Busy Bees!!

We finally added an OT to Jayden's group of therapists and I'm happy to say that after a very rude encounter and cancellation of the first appt by one OT, we did end up with an AWESOME OT. I am definitely a true believer in that everything in life happens for a reason. I cannot say enough good things about Mrs. L. She's been here for 2 weeks now and she's taught me things about Jayden's sensory issues that I didn't understand. So with that said, we have therapy 3 days a week, and Jayden started a MMO program once a week. He goes on Mondays and he loves it! Yesterday he actually skipped to the door of the building singing "School, school, school!" It makes me feel good to know he loves it that much. He's also been having soccer games and practice, so between all of that and add in my photo shoots, we've been busy! Things are going well, health wise, and Jayden is going to see a neurologist in New Orleans soon for the seizures. I just wanted to post an update on us and I'll leave you with some pictures that Jayden actually cooperated with me to get. This certainly makes this photographer mom happy :D

When will he get a break?

Yesterday I called the nurse about Jayden's EEG results. She told me that they hadn't received his report yet, but she would call to request it and give me a call with the results. Now I went into all of this with the frame of mind "We are simply RULING OUT seizures.". I know that Jayden does have some concerning behaviors that appear to be seizure like, but I also had so many "specialists" telling me that it could very well be behavioral. So, in my mind, I had prepared myself for a normal report, especially since his CT scan was normal. Well the nurse called this morning and she sounded a bit concerned so I immediately knew they found something. She said "Jayden's EEG report is actually showing some seizure activity." My heart sank. I was fighting back tears b/c my son was playing on the floor right at my feet, and my husband was sitting across from me. Besides, imagine how that nurse would have felt if I went into hysterics over the phone?! So I kept my cool and she went on to tell me that he has already been referred to a neurologist and they will try to see him asap. I hung up the phone and my husband just looked at me. I told him that was the nurse about Jayden's EEG and that it did show some seizure activity. My husband said "Oh no..." At this point, we have no idea when he's having them b/c during his EEG, he did cry in the beginning, but he showed nothing like the behaviors we were concerned about (stiffening of his body, growling, blank stare, and sometimes drooling). He did fall asleep for the test and I know that seizures during sleep are common. So of course, now we worry. All we can do is wait on the appt and pray for some answers for our little guy. We are getting there b/c just a few months ago he was considered just a kid going through the terrible 2's. If you are the praying type, please eep our little family in your prayers!

And the hats are back...

Just as I suspected. When Jayden was "evaluated" last month by the behavior analyst, I blogged about it here and mentioned his strange use of hats:

"... he uses that hat to avoid eye contact when he isn't in control. Jayden started wearing hats like that when he was having speech and OT once a week. He would wake up and immediately look for a hat. It had to be b/c he knew he would have therapy and he wouldn't be in control. He ALWAYS had a hat on his head. He stopped wearing the hats about a month after they stopped coming and now he just grabs them as needed, like this morning."

Once he stopped having therapy in April, he stopped wearing the hats. We couldn't even get him to wear a hat if we wanted him to. Now, he's been back in therapy for 4 weeks now and the hats are back. 24/7. He even sleeps with the hat on. He HAS to have the hat on the counter, in his view, while he's taking a bath. And it goes right back on his head after I change his clothes. To Jayden, those hats are more than an accessory. They are a sense of security and control. So here is where my issue lies...I'm not sure if he will be able to wear his hats to school starting in January. Should I bring this point up to his behavior analyst and get her to start working on him not needing the hat? I worry about how it will affect him, but I know it is something that we need to address...

Blastball

It's soccer for tots :) We signed Jayden up and his first practice was this evening. My husband had been working with Jayden to kick the ball, so he was ready for action. And he looked darn cute in his shin protectors and soccer socks!

