I said I would update about Peter's therapy so here goes...(grab a cup of coffee cause you might be here awhile)
Since we have moved to EGF Peter hasn't been in therapy. We gave him the summer off for a few reasons...1) We moved and had a lot on our plates, 2) We wanted him to get used to Julie's house (daycare) without a bunch of new transitions, and 3) We wanted to get used to our new jobs without having to run him back and forth.
But the time has come for him to start some therapy again. He has handled the move really well and his skill level keeps improving...However, he has a lot more anxiety than he used to have. Loud noises (trains, hair dryer, vacuum, unexpected noises of any kind) scare him. And it's not just typical kid scared, it's total panic. It is really hard to watch him when he is scared because it breaks my heart. Example: When he walks into a busy restaurant, for him it's like sitting at a heavy metal concert. We do our very best to prepare him for anything that may be loud. When things are loud or if he thinks there will be something loud he covers his ears and says "Covering my eyes"...we're still working on the difference between the two. :D Anyways, he has become afraid of water too. He didn't mind the lake this summer and he doesn't mind getting into the tub, but he can't handle having water running down his body or over his head. Once again he panics and becomes very very scared. It now takes 2 of us to bathe him. These types of sensory issues are typical of a child on the Autism Spectrum but we have noticed that it has just gotten a lot worse in the past few months. We have found a doctor based out of Northwood, ND who specializes in Sensory Integration Disorders and she may be able to help us intermittedly when we have major concerns. We won't be seeing her frequently but just enough sos he can help us get through the toughest situations.
This Spring while we had the many appointments in Rochester, the official advice given to us by the doctors at Mayo was for Peter to have 6-12 months of ABA therapy
(25-40 hours per week). Here is a quick definition I found on the web for all of you that may not be familiar with ABA:
ABA (Applied Behavior Analysis) is a teaching approach that is the most effective approach known in working with children with autism, and is based on a science of behavior that provides a basis for everything the behavior analyst does.
In the case of a child with autism, ABA is a powerful teaching method that will lead to increased socially aceptable behaviors such as eye contact, verbal skills, appropriate social interaction, as well as academically based behaviors such as reading, writing, coloring, and math calculation. It also can be used to teach behaviors that replace undesirable behaviors such as stereotypy, tantrumming, and aggressive behavior.
ABA as a teaching model is applicable to teaching anything, but as a method to change difficult behaviors of individuals who may be creating very challenging situations for parents and caregivers. It is a basis for the most effective method to change behavior.
It's a pretty long story, but we have found a doctor/professor from UND who specializes in ABA and he trains graduate students the ABA method of therapy. He will be overseeing 3 individuals who will act as Peter's PCA's (Personal Care Attendants) and they will provide 28 hours per week of therapy. It will be one on one. They will come into our home in the evenings and on weekends. Eventually they may be able to see Peter a few hours per week in his home daycare setting. Peter is also on the waiting list to begin daycare/preschool at Sacred Heart. Since that is a center, opposed to a home daycare, it will be much easier for him to have his "helpers" be there to help him so at that point, a majority of his therapy will take place during the day. (Hopefully by next summer) In the short term, the first few goals for Peter's therapy will be to get him potty trained and help with meals and daily living skills.
We just found out that we will be traveling down to Rochester in December to have a few more appointments. We will be seeing the doctor from Genetics and the Neoropsychologist who has been handling Peter's case. They will basically be checking his progress. I believe we will be in Tier II of Genetics testing (meaning they are digging "deeper" into Peter's genes) in case there is something of interest that could help guide the prognosis.
Well, that's all I've got for now. Keep us in your prayers, please. Some days we don't even know that we are fighting this battle and some days we feel completely defeated. That's the cycle of life regardless so we don't let the tough days keep us down for long. :D But we can feel when the prayers of others are holding us up when we feel like we are crumbling, so keep them coming.
Hope you're all having a great week!
