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!

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.

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.

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.

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.

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. 

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?

Two for two

I feel like we're making progress.  Last night I was the team leader for a Little Girls Night in the Library Party several moms and I do each year as a fundraiser for Roo's school.  I started doing the party years ago when Big Sis was in 3rd grade.  The school librarian used to do a similar party but gave up because she didn't have moms helping and tried to rely on junior high girls who spent their time on the phone calling friends.  I asked her to participate again and if she did, I'd get a team of moms to help out.  So I did the party 5 years with my first team, took last year off, and then was asked to start it up again this year.  I knew it would be a fun thing for Marisa to do, and a great way to experience more inclusion with her classmates, so I said yes.  I had a new team of moms this year and they were all great to work with.  Big Sis came to help out and I got several other older girls to come too.  We had 29 1st through 3rd graders in the school from 6 to 9 pm.  Just a few tears from tired girls now and then, nothing major.  Marisa had a grand time, participated in all the activities, hung out with kids from all three grades, and didn't get overtired or engage in challenging behavior the entire time.  She did practice a little bit of tough love on a couple girls here and there, but they were good about making her stop and then letting her continue on playing with them.   They have learned how to be with her, and she is learning how to be with them.  That's what it's all about.

Today she went to a birthday party for one of the girls in her class.  All the girls from her class were at the party last night and then at the birthday party today.  This was the first time I felt comfortable leaving her at someone else's house and it worked out just fine.  Soon after we got there she did make a beeline upstairs to her friend's room, but the girls went to get her, brought her back down, and she became engaged in the party activities.  There are some really wonderful, sweet girls in her class, and the moms are terrific too.  This is the biggest reason I'm glad she's back in school now.  I've been thinking that she would be further along academically if she were home with me, and I know for a fact that would be the case; but seeing her blending in with her friends, and seeing them accommodate her naturally, welcoming her warmly when she walks in and hugging her sweetly when she leaves, makes this placement worthwhile.  The trick as we go along will always be to find that balance between the academics and the social.  For now, building friendships and all types of social relationships is the utmost goal.  

Friendship

This has been a very big year for our family.  The transition from homeschooling back into a school building, with all the pressure to "behave" and learn the ropes while making academic and social progress for little one; and moving from a small, protective environment of 18 8th graders (capacity is 28, they just had a small class the last year), into the much bigger pond of a smallish but way bigger high school in the midst of the city, for big one, has had its ups and downs.  Thankfully overall I'd say there have been many more ups than downs, and isn't that what is important?  

A child's experience of their school years has to do more with the relationships they form with the kids in their class, than the interactions they have daily with teachers, staff and other parents.   Academics are important, but its the social stuff they will likely remember more years later, and that can set the tone for whether they have happy memories or not so great ones of their school age years.  When I was in elementary school, my best friend was one year behind me all the way until 5th grade.  She was very bright and was moved up into my class that year.  Well, I thought we'd be the same and continue on our merry way being BFFs.  That didn't happen.  A couple of girls from my class decided to take her under their wing, and I was left out in the cold.  Horrors!  She and I did eventually become close again, but that was right before my family moved away at the end of 7th grade.  Losing her friendship in 5th grade is one of my clearest memories from that era. 

Big Sis had several close friends in her primary years, but she really needed to dive from the little pond into the vastly larger one of high school.  She often said she was not one of the "popular" girls in her grade school, but I would always counter that with "Do you have good friends?  Do the kids in your class like you?  Then you are 'popular' in that sense, and besides 'popular' hopefully won't mean anything at all to you later on in life."  Of course Motherly advice like that usually goes in one ear and out the other.  Oh well. 

The great news is that now she has a very large group of friends, and they all seem like "good" kids.  I'm starting to sense, based on what some of their parents have told me, and just getting to know the girls a bit, that this particular group is made up of girls who all seemed to think they weren't part of the so-called "popular" crowd at their grade schools.  Imagine that!  They all "survived" grade school and then found each other and formed a pack in high school.  What a wonderful thing for my lovely daughter.  Now comes the hard part.  She is so socially engaged now that she has to work extra hard to stay on top of the rigorous academic program.  She now has to learn how to balance keeping an active social life going while making sure she is doing her best on her assignments.  This will be a very good lesson for her to learn.

With Roo, we are trying to balance finding time for all important playdates after school with all the therapy visits and the need to have some completely unstructured days some days.   I've been very slow in getting the playdates going this year, just because we've had so much else going on, but I know how important they are for building friendships and learning/increasing social skills.  The great news for her is that there are some really sweet girls (and several sweet boys) in her class who are becoming her good friends.  And, the very best way to learn how to modify your own behavior is not to have Mom tell you what to do, or what not to do, but having a peer tell you.  The best way for her to learn not to grab other kids is for those kids to tell her that to her face.  Over time that strategy is working.  

All I ask in this life for my kids in their social pursuits is that they have kind, loyal, good-hearted friends.  I have more wonderful friends now than I've ever had in my life and I want that for them.  Because at the end of the day, it's not what you did, but who you are; and being socially engaged with a variety of people throughout life is one of life's greatest gifts.

To thine ownself be true

I've had "feminine" issues for years.  I won't go into the details here, but I've tried many different treatments (OCPs, Estrogen patch, Progesterone cream, etc., etc) over the years with little to no success.  About 10 years ago things got even worse.  I used to have migraines once or twice a month, but then they started coming much more frequently, up to 10-12 days a month!  Intolerable.  Yesterday I went to see a well-known and respected Naturopath.  She was very knowledgeable and seemed to get at the cause of my current issues immediately, diagnosing me with a condition I'd never heard of but there's plenty of literature on it (including Mayo Clinic so totally mainstream) on the Internet.  She gave me a whole list of supplements, vitamin & herbal blends, to try and told me to come back in 2 months to report on how they were working.  When I added up the cost of the supplements, the total was close to $200.  And that would be per month!  Yikes! 

