Another Year

So this is the third anniversary of this blog. And with that, I look back and take stock of where we are in our journey. And while we still have a long way to go, and progress feels like it's going at a snail's pace, there's lots to celebrate, too.

Fox still doesn't have any verbal words, but his vocabulary of signs has really come along and he is trying to make sounds a lot more. Our work with RDI has also been progressing - Fox is trying a lot longer at a task before checking out or having a meltdown, and he's starting to understand non-verbal cues like pointing. Further, he's even spontaneously pointed himself! He's spontaneously labeling and has become a lot more verbal - we're not able to pick out any words yet but it's a step in the right direction.

As much progress as he's been making, I feel this year was a big one for Lisa and I as parents. Every time I update the blog there's typically been numerous updates in our situation and life has really felt that way. You can call it our "Parent Education Phase" as we've become more conversed in the different therapies, treatments, etc that we navigate on a day to day basis and met with other parents who are dealing with the same issues we are.

This past Thursday we went to the Kidsability School for a Registration and Information night, and met with Fox's new JK teacher. We don't want to get ahead of ourselves but it looks like a really exciting program. Not only will they be doing therapies in conjunction with the kindergarten curriculum, but the class size is only six children, with 5 adults (inlcuding teachers and volunteers) supervising. Some of the therapies they've done in the past include horseback riding (Hippotherapy) and music therapy.

So, we're off to a good start. Hopefully, we've laid enough foundation for the progress to really start ramping up this year!

Avoidance and Resilience

Last night as Duan and I were eating dinner, Ruby was playing with a Busy Poppin' Pals toy and was getting frustrated with one of the doors that wouldn't close. It needs to be turned to a specific place or it won't close and she couldn't get it to close so kept asking for help. I jokingly told her that Fox solved this problem by just never opening that specific door, since the other doors are much easier to figure out, so that's some good problem solving. Then Duan said that it sounded more like avoidance to him, and he's so right. I've been thinking about this ever since, it's a very good point and really changes how I look at things. We talk a lot in RDI about Fox's resilience, so it was interesting to see the difference between a NT brain and an ASD brain at work. Ruby kept at it and was determined to figure it out and came for guidance when she needed it, whereas Fox just avoided the problem altogether and probably still doesn't know how to get that door closed. This came up again today when we were visiting with our RDI consultant. We were talking about his resilience and how he is making so much progress in this area, and it came up that Fox didn't start walking until he was very good at it. It happened at 17 months, he crawled and cruised for a long time and when he finally started walking he was very stable and was running that same day. When Ruby started walking at 12 months, she was pretty unstable for months and fell a lot, to the point where I was worried that something was wrong. But of course it wasn't, this is just the way it goes, practice makes perfect and she went for it and kept trying even though sometimes she fell. Fox on the other hand didn't have the resilience to try before he was sure that he was stable and would be able to do it right. It seems like he has a fear of failure. So then our RDI consultant pointed out that when he does make sounds and try to talk he can tell that it doesn't sound right and so he avoids it. I use to think that Fox's speech problem was only due to his motor planning problems, but now I think lack of resilience is also a major factor. To improve his motor planning he needs to practice, practice, practice so that his body will get use to the muscle movements and eventually not have to think so hard and put in so much effort to make different sounds. But because of his lack of resilience he's not practicing because he knows he can't do it perfectly. I was driving around yesterday afternoon and Fox fell asleep in the car, Ruby said 'seep' to tell me he was sleeping. I said 'yes Fox is sleeping', so she kept repeating 'fox seepee, fox seepee, seepee fox' all the way home. She learned a new word and was practicing it and had a big smile on her face the whole time.

I feel like I'm finally starting to really understand what's going on with Fox, and for the first time in a long time I feel like we're on the right track to really help him. I feel really good about everything we're doing right now. RDI will help us continue to build his resilience (among other things), Reflex Integration will hopefully help us with his motor planning (we've just begun this so time will tell), TalkTools Therapy will help him build the necessary muscle strength and oral motor planning for him to say the words once he finds them.

On and on and on we go....

Lisa