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!!!!

Can't help but worry a little...

For the past 2 months or so, Jayden has been having a really hard time falling asleep. We put him in bed every night at 8:30 and he goes without a fight, but it takes him a while to finally fall asleep. Usually at 10:30, 2 hours after getting in bed, we still hear him in his room moving around in bed and humming. Some nights I still hear him close to midnight! I wasn't really worried about it then b/c I figured he's just not too tired by 8:30 anymore and that eventually he'll start to fall asleep sooner. Well, now he can't seem to stay asleep. We've had 3 am awakenings at times and I can go in the room and tell him it's still too early to wake up and he'd eventually go back to sleep. Well, for the past 2 weeks, he's been waking up for the day at 5am. There's no convincing him to go back to sleep at least until the sun comes up! He doesn't cry or even get out of bed when the sun isn't out yet, but he's awake by then and can't seem to fall back to sleep. Now, Jayden has always been a great sleeper. By 3 months old he started sleeping 12 hours at night and that continued up until now, so I could just be spoiled by having a good sleeper. But what concerns me is that he has gone from sleeping 12 hours a night to sleeping 6 or less, which is not okay. During every evaluation Jayden has ever had, we've been asked if he sleeps through the night. We always say "OH YES! Never have a problem with that." But now, I think that's changing. My concern is that something may be happeneing in his sleep, neurologically, causing him to wake up and not be able to fall asleep again. Also, last week at behavior therapy, he stopped in his tracks on the way to the therapy room and clenched his arms and started trembling. It lasted all of 10 seconds and then he was running again. I figured he was just being silly but the therapist was concerned b/c right after he had a limp and his right foot was turned in when he walked. Shit. We always noticed his foot turned in at times and he walked with a limp at times, but it was never ALL THE TIME, so now I can understand her concern. Well, he did this again at the neighbor's little boy's birthday party yesterday. He trembled, this time a bit longer, then started liming but kept on playing. However, he got irritable and no longer wanted to be around the other kids.

I want to believe that I'm just looking to deep into things since I know that he had an abnormal EEG and have to wait until Nov 11 for an explanation for this. Now, of course, we pick a part every weird thing that Jayden does. But this significant change in sleep pattern and the trembling and limping are just causing me to worry a little. I am going to keep a journal now until his appt, to have this info to give to the neuro, but until the 11th, I'm not sure there's much more I can do. So until then I'll remain worried...and EXHAUSTED!!