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.

Thursday, November 17, 2011

Long time no hear from

Here it is almost Thanksgiving, and I haven't posted anything for months.  So much has happened, and I've had so many thoughts rolling around in my head, but blogging just hasn't been at, or anywhere near, the top of my list of things to do.  

We had a great August and spent most of it in Connecticut and South Carolina with family.  My brother's family goes to Hilton Head Island every summer and we decided to join them there this year.  We went once before, when big Sis was little, but this was the first time Roo got to go.  We had a great time!  My brother's kids, both in college, were there, with their boyfriend and girlfriend; and my sister-in-law's parents joined us as well as my Dad, just a few months out from major heart surgery.   Roo got to spend tons of time in the pool, and she also loved the dolphin cruise, tubing, and even parasailing!  Roo and I went up in the parasail over Calibogue Sound together.  It wasn't scary at all and we both had huge smiles on our faces the entire time.  The only moment that had me worried was when we were high in the sky and Marisa said, "Let's jump!"  Mind you, she was very firmly strapped in, but I didn't expect her to say that.  She is so much fun to travel with now.  She really gets into whatever we're doing and seems to be up for anything.  I love that about her! 

September brought a new teacher, new routine, and a different door to go in at school.  She is now in 2nd grade, but until recently she would say she was in 1st grade if you asked her.  I realized that was wishful thinking on her part because she LOVED 1st grade and she also loves the former Kindies who are now in 1st grade.  She likes to stop by the classroom and say hello every now and then, and they welcome her. 

Sadly, one of the reasons I haven't written anything in a while is the other craziness we've been going through almost since school started.  Just over a week into the school year, Roo contracted pneumonia, and it took a long, long time to resolve.  She missed at least 8 days then, and last week her illness came back!  I think the bacteria weren't totally killed off the first time, even with 3 different antibiotics, and that her illness just lay dormant waiting to rear up again.  Her pneumonia is settled back in the exact same area in her left lung as before, so that adds to my theory.  She has been out since Thursday last week and it's already Thursday this week.  When she goes down, she really goes down.  But that said, she has been at home the whole time and we've actually had some really lovely moments hanging out together.  She has continued with her daily out-loud reading, even if she has to stop for coughing fits now and then, and we had a great game of Go Fish a while ago.  So, it's not all bad.

And, the great news is that over all, Roo is doing really well this year at school!  She has the same aid with her and is making progress in all areas. Her reading is really picking up speed and the best part is she really likes doing it!  She isn't at grade level, but that is not my expectation.  My expectation is that she will continue to make progress over time and attain the level in all areas that is right for her.  This will be done with ample support but also with knowing when to let her soar on her own.  She has shown this ability over and over again and her strengths are many.

The other reason I've not been doing much in terms of my own personal writing lately is because I am the Publicity Director for Roo's school's Auction this year and it is a big job.  It's fun and I am even learning a thing or two in upgrading my computer skills, but I didn't realize how much time the volunteer job would actually take.  At least I can do most of it via email, so that has helped me deal with the load. 

I'd like to think I could actually put down in words on this blog all the thoughts rolling around in my head and keep up to date in chronicling my children's lives, but I don't have the best track record thus far.  If anyone still looks at this blog ever, please wish me luck!

Thursday, July 21, 2011

Quality of life

I guess I'll just have to consider myself an intermittent blogger.  Guess that's one reason why I have so few followers, though I'm thrilled to have those of you who do follow me!   I wanted to use this tool as a means to journal, a place to record good times and not so good, and a means to write about things that are important to me.  Well, daily life and all its distractions seem to get the better of me more often than not.

I did feel compelled, though, to write a post about an article I saw on a link from http://mdbeau.blogspot.com, or Michelle's Big Blueberry Eyes blog about her beautiful daughter with Down syndrome.  Michelle's post brought attention to the news that Denmark wants to be a "Down syndrome free perfect society."  I say the road to that mission is the road to becoming heartless and soul-less.  I left a comment on the original article saying that I would take any person with Down syndrome I have ever met, and there are many, (and I'll go further and say any person with DS I've "met" through reading so many blogs and seeing so many lovely faces out there on the Internet), over any person who believes they do not have a place in society.   Our innermost being is reflected in how we see others.  If we devalue others just because we feel they are less than, or not "perfect,"  what does that make us?  To say it is a character flaw to deem oneself above others is an understatement.

