Thursday, October 20, 2011

Still here!!!

Honestly, I've been meaning to post an update here for about 3 weeks now, but just't come up with the right words. I probab still can't at this point, but I'm hoping that by blogging it will therapeutic for me. So...

Remember when I posted here how well Jayden was doing in Pre-k at his new school? Well, about 3 weeks after that post, it's like something happened overnight to turn that entire post upside down. I started receiving daily calls from the teacher concerning Jayden's behavior. At first, her tone was always positive and she'd send home notes saying what he had trouble with but that he's working on it (and she'd add a little smiley face). The calls continued, daily and by say the 5th or 6th call, her tone changed. I cannot remember what her complaint was on that day (he was mostly being disruptive during naptime) but when I hung up the phone with her I told my husband that I could tell from her tone that she was just about done dealing with Jayden. His behavior notes were coming home now with a negative tone and of course no more smileys! Well, the next day, she called again. She told me that the speech therapist came to get him during arts and crafts time (I assume they have no control over when the therapist comes b/c taking a 4 yr old away from arts and crafts for something that's frustrating to him is just not a good idea, IMO) and Jayden saw her and started screaming "NO!!" She told me he was throwing his arms around so that she couldn't grab his hands and just kept screaming "No!" (perhaps he was trying to communicate something to them?? Far fetched???) She told me the speech therapist went to grab him by the arms to hold his arms down and he grabbed his scissors and swung them at her. I was speechless. So are you telling me that my son intentionally grabbed a pair of scissors with the intention of actually HURTING the speech therapist? Because that's what it sounds like you are saying and that's not my child. He has NEVER been that aggressive. Now, had you told me he grabbed the scissors and threw them across the room, I'd totally buy that. Just as he would have grabbed a book, a box of tissues, crayons, papers, or just about anything in his reach to express his frustration when words are not working. But he would NEVER intentionally cause harm to someone. So anyway, she goes on to say that she stepped in to help the therapist and Jayden hit her in the nose really hard. I remained speechless. Who was this child she's describing to me?? Once I could compose my thoughts I simply said "I have no idea what to say. This does not sound like my son AT ALL. He has NEVER behaved in this manner. Ever." So then she says "Well, I'm not sure there's much else I can do to help Jayden, at this point." and she went on to suggest moving him back into the preschool class with non verbal 3 yr olds or to a VERY restricted classroom for children with extreme special needs (Jayden does not fit either category). Mind you, she was saying all of this after only 7-8 days of behavior problems. He was once a very well behaved child. It's as if she wasn't willing to take the extra time needed to figure out WHY his behavior changed so tremendously. I got off the phone with her but emailed her later requesting an IEP meeting (definitely something that she should have scheduled prior to suggesting a placement change over the phone), an OT eval, and to let her know that I would be stopping by one day during the week to see if I can tell what's causing him to act like a totally different child.

