Sunday, October 19, 2014

Big Bad Down Syndrome


I have never heard another parent talk about this so I feel like I'm going out on a limb here.  Also this one was hard to find the words but it's something I have been thinking about a lot, so here goes.  



In the not too distant past, when I looked at my beautiful daughter Claire nearly all I could see were the things that were going wrong, the things I was blaming on Down Syndrome.  Perhaps because I needed something to blame or because we have just been through a lot of traumatic events this year, regardless Down Syndrome changed in my mind into the bad guy.  Like a transformer or, what are the bad ones, a deceptacon, Down Syndrome because a villain instead of a diagnosis, something to battle daily.  I was missing Claire, who she was, because when I looked at her I saw big bad Down Syndrome.   




In the middle of last school year Claire's behavior changed dramatically.  She was unpleasant to be around to say the least: hitting, kicking, shouting, grunting, grumping...  Nate and I were baffled.  We looked into behavior therapy and counceling.  We had to give away our older dog because Claire would come home from school and just start kicking him out of nowhere and of course he bit her.  People literally told me "I just don't like being around Claire anymore."  We didn't know why she was acting out.  I attached all of unpleasantness to Down Syndrome.  Some kids with DS struggle with this same aggression we were seeing in her.  We thought, maybe this is just what we are in for now that she is growing up.   




Long story short, we decided to homeschool Claire for the rest of the year.  She was stressed at school and after she had been home for just a few weeks all the "big bad Down Syndrome" behavior began to melt away and I could see my little girl again.  Nate and I were so relieved that angry Claire was not here to stay.  


I have been left with questions about the way I reacted to the situation though.   Obviously this was not Down Syndrome at all.  Around the same time a friend asked me "what do you think Claire would be like if she didn't have Down Syndrome?"  The question struck me, nocked the wind our of me.  What would she be like, I couldn't say because I was so focussed on all the things that were going wrong and blaming them on Down Syndrome.  



When Claire was acting out it was not Down Syndrome, it was just Claire.  Her behavior was her way of telling me: I'm not okay, I am stressed out...  I was so quick to see "Down Syndrome", blame the bad guy, that I was blind to what was really going on with Claire. 



Things have really calmed down around here and Claire is doing very well, she is so resilient.  I am still processing everything that happened this year.  What can I learn from even the hard things?  I don't have an answer for a lot of it.  One thing I would like to grab onto and never forget is to see Claire for who she is.  I don't want to blame Down Syndrome or give it way too much credit.  I want to give Claire the benefit of the doubt that she is communicating in the only way she can right now.  I don't want to miss her even on the hard days.  I see Claire more clearly now, a new layer of who she is and that is something to be thankful for.


This is so much more then Claire and "Down Syndrome" though.   I don't want to label, to blame, I want to restore.  When I slap a name on something, put it into a box and move on I miss the person. Every bio parent we work with through foster care is a person with a story.  Every neighbor has the same felt needs I do.  God give me the eyes to see the person through their circumstances and have compassion. 


Friday, October 17, 2014

School Picture

School pictures came back yesterday! 


This picture just makes me giggle, so cute. 

Thursday, October 16, 2014

Claire Goes To Collage

Whitworth has an amazing literacy center!  On the last day of "summer school" Claire cried because she was so sad it was over.  The teachers are so kind and genuinely love Claire.   Most days at pick up their report to me was "Wow, Claire just tries so hard.  I'm so proud of her."  I had to hold back my tiers because those simple words meant so much.  It's such a ray of sunshine straight to this mommy's heart when someone believes in Claire. 


Literacy center runs all year but we only go in the summer.  This was Claire's second year in the program.  The progress Claire makes over the summer is so impressive.  I was originally thinking I just didn't want her to loose what she had gained over the school year but it is so much more.  She is now sounding out words (WAIT, can we take a moment here? CLAIRE CAN READ!  Woot Woot!!) and I am positive Literacy center played a hugs role in that.  The teachers and collage students are fabulous and make it fun for everyone!  It is a very positive experience for Claire which we desperately need after all the negative experiences we have had with school.  She loves going to Whitworth. 


Every Thursday is dress up day at lit center, thus the costumes. 

and let me know if you want to carpool! 



Wednesday, October 15, 2014

Waiting For Forever

Tonight, a pug for all the children in our community waiting to be a part of a forever family. 

Claire was adopted in 2010, wow how time flies! 

Claire and her cousins



There is a huge need for adoptive homes in our state, can you even imagine, 2,783 kids just hanging out in foster care, waiting to be adopted?  It blows my mind!

Tuesday, October 14, 2014

Suffering?



The truth is, the majority of people who have Down Syndrome in America will never be born.  You know I agree with Dr. Seuss "a persons a person no matter how small."  But there is just one train of thinking that keeps coming up when I here about this issue I want to talk to you about.




Here it is "I don't want my child with Down Syndrome to suffer so I'm doing the merciful thing by terminating this pregnancy."   


First, no person was ever born who did not suffer in the history of forever!  Struggle is part of the human experience.  We are all going to have challenges, joy, pain, sarow, triumph .. because we are alive. 