Life is not perfect.  None of us mere humans are perfect either. And when a group of people believe they can create a "perfect" society, they prove themselves to be truly less than, for they have lost the ability to perceive beyond what they see or what they assume to be.  They have lost the ability to know what it is to truly love for love's sake.  To look into the eyes of someone and see the face of God.  They have lost their own humanity in the process of trying to eradicate people with Down syndrome, and it is a sad and slippery slope downward once that line has been crossed. 

Of course, the fallacy in all this as well is that as hard as they may try, they will never have a "perfect" society.  I put quotes around perfect, because I'm perplexed in this instance by wondering what that is supposed to mean.   People will still fall victim to disease, to poverty, to loneliness and despair.  We cannot predict and have no say over our own future, but we all share suffering in common, even if it comes in different forms.  People with Down syndrome do not "suffer" from it.  What they suffer from is having to live in a world in which they are often misunderstood, too readily judged and underestimated, and not even allowed to see the light of day all too often in countries that should be advanced enough to know better, and this of course includes our own.

I cry at the thought of a world without Down syndrome, or without people with other types of disabilities. They are part of our human experience, and add so much to our lives.  They deserve to be in the world for the world would be so much more bleak and imperfect without them.

Monday, June 27, 2011

Time flies whether or not you're having fun

Roo's Big Sis had a relapse of her medical condition the last couple of weeks of the school year.  It was probably triggered by a virus that led to her missing multiple school days, which led to extreme stress & anxiety over missing said school days, which ultimately led to the relapse.  Her school was terrific and jumped right in with an accommodations plan.  I had not asked for one previously because she was in remission all of 8th grade and most of 9th, but they offered and we took it, just to help her finish out the year.   The acute pain cycle subsided fairly quickly once the pressure was off, but now I'm dealing with her reticence to follow through with a treatment plan.  Her plan consists of 2 hours of intensive PT and 2 hours of OT each week, along with a visit to a clinical psychologist for cognitive behavioral therapy.  Not exactly what she had in mind for enjoying summer break.  She will get to see friends a bunch and we are still planning on going on vacation later in the summer, but it won't be as carefree and relaxing as she had hoped.

Roo had yoga camp last week and that was a wonderful experience.  She also went to a dress up birthday party for a girl in her class.  She does pretty well at parties for a while, but then she usually excuses herself and goes off to play in the girl's room, invited or not.  When I got there to pick her up, Roo was in the girl's bedroom, playing on the floor with dolls with the little girl's Swedish grandmother.  That was quite lovely, even if she was excluding herself from the party downstairs.  I always have to remind myself to not over think what she is doing.  She did enjoy seeing the girls from her class.  She had a good lunch and some birthday cake, and she stayed with the group for most of the party.   These are all pluses.  If she needs to leave the pack for a bit, so be it.  No harm done.   This week brings a martial arts themed birthday party for a boy from her class.  It will be interesting to see how she does in that environment.  She loves being active even more than playing with dolls.

All in all this summer has been pretty good so far, even with all the added appointments for Big Sis.  We've still had some nice experiences, some decent weather for our neck of the woods, and lots of down time.  My goals for the summer are to downsize, downsize, downsize and finally get rid of piles and piles of stuff we no longer use, if we ever did; and to get the yard back to looking like someone actually lives in this house.  Even if that's all I do, I'll feel I've accomplished something when I'm done.  Time does fly, and I'm hoping to have something to show for it.

Friday, June 3, 2011

The sadness of transitory relationships

Today was Roo's last day at the PSU speech clinic for this school year.  The clinic offers speech sessions run by students in the graduate SLP program, with supervision by a graduate advisor (and the parent) in an observation room.  We were on a wait list from last spring until this past January and then we were offered a spot.  We jumped on that.  The first term she had Karissa, a wonderful 20 something graduate student.  She did a great job with Roo, even from the start, but Roo took a little while to warm up and start towing the line.  By the end of that term Roo really loved Karissa and we were both sad to see the term end.  I wondered what the new grad student would be like when we started the next term after spring break. 

