is a huge step and I'm proud of her.  If we do nothing, nothing ever changes.  If a person is not called out in regards to their actions, there is little hope they will change on their own, unless, God willing they grow up and out of their immature ways. 

Not the best way to wrap up her many years at our nice little parish school, but a good lesson nonetheless.  Her teacher gave her the opportunity to talk one on one with the boy at the end of the day, to express how she felt and to accept his apology.   Apparently he was really upset at what his "joke" had caused when he saw her pain.  We can always hope that change can come and that kids can learn from their mistakes and become better people as a result. 

Sunday, June 6, 2010

We've come so far.... and a step back

When we came home from the NICU Marisa was 8 weeks old.  She received a G-tube for feedings in the week before her discharge, and Rx's for a multitude of meds.  We whittled down the meds over time to just Synthroid (for hypothyroidism), and kept the G-tube until she was 16 months old.  Over that time she gradually received more and more nutrition by mouth.  In most cases the stoma for the G-tube seals naturally with no need for a surgical closure, but in Marisa's case, it was under the knife again to have the site sealed.  Because she was born with Transient Myeloproliferative Disorder (TMD), she was followed by the Hematology/Oncology department at one of our childrens hospitals, starting with every other month, then every 3 months, every 6 months and finally once a year until she "graduated" at age 6.  When her wonderful doctor told me she did not have to come back unless she became symptomatic for Leukemia, I even shed a tear.  It is hard to walk away from people and places you've known for years, even if the association isn't the best.  The doctors, nurses and related staff in that clinic are great people and we had grown fond of them over the years. 

Marisa's thyroid function is still tested every 6 months via blood draw, and I have requested a CBC with diff be done with her thyroid screen just to stay ahead of the game (hopefully) if her counts awry.  Well, a few months ago, her WBC and MCV veered out of the normal range.  To make a long story short, we are now back to being followed by the Hem/Onc clinic again.  We will be back in their office next March for a check up.  When I read blogs about kids currently battling the evil disease of Leukemia, I can't even express how thankful I am that Marisa is not in that group, but I do wish we could have moved on for good from being a patient at Hem/Onc.  Great people, but not a place I want to go.....

Friday, June 4, 2010

Homeschooling ups and downs

As we near the end of the school year and the imminent graduation of my "typical" daughter from 8th grade, I am really in need of a break from the sometimes stresses, and sometimes joys of homeschooling my Kindergartner.  When she is "on," she is really, really on.  She picks up some concepts so easily it's amazing, while other times it is truly like pulling teeth just to get her to stay focused and on task.  She has all the classic traits of "non-compliance," and uses every antic she has in her arsenal to try to get Mom to throw up her hands, give up and walk out of the room.  Well, I don't give up, but there are times, more than I wish to say, that I really want to just get up and walk out.   I pulled her out of our neighborhood public school because they said she was not making "any academic progress," and she was having difficulty with compliance and actually sitting down and working on almost any type of academic work.  I formally requested a paraprofessional to work with her one on one (for a portion of the whopping just over 2 hours of am Kindergarten), but was formally turned down.  I gave it a shot, dutifully dropped her off with hope each morning and picked her up with fingers crossed later on each day; but almost every day came with bad news from the teacher or staff and a truly wonderful little child spinning further and further out of control.  She also did not want to do any work with me after school to try to offset the deficits. 

So, I made the decision to homeschool for the remainder of the year because I knew for sure that the ability was there and that she would benefit from one on one attention and guidance.  I know now that that is absolutely the case, but I also know that I cannot foresee how each day will go.  Will she sit for me and work diligently and fruitfully, or will we end up in a mega battle of wills with little to show for our school time for the day?  I am trying to find that balance between being an effective teacher and not micro-managing her every step of the way.  Is there a magic pill for that somewhere out there?

We are in the process of preparing to place sweet Marisa in 1st grade at our Catholic school in the fall, the same one dear Nadia will graduate from in a few days time.  They want my darling child and have listened patiently to my concerns.  She will get her one on one aid (at our expense!) for the academic subjects, and will participate in a program of partial inclusion.  Not quite what I was hoping for when I joined the Disability community and learned of the great strides made through the years in achieving full inclusion for our kiddos, but I have come to realize that just as no child is "one size fits all" in their wants and needs, that is even more true for those gifted with that extra chromosome. 