At first I said no way, I cannot afford to spend that much extra per month, not now and maybe not ever.  But then I found most of the items a tad bit cheaper online and decided to go for it.  If the combination she put together for me works and I get a higher quality of life back, it's worth it; and I'm really hoping to be able to wean back off the supplements within a few months.  The alternative is to have the offending parts taken out, but with my long history of hormonally related migraine, that might not be the best option.  So, I have lots of new stuff on order now and am anxious to try the suggested plan.  The good news in all of this is that my condition will eventually go away anyway and it is not life-threatening.  I just have to find the best way to cope while I wait for the end of my reproductive years. 

The reason I decided to write a post about this topic is because it does relate to how I care for my children and what happens when you don't attend to your own concerns in a timely or appropriate fashion.  As any good mother does, I always put my kids first.  I'm not the "best" mother by any stretch of the imagination, but by golly, their needs are met and met well.  When it comes to taking the best care of my own health and mental well-being, that's another story.  And, especially when taking care of myself costs $$$, it's a huge struggle for me to take the plunge and spend the money.  My husband told me to go ahead and give it a try to see whether or not things improve.  I think he is hoping my issues get better because then I'll have fewer days when I'm crabby!  Not a bad thing for a spouse to hope for. 

The other issue, though, with spending money on myself is the constant and unrelenting nagging thought in the back of my mind - will we have enough money put aside for Miss Roo when we are no longer around to care for her.  I do not go to that murky place way in the future (God willing!), where Roo is left without her loving parents at her side, very often; but sometimes I just have to so I can push myself to continue to think about and work out a plan for her care. 

So, the big issue for the primary caregiver (Me!), is finding that balance : taking care of myself well enough so I have the strength, drive and energy to take care of my wonderful children.  If I get my health in order, I really will have so much more to offer; and that will be in everyone's best interests. 

Speech Arts Competition

At Roo's school (Big Sis's school for 9 years too), one of the events that all the students participate in is the annual Speech Arts Competition.  Kids and/or their parents pick a short piece of poetry, prose, an excerpt from a book, Bible verse, etc.; anything that is appropriate for the child's level and fits into the categories of Religious, Humorous, or Serious. The children present their speech selection, memorized not read, in their classrooms first, then the classroom winners go on to compete against children from other grades in a school wide competition.  When Big Sis was there, until just last year, the kids all competed against each other, so a cute little Kindy would be up against a polished, competitive 8th grader.  Oftentimes the Kindy would win because they were just so darn cute and they memorized their piece and presented it flawlessly.  Last year the structure changed so that K-2nd competed, then 3-5, and finally 6-8.  That made more sense. 

Big Sis won in her category in the classroom almost every year.  One year she didn't win was first grade.  Roo was in the NICU during that time of the year and I had no heart/drive/ability to help Sis prep.  In second grade, Big Sis even wrote her own piece and the judges let her present it because they were so impressed with what she had done.  She won in the classroom but didn't in the school wide competition, even though she got an "A for effort" nod from the judges.  Her poem was called "Noah Built an Ark," and it was a funny takeoff on the Bible story.  She did a great job with it and I have a copy to give to her when she has kids of her own.  After winning the in the classroom several years, it dawned on her that winning meant she would have to go on to face standing up on the big stage and doing her thing in front of the whole school, school staff, most of the parents, and other interested parties.  Over time she began to dread that possibility more than probably death itself, and by the end of her school career, 7th & 8th grades, it was obvious that she wasn't even trying in the classroom competition anymore.  I enjoy public speaking and have no problem (well almost) with it now, but it took many, many years for me to develop that skill.  I was not a natural at a young age.

Now it's Roo's turn to participate in the event.  I fretted for a while over what to choose for her.  Her teacher had said not to make it too short.  What could she memorize?  What would she like to do?  Too many questions and too much procrastinating on my part (my usual M.O.).  So, I finally started googling Kindergarten speech selections for her.  Yes she is in first grade, but I didn't want to choose something that wouldn't be appropriate for her.  I want her to have fun with this and want to do it again next year.  

I found a sweet little religious piece by a 19th century British poet named Christina Rosetti.  Roo likes it and her aid has already come up with some cute hand motions to accompany her recitation.  She has until April 27th to prepare for the classroom competition.  I'll be proud of her no matter how she does!

My Gift
 by Christina Rosetti

What will I give Him,
Poor as I am?
If I were a shepherd,
I would give a lamb.
If I were a wise man,
I would do my part.
But what will I give Him?
I will give my heart.

It's not all bad

I started this blog mostly to force myself to keep a journal of sorts, a place to write about things going on in our lives and my take on the daily ups and downs of raising a child with a disability.   I have tons of thoughts floating around in my head all the time, and it has always been difficult for me to put them down on paper; too many other things to do, procrastination, fear of imperfect writing, whatever.  Lately I feel like most of what I've needed to write about has been dealing with Roo's behavior issues.  I don't want that to be the measure of her life at all.   And, at least I know this for myself, if I dwell too much on something, it tends to become bigger in my mind than it is in reality.  I let feelings of being overwhelmed and hopeless (only at times, thank heavens), and the need to work with her daily on keeping her "challenges" at bay, take over.  Constantly allowing in negative thoughts and fear or despair, have had an impact on my health.  I am not the happy, positive person I used to be.  I see glimpses at times in myself, but I also need to do a lot of work to try to regain who I was before.   I admit to feeling depressed at times, some situational and some just in dealing with the effects of being in full-blown perimenopause and unable to medicate hormonally (tried many types, no luck - too many migraines).  I do exercise and eat more good stuff than bad, but have become so bogged down in negative thoughts that getting better will be an uphill battle. 

That said, let me also stress that it's not all bad.  Roo is a very sweet, lovable, charming, witty, bright, warm, little girl.  She walks through life wanting to meet and greet everyone she sees, and is able to win them over with little effort.  She cruises the hallways at her school and speaks to every teacher she encounters, asking them about their day and putting smiles on their faces.  When I pull up to drop her off in the morning, she always spots kids she especially likes and calls out to them from the car.  She also loves every dog on the planet and wants to meet them everywhere she goes.  I'm working on teaching her some basic self restraint in that habit.  She has come such a far way from the infant hooked up to multiple machines, fighting for her life in the NICU.  She has a place in the world and that will grow and expand over the years.  I know that for a fact. 

