Saturday, March 31, 2012

One Year Ago and Today

One year ago...

It was this day in 2011 when I faxed off our first request for a speech assessment for Sarah.  In some ways I can't believe it's been that long and in others, I feel like it's been the longest year of our lives.  We have faced so many ups and downs when it comes to all the things Sarah has been through.  I've lost count of how many doctor appointments, specialists, assessments, procedures and tests we've gone through.

What do we know now?  Sarah has been diagnosed with microcephaly, cerebral palsy, global development delays and now possibly sensory processing disorder.  That's quite a plateful for such a little girl!  I wish I could say I've had great amounts of faith this past year but that wouldn't be the truth.  It's come in waves.  Some days were (and will continue to be) harder than others and it's those days that I need to remember my childhood rearing of trusting in Him.  I know better.  I was brought up that way.  Application of what you know is often harder than it seems though.  I keep trying and each day I learn something new.  My little pixie girl has taught me so much about life and unconditional love and she is no different today with a diagnosis than she was a year ago without one.  She is charming and sweet.  Each day she tackles a new challenge and is learning so much.


This evening our church was blessed to have the Watoto African Children's Choir perform for us.  Such amazing stories of children's lives that have been changed.  Their faith is one that I'd like to have!  We attended this concert as a family and made sure we'd be there early for a good seat.  Sarah was loving the 30 minutes beforehand.  She ate her snacks, toddled from me over the aisle to her Grandma and then back again.  Then the music started and she had a meltdown.  Her poor sensitive ears just could not handle the *noise* that she was hearing.  She clearly couldn't discern music and was so overstimulated, that Doug and I took turns with her out in the foyer.  When Doug brought her back for the final few minutes, Sarah's head was on my left shoulder and my left hand was covering her ear.  Her right side was pressed firmly against my cheek in her attempt to block out the drumming.  As the momma bear in me was trying to fiercely protect my little cub, the tears began to fall.  I was hurting for her.  I was sorry I brought her in the sanctuary to begin with and wanted to do everything in my power to make her feel safe.  That's my job.  To protect her and ensure that she is comfortable where she is.

As I tucked her in to her bed this evening I just held her close and promised that I will go to the ends of the world to make sure she is taken care of... if not by me or her daddy, then by someone she trusts. 

Thank you for praying for us as we began this journey.  It is far from over but I think we've made great progress over this past year.

Tuesday, March 27, 2012

Seven Quick Takes (Vol. 3)

A lot of changes have occurred in our family.  Doug is currently looking for a new job and I keep remembering the verse from Jeremiah 29:11 - For I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future.  There is a plan for us.  I can't wait to see what it looks like!

I think the kids and I have spring fever.  Despite a bunch of snow that fell late last week, the bikes are still out and they continue to be outside.  It would be so nice if the weather was a bit warmer to melt the last of the snow which would make it warmer.  In anticipation for the spring weather, I bought us a used bike trailer/stroller for Sarah.  I'm looking forward to getting back on my bike and getting outdoor exercise.

Sarah... she has been making such great strides in her speech.  So much so, that we are no longer in the "Play & Say" program at our local health unit.  This was a one on one session that allowed a speech pathologist to see where Sarah was at and to offer suggestions and ideas to me to help her improve.  One of her newest sounds that I'm so happy about is the "sn" sound.  She went from saying "sake" to "sNake".  I'll credit our trip to the museum for that.  She still loves play-doh and Curious George.  I recently bought her a few pairs of yoga/cotton pants so that she doesn't have to be in jeans all the time and my other wonderful find was onesie diaper shirts that fit her!  That means for her, she doesn't have to have the pants waist band rubbing on her skin which is something that she really doesn't like.  These changes will hopefully help with her Sensory Processing issues.

Each of my older kids are now in the next grade of math.  They are all so proud of themselves and I of them as well.  This is one {of the many} things that I just love about homeschooling.  There is no need for them to stay at the same level as everyone else.  On the flip side, when one of my kids needs some extra attention on an area, I am able to provide that to them without having a huge impact on the entire "class".

