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. 

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. 

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. 

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. 

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.....

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. 

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!