Okay, then they say, "No, my child with down syndrome will be mercilessly teased and told they're retarded. They would hate their life because their life would be so miserable… I'm just trying to spare them" 


And you could all chime in now too, people with Down Syndrome are not suffering.  They are just people, they have challenges as we all do but they can also find joy in their lives, something people without an extra chromosome often miss out on.  People with Down Syndrome Overwhelmingly, way, way above the statistics of people who do not have down syndrome love their lives! They are glad to be alive to be a part of their families and communities.  



Please, don't let someone tell you abortion is merciful because children with Down Syndrome are suffering. This is one of the most important reasons I do this blog, so you can get a glimps of our real lives with Claire.  Odds are one of you or someone you love will be faced with this decision some day.  Come hang out with Claire for an hour, talk to us about her life, get educated about these amazing PEOPLE who happen to have an extra chromosome.  

I could almost go for "We might struggle financially." or " They will take over my life."   Because at least these things are true. You might have to find grants and nonprofits to help you along the way.  There are tons of great resources out there and we have never struggled financially because of Down Syndrome.  And yes, your beautiful child is going to change your life forever, change so much of who you are and who your family is in all the best ways.  



When Claire was little and people found out she was in foster care some families  literally asked me if I would give her to them so they could adopt her. There are so many people out there who want children with Down Syndrome, waiting lists in foster care, organization set up just to get children with Down Syndrome from other countries into America to adopt. They are wanted but more then that they are people just like you and me.  


Monday, October 13, 2014

The First Few Days

For my friend and fellow adoptive mom Karen, thank you for the thoughtful question.  What a good one it is! 

Can you write about "being a mom of kids God planned for you?  I would love to hear about those first few days she was with you.  How you felt: scared, joyful, anxious, reclusive, thankful, humbled. We go from no children, no pregnancy and then baby!" 


I have never written about Claire's first few days with us before, crazy! 
This is kind of a two part question so tonight I'm just going to tackle what the first few days with Claire were like and IOU part two about going from being a young married couple to parents overnight. 


Claire was a tinny ten month old, strawberry blond, big blue eyes baby when she came to live with us.  She was like a newborn, she could't hold a toy in her hand or even hold up her head.   She had spent the majority of her life in the hospital and it kind of felt like the hospital moved in with her.  Claire brought: at home oxygen, travel oxygen, wedge, a huge feeding pump, all the tube supplies, (bags, bandages, tubbing, syringe, tape, ointments...) special formula, IV pole, oximeter, nebulizer, many medications... Nate was comfortable with the live-in hospital, coming from a medical back ground but I felt like I had just been thrown into the deep end after one very short swimming lesson. 



She felt so fragile to me.  A pink band of scar raced from her nest to her belly button and scars dotted around her abdomen.  The many surgeries she had already undergone in her short life were astounding.  She had an angry red tube sight that would oozed from her stomach if not constantly cleaned and managed. Her reflex would cause her to turn blue wrethching and not being able to vommit with her fundoplication.  She was not like holding any other baby, almost like a doll.  Her whole body was low-tone and she really didn't even try to move much.  I would sit on our couch holding her, a little scared to brake her and she would just stare at her hands totally content for hours.  I felt so responsible for her safety and afraid she would get sick and need to be hospitalized again.  I would go into her room while she was sleeping constantly and make sure she was still breathing even though she was wearing a machine that would beep if she stopped breathing.  I couldn't understand how Nate was so relaxed when I was so worried I couldn't sleep.  I worried about her medications, breathing treatments, tube feeds,  if I was going her therapy correctly or even able to get it all in with everything she had going on, if her breathing sounded okay with her history of pneumonia... 

Adoption was not a thought at this point because her family was very involved.  I was just doing, doing, doing all the time.  It was a huge responsibility caring for her many needs and that was about all that was on my mind those first few days.  I felt humbled by the weight of it.  I was also a first time foster parent.  I was struggling to learn how to interact with this new system that quickly would take over my life.  What are the rules?  When you have a child who has special needs in foster care it can get pretty confusing for a while.  Each situation is so different, you have to find the balance with social workers, birth parents, the child's needs and my life.  I was meeting new people every day, like a revolving door in and out of the house.  It's a crash corse in advocacy.

                              

Looking back, we just had no idea Claire would stay forever.  I have started out differently with each foster child we have had sense, lesson learned.  If I could give myself a piece of advice back then I would way just be her mom, love her.  I was confused about my role.  Am I therapist, social worker, visit supervisor (the visits were in our home), aunt (Claire was a relative) support person for the family (again, a relative)... It took a very long, painful road to learn that the most important thing is to love her.  Not the million things everyone was telling me to do or not do, just enjoy Claire in the moment just simply for who she is. 


Sunday, October 12, 2014

Sisters, Sisters, There Were never Such Devoted Sister

This one's for you Melissa, thank you for the great question.

"How do your other girls understand and interact with Claire and how has it changed as they grow?"


