For those of view who might not be familiar with Tenley's history, here is the overview:
She was born in bad shape. She passed and inhaled a complete bowel movement en utero, completely preventing her lungs from functioning outside the womb. Even when on a ventilator, the gunk blocked the oxygen from being absorbed into her bloodstream. Everything system in your body relies in oxygen being delivered through your bloodstream, so this was a huge problem to say the least. She was placed on a machine called ECMO that takes the blood from the body, oxygenates it and returns it, thus taking over the work of the lungs. She made a miraculous recovery against the odds and for all intents and purposes is now "fine", especially considering the things that could have and should have happened.
However, for an extended period of time she was on serious drugs that paralyze your body and heavy narcotic and non narcotic sedatives, including methadone just to name one. Those take a long long time to completely leave a baby's system. I mean a LONG time. In addition to that, they used her right common carotid artery while she was on that machine. Once she was taken off that machine, they cut off that artery because it was too damaged. Since she was a baby and the body has amazing means to compensate and survive, she developed addition veins to help supplement the blood flow. Kids live after this is done, and it saved her life. However, no one knows the long term effect that this artery ligation has with these kids over a lifetime. There have been so few who have had it done, and the oldest people to have had this done as babies aren't even my age yet. No one has studied it in depth. The only thing I've found on it is that these kids have higher instances of learning disabilities and developmental delays and/or developmental and social disorders.
Tenley has always been behind in large and fine motor development so I just go with the flow on that one, but when she was one and a half I noticed a few things that I felt were more different than just "Tenley different". We all know she has a personality all her own, but my Mom instincts were telling me it might be more. I took her to her pediatrician who said at that age she is too little for her to be accurately evaluated for things like that. She said I might just be overly worried and to wait and see. Well, toward the end of my pregnancy with Scarlett I really started to worry about Tenley. She and I were two of a kind, she was my little buddy all day long. I really worried about her adjusting to life with a sibling. So we looked into an early preschool type thing to start her in before the baby came so that she might have something all her own to look forward to. I was really impressed with the Children's Learning Adventure on river and la cholla. It was expensive but they're training is so consistent and they have a huge emphasis on positive discipline and gentleness. Tenley still had a REALLY hard time. She liked playing with the kids and had alot of fun, but she definitely was not adjusting. We switched to five days a week for just a short time every day hoping that maybe if it were a routine, she would have an easier time. Even after a considerable length of time she continued to struggle, but they encouraged me to keep bringing her because some kids who've never been in child care or with a sitter have a hard time staying without family for a while. After about four months the director called a meeting with us. She was so sweet with Tenley, she would come get her from class if she was sad and walk her around and snuggle her, she really cared about Tenley. She explained that she was in no way asking Tenley to leave, but that she was really concerned about her. She was tentative about approaching the subject of Autism and we could tell she didn't want to over step her bounds. She said she's not a doctor, but that they see a lot of kids from babyhood on through kindergarten, and that a lot of the behaviors Tenley was exhibiting were the same as some of the kids there who have been diagnosed with an Autism were exhibiting at Tenley's age. So that's what got us to where we are now.
Last week a developmental specialist and a speech therapist came from the Blake Easter Seals Foundation under AzEIP (Arizona Early Intervention Program) to evaluate her for developmental and social problems. They DO NOT diagnose autism. They observe and assess the same developmental problems and provide help for guiding children with such problems, but they do not diagnose. I can take their official report to a developmental pediatrician and then that doctor will say she does or does not have Autism.
I haven't received their official report yet, I was supposed to by Friday. Which makes me think we need a bigger specialist, because they told us at the end once they reviewed everything we might need to be contacted by someone else. They can't speculate on whether or not Tenley is Autistic, but several times they did say things like, "That type of behavior is common among Autistic children". We identified a lot of Tenley's problems that day, which was both helpful and painful for me. No one ever likes to hear that their child has things that will make their life difficult, even if you had suspected so already.
One of the things they noticed in playing with Tenley is that she has a hard time grasping any concept involving relativity, and conversely she has a superior memory for concrete and definite things. For example, she doesn't understand time. At all. Which to some degree is normal, but with Tenley she can't even comprehend the ideas before, after, next, etc on any level. She has her numbers memorized almost up to 20 in sequence, but the only VALUE she understands is the number one. If she is told to count objects or to give you a certain number of objects, she will hand you some and then count them over and over again. If she hands you three blocks and you ask how many, she will point to them and count, 1-2-3 (start over) 4-5-6 and so on until she feels like she's done. If you say "How many was that?" She'll say "ummm" and then make up a few numbers.
They noticed that she has a problem with two step directions. If the directions involve things she is used to doing in that order then she can, put if you put two random directions together like "Pick up that ball, and then touch your nose" she will only remember one direction or not even try.
She can't fall asleep on her own. Not won't, can't. That was a huge flag for them. Sleep has to happen to her, even if given a melatonin supplement.
We talked about how and also together observed that she has a hard time transitioning activities if Mom or Dad or Grandma etc isn't there. She will if a usual family member is there, but if she is with someone else its almost like she copes by completely shutting out everything but whatever activity she is doing, and then if you try to get her to move on to something else she comes unglued.
She is frequently inconsolable. Sometimes she will just get mad that Daddy is at work and scream and bang at the door. She won't even let me pick her up or cuddle her. One time our next door neighbor thought I was unconscious because she had heard Tenley screaming for so long.
We talked about some problems at preschool. When Tenley was in preschool she hurt herself a lot when she was mad.
Her language and communication skills are somewhat lopsided. Tenley has an incredible vocabulary that is very advanced for her age. Her ability to structure a sentence is delayed, but she knows way more words than a kid her age should. She will babble and slur when she is upset and repeat herself, despite her vocab.
She has an imaginary friend. I wasn't sure about that one so I asked the lady, the lady talked to Tenley about "Coco" and she is pretty sure its an imaginary friend. Which apparently is common in intelligent children with coping problems.
She also has a pretty photographic memory. She can memorize dialogue from a book or movie almost word for word the very first time she sees it.
Anyhow, I have no idea what all of this means. I just know that these were some of the little "red flags" they observed. We'll know more when we get their report.
Thank you SO much to everyone who has shown there support and love and given their sincerest prayers since Tenley came into this world on such uncertain terms. We appreciate it so much and feel so blessed.
Jacque Williams
