I've been meaning to update for a while now, but we have been very sick in this house! Jayden is getting over his very first double ear infection and I am getting over a terrible sinus infection and bronchitis that never completely went away from last month. The fact that I am able to open my eyes and actually sit up and type this updates means that I am feeling SO MUCH better. My house is very happy about that. Let's just say that if Mike was a bachelor, he would not keep a clean house!
Anyway, Jayden was accepted into the school system for additional therapy once he ages out of EI next week. The main reason for his acceptance: Autism. He had several small tests done on him during the eval including speech, cognitive, gross/fine motor, and social emotional, along with a GARS-2 eval, which is a screening done to show if a child shows signs of being autistic. Scores or 85 or higher means that the child is "very likely to have autism". Jayden scored 96. I wasn't surprised but my husband is still grasping at straws and hearing the behavioral therapist say, time and time again, that he is just not autistic, gave him the straws to grasp at. He's also been told that as Jayden gets older, the behaviors will disappear. That's not always true in a child who is diagnosed at such an early age. Truthfully, as we see some behaviors fade away (the headbanging), we will see new behaviors show up (lack of eye contact). The silver lining of it all is that, while Jayden does exhibit extreme autistic behaviors, he doesn't seem to suffer from any of the learning disabilities associated with autism. This is a positive and a negative thing for Jayden though. Because he is so bright and social (he is VERY social as long as he can control the surroundings) people will just tend to call him a "bad, spoiled child" when something sets him off and his behaviors spark. That's difficult for me b/c I know that there is a reason why Jayden does the things he does, and in my mind, I feel like once you accept that he is who he is for a reason, then it will be easier to deal with those behaviors. If people continue to view him as the bad child, he will continue to be pushed into situations that he just cannot handle and he will not be able to progress. So, if me helping my child to cope with what I know is a stressful situation to him is considered me spoiling him or babying him, then so be it. I know that he finds comfort in it and that's my job as a mother, to comfort him.
He has one more appt with his behavior therapist prior to exiting EI. She told me that he wouldn't get accepted into the system b/c his speech isn't delayed and b/c he has no social issues and b/c he is CLEARLY not autistic. Well, he tested at a 24 month level in speech and social, a year behind where he should be. I guess someone needs to stick to what she knows and it's obviously not child development.
Showing posts with label early intervention. Show all posts
Showing posts with label early intervention. Show all posts
Tuesday, November 24, 2009
Thursday, November 5, 2009
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".
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".
Wednesday, August 19, 2009
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.
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.
Tuesday, August 11, 2009
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.
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.
Tuesday, April 21, 2009
July
The EI coordinator called me today. She said "Hi Mrs.Johnson. I was calling to let you know that your therapists will not be coming out to see J this week."
You don't say?!?! They come on Mondays. Today is Tuesday. Even if they didn't call me, I think I'd have figured it out by now! I didn't tell her that though...hehehe. Just thought it! I told her that I spoke with his therapists and they explained the lack of funds issue. She then asked me if I had thought of any alternative routes for J temporarily. I asked her if there were any non contracted therapists through First Steps that would be willing to see J, but she said not at the moment. Unfortunately we cannot afford to pay out of pocket for the sevrices, and I have no idea why they are so dang expensive in the first place?!?! So no. I have no alternative. The good news (I guess??) is that they will pick him back up in July once they get their yearly funds. I asked her if she was certain that J would be picked back up and she assured me that he would be since he was already actively receiving services. So he'll miss 2 months of therapy. I am going to do what I can to keep him on track, but I'm really worried about the occupational therapy. It's just extremely hard for him and he was finally started to respond to the sessions. Now I know he will regress and it will be hard to get him back on track. Everyone is suggesting that I just do what the therapist does, but trust me when I tell you it is not that easy. The main reason is b/c any child will work better with someone other than their parents. It sounds crazy but it's true. It happens all the time with my photography business. Parents tell me that their children HATE to take pictures, but I never have a problem getting great pictures of their kids and most parents leave the sessions saying "Wow s/he NEVER did that for me!!" Well, I'm a new person who only comes around once in a while, so it's intruguing to them. Same thing with J and the therapists. He knows them, but they only come once a week so it's almost like a treat to them and he doesn't mind spending 45 minutes with them. The other reason I know I cannot completely take over OT is b/c it's so rough for him and rough for me to watch him. Occupational therapy generally helps him with things that he normally should have no problems doing daily. She's helping him to be able to successfully perform his occupation, which right now is to be a child...laugh, play, learn, grow up...But it's hard for him since he's dealing with the sensory issue. He extremely turned off by different textures, he hates to wear clothing with tags, he doesn't eat, he can't sit still, he bangs his head when he's frustrated (although his diet change has decreased that tremendously), he falls ALOT, among other things. But she helps him to deal with these things. She started off working with his feeding issues. He went CRAZY!!! It was traumatizing for him and it made me cry to watch him go through that. I planned to ask the therapist to hold off on feeding therapy for a while, but she decided to stop on her own b/c it was just too much, so that's definitely something I'm not willing to do on my own. For the past few weeks she's been working on him with different textures. One that repulses him the most is dry oatmeal. He cries and gags when he has to touch it and usually gets up and runs to my lap for comfort. I NEVER want to be the person on the other side of the table who is making him do something that he doesn't like. I know it will help hima nd it's what he needs, but I'm his mother so I want to remain the person he can run to for comfort. So taking over OT sessions is not going to be an easy task.
