Target had a good sale on juice boxes, so we stocked up last week. Since then, the kids have been eyeballing the juice boxes because I told them they were only for school. So, last night Alex announced that he was ready to begin school even though he had previously explained he would not start until September. At 9:30, he said, "Let's start school now!" Immediately suspicious and always a prankster, I said, "okay, let's go." As I was continuing with the ruse, Alex asked, "Can I have a juice box now?" BUSTED! LOL!
This morning, Alex was ready to go until I told him he could have his juice box at break and not before. He developed a sore knee that could only be treated with a juice box. The flow of tears convinced me that we needed to start on a positive note this year. After a frank discussion about how we needed to take homeschooling very seriously and do our best, I gave him the juice box. So far, so good.
Who knew that juice boxes had medicinal properties?
Friday, August 29, 2008
Friday, July 04, 2008
So, what do we do now?
Our health insurance covers speech, OT, and psychological services for rehabilitative purposes only. ADHD is considered a mental health issue (insert eye roll), so the dr's visits for that are not covered either. Thankfully, we have a primary care dr that is handling that prescription now that we have paid a psychiatrist out of pocket to confirm the diagnosis of ADHD. (Yes, even though 2 developmental pediatricians, a neuropsychologist, a numerous other professionals can diagnosed and confirmed it.) Feel free to insert yet another eye roll here. In fact, just keep them eyes a-rollin'.
Our county provides these services on a sliding scale to residents through 3 major agencies. Back in February, I applied for help through the largest one. Alex was accepted as a client, and our worker said she would be in contact with us to get Alex set up with speech, OT, and psychological therapy through the therapy center where Alex currently gets OT. A few months ago, the worker called and said that the therapy center was understaffed and not taking any more clients, even though Alex was already established. A few weeks ago, I called her back to check on things, and she said that the center was ready to accept new clients. She was going to get it set up and call me back in 2 days. She never called. In the meantime, Emily got sick, and then she had surgery--I forgot to call. I called yesterday and got a bombshell. The county has decided not to provide services for children who can or are getting services in the public schools. The worker said she didn't know how she was going to tell her families this news so that is why she didn't call.
Things with the local schools continue to deteriorate. The case loads for the therapists are huge, and they are spread thin--most of them visit multiple schools every week. Alex wasn't getting what he needed there anyway which is why I started this process in the first place. I just don't know why all this is happening or what to do now.
Our county provides these services on a sliding scale to residents through 3 major agencies. Back in February, I applied for help through the largest one. Alex was accepted as a client, and our worker said she would be in contact with us to get Alex set up with speech, OT, and psychological therapy through the therapy center where Alex currently gets OT. A few months ago, the worker called and said that the therapy center was understaffed and not taking any more clients, even though Alex was already established. A few weeks ago, I called her back to check on things, and she said that the center was ready to accept new clients. She was going to get it set up and call me back in 2 days. She never called. In the meantime, Emily got sick, and then she had surgery--I forgot to call. I called yesterday and got a bombshell. The county has decided not to provide services for children who can or are getting services in the public schools. The worker said she didn't know how she was going to tell her families this news so that is why she didn't call.
Things with the local schools continue to deteriorate. The case loads for the therapists are huge, and they are spread thin--most of them visit multiple schools every week. Alex wasn't getting what he needed there anyway which is why I started this process in the first place. I just don't know why all this is happening or what to do now.
Friday, June 27, 2008
Post-surgery
Since my last post, Emily had a visit to the ER because of stomach pain. She also had her first ambulance ride to a children's hospital to rule out appendicitus. Thank the Lord it wasn't that! She was, to quote the ER doc, "Full of stool." So one milk and molasses enema later, Emily was fairly well cleaned out. She still had a viral pneumonia though and tonsils that looked like raw hamburger. The test results were negative for mono. (YAY!)
We went to the ENT to check her hearing and have her tonsils looked at. He scheduled her for the first available T&A surgery which she had last Monday. He also scoped her airway and found damage from GERD.
She is recovering very well. Her brother and sister are in VA this week, so she has been able to stay quiet and have Mommy all to herself. It has been great, but I don't think I ever want to see another Baby Einstein or Fraggle Rock video ever again! LOL!
We went to the ENT to check her hearing and have her tonsils looked at. He scheduled her for the first available T&A surgery which she had last Monday. He also scoped her airway and found damage from GERD.
She is recovering very well. Her brother and sister are in VA this week, so she has been able to stay quiet and have Mommy all to herself. It has been great, but I don't think I ever want to see another Baby Einstein or Fraggle Rock video ever again! LOL!
Monday, June 02, 2008
I'm giving up.
Emily's IEP meeting was anything but individualized. I didn't sign it. I contacted the dev pedi's office and their advocate called me several days later. She basically told me she could observe Emily at school, but that was about it. She would not get into anything legal, so no due process or mediation meetings. So, in simpler terms, she wasted my time. I called the AI director to ask her what happened with her plans to create an "Emily program" because what was on that piece of crap IEP had nothing to do with helping Emily with her specific issues. She passed the buck to the school director who finally called me today. She did tell me that they will re-evaluate Emily in October after they have had a chance to get to know her. Whatever. I can take them to court and waste more time and money, or I can go the private route and get her therapy that will actually make a difference. Getting this worked up about it just makes it harder to be the parent that I need to be. Last week was a fabulous week with Emily. I feel like we really connected. I can't even describe how wonderful those 4 days were. It was balm for my heart.
The downside, and I think it is funny in an ironic sort of way, Jason and I were talking about how wonderful the last few days with Emily had been. I half-jokingly said, "I bet she's getting sick." Dangit--I hate being right all the time. Emily spiked a fever on Friday morning, and she has been baking at 103-104 ever since. She is now constipated and feeling wretched. She has not slept more than an hour at a time in the last 3 nights. I am like the walking dead, existing on coffee and brownies. Beware the sleep-deprived, pmsing, uber-crank hopped up on caffeine and sugar!
She had bloodwork today that looked relatively good, but we are still waiting on the final mono answer and her lead levels. The dr wants us to rule out any hearing issues as well. Adding a trip to the ENT to my mega to-do list for this week. Hopefully the next time I remember to blog I will be back to my usual Susy Sunshine self.
The downside, and I think it is funny in an ironic sort of way, Jason and I were talking about how wonderful the last few days with Emily had been. I half-jokingly said, "I bet she's getting sick." Dangit--I hate being right all the time. Emily spiked a fever on Friday morning, and she has been baking at 103-104 ever since. She is now constipated and feeling wretched. She has not slept more than an hour at a time in the last 3 nights. I am like the walking dead, existing on coffee and brownies. Beware the sleep-deprived, pmsing, uber-crank hopped up on caffeine and sugar!
She had bloodwork today that looked relatively good, but we are still waiting on the final mono answer and her lead levels. The dr wants us to rule out any hearing issues as well. Adding a trip to the ENT to my mega to-do list for this week. Hopefully the next time I remember to blog I will be back to my usual Susy Sunshine self.
Tuesday, May 06, 2008
IEP on Thursday
So, on Friday, Emily's teacher called to tell me that the the school wasn't ready for Emily's IEP, and that they were not having it this week. I got a call today that they ARE having it--on Thursday. The woman from the school was recapping and said something like, "She is being labeled as Speech and Language Impaired, right?" I told her I thought that was still up for discussion.
I am so sick of fighting! Why can't they just do the right thing? I don't care if they don't have the resources. I can get private resources--maybe--if she is appropriately labeled. She meets for AI both from the medical and academic sides! I should have known when during the home visit the social worker started spewing about children sometimes look like they have autism when they are just speech and languaged delayed. I corrected her then, and the autism specialist mentioned that Emily is probably just modeling her brother. (Eyeroll)
I am just so overwhelmed.
I am so sick of fighting! Why can't they just do the right thing? I don't care if they don't have the resources. I can get private resources--maybe--if she is appropriately labeled. She meets for AI both from the medical and academic sides! I should have known when during the home visit the social worker started spewing about children sometimes look like they have autism when they are just speech and languaged delayed. I corrected her then, and the autism specialist mentioned that Emily is probably just modeling her brother. (Eyeroll)
I am just so overwhelmed.
Tuesday, April 22, 2008
Emily's conversation about shoes
Today has been a trying day. I am tired. I am tired of being licked, sniffed, snotted on, bashed in the head, screamed at, kicked, and otherwise pummeled. I am tired of worrying. Tired of doctors. Tired of recurring GI issues. Tired of schools. Tired of stares. Just flat out tired. Today, all I can do is just pray and give the Lord 100% of all of this. I don't have any strength of my own to do this anymore...not that I ever did. Then the Lord gave me the following dose of perspective, and it made my day:
Today was also a terrible allergy day for Alex, so I decided to keep him inside. Laura wanted to go out, and while Alex was occupied with schoolwork, I let her go out back. Emily, stripped to the diaper, also wanted to go outside. She has been uber cranky today and did not nap, so I kept trying to get her to make her lay down. (Not to mention that I am weary to the core and not up to chasing her around the yard.) She kept leading me by the hand to the back door, saying, "C'mon Ma!" She finally got distracted. A while later, she came up to me with this look--like a lighbulb moment. "Shoes!" she said happily. "Shoes, shoes, shoes! C'mon Ma! Shoes! One...Two...Three! Bye! Bye! Let's go! Shoes...NOW! One...Twoooooooo!"
She was desperately trying to tell me that she needed shoes in order to go outside because she thought that was the reason I was keeping her in. She was recalling all the scripts she has ever heard about shoes, and relaying them to me to make me understand. Almost everyday, I tell the kids, "Shoes! Shoes! Shoes! Everybody get your shoes on!" If the kids are moving sluggishly, and I need to get them out the door, I count "One. Two. Three! Bye-bye guys! I'm going!" Or I'll say, "Let's go!" Or if things get really hairy, "Shoes! NOW!" And if all of this fails, I use my old One Two Three Magic line, "One...Twoooooooooooooo!" (I rarely have to get to three. It is a beautiful system.) Emily was quoting me...with meaning!
