As part of Kaitlyn’s initial Asperger’s diagnosis, the report we received noted that we would have to take her in for periodic follow-ups to determine if anything new had come up and what, if any, additional treatments would be necessary. Like our initial visit, the follow-up consisted of two visits, one in November, and one in January (where we were told about our animal identities). Yesterday, close to two years to the day we received the initial results, we received the results from our follow-ups.
To be quick and to the point, we received further confirmation of Kaitlyn’s initial diagnosis. Asperger’s disorder. Reading those words last night did not serve as the kick in the gut that they did two years ago.
Of course, just because we received confirmation about what we already knew, the report was still not easy to read. We are talking about an in-depth analysis of our little girl, and, at least tangentially, an analysis of Amber and I as parents.
On pretty much all of the tests that were administered this time that were administered last time, Kaitlyn scored almost the same both times. There was some variance in the scores, but not anything significant.
The test where we saw the most consistency was the Pervasive Developmental Disorder Behavior Inventory (PDDBI), which is a lengthy questionnaire that we completed, and that Kaitlyn’s teacher completed. Not surprisingly, our results were well within the standard deviation of 10 from last time to this time, meaning that what we saw then is basically what we see now. There was some variation, however, in the scores from last time and this time in the teacher area, but that can be attributed to the fact that it was two different teachers completing the questionnaire; different teachers are bound to have different observations and opinions.
Some highlights of the report include the following recommendations (these are presented verbatim from the report):
*It is important that a consistent behavior plan be implemented across environments in order to lessen the anxiety level of the child in regard to changes in routine and be given the opportunity to engage in the most appropriate behavior.
*Delayed social relatedness, social aversion, disinterested social interaction, and poor social abilities were noted. The ability to interpret the intents of actions of others is required to function adequately in most social contexts. Numerous deficits were found in this area and therapy and instruction in addressing this is recommended.
*The family is encouraged to continue educating themselves and others about autism related disorder.
Amber and I have always been proud of the fact that we do our very best to keep behavioral expectations consistent with Kaitlyn all the time. She is the most at ease when she has the comfort of knowing exactly what is expected of her at all times. We do have our concerns about her social skills, and do sometimes try to put her into social situations that may make her a little uncomfortable so that we can help her adjust, at least somewhat; we want to be able to at least help her develop ways to manage her anxiety in social situations. And, because it has been professionally recommended, this blog will continue (because I know it is very educational!).
We talked at length last night about what this new report means. To us, it serves as a way to help us remember how fortunate we are to have our own “cheerleaders” in our lives to support us. While it would certainly lessen our stress level to have family closer, we will continue to rely on what we have in place; we are fortunate that we have close friends who we can lean on, but we also know that we can only expect so much from them. Amber and I have seen how Kaitlyn has grown because of the friends we have made, and we have also seen how she has so much more growing to do. Yes, sometimes Amber and I do lament the fact that we are flying solo due to the distance we are from any family, we quickly snap out of it and re-focus on doing what we know is right for Kaitlyn, and that means deepening our roots where we are.
For the sake of space, I left out some of what was contained in the report. A brief summary would look like this: Kaitlyn’s needs will continue to grow, and her parents need to continue to maintain what they are doing. As the years go by, other factors will start to come into play that will only serve to increase the stress on Kaitlyn’s parents, and they will only worry more about her as time goes on. Amber and I know full-well what challenges lie ahead for us, and we are ready to tackle them head-on. We are determined to make sure that Kaitlyn is taken care of. We know that there will be times when we are stressed out beyond what we thought was possible, but will succeed because we have each other to lean on. Kaitlyn will succeed because she has us to lean on, and she will only continue to learn that there is nothing we won’t do for her. Not only did the report we received yesterday further confirm what we already knew, it deepened our resolve in advocating for Kaitlyn and for being a source of strength for her.