I do, however, plan to continue doing sensory exercises with him. Those should keep him close to where he needs to be once the OT comes back. I ordered him a weighted vest which is simply a vest that I can add weights to. The extra weight give him added pressure since he is a "sensory seeker". It also helps his balance and could help with muscle tone, but that's not one of his issues. He hates to wear it b/c it makes him fall alot, but when he learns to not fall then that's helping his balance. I also got him a chewy tube, which is basically a rubber teething toy shaped like a T. When I gave it to him, he immediately started chewing on it. The tube stimulates his oral muscles and help him to develop oral motor skills, so hopefully he won't have any problems chewing adult food once he starts eating more. Also, the chewy tube can work muscles that will help develop his speech more. I often find him watching TV and chewing away on the tube. I may have to carry it along when we go to noisy places b/c when he gets nervous he chews on his shirt (or my arm!!) so I wonder if the chewy tube would help to calm him. Other things I can do can easily be masked as games, like ring around the rosey, jumping up and down, hand walking, etc. Anything to get the senses going. All of that will help him with the little issues, but I cannot and will not touch the bigger issues. Hopefully he will hang in there until July.
You don't say?!?! They come on Mondays. Today is Tuesday. Even if they didn't call me, I think I'd have figured it out by now! I didn't tell her that though...hehehe. Just thought it! I told her that I spoke with his therapists and they explained the lack of funds issue. She then asked me if I had thought of any alternative routes for J temporarily. I asked her if there were any non contracted therapists through First Steps that would be willing to see J, but she said not at the moment. Unfortunately we cannot afford to pay out of pocket for the sevrices, and I have no idea why they are so dang expensive in the first place?!?! So no. I have no alternative. The good news (I guess??) is that they will pick him back up in July once they get their yearly funds. I asked her if she was certain that J would be picked back up and she assured me that he would be since he was already actively receiving services. So he'll miss 2 months of therapy. I am going to do what I can to keep him on track, but I'm really worried about the occupational therapy. It's just extremely hard for him and he was finally started to respond to the sessions. Now I know he will regress and it will be hard to get him back on track. Everyone is suggesting that I just do what the therapist does, but trust me when I tell you it is not that easy. The main reason is b/c any child will work better with someone other than their parents. It sounds crazy but it's true. It happens all the time with my photography business. Parents tell me that their children HATE to take pictures, but I never have a problem getting great pictures of their kids and most parents leave the sessions saying "Wow s/he NEVER did that for me!!" Well, I'm a new person who only comes around once in a while, so it's intruguing to them. Same thing with J and the therapists. He knows them, but they only come once a week so it's almost like a treat to them and he doesn't mind spending 45 minutes with them. The other reason I know I cannot completely take over OT is b/c it's so rough for him and rough for me to watch him. Occupational therapy generally helps him with things that he normally should have no problems doing daily. She's helping him to be able to successfully perform his occupation, which right now is to be a child...laugh, play, learn, grow up...But it's hard for him since he's dealing with the sensory issue. He extremely turned off by different textures, he hates to wear clothing with tags, he doesn't eat, he can't sit still, he bangs his head when he's frustrated (although his diet change has decreased that tremendously), he falls ALOT, among other things. But she helps him to deal with these things. She started off working with his feeding issues. He went CRAZY!!! It was traumatizing for him and it made me cry to watch him go through that. I planned to ask the therapist to hold off on feeding therapy for a while, but she decided to stop on her own b/c it was just too much, so that's definitely something I'm not willing to do on my own. For the past few weeks she's been working on him with different textures. One that repulses him the most is dry oatmeal. He cries and gags when he has to touch it and usually gets up and runs to my lap for comfort. I NEVER want to be the person on the other side of the table who is making him do something that he doesn't like. I know it will help hima nd it's what he needs, but I'm his mother so I want to remain the person he can run to for comfort. So taking over OT sessions is not going to be an easy task.