It took me a minute to realize what had just happened, but the moment it sunk in, it was profound.
Today was also a terrible allergy day for Alex, so I decided to keep him inside. Laura wanted to go out, and while Alex was occupied with schoolwork, I let her go out back. Emily, stripped to the diaper, also wanted to go outside. She has been uber cranky today and did not nap, so I kept trying to get her to make her lay down. (Not to mention that I am weary to the core and not up to chasing her around the yard.) She kept leading me by the hand to the back door, saying, "C'mon Ma!" She finally got distracted. A while later, she came up to me with this look--like a lighbulb moment. "Shoes!" she said happily. "Shoes, shoes, shoes! C'mon Ma! Shoes! One...Two...Three! Bye! Bye! Let's go! Shoes...NOW! One...Twoooooooo!"
She was desperately trying to tell me that she needed shoes in order to go outside because she thought that was the reason I was keeping her in. She was recalling all the scripts she has ever heard about shoes, and relaying them to me to make me understand. Almost everyday, I tell the kids, "Shoes! Shoes! Shoes! Everybody get your shoes on!" If the kids are moving sluggishly, and I need to get them out the door, I count "One. Two. Three! Bye-bye guys! I'm going!" Or I'll say, "Let's go!" Or if things get really hairy, "Shoes! NOW!" And if all of this fails, I use my old One Two Three Magic line, "One...Twoooooooooooooo!" (I rarely have to get to three. It is a beautiful system.) Emily was quoting me...with meaning!
It took me a minute to realize what had just happened, but the moment it sunk in, it was profound.
Thursday, April 10, 2008
And three makes a complete set
I took the kids back to the developmental pedi for Laura's appointment. She has some great social skills, but she is also on the spectrum. She will also have more learning difficulties than Alex and probably Emily. It hurts, even though I can't say I was surprised. I was hopeful that she would not be on the spectrum--her oddness is nothing like the other two--but here we are. She *is* a princess. She eats, sleeps, drinks, dreams princess stuff. It is so cute that I forget that this level of obsession isn't normal. But, what is cute for a 5.5 year old will not be cute in a few years.
On the other hand, I had the most wonderful exchange with Emily today! She sat on my lap and had a conversation with me! A first! She was feeding a tiny toy dog some pretend cookies and cocoa on a tray, and here is our exchange:
Me: Emily, what is that? Is it a cookie?
Em: Yeah! Cookie!
Me: Is this a cookie? (Pointing at the cocoa)
Em: YES!
Me: No, that's not a cookie! (Tickling)
Em: There's a cookie! (Pointing at a box of cracker)
Me: Silly girl, that's a cracker!
Em: Nooooooooooo, cooooooooooookie!
Me: Nooooooooooo, cracker!
Em: CWACKER!
This was just music to my ears!
On the other hand, I had the most wonderful exchange with Emily today! She sat on my lap and had a conversation with me! A first! She was feeding a tiny toy dog some pretend cookies and cocoa on a tray, and here is our exchange:
Me: Emily, what is that? Is it a cookie?
Em: Yeah! Cookie!
Me: Is this a cookie? (Pointing at the cocoa)
Em: YES!
Me: No, that's not a cookie! (Tickling)
Em: There's a cookie! (Pointing at a box of cracker)
Me: Silly girl, that's a cracker!
Em: Nooooooooooo, cooooooooooookie!
Me: Nooooooooooo, cracker!
Em: CWACKER!
This was just music to my ears!
Thursday, April 03, 2008
Update
I spoke with the psy today. She told me she would have the social worker review Em's info because they were together today, and call me back. She called back less than 30 mins later and said that they saw "autistic tendencies" in Emily, but not enough to place her in the autism program. She said that she observed her playing "tea party" and appropriately interacting with her classmates. I really think she was observing some other child. Then she said that our doctor had diagnosed Emily as PDD-NOS, not autism. I corrected her that he wrote that she was diagnosed with high functioning autism bordering on PDD-NOS. "Oh, I must have misread that," was her reply. Yeah. Take 5 minutes to look at all that information and I'm not surprised she got it wrong. But, whatever. She discussed the CARS--we rated her as a 33, and her teacher rated her as a 23. Then she said that she and the social worker discussed this and they thought we should place Emily in the special education preschool and reevaluate for the autism program next year. I explained that we have been down this road before with Alex and that I would rather err on the side of caution, enroll Emily in the autism program now, and reevaluate for the special education program later. I know there is an opening in the program, so it is just a matter of getting her in there. She is going to talk to the director of the autism program and get back to me.
Why does all of this have to be such a fight?
Why does all of this have to be such a fight?
"You'll be here next week, right?"
We are going for some sort of record here. This is the response that I have gotten from the school psychologist at Emily's Early Learning Center for 6 straight encounters. The first time was the week I asked them to help her get into the autism program. That day I spoke both with the director of this program and this psychologist. They were going to decide which school would do the evaluation and get back to me. The following week, the psy said that Emily's current school would do the eval, and that she and the school social worker would observe Emily the following week. When we came back in, the psy told me that the social worker didn't show up, so we would have to reschedule for the next week. That week rolled around, and they both observed her in the gross motor room (Emily's favorite place in the world) and then psy came in for the group sing. The next week, I was expecting the results of the eval, but instead the psy gave me forms to fill out and bring in the following week. I gave them to Emily's teacher on Monday, and when we came to the school, the psy still hadn't reviewed them. She had the nerve to say, "You'll be here next week, right?"
To add more salt to my wounds, Emily's teacher asked me, "Did R tell you how many good social cues she picked up on when she observed Emily?" Warning bells started going off in my head. I wanted to cry or bang my head against the wall! A school psychologist in a center for children with disabilities should know better! Makes me want to send her the link to Autism Speaks so that she can study up on the excellent video clips they have. We are wasting precious time. Anyway, when she said that about next week, I told her yes, we would be there, but I really wanted to get this going sooner. She said that she had my phone number and walked away.
So, I did what I probably should not have. I called the director of the other program. Not that it did any good because she still has not returned my call. Jason and I talked about it and I am going to call the psy this afternoon if I have not heard from her. I have the phone number for the director of Emily's school that I can call as well, but in past experience making too many people mad just hurts my kids. I know the Lord is in control, and I need to hand this over. It is so hard.
As a side note, I do love, love, love Emily's teacher. She has been a lifeline for me, and I refuse to let her get stuck in the middle of all this.
To add more salt to my wounds, Emily's teacher asked me, "Did R tell you how many good social cues she picked up on when she observed Emily?" Warning bells started going off in my head. I wanted to cry or bang my head against the wall! A school psychologist in a center for children with disabilities should know better! Makes me want to send her the link to Autism Speaks so that she can study up on the excellent video clips they have. We are wasting precious time. Anyway, when she said that about next week, I told her yes, we would be there, but I really wanted to get this going sooner. She said that she had my phone number and walked away.
So, I did what I probably should not have. I called the director of the other program. Not that it did any good because she still has not returned my call. Jason and I talked about it and I am going to call the psy this afternoon if I have not heard from her. I have the phone number for the director of Emily's school that I can call as well, but in past experience making too many people mad just hurts my kids. I know the Lord is in control, and I need to hand this over. It is so hard.
As a side note, I do love, love, love Emily's teacher. She has been a lifeline for me, and I refuse to let her get stuck in the middle of all this.
Monday, March 31, 2008
Beware the happy child!
Emily's teacher came over for their regularly scheduled session. I should have known something was wrong when Emily calmly let her teacher sing to her. (Emily cannot stand to hear anyone sing a Capella, but she can tolerate music and radio songs, etc. Just oddness. LOL!) Shortly after her teacher left, she spiked a fever. Due to the fact that Emily has been asleep all day, things have been pretty peaceful in our household!
=oP
Thankfully, Emily already had a well-child checkup scheduled for this afternoon, and she is on antibiotics now. Her throat looks like raw hamburger. She must have had this brewing for a while, but she doesn't seem to register pain until it is at terrible levels. This can be a blessing and a curse. As for the checkup, I don't know what to make of it. When the pedi asked if I had any developmental concerns, I explained Emily's diagnosis, and the subject was dropped. I don't know if that was because she has been to a developmental pedi or if it means this practice doesn't want to be bothered with the developmental stuff.
I think I was spoiled rotten by our pedi back home who actually carved out a block of time to discuss everything from potty training to tantrums to health concerns during a well child checkup. I just want a front-line physician here who will take the time to help me sort all this out and offer regular advice on my kids' development. They get sicker than most kids, so we are in the office a lot, and it would be wonderful if their pedi cared enough to get to know them.
=oP
Thankfully, Emily already had a well-child checkup scheduled for this afternoon, and she is on antibiotics now. Her throat looks like raw hamburger. She must have had this brewing for a while, but she doesn't seem to register pain until it is at terrible levels. This can be a blessing and a curse. As for the checkup, I don't know what to make of it. When the pedi asked if I had any developmental concerns, I explained Emily's diagnosis, and the subject was dropped. I don't know if that was because she has been to a developmental pedi or if it means this practice doesn't want to be bothered with the developmental stuff.
I think I was spoiled rotten by our pedi back home who actually carved out a block of time to discuss everything from potty training to tantrums to health concerns during a well child checkup. I just want a front-line physician here who will take the time to help me sort all this out and offer regular advice on my kids' development. They get sicker than most kids, so we are in the office a lot, and it would be wonderful if their pedi cared enough to get to know them.
Sunday, March 30, 2008
Happy Birthday Emily!
My sweet baby girl is 3 years old today!