So, the next step on my personal journey is to get my life in order.  To get healthier and to sweep the negative thoughts and fears from my head.   Walking with friends, sticking my head out in the sun as much as possible (a difficult goal where I live!), and just taking time to focus on the positive while keeping the negative at bay will help me when I need all my resources in those moments when I must focus on moving my precious daughter forward. 

It's always something

In my constant quest to figure out what exactly is going on in my beautiful little girl's brain, I've considered ADHD, SPD, ODD, and the tried and not true friendly input from so-called "experts" : "It's just Down syndrome."  Well if the way she presents (not all the time, thank heavens!) is "just Down syndrome," then why oh why don't all kids with the same diagnosis act that way?   I know quite a few kids with Down syndrome that might have a few little "quirks" here and there, but they don't necessarily exhibit signs of sensory processing, attention deficit, or potential anxiety disorders. 

I try to consider all the options when starting down a path to figuring her out.  One disorder I hadn't considered before is OCD.  A dear friend called me just as I was getting ready to go have coffee with another dear friend this morning. We were chatting about this and that and I mentioned Marisa's tendency to repeat phrases that seem to have caused her some anxiety at a previous time.  Oftentimes if she gets reprimanded for something or is asked to stop doing something, she retreats into a dialogue that goes like this : "Stop coppa (copying) me!  I no like it no more.  She copied me two times!"  Or : "Stop coppa my feet, my hands, my teeth," etc., etc. ad infinitum.  Another thing she has been saying a lot lately is "Stop following me!"  I don't  know if another child said that to her at recess at school, or if' it's something she said to someone.  Her verbal skills are great, it's the context or intent that is sometimes hard to decipher.  My friend is a nurse and she has a very good working knowledge of various disorders.  When I told her what Marisa has been doing, and that it's not always just straightforward echolalia, but seems like reflecting on anxiety producing events, she said "That sounds like OCD."   Guess what?  The proverbial light bulb went off in my head!  She may have just answered a question I've been stressing over for a very long time.  Now I have more questions to ask the "expert" I am looking for who can open a window into Miss Roo's brain, and hopefully provide the appropriate treatment to help her cope.

I always tell people that I do not willingly go in search of additional diagnoses with either of my children, but am so very thankful when certain questions finally get answered.   We'll just have to see where this goes....

My own worst enemy

I had been fretting about this morning since getting a call from the Vice Principal/Case Manager for kids with "special needs" at Roo's school just before Spring Break last week.  She said the school's team : Principal, VP, classroom teacher and her aid, wanted to meet with both parents to discuss Roo's progress and make plans for the next steps.  As I've mentioned in other posts, Roo is not on an IEP.  She has an ISP for services she receives from the school district - OT & Speech, and an ILP (Individ. Learning Plan) created by her school.  Her team wanted a chance to go over their plan with us and let us know where we stand right now.  They want to start meeting every 4 to 6 weeks. 

Given Miss Roo's uptick in challenging behavior over the past several months, to a level even beyond what is "normal" for her most of the time, I had pretty much convinced myself that this meeting would not be pleasant.  I've heard over and over and over again from many different people working with her how difficult she can be.  She's had so many assessments that did not truly assess where she is and what she can do.  I take almost all of them with a grain of salt, being careful not to overestimate where she is, while making it clear to those assessing her that she should not be underestimated either.   I was feeling stressed out most of the day yesterday, playing a script in my head of what I expected to hear from them and the looks of concern on their faces.  I've known 3 of the 4 participants for over 9 years because they have all been there since Nadia started Kindergarten almost 10 years ago.   They are good people and it is clear they love the kids they work with; but, even with the best intentions, I fear the worst when going to a meeting to discuss all areas of progress.

Well, let me repeat the title of this post : I truly am my own worst enemy!  They are happy with the academic and social progress she has been making and recognize the gains she has made since last fall.  They are continually looking at ways to keep her focused and on task and have been willing to be flexible in their game plan. One issue that is not surprising is that now she much prefers to work in the little room upstairs with her aid and making the transitions in and out of the classroom are difficult for her.  She loves her fellow classmates but the structure/routine/calm of the resource room environment is what she now prefers.  So finding the best way to get her back with the other kids as much as possible, which is their ultimate goal for her (hooray!), is a challenge that will hopefully be overcome in time. 

I told the team that I was expecting to hear that the behavioral issues were getting out of control at school, but they all shook their heads "no."   I told them things have been worse at home lately, but then we all agreed maybe that's because she has been trying so hard to keep it together during the school day that she needs to release at home.  If that is the case, as hard as it is on me, I'LL TAKE IT! 

So for now my next game plan is to start whittling away at my fears and other negative thoughts and focus on all the positive that is going on in our lives.  I need to divorce myself from my enemy.

Bonding with Big Sis

Big Sis Nadia is in 9th grade this year at a wonderful, all girl high school. We are making sacrifices to send her there because we are in awe of the young women we know who go there and all the women we know who either went there as students or have been affiliated with the school in some way.  So far she has had a great year, even if her grades haven't been quite as stellar as they could be given her "ability."  She has been challenged in all the best ways academically, and has formed a big and diverse group of BFFs.   She graduated last year from our church school, where she had gone from K through 8.  Her experience there was mostly good, but it's not always the best thing to be in a graduating class of only 18.  She was totally ready to go into a much bigger pond.

One of the things I really like about the school is their commitment to service in the community.  The girls can decide whether or not they want to do a formal program and volunteer for at least 160 hours over 4 years, and if they do this, they get recognized at graduation and a nice addition to their college applications.  I've always been a big fan of volunteering, and have done quite a lot at Roo's school (Nadia's former school), my church and various agencies in the metro area.   I think it's really important on all levels to get out and help others, and it has been part of my own personal "therapy," especially since Roo was born.  So, Nadia and I have been working on her hours together this year.   She has moaned and groaned about a couple of projects I signed us up for, but she has really enjoyed other things we've done.   We have worked at a cat adoption agency, a fall festival for adults with disabilities, our local Buddy Walk and support group Christmas party, cleared a path for volunteers walking dogs at the Humane Society, and helped out at our local Food Bank.