We got out there and all of the kids (there are 7 on the team) were kicking their balls about. Jayden took his ball on the field and joined in. Then the coach had the kids to line up on one end of the field and have a parent on the other end, and the kid was to kick the ball to their parent. Jayden had a hard time waiting for the signal to start, but he made due. After that, the coach had the kids to put their balls aside and they were to only use 1 ball. The kids had to line up and wait their individual turn to kick the ball. We knew Jayden wouldn't be able to do this. It would mean that he HAD to interact with the other kids and he no longer had control over the ball. He didn't like that and any attempt to make him wait in line started a tantrum. We have him out there to have fun, so we didn't force him in the line. He wandered to the field next to us and just sat there and watched the other kids play =( It was tough for me to see the other kids having fun and hear their parents cheering for them and then look over at my son who has distanced himself from the team. We gave the coach a head's up on Jayden's condition and he did his best to not make Jayden feel left out, but with a team of 7 players that's tough. When they simulated a real game, it had to be 3 against 3, so one child would always be left waiting their turn and of course it was always Jayden b/c he didn't want to interact with the other kids. We know he will get better and we know that this is good for him so we won't take him out. I just hope that it gets easier for me to watch...

Deprived

So today was Jayden's EEG. It was scheduled for 12:45 and the Drs office advised us to have him sleep deprived for the procedure b/c they would like to see some readings while he is asleep and using a sedative could have possibly affected the results. So, thus the adventure began last night. My husband and I stayed up with Jayden until a little after midnight and I woke up with him at 4am. Getting him up at 4 was not an issue (for him). 24 hour Noggin is awesome!! He was singing within 20minutes of being snatched out of bed. At 6, he asked to watch Spiderman 3, so we (he) watched that and then we watched some Michael Jackson videos. I could tell he was sleepy, but he wasn't going to give in to sleep, which was good for that point in time. One thing I found out today is that my boy is SO lovable when he is deprived of sleep. He just kept running up to me and throwing his arms around my neck and giving big, fish mouth kisses. Oh so sweet. Perhaps he was thanking me for allowing him to skip sleep??? LOL! We got to the hosital at 12:30 and registered and were sent up to the EEG area. He was still running around, sliding on the floor, and screaming to hear his echo. I honestly didn't think there was any chance he would fall asleep. We were called back and Jayden had to lie in a hospital bed and had about 20 or more electrodes attached to his head. He FREAKED out over having the electrodes placed on his head. It was so sad to watch. I know it didn't hurt him, but he just did not like it one bit. He would scream and cry and then remind himself that he was a big boy. Poor thing! After he was completely hooked up and had his head wrapped up, I was able to get on the bed with him and put his head in my lap. He screamed, kicked, cried, and pulled electrodes off during the first 10 minutes of the EEG. I told him that his wires were his spiderman webs and he said ok and settled a bit. He would whine every now and then but soon I saw his eyes get heavy and he quickly fell asleep. The rest of the test was a breeze. We won' get the results until sometime next week, so I'm praying or the best.

We got home and I put my sleepy boy in his bed and he immediately fell asleep. I took a 2 hour nap and got up to have dinner. Now Jayden is asleep, 30 minutes early after having a HUGE meltdown over bathtime. He drank his milk in bed and then told us night night. Went to bed without a fuss. Now it's my turn!

Busy Busy Busy

It's been extremely busy around here lately. As you know, Jayden's therapy has resumed, with the exception of occupational therapy. We are still waiting for him to be assigned to one and we may end up having to take him in to a clinic for his weekly OT. We will find out soon, hopefully. In the meantime, he's had two speech therapy sessions. The first one was a bit hard for him b/c he had to readjust to her coming with the fun bag of toys and then leaving before he was ready for her to take the bag away. The whole transitioning thing. This week, he did so well. He actually even worked with her and answered some questions and made animal sounds when asked. I was so proud of him but I try not to be "that mom" during therapy. LOL! As she was getting ready to leave, I could see him clenching on to a few toys from her bag and I knew he would not transition well, so I turned on Yo Gabba Gabba just before she left. He placed the toys in her bag and told her "Bye Bye!" Such a good boy and thank you Noggin for Yo Gabba Gabba! He's also had 2 sessions of behavioral therapy. The first was just a "getting to know you" type thing. This week she started the ABLLS assessment She was only able to get through half of the assessment this week and will complete it next week. Once the assessment is complete she will be able to get a notebook started for him so that we can work on the things he needs to work on both in therapy and at home. He didn't score as high as we thought he would have on some of the cognitive things, but we agree that it's mainly due to his attention span and hyperactivity, so it should get better once she starts to work on him with compliance. Towards the end of the session (well more like 20 minutes into the 1hr session) Jayden started to tear the room apart. Seriously tearing it up. Throwing toys around, emptying out containers and tossing the contents about, flipping chairs over, and just running around wildly. She tried to distract him with Barney, but that didn't work. She was completing his assessment and asking us questions about his development. I mentioned to her that he does this often, plays with toys for only a few minutes then he gets destructive. She told me that once she gets started on working with him after we know what goals he needs to meet, he will not be allowed to do any of that, so we will see. So far, she is doing what she is supposed to be doing with him so I can't complain.