She has had a great day. We took her out for her birthday, and she sat with her brother and sister on the other side of the booth--just like a big girl. She even let me sing "Happy Birthday" to her without throwing a fit or kicking me. Now that was a huge step! LOL!
The birthday girl is in her room asleep. When she wakes up, we have a Dora birthday cake for her and a few presents. I'm sad that it will be just us here to celebrate, but considering that Emily doesn't have a clue that is even her birthday or anything that birthdays entail, she won't notice or miss anyone.
It is so easy to let bitterness steal my joy today. But, just looking at her with her hair up in pigtails and a sweet look on her face can make me forget most things. I hope she can hold on to this innocence and never be hurt or disappointed by others.
Dearest Emily, my birthday wish for you is happiness, always. I love you!
She has had a great day. We took her out for her birthday, and she sat with her brother and sister on the other side of the booth--just like a big girl. She even let me sing "Happy Birthday" to her without throwing a fit or kicking me. Now that was a huge step! LOL!
The birthday girl is in her room asleep. When she wakes up, we have a Dora birthday cake for her and a few presents. I'm sad that it will be just us here to celebrate, but considering that Emily doesn't have a clue that is even her birthday or anything that birthdays entail, she won't notice or miss anyone.
It is so easy to let bitterness steal my joy today. But, just looking at her with her hair up in pigtails and a sweet look on her face can make me forget most things. I hope she can hold on to this innocence and never be hurt or disappointed by others.
Dearest Emily, my birthday wish for you is happiness, always. I love you!
Saturday, March 29, 2008
I miss my sister already. She and her family just left for home, and I am so sad! She is such a bright part of my life. I love that our husbands and our children love to be together. My only wish is that we could live closer. My dream is to live next-door to them someday. Please Lord, let that happen!
Laura and her counterpart Annie had a high time together. Laura kept calling Annie her "Cousin Friend." There was an...incident...in the bathroom. My sister and I found a towel on the floor in there with some very suspicious and very stinky smears on it. Sis tossed the towel, and after they left, I gave Alex and Laura a lecture about handwashing and using TP and never, ever, ever a towel. I asked who did it, and Laura piped up, "Cousin Friend did it. She had poop on her hand." (stare, blink) My husband and I got a huge laugh out of that as we resanitized the bathroom. Poor Cousin Friend was probably not the culprit, but she was not here to defend herself. LOL!
Alex and the boys spent most of the time torturing the girls and bowling on the Wii. They all started packing up last night, and Alex had a very hard time with that. He climbed in my lap and said, "I don't want anyone in this house to leave." It was all I could do not to cry in agreement. I love that boy!
Emily's favorite part was climbing on her uncle's lap or patting the baby on the head. She was very gentle, which surprised me. One look at Em's baby dolls will tell ya that she is anything but gentle! She had such a good few days. Very few melt-downs. Lots of words. She seems to thrive in a crowd.
Laura and her counterpart Annie had a high time together. Laura kept calling Annie her "Cousin Friend." There was an...incident...in the bathroom. My sister and I found a towel on the floor in there with some very suspicious and very stinky smears on it. Sis tossed the towel, and after they left, I gave Alex and Laura a lecture about handwashing and using TP and never, ever, ever a towel. I asked who did it, and Laura piped up, "Cousin Friend did it. She had poop on her hand." (stare, blink) My husband and I got a huge laugh out of that as we resanitized the bathroom. Poor Cousin Friend was probably not the culprit, but she was not here to defend herself. LOL!
Alex and the boys spent most of the time torturing the girls and bowling on the Wii. They all started packing up last night, and Alex had a very hard time with that. He climbed in my lap and said, "I don't want anyone in this house to leave." It was all I could do not to cry in agreement. I love that boy!
Emily's favorite part was climbing on her uncle's lap or patting the baby on the head. She was very gentle, which surprised me. One look at Em's baby dolls will tell ya that she is anything but gentle! She had such a good few days. Very few melt-downs. Lots of words. She seems to thrive in a crowd.
Friday, March 28, 2008
Vaccines
I had a terrible dream last night. In it, I was at my doctor's office for a check-up, and he told me that I needed a booster. As he was leaving the room, I told him that I wanted to speak to him about the vaccine before he gave it to me. He came back in the room and started the exam. Then he got the syringe and came at me. I screamed and tried to get away. I was yelling, "Please! I need to talk to you about this first!" He pinned me down and injected me. When he was finished, he said, "Now that wasn't so bad was it?" I had to explain that I was not scared of the injection but that I was concerned about the safety of the vaccine itself. I was so angry and embarrassed, and I felt violated because he wouldn't listen to me.
I know why I dreamed this. First, Emily's 3yr old check-up is on Monday. This is the first pediatrician appointment since her diagnosis, and this is with a new pediatrician. I want to discuss her development, not just her health. Last year, her previous pediatrician did not want to discuss anything related to her developmental delays or speech with anything more than, "Lets wait and see." It was an eerie parallel to Alex's 15mo check-up when I knew something was wrong. That pedi told me that all children develop differently, not to worry, and not to compare Alex to other kids his age. This misinformation cost us precious time, and Alex did not get into early intervention until he was 3. This was shortly after we had moved and changed doctors. Dr. R saw the signs and the immediate need for Alex to be evaluated. I am forever in her debt. So, long story short (too late!) I am sweating Emily's appointment.
Second reason I must have had that dream was that I have been giving much thought to the vaccine issue. I have never bought into the mercury scare, but I have always thought there had to be some connect between autism and vaccines. Even before I read about the settlement case, I thought allergies had to be part of the puzzle. Then I started thinking about Alex and Emily's issues. From a very early age, Alex was different. If his autism was exacerbated by the vaccines, then it must have been from the earliest set of them. Emily, on the other hand, seemed to be developing normally. She spoke early, interacted beautifully, and other than her terrible allergy/gi issues, she was developing normally. When we moved here, I can remember telling my husband that I was so happy that we had a child without developmental delays. (Our middle child, Laura, has significant speech/processing delays that have gotten much better in the last 2 years.) Sometime between then and Emily's 2yr old check-up, we started to lose her. The only significant event in that time (again, other than her continuing GI issues) was the vaccination. Alex establishes the family predisposition, and Emily's normal development followed by abnormal development establishes that there was an event. I'm going to look through Emily's shot records and attempt to get her entire medical records and see what I can find.
I know why I dreamed this. First, Emily's 3yr old check-up is on Monday. This is the first pediatrician appointment since her diagnosis, and this is with a new pediatrician. I want to discuss her development, not just her health. Last year, her previous pediatrician did not want to discuss anything related to her developmental delays or speech with anything more than, "Lets wait and see." It was an eerie parallel to Alex's 15mo check-up when I knew something was wrong. That pedi told me that all children develop differently, not to worry, and not to compare Alex to other kids his age. This misinformation cost us precious time, and Alex did not get into early intervention until he was 3. This was shortly after we had moved and changed doctors. Dr. R saw the signs and the immediate need for Alex to be evaluated. I am forever in her debt. So, long story short (too late!) I am sweating Emily's appointment.
Second reason I must have had that dream was that I have been giving much thought to the vaccine issue. I have never bought into the mercury scare, but I have always thought there had to be some connect between autism and vaccines. Even before I read about the settlement case, I thought allergies had to be part of the puzzle. Then I started thinking about Alex and Emily's issues. From a very early age, Alex was different. If his autism was exacerbated by the vaccines, then it must have been from the earliest set of them. Emily, on the other hand, seemed to be developing normally. She spoke early, interacted beautifully, and other than her terrible allergy/gi issues, she was developing normally. When we moved here, I can remember telling my husband that I was so happy that we had a child without developmental delays. (Our middle child, Laura, has significant speech/processing delays that have gotten much better in the last 2 years.) Sometime between then and Emily's 2yr old check-up, we started to lose her. The only significant event in that time (again, other than her continuing GI issues) was the vaccination. Alex establishes the family predisposition, and Emily's normal development followed by abnormal development establishes that there was an event. I'm going to look through Emily's shot records and attempt to get her entire medical records and see what I can find.
Thursday, March 27, 2008
Spring Break
This has been a great week. My husband has had the week off, and now my sister and her family are here visiting. We've had Wii tournaments and snowball fights, pizza and homemade pound cake with fresh strawberries and cream. Sheer heaven on all counts! Alex adores his two older boy cousins. I love having my sister here. They got in late last night, and we stayed up talking until 4:30 this morning. I've had several cups of coffee, but I am still a zombie!
=0)
Someone from Autism Speaks just called, and she is sending me the First 100 Days kit and adding in local resources. I orginially heard about Autism Speaks when my church was setting up the new special needs ministry. The director came to talk to us, and she impressed me completely. She has children with autism, and her level of involvement with them, the autism community, and with the outreach of Autism Speaks amazed me. It made me wonder how one woman could do so much for so many.
At times I feel completely overwhelmed. And then at other times, I feel like I should and could do more or share more or join more. My husband is always telling me to cut myself some slack. He's right, there's time.
=0)
Someone from Autism Speaks just called, and she is sending me the First 100 Days kit and adding in local resources. I orginially heard about Autism Speaks when my church was setting up the new special needs ministry. The director came to talk to us, and she impressed me completely. She has children with autism, and her level of involvement with them, the autism community, and with the outreach of Autism Speaks amazed me. It made me wonder how one woman could do so much for so many.
At times I feel completely overwhelmed. And then at other times, I feel like I should and could do more or share more or join more. My husband is always telling me to cut myself some slack. He's right, there's time.
Wednesday, March 26, 2008
Autistic Student Handcuffed For Singing In Class
“The bottom line he's in phys ed. And all the kids are making noise yelling, screaming and talking and he gets singled out for going 'la-la-la?'”
