For those of you who regularly follow my blog, you know that I have started a series called "Expectations". Sometimes expectations can be good. Sometimes they're a bit more like goals, than something unrealistic. Setting high expectations for yourself to be well, do well and act well are great. It's when you start having expectations for others or how the world "should" be, that things can go quite awry. For those of us who ended up with a child with special needs, we hold a common thread of having our expectations derailed...and it's still surprising. Even though you think that "anything could happen", when it does, it makes you realize that you never really believed it would... My new friend Chris has some amazing thoughts and I'm honored to have her share her story. She blogs at a CRAZY kind of FAITH, so you can check out more of her story there. Without further ado, Chris' thoughts on "Expectations"...
When Jen asked if I’d write something on the topic of “Expectations” I thought it would be a breeze! NOT! What I am probably realizing (I should not say probably) is that we have had a MULTITUDE of expectations gone awry……hence, the re-envisioning of expectations has been ongoing in our home.
Our first expectation was to get pregnant. My hubby and I married a little later in life (ahem….that is, if you consider my age of 36 late!) We tried and tried the “old fashioned” way and at first it was fun. It was fun until we finally realized that it wasn’t happening. Parenthood wasn’t happening…the natural way. We investigated and tried some assistive reproductive methods, spending quite a bit of money in the process. Several years passed, I was nearing my 40th birthday, and my hubby and I started looking at the realization that if I were to actually conceive at my age, there would be a significant chance of having a child with a disability of some type. We began to weigh the risks of continuing to play the game of “reproduction roulette” as opposed to those of adopting, and decided to adopt.
Let me digress here….only to say that our family-building journey was a process of weighing “calculated risks” while understanding our financial reality (eg. With a domestic adoption, we could run the risk of birth-mom changing her mind; Guatemala adoptions were becoming sketchy and were also expensive. Vietnam was looking to close their adoption program. Children from Eastern Europe frequently have been exposed to alcohol in-utero and hence, may have Fetal Alcohol Syndrome, etc.) With these things in mind, we felt that China had the most predictable adoption program at the time, and decided to pursue that route.
In adoption language, there is a term called paperwork pregnancy. The “gestation process” for our daughter was 18 months from start to finish (we brought her home from China in July of ’07 at the age of 26 months), and 12 months for our son (we welcomed him into our family in February of ’09 at the age of 28 months). In our home-study we stated that we were prepared to accept the referral of a child with the minor special need of cleft lip / palate. We are lucky to have very good medical insurance and felt that we could handle a regimen of corrective surgeries, orthodontics, and speech therapy if the right child came along…and she did! Despite her significant bilateral (two sided) cleft lip and palate, our daughter has been the epitome of the perfect patient and is a star speech student. In fact, she was the little ambassador which led us to accept another referral for a toddler with a cleft lip and palate…our son Kai.
While we were fully prepared to work through the special need we had “chosen” to accept, we did not really prepare for the fact that additional, more significant special needs might ensue. When we received word that my son was failing to thrive at his orphanage, the apprehension started creeping in. Medical reports from China indicated that there were some significant problems, but the reports were all very vague. Against the advice from many people, we chose not to “terminate” our adoption process, understanding that there were many unknowns about our son’s status. We were quite certain that our son would not survive if we didn’t ensure that he receive medical care while in China (which was only possible because we accepted his referral and our adoption paperwork was “in process” with the China Center for Adoptive Affairs.) . We got word of his improved condition four months before we traveled to China to finalize our adoption, which happened in February of ’09.
All moms of children with special needs will tell you that NOTHING is predictable. I think that we all try as hard as we can to circumvent the heartbreak and the tears of knowing that our children will struggle (and so will we). As an adoptive parent, somehow I felt that by CHOOSING the children we were adopting we would somehow avoid most of that pain and heartbreak. Nope…… we have been so humbled. No amount of processing, calculating, etc. can prepare a person or family for whatever WILL BE. The only thing that we have to hold on to is an odd but crazy kind of faith.
And so, back to the topic of this post: EXPECTATIONS. We now know that our son has a laundry list of special needs in addition to his cleft palate (PDD-NOS [autism spectrum], static encephalopathy [brain damage], mixed expressive/receptive language disorder, psychosocial dwarfism [a growth hormone insufficiency resulting from poor early nutrition and neglect], and Cognitive Disorder NOS for starters). He also has a history of trauma which gives everything an interesting twist. For example, in Kai’s ABA (Applied Behavioral Analysis) Therapy for his autism-spectrum disorder, food / candy can be used as a strong positive reinforcer for desired behaviors. While food IS a powerful reinforcer, it is also a trigger for our son to fly into a “fight or flight” response (a rage)… largely because he had experienced profound early neglect and starvation at his orphanage. Consequently, we are learning to perfect the art of tight-rope walking in our home!
Even IF we had expected any of these issues, we certainly would not have understood the magnitude of how they would play out in our family, or the emotions they would bring up on a regular basis. We have had to fine-tune our expectations daily. The Serenity Prayer has become my daily mantra….. “Lord, help me to accept the things I cannot change, the courage to change the things I can, and the WISDOM to know the difference.” We seriously try to live one day, one moment at a time.
Let me conclude this post by sharing the progress that our son HAS made (quite contrary to our earlier expectation I may add!) . While in China…and my son was 28 months old, not walking nor assisting in our dressing him, with no spoken language and no apparent will to interact with others, I said to my husband: “I can only hope that he’ll be potty trained by the time he is a teenager!” I am happy to report that our son was daytime potty trained about one week before his fourth birthday! He is making steady progress in speech, occupational and physical therapy, and best of all, he is interacting with those around him. He smiles and engages in life. That, my friends is PROGRESS