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.

Mr. Polite

I often wonder to myself if I've not done a good job at raising Jayden b/c of his outbursts and how he does not liten to us in public. I know I can't blame myself, but honestly, it's hard to not think of what it is we should and could be doing differently. I always say "I want to raise my baby to be a respectful young man." Well, I think I'm on the right track despite his behavior issues.

He has been such a polite little 2 yr old lately. He tells us good morning every single morning. He tells complete strangers thank you when they hold doors open for us. He asks the waiter or waitress "How doin?" when they walk up to our table. He also says thank you when they deliver his food or bring refills. He runs up to crying babies and asks "Okay??". He says bless you when he hears someone scream and thank you when we bless him. He also says thank you whenever I kiss a boo boo. My husband and I did not sit down and teach this to Jayden. But it's what we do around him. We model politeness and he pays attention and picks up on it. I love it when I go someplace and someone tells me just how polite my little man is. We both leave saying Thank you!

Please God.

First of all, for the first time in a long time, I feel like I owe myself a pat on the back. This morning has been BEYOND stressful and everything that could go wrong has gone wrong, yet I have been able to keep my cool. Jayden was supposed to go in for his CT scan this morning. He woke up VERY cranky, so I guess I expected it to be a rough day and I immediately became concerned about the CT b/c there was no talk about any type of sedative for him. The pediatrician prescibed a medication that is supposed to help him if he's having headaches and supposedly has a calming effect as well to keep him from getting upset for us to use as needed. I brought it with me just in case b/c I knew he wouldn't lie still for the CT. We get to the radiology center and I'm greeted at the front desk by the receptionist who tells me that they are not in our network for the ins and they cannot do the scan. We just drove 20 minutes to get to the place and Jayden was on the floor screaming. She told me they could send us to another place today that was in our network. I asked if she could send me to someplace that was near there since we'd already drove out there. Jayden had a horribke tantrum, eyes turning red and all, over what I don't know, but I just waited for it to be over and then gave him his blanket and sat him on my lap. I'm so proud of myself for remaining calm. So she gives me mapquest directions to another place that is 20 more minutes away!! Further from my house. I was so distracted by Jayden and just generally frustrated b/c of the situation. We drove the extra 20 minutes. Got into the clinic and had to sign in at registration and pay a $25 deductible. I wrote a check and she sent me back to radiology. The tech asked me if I thought Jayden would lie still. I gave the most honest answer I could. "No." So he says, without pause, "Well we won't be able to do his scan." So I went on to say how I don't understand how anyone can assume a 2 yr old will lie completely still while awake, especially in a strange environment. He tells me that several 2 yr olds lie still and that if Jayden can't lie COMPLETELY still he won't be able to do the scan. So forget about the 30 miles of gas I just wasted, or stress I just put my child through by dragging him in and out of the car. I decided to try the meds the Dr prescribed. I gave him some and we went to wait in the waiting room to see if it would calm him down. Jayden hopped, skipped, jumped, spun around in circles, everything but calmed down. So the tech comes out and is shaking his head "no" saying it's not going to happen. So he tries again to get Jayden to lie on the table. My poor baby was trembling and actually saying that he was scared. That's scary for a 2 yr old!! So the tech calls Jayden's pediatrician to let him know that it's not happeneing. The pediatrician told the tech that I could give Jayden a double dose of the meds he prescribed to try and calm him for the CT and if that doesn't work then he will have to reschedule and have the scan done at the hospital with sedation. Well, I didn't like the feeling I had when I gave Jayden the first dose, so I damn sure wasn't about to give him a second. I said screw it, I'll just wait for it to be rescheduled. So we drive home and Jayden is calm for the ride home but once we get home it's another story. He's screaming at everything and just in a foul mood altogether, probably b/c he was late for his nap. So I fed him his lunch and then as we were going to his room for nap time he had a fit. It started out as a crying fit, then as I was changing his diaper he starts with the growling and tensing up his body. This went on for 10 minutes. I had to put him in his bed and turn out the light b/c he was hurting me and I didn't want him to hurt himself. He finally was able to calm down and I think he's asleep now.

Please God, just help us to help him.

What's that they say about the squeaky wheel??

Well, this morning I said a prayer to God that He would tame my tongue b/c I was really ready to just let loose on someone when I remember that Jayden has been without service since April and we are quickly approaching the 4 month mark. 4 months he's been without services he needs for his development! I've called and have been getting promises that someone will call me asap with a start date. His services will start next week. BLAH, BLAH, BLAH. But nothing happens. No one calls. And he still is not back in the system yet. Well they say he is, but he's just kinda hanging around. So, it really just pisses me off at this point b/c once he turns 3, he won't be able to get these services. He'll have to get them through the school system, which will be incredibly stressful for him since he hasn't had early intervention. So I called his case worker, who promised me that someone would call me YESTERDAY to give me his hours for therapy (no one called of course), but she didn't answer her phone and still hasn't returned my call. So I immediately called the board of childhood education. I had alreay been in touch with them before so when I told the lady who I was, I could hear the disgust in her voice when she found out that Jayden is STILL not getting services. She said "Let me make a phone call and I will call you right back." Then I PERSONALLY called the behavior analyst, who made a promise to me 3 weeks ago that she would call me in 1 week to set up something for Jayden's behavioral therapy, yet she never called. She answered the phone at the clinic. I told her I was calling about Jayden's services and of course she said "I was just gonna call you in a few minutes!" So she asked for the name and number of the lady from the special needs insurance coverage through Tricare so that she could find out what they need to complete to get paid for Jayden's services in case he needs more than 1 hour a week. And she said that she will start working with him next week. I'm not holding my breath b/c this has gotten ridiculous with all of these promises to call and start therapy yet nothing has happened yet!! I'm sick of it.

