Emily's sister, Casey

This one is a tough one to write.  It is prompted by an experience Casey and I had on the beach just a few days ago in Hilton Head.  I try very hard not to make the focus of our lives, much less this blog, about Emily.  But the fact of the matter is she brings experiences and reflection to our lives we would have likely never considered without her special diagnosis.  I will live these experiences as a woman and a mother, but never a sister.  That one's all on Casey.  And a day does not go by that I don't pray that she is spared any resentfulness towards having a non-typical sister.  Casey is an amazing big sister to Emily and I believe in my heart 1000% that God gave Emily Casey for reasons so obvious to me and everyone else that you really cannot not believe God hand picked these 2 girls to be together.

 

Their journey together started when Casey was 3 and Emily was a newborn.  Then they were 5 and 2.  Now they are 8 and 5 and life is as it's supposed to be.  And one day they will be 38 and 35.  And life will look a lot differently.  It's easy to see them as children and maybe even older children.  It is not easy for me to always look ahead to adulthood.  Especially seeing Emily as an adult.  I hadn't considered Casey has NEVER thought of Emily as an adult.  Here's how I know:

Sitting in the sand one day watching Casey play in the waves, I saw an elderly couple walking with a man who had Down syndrome.  I assumed from watching the way the older man held the younger man's hand that they were mother, father and adult son.  They made their way towards the water and appeared to be just enjoying the vastness of the ocean before them as they stood letting the water lap over their ankles.  I noticed they had Casey's attention as well as she stopped splashing about and just looked at them.  She finally made her way to me, sat down in the sand next to me and informed me that man has Down syndrome.  I realized quickly that this was the first time Casey may be seeing an adult with Down syndrome, as most of our discussions about disabilities are of kids she sees at school or at Childrens' hospital when we are there.  And suddenly, with tears in her eyes, she told me, "I don't want Emily to be like that when she grows up, mom."  And I froze.  Dear God, I had nothing.  Talk about dropping the ball in the life lessons department, mom!  I think I ended up saying something to the effect of we all know God makes each person different.  But that's another conversation entirely.  And then she was off again to play in the sand without any words of consolation or affirmation that all will be okay from her mom.

A moment, an opportunity to give peace to my oldest daughter, passed.  I failed.  Because I was thinking the same thing.  I don't want Emily to be like that (dependent on her parents) when she grows up either.  Of course, later after I dried my eyes, I thought of all the things that I should have said like both she and Emily can grow up to be whoever they want to be and do whatever they want to do if they work hard and all that.  The mommy guilt was crashing over me like the waves of the ocean my toes were in.  (Okay, the waves don't crash all that hard in Hilton Head, so I'm totally being way too dramatic for poetic purposes, but it kind of works to make my point :)

I haven't broached the subject again with Casey yet, but I will soon.  The moment will be right and we'll discuss how the future is unknown for all of us, but it will be full of opportunity for both she and Emily.  I'll explain how people with disabilities are treated and educated better than they were in the past and that will only continue to improve.  We'll make sure of it.  And I'll tell her how mommy and daddy will be there to help both she and Emily with whatever they need no matter how old they are.  She will, once again, be told that she can ask us anything or tell us anytime what she is feeling.  And hopefully I'll be prepared with some comfort and advice for a sister who is growing up with some unique experiences. 

 

Recently one evening we had to explain to Casey that the reason why Emily was so sad and crying was because kids didn't want to play with her and Emily didn't understand why because when Emily asked they just walked away from her.  Casey went to Emily and hugged her and then out of the blue (kind of angrily) told Tom and I she thought we should stop taking Emily to speech and occupational therapies because all they were doing there was trying to change Emily.  And she thinks Emily is perfect just the way she is and doesn't need to be changed. 

Yeah, I think Casey is going to be a great sister to Emily.  Even at, or maybe even especially, at 38 and 35.    

    




  

Focusing on Emily

June 2013

 

Like most moms, I know my kids.  I know their personalities, fears, strengths and weaknesses.  I accept them for who they are and anticipate who they will blossom into one day.  Watching it all unfold and being there to nurture them as a parent from day one of their lives is a magical gift.  (insert soft, melodic violin music and adorable pictures of my kids)

May 2010

 

Being a mother is such a blessing. (insert more music and angelic pictures of my kids)

Baby Casey

Emily, age 2

Until one of them starts acting like a demon child and all hell busts loose around here. (insert screeching tires and fire truck sirens) 

Now we can have a real conversation, right?

Because being a mom is all that good stuff but some pretty hard, crappy stuff, too.  I won't use this time to whine about my kids not listening, or talking back or consistently leaving food wrappers and containers all over my house.  Instead, I will talk about behavior that isn't solved by a timeout or the threat of taking some privilege away.  

Parenting is like juggling 3 balls, while stirring something on the stove, while wiping some one's nose while solving world peace.  When you have a special needs kid, it's all the same except you add about 4 more balls, a second pot on the stove and some acquired medical skill that falls between basic first aid and being a registered RN.  Any kind of parenting is learned as you go; kids are just unpredictable little beings.  That certainly is a common thread between raising a typical kid and a special one.  You just need to find what's going to work for each kid in each scenario and give it the old trial-and-error.

