Wednesday, September 10, 2014

Special Needs and Labels

Many people have asked us about Little A's medical condition or special needs.  We are not offended by this question because it is common knowledge that most children currently being adopted from China have minor to moderate medical conditions.  We have also been very open since the beginning of this process that we were adopting through our agency's Child of Promise program which meant our daughter would in fact have a special need or medical condition.

I know many of you have only "met" our precious Little A through pictures but I fully believe in the saying, "A picture is worth a thousand words."  One glance at our little one's photo and you know she is simply wonderful! However, as many of you have expressed, she does not appear to have a special need.  So the question remains, "Does Little A have a special need or medical condition?"

Daniel and I were careful about sharing information about Little A's medical condition prior to her coming home because this is part of her story and although she does have a medical condition that does and will affect her it does not define her.  We are not embarrassed or ashamed of the words special needs nor are we allowing them to have a stronghold on our daughter's life. The fierce mama bear love in me did not want someone to place a label on my daughter before they had an opportunity to meet her, to know her, to love her.  We do think it is important to share though because we want others to understand our daughter and her needs.

Our Little A has been diagnosed with cerebral palsy.  As far as we can tell it is a mild form of cerebral palsy that mainly affects her hands.  She does not let the CP slow her down and is VERY independent.  Her gait is slightly affected as is her balance but for the most part she walks quite well. As we meet with doctors and developmental specialists we hope to learn more about her diagnosis and how to best help her thrive.

Our biggest concern and hurdle right now is that Little A has a fairly significant verbal delay.  We are amazed daily at how much English she understands but she has very few words in either Chinese or English.  She is trying hard to communicate and has learned several words and signs in the short time she has been home but we have a very long road ahead of us.  We are uncertain if the verbal delay is associated to the CP or if it is a separate issue but again as we begin to meet with doctors we hope to gain a better understanding of all that is going on.

Please do not be afraid to ask us about our little one's diagnosis, needs, development, etc.  We have much to learn about CP and will be happy to share what we have learned with others.

When we received Little A's referral file there was one sentence that jumped out at us, "when you meet this little girl, you must like her" and there is no doubt about it.  She is absolutely charming and when you meet her I am pretty sure you will like her!

Wednesday, September 3, 2014

Baby Steps

Baby steps...baby steps....baby steps!  We are making baby steps!

Jet lag is still hanging around the Cooley household but I think we are beginning to see a light at the end of the tunnel and a glimpse of the new normal or at least the temporary new normal, as I am sure things will be in a constant state of flux for a little while. 

Daniel returned to work today, the girls and I were up, showered, dressed and had breakfast by 10:30am (which is an absolute miracle in itself), we had a visit from a friend, lunch and now Little A is sleeping and E is having quiet time.  Ahhhh, it feels good!

Not only are we making baby steps in our schedule and return to routine but we are making baby steps in the areas of attachment and bonding.  Little A is now allowing Daniel to hold her, bathe her, help her, etc. and we often hear "Hi, BaBa" over and over again.  However, she also uses this new found love for Ba Ba to try and control situations and ignore Mama.  Baby steps people, baby steps.

Attachment and bonding is a tricky thing.  Just when you think things are going a certain direction they change.  It is not always easy to manage and sometimes it is just plain hard but we are thankful for little glimpses of growth.  The road before us is long and there are times it will most certainly leave us feeling weary but we will just continue to take baby steps, taking one day at a time sometimes one hour or even minute at a time.

2 weeks in our arms
September 1, 2014