Friday, June 18, 2010
Some Resolution
I no longer have much access to my computer, since it's in my bedroom which is now my in-laws bedroom, so that's why I haven't posted in a long time. We have continued with Elise on Abilify. We changed to a liquid form of medication so that we could reduce the dose further. We also switched to giving it to her at night. This has helped the sleepiness some, although it's still a side effect for her. The constipation side effect seems to be improving also. On the big plus side, we have seen much better behavior from her in the last week. Her tantrums have decreased and she is attending to her therapy sessions better. Augh! Time to change a disgusting diaper. I'll see if I get an opportunity to complete this another time.
Saturday, June 5, 2010
Continuing the Fight
Just when things seemed like they were at their worst last Saturday, things became worse. Elise spent all day Sunday & Monday behaving like a wild animal. She would stand in front of me screaming and lifting her arms up to me asking to be picked up. When I would pick her up, she'd stiffen her body, and arch her back to escape my touch. I'd have to put her down and she'd then begin pulling her hair and screaming "Maaamaaaa!" in this tortured sounding voice. She would get so out of control that I'd have to shut her in her room since she could accept no comfort from me and was physically attacking me. When I'd hear the awful screaming slow, I'd re-enter her room and find her naked with scratch marks all over her body from clawing herself. It was beyond horrible and I hope that never experience meltdowns like that ever again from her.
On Sunday, we took the kids to the beach. The beach is not a good place for a child who is going sensory crazy - lesson learned the hard way. She was unreachable at the beach. She ran back and forth, spinning and jumping constantly. She seemed completely unaware of the people around her. When it was time to leave, she threw a major tantrum. I had to squeeze her between my legs in order to put on my beach coverup and pack a bag to carry back to the car. She broke free once and ran straight back to the water. I had to chase her down and start the process over. I grabbed the cooler bag and Elise's shoes and carried her as she struggled and screamed all the way back to the parking lot and the car. No one offered any help, but before I had a child like Elise, I wouldn't have either. Now, I'd recognize a meltdown and take the person's bag for them. Life experience changes you. I honestly don't blame anyone for not helping, it just made me realize this change in understanding I now have. By the time I got to the car, I was physically exhausted. I had to sit on the door opening for probably 5 minutes just to gather myself. Elise settled as soon as she got in the car, instantaneously. The meltdown was complete and utter sensory overload.
On Monday, we had planned to go to the zoo. We decided that Elise couldn't handle that, an excellent decision since even at home she spent the day in several major meltdowns like what I described above. Hubby took the boys while I stayed home with Elise. Again, it was just an awful day. We did manage to get out long enough to buy her some new shoes since her old shoes barely would go on her feet. During one of the day's last meltdowns at bedtime, I was just wondering how I would ever manage to make it through another 40 hours until her psychiatrist's appointment, my hope for help.
On Wednesday afternoon, we met with the doctor. Fortunately her behavior had improved dramatically on Tuesday and Wednesday. Elise's doctor is one of the kindest people I know. She's seemingly an unlikely candidate on the surface for this designation, but thankfully it's true. When we described what we had been experiencing, we expected a medical assessment. We got that, but first we received a heartfelt, "That must have been horrible for all of you." Such a simple statement, but it means so much. She thinks that it could have been the B12 that was causing the extreme behavior as some children cannot handle the B vitamins. However, she admitted that, while definitely possible, this would be an EXTREME reaction to B12, especially considering the small dose Elise was taking. However, she did think this was possible and that we should definitely not include B12 supplements for Elise again. She also said that some children react to the removal of gluten initially, but again, she felt that Elise's reaction would also have been extreme for this too. She agreed that we should wait longer to remove gluten and do so very slowly. She also told us, unprompted by anything we had said, that "This is not a regression, Elise will come back." I can't even begin to explain how much that statement met to me and how much that statement is helping me continue to push forward. She provided Abilify for Elise. We are to try it for 7 days, 1/4 tablet in the morning. The tablets are tiny, so cutting up the tablet into quarters is a challenge, but can be done.
