Seizures, complaints, evals, and comments

I haven't had time to update, so this post will contain some of it all!

First off, Jayden was evaluated for both the Rankin County (MS) school system and St. Tammany Parish (La) school system. Rankin County took place last Friday morning. Jayden actually only showed a delay in speech, and tested normal in all other areas. We were not surprised b/c we know we have a very smart, independent, observant little boy. However, in Rankin County, he has to be delayed in at least 2 areas in order to continue therapy through the school system. Jayden would be eligible for services in the school system due to his diagnosis, but the evaluation was to help us know what he would need assistance with. So I think the counselor was a bit concerned to see him only show a delay in speech. As we were discussing that, Jayden was with the SLP and she attempted to transition him from one activity to another and I believe he was just overstimulated by everything going on and he exploded. He started with his high pitched scream and ran through the room flipping over every single chair. I stopped him from flipping one chair over and he punched me then ran over to the LONG table the was filled with items and he swiped every single item off of that table and then punched the counselor who was trying to calm him and ran to the door and started beating and kicking it. All of this while screaming and it all happened in about a minute. He continued to scream and kick on the door b/c he was ready to go and he wouldn't calm down. Finally, we moved him to a room right next door with a little bike, for a change of scenery and he calmed down immediately. Now, the counselor looked at her eval form and was circling answers to about 12 questions without even asking us. She told me that she had her answers just by watching what had just happened and that he definitely will need behavior therapy. Funny, how just the week before his BEHAVIOR therapist told me that he didn't need the therapy. She just has yet to see what happens everyday. So we are waiting to hear back from Rankin County and to meet with the team of people who would be working with Jayden should he start school out here. But, honestly, I am going to avoid that at all costs simply b/c I do not want to go through, with the school system, what we are going through with EI.

Tuesday morning, he had his eval with St Tammany Parish. He walked in there on edge, so they got to see everything from the minute we walked in. He was first seen by a child psychiatrist. She asked what our concerns were and I told her mainly his behaviors. She asked what type of behaviors and he showed her. He screamed at her each time she told him to do something. She asked him to stack some blocks and he screamed at her and swiped the blocks off the table. He continued to knock them off each time she picked them up and then he threw them at her and tried to hide behind Mike's chair. She made Mike push the back of his chair against the wall so Jayden couldn't hide and Jayden tirned and faced the wall instead. She finally got him to come close to her by building a train with the blocks. He sat down next to her and played with the "train" but moved away from her anytime she even lightly touched her. From there she was able to see that he would benefit from behavior therapy and occupational therapy in the school system. Next he had his gross motor skills tested and of course he passed that with FLYING colors. They did a speech screening and did confirm that he's average with his receptive speech but delayed with expressive. Also, they needed detailed info on his health conditions. In the end, they told us that he would more than likely have behavior therapy, OT, ST, and even a nurse due to his celiac disease and seizures. He will have a complete evaluation by each individual therapist prior to entering the school system to determine his delay and the goals he needs to meet. I have to say that I was very pleased with that appt and I feel comfortable with them b/c they seemed to pick up on EVERYTHING without me saying anything.

Wednesday, we had his first behavior therapy session since I filed my complaint. Jayden's caseworker came to sit through the session to observe. The therapist arrived and immediately started trying to engage Jayden. He wasn't in the mood b/c he hadn't had a nap. She tried getting him to sit down and do flash cards, but he wouldn't and he kept flipping the chair over instead. Usually, she would just let him flip the chair and then go about his business until she could con him back to the chair with candy. This time, since I mentioned in the complaint that she doesn't work on his behaviors at all, she followed him when he ran off and carried him back to the chair and made him pick it up. Jayden was so upset b/c he is so used to her just being the "fun, candy lady". He actually even calls her "Candy". So to have her to all of a sudden change gears was probably frightening to him. She should have been addressing the behaviors all along though. So anyway, he continued to be naugthy (although it was NOTHING compared to what he could do. This was just exhaustion and frustration) and she continued t bring him back and correct him when he did something wrong, but I could tell it was VERY awkward for her. She eventually just sat back and sighed and said "It's honestly best to just ignore this as much as possible." To which my husband replied, "How do you ignore this (kicking, screaming, breaking things) in public?" She said, "Honestly, I have no idea what to tell you about that." There. She said it. She admitted that she doesn't know how to deal with behavior problems. She does so well with learning disabilities, but my son doesn't have a learning disability. He has a behavior problem. So she can't help him. I can accept that. What I won't accept is her telling me (and his other therapists) that he doesn't need the therapy. Her advice for home was, "Can you put him in his room and close the door until he calms down. Maybe he needs the escape." I told her, I can put him in his room but only if I want him to pull down the drapes, break his furniture, possibly the window, and hurt himself. Sure I could put him in the room, but I love my child and I don't want him hurt over his behavior that he obviously cannot control. The caseworker then chimed in and said "What you saw today is MINOR." and she went on to tell the therapist how he behaved at the school eval. Then, of course Miss I don't agree with Jayden's diagnosis asks, "Did he qualify for help in the school system? The caseworker told her that he did qualify for speech and behavior. So then she asks, "Well did you get his scores back b/c I would be interested in seeing how delayed he is in speech, if he is at all." You know what? When I do get his scores back, she can believe that she won't be seeing them b/c I doubt if she will still be coming to my house b/c I've had it with her attitude. If you don't agree with my son's diagnosis, fine. But don't constantly come to my house and go against everything that we're being told. It has taken us long enough to have closure with this and move on to getting him the help and care he needs, so I don't need her coming here telling me that there is NOTHING wrong and that it's "just us".