This term we had another lovely 20 something graduate student named Marjorie.  The only thing I would say even remotely critical about Karissa is that she was at times not firm enough with Roo.  I told Marjorie that when we talked before the term started, and she was on top of things from the get go.  She wasn't too harsh with Roo, but she quickly got the upper hand, in a loving way.  Both students were excellent in working with Roo, patient with her as necessary, and open to trying lots of different approaches while keeping the sessions fun.  The added bonus this term was that there was a younger girl in the room next door having speech therapy with another grad student.  After a few weeks, Marjorie and the other grad student decided to let Roo and the other girl play together with clinician led games at the end of each session.  Now we are planning to get together with the other little girl and her family over the summer break.  Not bad - social skills training while receiving speech therapy.  I'm all about "multi-tasking."   

I was sad to see this term end because we grew to love Marjorie just as we had Karissa.  We will go back for the fall term and I'm anxious to meet who is placed with Roo then.  So far so good though.

The other person I grew to like very much was the Clinic Director.  She was the graduate advisor for the women who worked with Roo both terms.  Every time we were there, she would come and sit with me in the observation room for 20-30 minutes at a time, and we soon started to chat about all sorts of things, mostly about Roo and aspects of her disability, but often about far-ranging topics as well.  I really enjoyed talking with her and had hoped to strike up the conversation again next fall.  Today she told me she is retiring next week after 21 years working at the clinic.  I was sad to hear and told her I would miss her.

I always have a feeling of loss for a while when we are switching therapists, even if I know whom we will be seeing next.  This idea of transitory relationships isn't an uncommon thread throughout our lives.  We graduate from school, switch jobs, move out of state, etc., etc., and have to say goodbye to people we have grown fond of; but I have often felt an extra bond in relationships with Roo's therapists.  These are people who have chosen to and have trained hard to work with kids like mine.  These are almost always kind, welcoming and supportive people who totally have my child's best interest at heart.  You don't become a PT, OT, SLP to pursue fame and fortune.  You do it to make a difference in the lives of those who would have a much harder struggle without help.  We have been truly blessed by the people who have come into our lives to help our dear Roo, and even though there is sadness when the relationship ends, it has always been worth it.

Tuesday, May 31, 2011

The wonderful world of Disney

We went to Disneyland for the Memorial Day weekend.  Flew down on Friday and back on Monday and did the whirlwind tour of Disneyland and Disney's California Adventure.  Spent tons of money (of course) but it was well worth it, for the smile quotient if for nothing else.  Roo had a grand time.  She loved the character breakfast where we met Minnie, Tigger, Chip & Dale, Eeyore and even Captain Hook.  We tried to wait in line for a visit with Mickey in his house in Mickey's Toontown, but that wait proved a bit too overwhelming and we had to settle for Goofy instead.  Oh well, she loves Goofy too!  Big Sis brought a friend with her who had never been to Disney before and they both had a blast.  Having a friend along allowed for more flexibility; and this particular friend has always loved Roo and was great with her on this trip as well.  The weather was warm and mostly sunny, so we got a chance to replenish some Vitamin D.  

One of my friends told me about the special pass for people with disabilities.  I told her that Roo wouldn't need one because she is so mobile, but she said "Get it!"   We did and were glad we did.   It cut down the wait time considerably at some rides and saved us from any threat of grumpiness (Roo's or ours).  Roo did have a little trouble waiting in line to see the Aladdin show and then again when it got dark in the theater, but then she totally got into the show and laughed, sang and applauded throughout.  She loved the gigantic Ferris Wheel, the new Ariel ride (we got a sneek preview), Soarin' Over California, the World of Color show and lots more.  She was a real trooper both days.  We only took a short break the first day and then the second day we stayed on the Disney grounds the entire time from about 8 am until 11 pm.  She really didn't fuss much and seemed to be having a great time almost the whole day.   We couldn't ask for more than that.  

Poor Big Sis has been dealing with a bad cold for a couple of weeks and finally ended up on antibiotics today.  She was still a trooper at Disney, probably thanks to having her friend with her. 

Now I'm counting down the days until summer break.  This is the first year I'm really looking forward to it.  We all need some R & R and I don't have too much scheduled.  It will be a good thing.