The parents of an autistic San Jose, California sixth-grader are expressing outrage that their son was put in handcuffs because he would not leave a class. via WLBZ
In a related article, this Gunner Moody's mother reports that she has gotten many negative responses about her son's IEP from his teachers, including this little gem, "I don't do IEPs." She relayed other incidents. "Prior to attending Bret Harte, Gunnar had been a student at Booksin Elementary where Moody felt his problems were misunderstood. She told of incidents that would hamper any child’s development including being locked out of his kindergarten room, being held down by an aide so hard that there were red marks on his body afterwards and at one open house a picture of a dog house with Gunnar’s picture inside. “His counselor, his own behavioral therapist put his picture in there. The principal saw my horrified look and immediately had it removed,” Moody said." (article written by Carol Rosen)
Teachers set the tone. They can make or break a child. Alex had a fabulous kindergarten teacher. She was a speech therapist for the special education department, and after working with these children in bursts as a speech therapist, she decided that she wanted to work with them full-time as a teacher. She had passion. And, she had help. In a classroom of 15 students or less, she had 2 full-time parapros. Alex thrived in her care.
Fast forward to this year, and things changed. On the very first day, someone yelled at Alex. He came home and quoted it verbatim and with the same intensity and emotion: "STOP SHAKING THE TABLE." He couldn't tell me who said this, but it scared him. I will never forget his voice or his face as he told me that. A few weeks later, Alex got in trouble for hitting a 3rd grader on the playground. Two 3rd graders said that they were "helping Alex" when he hit them. I still don't know what happened that day because the school's account of it changed every time I enquired, but I do know that he was again completely frightened. I started to lose my boy.
It is heartbreaking to watch your precious son spiral down into fear and despair. To see his emotionless face emerging from the school bus, silent and deeply unhappy. To cry and to beg to stay home. To get physically ill. To stop interacting with friends and family. I read a lot about childhood depression. I ran across something that made a lot of sense to me. True depression is a chemical imbalance that can be addressed by medicine or therapy, but it rarely strikes children as young as Alex. What he was experiencing was completely situational. When we finally removed him from the situation, he got well.
I digress. This year, in first grade special education, Alex's teacher had 13 students and one aide. It was a cross-categorical classroom that served all disabilities with the exception of the moderately CI children who had a classroom of their own. Thirteen IEPs, one teacher and one sour parapro who never smiled. Alex hid from her. I don't blame Alex's teacher. I think she was doing the best she could with what she had. Every time I saw her though, she would comment on how nice it was for me to stay home and how she wished she could do that or how she also had a 1st grader and wished she had more time with him or with her baby girl.
I don't think anyone is up for this type of challenge. How can one teacher manage the wildly diverse IEPs of that many students? Answer: she can't. Not without casualties like my son. Her style was great for the students with emotional impairments--firm, loud, and direct. To my son, she was a screamer, bullyish, and most of all scary. Yet, this is what our district says is the best placement for any child who needs a modified curriculum. Lumped together, given the exact same curriculum, exact same treatment. I've been told a few IEP meetings that our state has decided that allowing a child to be mainstreamed with an aide is the "most restrictive environment." Again, I cry foul. It might be the most expensive environment, but definitely not the most restrictive. I can't imagine anything short of an institution would be more restrictive than the environment he was in.
There are parts of the country that do right by special education students, but I think they are the exception. Teachers like the ones in Gunnar Moody's school are not adequately prepared or trained to handle situations like his, and the result is devastating to the children. People are naturally scared of the unknown or uncomfortable, but at the end of the day, and at the end of that IEP, this is a CHILD. A real child with real needs, real feelings, and the right to an appropriate education free of discrimination and bias.
“The bottom line he's in phys ed. And all the kids are making noise yelling, screaming and talking and he gets singled out for going 'la-la-la?'”
The parents of an autistic San Jose, California sixth-grader are expressing outrage that their son was put in handcuffs because he would not leave a class. via WLBZ
In a related article, this Gunner Moody's mother reports that she has gotten many negative responses about her son's IEP from his teachers, including this little gem, "I don't do IEPs." She relayed other incidents. "Prior to attending Bret Harte, Gunnar had been a student at Booksin Elementary where Moody felt his problems were misunderstood. She told of incidents that would hamper any child’s development including being locked out of his kindergarten room, being held down by an aide so hard that there were red marks on his body afterwards and at one open house a picture of a dog house with Gunnar’s picture inside. “His counselor, his own behavioral therapist put his picture in there. The principal saw my horrified look and immediately had it removed,” Moody said." (article written by Carol Rosen)
Teachers set the tone. They can make or break a child. Alex had a fabulous kindergarten teacher. She was a speech therapist for the special education department, and after working with these children in bursts as a speech therapist, she decided that she wanted to work with them full-time as a teacher. She had passion. And, she had help. In a classroom of 15 students or less, she had 2 full-time parapros. Alex thrived in her care.
Fast forward to this year, and things changed. On the very first day, someone yelled at Alex. He came home and quoted it verbatim and with the same intensity and emotion: "STOP SHAKING THE TABLE." He couldn't tell me who said this, but it scared him. I will never forget his voice or his face as he told me that. A few weeks later, Alex got in trouble for hitting a 3rd grader on the playground. Two 3rd graders said that they were "helping Alex" when he hit them. I still don't know what happened that day because the school's account of it changed every time I enquired, but I do know that he was again completely frightened. I started to lose my boy.
It is heartbreaking to watch your precious son spiral down into fear and despair. To see his emotionless face emerging from the school bus, silent and deeply unhappy. To cry and to beg to stay home. To get physically ill. To stop interacting with friends and family. I read a lot about childhood depression. I ran across something that made a lot of sense to me. True depression is a chemical imbalance that can be addressed by medicine or therapy, but it rarely strikes children as young as Alex. What he was experiencing was completely situational. When we finally removed him from the situation, he got well.
I digress. This year, in first grade special education, Alex's teacher had 13 students and one aide. It was a cross-categorical classroom that served all disabilities with the exception of the moderately CI children who had a classroom of their own. Thirteen IEPs, one teacher and one sour parapro who never smiled. Alex hid from her. I don't blame Alex's teacher. I think she was doing the best she could with what she had. Every time I saw her though, she would comment on how nice it was for me to stay home and how she wished she could do that or how she also had a 1st grader and wished she had more time with him or with her baby girl.
I don't think anyone is up for this type of challenge. How can one teacher manage the wildly diverse IEPs of that many students? Answer: she can't. Not without casualties like my son. Her style was great for the students with emotional impairments--firm, loud, and direct. To my son, she was a screamer, bullyish, and most of all scary. Yet, this is what our district says is the best placement for any child who needs a modified curriculum. Lumped together, given the exact same curriculum, exact same treatment. I've been told a few IEP meetings that our state has decided that allowing a child to be mainstreamed with an aide is the "most restrictive environment." Again, I cry foul. It might be the most expensive environment, but definitely not the most restrictive. I can't imagine anything short of an institution would be more restrictive than the environment he was in.
There are parts of the country that do right by special education students, but I think they are the exception. Teachers like the ones in Gunnar Moody's school are not adequately prepared or trained to handle situations like his, and the result is devastating to the children. People are naturally scared of the unknown or uncomfortable, but at the end of the day, and at the end of that IEP, this is a CHILD. A real child with real needs, real feelings, and the right to an appropriate education free of discrimination and bias.
Tuesday, March 25, 2008
We started the process to get Emily into the PLAY Project!
Our insurance does not cover any therapy unless it is rehabilitative in nature. So, all of Alex's and Emily's needed speech, OT, and PT is not covered. Facing tens of thousands of dollars out of pocket, which we don't have and can't get, we started looking into alternatives. Our county offers services on a sliding scale, and today we met with an agency that has the PLAY Project. As it stands, we will be paying $62/mo out of pocket for Emily's therapies. A huge relief and answer to prayer!
Life on a resident's salary usually pretty much sucks, but today it was a benefit.
=o)
Our insurance does not cover any therapy unless it is rehabilitative in nature. So, all of Alex's and Emily's needed speech, OT, and PT is not covered. Facing tens of thousands of dollars out of pocket, which we don't have and can't get, we started looking into alternatives. Our county offers services on a sliding scale, and today we met with an agency that has the PLAY Project. As it stands, we will be paying $62/mo out of pocket for Emily's therapies. A huge relief and answer to prayer!
Life on a resident's salary usually pretty much sucks, but today it was a benefit.
=o)
Here is Emily's diagnosis letter from our developmental pediatrician. It says exactly what I can't find the words to say. It is edited for identifying elements only.
Dear Dr. M:
I had the pleasure of consulting on your patient, Emily, a 2-year-11-month-old girl whose parents have brought her to the Center for Developmental and Behavioral Pediatrics for the evaluation of her development.
Emily has qualified for services through the early intervention system based on language delays, but she is only receiving about one hour per week of programming. Her parents are seeking a diagnosis for her delays. She does have delays in language, problems with social engageability, and dominating interests.
In terms of her language, she has only about 100 words or less, and she mostly talks in one-word phrases, which is clearly delayed for a 2-year-11-month-old girl. She does some pointing now. There was awhile when she was not indicating what she wanted and would just cry. She does follow most “give” and “get” commands fairly readily, but she cannot answer questions that are more abstract such as, “What are you doing?” Most of the time she takes her parents’ hands to get what she wants. She will nod and seem to indicate what she wants, but she does not really make meaningful choices. She cannot point to various actions that are happening on the page of a book. She makes some animal sounds and imitates just her favorites, which include horses, dogs, and cats. Altogether, there is very little spontaneous speech and a real difficulty with interactions.