Today we were on an urban nature trail working with a team of volunteers and staff from our local Parks & Rec.  Our job was to put in trees and shrubs along the trail to replace ivy that had been pulled a while ago.  There were maybe 15-16 of us and together we planted a total of 400 plants!  Nadia wasn't thrilled about going on this project, especially because she went skiing with her Dad yesterday and was already sore, but when we finished she had a smile on her face and she was impressed with the amount of work we all did.   I'm sure we'll both wake up a bit worse for wear tomorrow morning, but I do cherish the time I am getting to spend one on one volunteering with my lovely teen.

Weaving Roo into our story - after Nadia and I worked at the festival for adults with disabilities last fall, I told her that her sister has given her a gift that most of her friends do not and may never possess.  She gave her the gift of being able to be around and appreciate adults with challenges, to feel completely comfortable around them and see the value in each and every one.  Now she tells me she'd like to volunteer at a local hospital center for medically fragile children.  Her sister has brought a world to Nadia she would potentially never have known; and made her a much better person for it!

On differing perspectives

I'm seen a lot of blogs talking about the poem Welcome to Holland by Emily Perl Kingsley, including a nice interview with the author on the blog Love that Max.  I don't know when I first read the poem but it was sometime during the 2 months Miss Roo was in the NICU.  At that time in my life, in the earliest days and the tip of the iceberg in coming to terms with her diagnosis, I really appreciated the words Kingsley had written, inspired by her son who has Down syndrome.  I still think the piece has the ability to give some parents a great deal of comfort and help them in developing a positive perspective on an unexpected turn of events in their lives; but only in certain circumstances. 

Marisa faced what felt some days like insurmountable medical challenges for the first year of her life.  I didn't have much time to appreciate "Holland" because I was in the car driving back and forth to the hospital most days and spending way too much time pouring over medical bills and doing Internet research to try to come to grips with what we were facing given how she presented at birth.  As the acute medical issues started to wane and we had more time at home, the drive to work on developing skills, while trying desperately to meet the needs of my other child and all the other aspects of keeping home and hearth going, meant that I had little time left to stop and smell the tulips (do they even have a smell?).  I'm not a big fan of tulips anyway. 

Then as even more time passed, the behavioral challenges started surfacing, making life just that much more difficult to manage than it had been with her older sister.  That's not to say big Sis was a perfect angel, nowhere near, but I could take her pretty much everywhere I wanted or needed to go without worrying whether she would flee the scene or create a scene, or both.  Big Sis and I used to go out everyday and the only issue I faced regularly was dealing with a case of blossoming conspicuous consumption and the overwhelming drive to own every Beanie Baby ever mass-produced.  With little Sis, the time it took to steel myself mentally and prepare my psyche emotionally, was usually more than the time it would take to run the errand.  Let me stop here and say this loud and clear : I was not and have never been ashamed of my daughter or her disability, I just discovered early on that if I needed to go out to a store to get something, it was better to do it when someone else was watching my child at home. Things have been getting much better over time, but I still don't take her some places by myself.  The park is fine.  Starbuck's is fine.  The mall or grocery store are not.  Maybe we'll get there one day.

Back to Holland.  I still think the poem is lovely and see it as helpful for certain families; and isn't it nice to find uplifting pieces written by parents of kids with disabilities, especially when you are starting out on your own journey?   That said, though, I totally get why the piece does not resonate with many families and why some might even find it offensive, though that was obviously not the author's intent.  I did experience caring for a medically fragile child when Roo was very young, but that has not been the case now for several years.  She also does not have Autism, and although I know lots of people who fall on the Spectrum now, I can't speak to what it is like day in day out as a caregiver for someone with that diagnosis, especially on the more challenging side.  So, I guess I can truly see both sides of the like/loathe divide, and would place us somewhere in the middle. 

What is often the bottom line for me, though, is how would someone looking in on "Disability World" from the outside, or someone who will join our vast and diverse community one day, feel after reading a piece like Welcome to Holland?  If it offers one iota of a change in someone's preconceived notions of people with disabilities and the families who love them, then it's worth all the extra discussion.

The best things in life are free

I feel like I've only been writing downer posts, putting into words my feelings on Roo's behavioral challenges and other pressing concerns.  Well, we just had a great weekend and it's worth writing about the good stuff too, of course.  There's a short, about 1 mile, walking trail not too far from our house.  Yesterday the whole family went there to take doggy Taylor for a walk.  Marisa loves to go there and she has been known to run/jog the whole mile before.  A big plus for her is meeting other dogs with their people along the trail.  Yes it is a generalization, but it certainly is true with Miss Roo that she is a highly social animal.  Everywhere we go she likes to say hello to people and is usually very good at brightening their day in some way.  She also likes to try to meet every canine we see out and about.  I have taught her to ask the owner of the dog if it's okay for her to meet their pooch.  She asks me "Can I ask?," and I tell her yes or no depending on the situation.  My answer is almost always yes you can ask, unless I get the sense that the dog is not a kid friendly version.   Most people are more than willing to let her go up to their dog for a little face time and she is learning that if they say no, it means it's time to walk on and not pursue the request further.   I feel this is a great way for her to continue to improve her social skills and it's always a good thing in my opinion (okay, dog lover here!) to interact with dogs. 

Today we drove about an hour away to go for a family hike, pooch included again, on a great trail in the woods near Mt. Hood outside of Portland.  The sky was cloudy, which is par of the course this time of year around here, but it didn't start raining until we were back in the car headed home.  Marisa is a great hiker.  She does get tired after a while but she loves being out in nature and really does very well for a kid her age.  We were walking along the trail heading down to banks of a large, rushing stream, and we had to step over rocks and large roots plus move on and off the trail because all the rain we've had left big puddles and lots of mud on the main trail.  Daddy, Nadia and Taylor were in the lead and I followed behind Roo, mostly to make sure she was with our group at all times (she's getting way better at that).  I watched how she made her way over and around all the obstacles on the ground and was very impressed with her motor planning.  I continue to be amazed at all the new vocabulary I've learned in the past 8 years.  The idea that she got tons of great proprioceptive input as she put her feet down over the roots on the ground, would never have crossed my mind before.  So, once again, I am happy to say that living with my wonderful child and learning about her each day is the proverbial win win for me, even if I get bogged down in the negative at times.  She has taught me so much in her short life so far, and even in my darkest moments, I wouldn't trade her for anything.