Our inclination was to wait until Elise stabilized for a period of time before trying the Abilify. After talking about it, we decided that we should try it this weekend because, if she had a bad reaction to it, our babysitter would be better equipped to identify it and handle her than her abuelos will be. We didn't want to experiment when we didn't have either hubby, myself or the sitter to handle Elise and observe her. She took her first pill Friday morning. We didn't notice much affect at all, although she had a good day. When I arrived home, the sitter told me that Elise was tired. In fact, Elise was so tired that she fell asleep in my arms by 7:15. She didn't awaken until after 8 this morning. A lot of sleep, but no alarm bells yet. I again gave her a dose this morning. She had therapy sessions from 11-2 & from 2-4. We planned to take her to an indoor playground for the latter half of the first session. She played there but was very lathargic and spacey. Earlier when her therapist brought her out for lunch, she mentioned that Elise seemed unusually tired. I thought it might be allergies since I'd heard her sniffle and we're all experiencing allergy issues right now. I gave her some Claritin and we left for the playground. When we returned home, I was shocked to see that Elise had dozed off in her carseat (it's a 3 minute drive). I brought her inside and she began her second session. This therapist noticed that Elise was very tired and spacey also, unusually so. Around 3, she came to find me and asked if I would sit and watch Elise work because she was concerned about her. Elise sat at her work table. When asked to perform a task, she acted very out of touch, leaned her head backward and nodded off to sleep. I put her to bed and she was out in less than a minute. Needless to say, her session ended there. I paged the doctor. While waiting for her return call, I began reading about side effects and found that sleepiness can be one. The doctor asked that we give her the medicine tomorrow night instead of the morning and call her on Monday to let her know how Elise was doing. I'm ready to give up this trial, but I want to give it a fair chance. I don't think this is going to work for her. I don't want a zombie, but I don't want a child raging uncontrollably either. I imagine that we'll end up pulling this medication. Hubby and I would like to remove almost everything and see what the real Elise is now like. We can then slowly start again. I hate "experimenting" on her little body, but as autism is so greatly varied, there is no other way to determine what will help your child. Obviously, Elise has an incredibly sensitive system. My poor angel baby.
Oh, I forgot to mention the moment of extreme panic I felt when I realized I had given her Claritin and didn't even think to verify that there is no drug interaction with the Abilify. I ran to the computer and fortunately, there is not. However, it was a terrifying moment to think that she could be harmed by my carelessness.
Another side effect of Abilify is constipation. Elise hasn't had a bowel movement since Wednesday. That's the worst she's ever been. You know, I'm starting to talk myself in to ending the Abilify experiment.
We also visited the chiropractor again today. Her adjustment is holding. She is no longer cooperative with the chiropractor, so I don't know how useful it'll be to continue the appointments. We cut a large chunk of hair (over 2 inches) from the underneath part of her hair to send into a lab that analyzes the hair. It's not a particularly accurate test, but it does help to point one in the direction of possible problems. I think it's possible that Elise has been exposed to too much mercury. I had a mouthful, literally, of silver amalgams when I was pregnant with the twins. Concurrently, I moved into our house when I was 17 weeks and began enjoying the lime/lemon tree in our backyard. Apparently lemon & limes can seep the mercury from the amalgams through my body. On top of this, I had frequent teeth cleanings while I was pregnant to help the risk of pre-term labor, as infection is the leading cause of that and many infections come from bacteria in the mouth. Cleanings also leach the mercury from the amalgams. In addition, I have had 4 or 5 MMR shots. My titter for this must be very high and this can also possibly be linked to increased chance of autism. In addition, at the time frame I had my last 2 or 3 (can't remember how many) MMR shots, thimersol would have been a component. Elise also received a flu vaccine when she was a bit over one and that still contains a small amount of mercury. With all of this little things, I want to verify that Elise's mercury levels are not elevated. It's just for information at this time. I'm skeptical of this as it's not scientifically proven and chelating can be very hard on a body. I don't know if that's a line I would ever cross with Elise. There would have to be a very strong case made for doing so and I'd only look into the mildest forms of it. That would be long ahead in the future. In the meantime, I need to get Elise a haircut to even her hair. I wanted to cut it shoulder length for the hot summer anyway.
I just want to thank all my friends and family who read this and have offered their support and kind words. It is so important to me and it means a lot.
On Sunday, we took the kids to the beach. The beach is not a good place for a child who is going sensory crazy - lesson learned the hard way. She was unreachable at the beach. She ran back and forth, spinning and jumping constantly. She seemed completely unaware of the people around her. When it was time to leave, she threw a major tantrum. I had to squeeze her between my legs in order to put on my beach coverup and pack a bag to carry back to the car. She broke free once and ran straight back to the water. I had to chase her down and start the process over. I grabbed the cooler bag and Elise's shoes and carried her as she struggled and screamed all the way back to the parking lot and the car. No one offered any help, but before I had a child like Elise, I wouldn't have either. Now, I'd recognize a meltdown and take the person's bag for them. Life experience changes you. I honestly don't blame anyone for not helping, it just made me realize this change in understanding I now have. By the time I got to the car, I was physically exhausted. I had to sit on the door opening for probably 5 minutes just to gather myself. Elise settled as soon as she got in the car, instantaneously. The meltdown was complete and utter sensory overload.
