As parents we knew something was "not right" with Addison. In the last 4 years, she has seen doctors and been tested via ultrasounds, MRIs, and blood tests. But nothing in this world could have prepared us for what we heard yesterday during her evaluation for Autism. We (or I ) did expect for Addison to have autism. But to learn that she is developmentally delayed of 75% of her age with intellectual disorder and severe speech delay disorder was very hard to swallow.
The evaluation was from 9 am until 4 pm. The doctor conducted a variety of tests. She first had Addison to put cubes in a cup. There were 9 red cubes in front of her. She mostly picked two up and banged them together. Then the doctor moved along with other toys such as wood puzzles with shapes to have Addison to put them in the correct place, hide a bracelet under two washcloths and she had look for it, put a bell in a clear box and she would have to retrieve it. Unfortunately, Addison had to be prompted a lot to get her to complete the task or she would not complete it at all. Then she moved to toys we all knew Addison would like, a jack in the box, a mechanical rabbit that had a foot pedal, a rubber duck that spit out bubbles. Once she figured out how to work it, she was on it. But took a lot of time for her to figure it out. They also did a pretend birthday party for a baby doll. The doctor pulled out Playdough, smushed it into a cake, put sticks in the cake for candles, and sang the Birthday song. I tired to get her to "pretend" blow out the candles. But she didn't get it. And she was more interested in playing with the dolls eyes since they moved.
Once that was over, we got a one hour lunch break and came back around 1. The last part of the evaluation was mainly questionnaire of what Addison does at home. Sleep pattern, eating, social interaction, how she got a long with Hunter. When that was over, they tallied up the scores and came back and went over her strengths to help her in therapy. She is very eager to learn and loves to have the physical play. Then came down to the diagnosis.
The analogy they used was if a car is going 100 miles and you are going 32 miles, do you think you're going to catch up. Well with Addison's development delay, there is a significant gap with her delay. We were told it's all genetic and that the doctor wants to do a Genome test. The state of Arkansas is trying to adopt this test, however; it is too expensive. When the state can get it cheap enough for Medicaid to cover it, then we can have this test done. Basically, this test will find chromosomes known to be issues that are not trained the eye. They think this is a rare syndrome with no name to it.
Where do we go from here??
1.) We are applying for Autism waiver. If we are accepted into this program, Addison will get an additional 20 hours a week of therapy time and will be done at home on top of what she's getting at her school. The problem is that it's so new to the state, has a waiting list, and just opened 50 slots. We are currently waiting for Addison's pediatrician to sign in agreement with her diagnosis and the actual report from the evaluation. This part could take up to 3 weeks to get this report.
2.) Addison will continue where she is at receiving her physical therapy, occupational therapy, feeding/speech therapy, and her classroom therapy. We have decided with Addison approaching 5 in 8 months, we will let Addison continue with her current school for another year to get more therapy.
3.) Because our almost 3 year old son is mimicking our daughter's speech delay, we are getting him evaluated and set up at a different speech program. But he can't get evaluated until he is 3. Which this is only a month a way. If they accept him, I will have more free time to sit in on Addison's therapy sessions as well.
4.) We are going to start a communication notebook for Addison's school so her dad and I will know what goals they are doing with her on. And I will write in it saying what she is doing at home as well.
All in all. We have a very long road ahead. Not going to be an easy one. It's going to take lots of therapy, love, changes, and support to hopefully get her independent.
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