A Little Message from My Heart

I decided to write a little on how Karlee has been doing. It has been almost 4 months since her official diagnosis. We have been going to therapy for nearly 3 months. We are seeing some great changes. I think that since we are walking through this "experience", I often don't realize the improvements- especially on really rough days. And so, maybe this post is for me. I just don't want to forget where we were and how far she has come. As she got in my arms today and laid her head on my shoulder, I knew I needed to write. So here goes.
4 months ago Karlee...
...would not allow me to rock her
...if I did attempt, she would scream that I was hurting her, choking her or that I stunk!
...she was very rigid and would kick and fight, while rolling her eyes in the back of her head and glazing over- she literally separated herself from the reality.
...she only wanted her daddy
...she loved to charm strangers and extended family members and friends, often telling me how she liked them, did not like me, etc.
...she did not play. period.
...her fits would begin within 5-30 minutes of waking and would basically end at bedtime. Many days we would have a total of an hour when she was not going into a fit or having one or coming out of it.
...in the nearly two years of having her before we found out what was wrong, she never had 2 good days in a row until this past august. we thought she was sick or something.
...she would hit, scream in rages at us, kick, etc. me and Drew.
...her face muscles were tense and tight.
...there were always angry lions at our house that she talked about
...she would harm kate
...and destroy toys
...saw herself as ugly and would verbalize that
...could not differentiate between feelings and how they felt or what they "looked like"

4 Months Later, Karlee...
...asks for me to hold her
...asks for me to rock her
...asks for me to lie down with her at night
...allows me to do the above with my inititive as well
...she loves to play- games, family dollhouse, etc.
...she will look at books and loves for me to read to her
...she and kate could honestly play dress-up for HOURS
...she plays with babies, pretends she is a mommy, etc.
...basically avoids strangers and simply but lovingly greets family and friends
...she is very protective of kate- very motherly towards her, making sure she is okay and doing what is right
...she is learning to realize that what someone is doing around her may not be good and avoids it and has come straight to me to talk about it
...she hasn't destroyed toys in a while
...mommy and daddy are okay. at times prefers one over the other, but done so in a polite way
...is learning to use words and recognize feelings
...sees herself as beautiful, that she can do a "great job"
...instead of huge fits, has begun to express feelings with words- we hear often- are you going to leave me? will you be back (if i go down stairs, or to the store, etc.)
...her face has relaxed- the smiling pictures are different from a few months ago.
...does not glaze over as often. is making very good eye contact.
...when she does have tantrums or a bad day, we can reconnect- we may have to do it several times in a day, but she will allow me to comfort her, etc. most of the time
...her bad tantrums are down to an hour or so and we go days between them. when we do have bad days, there may be a couple of bad days in a row and then we have several good ones again.
...the lions come and go.


So, what have we been doing? What does our home/family look like?
*The goal is to take Karlee back to as young of an infant as we possibly could without her really realizing it. We do the same things with Kate because it can only help with her bonding as well. We stay together 24-7. Karlee and Kate do housework with me, everything is in close proximity. There are few toys out in Karlee's room. Those are treats provided by mommy and daddy. I get things out to play with and we put them back. This helps her to see that mommy and daddy are the provider of all good things and it keeps "toys" safe. I spent a month feeding them essentially every meal, making meal times fun. I spontaniously give them sweet treats (m&m's, jelly beans,etc.) for no reason. We hold and rock alot throughout the day. We do activities that encourage skin to skin contact- like the make-up I mentioned in an earlier post, massages, rubbing backs, peek-a-boo, etc. We play games such as hide and seek, dance together or chase. There are alot of consequences and choices throughout the day. We do things with feelings, making faces, practicing how to express how she feels in a respectful way. We constantly promote "family", trust, love ,etc. Some of what we do is very natural and has seemed so effortless because its simply the way we parent. Other things have been an adjustment- they feel weird, but with practice, Drew and I are getting better.
Our therapist is pleased. She says its like pouring concrete. You pour it and then have to wait and let it settle and harden. We have it poured and right now are just watching some things settle and harden. Karlee will remain out of preschool and church nursery at this time and we will continue to "open the box" little by little and see how she handles things. When we first started all of this, I thought it would be like climbing a mountain with times that our footing would slip and we would go backwards. Its more like a very active EKG machine- its up and down up and down and so easy to miss that you are still climbing up. So, for me, I needed to write this. And for anyone that might come across this blog, maybe it will be a source of encouragement.
Focus on the Family recently had a radio show about RAD- you can go to their website and click on the one that mentions Nancy Thomas. They did an exceptional job describing these children. I honestly sat and wept as I listened to it via internet.
Well thank you for allowing me to share. There is so much more that I could have written. TONS more- but I will close for now. And if you read this before the weekend, please say a little prayer for us- weekends are usually tough.