As I was hanging up with her, a call came in on the other line and it was the dept head from the board of education. She was pissed. First she apologized for what was going on then she told me to file a complaint. Of course I'll file one. She told me that first of all, even if they ran out of funds back in April, Jayden's services should not have been cancelled. There should have been another option for him to continue to get services. Instead, they just sat his paperwork aside. She recommended that we get a new case worker, so that's in the works right now. She then told me to look at his plan of action for early intervention. It only listed speech therapy as the services he rec'd which of course was not true. The OT was added in Jan and the plan should have been immediately updated and I should have gotten a copy of that legal document. She also told me that since Jayden has lost out on 4 months of therapy, they are obligated to make it all up, so she's sending a monitor out to the next evaluation to make sure that this is set up and that the plan of action is updated correctly. So there will be 2 monitors at the next eval b/c my mom is very pissed and will drive out here when they decide to come. And I do pray they are smart enough not to question my child's diagnosis with my mom in the house b/c oh boy will they see an explosion!! She is ready for action! The dept head asked me about getting Jayden prepared for the school system. I told her that after all of the trouble we've had with EI, there is no way I'm sending him to any school system here. She sighed and apologized greatly. It's not her fault, I know it. And I do know that the school systems could possibly be so much better at what they do, but this is my child's future at stake and I'm not willing to risk it. I just have no hope for the state of MS when it comes to helping kids with special needs.

So now, I search for my complaint form, wait on a call (that probably won't come through) from the behavior analyst, and wait for the call from the therapists to schedule the meeting to restart his therapy services. Since he's missed out on 4 months, I imagine our days will soon be consumed with make ups, but I won't even begin to sit back and relax until they are officially starting his services again. Their word is no longer trustworthy to me.

For you, Jayden

This morning, Jayden and I went to library storytime. He was so happy to be there and was SO well behaved! He even came to sit in my lap for most of the hour, which was a first. He saw Miss June pull out the basket of books during independent play time and he ran to her and followed her to grab himself a book. I had to fight back the tears as I watched my little, precious, innocent boy following her for his book. I thought of how his behaviors have completely overshadowed his innocence. How often have I come to this blog to talk about his sweetness? I know I do it, but not as often as I'd like, so Jayden, this blog post is just for you!

I love that you named your blue blankie, Wayne. Everyone in the family knows who Wayne is and knows that if Wayne is left behind we will make a u turn immediately to get him. I also love that you now know when you need Wayne around and when you don't. My heart melted when we pulled up at Nana's house and as I took you out of your seat, I offered you Wayne and you immediately said "No!" and ran into Nana and Papa's house. Wayne spends most of his day in your bed now and mainly gets his love from you around naptime and bedtime.

I love that you are so in love with letters. You can say and identify your alphabet, written and in sign language. "E" is your favorite letter to sign and you do it perfectly. I also love when you sign the letter "F". And today you surprised me with the sign for elevator when we walked past one at the Dr. You are so incredibly smart!

I love that you love Michael Jackson's music and can sing along with a few of them! Everyday, you seem to learn new lyrics. Today you made us laugh with "Black or White"!

I love the way you say "Okay". If I tell you you can't have something, you put your head down and say "Ooo tay." MELTS MY HEART.

I love how you just came in my room and told me you love me, then proceeded to grab my nose and say "Ewww!"

I love how much you love your big cousin "Gi Gi". I am so happy that you two are so close and I hope to see it stay that way.

I love how you walk on your toes. I've been told that it's sensory and with some therapy you should do it less and less, but I secretly hope that you still do it from time to time!

I love the way you yell "Ewwww!" and scrunch up your face whenever anyone, including yourself, puts their feet too close to your face!

I love how you yell "Help me" whenever you need anything. And then you politely say "Thank You."

I love it when you tell complete strangers "Thank you" when they hold a door open for us.

I love the way you hug me really tight around my neck and kiss my "boo boos". I never tell you that my "boo boos" are actually acne b/c I would much rather them be called boo boos :D

I love how you make sweet eyes at us when you see something you want...it's usually candy, and 9 times out of 10 you get it b/c who could resist your sweet eyes??

I love how much you are into taking pictures lately and I love this very last picture of you from our Orlando vacation. You asked for a "pid dure" and made this face!



Jayden, I love you so much!!!