I was once asked in a Bible/book study, what did I think I was created to do with my life.  I firmly believe I was born to be wife and mom.  For as far back as I can remember, I played house or dolls.  I was always a little momma to an assortment of babies.  It wasn't long after we were married that Doug and I began our family and now with our amazing four kids, I feel like I'm living my life to the fullest.  I didn't always envision home education in my play but I also know that it is God's leading and His will for me to do this with our kids.  They make me so proud and I love seeing them grow up and become their own individual persons. 

I need to get my camera out more often.  I love seeing the world through a lens and I've been missing it lately.  I can't wait for the weather to improve a bit for some great outdoor pictures!

And that's it for today.  Only six takes this time.

Friday, March 16, 2012

Sensory Processing Disorder

So when this {unofficial} diagnosis was brought up last Friday, I began to think about how I process certain things, especially sounds.  I seldom listen to music in the house.  I don't like "background noise".  If our dishwasher is running, someone is playing a video on the computer and another is puttering on the piano, I quickly become overwhelmed and must make it all stop.  I don't care for large groups because I can't focus on one particular conversation; there's just too much happening for my brain to process it all.  I seldom listen to the radio in the van, especially if my kids want to talk to me.  I usually drive in the quiet or, have music on from my iPhone.  I think it's the extra talking {from the radio} that gets me agitated.  My sister and I agreed that our mom was that way as well.  If we began to talk in the car, she would quickly turn the volume of the radio down.

I was talking with my sister about this the other day and we wondered if my struggle with auditory processing was the reason for my dislike for school and consequently, poor grades throughout.  It's unfortunate that there were not as many options back when I was in school as there are now for students.  I think Joshua may have a bit of it as well.  He works best in a quiet and clutter free environment.  Knowing that he has these struggles, I can ensure that his space is tidy and I try to control the amount of noise going on.

Just some interesting food for thought... maybe Sarah's not alone in this one...

Update on Sarah - 03/16/12

One week ago, we had a home visit from our EI Counselor.  We talked about new games, toys and ideas to help Sarah with her visual memory recognition skills.  This is one of the areas that she is the most behind in.  She has a hard time sorting, remembering and matching.  Puzzles come fairly easy as long as there is only 4-5 pieces but she can't sort things into color groups well. 

About 6-8 weeks ago, one of Sarah's friends gave her a monkey back pack.  It's not so much a back pack as one of those things with the leash attached for when you are at the mall and you want to keep track of your child.  We haven't use it as that, but Sarah wears the back pack ALL. THE. TIME.  Wendy had noticed that and made a suggestion of the possibility that Sarah has Sensory Processing Disorder (or SPD).  Her thoughts were that the backpack was helping her feel organized and secure. 

My initial thought was of frustration at one more diagnosis.  One more thing to research.  One more thing to look at therapies for.  A feeling of deflation came over me.  Because I need to know absolutely everything I can about Sarah, I quickly Googled the term to find loads of information about SPD.  A lot of what I read appeared to be true in her case. 

The past couple weekends at church, I have kept Sarah with us rather than to her class.  I noticed that when the worship team began to play, she quickly needed to be held and would hold me quite tight with her head on my shoulder.  Another instance that I thought of, was at a birthday party that was held at an indoor type playground.  There were quite a few kids (mostly boys) who were running around and being very loud.  Nothing was wrong with that, they were just having preschool fun.  I saw that when the noise escalated, Sarah would wander to a climbing structure and either just sit on it or would just play alone.  It was as though she was retreating into herself to tune out the noise.  I also have seen that when the setting at Sunday School gets busy with a lot of kids running around and being loud, she tends to retreat and play alone.  I'm thankful that she is aware of how to deal with her over-stimulation by retreating rather than having a meltdown.

Other things I've noticed are her choices in food.  She has a very bland diet.  She eats a lot of grains, pastas, cereals and breads.  She loves apples, bananas, grapes and pears.  She also likes cheese, *pink* milk and peanut butter.  She can't eat meat, vegetables or other strong flavored foods. 

The third sense that I've noticed is ultra sensitive is her sense of touch.  She would love to wear fleece sleepers all day if I allowed.  She doesn't care for jeans or anything with a snugger waist.  I am beginning to wonder if her wanting to sleep with us is to satisfy that desire to be touched in addition to being a habit. 