Wednesday, Jayden also had his Neuro appt. Basically, the Dr confirmed that Jayden's EEG was indeed abnormal and that he needed to be started on antiseizure medication. I told him that we've seen Jayden stare off into space, tense up and look spaced out during a tantrum, and also just look spaced out for a few seconds, but never have we seen him behave in a way that we can certainly say he's had a seizure. The Dr said that he could be having seizures all day long that we just are not seeing, but there's also a chance that he's not having seizures at all and the abnormal brain waves could be from something else. So he ordered an MRI and another EEG so that he can read the results himself. He told us that at this point, since the EEG is abnormal we need to treat the EEG. But he wants to find out WHY the EEG is abnormal so that he can treat Jayden, specifically. For now, he is on an antiseizure medication called Trileptal. We have to slowly get him to his proper dosage of 5ml in steps. He takes 1ml twice a day for 3 days, 2ml twice a day for 3 days, and so on until we reach 5ml. I do believe we will have to wean him off of the meds again for his EEG. I'm calling the nurse about that on Monday. Today is day 3 on the meds, and I honestly see a difference in Jayden already. Last night, he stayed with a sitter while we went to dinner for my husband's retirement. After dinner, we called to check on Jayden and the sitter said that he had fallen asleep. This is unheard of for Jayden, to fall asleep when he isn't at home in his bed. He actually crashed on their couch. When we picked him up, he was so pleasant and he had no problem going back to sleep once we got home. And today I let him skip a nap since his Nana and Papa were in town. He was so well beahaved. We even had lunch before my parents left and not a problem out of Jayden. Then we went to Toys R Us to do some birthday and Christmas shopping. TRU was a madhouse, but Jayden handle it so well. Not one problem out of him. And now we are home and he is being so calm and well behaved. I do think that it has something to do with the meds. We will see! Especially when I wean him off b/c if the meds are helping to calm him, he will get very irritable when we wean him off.

So that's an update. I also wanted to mention something that offended me Wednesday evening. Ever since we started to notice that something just wasn't right with Jayden, we've been getting comments from family and friends (even strangers) about how he's "just being a boy", it's a phase, he just needs a spanking, he's spoiled, etc. But of course, you all know that I always went with my mommy gut. I'd be lying, though, if I told you that these comments do not make me feel like a paranoid, over protective, first time mom. Also, I admit to being a control freak, so sometimes these comments make me question myself and if I am just wanting my son to be perfect. On Wednesday evening (yeah we had alot going on that day!), we went to a Veteran's day gathering with some of my husband's military buddies. I was sitting at a table with some of the wives and Jayden was in my lap. He still had his bandage on his arm from his blood draw that morning and one of the wive's asked me what happened. I told her about his appt and she asked me about his seizures. I told her I hadn't actually seen what one would expect to see during a seizure, but he does starte off alot and get glassy eyed at times. She said "Please, I stare off! That's normal." I didn't respond. Why do I need to respond? He has an ABnormal EEG, proving that something is not right. She goes on to say how he's just all boy and everything he's doing is normal. I'm so glad that I never let these comments about what's normal and what's not stop me from fighting for my son. Had I listened to those comments, that him not eating or screaming at the dinner table was normal, I would still be stuffing gluten in my baby's belly and tearing apart his intestines. Had I listened to the comments that his out of control behaviors were simply b/c he is a boy/spoiled/needs a spanking, we wouldn't have had an EEG done and wouldn't be looking further into why that EEG was abnormal. I know that these people are only trying to be supportive, but I'm so thankful that God blessed me with the Mommy instinct to know when something is just not right. Thank you God.