On Monday, we had planned to go to the zoo. We decided that Elise couldn't handle that, an excellent decision since even at home she spent the day in several major meltdowns like what I described above. Hubby took the boys while I stayed home with Elise. Again, it was just an awful day. We did manage to get out long enough to buy her some new shoes since her old shoes barely would go on her feet. During one of the day's last meltdowns at bedtime, I was just wondering how I would ever manage to make it through another 40 hours until her psychiatrist's appointment, my hope for help.
On Wednesday afternoon, we met with the doctor. Fortunately her behavior had improved dramatically on Tuesday and Wednesday. Elise's doctor is one of the kindest people I know. She's seemingly an unlikely candidate on the surface for this designation, but thankfully it's true. When we described what we had been experiencing, we expected a medical assessment. We got that, but first we received a heartfelt, "That must have been horrible for all of you." Such a simple statement, but it means so much. She thinks that it could have been the B12 that was causing the extreme behavior as some children cannot handle the B vitamins. However, she admitted that, while definitely possible, this would be an EXTREME reaction to B12, especially considering the small dose Elise was taking. However, she did think this was possible and that we should definitely not include B12 supplements for Elise again. She also said that some children react to the removal of gluten initially, but again, she felt that Elise's reaction would also have been extreme for this too. She agreed that we should wait longer to remove gluten and do so very slowly. She also told us, unprompted by anything we had said, that "This is not a regression, Elise will come back." I can't even begin to explain how much that statement met to me and how much that statement is helping me continue to push forward. She provided Abilify for Elise. We are to try it for 7 days, 1/4 tablet in the morning. The tablets are tiny, so cutting up the tablet into quarters is a challenge, but can be done.
Our inclination was to wait until Elise stabilized for a period of time before trying the Abilify. After talking about it, we decided that we should try it this weekend because, if she had a bad reaction to it, our babysitter would be better equipped to identify it and handle her than her abuelos will be. We didn't want to experiment when we didn't have either hubby, myself or the sitter to handle Elise and observe her. She took her first pill Friday morning. We didn't notice much affect at all, although she had a good day. When I arrived home, the sitter told me that Elise was tired. In fact, Elise was so tired that she fell asleep in my arms by 7:15. She didn't awaken until after 8 this morning. A lot of sleep, but no alarm bells yet. I again gave her a dose this morning. She had therapy sessions from 11-2 & from 2-4. We planned to take her to an indoor playground for the latter half of the first session. She played there but was very lathargic and spacey. Earlier when her therapist brought her out for lunch, she mentioned that Elise seemed unusually tired. I thought it might be allergies since I'd heard her sniffle and we're all experiencing allergy issues right now. I gave her some Claritin and we left for the playground. When we returned home, I was shocked to see that Elise had dozed off in her carseat (it's a 3 minute drive). I brought her inside and she began her second session. This therapist noticed that Elise was very tired and spacey also, unusually so. Around 3, she came to find me and asked if I would sit and watch Elise work because she was concerned about her. Elise sat at her work table. When asked to perform a task, she acted very out of touch, leaned her head backward and nodded off to sleep. I put her to bed and she was out in less than a minute. Needless to say, her session ended there. I paged the doctor. While waiting for her return call, I began reading about side effects and found that sleepiness can be one. The doctor asked that we give her the medicine tomorrow night instead of the morning and call her on Monday to let her know how Elise was doing. I'm ready to give up this trial, but I want to give it a fair chance. I don't think this is going to work for her. I don't want a zombie, but I don't want a child raging uncontrollably either. I imagine that we'll end up pulling this medication. Hubby and I would like to remove almost everything and see what the real Elise is now like. We can then slowly start again. I hate "experimenting" on her little body, but as autism is so greatly varied, there is no other way to determine what will help your child. Obviously, Elise has an incredibly sensitive system. My poor angel baby.
Oh, I forgot to mention the moment of extreme panic I felt when I realized I had given her Claritin and didn't even think to verify that there is no drug interaction with the Abilify. I ran to the computer and fortunately, there is not. However, it was a terrifying moment to think that she could be harmed by my carelessness.
Another side effect of Abilify is constipation. Elise hasn't had a bowel movement since Wednesday. That's the worst she's ever been. You know, I'm starting to talk myself in to ending the Abilify experiment.