Socially, she does not interact the way a child her age should. She likes being around people but is often doing more parallel play. She can do some simply pretend play such as running a train on a track, feeding a baby doll, or putting a phone up to her ear. She can sometimes be shy, manipulative, and mischievous, which indicates some awareness of social norms. For instance, she will go after her siblings’ toys to make them mad. She also intrudes on people’s personal space, but in this case, she does not seem to understand that this is a problem. She does like rough-housing, chase games, and simple sensorimotor play.
She has a number of dominating interests. She does like to play by herself. She likes horses, cats, and dogs. She will pretend to be different animals. She will play with little characters and she will do so at length without referencing or including other people.
She does have behavioral issues. She is quick to become frustrated but she recovers fairly quickly. She can be intrusive and purposefully aggravating. She will throw temper tantrums frequently throughout the day.
She does not have much in the way of sensory issues. She has fairly good fine and gross motor control. She does not like adults to sing. She is very oral and puts things in her mouth. She does not mind loud noises. She likes to be barefoot.
PAST MEDICAL HISTORY: Past medical history reveals that her mother’s pregnancy was characterized by the loss of a twin early in the pregnancy with subsequent threatened premature labor requiring terbutaline. The mother also took Zofran and Phenergan for nausea and vomiting. Eventually, the pregnancy went to term and Emily was born by normal induced vaginal delivery. Subsequently, there was one hospitalization for rotavirus. Emily did suffer from failure to thrive beginning at around 5-8 months. She was subsequently placed on Neocate formula until she was over two years old. Subsequently, she “turned the corner” and did better. But in the meantime, she seemed to have food allergies to all kinds of foods that resulted in choking, turning blue, vomiting, diarrhea, as well as bloating. She was finally diagnosed as having allergic colitis.
REVIEW OF SYSTEMS: Review of systems reveals that she now can eat a variety of foods. She is a big milk drinker, which is possibly associated with frequent upper respiratory infections. She snores, she mouth breathes, and she drools. She “needs her adenoids out.” She sleeps fairly well most of the time but does wake up occasionally. She has some trouble falling asleep. She has no problem with urination or defecation now, but she is not toilet-trained. She has no problems with hearing or vision.
FAMILY HISTORY: Family history is significant for autistic-like symptoms in a maternal cousin, and one maternal cousin who also has some mild cognitive delays. On the father’s side of the family, there are two paternal aunts, one on each side of the father’s family, who have cognitive impairments. Emily’s brother, Alex, was diagnosed by me as having pervasive developmental disorder bordering on Asperger’s syndrome, as well as attention-deficit disorder.
SOCIAL HISTORY: Social history reveals a stable nuclear family with fairly good social support. The dad is a medical resident ***. The mother is going to school for her Masters in education, which she is doing online. The family moved from *** for the father’s residency in May 2006. Overall, Emily is described as somewhat challenging. She has a difficult, fairly stubborn temperament. She is not particularly easygoing.
OBSERVATIONS IN THE OFFICE SETTING: Observations in the office setting revealed Emily to be an alert, well-developed, well-nourished-appearing, young girl who was in no apparent distress. She had no real dysmorphic features, although she does have a small midface and somewhat hyperteloric eyes. I thought that her right pupil seemed a little bit enlarged compared to her left pupil. She definitely has a large head circumference. She took a little while to warm up but she eventually did so, and I got to see a good sample of her ability to interact. She was not typical in her social wherewithal, and her language was poor for age. She did interact with her brother, mother, and eventually me with some good initiation, some simple use of language, and some ability to sustain interactions. However, most of her play involved carrying a little horse around throughout most of the time spent. She did not have the type of eye contact or ability to play that would be typical of a nearly 3-year-old girl.
ASSESSMENT: My assessment is that Emily May is a 2-year-11-month-old girl with a significant history of delays in language, problems with social interactions, and repetitive behaviors that qualifies her as being on the autistic spectrum. It is my opinion that she has a mild autistic disorder bordering on pervasive developmental disorder not otherwise specified.
Today, I made an audiotape for the family that emphasized importance of the following set of interventions based on the findings of the 2001 National Research Council report (http://www.nap.edu/books/0309072697/html):
Twenty to 25 hours per week of intervention
With a one-on-one or one-on-two teacher-to-child ratio
That is engaging
Has a strategic direction
And starts early (between the ages of 18 months to 5 years)
Typically these interventions include:
special education,
speech and language therapy and
occupational therapy.
Intensive behavioral/developmental interventions of either the ABA or DIR types are essential! I suggested that the family enroll Emily in the P.L.A.Y. Project, which will train the family to provide 2 hours per day of intensive intervention.
I provided a packet of information on all of these interventions and highly recommended two websites:
1. The Your Child website (http://www.med.umich.edu/1libr/yourchild/autism.htm), an important and reliable source of information on autistic spectrum disorders as well as other developmental/behavioral issues.
2. The P.L.A.Y. Project website (http://www.playproject.org) where families can obtain information on our play-based approach.
Today, I am recommending that the family participate in The P.L.A.Y. Project through our center here. I also recommended that the family look into The HOPE Center at ***, and I encouraged them to enroll Emily in the special education preschool program, as well as seeking an extended school year.
I would like to see Emily back in six months.
I thank you very much for allowing me to consult on her.
Sincerely,
R. S., M.D.
Medical Director
Dear Dr. M:
I had the pleasure of consulting on your patient, Emily, a 2-year-11-month-old girl whose parents have brought her to the Center for Developmental and Behavioral Pediatrics for the evaluation of her development.
Emily has qualified for services through the early intervention system based on language delays, but she is only receiving about one hour per week of programming. Her parents are seeking a diagnosis for her delays. She does have delays in language, problems with social engageability, and dominating interests.
In terms of her language, she has only about 100 words or less, and she mostly talks in one-word phrases, which is clearly delayed for a 2-year-11-month-old girl. She does some pointing now. There was awhile when she was not indicating what she wanted and would just cry. She does follow most “give” and “get” commands fairly readily, but she cannot answer questions that are more abstract such as, “What are you doing?” Most of the time she takes her parents’ hands to get what she wants. She will nod and seem to indicate what she wants, but she does not really make meaningful choices. She cannot point to various actions that are happening on the page of a book. She makes some animal sounds and imitates just her favorites, which include horses, dogs, and cats. Altogether, there is very little spontaneous speech and a real difficulty with interactions.
Socially, she does not interact the way a child her age should. She likes being around people but is often doing more parallel play. She can do some simply pretend play such as running a train on a track, feeding a baby doll, or putting a phone up to her ear. She can sometimes be shy, manipulative, and mischievous, which indicates some awareness of social norms. For instance, she will go after her siblings’ toys to make them mad. She also intrudes on people’s personal space, but in this case, she does not seem to understand that this is a problem. She does like rough-housing, chase games, and simple sensorimotor play.
She has a number of dominating interests. She does like to play by herself. She likes horses, cats, and dogs. She will pretend to be different animals. She will play with little characters and she will do so at length without referencing or including other people.
She does have behavioral issues. She is quick to become frustrated but she recovers fairly quickly. She can be intrusive and purposefully aggravating. She will throw temper tantrums frequently throughout the day.
She does not have much in the way of sensory issues. She has fairly good fine and gross motor control. She does not like adults to sing. She is very oral and puts things in her mouth. She does not mind loud noises. She likes to be barefoot.
PAST MEDICAL HISTORY: Past medical history reveals that her mother’s pregnancy was characterized by the loss of a twin early in the pregnancy with subsequent threatened premature labor requiring terbutaline. The mother also took Zofran and Phenergan for nausea and vomiting. Eventually, the pregnancy went to term and Emily was born by normal induced vaginal delivery. Subsequently, there was one hospitalization for rotavirus. Emily did suffer from failure to thrive beginning at around 5-8 months. She was subsequently placed on Neocate formula until she was over two years old. Subsequently, she “turned the corner” and did better. But in the meantime, she seemed to have food allergies to all kinds of foods that resulted in choking, turning blue, vomiting, diarrhea, as well as bloating. She was finally diagnosed as having allergic colitis.
REVIEW OF SYSTEMS: Review of systems reveals that she now can eat a variety of foods. She is a big milk drinker, which is possibly associated with frequent upper respiratory infections. She snores, she mouth breathes, and she drools. She “needs her adenoids out.” She sleeps fairly well most of the time but does wake up occasionally. She has some trouble falling asleep. She has no problem with urination or defecation now, but she is not toilet-trained. She has no problems with hearing or vision.
FAMILY HISTORY: Family history is significant for autistic-like symptoms in a maternal cousin, and one maternal cousin who also has some mild cognitive delays. On the father’s side of the family, there are two paternal aunts, one on each side of the father’s family, who have cognitive impairments. Emily’s brother, Alex, was diagnosed by me as having pervasive developmental disorder bordering on Asperger’s syndrome, as well as attention-deficit disorder.
SOCIAL HISTORY: Social history reveals a stable nuclear family with fairly good social support. The dad is a medical resident ***. The mother is going to school for her Masters in education, which she is doing online. The family moved from *** for the father’s residency in May 2006. Overall, Emily is described as somewhat challenging. She has a difficult, fairly stubborn temperament. She is not particularly easygoing.
OBSERVATIONS IN THE OFFICE SETTING: Observations in the office setting revealed Emily to be an alert, well-developed, well-nourished-appearing, young girl who was in no apparent distress. She had no real dysmorphic features, although she does have a small midface and somewhat hyperteloric eyes. I thought that her right pupil seemed a little bit enlarged compared to her left pupil. She definitely has a large head circumference. She took a little while to warm up but she eventually did so, and I got to see a good sample of her ability to interact. She was not typical in her social wherewithal, and her language was poor for age. She did interact with her brother, mother, and eventually me with some good initiation, some simple use of language, and some ability to sustain interactions. However, most of her play involved carrying a little horse around throughout most of the time spent. She did not have the type of eye contact or ability to play that would be typical of a nearly 3-year-old girl.
