I struggle sometimes to balance my want to live in denial with my NEED to keep a positive but realistic outlook. I want to ignore to vehementantly deny the possibility that my son might have delays and special needs for the rest of his life. But, I can tell you one thing that I have learned in the past 6 months...having a special needs child radically changes YOUR life....even if his "specialness" is just possibly temporary. These radical changes permeate more than the big picture aspect of your life. Even the mundane day-to-day living has become completely different.
Almost everything I do with Nolen is calculated, from how I try and pick him up by coaching him from laying on his back onto his side, then to sitting as opposed to just grabbing under the arms and going to how I carry him differently then I carried my girls, trying to keep the pressure on his hips and not under his butt (so that he is encouraged to lengthen his body and not curl up). I try to make every moment and every interaction with him an attempt to instruct him, strengthen him, and encourage him.
I push my son. I push him more than my girls were ever pushed, I stand for hours in the toy aisle analyzing which toys encourage suplination in his forearms. (Any suggestions?) I sing ridiculously loud lullabyes over the sound of the EEG monitor being glued to his scalp and his screams. I spend hours at therapy making crazy sounds and faces and popping his binky in trying to keep him from screaming the entire session. (Again, any suggestions?) And in those session in which he just isn't having it and I would have whisked my girls up in my arm and walked away, I fight the urge and push him through it. Why? Because he needs to be pushed and my emotional need to protect him has to be ignored by HIS needs for therapy.
I live, breathe, eat and sleep his difficulties daily. I watch his progression and jump for joy when a new skill is mastered, but I am constantly aware of the other milestones he should have reached but hasn't. This is why I am so quick to recognize denial in those around me...I know and see his issues on the most intimate levels, I hold him when he has bad nights full of residual pain, I worry when he sleeps for a full day and doesn't show interest in eating, I watch and hear his frustration when his hands don't perform as he needs them too. I simultaneously beam with pride and cringe with realization when he adapts to using his wrists to move things because he can't open his hands. I spend hours on the phone with my sister adjusting his lab levels and demanding further test because 6 months later his liver and other levels SHOULD be normal, but aren't. (Any suggestions on how long post Encephalitis abnormal labs are considered acceptable?)
I get that every parent or loved one of a child requiring different needs wants to ignore them, wants to gloss over them, wants to give their child more time, begs that it's just a time thing and not a real issue to be faced head on. But what good does glossing over do for a child who *might* have real issues? None. Just like becoming overly emotional when my son was in the hospital didn't help him it only exhausted me.
Because I am his mom, I don't struggle with denial because I am faced with this one hard truth---Denial has no value other than to make me feel good.
Denial does not make a problem go away. In fact denying that your child has a problem only makes it a bigger problem because you neglect to push them and seek out assistance and therapies that can make a HUGE difference when you start early.
Denial is not the same thing as being optimistic. Optimism is choosing to hope for the favorable outcome. I hope, pray and believe that Nolen will be well, but I am very realistic about where we are, and less than comfortable with the fact that he might not be "normal". Ryan said it best, "Nolen just wants to be loved, and regardless of what happens, I am more than happy to love him"
So, help me out here (since I did just let you read my diary)...how do you balance Denial with Reality? Worry with Optimism? Do you think you can be Optimistically realistic? Am I in denial about being a Pessimist?
Sunday, February 20, 2011
Denial-What is it good for?
Posted by Brandie at 4:36 PM 2 comments
Labels: Nolen, special needs
Wednesday, February 16, 2011
That little snot!
The girls have our old iPhones because I have become *that* parent...the one I swore I would never be! I figure all you "No video games for my kids parents" can talk to me after multiple doctors and physical therapy appointments in one day...and then judge my decison. But be forewarned...this is one of my best parenting concessions to date.
This morning...Kaelyn, in all her sweetness, walked up to me holding her phone, "Mom check this out" and holds up the phone to show me the pictures she took.
I feigned interest, expecting yet another montage of random blurry shots. She could tell and decided to narrate with a very proud grin.
"These are the towels on the floor," she succeded in getting my full attention as I saw the blurry shape of white which could only be the pile of towels waiting to be washed,"and this is a picture of my blanket on the floor, and these are the toys on the floor, and this is a picture of the dishes in the sink. This house is a mess! See all these things"
*she keeps flipping photo after photo*
As I mentally thanked her for the digital "to-do" list, I looked up and said "Well, now you know what needs to be done".
Posted by Brandie at 7:00 PM 2 comments
Friday, February 11, 2011
Preschool review: Hearts and more Basics!
So this week has been pretty awesome as far as homeschooling goes.
Kaelyn continues to progress with Reading and she enjoys her new reading corner (I'll put up pictures later), Anna has started signing her alphabet although she really doesn't like to actively do anything yet.
Kaelyn worked on cutting...so she made this cool fence.
Then we sorted colors, counted and graphed the results. We "predicted" which color would have the most hearts, which would have the least and the "evaluated" the results.
We made "heart snowflakes"!!! And decorated them.
And we also talked about recycling. We turned toilet paper rolls into heart garland and took the broken crayons and made them into heart shaped multi colored crayons for our friends.
The girls painted them, and I cut and poked holes. Then the girls threaded the ribbon through! |
Posted by Brandie at 8:12 AM 1 comments
Labels: preschool corner
Friday, February 4, 2011
Preschool Corner- Getting back to basics
See the colored picture in the middle??? Kaelyn colored it! |
ANNA!!! 3 in August
I just started really working with Anna on learning some of the basics that she refuses to learn "naturally". It was around this time that I started actively working on Kaelyn's attention span and teaching her to sit and learn for longer periods of time. Anna struggles with colors so we have been doing a lot of sorting, coloring and labeling in our everyday environments. Shapes are coming along easily, and we have a fun game that we play. In addition to I spy (numbers for Kaelyn Colors for Anna), I give Anna a hand drawn list of shapes and ask her to "call out a shape" to Kaelyn. She points and says the name of a shape and Kaelyn is suppose to try and find it. Obviously I might have to help find the less common shapes (heart shaped lettuce anyone?). Anna has taken to signing her alphabet with me which makes me very happy!
NOLEN:
We have been working on rolling over and Nolen is a rollin'! We are also working on opening and closing his hands by using puffs to encourage him to open, grasp, release. He can't get the puffs in his hand but it does encourage him to move his hands with purpose towards a small item, which is difficult. Anna loves "helping aka eating" Nolen's snacks during this exercise, but at least she is sharing!
Here are some great weekly recaps at Preschool Corner!
Posted by Brandie at 4:58 AM 3 comments
Labels: Homeschool, preschool corner