Complaint #637...

Seriously though, I don't think I should have to file a single complaint with Early Intervention. They should just do the job they are supposed to be doing and mainly, I think they need to be careful when choosing their contracted providers. This complaint just HAD to be filed though because it was going a bit too far...

To refresh your memory, check out this entry. From there you will see that the behavior analyst disagreed with the Developmental Pediatricians diagnosis from the very beginning and she just can't seem to put her opinion aside and provide the care that she is supposed to be providing for Jayden. Instead, she seems more focused on proving why she disagrees with the diagnosis. Last week she took it too far though. At the beginning of October, we asked her to switch his services from the clinic, to our home environment because we were still struggling with the behaviors but she had yet to see any in the clinical setting (play room FILLED with new toys). She agreed. She came the following week and only stayed for 15 minutes of what was supposed to be a 45 minute session. The following week, she cancelled 15 minutes before the session was to start, saying that she wouldn't be able to get out of her office on time. So really, no real excuse to cancel the session. She came last week and stayed the duration of the 45 minute session, but spent most of it telling me that he didn't need ABA therapy "because I work with kids on the spectrum and we never get as far as I've gotten with Jayden." To that I replied, "We have not addressed his behaviors and that's my concern." Then the finger pointing started. She said that maybe his speech therapist is boring. That his OT should be doing more behavior stuff with him. And this is the one that pissed me off...She asked if he gets into trouble at MMO. We told her no (but found out Monday that he has been getting into trouble) and she said, and I quote, "Well, it must be something about you two." I swear my face turned red. I wanted to tell her off right there, but I held back. I did say I don't believe it's just us and that the behaviors need to be addressed. Jayden ran to the potty at that moment and couldn't get his underwear down on time so I had to go help clean him up and she used that as her que to leave. I had no closure and she didn't tell me what her plan for the next session would be since she felt he didn't need the therapy. I just knew that she wouldn't come this week. So yesterday, 3:13pm, my phone rings. It was the clinic and I was tempted to pick up the phone and say "Are you cancelling again?" but I didn't. It was the receptionist from the clinic saying that the therapist called the clinic and told them to let me know that she wouldn't be doing home visits today. No reason why, just that she wouldn't. And when she cancels, she never makes up the missed session, so it's just a lost week. To me, it seems like she is not taking Jayden serious b/c she doesn't agree with his diagnosis. I said in my post above, that I would deal with her as long as she provides the service requested. Well, at this point she isn't, so I cannot deal with her or have her wasting my son's time. I filed the report yesterday and got a call this morning from the Dept of Education. The lady basically said that she is the only person in the state that does behavior therapy so they spoke with her and she told them that she is willing to come to my house at the scheduled times along with the speech therapist, so that she can show the speech therapist how to work with him. That's BS. I told the lady that the behavior therapist has not touched his behavior issues. Instead, she points the finger. All the lady could tell me was, she's the only person they have. This is why I have to get out of MS. After the phone call with the Dept of Education, Jayden had speech therapy. He did fine until the therapist showed him a picture of a camera and he is obessessed with my p&s camera so he ran to grab it. We decided to let him take a few pictures with it and he would name everything he took pictures with. Then we needed him to move on b/c he started to get destructive with the camera. I tried to make a switch, the camera for his headphones which he usually LOVES, but he was not ready to transition. He threw the headphones, ran through the living flipping his chair and table over and swiping everything off of the coffee table, all while screaming like a banshee (and I know my neighbors heard this). Then he ran to his room. The BA once told us, when he knocks something down make him pick it up. That doesn't always work and today was an example. I literally had to DRAG him to the mess and tell him to pick it up. He screamed and flailed his body around, knocking down more stuff. So the speech therapist said, let's try hand over hand. So I took his hand in mine and made him "pick" up the mess. He balled his hands in fists and continued to kick and scream and hyperventilate, while I'm pretending that he's really picking up things and making me proud. Let's be honest here. I cannot deal with that 24/7. I need help with those behaviors. I don't know if the BA is skilled in working with that b/c she only focuses on learning and ignores the bad behaviors or distracts the kids with candy. Jayden is unpredictable. I'd literally have to have him eating candy all day to (hopefully) avoid a tantrum b/c once it happens, even candy will not pull him out of it.

