It has been a rough couple of weeks and I'm glad that all my boys are off for the summer, so there is some down time instead of the constant go go go. With the end of Nate's twice a week speech therapy with the school district and the end of the school year, he hasn't had any therapy for about a week and a half. I have been calling the school district about his Extended School Year (ESY) services and I was told nearly two weeks ago that the summer school SLP would be getting in contact with us and that services would begin on the 21st of June for five weeks. Since I had heard anything, I called again on the 19th and left messages for several people. It's now the 20th and I have not heard a thing. It's frustrating when I have to be the one to follow up on things like this. In addition, I do not know if Nate's private school will continue to have speech services and OT services through the summer or even next year, as the team there had to reapply for a grant to cover their costs and they will not know the outcome for another couple of weeks. On one hand, I think maybe we should just take a couple of months to rest and relax and enjoy the summer, free from school and running around to therapy appointments. On the other, I know that Nate's CAS is not just going to get better overnight and that he needs weekly, if not daily focused practice.
At the beginning of June, Nate went in for an OT evaluation through our medical provider. It was an interesting experience. I could tell the OT had a lot of experience working with 3 year olds as she was very patient in getting responses from him. She began with the fine motor types of activities, like building things with blocks and cutting. She then moved to the gross motor skills, such as walking backwards, standing on one foot and jumping. Since there are not very many kinds of standardized assessments for preschoolers, some of the assessment pieces he completed were similar to those he had done the week before with the OT at his school; even though they were different standardized assessments. This OT was puzzled by his gaps and we have another appointment scheduled next week. Some of the gaps may have to do with limb apraxia, such as when walking upstairs, he will only use his right foot, instead of alternating. Some things are more difficult for him to do on command, but come naturally when he is not having to think about the motor planning to go with the movement. Something else that is odd with Nate, although we strongly feel that he's going to be a lefty, it that he will use whatever hand happens to be available at the time. Maybe he is mixed-handed or ambidextrous? We have been told, although he is not showing complete dominance, that he shouldn't be forced to use one or the other.
Later that day, I had an appointment to meet with the SLP and OT at his preschool to go over the results from their assessment. They had videotaped the session from the week before. This assessment was done in reverse, in that the OT had Nate doing all the gross motor skills and then the fine motor skills. As I watched the video, I noticed some odd behavior. He was not doing anything that they were asking him to do most of the time. He'd just stand and stare. It was very strange and very upsetting. I don't know if he was just not understanding, although everything they asked him to do, he knows how to do. Or if he thought it was strange that they had him using equipment in a rearranged room as well as have someone he didn't know there filming him. We've always had a hard time getting him to "perform" activities that he can do on his own, could be part of limb apraxia? In debriefing the assessment and video with the OT I got very upset. I have felt that this particular therapist thinks that Nate is retarded and told her what I thought. She is someone who did not agree with me, when I first felt that Nate had apraxia and has continued to maintain that he does not have apraxia. It felt good to put how I felt out on the table, although I know that sometimes I'm not the most tactful person and I know that I should not attack those that are trying to help my child. I'm just not sure what it is, but I do not feel that she sees the Nate that the rest of us see--A highly aware and observant child. I know that he has difficulties but I don't believe she sees beyond that or around those things to see who he really is. I have always felt that Nate copes with his disability by just not attempting to do things he knows he cannot be successful at. It becomes extremely frustrating when you are not only having to fight to get therapy for your child but you have to fight or educate the people who should be the ones helping him.
In the end, we know that on top of the speech issues, he has some fine and gross motor issues as well. So I'm still back at square one.....how to get him regular and consistent therapy year round.