We also visited the chiropractor again today. Her adjustment is holding. She is no longer cooperative with the chiropractor, so I don't know how useful it'll be to continue the appointments. We cut a large chunk of hair (over 2 inches) from the underneath part of her hair to send into a lab that analyzes the hair. It's not a particularly accurate test, but it does help to point one in the direction of possible problems. I think it's possible that Elise has been exposed to too much mercury. I had a mouthful, literally, of silver amalgams when I was pregnant with the twins. Concurrently, I moved into our house when I was 17 weeks and began enjoying the lime/lemon tree in our backyard. Apparently lemon & limes can seep the mercury from the amalgams through my body. On top of this, I had frequent teeth cleanings while I was pregnant to help the risk of pre-term labor, as infection is the leading cause of that and many infections come from bacteria in the mouth. Cleanings also leach the mercury from the amalgams. In addition, I have had 4 or 5 MMR shots. My titter for this must be very high and this can also possibly be linked to increased chance of autism. In addition, at the time frame I had my last 2 or 3 (can't remember how many) MMR shots, thimersol would have been a component. Elise also received a flu vaccine when she was a bit over one and that still contains a small amount of mercury. With all of this little things, I want to verify that Elise's mercury levels are not elevated. It's just for information at this time. I'm skeptical of this as it's not scientifically proven and chelating can be very hard on a body. I don't know if that's a line I would ever cross with Elise. There would have to be a very strong case made for doing so and I'd only look into the mildest forms of it. That would be long ahead in the future. In the meantime, I need to get Elise a haircut to even her hair. I wanted to cut it shoulder length for the hot summer anyway.
I just want to thank all my friends and family who read this and have offered their support and kind words. It is so important to me and it means a lot.
Saturday, May 29, 2010
Fooling Myself
So, I just had a surprising moment of realizing that I've been fooling myself all along.
Today, I scheduled a class for Elise to take at a local My Gym. I placed her with 2 1/2 to 3 1/2 year olds because I knew developmentally she wouldn't be able to handle the 3 1/2 to 4 1/2 year old class. It was horrendous. The plan was for her aide to accompany her. Surprise, her aide shows up at the house and it's not the one who was scheduled, who Elise has been working with the last month. It's somebody we've never met before, which is always hard for Elise. I went forward with the class because it was already pre-scheduled. My plan was to watch it since Elise is so much more babyish with me. However, since it was someone new, I helped out instead. Disaster! Elise seems so far gone, even in comparison to those younger children. I can't stand it anymore. I don't even have anymore ideas about what could help her. Right now, I just want to give up.
When I returned home, I sat down on the couch with my husband and mentioned that "I just don't know what's wrong with her lately." His response was "Well, she's autistic, that's what's wrong with her." I've since locked myself in the bedroom because I just don't want to be around anyone right now. It was such an upsetting class and it was the absolute last thing that I wanted to hear when I was hoping for support.
I just give up. Eveything I've been trying to do lately to help her seems to be backfiring. There's no sense in continuing this fight. She's autistic and she's getting worse every day. Maybe others will be able to figure out how to manage her because I'm flat out tired and out of ideas and just unsuccessful. I don't even feel like fighting in mediation for her to be with typical kids. They're probably right, she can't handle it. She probably belongs in the autism warehouse school where they can hopefully manage her tantrums and teach her to talk someday.
For now, I'm just done. I'm tired, I feel hopeless and I'm done.
Today, I scheduled a class for Elise to take at a local My Gym. I placed her with 2 1/2 to 3 1/2 year olds because I knew developmentally she wouldn't be able to handle the 3 1/2 to 4 1/2 year old class. It was horrendous. The plan was for her aide to accompany her. Surprise, her aide shows up at the house and it's not the one who was scheduled, who Elise has been working with the last month. It's somebody we've never met before, which is always hard for Elise. I went forward with the class because it was already pre-scheduled. My plan was to watch it since Elise is so much more babyish with me. However, since it was someone new, I helped out instead. Disaster! Elise seems so far gone, even in comparison to those younger children. I can't stand it anymore. I don't even have anymore ideas about what could help her. Right now, I just want to give up.
When I returned home, I sat down on the couch with my husband and mentioned that "I just don't know what's wrong with her lately." His response was "Well, she's autistic, that's what's wrong with her." I've since locked myself in the bedroom because I just don't want to be around anyone right now. It was such an upsetting class and it was the absolute last thing that I wanted to hear when I was hoping for support.
I just give up. Eveything I've been trying to do lately to help her seems to be backfiring. There's no sense in continuing this fight. She's autistic and she's getting worse every day. Maybe others will be able to figure out how to manage her because I'm flat out tired and out of ideas and just unsuccessful. I don't even feel like fighting in mediation for her to be with typical kids. They're probably right, she can't handle it. She probably belongs in the autism warehouse school where they can hopefully manage her tantrums and teach her to talk someday.
For now, I'm just done. I'm tired, I feel hopeless and I'm done.