Jayden's caseworker called me today to check on us since she'd heard about the complaint. When I told her the the BA said about my husband and I being the problem, the caseworker was just as pissed as I was. The thing is, I have a 10 page long evaluation of Jayden from the Dr, explaining all of the findings and a diagnosis, along with plans of action with one being behavior therapy. In my opinion, there is no reason for the BA to disagree with the diagnosis unless she can show me a 10 page report with opposite findings on my son. Otherwise, she has no case. The speech therapist actually cannot change her schedule, and I'm actually glad about that b/c the BA is trying to call all of the shots here. So I don't know what her plans are for next week, but Jayden has an appt on Wednesday in New Orleans for his seizures and I do not plan to rush n\back to Jackson for his therapy b/c chances are she will call at 3:15 and cancel again...why? Because he simply "doesn't need it".

For Miss Lou...

Or as Jayden calls you, "Woo Ahn"

I want to thank you for being the best therapist, in my (and my husband's) opinion, on Jayden's team. You are so passionate about your job and show your concern and love for the kids you take on. You've done more for Jayden in 6 weeks, than the other therapists have done in 1 year. You never let Jayden's "off days" or unnecessary roughness get in the way of helping him to achieve his goals. If something doesn't seem to work the way we expected it to, you tell me that you will "go home and brainstorm" and you honestly do just that. At the next appt, you come armed with more information and advice. I know that you are sad that Jayden will have to transition out of EI next month and I know that you would love to continue working with him, and we feel the same way! We will miss you terribly, but you've equipped us with TONS of knowledge and items to help Jayden out with his sensory issues. Thank you so much for the countless handouts, developmental charts, the copy of the Sensory Smart Child has Fun, the ear plugs (for Jayden folks!!), and the noise reduction headset (again, for Jayden although I did put them on today during a tantrum!). Finally, I appreciate the way you offered to step up and help with his behavioral issues, even though it's not what you are trained to do. That's called going above and beyond and I thank you for it.

So, Miss Lou Ann, we LOVE YOU and we will miss you when Jayden transitions out of Early Intervention next month, but I thank God for sending you our way for the short time that He did.

Really??

I think my son may be potty trained!! Well, I won't say 100% b/c I still put a diaper on him at night, but doesn't that take a while for all kids to get the hang of, waking up at night to use the potty? Also, since he is so independent about it (doesn't tell us, he just goes on his own...and slams the door in our face if we follow him!), I'm not sure how he will handle things in public. But I guess I can safely say that Jayden is 90% potty trained in only 6 days?!?! He actually woke up this morning and tugged at his diaper and said "Buzz" b/c he wanted to put on his Buzz Lightyear underwear. And just a few minutes ago he was playing in his haunted house we built for him yesterday and then I heard him calling to me from the bathroom, "Mommy!!! YAY!!! MOMMY!! YAY!!!!" And there he was, sitting on his potty and it was filled with pee! My kid is so smart and I'm so proud!!

Day 4

Wow. So far so good! He had school (MMO) this morning so we put a diaper on him. I know the books say not to do this b/c it will confuse them, but he cannot verbalize the fact that he has to go, so we have no other choice until he learns to use the sign consistently or learn to tell us that he has to go. So anyway, he wore the diaper at school and then during a nap. After his nap, we took the diaper off and put on his Buzz Lightyear underwear. He did wet them a little, but we could tell that he felt himself getting wet and he stopped. We took the underwear off and let him run around with just his tee shirt b/c I kind of figured that he was wanting privacy, but didn't quite know how to pull his own underwear down yet. Well about an hour after I took off the underwear, he roamed into the hallway, so he was either going to his room or to the bathroom. I called to him (b/c it's not wise to let a naked, not quite potty trained, toddler run unsupervised through a house that you are trying to sell)and he said "Yes???" and came running back into the living room squealing "YAY!! I DID IT!" We totally thought it was a fluke, but sure enough he peed in his potty, all by himself. I think when I called him, though, I disturbed him b/c he had some on the floor as well and then about 5 minutes after that he went back to finish, without anyone telling him to go. So he just walks into the bathroom and sits on his potty when he has to go :)