I do, however, plan to continue doing sensory exercises with him. Those should keep him close to where he needs to be once the OT comes back. I ordered him a weighted vest which is simply a vest that I can add weights to. The extra weight give him added pressure since he is a "sensory seeker". It also helps his balance and could help with muscle tone, but that's not one of his issues. He hates to wear it b/c it makes him fall alot, but when he learns to not fall then that's helping his balance. I also got him a chewy tube, which is basically a rubber teething toy shaped like a T. When I gave it to him, he immediately started chewing on it. The tube stimulates his oral muscles and help him to develop oral motor skills, so hopefully he won't have any problems chewing adult food once he starts eating more. Also, the chewy tube can work muscles that will help develop his speech more. I often find him watching TV and chewing away on the tube. I may have to carry it along when we go to noisy places b/c when he gets nervous he chews on his shirt (or my arm!!) so I wonder if the chewy tube would help to calm him. Other things I can do can easily be masked as games, like ring around the rosey, jumping up and down, hand walking, etc. Anything to get the senses going. All of that will help him with the little issues, but I cannot and will not touch the bigger issues. Hopefully he will hang in there until July.
Monday, April 20, 2009
I am so upset!!
I got a call at 8am this morning from J's OT. She called to tell me that unfortunately, they can no longer see the kids who are funded through EI b/c they ran out of funds and EI will not be able to pay the contracted therapists. So his speech therapy and occupational therapy has been cancelled due to lack of funds. What pisses me off is that I have YET to hear from the Early Intervention coordinator. She should have been the one contacting me to tell me of this issue. That way I can ask her the questions I have as far as where to go from here b/c J obviously NEEDS the therapy and without them, he will regress. Some of you older readers may remember how hard of a time I had getting in touch with her about getting J his OT. It took WEEKS to get her to return several messages I left for her. I am so tired of working with this program. They are so unorganized and don't seem to care. When I worked in pediatrics, I always treated the kids and the parents the way I would want my child and myself to be treated in that situation. If it were their child going through what J is going through, I am pretty sure things wouldn't be so laid back and unimportant. Don't get me wrong, I know that the terrible economy can be the cause for their lack of funds at the moment, but it's just they way that I had to find out and that I did not get a call from Early Intervention. It was not the therapists responsibility to call and tell me this, but they did b/c they know that our particular coordinator is not good at making phone calls when she should and they didn't want us waiting home on them.
So now my baby is once a again, trapped in the system. He can't continue getting the services he needs b/c EI ran out of funds, and we cannot go private b/c no one in this area accepts tricare insurance. I have no idea what we will do from here, but I'm giving it to God...
So now my baby is once a again, trapped in the system. He can't continue getting the services he needs b/c EI ran out of funds, and we cannot go private b/c no one in this area accepts tricare insurance. I have no idea what we will do from here, but I'm giving it to God...
Tuesday, January 27, 2009
Low Funds...
So, as many of you know, we've been waiting on an Occupational Therapist for J for about a month now. The nurse at his Drs office called the CDC and they let her know that it would be AT LEAST 6 months before he could be assigned an OT through them, so that wouldn't work. She then sent the referral to the Early Intervention center we are alreayd using for his speech therapy. I waited a week and then started calling them to see if I can get any idea of how long we will have to wait for the OT. I ended up leaving 3 different messages that were not returned and no one who answered the calls could answer my questions. It was ridiculous. So yesterday I called and complained. I also told his speech therapist, when she came for his session, that I could not get any calls returned and it was very frustrating. So I wasn't surprised when my calls were finally returned later yesterday evening. I told the coordinator that I was calling to see what the status was on J and his OT. She told me:
"We are low on funds and that's why he hasn't been assigned an OT yet. We can only assign OTs when they are truly needed."
What the?? First of all, we were prepared to pay for Early Intervention for our son, we were surprised when we found out that it is funded until he is 3 yrs old. Funding should not be a reason why my son cannot get an OT. What really upset me though was the comment that OTs are only assigned where truly needed. Well how do you decide when an OT is truly needed? The coordinator does not witness his sensory behaviors so she wouldn't know. She then asked me why was his Dr referring him for an OT. I told her "J has some sensory issues that are affecting his progress in speech therapy. The speech therapist agrees that his sensory issues need to be addressed in order for him to get more out of his sessions with her." With that she said, "Ok we will get him set up with an OT."
I really don't expect to hear anything from them anytime soon, but you better believe that they will get a call from me weekly and I will ask his SLP every Monday if she's heard anything. Such a frustrating system to have to deal with!