Thursday, May 27, 2010
Turmoil
We have had quite a time with Elise lately. She seriously was beginning to seem as if she was diving off the deep end. She was waking during the night with violent tantrums that could go on for hours. She was spending entire ABA sessions screaming. She was displaying lots of irrational seeming fears, such as becoming terrified whenever she'd see something outside the front window. She began placing strange demands like her blinds had to remain open at night, she didn't want the video monitor in her room (she threw that across the room in one of her fits), I had to be standing up, not sitting. It was bizarre and incredibly difficult. She seemed to be in so much turmoil that I felt like she was in a living hell. She smiled rarely, if ever, had dark circles under her eyes, tuned us out and liked to lie down in the fetal position. She also was chewing her hair a lot. Fortunately, we have had a really good day today and I'm hopeful that we are past the worst. Here's my theories on this awful behavior phase:
- We just this week removed gluten from Elise's diet. She may have been experiencing some withdrawal symptoms since the theory is that gluten & casein has an opiate effect on some autistic children. She was no longer receiving her "fix".
- Elise has been using B12 for the past 5 weeks. We had given her some higher doses. Some children become very stimmy and hyper on B12. Elise was stimming more and was very irritable. Her doctor thinks it may have just built up in her system over time.
- Often when Elise was waking in these rages, we noticed that she would start to calm, sniffle & then become enraged again. Then, yesterday evening, we noticed that she was fussing with her ear. We also remembered how her brother A used to wake in rages before we started giving him allergy medication (he no longer needs to take it).
- Elise spends a LOT of time in her bedroom for therapy. She's always loved getting out of the house for adventures. She may be getting stir crazy being so confined.
OK, given the above theories, here is what we have done (corresponds by number):
- We have continued the diet because if the above is true then that means diet is a big factor for her and we need to push through this withdrawal.
- We have discontinued the B12 after speaking with the doctor who recommended it.
- We started giving her Claritin in case she is having problems with allergies or a cold.
- We spoke with her parent trainer about making sure that Elise gets out during her sessions to play outside or go for a walk at the very least.
We have one day of success with these interventions. We will see how things proceed from here. I can hardly declare victory after one successful day, but I'm hopeful. Elise played red light green light with her brother B tonight. She was stopping and running appropriately with little intervention from me and was really happy. It was good to see her happy again. I hope that the hell in which she's obviously been living lately is beginning to see the light of better things to come.
Saturday, May 22, 2010
Same Sh** Different Day
Contrary to this title, I'm actually not as frustrated as it sounds. It's just the truth. I don't post as often because everyday is just more of the same. We're seeing steady progress, but no huge breakthrough. I'm happy that there is steady progress, but it sure would be great to fulfill the fantasy I have of waking up one day to having Elise no longer be autistic. The happiest dream I can even imagine is to have her come running into my room some morning, calling out my name and give me a big hug - all without prompting. I'm crying now thinking about that dream.
Elise had a fantastic week the week before this past week. We went casein free two weeks ago. Initially, it seemed that she may be benefitting from it. She was very alert, interactive & making significant speech progress. Her poops were also normalizing. We visited friends in San Diego on the weekend. We stayed in a hotel and did all kinds of things completely out of Elise's routine. She adapted beautifully. I have to admit that I was surprised at how well she did. Starting on Monday last week, things took a sharp turn in the wrong direction. Elise began stimming a lot. She started to seem very sensory sensitive again. A lot of the sensory issues she used to have seemed to return full force. She is back to squinting her eyes & pushing on them. She is bumping into all kinds of things. She's scared of sudden noises, like cars starting, again.
Worst of all, she started waking again at night. She woke on Monday night and was in the middle of a tantrum rage. I took her out of her room so that everyone else could continue to sleep. She began slapping my face, hard. She was completely out of control. I ignored her and she settled within a couple of hours. On Wednesday night, she awoke around midnight, again in a rage. We again took her to the playroom. She was completely out of control. I didn't provide her the opportunity to hit me again, but she was slapping her hands together very hard, threw over her play kitchen, almost overturned a very heavy train table and was thrashing & kicking wildly. Hubby came out to help me. We wrapped her in a big blanket super tight to restrict her movement so that she wouldn't hurt herself or anyone else. That enraged her further. B woke up and called for Daddy, so hubby went to be with him. I didn't want the boys to see Elise like that, so I put her in the car at 1:30 in the morning and went for a drive. We were gone for about 30 minutes. She was quiet as soon as we backed out of the driveway. When we returned, she began screaming as soon as we turned onto our home street. However, she was not in such a rage this time. We watched tv for a bit. Eventually, Elise got up and went to her favorite corner. She was whining a lot, but I ignored her and fell asleep on the couch. When I woke up, I realized that she was still standing in her corner, but was quiet. I called to her and asked her to come give me a hug. She came over to me, but when I tried to hug her, she began to cry again. She said "Up!", so I sat up. I tried to hug her again and she pulled away from me whining. I asked if she wanted to go to bed. She said "Bed" and held my hand as I took her to her room. She laid down in bed and fell asleep. It was 4am by this point. When she was so out of control, I became so scared. She's already strong. If we don't get this under control, we will not be able to handle her someday. Hubby realized this too. When we were wrapping her in the blanket, he looked at me and said "What are supposed to do?" It was exactly the way I was feeling and met more than what are we supposed to do in this particular moment. It was a horrible night.