But here is the BEST part! I didn't expect to have any luck with the bowel movements due to his celiac disease and the fact that he needs a daily stool softner to help him go. Add to that, the fact that he hadn't had a bowel movement since last week on Wednesday, so I wasn't expecting him to be able to do it in the potty. Well, he kept grabbing at his butt and running to the bathroom (SO FUNNY!!) and we would peek in on him and see him sitting on the potty, but then he'd get up and come back in the living room. This went on for about 45 minutes. Next thing you know, I'm on the phone with my sister and my husband is on the phone with his mom and he (my husband) says "Oh mom, I have to go!" Jayden was in the bathroom handling his "business"!! He had also "attempted" to wipe himself and clean up the little mess he made on his way to the potty, but we were so happy that he did this all by himself!! He got TWO lollipops for that! Now, I do still expect the bowel movements to be a bit tough for him b/c it was obvious by the mess in the bathroom that when he has to go he has to go NOW! And he can't hold it. But he gets the point and that's what matters. I'm so very proud of him and he may be out of diapers by the time he's 3 after all!

Potty Training

So, we know it's time to ditch the diapers. Jayden will be 3 in December and most (I think ALL) of the kids in his social circle are out of diapers by now, and they are all boys so the excuse "boys are harder to train" just won't fly! LOL! We are expecting him to have a hard time with bowel movements due to the fact that he has to have a daily stool softner and even with that, he only goes 3 times a week and he can't seem to control it so we will have to see how that goes, but we won't rush him.

So our intentions were to start him today, 3 days of no pants or a diaper. He actually woke up Thursday morning (I was still in Slidell at my parents and he was home with Daddy) and said "pee pee". My husband thought that he wantd his diaper changed so they went to Jayden's room to change him but Jayden started crying and crossed his leg. So my husband sat Jayden on the toilet and Jayden said "3 2 1..." and peed,and then yelled "YAY!!!" So yesterday after his nap, we went to walmart and let him pick out some briefs (He chose Toy Story) and even though I highly despise potties, we got him one that plays music whenever he pees in it. We want to make it fun for him, so I need to forget about my disgust for those pots and do it for him! Today, he had ZERO accidents and peed on the potty twice. He seems to be holding it until his bladders hurts him though so hopefully he gets used to the idea and this won't become a problem. I do sit him on the potty once every 30 minutes even if he doesn't ask, just to try. He also took a 3.5 hour nap today (in a diaper) and woke up dry! Day 1 was definitely successful!

Awakenings

4am this morning. Well, actually, I heard him tossing and turning in his bed at 2:30am. I was so tired that I just went back to sleep though. At 4am, I heard him banging toys together. SIGH. I went to his room and the toys were all over. He was having a ball. At 4 (FOUR!!!) am :( I told him to go back to bed and he said "Ok" and climbed back in bed. I immediately removed all of the toys. I attempted to go back to sleep, but it's very hard for me to fall asleep especially when my husband is in bed snoring. So I was up, and guess who else was?? Yep, Mr. Insomniac. I watched him on his monitor and the poor thing was trying really hard to fall asleep but he couldn't. He tossed and turned. Tried one end of the bed, then the other. But he never went back to sleep. So, last night he fell asleep at about 10pm and he was up for the day at 2:30am (maybe even earlier). So he only had 4.5 hours or less of sleep. He had MMO this morning and I was going to just keep him home so he could sleep, but the child NEVER went to sleep! When we went to get him out of his room he was bright eyed and ready to go, but he did stay in bed until we went to get him. So he's at MMO now and judging by the way I feel, I can only imagine that Jayden must be tired!!

Now, I have completely cleared his room of toys while he's off at school this morning. I went through his toy drawers (3 plastic drawers on wheels from walmart) and threw out the broken toys and the ones he no longer plays with are going to goodwill. I put the toy drawers in the living room. I took the train table out of his room as well. No more toys in his room. However, I honestly don't think the toys are the reason why he wakes up in the middle of the night and can't go back to sleep. He's had those toys in his room for over a year now and we've never had this problem. Besides, when I took the toys out of the room at 4am, he still couldn't fall back to sleep. It seems as if something is waking him up out of his sleep and then he's just too wired to go back to sleep no matter how hard he tries. So, just like any other person, he gets bored laying in bed with his eyes open so he plays with his toys. I just don't know what's going on with him or what to do. I feel sorry for him. I know a child should not only get 4.5 hours of sleep. Nothing has changed as far as his bedtime routine goes. He still gets his bath and warm rice milk right before bed. We brush him (sensory), read him a story, turn on his sound machine, and say good night. He's been to the Dr for his eye (allergies) and they said his ears were clear, so no ear infection. These sleep issues have been going on for over a month now though so I just don't know. What I do now is that I am TIRED!!!!