Miss Callie

So the only reason I share these things about Callie is because I want to be able to remember what we have gone through with her.  I want to be able to show her how far she has come and how much she has learned.  I want her to know how much she has taught us.  A few months back I was going to do a spotlight on her for a blog but the more I thought about and discussed with Clint we both decided it was not the best thing to do.  But I was able have the lady ask me some questions and it really made me sit down and think about our journey and really think about where we are today.  Callie has come so far and I am so glad that we are where we are today with her.  We still have so far to go, but to see her so happy and less stressed now and GROWING has been my goal.  She has made some new friends, but her all time favorite friend she has made has Downs Syndrome and her name is Gabrielle.  Callie is trying to learn sign to communicate with her.  It is so cute.  Callie is everyone's number 1 cheerleader, the sweetest, most kind girl ever. 

Now to post from the interview I was going to do to tell you a little bit more about her.

Callie was a dream baby.  She was sleeping through the night at 6 weeks.  Would go to bed at 7 and not wake up until 9 the next morning and then take a 4 hour nap during the day.  We felt pretty lucky being first time parents.  She was extremely laid back and really would just sit in one spot and play with toys.  She hit 6 months and started sitting up and we kept waiting for her to crawl and would try motivating her to crawl but she had no interest.  When she turned 1 was when she started crawling...We thought that shortly after that she would begin to walk since most kids at the age of one start walking.  Just before she turned 18 months is when she started walking.  

As first time parents we just blew it off but thought it was sort of weird that she hit her milestones late.  What was funny though was that she was speaking full on sentences before she could walk.  The cutest part of her talking that well so young was that she would over enunciate most of her words and would start up conversations with the people at the checkout lines in grocery stores

When she started preschool is when I really started noticing the big difference between her and most kids her age.  Especially when it came to her learning her letters, numbers, colors, shapes etc.  It took her the entire year to learn to write her name and at that it was still hard to read.

It was around this time too that we  noticed that she would sense things differently than most people did.  Callie doesnt sense hot and cold very well.  She knows what they are but is not phased by them.  She would wear sweats in the dead heat of the summer or a swimsuit outside when it is snowing.  She has a high  pain tolerance, and has a hard time sometimes being able to tell you where exactly something hurts.  The interesting thing about pain for her though is she has an unusual fear of pain even though when she gets hurt it doesn’t bother her, but if she has to have a tooth pulled or a shot she is scared out of her mind.   If she has a stomach ache she couldn’t tell you if it was because she had to go to the bathroom, if she is hungry or if she is sick.  She is a thrill seeker.  I call her my roller coaster junkie. She also since a baby has pulled her hair out and has had many bald spots on her head.   She does not have boundaries and does not understand that people have personal space.  We will be in public and she will just walk up to a group of people and just sit and listen to their conversation, at times like that I just have to give the verbal Que, “boundaries” and she clue in and walk away.  She has no organizational stills.  Everything is always cluttered, messy, in piles, wrinkled, crooked, lost, or stashed.  She becomes over stimulated really easily and needs to be on a schedule.  As long as we stick to it she functions much better and you can manage her better because if she is overly tired, overwhelmed with school, she is very prone to tantrums and there is no reasoning with her so often times we just remove her from situations and she needs her “quiet time” and then she can come back.  She has the need to have to touch EVERYTHING...but not just touch...It almost like she has to taste it, smell it, touch it and hear it, to understand what it is.

At what point did you finally get a diagnosis
and do you remember how you felt?  Can you compare

those first thoughts and feelings with how you feel now?

I didn’t take her in to have her diagnosed until she was about 6.  The Dr. told me she had ADHD and wanted to put her on medication.  As her parents we never felt like that was for her and I feel she was just given a general diagnosis and my mothers instinct told me that was not a right diagnosis.  I continued to research on my own and one day came across (SPD) and a light bulb went on in my head.  I asked her pediatrician about it and he just kind of blew me off.  It wasn’t until she was 7 that I finally had someone confirm to me that she did have (SPD).  It was the occupational therapist at her school she was working with.  He was fantastic and would give me a bunch of ideas I could use to help her at home.

When she was younger it was really frustrating working with her and trying to understand why and how she was doing things.  I would tell myself all the time that I would love to be in her mind for just one day.    It was especially frustrating when it came to her school work because you would think she should just be able to write her name, or know her numbers, her colors, should be able to read especially when she was going into the 2nd grade and still struggled.  I had to fight for her to be put into the resource program at school and since she is in there now it has been a huge blessing.

It was when we finally recognized what and why she struggled with school and why she did the things she did that I accepted it and just went with it. Anyway, so needless to say, we feel so much better about things now that we know what direction we are headed.  We still stress about her with her schooling and trying our very hardest to get her caught up to where she should be.