The toll it takes

Yesterday Roo and I were at the hospital for her blood draw.  When she was born with TMD (Transient Myeloproliferative Disorder), she had daily blood draws to check her white blood cell counts and other factors. At one point during our 2 month stay in the NICU, the Hematologist (we had 3 who rotated days) in the department that day told me I would need to bring Roo in up to 3 times a week for additional blood draws after she was released.  Three times a week!  Then over time, and as she continued to make progress and her overall health got better, but before we left the NICU, the doctors told me she should come every other month for a blood draw.  After feeling relieved at the change in that schedule, I got worried.  How could we possibly have gone so quickly from needing to be tested multiple times a week to every other month?  Were they sure they had the right patient?  Even every other month was no breeze, though, especially given an infant with a G-tube and multiple, timed meds, plus a 1st grader to consider as well.  But we did go back, every other month, for at least a year (my mind is foggier now), and thankfully, every time her counts were normal.  Then after a year, we were able to go to every 3 months, then eventually every 6 months and finally, annually.   At age six, she was technically released from being a patient of the Hematology/Oncology Clinic because her counts had been consistently in the normal range for years, even with many pouts of petechiae (tiny dots on her face and chest from broken blood vessels, usually in her case caused by crying or coughing), and a post fever rash that her Pediatrician thought might indicate that something was going haywire in her blood.

It's always a great thing to be released from a specialty clinic, even if the thought of that is daunting.  When she was 2, she was released from Cardiology.  She was not born with a heart defect but she had complications from the TMD and a small hole.  After doing follow up testing at age two and seeing that the small hole had formed a membrane and there were no other cardiac concerns, she was released.  I shook the Cardiologist's hand, thanked him for his care and support for her and wished him a nice life.  I did the same with the Hematologist when Roo turned 6, but here we are again going annually.

Add to the plot is the need for thyroid screening twice a year.  She takes Synthroid daily and has since she was a newborn.  I have an arrangement with her Endocrinologist to tack on a CBC with diff every time he writes an order for her thyroid labs, just to be on the safe side.   Last year her WBC (white blood cell count) and MCV (mean corpuscular volume or volume of red blood cells) were off.  Her WBC was lower than normal and her MCV was higher than normal.  Because of this I contacted Hem/Onc and they told me to bring her in.  She was fine otherwise but those lab results earned us another visit.  After her check-up and a discussion of the lab results, it was recommended that I bring her back again a year later.  That brings us to this week.  Thankfully this time around her WBC is in the normal range and her MCV, although slightly elevated, is not concerning because it's coming down and is close to the normal range.  It was again recommended that I bring her back in a year from now.  So she went from a "graduate" of the clinic to back on the patient rolls again, but I'm not complaining.  I'll take her to a Hem/Onc clinic every year I'm on this earth if that helps to keep her healthy.

But, as the title indicates, there is a toll on me every time I walk through the door of the clinic.  They are truly wonderful people there and I don't mind the inevitable long wait time given the severity of what most of their other patients are facing.  What I mind is my own internal workings, my inner demons that give me a bout of PTSD for want of a better description every time we cross that threshold.  The day before our appointment each and every time I have a case of the "what ifs,"  what if she has developed full blown leukemia, what will that do to her, what further complications will that cause, and will she survive?  It's not that I don't have faith and it's not that I am the type of person that always fears the worst.  It's just that the memories made during her first few months out of my womb, and the overwhelming stress on my psyche, are seared into my brain.

I am so very thankful for how far she has come, and I can't imagine what families go through day in day out for years with their medically fragile children.  But, all my fears, sorrow and struggles to cope come back to me in a flash when we walk into that clinic.

Walking a fine line

Marisa went to an inclusive Montessori preschool where she was loved and supported by great staff, great parents, and a great group of kids.  She certainly had issues there, especially being overly physical with some of the kids, but overall it was a great two years, and I was very sad to move her on from that loving environment out into the big world.  We had two choices to consider for Kindergarten, our church school, which Nadia went to from K-8, or our public, neighborhood school.  If I had placed her at our church school I would have had one blissful year with both kids at the same location, but alas, that was not to be.  Nadia graduated from 8th grade last year and moved on out into the bigger world herself.

I chose the public school for Kindergarten for several reasons.  It was a half-day program and our church school was full-day.  The K teacher at our church school is a lovely woman but I could sense that she wasn't sure if she could handle having Roo in her class (big red flag!); and our school district promised me what I call the Holy Grail of Special Education : placement in the regular classroom in our neighborhood school with supports and services brought into the classroom to Roo.  I had fought long and hard for this, attended multiple transition to Kindergarten and IEP workshops,and did everything I could think of just shy of finding a local disabilities rights attorney to make sure my child would be included with her typical peers.  Our school district maintains several "program" classes, including a self-contained class in a grade school not far from our home, but not in our neighborhood.  I know many of the families who have had kids in that class and they are lovely families with great kids, but I was not going to agree to have that as Marisa's placement.  Even if I weren't a supporter of inclusion, the idea of placing a kid with a speech delay and challenging behaviors into a classroom of K through 5th graders with the same issues, just did not appeal to me.  I knew it would not be right for her and that she would not make adequate progress in that environment.  So, I pushed ahead with letting the district know exactly what I expected in terms of her placement and that I knew our rights and the law.  They did inform me that behavior would be the factor that would determine whether or not she could remain in the regular classroom, and I said I would cross that bridge if and when we got to it.