Jayden also had his CT scan done on Tuesday. He was given a sedative, a medication used to treat insomnia, 30 minutes before his scan was scheduled. I recorded his reaction (20 minutes after he had the medicine):



It never fully slowed him down!! LOL! The tech wasn't concerned though. He was so very patient with Jayden. He rode him around on the table until Jayden was comfortable with the back and forth movements and jerking of the table. Then he held Jayden's head still for the scan. They ended up doing two scans and sent both results to the Dr. The Dr called that evening with the results. Nothing to be concerned about at all, but he did see that Jayden has sinusitis so he's on an antibiotic for that. Now we just wait to have his EEG done on Monday.

The house showings have picked up again. Stressful and tiring. I'm hoping that it sells soon. And as if I didn't already have enough on my plate, I signed up for online classes and they started on Tuesday! It's a medical biling and coding course and several of the credits earned can be transferred to my nursing school. What's scary is that I plan to return to nursing school in Jan, but this online course isn't scheduled to end until the end of Feb!! It's self paced though, so if I can stay on the ball and ahead of things, I may be able to finish it by the end of Jan, at the earliest. We'll see. Oh and some great news...My husband's last day of work is Sept 25!!! I'm so excited to spend more time with him...and to get more help at home with the house showings, therapies, drs appts, etc!

What a difference a complaint makes!!

