Looking Back at 2010 with Brycen...Looking Forward to 2011

I cannot believe that 2011 is already here tomorrow! So much has happened in 2010 with our family and so much of it is positive.

When we started 2010, we were still so unsure about what the next steps were with Brycen and his treatment. We were unsure about who was really supporting us and who we could count on. As the year progressed, we became much more confident in our decisions with him and our life in general.

We started speech and occupational therapy in a clinic separate from the services school has for him. We decided to face our fears of trying medication with him for sleeping at night. We also faced a huge fear of most parents of children on the spectrum by moving across the state to a new town, new home, new school, new therapists, etc. Even though the move was a choice made by Mike's job/bosses, I really think it was in Brycen's best interests in so many ways.

Since we have moved, we have NOT endured one of those extreme meltdowns that used to last an hour or longer where we had to hold him down to prevent him from harming himself or breaking things. Of course we have had some pretty good temper tantrums, but nothing to the extent that we know it can be.

Overall, I feel like we have so much more support from the new school, being closer to our family, and from the new store that Mike works at. We loved the therapists at both places, but I even feel more connected to the clinic here with all the "extras" they have been teaching us with Brycen such as the brushing therapy and the introduction of the Go-Talk device.

Our new doctor has been very supportive in helping us find a psychiatrist to see Brycen in January that travels to the area to prevent us from having to drive too far. We have the Genetics testing lined up for February with U of I. I just really feel like we have made so much more progress in understanding what our options are and what we are ready to try.

I also wanted to update everybody on the status of our decision for the communication device. We have been discussing devices for at least a year and were originally looking into much simpler devices than what we ended up choosing. The stress that I was having was not over the question of whether Brycen is ready for a more high-tech device than the Go-Talk or using just PECS...but over the decision on if I was choosing the best device for him that needs to last him at least 5 years due to funding purposes. Of course, every parent dreams that in 5 years their non-verbal child will be talking and communicating without the need for a device, but we also want to be realistic and we know that even if he is verbalizing more at that time, he will probably not be able to have functional communication and will still rely on a device for many years to come. The reality of all of this just hit me hard the other day and I apologize if it seemed to give the wrong idea to people. We KNOW Brycen's ready for a device...we know the limited funding we have available and how long it lasts...and we know that if we don't move forward, we risk more regression and only maintenance of his skills. We want to challenge him, but not overwhelm him. We don't want to just maintain his skills anymore. We want to see more progression if that possibility is there.

So many people have mentioned to me about staying positive about his outcome and to look at all the great things he can do. I'm trying to take all of that advice in and finally came to this conclusion: I'm sick of complaining about Brycen not being able to talk to me; I'm tired of wondering if we are doing all that we can for him; I'm frustrated with people thinking I am not positive about my son and his qualities. So instead of feeling sick, tired, and frustrated about the situation with the lack of communication, we are going to do something about it more than what we are already doing with the extra therapy outside of school. We can do this by getting a device for him that will let us be able to program it to a simple form like that Go-Talk, but also have capabilities to see him through independence with communication. Maybe he won't ever get to the point of using all of the features the device has...but I refuse to sit back and wonder for another year if we could have made more progress if we had just pushed him a little bit further.

Our final decision was the Alt-Chat as we loved how light it was, how easy to transport, how we can do the programming through our own PC and then load it to the device, the extra features it had, his reaction to the device when we showed it to him, etc. Once Mike and I came to this conclusion the other day, it was complete relief. Of course, we need to wait for the trial device to be sent to us which we can utilize for up to 4 weeks. Then we return the trial device with our "final" decision to the company and after getting an order from his doctor and from the speech therapist, as well as Medicaid approval, we then wait until his own device is sent to us. This could take a couple months so I am not anticipating starting this until at least March or April, but in the meantime, we will continue to expand on what we can with the Go-Talk at his therapy sessions.

We can only go forward. No more going back!! 2011, here we come!