First there were the twin years, Makenna and Claire were the same size while Makenna was 2 to 4 years old (at that time Claire was 4 to 6).  Claire's delays brought them close together in development as well.  They both didn't know any different and truly loved eachother for who they were, no questions asked.  Makenna and Claire knew there were other people with Down Syndrome because we had play dates with them and did the DS events but they didn't understand what it meant.  It was as simple as some people do and some people don't: Claire has Down Syndrome, Ella has Down Syndrome, Makenna doesn't have Down Syndrome, Mommy doesn't have Down Syndrome...   

Makenna grew well past Claire and now Alice and Claire are frequently mistaken for twins.  They are two peas in a pod.  Alice and Claire play so well with each other.  If there is a disagreement they can usually work it out on their own.  Alice has a laid-back personality and such a giving heart.  They also enjoy the same kinds of games (stuffed animals, dress up, doll house, imaginative play) and can transition from one activity to another quickly with no issues.  If Alice wants to be a cat and Claire wants to be a princess, no big deal, it's princesses and cats.    

Makenna and Claire are butting heads a lot more these days.  Makenna is a leader and Claire can be stubborn so when they disagree no one backs down.  Makenna is not a go play kind if girl.  She always wants to be with Me or Nate asking questions and wanting to participate.  If Makenna is doing something independently, usually a craft project that involves some sort of huge mess, she wants me to watch her.  Totally not Claire, she wants to play independently, play with one other person or be alone.  They are still good buddies but their play takes a lot more compromise on one part or the other.  I think it's just their ages, personalities and also probably just a phase.  I don't believe their squabbles have much to do with Down Syndrome as much as the fact that some kids like different things and are inclined to bug each other more.  We see this with our friends and foster children a lot.       
  

Once Makenna started preschool at 4 she figured out when people typically "do things."  For example she would come home from preschool and tell me "when you are 7 you can read but Claire is 7 and she can't read..."  Claire and Alice still thinks of Down Syndrome like an eye color but Makenna now understands that there is more to it.  She can pick out people who have Down Syndrome by seeing their faces and she understands some of the challenges they face.  She knows it's not normal to have 8 teachers (gen ed, special ed, paras, therapists...) or have two classrooms like her sister does.  She knows she is passing  Claire physically and developmentally and she knows it's because she does not have Down Syndrome.  Parenting is more of an ongoing conversation then a moment where you sit down and have "the talk."  It's lots of little conversations, snippets with Makenna that have gotten us to where we are in her understanding. 

Makenna has really taken on the oldest child role, she is "the big sister."  It was time for Makenna to lead Claire and Alice.  The old parenting 101 statement  "you are the oldest, please set a good example for your sisters" didn't work.  Claire is the "oldest" and Makenna is the "biggest."  She likes being the biggest because she understands that her responsibilities (mainly setting a good example) come with privileges. 


When kids or even adults gets frustrated with Claire we talk about it but I don't EVER say "well, Claire has Down Syndrome..."  It's so tempting to let Claire get away with something that I wouldn't let slide with Makenna or even Alice.  When Claire is on a role she will do the same behavior over and over to see how long it will take before I give in and let her get away with it.  I don't want to give in for so many reasons.  For her siblings I don't want to plant that seed in their hearts that "Claire gets away with everything" or "you give her everything."  Growing up as a triplet I know how poisons that thinking can get.  It's so tempting to compare your life to your sibling and become bitter when you're all going through the same things near the same ages.  So far this has not been an issue, it's just something I check myself on a lot.   (Side note- Honestly if anyone said "it's not fair Claire gets..." it would be hard to resist not painting out all the things in Claire's life that she struggles with on a daily basis that are just not fair.)  One piece of parenting advice you'll get from seasoned DS parents is "treat them just like your other children."  Okay, wise ones, we are trying but I'll be the first to say, easier said then done! 


I'm constantly thinking about our daughters relationships with each other and how I can nurture their bond and compassion for one another.  I want to do everything I can to make them a team.  I wish it were as easy as telling Makenna and Alice "Claire is so special, you should love her and protect her."  Makenna and Alice learn how to treat Claire by the way Nate and I interact with her.  When Makenna loose her temper with Claire the words coming out of her month are the very same words I use when I looses it too with her too.  Yep, I just admitted that, Claire can be very frustrating and sometimes I do loose my composure.  It's a huge wake up call to here Makenna use my words.  We teach our kids how to teat others and how to expect to be treated by the way we treat them.  That could really be a whole post on it's own.  

P.S. I write a post about siblings every year.  If you feel like a blast form the past.

2012 Siblings and Down Syndrome  -Balancing all the extra attention that goes into a special needs child and their siblings.  Basically, everyone gets extra special attention. 

2011 Big Sister  -Claire's just a sister with her baby Alice. 

2010 Claire's Best Friend  -Claire and Makenna's special bond.  Man did they get into trouble together as toddlers! 

BONUS!!! Be the first to name the musical that the title for this post got it's name from and I'll send you a Claire "be a fruit loop in a world full of cheerers" button.