I have avoided blogging about Emily's behavior for almost 9 months now.  And here is the reason why:  I didn't want people to look at Emily differently (than they already do).  We all wish our kids would behave and perform like adorable, obedient, smiling robots in public, but, of course, that's not reality.  Nor should it be; they are people with opinions and ideas to express.  But most kids also don't completely lose it and begin to scream when they don't get their way.  Or, when frustrated, kick or hit their moms, or even themselves.  Teachers, friends and even strangers have always told me how sweet, kind and friendly Emily is.  And absolutely she is.  Except in recent months when she's at home.  It's not all the time, but things around here have felt unstable where Emily is concerned.  Fortunately, she does not often act out in public or at school, and it's usually only directed at me.  Some days and weeks have been defined for us by how has Emily reacted to simple things like being asked to go to the potty or pick up her toys.  It was getting exhausting.  From very early on, I've realized dishing out consequences her for her outbursts was not going to solve anything where her temper was concerned.  It truly hasn't been like she's trying to misbehave.  I would liken it more to an explosion.  On top of the at-home behavior, her lack of attention and focus was by far her biggest learning challenge this past school year.  She rarely could sit long enough with the teacher to cut a piece of paper or write her name with out being distracted or asking to do something else.  For frame of reference it once took her 45 minutes to put blocks in a bin here at home because she kept getting distracted with other stuff.  

"Who ME?"  Emily, age 2. 

I was getting pretty frustrated and it was obvious she was, too.  At her 5 year well visit the pediatrician and I discussed ADD/ADHD.  I knew next to nothing about ADD, but her lack of focus didn't seem to just be part of the special needs stuff.  The doctor didn't want to start evaluating Emily for that until after she started kindergarten this winter, but I felt that was the road we were heading down. 

Emily, age 5

 

Literally, from day one of Emily's life, I've learned to listen to my gut when it comes to her needs, (if you remember, she was not diagnosed with anything after she was born until my instincts told me to ask doctors to further evaluate her.)  And my gut was telling me to be proactive in finding out how to increase Emily's attention and focus before kindergarten without starting medications for ADD in addition to the listening therapy we're already doing.  I will add here, that I am not against any medications for ADD and I have not done enough research to even know about them all or if Emily would even qualify to take any.  I started to read about ADD online quite a bit and am convinced medications can be life changing for some kids.  And what I read online actually enlightened me to the fact that many children diagnosed with ADD not only have attention/focus issues, but behaviors similar to Emily's erratic tempers and defiance as well.  So I started to google natural remedies to ADD and the ball got rolling from there.

(I totally asked her to look mean for this picture)

 

I feel like I'm getting long-winded here, so I'll start to summarize.  I read some about the success of diet changes and supplements in regards to improved attention/focus as well as behavior.  I called a friend who is a chiropractor for advice. (because chiro's are really into all that natural/holistic stuff and I really trust her)  She recommended I read 'Dr. Bob's Guide to Stop ADHD in 18 Days.'  For the record, I was super skeptical about a book with such a lofty title, I'm not going to lie.  But I did read it and it all made sense to me.  It described how in some kids the proteins in dairy and gluten and other artificial preservatives can inhibit their bodies' ability to send correct and efficient messages through their nerves.  So we stopped (cold turkey) giving Emily dairy and I told no one.  10 days after that, I casually asked her teacher how Emily was doing in class (we had had many a conversation throughout the school year about Emily's focus issues).  Both the teacher and aide told me they couldn't believe how well she was doing that week and she actually sat through a one hour performance when a magician came to school.  The following week was the last week of school and, again, they were commenting on the positive changes they were seeing in Emily's ability to not try to get out of tasks.  After meeting with the chiro, we've continued to change her diet some as well as add some supplements and acupressure treatments.

Grrrr.

 

It's been 6 weeks and I have a different kid.  Don't insert dramatic trumpet music here.  I'm not kidding.  She's still my spunky, sweet Emily who certainly has a mind and opinion of her own and is not afraid to let me know it. (Let's be real, sister is a bossy sort who can throw down a good mad when she's ticked off.  Diet changes haven't made her a robot.)  But we haven't had the unpredictable bursting temper with hitting and kicking in about a month.  And at OT, she's sitting through one hour appointments cutting circles and writing letters like no one's business now.  None of this is to say that she'll never have an ADD diagnosis or we won't ever pursue medications, but it's a good place to start now at the age of 5.  And my gut tells me it's all good and right for us and her.  We're still pursuing some other treatment and it's all new to me, but I keep reading and learning, trying to do best for Emily and our family. 

That's ultimately what parenting is about, I guess.  I thought her eruptive tempers were all part of her 'special needs stuff'; stemming mostly from frustration of the communication/comprehension gap.  I thought this was just life with Emily and I was worried how she and I would manage the future.  I will add an obvious disclaimer to the entire post as we have only been doing this for about 6 to 8 weeks, so there is a chance she is just going through a phase right now and she could revert back to her former at-home behavior.  But it would be one heck of a coincidence.  Our days have been so much more peaceful and I'm so happy that whatever she was struggling with internally has seemed to settle within her little self.  

Love this picture.

Whether the treatments, diet changes and supplements are the only solution will remain to be seen; that's just part of the figuring it out as you go part of parenting.  And I am fully aware that as the communication/comprehension gap continues to widen between Emily and her peers, her frustration will increase and that may be reflected in her behavior.  We'll cross that bridge when we get there.  But at the age of 5, we've got the start of kindergarten on our radar at the end of the summer and that's what we're focusing on now.  I'm relieved things are more peaceful here at home now, but I'm most excited that Emily's focus/attention seems to have improved.  It's like we've unlocked more potential from within her.  And my mom heart beats a little faster at that.  (cue the soft music again) :)