Aiden update

Things have been really good since the move to Texas - Aiden loves school, he is getting ready to celebrate his 3rd birthday and his development continues to be on track. Before the move I contacted the program director in Texas for the Early Childhood Intervention to get services arranged without delay once we got settled. We continued with speech therapy once/week and developmental therapy twice/month with great results.

As his birthday approaches and the ECI program services prepare to end, we scheduled his IEP evaluation to determine if/what services Aiden would need to receive going forward. The eval took place in a preschool room with books, toys, art supplies, etc. with an "Educational Team Lead", occupational therapist and speech therapist present. Basically they observed Aiden as he played and asked him to complete specific tasks that would demonstrate his abilities related to some of the areas of concern (fine motor skills, language comprehension). He was a bit stubborn throughout - but overall I'd say he nailed it :)

At the conclusion of the meeting, the team convened and discussed with me their impressions. It was decided that despite Aiden's "diagnosis", they felt that he either met or exceeded the developmental criteria for his age-group. Can we get an AMEN?!?!? What a huge success for Aiden - and a huge relief for us.

We have worked really hard to push for the right early intervention services, and have attempted to implement what he's learned in those sessions throughout Aiden's everyday routines. I think his success is also a testament of the relationship he has with his big brother. Even when Ricky and I are too tired to "teach", Aiden always has a lot to learn from Ethan, and Ethan is always willing to take on that role. During one of our first visits to Dr. Fearon, the craniofacial specialist, I remember asking what was in store for Aiden intellectually, and he told us that every child with Apert Syndrome is different - typically they range from mild developmental delays to normal intellectual abilities - but sometimes there are instances where mild to moderate mental retardation is possible (usually from the lack of medical intervention to prevent such from happening). We were heartbroken and yet positive at the same time, asking "Do you think it will benefit Aiden that he has a big brother so close in age?" Dr. Fearon was vague in his response - it may or may not help. We didn't plan to have them so close together, but I think God knew that Ethan would embrace his role as a super-sib when He decided to give us Aiden, which is why things worked out the way they did.

So we will continue to incorporate learning opportunities into Aiden's everyday "playtime" and encourage the relationship and bond that the boys have developed. Aiden will need to have a 2nd set of tubes placed in May, along with a corrective hand surgery scheduled at the same time to straighten his right index finger (it is curved at a 90 degree angle due to the severity of the fusion prior to the intital separation) and to fix a re-growth of one of the skin grafts between the same index finger and middle finger. We will keep both boys in preschool until just before we leave for Dallas. Then our plan is to head back to KY/IN for a few weeks of family visits and the CCA retreat. Once we return, we may have Aiden evaluated to make sure he is continuing to excel without therapies. And at that time we will decide if we want to schedule him with private therapists to improve certain skills. In addition, IEP evaluations will occur once/year to determine his eligiblity for services within the school system as he gets older. While we are excited that he is doing so well right now, we understand that he will most likely require additional intervention once he enters elementary school to address things that he may have trouble with like writing, typing, speech articulation, etc..

But for now - we will enjoy some downtime :) And we will continue to be amazed by the blessing in our family that is Aiden!

1 comment :

  1. What a great testament to family, Aiden is blessed to have you all, and you are all blessed by him.