Her eyes are very small and very sensitive to sunlight as well.   We are actually going to see an ophthalmologist in April for a follow up.  The last appointment 6 months ago didn't show anything of serious concern so I'm not too worried about this upcoming visit.  I think I'll have to teach her to wear sunglasses outside this summer though. 

Now, she hasn't been officially diagnosed with SPD but I can see how it could be.  I was kind of down on the weekend as I continued to process this new information and potential {new} diagnosis.  My sister came over on Tuesday and we had a wonderful visit.  She encouraged me to keep doing what I am and to try not to let this get me down.  I am the best mom for Sarah and no one will love her more than her daddy and I do.  We will love, support and advocate for her as long as we need to. 

I am continuing to work at placing all of my concerns and fears into God's hands and let Him do His will.  Some days are easier than others but I'm trying. 

I hope you have a great weekend.  Make sure you spend time with those you love and give your children a great big hug.  They are all so special and need to feel important to you!

Monday, March 12, 2012

And The Outdoors Win

Today the kids did their school work in the morning and then slipped outside just before lunch.  When they came in to eat, I encouraged them to complete what they were asked to so they could go back out to play.  The sunshine was calling their names as it streamed in the windows over their math books.  Despite the calling of the fresh air, they did persevere and finished up very quickly.  I don't expect I'll see much of them again for a few hours!  They are building a fort with some wood that was laying around the garage.  I'm not totally sure what the finished product will look like.  Andrea has embraced the take-charge foreman position while Joshua and Arianna are her faithful sidekicks. 

Sarah is just puttering around with her tiny dolls and dancing in the dust *bubbles* that seem to be over abundant these days. 

I'm thinking I'll grab a few minutes with a coffee and enjoy the quiet that I am surrounded by.

Saturday, March 3, 2012

Seven on Saturday


We don't like to be disappointed.  In the ideal world, we simply have everything go smoothly without any bumps in the road.  We are pushing our big US trip up to June.  Although the delay is a bit of a bummer, after hearing about the crazy tornado storms occurring in the south, I'm beginning to wonder if it is for the better that we wait until a few more months.  The tornado season will be over and the weather as a whole will be much warmer.  I'm convinced that's a good thing!

We are all {slowly} getting used to not having a little dog underfoot.  Even though I am positive it was the right move for Sadie, I still miss some things about her.  For one, the floor is much more crumby.  Sadie was picky about what she ate off the floor but I now notice how much she actually DID eat.  I don't miss the accidents but I do miss the fuzz-therapy {as Doug called it}.  We received a sympathy card in the mail this week and it was nice to know that the vet cared enough about us and the hard decision we made to do just that little act of kindness.  

Sarah has begun the stage of nightmares and night terrors.  Last night at about 1:00 in the morning (she was in bed with us), she woke up with a piercing scream.  Nothing like being jolted out of a deep sleep to the shrieks of your little girl and no way to settle her down.  It took a few minutes of crying off and on before she settled back into a deep sleep for the rest of the night.  Poor little girl of mine.

The kids and I are really enjoying something called Amish Friendship Bread.  You can read about it here if you'd like.  It begins with a Ziplock bag of a creamy mixture called *starter*.  For the next 10 days, this starter is mixed in the bag and has new ingredients added to it on days 5 & 10.  On day 10, the big bowl of batter is divided back into three new bags and the remaining batter becomes this delicious cinnamon loaf.  The idea is to give two of the bags to friends and use the 3rd bag to begin your own 10 day cycle again.  I've seen many variations for the final recipe and I keep tweaking it to make it just a little better. 

After a crazy mild winter, we received a huge dump of snow.  The week before we were in runners and light jackets, now we are back to boots and heavy coats.  Go figure.  I was really hoping the snow would stay away but it wasn't meant to be that way.  Wishful thinking I know... it's Alberta right?

I miss my craft room.  Yes, it's still there, full of paper, stamps, inks, embellishments and anything I need.  I just feel like my creative spirit is lacking and I don't know how to retrieve it.  Maybe I just need a day to spend time in it and then the creative mind set will return.  Perhaps that will be tomorrow's activity...

I'm glad it's the weekend.  The kids get to be with their friends, Doug and I spend most of the days together and there is just a sense of reconnecting after a long and busy week.  



Related Posts with Thumbnails