Thursday, June 3, 2010

Knowing the NICU

When we got the word that Marisa would be going to the NICU after crashing in the day treatment area, I was actually relieved.  You see I had been there before.  When her big sis Nadia was born in 1996, she contracted Salmonella (from me! - that's a long story....), and she ended up being transported in an incubator in an ambulance from her birth hospital to one of our local childrens' hospitals.  When she got there they had no idea what was wrong with her.  She was spiking a high fever, bleeding rectally, and unable to eat.  By the 6th day, they had grown cultures, ruled out all sorts of other possibilities, and narrowed her diagnosis down to Salmonella.  She and I became statistics in an outbreak due to tainted alfalfa sprouts in the state of Oregon.  So much for eating healthy food!  I caught the food poisoning sometime in the final 2 weeks of my pregnancy, and Nadia caught it from me.  Talk about feeling like the worst mother who ever lived! Ironically, I never did have the symptoms usually associated with Salmonella.  I had an upset stomach a couple of times, but I was between 39-40 weeks pregnant, so that was normal. My OB/Gyn and I just laughed it off at the time and I wasn't tested for anything.

I tell people that I will never have the experience of having a baby and bringing them right home.  Both of mine had life-threatening illnesses and roller coaster rides in the NICU.  The blessing in our experience with Nadia, though, is that I already knew what the NICU looked like (same hospital for both girls), and knew what to expect when I got there.  I wasn't with Marisa when she crashed because Adam had taken her for her appointment with the Hematologist and I stayed home with a sick Nadia.  I didn't get to the hospital until the next morning.  My 7 year old needed me first.  So, when I walked in to the NICU I was prepared to see my little baby hooked up to all manner of tubes, IV's, monitors, etc., etc.  Not what any Mom wants to see in their worst nightmares, but I knew she was in good hands.  The Neonatologist who admitted Marisa was even the first doctor to examine Nadia 7 years before.  What a small world!

Monday, May 10, 2010

Mother Guilt - Time for Me

I just started this blog, don't have any followers yet, and I need to take a break for a few days.  I'm having surgery tomorrow morning to fix an issue caused by a varicose vein in my right leg.  The varicose vein was a "gift" from my lovely little one during the pregnancy, almost 8 years ago.  About 7 months ago I started having pain in my knee and I started with an Orthopedist.  He didn't find the cause but wrote me an Rx for PT and I ended up going to a friend who works in a clinic not far from my house.  In spite of the pain, it was wonderful to have some down time talking to, and being worked over (!), by a lovely woman whose company I truly enjoyed.  Unfortunately, the pain still didn't go away and my leg started to swell.  Cutting to the chase, I ended up being diagnosed with Chronic Venous Insufficiency in my right leg and I'm going in for surgery tomorrow to correct the problem.  The title "Mother Guilt" has to do with the fact that I will probably not be in the mood to homeschool the little one the next few days and I hate the thought of losing valuable time.  "Time for Me" is what I need right now, though, and get so little of in the course of our crazy days.  I know any other Mom reading this blog eventually will be able to relate!   So, I'll take a break, attend to a personal issue and then carry on with the story of the little one's early days/months and go from there.

Friday, May 7, 2010

More or Less

Taking a quick break from writing the story of little one's first months.  I've been homeschooling her since last November.  The reason for that will be told in an upcoming post because it's pretty involved.  Suffice it to say that I got to the point of realizing that she could continue on in her inclusive Kindergarten setting without making academic progress and not being supported by staff to the degree she needed, or I could be proactive and take on the job myself.  I'll write much more on that later.  This week we've been working on the math concept of "more" and "less."  What I wanted to write about here is the understanding that all young children and especially young ones with extra chromosomes, need a lot of time to process new information and the learning curve is not straight but can be very bumpy.  Two days ago she seemed to have mastered the concept of more and less, using pictorial representations and also manipulatives.  I drew 4 stars on one side and 7 on the other and showed here that one group had less and one had more.  We did this over and over with varying quantities in each group.  Then we used the little counting bears and also colored disks.  After teaching her for a while I started "testing" her and she quickly got most of them correct.  I was thrilled.  Yesterday morning we did the activity again and lo and behold, she missed every single one.  She kept saying "less" for the group that had "more."  My thrill from the previous day was gone.  When this sort of thing happens, and trust me, it happens pretty often, I have to check my emotions (hard for me!), and get on with the task.  It is very difficult not to get overwhelming emotionally tied up in your child's ability to learn.  But, when this happened, I put away the materials and knew I'd come back to it later.  The day went by, we had a playdate with her old babysitter and her 19 month old (cute as a bug!), and then late in the afternoon I brought out materials for more and less again.  Guess what?  She got 9 out of 10 tries correct!   I'm not convinced she has mastered the concept yet, but we'll keep trying.  It takes faith in your child and motherly perseverance, but our kids can achieve much in life!  And, whether or not we continue on the homeschooling path, I will always treasure the blessing of being the first person to witness my child grasping new concepts and accomplishing a goal.  That truly is priceless.