Wednesday, May 25, 2011

A pick me up

Too much going on around here lately including the need to schedule appointments to get vision checked and work on various medical issues, and not for Roo, but for her Big Sis.  I have a friend whose son has the same medical condition as Big Sis, and he has had a really hard case to crack, much more so than Nadia's.  My friend  and I talk about how we can't imagine making it through a month, let alone a week, without some sort of crisis in our lives.  Truly if it's not one thing, it's another.

One way I de-stress in the evenings is to browse many of the wonderful blogs I've stumbled across in my online travels.  There is so much joy and obvious love out there in families with kids with Down syndrome and other disabilities, and there's a great vicarious pleasure in seeing, and remotely sharing in, their children's triumphs.  There is also risk in reading intimate details shared over the blogosphere.  I've cried many times for children far and wide whom I will never know.  I've prayed for many people whose stories have touched my heart as well.

I've always said the Internet is a source for "evil" in certain content, but also a source for great good.  The more people blog about their loved ones with disabilities, the more barriers will ultimately be brought down.  Their love is palpable, it flows right off the monitor screen.  We all love our kids, but there is something even more special about the drive to adopt children, especially children that society once just threw away.  Reading the adoption blogs, and all the other wonderful family blogs, is a great pick me up. 

Tuesday, May 17, 2011

Introvert vs Extrovert

I consider myself to be a pretty social person.  I'm relatively outgoing and have many friends, but I don't truly consider myself an extrovert.  I usually have to gear myself up mentally before going out for anything grander than a walk and/or coffee date with a friend.   I prefer one on ones to group activities even though I always have a good time either way.  I'm not a big fan of large gatherings unless I know I'll know and feel comfortable with lots of people there. 

Big Sis is definitely an introvert.  When I say that, I am not judging her in a negative way, just saying it like it is, and if she reads this post she will agree with me.  She has a growing group of friends at school and enjoys online chatting or phone calls/texting with many of them daily after school.  She likes to hang with her core group at the mall or in the school building on early dismissal days, but she does not willingly seek out situations that push her boundaries in the social engagement department.  

When I first started reading about Down syndrome, one of the things that stood out to me was the generalization that people with DS are highly social.  A lot of the earlier literature also indicates that they are always happy.  This myth was put to lie in our house early on!   Roo is generally happy but she has ups and downs just like the rest of humanity.  But, she is very social.  She loves to work a room.  After Mass, she will meet and greet as many people as possible and her favorite part of the service is the "sign of Peace."  She loves shaking hands with people in the pews all around her.  She also talks to everyone we meet, whether they want to or not(!).   A sweet thing has been happening each week as we wait for her appointment with her speech therapist.  There is a man who uses a wheelchair who has a session with a therapist just before Roo's time.  He comes out of a room off the waiting area while we are in there.  I think he's a stroke survivor because of his difficulties in articulation and intelligibility.   Roo always talks to him and he tries to talk to her as well.  It is lovely to see the look on his face when he sees her there.  His eyes light up.  I love those moments, when two people make a connection, and a bond is created.  It's magical.  Roo often has that affect on people.  It is one of her many gifts.

One issue that has come up recently is her tendency to want to go home with other moms and dads wherever we are.  She loves the other kids' parents at her Yoga class and also a dad who comes with his daughter to the speech clinic the same time as us.  She will run up and give them a hug and then say she wants to go home with them.  Not sure how I feel about that.  On the one hand it's lovely to see a happy, socially engaged child; on the other, I will have to fear constantly that she might go off with a stranger.  Add that to my ever growing list of stressors!  I've always felt there is a fine line in what we teach our children.  I tell my older one that there are far more good people in the world than bad, but sadly, the "bad" ones get most of the press.  I want both my girls to go out into the world and meet wonderful people, have long term, enriching friendships, and feel safe in their communities.  That is the least any of us should want for our kids. 

When Roo was around 3 years old, a therapist working with us told me that if she had to pick between academic ability and social ability for a child with a disability, she'd pick social over academics.  I want a good mix of both.  I want her to have the skills to live and work as independently as she can, but also to feel that she is a valued member of her community and to feel comfortable interacting with a broad range of people.  Who wouldn't want that?