In January shortly after Gavin returned to St. John from Christmas break, he had one heck of a bad day at pre-school. So much so that they called me at work and asked if I could come get him - and this was at 11am!! He was refusing to listen, was screaming when given any sort of direction and just being a pistol. When I picked him up he was waiting at the front and when I started to cry, he asked why and when I explained that it made me sad that he was having such a hard time at school and I really wanted him to be happy, he handed me a picture he had made and said that he hoped that would make me happy. So see, even in the midst of his awfulness, he can still be a really sweet boy. SO, of course I got called in to a meeting to see what we can do to make Gavin "more successful" at school and so we can all be on the same page with discipline and what would help him get through his day without meltdowns. I happened to mention that he always seemed to have problems with the assistant teacher and they all gave each other a look and explained to me that she is very tall, has a very sharp voice and tends to get in the kids space when talking to them - all things that I can tell you will throw Gavin into a tailspin, especially if he's already heading that way. Bad thing was that his main teacher was heading out for eye surgery and the assistant was taking over the class. Combine that with Gavin's utter inability to adjust to change and I knew we were heading for a few weeks of not-so-greatness. They mentioned that they would like to make a decision about Gavin within a few weeks time to see if he was making progress. I told them this was not the appropriate time to be evaluating since we knew that his teacher was going to be out - I could tell them this was going to be tough for him. Plus, he had just begun seeing the social worker for play therapy to work on his inability to transition and accept disappointment, frustration and change. All of these things combined, I just felt like they were setting him up for failure by making a decision on his future at St. John within a couple weeks. When I left the meeting, I felt we were on the same page and we were all going to work on helping Gavin succeed. I checked in with his other school, just in case, to see if they had room for Gavin on MWF should this not work out, but they were full. They also said they did not see any heightened behavior like St. John had - interesting. We had also started a Red, Yellow, Green system with Gavin too to help him talk to us about his days, see what was going on and have some consequence at home if he had Red days at school. He really seemed to grasp this concept and would tell us "I'm going to get a green day today, Mom".
Here's the sucky part. Gavin had another tough day right before his teacher came back from surgery and Jon and I were called in again. I guess I'm naive because I thought we were going to talk about how he had done while his teacher was out and how to move forward. Nope. The basically told us that they were not equipped to help Gavin with his challenges and it would be best if he went to his other school as they were better equipped to help him. Keep in mind that the main reason we had decided to keep him at St. John was for the "typical" peer interaction - he had friends at St. John and we saw better social interactions than we did at the special school class. Also, I had always checked in with St. John to make sure Gavin was doing OK and they were able to help him along, to which they always agreed. I was so angry that they were making this decision after only a few weeks and at a time when I knew his success would be challenged. We told them that his other school was full so he would now only be attending pre-school 2 half days per week. To their credit, they did look dismayed at this information and said they would talk about what other options they could come up with. I left furious and confused and just plain sad - I didn't know how to help Gavin and I didn't know what to do next. St. John came back with an offer of 2 half days and another "re-evaluation" after a few weeks. He was to take a weeks break, they would not allow him to attend the Valentine's Party and he could start on the Monday after with the new 1/2 day schedule. Jon and I really did some soul searching and decided that this was just setting Gavin up for failure - that he would be under the microscope and when he would be leaving school before lunch and his friends would not, it would be another transition/change for him that he would have trouble adjusting to. It was a hard decision to make and yet easy as we both felt they didn't want him there and we weren't willing to put Gavin through that scrutiny just to have them decide a few weeks later that it wouldn't work out. We've never questioned his intelligence so we weren't worried he wouldn't be prepared for kindergarten, just that he would be missing out on social/emotional development with peers. I wrote a letter explaining our decision and letting them know how disappointed we were in their ability to work with Gavin, after all this is just pre-school folks! We didn't receive a response from his teacher.
His other school, ECC, had suggested that a psychiatrist evaluate Gavin in the classroom just to give us another set of eyes and we went to this meeting shortly before the shit hit the fan at St. John. Basically, the doc came and met with us and Gavin's teachers about our concerns and what was going on. Then he went and took a look at Gavin in the classroom environment for 30-45 minutes and came back to talk to us alone about our concerns, get a little history and then brought everybody back in for his "results". Can I just tell you that this one meeting lifted a weight from my shoulders, and not because he had the answer or the "fix". It was because he called Gavin "a conundrum"!! Thank you! That's it exactly and why I keep fighting and searching for the "right" answer. The PSYCHIATRIST said that he didn't know how to explain what was going on with him and that he was baffling. Three years ago when that first report told us that Gavin had autistic tendencies, I just knew in my heart of hearts that wasn't really the answer. Don't get me wrong, there are definitely things he does that are on the spectrum, but as a WHOLE, it doesn't fit him. And that is really what bothers me the most about all of this - everybody is very good at looking at a little bit of Gavin, a snapshot of his day or his personality or his social interactions, but they don't see the whole picture. They don't see him at his best and his worst and his "yellow" and try to put that all together to help him. They look at what they see, or what they want to see, or what they don't see, or what they are experts in, or what box they might check for him...and THAT'S what wakes me up at 3am sick with worry if I'm screwing him up. That somehow we are missing something and if we could only figure it out, we could help him. I know I sound like one of those Moms that doesn't think there is anything wrong with her kid but I promise you I am not. I'm just one of those Moms who knows that there is something not quite right, but that everything that has been done so far isn't quite right either. The best way I can describe it is that Gavin just does not seem comfortable in his own skin, that something prevents him from adjusting to life the way it is. And I'm just going to say it... I still feel like losing his twin affects him and how he handles this world and we just don't know how or why. I'm pretty sure we never will.
