Life with Sophie

So, life with Sophie?  Yeah, it’s completely deserving of it’s own blog.  Too many people go to the “main” blog to hear about the boys and Sophie was really needing her own space   So here we are, on our own so to speak. 

So what is it about Sophie?  If you’re reading this because you linked over from my other blog, then you know all about Sophie already   If you’ve ever met us IRL then you know all about Sophie just from the experience of meeting her!  It won’t take long for anyone reading this new blog to understand who interesting life with Sophie is… but I will give a little background

Sophie’s a y2k baby  

After several years of noticing her odd and sometime unusual behavior, our pediatrician suggested that she see a Developmental/Behavioral specialist.  We are very lucky to have a pretty incredible D/B specialist right here in G’ville.  We were given a ream of documents to fill out about how we observed Sophie’s behavior as compared to her peers.  Our first meeting with Dr. Kelly was abysmal as Sophie was desperately sick (running a fever, melancholy and listless) but it’s near impossible to reschedule an appt with Dr. Kelly so I took her anyway.  She spent the whole time sitting in my lap looking miserable and acting very unlike herself.  So Dr. Kelly decided to save his assessment for the next appt and off we went.  The next appt…. my goodness!  Sophie was in rare form!  She did pretty much all of her atypical behaviors right there for him and so he diagnosed her as ADHD, PDD-NOS.  Our 3rd appt was a fiasco.  By the end of it Dr. Kelly was suggesting genetic testing and deeper neuro testing to pinpoint her actual “real” diagnosis.

I cried.

So much of what is Sophie is beyond the atypical behavior and I find myself struggling to explain Sophie in short blocks of time to doctors who hold her fate in their hands. 

In the beginning I told them all that I didn’t want to change the magic that is Sophie.  There is a quality to Sophie that I’ve never seen in other children (even my own!).  She has a deep intuitive nature.  She knows instantly if she’s going to like to dislike people, she reads the mood in a room easily (and responds to it appropriately).  She is a very intense painter.  She spends days working on one painting only to declare it “bad” and paint over it (it’s happened more than once to a painting I actually liked… but such are artists!).  She loves well written stories and will not abide poor literature (sorry Enki… lots of your stories are poorly written).  Contrary to popular belief, she can have her feelings hurt and has when she felt jilted by her friend.  She loves to play!  Not just sit around and talk… but really play!  We have imaginary jousts and tournaments many times a day and we act out stories and movies often as well.  She is exceedingly social.  She LOVES people!  She loves large groups of people… festivals, parties, community outings… she loves being in the mix with people and she loves talking to new people!  One of her favorite things is to go walking in downtown G’ville.  She says hello and good day to everybody (literally everybody) she meets.  She did this in KG and KZ too, although she was sharp enough to change her greeting from “hello” to “privyet” so that she would be more easily understood.  She seems to draw people to her and typically people adore her and find her very endearing.

I still don’t want to change that about Sophie.

The only thing I wish I could do was talk to her.  Sit down.  And talk.  Like a conversation.  Something like this:

M: Sophie, what do you think of Harry Potter?

S: Oh Mommy!  I love Harry Potter, especially the part where Harry turns into a fish!

Currently that conversation goes like this:

M:  Sophie, what do you think of Harry Potter?

S: Sophie watch Harry Potter?  I said please Mommy!  Pleeeeaaseee!!  (insert varied HP quotes)

Not exactly a conversation.

That’s not to say that Sophie doesn’t have conversations, she’s just not into answering “what do you think” type questions (unless she’s nearly asleep and then you can ask her anything and she’ll answer… it’s very interesting, but hard to accomplish because she usually falls into a hard sleep fairly quickly).

Sophie tends to speak in quotes.  Her current favorite is “Get out of my life!”  I’m not sure where it’s from, I remember hearing it, but can’t place it right off.  She uses this one anytime she’s having to endure something she doesn’t like (such as having her hair combed).  She also does sound bites of songs.  Her dinner time favorite is the Dirty Food song from Yo Gabba Gabba… she thinks it’ll get her out of having to actually eat everything on her plate.  So far it hasn’t worked, but she tries anyway.

Sophie can get fixated on things.  Our last appt with Dr Kelly was a prime example.  The night before we had gone to Frankie’s Fun Park and had promised Sophie 2 rides on the go-carts.  Unfortunately we only did one ride because of a bathroom related accident.  She was mad at me from then on and it carried over to the appt.  On leaving the office we went by Frankies to allow her to have her 2nd ride and order was restored to the world.  I had a great conversation with Dr Kelly about how to deal with these kind of situations.  Basically he said we were right to take her back as her anxiety level would just continue to skyrocket because I had told her that she could have 2 rides and I stopped her after one.  Atypical children do not do well when you tell them one thing and then do another.  It’s not the first time we’ve “given” in to lessen the hysterics.  People have called us indulgent, spoiling and even “bad” parents.  It always makes me mad, because they don’t know our situation.  They don’t know what’s going on and they don’t know what it takes to live with Sophie.  If buying the same book for the third time makes her happy then I’ll do it as otherwise she won’t rest about it until she gets it… no matter how long (a day, a week, a month… she won’t let it go).

We have to be very careful of where we go and what we say to Sophie.  If we’re taking her into a situation where we know she has “triggers” we have to prepare her ahead of time for the possibility that what she wants will not come about.  She still will melt down, but usually she gets over it more quickly.  We’ve gotten pretty good at redirecting her, but still we have to stay one or two steps ahead to keep things even remotely in order!  It helps that we have a really great sense of humor and very little concern of what “people” think.

And then there’s the “other” thing.  Sophie has some pretty substantial allergies.  She is highly allergic to perfume, cosmetics, and anything scented.  If she comes into contact with it she breaks out into a rash and becomes hyper.  If she has prolonged contact she’ll start having a hard time breathing and could eventually quit breathing altogether.  We’ve been thoroughly warned by her pediatrician that she can never be in a situation where she could ingest or inhale perfume or cosmetics or home fragrance or anything scented or like makeup as it could be fatal.  We never leave home without Benadryl.  Ever.  I hate to think of all the bottles we’ve gone through in the past few years.

Sophie’s also allergic to food coloring.  Red #40 specifically.  There’s a high probability that she inherited my family’s propensity for Stevens Johnsons Syndrome.  We are allergic to sulfa drugs and from a young age I was told about Stevens Johnsons.  I took Keflex (which is not a sulfa drug, but behaves as a sulfa drug) many years ago and had the classic head to toe rash, fever, respiratory distress.  If not for my quick witted mother I would’ve ended up in the hospital with possible long term damage!  Thankfully I got off with a really annoying rash and  2 weeks of being unable to go in the sun.  At the time I didn’t really realize how bad it was.  Now I do.

So… I have an atypical, possibly ASD, daughter, who has incredible environmental allergies and possibly SJS and also has been diagnosed ADHD.

 Life’s bound to be interesting right?