We made it 2 months in the regular classroom at our neighborhood school.  I won't bash the school or the staff there.  They did try to support her, and I know that at least some of them even grew to love her in the short time she was there.  The Principal was truly awesome and I stayed in contact with her for a while after we left, just to let her know the progress Marisa was making at home with me.  The problem was that my district did not provide her with the additional support she needed to be successful in that environment.  Just prior to the 4th IEP meeting in 2 months, all dealing with behavioral issues, I submitted a letter, cc'd to the director of special ed for the district and the school Principal, formally requesting a one on one aid to help Marisa meet the goals on her behavioral support plan.  In the letter I quoted from case law that specifically states that behavior alone cannot be used as an excuse to pull a child out of an inclusive setting.   My request was denied, I think on a technicality, and when that happened I could see the writing on the wall and could sense the uphill battle facing me if I tried to go further.  I knew the district wanted to remove Marisa and place her in the self-contained classroom.  So, rather than let that happen, I homeschooled her for the remainder of the year, and I don't regret that for a second.

Now I am thinking that sensory dysfunction played a role in her inability to thrive in the regular classroom last year.  That and not having enough one on one time with someone qualified to work successfully with her.  She just could not self-regulate enough to be able to keep herself together in that setting, and the school was unable to provide her with the support she needed.   We didn't (still don't) have the money to go into a drawn out legal battle with our district, even though I believe the law would have been on our side.

I know Inclusion can and does work for many children, and it is the right thing to do.  But for my sweet girl, bogged down with too many factors that make sitting still and being quiet in a seat in a large and exciting classroom, full day inclusion just isn't the best option. 

Behavior is communication

I am at the beginning of a quest to determine to what extent Roo's behavioral challenges have to do with sensory processing.  She has had issues for quite a while now with "non-compliance," being too physical with other children, running away from caregivers, etc.  The difficult thing when a child has an underlying, and highly complicating, condition like Down syndrome (or Autism), is figuring out exactly when behaviors are sensory related and which are "learned" behaviors that developed in response to something affecting them, externally or internally.  What I know now (wish I had known years ago!!!), is that parental or other caregiver response to a challenging behavior can reinforce it and turn it into a learned behavior.  Once learned, whether or not it was initially sensory related, the behavior becomes more difficult to modify.   Most behaviors manifest when a child is trying to obtain or to avoid something.   Behavior is Communication is a mantra I didn't coin but do try to take to heart.  The problem is that I am often confused by what exactly my darling now 8 year old is trying to communicate with her behavior.

When I went to pick Roo up on Friday to head off to the Speech Clinic, her aid told me she was not willing to work much at all with her that day.  She said she was trying to introduce new concepts to her and that she became more non-compliant than usual.  Not her words, but the gist of it.  I told her that used to happen when I was homeschooling her last year.  We'd be going along okay and then I'd try to move forward and she would dig in her heels and flat out refuse to do the work.  This would go on for a day or two and then something would eventually click with her and we'd start to move forward.   I recognize that she was trying to communicate with her behavior that the work was hard for her and she didn't want to try it.  When that happens, I know (and now her aid knows) that it will take extra coaxing and lots of patience to get her going again.   The great news about her aid is how much she has invested herself in helping Roo.  I can tell that she loves her and wants the very best for her.  Thank you God!

It is still often challenging to take Roo out by myself to a store or someplace with tons of distractions and stimuli.  A few years ago I was talking with a mom of a little girl with Down syndrome a year younger than Roo.  I mentioned in passing that we had finally started going to Starbuck's together and that it was going okay.  She couldn't believe that it was so hard to go out with Roo by myself because she and her daughter did that often.  Well, as with all our children, everyone is different, and what works well for some doesn't always for others. Now I'm starting to wonder if the root cause of Roo's less than desirable behavior when we would go to the mall or some other highly stimulating environment is that it was just too much for her.  Too much noise, too much visual stimulation, just too much of everything bombarding her eyes, ears, etc.  Put her in a big, open space like a mall and all she wants to do is dart away and go sprinting down through the middle.  The silver lining in that is that there is hardly any fat on that little body!   But, it makes for moments of sheer panic if I have to sprint off after her.  My knees are not at all what they used to be! 

I need to write a post on Inclusion because I have tons of thoughts on it, but will save that for another day.  I truly believe educating kids with disabilities with their typical peers to the maximum extent possible is the best practice, and the right thing to do; but placement isn't one size fits all, and for my little darling, time spent out of the classroom, one on one with her loving aid, working on concepts at her pace and cognitive level is the best thing for her.  Her team at school values her and does their best to give her time each day with her classmates, but I know the classroom environment is just too darn stimulating for her, in all ways imaginable, for her to be able to self-regulate enough to stay in the classroom the amount of time the other kids do.  I am at the beginning of this journey, though, and am hoping that with lots of support, information, and assistance from people who know about sensory dysfunction, that we can all help Roo learn to help herself deal with what is overwhelming to her in her environment.

I attended Marisa's ISP planning meeting last Monday. It's called an ISP or Individual Services Plan instead of IEP because she is in a private school and does not receive the same amount/type of services she would in the public system. At the meeting, after hearing the difficulty her SLP and OT had in doing assessments on her, and after discussing her many behavioral challenges and sensory needs, her first grade teacher (love her!) closed the meeting by sharing that she believes Marisa is the best thing that has happened to her class this year.  She said the kids love her and that they have grown in compassion and acceptance of differences so much thanks to getting to know her.  After I wiped the tears of gratitude from my eyes, I left knowing that even the darkest days are no match to what I know is right for my beloved child. 

Eight years ago today.....

I guess I'll have to consider myself an occasional blogger.  Had such high hopes of posting tidbits every day or at least every other, but that is just not happening.   Oh well.  What has been happening lately is that my little Roo Bug has been growing up before her family's eyes.  Eight years ago today, at 10:54 pm, in a labor & delivery room at Meridian Park Hospital in suburban Portland, my life changed forever.   It's funny that such a little bitty newborn baby girl (5 lbs/7 oz), who slipped into the world with a short labor and relatively easy delivery (okay so there was still plenty of pain but it was worth it), could have turned my world upside down, made me question if God hated me (low moments, sad to say), given me more stress than I thought could be possible in life, and yet prove to be one of the brightest stars in my own personal universe with the ability to make me rise above complacency and drive me, and others who have met her to a much broader worldview, more compassion, and greater zeal for those with challenges, the vulnerable, often lonely, and all too often under-served people with disabilities all around us.