"We are low on funds and that's why he hasn't been assigned an OT yet. We can only assign OTs when they are truly needed."
What the?? First of all, we were prepared to pay for Early Intervention for our son, we were surprised when we found out that it is funded until he is 3 yrs old. Funding should not be a reason why my son cannot get an OT. What really upset me though was the comment that OTs are only assigned where truly needed. Well how do you decide when an OT is truly needed? The coordinator does not witness his sensory behaviors so she wouldn't know. She then asked me why was his Dr referring him for an OT. I told her "J has some sensory issues that are affecting his progress in speech therapy. The speech therapist agrees that his sensory issues need to be addressed in order for him to get more out of his sessions with her." With that she said, "Ok we will get him set up with an OT."
I really don't expect to hear anything from them anytime soon, but you better believe that they will get a call from me weekly and I will ask his SLP every Monday if she's heard anything. Such a frustrating system to have to deal with!
Tuesday, October 21, 2008
Early Intervention Evaluation
J was evaluated today for acceptance into the First Steps Early Intervention program. Daddy came home from work to be here to observe and they all pulled up to the house together. It was the case worker along with 4 therapists
and they were so good with J. The physical therapist got on the floor with J and took out a ball. He immediately showed them that he could kick a ball, throw a ball, run in circle, hop with both feet, and walk on his toes :) He put together a shapes puzzle, stacked some blocks, and drew a nice circle. The speech therapist was asking me what words we've heard him say and between Daddy and I we were able to come up with a list of 10 words, which put him at 18 months development. He said 3 of the 10 words during the eval, "Yay!" when he put the puzzle together, "Bibe" (five) when he ran over to give Daddy and I a high five, and "Byebye" when everyone left. The therapist took out a group of objects (rubber duck, car, baby doll, elmo, ball, and a cup) and asked him to name the objects by pointing at the object and asking what it was. He couldn't name them but he could pick a certain object out of the group when asked. So he knows what the objects are but he can't say the words. She showed him a flash card with objects on it and he just got really quiet. I have flashcards for him also, and he does the same thing to me. The therapists asked me how does he communicate with us at home and I told them that he can sign eat (which he only does in the morning when he wants breakfast) and he will grab his blankie when he's ready for bed, but other than that we follow his cues. When he's thristy, you will usually find him in the kitchen hanging off the fridge, or knocking on it. When he wants to read, he will go to his closet and get a book and bring it to us. When he wants to play he brings us a toy. When he wants to watch television he grabs the remote. This is how he communicates and when we ask him to say words he either gets really quiet or has a tantrum. So this also explained to us why he is such an angel at home but then completely melts down in public. His is always very irritable and clingy. That's b/c in public, he doesn't have things that he can use to communicate with us, so it's very frustrating to him. He is at an age where he understands so much and needs to be able to use words to communicate, but he cannot do that effectively. However, he had to test at a level of 17.25 months in order to be accepted into the program. He tested at 18 months, mainly b/c of the list of 10 words we provided and the fact that he understands and knows words, but cannot say them. This didn't surprise me at all. But they did say that from observing him, they do think that he could use the help of a speech therapist to get him talking, so they accepted him into the program. He will remain in the program for a year and will be seen by the speech therapist once a week for 45 minutes each time. She will work on language skills and possibly some oral motor skills to see if that will help him to hopefully eat better. And if that doesn't help he may get into the picky eaters program. I'm also going to mention the eating to his pedi at the 2 yr appt to see if he thinks J needs to go back on his reflux meds for a while.
So this eval certainly calmed my fears and I'm proud to say that my baby is on target for all areas except speech and cognitive development, but he's not too far behind in either and just needs a boost. I can't wait for him to start using his words and for his frustrations to be decreased. Yeah I know you are all probably saying, She'll very soon wish that he had never started talking b/c she won't be able to shut him up, but let me tell you...I cannot wait to have a little conversation with my boy and to hear him tell me "I love you".