Wednesday, May 5, 2010

Home then Back

So we had the potential diagnosis of Down syndrome, which was confirmed via the genetic test by the end of her first week; and add to that the life-threatening version of TMD.  Little one came home from her birth hospital and was at home for a week, then she was admitted to the NICU at a different hospital after crashing in the day treatment area while they were trying to do a blood draw to check her CBC.  This first week could be multiple posts in and of itself but I'm just going to move on and write an abbreviated story of her 56 day stay in the NICU.  She would have been admitted to the PICU because she had gone home in between her birth and the time she crashed, but there was an RSV outbreak in the PICU so they sent her to the NICU instead.  Side note : ironically, her sister had a 6 day stay in the same NICU 7 years earlier when she was born, so when little one was admitted, I knew exactly what the area would look like.  Thank heavens for small favors. 

The much abbreviated version of her stay in the NICU at Legacy Emanuel is as follows : admitted at 9 days old with critically high white blood cell count and after "crashing" in the day treatment area.  At just over 2 weeks old, she developed a tear in her duodenum which resulted in emergency surgery.  At around 3 weeks of age, she was given low dose Ara-C for 4 days, a chemotherapy drug, to try to reverse the climbing WBC, after several complete exchange blood transfusions had little to no effect.  She had a broviac catheter placed to receive the chemo med and for blood draws and other meds.  The chemo did the trick and ultimately put her TMD into remission (thanks be to God!), but then she still had to recover from her surgery, have daily blood draws to check her counts, be seen by nearly every type of specialist in the pediatric universe :  Neonatologist, Hematologist/Oncologist, Cardiologist, Endocrinologist, Gastroenterologist, Audiologist, you get the "gist" of it.  I guess we missed out on Pulmonologist and several others, but who's counting!  There's nothing quite like being privy to a heated discussion between your newborn's GI doc, Hematologist and Neonatologist over how much the initial disease had affected her liver, whether she needed a liver biopsy and whether or not she'd be a candidate for a liver transplant.  Oy!  I felt like I was having an out of body experience, hovering over my child's bed and yet not recognizing that tiny body hooked up to all those wires as mine.  Another thanks be to God, her liver made a full recovery and she didn't need the transplant or even the biopsy. 

While waiting for a full recovery from her surgery and praying for the blood disorder to go into remission, she developed what is known in the medical world as "ascites."  That is fluid build-up from the liver not functioning properly and the nurses described her abdomen as "angry."  You couldn't miss why.  She was bloated and stretched almost to splitting, at least it seemed that way.  So she also got to have daily pokes with a huge syringe to draw off the liquid.  Not a pleasant site for any Mom to witness.  I'm sure my husband was thankful to have his day job.  Then as the chemo promised to do, it sent her WBC crashing into the realm of neutropenia and landed her in isolation to ward off infection and prevent sepsis.  MEDICAL DISCLAIMER inserted here : I a not by trade a member of the medical community.  I just learned more medical vocabulary than I ever would have wished to in a few short weeks after my lovely daughter's birth.

The little one proved to be a prize fighter and she escaped the clutches of Death several times during her hospital stay.  What ended up keeping us there longer was the need to get enough nutrition into her weak body.  We chose the G-tube option and that was her final medical procedure as a neonate.  We came home on day 56 with many good and many painful memories, and lots of equipment, plus a crash course in some basic medical training such as how to schedule and administer 8 different meds a day and how to feed our child using a breast pump and a variety of tubing.  To be continued.....