So today was the day that Jayden was to begin ABA therapy and we were to meet with our new service coordinator through Early Intervention during that session. I had recently had the pleasure of speaking to a woman on the phone who introduced herself to me as our new service coordinator and she had a very nasty attitude. I, in turn, may have had an attitude with her as well ;) I was also in touch with the Board of Education and they let me know that they would be sending a monitor to this meeting to sit in and ask any questions. Also, my mom came along to sit in! LOL! So at 2pm, we arrive at the Child Development Clinic and the behavioral analyst comes out to greet us. As she walks us to the room, she turns to me with this look of concern and tells me that there is a monitor present from the BOE and she asked if I was aware. I nonchalantly told her "Yes, I knew." HAHA! Had her shaking in her boots. So we get there and I'm also greeted by a service coordinator who is NOT the woman with the attitude, thank you Lord. The lady we met seemed really nice and organized. She took notes throughout and asked me when he would be restarting his speech therapy (tomorrow morning) and OT. I hadn't heard from the OT yet so she wrote herself a note to call the OT to get the services started. I also mentioned to her about needing assistance transitioning him from Early Intervention into the St. Tammany Parish school system. She didn't hesitate to say that she could do that for me. She even wrote down the name of the school we plan to send him to. So, the first session of ABA therapy was basically just playtime for Jayden. I can totally understand her not wanting to jump right in on the first day so I wasn't bothered. The BA commented on how well he mimicked. He will basically mimic anything, but that's not considered language, so she just let him play and listened to any spontaneous words he would say. He said several and she picked up on them. There were several times though that he would say something and she'd mistake the word to mean something else. I just remained quiet so as not to be "THAT" mom. His speech therapist is much better at understanding what he says so I'm not concerned about that right now.She tried getting him to identify objects from flash cards but he pushed them away. He wanted nothing to do with her, just the toys. She would back off quickly when she saw he wasn't interested. Pretty much the entire hour was uneventful while he played but towards the end you could tell he was getting bored with the toys and ready to start getting destructive and throwing things. The BA showed me a sample progress report that she would complete with Jayden. Certain goals she would work towards with him. The monitor asked questions about his schedule and about his IFSP and the BA said that she wouldn't be able to update it until maybe his 3rd session with her b/c she wants to be sure what his goals need to be and since he is vocal and speaks, she doesn't think he's going to need much help. I told her, "Well that is the same thing the evaluation crew said last year in November when he was initially evaluated. Then once they truly started to work with him, the issues became apparent and here we are now." So she says she will definitely adjust his goals as she notices there are things he may need to work on. The monitor is going to return for the 3rd session. The monitor did end up leaving about 15 minutes before we did and when she left, the BA says "I didn't want to say this in front of her (the monitor), but I don't think you should send him to an autism school." I looked at her like WTF are you talking about?? Earlier when I was talking to the service coordinator about transitioning Jayden to the school system, I told her that I spoke with my friend in Louisiana who has 4 autistic children and she speaks highly of the school. Never did I say it was a school for autistic children. My friend I spoke with just happens to have 4 autistic children who receive the same services that Jayden is receiving. I told her "It's not an autism school, it's a regular school that does the IEPs for kids requiring special education services." Um, wow lady. She goes on to say "You don't want him to send him to school with kids who are autistic b/c he is clearly not and he will regress if he's in a class with non verbal students." OH MY GOD! That's why she waited until the monitor left. I am so sick of her view of autistic children all being completely non verbal. Has she not heard of asperger's?? Those kids generally have excellent language skills, yet they are still autistic. One thing I've learned in life (and throughout this fight with EI) is that people are all entitled to their own opinions and although I may not agree with the opinions, there are times that you just have to leave it be and carry on. I replied to her "he's not autistic speech" with "It's a regular school." No further explanation needed. To this point, she has not thoroughly evaluated Jayden the way his developmental pediatrician has, and like I have said on this blog before, I don't care what you want to label Jayden as, just provide the services that his Dr is requesting for him. So anyway, as we prepare to leave Jayden starts to get upset b/c it's a transition that he is not prepared to make. I mean, who wants to leave a colorful room filled with toys?!? LOL! So I make the huge mistake of ASKING Jayden "Do you want to clean up?" and he throws the container that the trucks belong in and falls out. The BA immediately scolds me! "You don't ask him, you tell him." Again, I zip my lips b/c I know full well that even if I said "Jayden, pick up the trucks", the same thing would have happened. She'll find out soon enough though. So as he's on the floor kicking and screaming and throwing the trucks around, she grabs his hand and makes him pick up 3 trucks (she actually picked them up and held his hand in hers at the same time) and was saying "GOOD JOB JAYDEN! GREAT CLEANING!" and Jayden was just kicking and screaming. Once she had the 3 trucks in the container she let his hand go. He immediately flipped the trucks back out though :/ I can totally get what she's trying to demonstrate, but lets be real here...I'm dealing with bad behavior every single day and it gets overwhelming. I can honestly say that I don't have the patience for that. Maybe I need to try harder. So as we grab our bags and are walking out of the room Jayden loses it and runs through the room screaming and knocking everything off of her tables. So I go to grab his hands and he throws himself under the table. So we all walk out of the room and she goes back and tells him to come to her. He grabs a truck and runs out. He's ready to go as long as he can keep the truck. The BA told us he can keep it and bring it back next week "since yall have a long walk to the car". HA!!

The new service coordinator walked with us to the parking lot and she told me that she would be in touch with me and she will try to make it to the next meeting next week to stay on the BA to get the IFSP updated for Jayden. She also wants to monitor Jayden's progress with this BA b/c she caught on to her "he doesn't really need this" attitude as well. Of course, the two times she's met him he behaved well, but once she starts to add any structure to his sessions, she will have her hands full and hopefully understand why I go to bed in tears very often. As far as her opinion on what is and isn't autism. Well, it's just her opinion.