My darling Marisa opened up a world to me that I had barely glimpsed before.  I don't think I was ever, in any way, callous towards people with disabilities.  I just did not take note of them.  They and their families lived on the fringes of my little corner of the world.  I knew a few families who had kids with Down syndrome, but only in passing.  When Marisa was born, my thought of what it meant to have Down syndrome was that she would have some characteristic facial features and would need help with learning.  I didn't have the slightest clue regarding the broad range of medical complications and also the broad range of abilities seen in what I now call the "spectrum" of Down syndrome.  In her first two months out of the safety of my womb, I learned more medical vocabulary and met more medical specialists, social workers, case managers, lactation consultants, the list goes on and on, than I would probably have met in my life otherwise.   The vast majority of these new people in our lives were totally supportive and respectful towards my new child.  I did receive looks and/or comments implying pity now and then, but that wasn't the norm.   Most of the professionals who worked with Marisa her first few years could not have done a better job of showing with their words and deeds that she deserved the best care regardless of her underlying diagnosis.  I am so thankful for that!  

So, fast forward to today.  Today Marisa and I brought 3 dozen little pink frosted doughnuts (special ordered from Starbucks) to share with her classmates and teachers.  A chorus of Happy Birthdays rang out as she walked into the school building.   Her family took her to her favorite restaurant and she ate a Happy Cake Pancake for her birthday dinner, followed up by a slice of ice cream cake at home.   Needless to say it's back to a more balanced diet tomorrow!   I'm planning an all class party for her as soon as I figure out when and where.  Basically life is good, especially if you're 8 years old.  

I can't say it has been easy, and I also can't say there haven't been times when I have failed miserably as a parent and at times have not deserved her; but I thank God every day for the little, wonderful person born 8 years ago today.

Who defines quality of life?

I read a lot of blogs written by moms and dads of kids with Down syndrome.  It's a form of therapy for me to see the lovely faces of the (usually) smiling kiddos, surrounded by their loved ones, going about their very "normal" lives.  If I can ever get my act together, I'll post pix to this blog and make it more public so others can see my lovely kiddo too.  She really is a charmer.

I posted recently about her behavioral challenges.  That is a big issue in our lives, but only one small portion of who she is and what her life is about.  She is also friendly, a dog lover, obsessed with Veggie Tales, enamored of anything pink, up for adventure at all times, a great hiking companion, an ever improving talker and reader; and someone who will brighten your day at the drop of a hat.  I could go on, but then I'd be boasting.  I know other moms and dads out there are pleased with their own lists of what their kids can do too.  And, when I say that, I do not mean only the so-called abilities of their children.  All children offer something to the world, no matter how complicated their lives seem to be to outsiders looking in.  

We've all been reading more and more on the topic of the high rate of abortions in prenatally diagnosed babies with Down syndrome.  Up to 90 percent is the latest statistic I've seen.  What this suggests is that there are far too many expectant parents out there who do not have a clue what Down syndrome is and how it can affect the child the mother is carrying.  They have no knowledge of the broad range of "abilities" in this community, and they will miss out on the many gifts their child will bring to them, no matter what.  This also suggests an EPIC FAIL (otherwise known as a total failure, or a failure of spectacular proportions) on the part of the medical establishment to offer accurate information and supportive advice to the parents when delivering the prenatal diagnosis.   What is wrong with this picture?  Why aren't doctors and other caregivers trained to understand that the diagnosis of Down syndrome is absolutely not a reason to terminate?  I won't even go there in terms of prenatal diagnoses that mean certain death, and/or extremely, medically fragile and complicated lives.   If you believe abortion is wrong, then it is wrong in all cases, no matter what.  If you believe a mother should have the right to choose, then by all means, make damn sure she has the information and support with which to make an informed choice.  

I cannot speak to what it would feel like to receive a prenatal diagnosis.  I had an ultrasound at 20 weeks that appeared "normal" and then, later, out popped little Miss, 9 days early, ready and willing to give me the education I needed to be her Mom, and opening my heart to all others in this world who come into the world with extra struggles. 

I'm so tired of hearing of parents who terminate because they just know they couldn't handle a child with "special needs."  Trust me, every child has "special needs."  They will all test us, challenge us in ways we could not have imagined before becoming parents, and break our hearts at times.   To try to shelter yourself from "imperfection," is to refuse to live, to refuse to embrace what it is to be fully alive.  

I would not trade my child for anything, well, make that both my children, even the so-called typical one (!); and I would not change them if I could.   What I would change is the culture around us that sends out a message that we can somehow live lives free from challenges, filled with "perfect" children, and never having to face an uphill battle.   That is a fairy tale that none of us have actually experienced, and it's time to move on and to embrace human diversity in all its many, wondrous forms.  We are truly all wonderfully made.

The quiet desperation of behavioral challenges

One of the reasons I haven't been posting, and may not get this blog off the ground at all, is that I've been working quite a bit on trying to figure out why little one's behavior is so challenging at times, and what to do to support her at those moments.   Last school year, both when she was in public school briefly, and when I homeschooled her, I was going down the path of trying to figure out, and then get her diagnosed if necessary, with ADHD.  This year my thinking has changed and now I'm researching SPD - Sensory Processing Disorder.  The two conditions share some symptoms and manifestations, but they are treated differently.  Some day when I have time maybe I'll write more on this, but for now, I'd like to focus on what dealing with either of these potential conditions, in addition to Down syndrome, has done to my daughter, myself and other people in her life.   We have good days, great days in fact at times, and then we'll go through a pattern of frustrating, non-compliant, achingly awful days.  Those days I struggle with horrible thoughts at times, wondering why I am stuck in this life, why she can't just do better, and how much I want to flee the situation, if even for a little while.  The other day, after a rough day at school, with multiple instances of running away from her aid and others, then inability to work at all at Speech therapy, then a breakdown at Yoga class; I just wanted to get out and away.  I thought about leaving for a while when my husband got home, but it was pouring rain and I ended up just staying home and dealing with it.  It's funny because my husband said, "Why don't you go to (a local restaurant/bar) and have a drink?"  I think he was kidding!   I haven't even been in a real bar in decades and don't intend to start having a drink for relaxation and falling off the deep end of the slippery slope!   I don't think it's wise to "medicate" borderline depression with alcohol, but I know he meant well! 