She has slept well the last few nights. Let's hope that the worst is again over and this time will stay over forever. One thing to note is that on both Monday & Wednesday nights, she developed a stuffy nose during the night. When she sniffled, is when she would become further enraged.
We are very nearly gluten free now also. This week, I made GFCF chocolate chip cookies, bread & blueberry muffins. All turned out well. The bread was tasty, but was oddly shaped and HUGE. I definitely need to work on baking the bread. I may need to buy a breadmaker to get it right. However, it was a first try. I've only baked quick breads in the past, never a yeast bread. No longer eating out is difficult as is the lack of eating pizza. We didn't have pizza that often, but knowing that we can't have it is strangely difficult.
The babysitter is going on a leave for 3-6 weeks soon. Elise's therapist is working on putting together a social story with pictures to help explain to Elise that the sitter will be leaving for awhile but will return. I think that'll help Elise understand a lot. The grandparents are coming to help us care for the kids for 4 weeks. Otherwise, we wouldn't be able to keep working. It's not like a can just send Elise to a daycare setting or hire just anyone to watch her. She needs someone who cares about her, is patient & will work with her instead of just enjoying the fact that she will do her own thing and not ask for a lot of, or any, care.
I've called Elise's old chiropractor. I'm hoping to schedule a time to have her adjusted again. He used to be extremely helpful with her sensory problems in the past. I'm also going to get the name of a good homeopath from him. I trust him very much. He is extremely passionate about his work, but reasonable about where traditional western medicine is needed. He'll be good in helping us reach the balance between all the helpful options for Elise.
Elise's speech teacher began using a flute to work with Elise. Elise blows on the flute a prescribed number of times and then we ask her to speak. The words are often much clearer and stronger. It can sometimes be pretty amazing. Other times, I don't notice much difference. When it works, it's pretty remarkable to hear her speak so well. That little girl works so hard. Tonight, I was on the phone with my parents. She pointed at the phone. Hubby asked if she wanted to talk. She said "Talk" as she nodded her head. I gave her the phone and prompted her to say things. She said, Hi, mama, dada, Adam, apple & bye-bye. Her grandparents were very supportive of her and she looked really proud of herself.
One thing that has really been bothering me since Thursday is that her parent trainer is now going to begin to work with her on more oral motor skills. They will be working on teaching her to smile. I can't even explain how much it bothers me to hear that something as basic and essential as smiling needs to be taught to Elise. I hadn't noticed it before, but Elise no longer gives big smiles. Now, I'm crying again thinking of this. I'm starting to feel desperate about her again.
Elise had a fantastic week the week before this past week. We went casein free two weeks ago. Initially, it seemed that she may be benefitting from it. She was very alert, interactive & making significant speech progress. Her poops were also normalizing. We visited friends in San Diego on the weekend. We stayed in a hotel and did all kinds of things completely out of Elise's routine. She adapted beautifully. I have to admit that I was surprised at how well she did. Starting on Monday last week, things took a sharp turn in the wrong direction. Elise began stimming a lot. She started to seem very sensory sensitive again. A lot of the sensory issues she used to have seemed to return full force. She is back to squinting her eyes & pushing on them. She is bumping into all kinds of things. She's scared of sudden noises, like cars starting, again.
Worst of all, she started waking again at night. She woke on Monday night and was in the middle of a tantrum rage. I took her out of her room so that everyone else could continue to sleep. She began slapping my face, hard. She was completely out of control. I ignored her and she settled within a couple of hours. On Wednesday night, she awoke around midnight, again in a rage. We again took her to the playroom. She was completely out of control. I didn't provide her the opportunity to hit me again, but she was slapping her hands together very hard, threw over her play kitchen, almost overturned a very heavy train table and was thrashing & kicking wildly. Hubby came out to help me. We wrapped her in a big blanket super tight to restrict her movement so that she wouldn't hurt herself or anyone else. That enraged her further. B woke up and called for Daddy, so hubby went to be with him. I didn't want the boys to see Elise like that, so I put her in the car at 1:30 in the morning and went for a drive. We were gone for about 30 minutes. She was quiet as soon as we backed out of the driveway. When we returned, she began screaming as soon as we turned onto our home street. However, she was not in such a rage this time. We watched tv for a bit. Eventually, Elise got up and went to her favorite corner. She was whining a lot, but I ignored her and fell asleep on the couch. When I woke up, I realized that she was still standing in her corner, but was quiet. I called to her and asked her to come give me a hug. She came over to me, but when I tried to hug her, she began to cry again. She said "Up!", so I sat up. I tried to hug her again and she pulled away from me whining. I asked if she wanted to go to bed. She said "Bed" and held my hand as I took her to her room. She laid down in bed and fell asleep. It was 4am by this point. When she was so out of control, I became so scared. She's already strong. If we don't get this under control, we will not be able to handle her someday. Hubby realized this too. When we were wrapping her in the blanket, he looked at me and said "What are supposed to do?" It was exactly the way I was feeling and met more than what are we supposed to do in this particular moment. It was a horrible night.