Explain how your daughter’s needs affect your day-to-day life?

Like I have mentioned she really has a hard time in school.  She is in third grade and is only on a 1st grade level.  Callie is extremely intelligent!  You would never, ever know just by talking to her that she had so many struggles.  But to us they are not struggles they are just who she is and have shaped her into the wonderful little girl she is.  Homework is a battle every night.  In first and second grade she was doing over an hour of homework a night and it was soooo frustrating for all of us.  We would have to isolate her, try and get through it and walk away exhausted.  This year we have moved and are in a different school and they have a different approach to her homework which I love and it is going so much better.  She spends about 2 hours a day in the ‘learning center”.  The teachers in there have become her friends.  They told me in the many hours I have spent in meeting with them that they have found that the best way to get a child learning faster is boosting their confidence and having them start to do things independently that are at her level.  She works really hard on her work and for the first time ever does it independently, which is absolutely incredible.  We have to go over all of it after and make sure it is correct and that we can read her writing.  (she really struggles with her writing and its very hard to read).

We are constantly reminding her of boundaries.  She has no understanding of how much of something is too much.  So you have to constantly watch her to make sure she doesn’t use the entire bottle of shampoo, or that she doesn’t poor a whole box of cereal, or that she doesn’t use an entire bag of pom poms on one page, piled on top of each other for an art project.  (can you tell i’m speaking from experience? lol) She can walk into a room be in there for 30 seconds and some how the entire room looks like a tornado hit it, it is really hard to keep up with her messes.  These are just a few of the things we deal with on a daily basis with a child like Callie.

                                                                                                       

Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs
situations?  

I have thought many times as to what story I would share because there are so many because in hindsight looking back at the things she has done there are some really funny ones.  But the most recent one is the other day we were walking to school and she was limping.  I asked her why she was limping, she said she didn’t know.  Well a few days earlier we noticed a giant spot on the heel of her foot that we have no idea what she did.  Anyway..so then I asked her if it was the foot she had the spot on...she takes a few more steps and goes yes.  So then I asked her if it was hurting where he spot was...She stops, has this look of wonder and concentration on her face, takes a few more steps and then goes, oh ya that’s where it hurts.  I just started laughing and told her she was a silly girl.

I'm especially interested to hear how people react to your daughter when you're just out and about on a daily basis.  I would imagine you get a lot of judgement for how's she's dressed (too hot! too cold!) and I'm
wondering how do you handle that?  Do you let it roll off your back, take a moment to educate, or make her wear a sign that reads "I have a sensory processing disorder and I don't feel temperatures the way you do
so BACK OFF!"?  Has her condition ever brought tense moments between family and friends?    

Because Callie really is just a regular child, not many people have any idea that she has battles.  It is hard when she throws fits in public especially at the age of 8.  Thats when we know she has had enough and we just need to get her home.  When I am with others and she does that I just say to them, she gets over stimulated easily and leave it at that.  Most of the time they won’t ask more questions.  I have fully accepted Callie for who she is.  If others have a problem with who she is that is their not mine.  I tell myself all the time, it is what it is.  She does dress pretty sloppy and I have to remind her often that our underwear shouldn’t be hanging out of our pants or that your shirt in on backwards and inside out.  Most days her underwear is on backwards, i’ll tell her and she just says oh well and since you can’t see her underwear that is one thing I do let go.  Her pants or skirts are often on crooked, so i have her go look in the mirror and have her tell me what she thinks needs to be fixed with her clothes.  I just want to avoid her being made fun of by other kids because of how her clothes are.

What is the biggest lesson you’ve learned in this sensory processing disorder journey?   

I think the biggest lesson I have learned is to not judge others.  Don’t judge others for their kids struggling in school, you might not know why.  Because for us I know we have worked our butts off and she is still where she is at a first grade level.  Don’t judge the parents or another child.  You just never know what goes on behind the scenes of everyones lives.

One last thing I would like you to know about my daughter is that she has the biggest heart of anyone I know.  She

is the sweetest, most kind hearted, giving person I know.  She just recently has become really good friends with a downs syndrome girl at school.  They eat lunch together every day, have had a few play dates and she is currently trying to learn sign language just so she can communicate with her better.

I always tell people she will be the worlds best babysitter and when she grows up will most likely be the mom that has quadruplets and rock being a quad mom.  She LOVES kids, taking care of them and anyone else for that matter

If anyone is interested in learning more about Sensory Processing Disorder (SPD) you can go to http://www.brainbalancecenters.com/blog/2012/04/signs-and-symptoms-of-sensory-processing-disorder