Monday, January 30, 2012

Pearly

We have developed an adjective in our household to describe our daughter and it is "pearly".  Her name is Kadence Pearl. Most know her as Kadie or Kadie Pearl but those closest to her know her as Pearly - or just Pearl.

This little girl is the sweetest thing ever. She giggles, dances, chatters non stop, changes clothing about 20 times a day, works puzzles incessantly, breast feeds her big booty baby and helps me do my housework. She loves Power Rangers, princesses, babies, her "bunny house" and snacking all day long. She is whimsical, pink, huggy, sweaty, and really cute. She wears skirts or dresses all of the time and insists on dressing herself, and therefore usually doesn't match. She wants to do everything all by herself. If you do something for her, she will undo it and do it again - her way. She is stubborn, funny, mischievous and grouchy - especially if she is hot. She is very sensitive and wears her little heart on her sleeve. She is always thirsty and loves chocolate and taking swigs of my coffee when I'm not looking. She is very girly and the perfect touch of femininity to our otherwise, testosterone filled home.



She is just pearly in all of her precious pearliness. She is a precious pearly princess and I love her. I love every second of her. She is such a joy and I'm so thankful for her sweet little spirit. I will always be thankful for my precious daughter. God is so good.



Wednesday, January 25, 2012

My son, the Aspie

A few weeks ago, my world came crashing down. We were told some not so surprising news. Our son, Harrison, was diagnosed with mild Aspergers, Oppositional Defiance Disorder, and Sensory Integration Disorder. Again, it wasn't a surprise. I've known since before he was two, that he was different than most kids. He has always been challenging and quirky.
And nearly three weeks later, I'm still digesting it. My initial concerns were big picture things. Like is he going to be an independent adult? Do Aspies lead "normal" adult lives? Do they go to college? Do they get married? Do they have kids?

Let me backtrack. Aspie is lingo for Aspergers and it is not a derogatory term. 

On the car ride home, after our appointment with the psychologist, Chris told me how thankful he was for me. Because of my seemingly pointless psychology degree, I was likely able to pick up on things that might have been overlooked and we were able to identify Aspergers earlier. Evidently, it is hard to diagnosis and often masks under the accompanying co-morbid conditions, like ADD, ADHD, ODD, OCD, SID, etc. Many Aspies don't get diagnosed until they are much older and early intervention is certainly helpful and more beneficial.

The thing is, he has NO problems at school. Other than being quirky and random, I don't know that it has been an issue at school, period. Most of our problems are at home and quite frankly have made us often feel like horrible parents. So in a way, it was a relief to finally have answers. And we've been dealing with this for 5 years (give or take), so it isn't new. But learning how to help him is new. Learning how to help is overwhelming. He is going to need occupational therapy and we are going to try some play based therapy. Medications are an option, but not an option we are considering at this point. We can involve school and get an IEP, but that doesn't seem necessary at this point, so we are still praying for direction. And then, both of us feel like homeschooling might be a better option for him - so that is a major prayer focus as well.

There is no cure for Aspergers. This is not something he will outgrow or overcome. He will have this for his entire lifetime. Our goal is to give him tools to lead a successful life and use these Aspie traits to glorify God.

For those not familiar, Aspergers is a pervasive development disorder (which has evidently been redefined as of last week). It causes problems in his development - socialization, communication, behavior, thinking and activities. Aspies generally don't have delays in language, cognitive development or self-help skills.

Here are the major symptoms we see with Harrison:
• Often prefers to be by himself
• Unaware of how his behavior and/or comments affect others
• Seems uninterested in activities that involve competition
• Socially inappropriate responses
• Makes limited eye contact
• Impressive long-term memory for facts
• Seems almost obsessed with a particular topic
• Expects others to understand what he thinks without telling them
• Does not ask for clarification when confused
• Cannot imagine what others are thinking
• Cannot interpret other’s intentions
• Extreme reactions to minor upsets
• Feelings are all-or-none
• Cannot read emotions of people’s faces
• Fanatical about his interest
• Seems obsessed with interest
• Talks incessantly about his interest
• Little interest in other topics
• Pursues advanced knowledge about his interest
• Shows off knowledge in almost encyclopedic manner
• Often prefers to play by himself rather than with peers
• Uses playmates as objects
• Intense reaction if play does not go his way
• Controlling of playmates
• Difficulty sharing toys
• Interprets things literally
• Has an unusual tone of voice
• Talks in an overly precise manner
• Uses advanced vocabulary
• Poor coordination
• Poor ball play
• Odd gait when walking or running
• Overly reactive to sounds
• Overly reactive to fabrics
• Resistant to food textures

Ashley, Susan (2006-10-01). Asperger's Answer Book: Professional Answers to 300 of the Top Questions Parents Ask (p. 3). Sourcebooks. Kindle Edition.

Now, that isn't to say all of those manifestations are severe, but they have all been evident at some point in time and some more than others.

So here is the thing. Nothing changes, except everything changes. He is still the same wonderful little boy that I love so fiercely it hurts. He is brilliant, fun, moody, quirky, funny, unique, and fantastic. NONE of those things change. All of the things we have struggled with for so many years now make so much more sense. And from what I understand about Aspergers, the social aspect gets harder as they mature.



As his mother, I just wish I could take the bad parts away from him. I don't want him to hurt. He has really felt his differences this year and he has definitely embraced them but sometimes it makes him really sad. It breaks my  heart to see him sad. I want to protect him from the people that may not understand him. I want to protect him from the people that may not give him a chance because he is different than them. I want the world to see know what a wonderful little boy he is and how much he has to offer. I am definitely reassured when I research famous Aspies or people who where thought to have had it. Definitely some influential people in our history.

I am also reminded of one of my most spiritual moments. Early during my pregnancy, when we thought were were miscarrying him, I remember praying to God that Harrison would continue to grow inside of me. Begging with Him. Pleading with Him. I remember this incredible feeling of peace that came over and me and felt God telling me that this baby would do great things for Him. And I am constantly reading one of my favorite scriptures.

Psalm 139:13-14,  (A psalm of David) ” 13 You made all the delicate, inner parts of my body and knit me together in my mother’s womb. 14 Thank you for making me so wonderfully complex! Your workmanship is marvelous—how well I know it.

God made Harrison perfectly. He did not make a mistake. He created Harrison just as He wanted him. God made my precious boy as he is.

There are so many things that have been going on within my emotions over the past few weeks and I have really wanted to write about it, but I've been in somewhat of denial. I'm starting to embrace it so that we can move forward. But I ask that you pray for us in many specific ways. Pray that we can be the kind of parents that Harrison needs. Pray that we can be the kind of parents Kadie and Sam need as well. Pray that we can help Harrison work through some of his major struggles and use his gifts to glorify God. Pray for our family as we begin the process of therapy and learning to live our lives as a family with an Aspie child. Pray that financial restraints won't keep us from being able to give us the treatment Harrison needs. Pray for our patience. Pray for our strength. Pray for the decisions we need to make. Pray for our marriage and that it stays strong. Pray for our faith and that it is strengthened.