and they were so good with J. The physical therapist got on the floor with J and took out a ball. He immediately showed them that he could kick a ball, throw a ball, run in circle, hop with both feet, and walk on his toes :) He put together a shapes puzzle, stacked some blocks, and drew a nice circle. The speech therapist was asking me what words we've heard him say and between Daddy and I we were able to come up with a list of 10 words, which put him at 18 months development. He said 3 of the 10 words during the eval, "Yay!" when he put the puzzle together, "Bibe" (five) when he ran over to give Daddy and I a high five, and "Byebye" when everyone left. The therapist took out a group of objects (rubber duck, car, baby doll, elmo, ball, and a cup) and asked him to name the objects by pointing at the object and asking what it was. He couldn't name them but he could pick a certain object out of the group when asked. So he knows what the objects are but he can't say the words. She showed him a flash card with objects on it and he just got really quiet. I have flashcards for him also, and he does the same thing to me. The therapists asked me how does he communicate with us at home and I told them that he can sign eat (which he only does in the morning when he wants breakfast) and he will grab his blankie when he's ready for bed, but other than that we follow his cues. When he's thristy, you will usually find him in the kitchen hanging off the fridge, or knocking on it. When he wants to read, he will go to his closet and get a book and bring it to us. When he wants to play he brings us a toy. When he wants to watch television he grabs the remote. This is how he communicates and when we ask him to say words he either gets really quiet or has a tantrum. So this also explained to us why he is such an angel at home but then completely melts down in public. His is always very irritable and clingy. That's b/c in public, he doesn't have things that he can use to communicate with us, so it's very frustrating to him. He is at an age where he understands so much and needs to be able to use words to communicate, but he cannot do that effectively. However, he had to test at a level of 17.25 months in order to be accepted into the program. He tested at 18 months, mainly b/c of the list of 10 words we provided and the fact that he understands and knows words, but cannot say them. This didn't surprise me at all. But they did say that from observing him, they do think that he could use the help of a speech therapist to get him talking, so they accepted him into the program. He will remain in the program for a year and will be seen by the speech therapist once a week for 45 minutes each time. She will work on language skills and possibly some oral motor skills to see if that will help him to hopefully eat better. And if that doesn't help he may get into the picky eaters program. I'm also going to mention the eating to his pedi at the 2 yr appt to see if he thinks J needs to go back on his reflux meds for a while.
So this eval certainly calmed my fears and I'm proud to say that my baby is on target for all areas except speech and cognitive development, but he's not too far behind in either and just needs a boost. I can't wait for him to start using his words and for his frustrations to be decreased. Yeah I know you are all probably saying, She'll very soon wish that he had never started talking b/c she won't be able to shut him up, but let me tell you...I cannot wait to have a little conversation with my boy and to hear him tell me "I love you".
Tuesday, October 14, 2008
Head, Shoulders, Knees and Toes
This seriously melts my heart. I've been singing this song to J for a while now, trying to help him to not only learn his body parts, but also to try and say them. Tonight, on the way home from Sam's, he was in the backseat babbling and we looked in the back seat and he was pointing to his knees and his feet. He continued to do this once we got home and even after his bath. Then just before bed he ran to the CD player and did it, so I knew what he wanted. I turned on the song and he actually waited for the song to start and did his own sweet little version of Head, shoulders, knees and toes. I love how he does knees and toes! LOL! Sorry he only does it twice and then has to give me a big hug and kiss, but listem closely...
did you hear him say Head??? He tried to say shoulders after that! The caseworker came over today to do paperwork and she agreed that J is delayed in his language skills, but seems to be advanced in everything else. She agrees that there is some sort of feeding issue causing the delay and the frustration he experiences daily...Oh yeah, he gave her a nice little preview of his frustration!! LOL! The caseworker will be back on Tuesday of next week with three therapists and J will be evaulated then for acceptance into the program.
did you hear him say Head??? He tried to say shoulders after that! The caseworker came over today to do paperwork and she agreed that J is delayed in his language skills, but seems to be advanced in everything else. She agrees that there is some sort of feeding issue causing the delay and the frustration he experiences daily...Oh yeah, he gave her a nice little preview of his frustration!! LOL! The caseworker will be back on Tuesday of next week with three therapists and J will be evaulated then for acceptance into the program.
Monday, October 13, 2008
Early Intervention
Tomorrow, a team of therapists will come over to start the evaluation to see if J is eligible for the EI program. He will be seen by an occupational therapist, a speech therapit, and a feeding therapist. I hope the feeding therapist comes armed with weapons b/c J will give her a good fight! He has to be 25% delayed in any area, such as social, cognitive, speech, feeding in order to get into the program. I believe he'll get in mainly for the feeding issues and then for speech. I really don't think he's socially delayed at all, but what do I know?? I'm just his mom! The lady told me I will know if he's accepted immediately after the evaluation and they will give me his results on all fronts. Tomorrow is our first meeting but I think it will be mostly paperwork and he probably won't be evaluated until our second visit. I am so happy they come to us though b/c it will be less stress for both of us. I will keep everyone posted.
I'll try to come back later to post about our awesome weekend in Memphis!
I'll try to come back later to post about our awesome weekend in Memphis!
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