She has slept well the last few nights. Let's hope that the worst is again over and this time will stay over forever. One thing to note is that on both Monday & Wednesday nights, she developed a stuffy nose during the night. When she sniffled, is when she would become further enraged.
We are very nearly gluten free now also. This week, I made GFCF chocolate chip cookies, bread & blueberry muffins. All turned out well. The bread was tasty, but was oddly shaped and HUGE. I definitely need to work on baking the bread. I may need to buy a breadmaker to get it right. However, it was a first try. I've only baked quick breads in the past, never a yeast bread. No longer eating out is difficult as is the lack of eating pizza. We didn't have pizza that often, but knowing that we can't have it is strangely difficult.
The babysitter is going on a leave for 3-6 weeks soon. Elise's therapist is working on putting together a social story with pictures to help explain to Elise that the sitter will be leaving for awhile but will return. I think that'll help Elise understand a lot. The grandparents are coming to help us care for the kids for 4 weeks. Otherwise, we wouldn't be able to keep working. It's not like a can just send Elise to a daycare setting or hire just anyone to watch her. She needs someone who cares about her, is patient & will work with her instead of just enjoying the fact that she will do her own thing and not ask for a lot of, or any, care.
I've called Elise's old chiropractor. I'm hoping to schedule a time to have her adjusted again. He used to be extremely helpful with her sensory problems in the past. I'm also going to get the name of a good homeopath from him. I trust him very much. He is extremely passionate about his work, but reasonable about where traditional western medicine is needed. He'll be good in helping us reach the balance between all the helpful options for Elise.
Elise's speech teacher began using a flute to work with Elise. Elise blows on the flute a prescribed number of times and then we ask her to speak. The words are often much clearer and stronger. It can sometimes be pretty amazing. Other times, I don't notice much difference. When it works, it's pretty remarkable to hear her speak so well. That little girl works so hard. Tonight, I was on the phone with my parents. She pointed at the phone. Hubby asked if she wanted to talk. She said "Talk" as she nodded her head. I gave her the phone and prompted her to say things. She said, Hi, mama, dada, Adam, apple & bye-bye. Her grandparents were very supportive of her and she looked really proud of herself.
One thing that has really been bothering me since Thursday is that her parent trainer is now going to begin to work with her on more oral motor skills. They will be working on teaching her to smile. I can't even explain how much it bothers me to hear that something as basic and essential as smiling needs to be taught to Elise. I hadn't noticed it before, but Elise no longer gives big smiles. Now, I'm crying again thinking of this. I'm starting to feel desperate about her again.
Friday, May 7, 2010
And Here We Are
There really is never a dull moment since the kids entered our lives. The past two weeks have continued to be eventful. I believe my last post was a one liner. That was the day that I was stuck alone in an elevator for an hour when I was leaving work to go home for the day. It was actually a terrifying experience to be pulled from the 6th floor to the 17th when I was trying to go down. It went at a faster pace than normal and sort of settled hard on each floor from 10 to 17. When it finally stopped, it seemed to still have a sort of motion. I really only noticed it when I was sitting on the floor, but it was scary. I spent my time waiting to be rescued by reading the school district's full assessment of Elise. I later found out that the elevator did exactly what it's supposed to do when it fails and that I was at no risk of falling. Would have been nice to know that while I was trapped! I spent the rest of the evening and the next day feeling sad and guilty because in the moments when the elevator seemed so out of control, I thought most of Elise. I thought of the boys and Carlos, but the thought that most pained me and my biggest fear was what would happen to Elise if something happened to me. I guess it's a compliment to the others that I know they are strong enough to make it through life without me. I fear that Elise would become lost again if I don't keep her anchored in our world.
We spoke with the lawyer last weekend and we signed Elise's IEP in disagreement with the placement recommendation. The lawyer will be filing our due process paperwork hopefully this coming Monday or Tuesday. She had a couple of cases to file before us, but she said she would get us a draft of the paperwork for our review late Sunday night. She also told us that she thinks we should be reimbursed for the private speech therapy we have acquired for Elise since the school district did not provide us any other option. She seemed confident that this would not be a problem. Since we've already dropped a bundle on her therapy and the costs are continuing to mount, we are happy with this potential outcome.