ASSESSMENT: My assessment is that Emily May is a 2-year-11-month-old girl with a significant history of delays in language, problems with social interactions, and repetitive behaviors that qualifies her as being on the autistic spectrum. It is my opinion that she has a mild autistic disorder bordering on pervasive developmental disorder not otherwise specified.
Today, I made an audiotape for the family that emphasized importance of the following set of interventions based on the findings of the 2001 National Research Council report (http://www.nap.edu/books/0309072697/html):
Twenty to 25 hours per week of intervention
With a one-on-one or one-on-two teacher-to-child ratio
That is engaging
Has a strategic direction
And starts early (between the ages of 18 months to 5 years)
Typically these interventions include:
special education,
speech and language therapy and
occupational therapy.
Intensive behavioral/developmental interventions of either the ABA or DIR types are essential! I suggested that the family enroll Emily in the P.L.A.Y. Project, which will train the family to provide 2 hours per day of intensive intervention.
I provided a packet of information on all of these interventions and highly recommended two websites:
1. The Your Child website (http://www.med.umich.edu/1libr/yourchild/autism.htm), an important and reliable source of information on autistic spectrum disorders as well as other developmental/behavioral issues.
2. The P.L.A.Y. Project website (http://www.playproject.org) where families can obtain information on our play-based approach.
Today, I am recommending that the family participate in The P.L.A.Y. Project through our center here. I also recommended that the family look into The HOPE Center at ***, and I encouraged them to enroll Emily in the special education preschool program, as well as seeking an extended school year.
I would like to see Emily back in six months.
I thank you very much for allowing me to consult on her.
Sincerely,
R. S., M.D.
Medical Director
Tuesday, March 11, 2008
Today was a complete rollercoaster. Emily was supposed to be evaluated for the autism program through the school district today. The social worker didn't show up, so this entailed the school psychologist observing her in the gross motor room--Emily's favorite place in the whole world. The three comments that the psychologist made other than questions were, "Her eye contact is great," "That's great, she let you know her sock was bothering her," and "Well, I definitely wouldn't pick her out of crowd."
Emily really did a beautiful job in the gross motor room. She was smiling and happy, used her words, waited somewhat patiently. It was hard to be so proud of her and yet so frustrated at the same time! If the psychologist had only observed her in the group-sing part or as she transitioned from something fun to something that required her to do something that was difficult or new! In the gym, it was melt-down after melt-down, then I was supposed to leave to attend a meeting with the district people. No one was paying attention to Emily, and I was afraid to leave her. I finally got the PT's attention and showed her where Emily was playing--all by herself. The aunt of one of the kids was in the meeting being a complete pain in the rear--"Well, he doesn't do XYZ, but that doesn't mean he is autistic." I passed this woman and the director of the autism program in the hall, and the director was saying, "He is very aloof, and this is a red flag..." That bothered me. The kid's parents were in there too, and they didn't say a word.
So, we left. Another week gone and still no closer to a placement. I had a bad feeling going in to today's events, and a worse one after.
On a positive note, Alex had his follow-up visit with the dev pedi. I am so pleased with the progress Alex has made lately! The secretary (wonderful woman!) also told me about another resource for the play therapy that is free to residents of our county! I made a call, and I have an appointment next week to see what we can do. If this goes through, it will be such a relief because I can use the training I get for both Emily and Alex.
Alex started therapuetic listening today. His OT said he loved it, and she wants to see how he does with it a few more times in the clinic before she starts him on a home program. I read the study she gave me, and the whole program looks so promising.
But, now I am sitting here trying to digest all this information and emotion, and I am feeling overwhelmed and alone again.
Emily really did a beautiful job in the gross motor room. She was smiling and happy, used her words, waited somewhat patiently. It was hard to be so proud of her and yet so frustrated at the same time! If the psychologist had only observed her in the group-sing part or as she transitioned from something fun to something that required her to do something that was difficult or new! In the gym, it was melt-down after melt-down, then I was supposed to leave to attend a meeting with the district people. No one was paying attention to Emily, and I was afraid to leave her. I finally got the PT's attention and showed her where Emily was playing--all by herself. The aunt of one of the kids was in the meeting being a complete pain in the rear--"Well, he doesn't do XYZ, but that doesn't mean he is autistic." I passed this woman and the director of the autism program in the hall, and the director was saying, "He is very aloof, and this is a red flag..." That bothered me. The kid's parents were in there too, and they didn't say a word.
So, we left. Another week gone and still no closer to a placement. I had a bad feeling going in to today's events, and a worse one after.
On a positive note, Alex had his follow-up visit with the dev pedi. I am so pleased with the progress Alex has made lately! The secretary (wonderful woman!) also told me about another resource for the play therapy that is free to residents of our county! I made a call, and I have an appointment next week to see what we can do. If this goes through, it will be such a relief because I can use the training I get for both Emily and Alex.
Alex started therapuetic listening today. His OT said he loved it, and she wants to see how he does with it a few more times in the clinic before she starts him on a home program. I read the study she gave me, and the whole program looks so promising.
But, now I am sitting here trying to digest all this information and emotion, and I am feeling overwhelmed and alone again.
Thursday, March 06, 2008
I don't even know where to go with this blog anymore. I feel like my entire life is all about autism now. Last week, we took our baby to Alex's developmental pediatrician. We were worried because she turns 3 soon, and her issues are persisting, and some are worsening. As of right now, she is considered as having high-functioning autism. With very intense therapy (at least 3 hrs/day), she can probably go to a regular first grade. Our dr is amazing, and so full of hope, but this was so much to take in. The diagnosis didn't really surprise us, although I was thinking more PDD-NOS than autism, but the level of intervention that needs to happen NOW took me back. The dr did not mention all of this when he first saw Alex in September (I think it was) last year because Alex was already six. I just wonder how different things could have been if he had gotten intense, appropriate therapy at a much earlier age.
Then I remember taking Alex to his 15mo check-up and telling his then pedi about his issues. He totally dismissed me and said that I couldn't compare Alex to other kids because they all develop at different levels. I knew then that something was very wrong, and it took until Alex was almost 3.5 to even start early intervention. We switched pedi's around this time, and our new pedi immediately had me contact Early Intervention. When the school district assessed him as mild-moderate autistic, I refused to let them label him as such. So many other people around me told me he was not autistic, and I took that to heart. He did get EI, just not a specific program for autism. Did I do him a disservice all those years ago? We won't ever know, but my heart is breaking for those decisions in light of the new information we got for Emily. I just did not know any better. Please God, don't let my son blame me. Let him know that I have and always will love him and try my very best to do what is right by him. Please God, let him know this!
Therapy is not cheap. One program for Emily (the P.L.A.Y. Project) is $3,900 and another one (ABA based) is $9,600. If Emily is accepted into our school district's autism program (which our dev pedi helped to set up!), she will be getting a combination of PLAY and ABA. I still want to do at least the home-based PLAY Project because I think that will help Alex as well. At this point, I am praying for a miracle to be able to afford this. I have 3 more quarters to go before I finish my Masters, and I can start making some money. I am a bit panicked because Emily's therapy cannot wait for 3 quarters--it has to start now. I spent most of yesterday morning applying for grants, and I am praying that we get them.
Anyway, I need this blog to get all of this out of my system. I feel very alone most days, and I really don't have anyone to talk to about all of this.
Then I remember taking Alex to his 15mo check-up and telling his then pedi about his issues. He totally dismissed me and said that I couldn't compare Alex to other kids because they all develop at different levels. I knew then that something was very wrong, and it took until Alex was almost 3.5 to even start early intervention. We switched pedi's around this time, and our new pedi immediately had me contact Early Intervention. When the school district assessed him as mild-moderate autistic, I refused to let them label him as such. So many other people around me told me he was not autistic, and I took that to heart. He did get EI, just not a specific program for autism. Did I do him a disservice all those years ago? We won't ever know, but my heart is breaking for those decisions in light of the new information we got for Emily. I just did not know any better. Please God, don't let my son blame me. Let him know that I have and always will love him and try my very best to do what is right by him. Please God, let him know this!
Therapy is not cheap. One program for Emily (the P.L.A.Y. Project) is $3,900 and another one (ABA based) is $9,600. If Emily is accepted into our school district's autism program (which our dev pedi helped to set up!), she will be getting a combination of PLAY and ABA. I still want to do at least the home-based PLAY Project because I think that will help Alex as well. At this point, I am praying for a miracle to be able to afford this. I have 3 more quarters to go before I finish my Masters, and I can start making some money. I am a bit panicked because Emily's therapy cannot wait for 3 quarters--it has to start now. I spent most of yesterday morning applying for grants, and I am praying that we get them.
Anyway, I need this blog to get all of this out of my system. I feel very alone most days, and I really don't have anyone to talk to about all of this.
Friday, February 22, 2008
What a terrible start. Alex went to bed earlier than usual last night, but he still woke up later than usual. He said he was sick and couldn't do school. Every move Emily made started him shrieking. Emily was more clingy than usual, and she was running a fever--poor little thing. I gave Alex his medicine and breakfast and told him school was starting in 30 mins. We made it through phonics--barely. I used the music from SSW&R, and Emily decided that she did not want to hear me sing, so she threw a fit. Meanwhile, Alex was getting more aggitated. By the time we sat down for Reading I, he had had enough of Miss Emily. I finally resorted to a video in the other room for her, and she fell asleep very shortly. I know this means she is not feeling well.