When Marisa was in preschool, a 2 day/week Early Intervention program, she was placed as the only girl in a class with 6 boys, several of whom had some pretty severe "behaviors."  I questioned the placement at the time and was told that's all they had to offer.   Things were going along okay and then suddenly, towards the end of the school year, her teacher (who had also been her Case Manager since she was 2 months old) informed me that Marisa had been overly aggressive towards several of the kids in the class.  She was concerned that Marisa had an underlying behavioral disorder.  This came as a complete shock to me because, although she could be somewhat rough at home, and often pushed, pinched, or otherwise got into our personal space, she had never been what I would term overly aggressive.   This happened on two days in the classroom.  I went in to observe 2 days and during that time Marisa did nothing negative at all towards the other kids.  Another ESD employee, a man whose specialty is working with kids with challenging behaviors observed as well and he and I came to the conclusion that the aggressive behavior was just, in his terms, "a blip."   After that, though, I severed ties with ESD.  I did not want to continue to have her in that classroom.  One thing that is very well documented in people with Down syndrome is their great (and sadly often to their detriment) skill at modeling behavior.   I know some of the boys in that class had aggressive tendencies, and although I do not judge them, I had to get her out of there.    She spent 2 more years in preschool but at a wonderful Montessori, not close to home but well worth the drive.   She continued to have behavioral challenges, mostly personal space issues (not so much aggressive tendencies) and non-compliance, but that particular Montessori accepts kids with disabilities and the staff, kids and parent community were truly wonderful.   Marisa thrived there overall.  Her lead teacher has much experience with ADHD and she agreed with me that we might be adding on that diagnosis.  

Cut to what is going on now.  Right now I can't even remember who or what clued me in to the possibility that we are dealing with Sensory issues and not ADHD.   I'm going to a workshop next month on supporting kids with SPD, and have lots of resources to look through to help determine whether or not it is present.  The more I read and hear about it, though, the more it seems to fit, including even the incident in Early Intervention.  Kids with SPD tend to be either over-responsive, or under-responsive (Sensory Seeking) to certain sensations.  It's not generally black or white with these kids and they may share symptoms of being either under or over-responsive.   There is a whole checklist of sensory symptoms and I need to sit down and consider it carefully in terms of how my daughter fits the profile.  I checked with a specialist online and asked if a person could have a mild case of SPD because Marisa shows clear signs of some of the symptoms but doesn't fit at all with others.  The therapist told me yes, you can have mild SPD and still be affected by it.

I like the saying "Behavior is Communication." I heard if from a wonderful behaviorist, David Pitonyak.  He spoke at our local support group's annual inclusion conference a couple of years ago.  I agree with him that the way we present ourselves, in good and no so good ways, is a form of communication.  I think Marisa is trying to communicate her sensitivity to certain stimuli and am sad that it has taken me so long to realize that!   One of the problems with having a diagnosed developmental disability is that there can also be factors in place that go unrecognized.  Only fairly recently have doctors and therapists recognized that people with Down syndrome can also be on the Austism Spectrum, or have ADHD.  It is known that people with Down syndrome often have sensory issues, but it's hard to figure out to what degree and how best to treat them.  

So as I continue on this quest to figure out the best way to support my daughter, I've been having a tough time keeping up with every other matter in an already complicated life.   There is still good news in all of this, though.  Marisa is often times a funny, sunny, charming, loving and very bright individual.  As low as I slide some days when all seems dark, I am comforted by the fact that her behavioral challenges are just one piece of her wonderful persona.   She reminds me daily why I will never fail to fight for what she needs. She is worth all the effort.

New Year, new lease on life

Not sure what happened back in October that made me take such a long break, other than the sheer craziness of the succession of fall holidays with added errands to run, parties to go to, shopping to be done, Christmas programs to attend, etc., etc.  We had good days and not so good days, but were able to do most of what we had hoped to do, such as attend Christmas Eve Mass as a family finally.  Spouse plays guitar sometimes at Mass and he was up front with the other musicians, but Nadia, Marisa, Grandpa (My Dad) and I had good seats, and were able to worship together along with a huge crowd of people we know and people who just showed up for the special occasion.   We made it to Marisa's first Christmas Program at her new school and she did a great job.  Her aid really showed us what a gift she is with the program.  Her kids go to a different school and they had a performance the same night as Marisa's.  Her kids also had an afternoon performance, so she arranged to go to that so she could be there to see Marisa perform in the evening.  She does things like that and endears herself to me more and more the more I get to know her. 

Now that we've recycled the 2010 calendars and hung up the 2011 ones, I look forward to gradually making some positive changes in my life and home environment.  I've been steadily sorting, cleaning, donating and generally downsizing the stuff in and around our home.  I got through most of the stacks of papers sitting on my dining room table (my home office area) before the holidays and am trying not to let too much accumulate there now.  My goal is to have a place for everything and everything in its place early on this year, so I can take a deep breath and enjoy the absence of clutter, in my life and hopefully in my brain as well!    I'm trying new recipes and focusing on adding more healthy ingredients to our daily meals.  I cooked a big batch of kale for dinner this evening and true to form, big Sis didn't go near it, Spouse just "tried" it, and Marisa said "Yummy!"  She is truly my best eater.   I loved it too. 

I'm also trying to not be so busy all the time this year.  I love getting together with my friends but am trying to limit that to just a couple of times a week instead of meeting someone somewhere every single day.  Being at home more by myself allows me to work on the multitude of small projects around the house and offers me the time to work on the book I'm writing.   I've been enjoying some major down time this week so far, but will probably be feeling antsy by next week and asking for more coffee dates once again.  

I've been using a friend's light box to combat my self-diagnosed bout of SAD, and it seems to be working.  I've used it for a week now, in the morning while I do computer stuff, and I haven't been quite as tired or felt as overwhelmed lately.  That's the good news.  The bad news is that if I am convinced it really, truly works, I'll have to spring that budget item on Spouse and listen to his groan.  Oh well.

Here's too more good days than bad, and making small adjustments here and there that lead to a happy New Year.