Well, I went the next day. During naptime, since that's when she claims to have the most issues with him. We walked in and he was COVERED in play doh. in every single nail on both hands, all over his pants, all over his socks, on his FACE! She gives him play doh so he can be quiet during naptime. Play Doh has WHEAT in it. Wheat is off limits to children with Celiac Disease. I mentioned this right away, but I didn't blame her b/c I didn't send her the teacher's form I usually send to his classes. Instead, I sent him GF play doh with his supplies and foolishly assumed he'd only have access to what I purchased for him. But no, it all goes into the classroom supplies and they are shared, which then would cause cross contamination issues. So right off the bat, I saw he'd been exposed to gluten. As I talked to her, I was extremely distracted by the music she had playing DURING naptime. It wasn't a soothing lullaby type song. It was music with different pitches. All over the place. Very distracting...and loud. Jayden has neurological and sensory issues. That music was definitely setting him over the edge. He was noisy during nap b/c he was attempting to block out the music, I'm sure. Even at home, if music comes on TV that he can't tolerate, he makes loud noises. He has always done this. It's a defense mechanism for him. Well, after naptime, the kids started to get up and go to centers. Jayden started out at the painting center. There's a limit to 3 kids per center and the way it's set up is not very kid friendly. They have their pictures on a stick and they stick their pictures inside of a see through envelope. Before entering the center, they have to stop and count the pictures. If 3 are in there, the center is closed. Maybe I'm just used to my kid, and I know he's not as advanced as others, but there is no way he will decide he wants to try a center, then stop and figure out if there's room for him by actually counting stars. He just doesn't have the attention skills yet for that. He's very impulsive. I think for him, velcro tips would work better. If he doesn't have velcro, he can't go in. However, he's not understanding WHY he cannot go into the ceter if he can still open that envelope and stick his picture in. Frustrating. So anyway, it was quite simple for him at first b/c kids were slowly getting up and putting away their mats so the centers were free. Well his best friend woke up and Jayden wanted to play with him. His friend went into the blocks center and two other boys got there before Jayden. Jayden wanted to play blocks with his best friend so he stuck his picture in, making it 4 kids in the center. His teacher told Jayden it was closed and he needed to go to another center. Jayden had a fit. He screamed and cried and was in a frenzy, trying to figure out a way to get in the blocks center. He even grabbed his picture and stuffed it in an envelope in the center next to the blocks. The teacher looked extremely frustrated with him and was not really trying to get him to look her in the eyes so she could calm him. Eventually, one little boy left the center, so Jayden was able to stay. The teacher then said "See, if he wouldn't have been able to stay he would have never stopped." Hmmm. I asked her about the scissors incident, and all of a sudden the story changes to something that sounds more truthful. "Oh I don't think he was intentionally trying to hurt her. He just grabbed the closest item to him. And I think his hand hit me in the face b/c he was still upset and swinging his arms." Of course, his IEP progress report says that he "attempted to hit speech therapist with scissors..." This report will follow him throughout his school history. I am in touch with the superintendent about this...

I emailed her my concerns and suggestions. I sent him a white noise machine from home to use for naptime and I did mention to her that the music was probably making him defensive with his ears. I also sent his weighted vest to help calm him. I continued to suggest the OT. About a week after that, we had the IEP meeting. I noticed that Jayden came home with 2 behavior reports that said he spent "some time" in the preschool class to "cool down" and another day he was bit pretty hard and they had to send a note home about it and the preschool teacher signed it. So he obviously was bit while in a class he shouldn't have been in. I planned to bring that up in the meeting. We arrived 15 minutes early, just in time to see all of the pre-k classes walking to their rooms. Jayden's class Jayden...About 5 minutes later, the preschool class passed. Mind you, this is the early intervention preschool program for kids with special needs. There were 4 students and 3 teachers. 3 of the students were visibly disabled. The 4th student was the leader of the pack and obviously not disabled and much larger than the other students. The 4th student was Jayden. My husband was pissed. We had not given that teacher permission to move him. I even expressed my concern with it over the phone and told her I didn't want him moved, yet she still moved him. This was going to be a wonderful meeting.