Even with Emily out of the picture, Alex was not attending and was very irritable. He got something in his eye, and the screaming began. He would not even let me look at it. I took him to my room, told him to lay down and to come and get me when he was calm and ready for me to look at his eye. After about 10mins (aka an eternity) of screaming and fit-throwing, he came out and let me look. Whatever was in his eye was gone, thanks to the tears. We talked for a few minutes, and I asked him if he was ready to finish his work. He told me he didn't want to do school because "it takes a long day." I explained that if he could not work with me at home, he had to go back to regular school. I also told him that at home, he gets through his work much faster, and he could even be finished before Laura got home if he started soon. That perked him up--he loves to finish first! The rest of the lesson went relatively smoothly, even though after he subject, he tried to talk me into skipping something.
It was so hard knowing what to do today. I want to keep school fun, but at the same time, we are both going to have to learn how to make it through challenging days and days where he isn't feeling well. I also want to make sure that I don't lose my cool with him--that was extremely hard today when he was throwing a fit about Emily or screaming about his eye. I am glad (and a bit amazed) that I did keep my cool through all that. It was bad enough that I wanted to cry.
Alex is now happily playing with his HotWheels set, and he even let me use one of his cars. I got a big, "I love you, Mom!" with a smile. I'm calling today a success.
Even with Emily out of the picture, Alex was not attending and was very irritable. He got something in his eye, and the screaming began. He would not even let me look at it. I took him to my room, told him to lay down and to come and get me when he was calm and ready for me to look at his eye. After about 10mins (aka an eternity) of screaming and fit-throwing, he came out and let me look. Whatever was in his eye was gone, thanks to the tears. We talked for a few minutes, and I asked him if he was ready to finish his work. He told me he didn't want to do school because "it takes a long day." I explained that if he could not work with me at home, he had to go back to regular school. I also told him that at home, he gets through his work much faster, and he could even be finished before Laura got home if he started soon. That perked him up--he loves to finish first! The rest of the lesson went relatively smoothly, even though after he subject, he tried to talk me into skipping something.
It was so hard knowing what to do today. I want to keep school fun, but at the same time, we are both going to have to learn how to make it through challenging days and days where he isn't feeling well. I also want to make sure that I don't lose my cool with him--that was extremely hard today when he was throwing a fit about Emily or screaming about his eye. I am glad (and a bit amazed) that I did keep my cool through all that. It was bad enough that I wanted to cry.
Alex is now happily playing with his HotWheels set, and he even let me use one of his cars. I got a big, "I love you, Mom!" with a smile. I'm calling today a success.
Thursday, February 21, 2008
Alex did very well today. I did notice that he was having difficulty staying still, but he did focus. Have to keep an eye on that. With the additional subjects, school is taking about an hour longer. I broke up the day with lunch time, and that seemed to be good for him. I'm trying techniques suggested by his OT about slowing his speech and his body movements down. I take for granted that I can either speed up or slow down whenever I wish. With Alex, he is on high speed all the time, and slowing down is challenging. I always reward him by letting him go fast at the end--he loves it.
On the other hand, I've been trying to do the deep breathing and other calming techniques that the therapist recommends--Alex wants nothing to do with those!
Last night we went to Sparks for the first time in months. Alex was hesitant at first, but when he saw the kids running relays, he jumped right in as I escaped upstairs. I came back to check on him, and one of the leaders told me that Alex was participating in the small groups! When I came down to get him and Laura at the end, he was grinning and playing happily with some of the other boys. He even asked me if he could stay longer.
On the other hand, I've been trying to do the deep breathing and other calming techniques that the therapist recommends--Alex wants nothing to do with those!
Last night we went to Sparks for the first time in months. Alex was hesitant at first, but when he saw the kids running relays, he jumped right in as I escaped upstairs. I came back to check on him, and one of the leaders told me that Alex was participating in the small groups! When I came down to get him and Laura at the end, he was grinning and playing happily with some of the other boys. He even asked me if he could stay longer.
Wednesday, February 20, 2008
Alex isn't feeling well today. And in combination with the fact that he has been on mid-winter break for 2 days, he struggled a bit today with the length of his lessons. The odd thing is that we got through everything in just slightly more time than usual. We added the reading and seatwork from the curriculum which replaced the reading that I was adding myself. By the end, he was settled, but definitely DONE for the day.
=o)
Cursive continues to amaze me. Today we learned how to hook two cursive letters together. Alex loved it!
=o)
Cursive continues to amaze me. Today we learned how to hook two cursive letters together. Alex loved it!
Sunday, February 17, 2008
Just five days later, I am simply THRILLED with Alex's progress with both the new curriculum and with cursive! Cursive seems to have clicked with him! I am trying to make it as fun as possible with little sing-songy ways to present the letters. For instance, Alex's cursive "i" looked like an inverted "v" because he was spreading the letter out. I told him to "start with a tail, go up to the line, trace it back down, and end with a tail" all in a silly voice. It...was...magic! He has a tendency to want to rush through things, but I told him that writing was a time to be slow and careful. He takes such pride in his writing now!
Thursday was his genetics appointment. It went well, and I liked the doctors who examined him. The good news is that they could not pinpoint any genetic disorders upon the intial consultation. However, he does need an "echo" for a heart murmur they picked up, physical therapy for his hyper-flexibility issues, and he needs to see a pedi opthamologist. They are running tests on his bloodwork--specifically a microarray to test for chromosome issues. I was fairly freaked out by all this on Thursday, but I am much more calm now. Whatever happens with this, he is still our sweet, wonderful Alex.
Alex yelled at his therapist this week. I want this therapy to teach Alex how to tell us what he is feeling. He can express his emotions, but he can't really put a name to them if someone were to ask him what is wrong. (I really want Alex to be able to tell us what he is feeling and if something is bothering him--specifically. Right now, he only uses the terms angry and nervous interchangeably and inappropriately.) I think the therapist thinks we are trying to get Alex to express emotions. (Mental note, bring that up that little clarification next time!) Well, Alex handled all the wheedling very well until the guy asked him to draw a picture. He did it--very unhappily. Then Alex put the pencil behind his back and was sort of rubbing his back with it. The therapist looked shocked and almost grossed out, and he asked "Are you erasing your back?" Alex shouted-loudly--"I'M NOT DOING ANYTHING WITH MY BACK!" I was completely shocked that Alex shouted like that, and the therapist looks up at me so truimphantly like--"See! See! We got him to express emotion!"
I wish I was quick on my feet in situations like this, because right now this is so funny to me! The poor guy pulled me aside and said, "I think we are really making a connection." I just nodded dumbly, and now I'm thinking, "Dude, you are in the enemy camp now. You made the boy draw and then you made him yell at you."
=o)
Thursday was his genetics appointment. It went well, and I liked the doctors who examined him. The good news is that they could not pinpoint any genetic disorders upon the intial consultation. However, he does need an "echo" for a heart murmur they picked up, physical therapy for his hyper-flexibility issues, and he needs to see a pedi opthamologist. They are running tests on his bloodwork--specifically a microarray to test for chromosome issues. I was fairly freaked out by all this on Thursday, but I am much more calm now. Whatever happens with this, he is still our sweet, wonderful Alex.
Alex yelled at his therapist this week. I want this therapy to teach Alex how to tell us what he is feeling. He can express his emotions, but he can't really put a name to them if someone were to ask him what is wrong. (I really want Alex to be able to tell us what he is feeling and if something is bothering him--specifically. Right now, he only uses the terms angry and nervous interchangeably and inappropriately.) I think the therapist thinks we are trying to get Alex to express emotions. (Mental note, bring that up that little clarification next time!) Well, Alex handled all the wheedling very well until the guy asked him to draw a picture. He did it--very unhappily. Then Alex put the pencil behind his back and was sort of rubbing his back with it. The therapist looked shocked and almost grossed out, and he asked "Are you erasing your back?" Alex shouted-loudly--"I'M NOT DOING ANYTHING WITH MY BACK!" I was completely shocked that Alex shouted like that, and the therapist looks up at me so truimphantly like--"See! See! We got him to express emotion!"
I wish I was quick on my feet in situations like this, because right now this is so funny to me! The poor guy pulled me aside and said, "I think we are really making a connection." I just nodded dumbly, and now I'm thinking, "Dude, you are in the enemy camp now. You made the boy draw and then you made him yell at you."
=o)
Monday, February 11, 2008
Day 1 with the new curriculum:
We had a rough start. =o)
Alex wanted to blow through everything to get to the "prize box." (I made up a sticker chart for Alex to use as a schedule of daily events. As he finishes a task, he gets to put a sticker in that space. When he is finished for the day and gets all of his stickers, he gets to choose a small toy or a piece of candy.) I finally stopped the lesson and sat there. I told him calmly that I had all day, and I would sit there until he was ready to continue. Much to my relief, he did great after that.
I started Alex on cursive writing today. It was agonizing. However, I'm committing to this plan for 2 weeks. If at the end of those 2 weeks he is still as frustrated as he was today, I am going to switch back to manuscript. I feel that cursive may actually help him because he will not need to pick up his pencil as much and the letters b,d,p, and q are uniquely different. Time will tell, and I am not that concerned that Alex was resistant--he is resistant to anything new. I'm guessing that by Friday, he will be okay at least.
We worked on phonics, starting with the vowel sounds. He is still confusing I and E, so I am glad this curriculum is starting with these two letters. Then we did writing, math, poetry, and reading. This week is abreviated in the system, and next week we will add reading, seatwork (independent work), and activity time (science, art, or social studies). Alex seems to like the materials--they are fun and colorful. What a difference from the black and white sheets he was bringing home from school. Just adding color really appeals to him!
It is sunny today but COLD! Alex really wanted to go outside to play on his scooter, so we bundled up and braved the cold while we waited for Laura to get home. We've been missing the outdoors because of all the snow, and we had a frosty good time out there. (To illustrate how cold it really is here, today is trash day. The trash bags froze inside the trash containers, and the garbage guys couldn't get them out.)
