Monday, March 21

Sensory Processing Disorder... beginning our journey

Well, it has been so long I really don't know where to begin.  I have been almost afraid to start blogging again because there is so much to say and I find it hard to put into words.  It has been over 2 years since I was seriously blogging.  It was great and I loved it but then I began working again and I was just unable to blog and keep the family and house going. 

I'd say we have had a  few big changes in our life since I last put it all out there.  I am no longer working (woo hoo), we have a new addition to our family, Spencer.  He is 10 months old and our favorite entertainment these days.  Our other big change is that our daughter has been diagnosed with Sensory Processing Disorder (aka Sensory Integration Dysfunction).  It is the end and beginning of sorts.  It is the end of the frustration and questioning.  The wondering, "what is going on with her" or "why is she so different, other kids her age don't act this way."  These were the questions I've been asking myself for a few years.  I didn't have the guts to say them out loud - EVER.  I just quietly, secretly wondered. 

Then she began Kindergarten...

Everything changed.  We knew something was different.   It was too hard NOT to notice or talk about it.  There is so much I could say to try and explain but I think these pictures may say it all...

First day of Kindergarten
First day of 1st grade

 They sum up the two expressions she has most.  Anger/frustration and  being totally overwhelmed.

I'll go into more in the blogs to come, but for now, we know... it is a neurological disorder that she will struggle with the rest of her life.  Wow, that was hard to swallow... it still is.

She is in Occupational Therapy twice a week to begin to help her learn how to cope with how her body feels in this world around her.  To help her not feel overwhelmed in new situations;  help her put on her socks without a 30 minute battle to find the precise way to wear them so they don't drive her crazy all day.  She is OVERWHELMED by almost everything around her.  When you can't stand the feel of clothing on your body and all you can think of is taking them off, well it makes it hard to listen to the teacher.  Or if you can't stand to be lightly touched or brushed up against and a classmate accidentally brushes against you in line and you automatically react by yelling or hitting them as a defense mechanism... well, you can see where that would get you in trouble.

We are all struggling at our house to understand this.  But it is a NEW beginning.  I am reading all I can to understand what I can do to help and what will make life more tolerable for her.  I am learning to think 5 steps ahead to cut off a meltdown before it happens.  I'm trying to learn how to discipline a child who is out of control because her body doesn't feel what others feel and a child who is so easily brought to a rage that all I can do is hope she doesn't hurt herself or anyone else.

In the midst of it all, there is a smile, a glimmer of hope.  Today is a good day.  She had OT this morning and loved it.  She actually came out of school today with a smile on her face... that has not happened in a very long time.  

Everyday is a new day, I thank my God for that.  I also thank Him for all of this because he knew long before we did that this would be a struggle... a trial if you will.  

  James 1: 2 - 5
2 Consider it pure joy, my brothers and sisters,[a] whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything. 5 If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you.

I'm exhausted.

I'm overwhelmed.

I'm starting over... we are learning how to parent all over again and it is... hard. 

But we are trusting that God will get us through and give us wisdom to help guide and encourage her.

 But this is where we are.    Right Here... Right Now.

8 comments:

Deanna said...

I am so glad you are back on your blog again. I am very happy you are sharing your very special little girl's journey with all of us. God created her amazingly special and gave her an more more amazingly special Mom.

~LL~ said...

First, I am glad you are back. :-)

Second.... thank you for sharing. It is hard, I know. I think that sometimes, we Christians think there are some things we won't have to deal with.... or that we can somehow erase through prayer.

I was that way with #3 and his ear. One of my pastors, who saw us on the first day, sent his wife on the 2nd day saying, "Don't be surprised if you wake up and it is perfectly normal."

Well.... i expected it. And, admittedly, I felt a bit of disappointment when it didn't happen. Was it a question of my faith? NO! I mean.... I still entertain the absolute possibility that it will be all "gone" some morning. Or that we go through the reconstruction and then, Voila! He has had miraculous healing in his hearing.

BUT, UNTIL THEN...... I feel that I'm supposed to share my stories. I must share it all.... the fears, the joys, the financial hardships, the coping, #3's coping, the battles and the victories....

What a great witness you are to show that you STILL TRUST GOD!

God bless you, Sister!

Much love and many prayers to you and your family!

Lisa@BlessedwithGrace said...

I love you - and I SO LOVE my niece!

Sue said...

I just want you to know that you are not alone. My daughter is 30 years old with the same condition. I remember trying to put socks on her at the age of three and the difficulties it presented. She started OT at three and her therapist said that she was the most difficult child she had ever treated. She did/has made progress and I have learned to deal with many situations--not always successfully, I might add. Anyway, my prayers are with you and never ever give up!

Liz said...

Lana,
If you haven't already read it, I HIGHLY recommend "The Out of Sync Child". I got it when our oldest was little & I couldn't figure out what was going on w/ her. We discovered a few years later that she has Generalized Anxiety Disorder & OCD, but when she was younger, it looked a lot like a sensory processing issue. I have a copy here with lots of highlighted marks & notes in the margin that I'd be glad to send to you if you'd like it & haven't already read it. Email me if you're interested: Lizreeves2@aol.com

And girlfriend, if you & Lisa are anything alike (you know...aside from looks!), I know you can handle this! It is hard to swallow a diagnosis for your child, but I know firsthand that having a name for what's going on & figuring out a plan to handle it is such a relief, too!

Hang in there!

Lisa said...

Lana,
Hi! My son has mild autism and sensory processing disorder. I have several books that I can send to you if you would like. I've found that keeping a routine and a slow introduction to anything new is helpful. Please e-mail me if I can help you.

Blessings,
Lisa
zippyflowers@gmail.com

JMF said...

My 4 1/2 year old daughter was diagnosed in October with SPD. We started therapy twice a week almost immediately, and are slowly seeing little glimmers and sparks that let us know that we are on the right path. I have finally had a moment to start up my own blog (I had an old one that fell by the wayside about 2 years ago) and do some blog searches to find some encouragement and support from families who are facing the same challenges as we are (up until now, everything I've been reading is more about the disorder itself, so it's comforting to be reading something that's written from the family's perspective!).

Our OT suggested "Raising a Sensory Smart Child," which has been a fabulous resource for us. If you haven't read it yet, I recommend it!

By the way, the biblical quote that you included in your post is one that has always resonated with me. I also have a spinal cord injury and am a paraplegic - that quote really got me through some very challenging times in my life and it continues to be something that keeps me pointed in the right direction! Keep it in the forefront of your mind as you guys continue on your journey! I will definitely be following, so keep writing! And feel free to stop by my blog as well, at

http://our-perfectly-imperfect-family.blogspot.com

Good luck, and be well!

myra said...

My son has SPD, he is in grade school now, but I remember the earlier years with all its frustrations and questions. This is a dark tunnel but there is light at the end of it. Learning to handle one's surroundings and good social skills training is what I focus on with my son. We will get there one day, all of us will. Good luck. I started blogging also about my son (http://www.sensoryandmore.com). I wanted to spread awareness that some children don't act inappropriately because they're poorly brought up, but because they are trying to handle what the world is throwing at them.

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