Friday, April 3, 2015

One Week In - Details About B

We are one week in. Autism Spectrum Disorder is a such a wide umbrella. No child is the same and there is so much misconception about what autism “looks like.” People have inquired about Brody’s “signs” or “symptoms” so I thought I would try to describe some of what we are experiencing. I’ll start with his speech. Brody can identify things and say general sentences “I want milk.” “Give me some chocolate.” “Sit down right here.” but has issues with expressive speech. For example, he can look at a picture and say, “She’s crying.” but cannot tell you why she is crying. He can tell you that someone is eating but not tell you why they are eating. He may ask questions but will not be able to have a conversation with you. He does not tell you what he is feeling such as telling you he is mad or say “I love you” without being told to do so. Working on his speech is tricky because he is very smart and clever. He can memorize things well. He will memorize answers to questions and when you quiz him he will give you the “correct” response but it’s from memorization not a real answer. For example, each day I pick him up from school I will ask him questions about his day (even though I know I probably won’t get answers). I’ll ask him who he played with at school. He will answer “Played with Liam. Played with Miles, etc.” BUT more than likely you will get the same answer regardless if those kids were even with him at school that day. He also has issue with repetition. We call this his “infinite loop.” Once he is caught in his infinite loop it’s like a broken record. He will repeat the same phrase or ask the same question over and over and over. You just have to let it go until he finishes. That is just a basic explanation of some of the issues with his speech. I would love (and I do hope) to be able to have a conversations with him and to hear what’s running through that little mind.  

Brody can follow individual instruction really well when he is told to specifically do something. He has a lot of trouble following group instruction. If his teacher instructs the class to go stand on a certain shape on the rug Brody will not do it (even though all the other kids have done this) but if the teacher goes to him and explains what she needs then he will more than likely follow her instruction. Socially he does not really play or parallel play with other children. He is not disruptive with other kids but typically just “does his own thing.” Example, when he goes to the gym he will do the same activity each time, run and slide, run and slide. He will do this by himself and never ask another kid to join him but if another one does start to run beside him and does the same thing he is fine. We took him to a birthday party and all the kids were on one side of the gym while Brody was on the complete opposite BUT he was having the best time by himself, doing his own thing, and laughing at the other children. 

As I mentioned in the previous post he has several “quirky” behavioral traits. Sometimes he will lick his bottom lip until its raw, run back and forth or run and slide run and slide continuously (much more than for a toddler), and cover his ears for no reason. He has VERY good hearing. He will hear sounds that we can’t even hear until we pay close attention. He also tends to obsess about one thing or item for extended periods of time. He is obsessed with one pair of his uniform pants and when he is home he HAS to be wearing them. As soon as we get home in the evening, he must first get his black pants. If they are being washed or he can not find them, then total meltdown. Brody also hits/slaps his head repeatedly for no reason. The last trait is probably the hardest to watch because sometimes he does it so hard that I know it must hurt. 

Brody saw a Developmental Pediatrician with Vanderbilt. We were fortunate it was one of the monthly appointments where they travel to Ayers Children’s Medical Center in Jackson. This way we didn’t have to disrupt B’s schedule too much in the morning. Several people have asked if the diagnosis is 100%. Diagnosing a developmental disability can be tricky as there is no blood test.  The doctor had reports from Brody’s teacher, speech therapist and of course us. Then there were lots and lots and lots of questions and then observation of B. I suppose this is what adds to the mix of emotions because as his mom, I still have this naive hope tomorrow I will be told they were wrong. Doctors were wrong about the mini human when he was just a nugget in my belly but I know deep down it’s our reality so we move forward. What are the next steps? He will be seen by a psychologist at Vanderbilt. I received a call on Friday that there is a YEAR waiting list just to have the appointment made. So frustrating. We have a family friend that is trying to help secure us a sooner appointment but there is no certainty. Next week his speech therapy is increasing to two times a week instead of just once a week and he is being evaluated to see if occupational therapy will help. Thank you to everyone that have offered words of encouragement. From Facebook messages, texts, visits, hugs, I cannot tell you how much all of this has meant to us. When I am feeling very down, I think about all of the people “rooting” for the mini human and it rejuvenates me and inspires me to do whatever he needs and ensure that he continues to be our happy little boy.

1 comment:

  1. I enjoyed learning more about Brody. God bless xoxo