We had a rough start. =o)
Alex wanted to blow through everything to get to the "prize box." (I made up a sticker chart for Alex to use as a schedule of daily events. As he finishes a task, he gets to put a sticker in that space. When he is finished for the day and gets all of his stickers, he gets to choose a small toy or a piece of candy.) I finally stopped the lesson and sat there. I told him calmly that I had all day, and I would sit there until he was ready to continue. Much to my relief, he did great after that.
I started Alex on cursive writing today. It was agonizing. However, I'm committing to this plan for 2 weeks. If at the end of those 2 weeks he is still as frustrated as he was today, I am going to switch back to manuscript. I feel that cursive may actually help him because he will not need to pick up his pencil as much and the letters b,d,p, and q are uniquely different. Time will tell, and I am not that concerned that Alex was resistant--he is resistant to anything new. I'm guessing that by Friday, he will be okay at least.
We worked on phonics, starting with the vowel sounds. He is still confusing I and E, so I am glad this curriculum is starting with these two letters. Then we did writing, math, poetry, and reading. This week is abreviated in the system, and next week we will add reading, seatwork (independent work), and activity time (science, art, or social studies). Alex seems to like the materials--they are fun and colorful. What a difference from the black and white sheets he was bringing home from school. Just adding color really appeals to him!
It is sunny today but COLD! Alex really wanted to go outside to play on his scooter, so we bundled up and braved the cold while we waited for Laura to get home. We've been missing the outdoors because of all the snow, and we had a frosty good time out there. (To illustrate how cold it really is here, today is trash day. The trash bags froze inside the trash containers, and the garbage guys couldn't get them out.)
Sunday, February 10, 2008
I ended up in Alex's Sunday School class today. I am the Sunday School partner for a little Kindergarten girl in our Special Needs ministry. Basically I just go with her to Sunday School and if she needs a break or other attention, I am right there dedicated to just her. Alex has a partner too, and today the 1st grade and the Kindergarten classes were combined, so I was sitting in Alex's room. He did really well, behavior-wise, but it is becoming increasingly more apparent that he is "different." He has been in this class for months, and yet he doesn't even look at the other little kids. He answered all the questions that his teacher asked him, and did exactly what he was told to do. I got to wondering if this is the version of Alex that his teacher saw. Polite and quiet, easily ignored and forgotten when you've got 12 other kids who are more needy and disruptive. As a Mom, I knew that the expressionless look on Alex's face was him withdrawing. I can see how a classroom teacher would absolutely love a kid like Alex and think that he was just being compliant.
We are going to have to seriously beef up his social interactions, specifically with play. I'm glad I got this opportunity to see it in action though, and I am feeling much better that the school portion is not going to hinder his social skills--he wasn't getting the right kind of social training anyway.
Alex's new curriculum arrived on Friday. I got my week's lesson plans together yesterday, and Alex and I went to Target to get some more supplies and prizes to use at school. I'm nervous, but sooooo excited about getting this really going!
We are going to have to seriously beef up his social interactions, specifically with play. I'm glad I got this opportunity to see it in action though, and I am feeling much better that the school portion is not going to hinder his social skills--he wasn't getting the right kind of social training anyway.
Alex's new curriculum arrived on Friday. I got my week's lesson plans together yesterday, and Alex and I went to Target to get some more supplies and prizes to use at school. I'm nervous, but sooooo excited about getting this really going!
Wednesday, February 06, 2008
The last two days have been really great with Alex. The frustrations seem to be easing, and he seems much happier. I am very pleased with his attention to his school work. Yesterday was library day, and Alex wanted to check out books on electricity. He got his very own library card and even checked out a special book for Laura. Today was Camera Wednesday, and we worked on a scrapbook page together about electricity. The pics are of Alex pulling the emergency cord for the garage door opener--he was thrilled!
=o)
I took him to the psychologist that the psychiatrist recommended yesterday, and I am hopeful that he can help us fill in some more blanks left by the neuropsych testing as well as work with Alex to express his feelings. We have a genetics appointment next week--our list of specialists continues to grow exponentially. Even so, I do feel like we have more answers right now than we have ever had.
Back to school--Alex is struggling in math. Even basic addition is a challenge. It is no secret that I loathe the math curriculum our school district is using. It was definitely not written with a special needs child in mind. The curriculum kits that I ordered should be delivered tomorrow, giving me several days to sort through it. I am particularly excited about the math program. Imagine teaching kids about money by showing them pictures that look like real money and not this crap they were using in the district!
=o)
I took him to the psychologist that the psychiatrist recommended yesterday, and I am hopeful that he can help us fill in some more blanks left by the neuropsych testing as well as work with Alex to express his feelings. We have a genetics appointment next week--our list of specialists continues to grow exponentially. Even so, I do feel like we have more answers right now than we have ever had.
Back to school--Alex is struggling in math. Even basic addition is a challenge. It is no secret that I loathe the math curriculum our school district is using. It was definitely not written with a special needs child in mind. The curriculum kits that I ordered should be delivered tomorrow, giving me several days to sort through it. I am particularly excited about the math program. Imagine teaching kids about money by showing them pictures that look like real money and not this crap they were using in the district!
Monday, February 04, 2008
Late November. Alex looked terrible. He was thin, pale, and lethargic, and he rarely smiled. Just not my "Sunshine Boy."
Early December. This picture was taken after Alex had several days of "rest" at home with no school. He was happy and playful--lots of energy! During this time we were debating about homeschooling again.
We started homeschooling again today. Alex has been in the a center-based special education program since January '07. Kindergarten was wonderful for him! He loved his teacher, and he loved school. (We started him on Ritalin, and he did okay, but the side effects got the best of him and we discontinued it over the summer.) Alex learned a lot and progressed beautifully in his Kindergarten program. He was happy and had a few good friends at school. We had a very pleasant summer and started him on Adderall XR just before school started again. Alex went back to the center-based special education program for 1st grade.
Things fell apart. On the first day of school, some one yelled at Alex to "STOP SHAKING THE TABLE!" Alex came home and quoted that phrase with inflection. We still don't know who said that. A few weeks later, Alex was bullied on the playground by two 3rd graders, and Alex hit one of them. I had a meeting about this because I felt strongly that 3rd graders should not be on the playground with the little ones at the same time, and I was upset that there was not enough supervision. Alex's teacher tried to keep the class separate as much as possible, but Alex continued to be afraid of recess at times. Alex got very sick and missed about a week of school. He never fully recovered, and October and November were terrible months. Jason and I are convinced Alex had something like Mono because he was weak and so tired, even when we took a break from the Adderall. He was so unhappy! Every morning he would wake up with a headache or a stomachache or both. He would get off the bus in the evenings completely expressionless. It frightened me! He lost weight and looked terrible. We went to frequent doctor's appointments, and nothing was "wrong" even though he never got well after the second bout of illness in October. We decided to pull him out of school in late November. He improved greatly in just a few days. We went to Disney World the last week of November, and we had our old, happy Alex back. When we got home, we spoke with the school and rather than pulling him out completely, they asked if we could try something. They started giving Alex frequent breaks. This seemed to help him, and he had a great December. In hindsight, Jason and I agree that the holidays and all the fun activities probably had more to do with this than anything else. In January, the cycle started up again.
Last Thursday night made our decision for us. Alex was having an increasingly difficult time sleeping, and again he was deeply unhappy and frustrated. (He was getting more frequent conduct notes at school as well.) I was laying down with him to try to get him to go to sleep, and he started pouring his little heart out to me. Here's the post I wrote on the e-board I frequent:
Alex has not been sleeping well. I'll lay down with him, and he will just start talking to me like I've never heard him talk before. Most of the time it is about his obsession du jour--a game or the dog or the attic. Sometimes it is about things that are stressing him like death (very difficult one), but we can talk and I can reassure him. He will get quiet after this and whisper, "I love you Mama." Last night's conversation started out with, "I don't want to play with mean kids." Then he asked me how to get the yuckies out of his heart. Turns out he thinks the bad things that other people do to him make him a bad person. He told me he wanted his heart to be pink again. He told me that he didn't follow directions at school and his teacher yelled at him. He told me, "Mrs. P is mean," and "they are ruining my life." (Where in the world did he hear that phrase "ruining my life"???) Then he told me, "When Mrs. P yells at me, I get very nervous and I cry. I don't want to go to school anymore." The last several days, Alex has gotten marks on his tally sheet for not following directions, but his teacher is not leaving notes anymore. I have written back and gotten no response. The last note she wrote was asking me if Alex had had his meds one day. He did have them, and I asked about what happened and got nothing. So, at 10pm last night after he told me all this, I called the team leader's VM and left a message. DH wants to wait until we get the new ADHD meds and assess the situation then, but I don't agree. I don't think new meds are going to fix a bad fit. Alex's teacher is certified in EI (emotionally impaired) and her approach does not fit Alex. I know she is a good teacher for the EI students, but not for Alex. He doesn't understand her or the things she expects him to do. So, he acts out. Yes, he should be following her direction, but most of the time these issues are about transitioning from one thing to another--a classically hard thing for children with autism. When he has a transitional issue, he gets yelled at. This feeds into his anxiety, and he comes home a shell of the kid he should be.I've posted about pulling him out. We are working towards that, and we have his OT in place, but I don't want to pull him until we have other supports ready to go. Namely speech therapy. But, from all this, it looks like we can't wait anymore. We are considering a change of schools--there is one other center in the city--but I wonder how such a huge change will affect him.
It was agonizing to make the decision, but on Friday, I met with his IEP team and pulled him out of school. They will reconvene the IEP when they get confirmation from the state that he is being homeschooled to set up continuing speech and OT.
We also changed meds on Friday to Focalin 2.5mg. It seems to be okay. It is not the long-acting version, but I was able to get through today's lesson without difficulty. I am okay with the small dose just to get him through schoolwork. Later we may have to up the dose, but for now, it is fine. He is still easily frustrated, but so much better than last week!
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