Our Adoption Journey!

A journal of our thoughts, feelings and steps in the process of adopting a child with significant special needs.

Wednesday, August 24, 2011

What is the value of "Experience" to a disabled child?

I have been thinking alot about this topic. It is not that I want to "re-live" or do over those early days, months, years with Ethan, but I do wonder what things would have been like if we would have gone into special needs parenting with the knowlege and experience we have now, because of what we have been through. I truly think Chloe's outcome is better than it would have been because of our experience with Ethan....infact I will give credit to the experience that she is even alive today! It was because of all we had been through with Ethan and our CPR and First Aid training that saved Chloe's life when she stopped breathing at two weeks old on the way home from the doctor with a diagnosis of RSV....CPR and mom's instinct that something was wrong and I needed to pull over. I found her, nose and lips starting to turn blue, and very limp and not making any attempt to breath. In a moment like that you are beyond panic and when you have already learned what to do you go into auto pilot. I wonder now how my head was so clear in that moment I should have been in complete panic. My head was so in the moment of what needed to be done that I was able to identify that I was only 2 blocks from the hospital, that I was able to get her breathing and get her to the ER. I think that it was the fact that I was not panicing that led the ER nurses to believe that the situation was not so critical that they had me go and sit in the waiting room, where I continued to keep my newborn preemie breathing while I patiently waited....infact it was another adult waiting to be seen in the ER that became alarmed and alerted the nurses that they needed to get out there and do something for this mom who is trying to keep her baby alive. Even when we got back in the room and a nurse was bagging my daughter I was asked to help by stimulating Chloe so she would not get too comfortable and try to go to sleep as we waited several hours for Air Evac to be available to come and intubate my baby and transport her to a hospital with ECMO in their pedeatric ICU. If I had not been through what I had already experienced with Ethan, Chloe may never have survived that day. Then when she struggled with torticollis and plageocephaly and I was trying to get her the therapy and treatment she needed to correct these issues it was what I already knew about navigating DDD and early intervention that got Chloe treated so quickly, and my knowlege and confidence in providing Chloe with a "home program" where I do PT with her daily because the therapist only comes once a week that also resulted in her recovery. I think that if I had not known what I did she would very likely still have a misshappen skull and a significant head tilt. If I had only known when Ethan was small that these agencies and programs have a responsibility and requirement to fulfil what is on your childs IEP/IFSP would Ethan's condition now be different because he would have not had to wait so long for certain services because I was patient with case workers and didn't know that they were required to fulfil these obligations and I could file a greivance and services would likely have begun many months before they did. They don't tell you these things when you are new to it....you learn them along the way and have access to wonderful and open therapists and service providers. They don't tell you because they want to get away with doing as little as possible for as long as possible, and you as a parent are the ONLY one with the best interest of your child at heart. It is because of this I KNOW the value experience holds for a disabled child, and it is because of this that any child we adopt would bennefit from this....I had to become that "pain in the butt" mom who doesn't stop calling until she gets what her child is entitled to and not next month, but NOW, the one that won't give up until they are doing their job. This quility is SO IMPORTANT to a child with medical needs that go beyond the average child. I think it is this experience that alway earns me the question with new medical/therapy providers, teachers ect. "are you in the medical field?"....the answer is always, "No, I am just the mom of a special needs child, who has been through quite a lot, so I have had to learn all the terms, procedures, etc." Experience to a child with special needs IS priceless.