Tuesday, May 4, 2010

From the Top

I'll start working on telling my little one's story, from the time I found out I would be blessed with daughter number 2 at age 40(!), through a relatively easy pregnancy and labor/delivery, to the devastating (at the time) news of what came with her beautiful little baby package, and over time get us up to now.   Let me start by saying that we've certainly had more than our fair share of ups and downs, just like the writers of so many other blogs I've read, but all in all I wouldn't trade our experiences for anything.  Even in the midst of terrible darkness and fear, plus anger and anxiety and total despair at times, my life would be so much less without my wonderful child in it and without the people I've met since she was born.  God is good and He has seen us through so much so far, and we know He will stand by us to the end. 

I won't go into the details of my pregnancy with the little one or even the delivery except to say that both were really pretty easy over all and until she burst forth unto the world, we didn't have any concerns beyond what in the heck was I doing getting pregnant at such an "advanced maternal age"!   We had been an only child family for so long, not necessarily by choice, that we were shocked and unsure when the pregnancy test came up positive in the summer of my 39th year.   We had considered foreign adoption a couple of times but when I thought I was ready for that my husband wasn't, and then by the time he decided he was ready, I was already so caught up in our only child's life and making plans for my emancipation back into the working world, that by then I wasn't keen on the idea anymore.  Got to take a moment here to say how much I do admire families who adopt!

Back to the matter at hand - I didn't have any prenatal testing beyond an ultrasound at 20 weeks.  My OB/Gyn and I shared a laugh over the fact that I was finally, and unexpectedly, pregnant and then she asked me what I would do if there were a problem.  I said I would do nothing and we would keep the baby no matter what, and she advised me not to have the testing.   The ultrasound did not cause any red flags and all we knew from that was that we were having another girl.  So, life went on as usual until almost the 39th week.  Little one was born 9 days early, and weighed in at 5 lbs, 7 ounces. A little time lapse here.... the question was, did she have Down syndrome or did she have congenital Leukemia, thanks to a critically high white blood cell count on repeated CBC's.  By the end of her first week out of the safety of the womb, it turned out she in fact had both!  Well, in truth, she did not have full blown Leukemia, but she was born with Transient Myeloproliferative Disorder, or TMD, also sometimes known as Transient Leukemia for the way it presents.  Many kiddos with TMD go into remission without treatment, but a smaller percentage need pretty drastic intervention, such as receiving chemotherapy in the NICU.  That was a first for the docs and nurses at our local hospital.  Our family likes to give them something to talk about for years to come.  No run of the mill life threatening illnesses around here.  To be continued.....

Sunday, May 2, 2010

My How Time Flies

Today was a blur and I'm feeling guilty for not spending enough time with the little one.  I am homeschooling her during the week, more on that soon, but the weekends go by really quickly with errands to be run, and chores to be done, plus walks for the pup, mall runs for the teen, church, horseback riding therapy, and piles and piles of laundry.  So here it is almost 10 pm where I live, and I have no curriculum plan for the week yet again.  I also promised myself that I would try to post a new comment to this blog every day, but that might not have been a realistic goal given that the clock moves faster around here, or at least it seems to.  The good news is that since I was gone most of the day, she got more quality time with her Dad, and that's always a good thing.  Now, if I can just hit the ground running tomorrow and not hit the snooze button....

Saturday, May 1, 2010

Embarking on a New Journey

Okay, so I have to admit I have been what is called a "lurker" in Internet lingo. I've been reading many wonderful blogs telling the life stories of some really great families and their kids with disabilities for a while now, and I finally decided it was time to add my own blog to the list. I'm hoping that keeping this online journal will be therapeutic for me as I struggle daily with the demands of being Mom to one child with fairly significant developmental delays and moderate behavioral challenges, who is also one of the brightest constellations in my universe; and dealing with the ups and downs, laughs and arguments shared with a bright, amazing teenager who is trying desperately to grow up too soon. I'm homeschooling the little one for now and driving the teen all over creation; and each day brings its own set of rewards and challenges. Throw in trying to create a homemade dinner now and then for the husband and caring for a crazy pup, and I'm pretty worn out at the end of the day. So, I hope to use this blog as a way to put words to our experiences and a way to connect with the big Internet community out there of families who can truly relate to what we've been through and our hopes for the future.