(I told you this would be lengthy) The psychiatrist recommended taking him for further evaluation in psychiatry to see what they could do. Which we did. If someone had told me that psychiatry would only look at whether a child needs meds or not, I would have saved my $300 for a rainy day. This doc agreed that Gavin did not need meds at this point and that everything we were doing for him at this point is what we should be doing but if in the future, meds would be needed, then we could come back and see him. I really thought we were going to help deal with the "why" behind Gavin's behavior, but apparently that's not what they do. When we were sitting in his office talking about Gavin's history and what we have tried since his non-diagnosis, it really made me think. We have done so many evaluations and appointments and yet they all end with the same conclusion - it's something, we just don't know what. And we've seen such improvements in him as well. His relationship with Harper for one - what a 180 since she was born. His interaction with peers - another 180. His ability to accept change - OK, not really a 180 but definitely improved! So here we are almost 3 years later and really no closer to figuring this kid out. I swear he better turn out to be the next Steve Jobs so I can look back and laugh at all this stress one day.
So where do we go next? A few positive things have happened. We had his transitional IEP meeting at his planned kindergarten school and for the first time, Jon and I both felt that those people who would be involved in Gavin's school life were really interested in helping him succeed and had a good handle on how they would make that happen. We left that meeting with a sense that he was going to have a good support system for his grade school beginnings. He's begun play therapy with Ms. Kelly at ECC on Tuesday mornings to help him work on transitions and dealing with changes - he seems to really like his special play time and we are hoping to see improvements in his behavior as a result. I've asked his school to re-evaluate him for OT as I think some of this junk we are dealing with is sensory related. On all of his red/green/yellow reports that are sent home, his red times are always related to dealing with some type of transition. Actual class or circle time he seems to do fine - it's the change that wigs him out. I don't know if you remember but last year he qualified for PT and OT but both were discontinued as he was found to be above and beyond his age in fine/gross motor skills. I was elated at that time because it proved what we already knew, how capable and smart he is. I am now beginning to think that we missed a component and perhaps he needs additional help with his sensory processing. He still hates to get wet if it's not swimming or bath related, dislikes loud sounds or his sister crying (unless they are sounds he makes himself) and gets very overwhelmed in new or over stimulating environments. My friend Jayne takes her daughter to a place called Leaps and Bounds that deals with the sensory issues and when I did the online survey, I found that some of the things described Gavin to a T. So once again, we are taking him for another evaluation to see if that is something that will help him. Plus, this is something we can continue over the summer since everything that is tied to his ECC class will end with the school year. I'll let you know what they say. I figure if this isn't it, then it's another thing I can cross of my list. Gavin's also been doing some crazy things with his eyes and when I took him to the Opthamologist to get his eyes checked (20/20 of course - yet another thing we have to figure out. Next is an MRI to make sure it's not neurological) and talked about his challenges, he said that 20 years ago, we would have just called kids like Gavin quirky and that would have been the end of it. I think he's exactly right and I'm completely fine with quirky - it's the rest of the world he has to live in that I worry about. I know some people look at Gavin and just think he's a brat, needs a spanking and we are pushover parents. I promise you, that is not it. Sometimes it is, but often I find that there is something else going on, something that he can't quite handle or process and he really doesn't want to misbehave - he just doesn't know how to act any differently. It doesn't make it any easier to deal with him by any stretch, but it does make me stop and think before I react (well most of the time). My fear is that the rest of the world will judge and react and try to fit him into a box that they think defines him.
I saw this on TV this week. I'm sure you remember PDD-NOS is something that has been thrown around as a possibility for Gavin - basically you have some autistic qualities but not enough to place you in one certain category. I loved this because of her platform "Normal is just a dryer setting". I've never claimed to be normal. Some of my favorite people are definitely not normal.
http://www.cnn.com/2013/01/17/health/wineman-autism
Gavin has and always will be different and until he can fight for himself, I will fight for him. I'll tell him he's quirky and that's OK. In fact, I down right love quirky!
And now you'd think I'd have some great pictures for you to enjoy for sticking with me this long. Well I can't find them so here's a few and the next post will be chock full of pictures, I promise. We took the kids up in the Arch - they loved it! My friend Carrie's little boy James had sent us a flat James to take with us on an adventure and then report back to his class. Gavin thought he was awesome and we had to make a flat Gavin for him once we were home. The last picture is Gavin earning a badge for both him and flat James at the museum in the Arch. He was very proud of that badge!
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