So his teacher starts the meeting by saying "We called this meeting because..." Um, correction. You did NOT call this meeting. I had to request one when you told me you no longer could handle him in your class. Anyway..."Because Jayden has been exhibiting aggressive behavior and refusing to transition in the pre-k 4 classroom. We would like to move him to preschool early intervention, where there are less transitions. more one on one, and less stimulation. I immediately expressed my disagreement with that. I said that I didn't agree with the placement change b/c it would definitely affect his speech. I feel that typical peers are THE BEST speech therapists he could have b/c he wants to be like them. His speech soared within the first 3 weeks of school. He was more sure of what he was saying and wasn't afraid to talk to strangers anymore. He was proud of himself and we were proud of him. I was also concerned about him mimicking behaviors in the special needs classroom. We had this problem at his last school. He would notice other students getting positive feedback for utterances and any sound they made to communicate, but that's b/c that's what they can do. They were non verbal. He is verbal. He needs to be around peers that are verbal. The preschool teacher chimed in and said "Oh but we talk! We talk to them all day!" That's fine, but Jayden follows other kids. If he has the choice to act like a 3 yr old or act like an adult, he will act like the 3 yr old. Also, I was concerned about his social skills. He's an only child (for now) and has had a hard time with learning to share, but has been slowly getting better. Now, in the preschool class, since he's so much bigger and older than the other kids, they teach him to tell the kids "Walk away." Hmmm, not sure that will work for him in kindergarten, other than getting him laughed at by everyone else. After I expressed my concerns, his pre-k teacher shut down. Didn't say a single word for the rest of the meeting. Perhaps b/c she knew she'd messed up by moving him already, without our permission. The meeting was a little over an hour, and in the end, I agreed that since he was already moved to the preschool class (which is where he wanted to be b/c he rules the roost so to speak) he has won the battle and for us to pull him out and place him back into the pre-k class (where he obviously no longer wants to be) would make things worse. He was in the preschool early intervention last school year so he may just be more comfortable. So the plan is to slowly move him back into the pre-k 4 classroom. An easy transition. They want to make it seem like it's a treat for him to go to play with his friends in the pre-k class. For the first week, he had a hard time spending even an hour in the class. The teacher even sent him back to preschool early b/c he wouldn't pick up toys. How stupid?!?! I do think he was acting out at first b/c he thought he was being sent back to her permanently and he's not ready for that yet. The next week, I think he realized that he's only spending a little time in the pre-k class and then he goes back to his comfort place so he's doing much better. They say that he LOVES going to pre-k to play with his friends and he even transitions well while in there. His time will be increased next week.

All in all, he's doing 10 times better in the preschool class, as far as behavior goes. He's doing his lessons, transitioning, helping in class, not screaming, NAPPING (maybe the lack of crazy music helps??), and wanting to impress his teacher daily. He's even doing better in speech and meeting all of his goals. On the other hand, he's not using his words as well at home. He babbles A LOT. He doesn't want to play any game that involves another person holding a toy or game piece. He wants it all to himself. He prefers to play with smaller children now and when he plays with them, he does not talk. He makes LOUD babbling sounds. But then if an adult talks to him, he will use his words. He ignores kids his age. IMO, this is regression. I don't want my 5 yr old seeking the company of a 3 yr old b/c he doesn't feel he has to talk to communicate with them. How is that building his self esteem? He obviously prefers the smaller kids b/c they don;t have the words to outwardly judge him and how he talks. Kids his age do. I know it's hard for him, but he has such a strong spirit and he does continue to try. How long do we continue doing what's comfortable for him before we attempt to push him (even slowly) towards where he needs to be? He's not being prepped for kindergarten in a preschool class. In kinder, they have to share. In kinder, they talk to each other. We know his speech is delayed but if he learned so much from typical peers in only 3 weeks, imagine how much he could have learned in 9 months with his peers?

I'm also still in a fight with the OT. When I asked (several times) whether or not he was getting OT, she never answered my question straight forward. After a stern email about my concern for Jayden, she called me and finally told me that he is INDIRECTLY receiving OT. So basically, she goes to the class to do individual therapy with the other kids and Jayden has the option to either join in with them or continue doing what he's doing on his own. If they are doing something he WANTS to do then he will join in, but if not, he ignores them. OF COURSE. That's not therapy. That's BS. I am truly tired of fighting these people but I can't give up b/c it's all for him. He doesn't know what's best for him. However, being 7 months pregnant, it's really hard to carry such a burden so I'm in the process of getting an advocate.

On the medical side of things, he saw the neurologist today and she thinks he is having small seizures and auras again :( Not nearly as bad as he was last year, thank God for that, but it's still something she wants to address b/c it may have a lot to do with the behavior changes he's exhibiting. He will be admitted to Children's Hospital on November 1 for a 24 hour EEG. Depending on the results, he will either have his medications increased or switched.

1 comment:

Mama Or Not said...

I just wanted to saw what a wonderful mom and advocate you are for your beautiful son. Hope November's EEG went well.