In addition to the great elevator escapade of Thursday the 29th, that was also the day that I found out Elise is apraxic. I accompanied Elise to her speech therapy session because her ABA supervisor was attending the session to learn what Elise is doing there. It became obvious to me at that session that Elise cannot handle a full hour of speech. She received 80-90% of the benefit in the first 1/2 hour. We have decided that it is much more beneficial to her to have 1/2 hour sessions. The therapist had told me this before, but logistically it's so hard to get Elise back and forth to speech, that I resisted changing to shorter sessions. Thursday convinced me and she now does only 1/2 hour sessions. It's definitely more bang for our buck even if it is a logistical nightmare. The ABA supervisor seemed surprised at all that Elise could say. I find this irritating since I've told her this many times. It proves that she disregards much of what I say - augh! Anyway, she made the offhand comment that Elise could be lazy about talking sometimes. The therapist cut her off and told her that she would never use the word lazy to describe Elise and speech. She explained that Elise has apraxia and that spending 1/2 hour in speech is like us working out for 1/2 hour on the stairmaster at the gym. It's really hard work for her and it's exhausting.
Over the weekend, B was sick. We all were very tired and we really just spent the weekend relaxing at home. On Monday night, I became really sick with some stomach virus. I went to work on Tuesday, but I only went because there is no way to rest at home with the kids. I was still without an appetite and very tired. On Tuesday at school, A threw up and hubby had to take him home. He stayed home sick on Wednesday, but recovered and returned to school on Thursday. Elise and hubby seem to have escaped this virus. Elise has never had a day of diarrhea in her whole life. This would normally be a good thing, but my intuition tells me that this is actually a link to an underlying medical issue for her autistic behaviors. If only I knew what the link was and how to fix it. She actually has been having big constipation issues the last two weeks. We've had to return to giving her Miralax because she was getting so uncomfortable. Finally tonight she seems to be improving and her belly is less distended.
Last night, we had our weekly meeting with the ABA supervisor. It was beyond horrible. Elise threw a tantrum when her nanny went home. We're supposed to put her time out when this happens. I did this, all the while being "observed", pardon me "judged", by the ABA supervisor. Elise did not settle, although she usually does pretty well when we put her time out. She's quite adept at reading that this was a different situation with the ABA supervisor there. When Elise cries, B gets very upset. He also began tantruming and hubby and I had to put him timeout. It was awful. The more he cried, the more Elise cried and vice versa. It became a vicious cycle and I felt that I couldn't take control of it the way I wanted to because it wasn't the way I was being "taught" to handle things. I attempted to continue the meeting and mentioned that I felt Elise's cry was no longer a tantrum, but was a scared cry. Whenever I checked on her, her eyes were pleading and terrified. She was standing in the corner with her little hands up to her mouth chewing on her knuckles. It was horrifying to leave her like that. The first 30 minutes were a tantrum and I have no problem following the protocol for that. However, I knew when the cry switched and I didn't stand up to the supervisor. I feel horrible for that. The supervisor asked how I knew Elise was scared and I told her because I know the differences in her cries. She looked at me like that was strange. Mothers know the difference, period.
On top of that, I was explaining that Elise would keep this up until she fell asleep for the night. This didn't phase the supervisor, but it pissed me off since our cousin was coming for a visit. We hadn't seen him in a year and since he lives 2000 miles away, we weren't going to see him again for quite awhile. I explained that Elise needed to see her uncle and that staying all night in time out was not an option that day. No solution offered of course. I seriously felt ready to lose it. I had to leave the room and let hubby conclude the meeting. As soon as she left, Carlos opened the door for Elise. She was still crying, but settled within a minute. Then, she clung very tight to me for 10 minutes. She would occassionally cry again and I discovered that she was having stomach pains. That was why her cry had changed. I felt like the worst mother in the world for not being there for her when she was in pain and needed my comfort. I feel very guilty for ignoring my instinct and listening to someone who is just passing through our lives.
Today I left work early to attend a mother's day party at the boys preschool. Each class sung a song and we had drinks and snacks. It was really nice. A decorated a flower pot and made flowers to put in it. B made a beaded bracelet for me. The school was crowded, so I parked far away. When I was walking from the car, I ran into another mother who has two boys almost the same age as my boys. Her youngest has been in therapy like Elise and there has been talk from her that he is on the spectrum. I know that I mentioned her in a post because I would get angry that she seemed to so obviously differentiate how her son was not as bad as Elise. Well, now I feel bad that I felt angry. She was doing that because she was in denial about her own son's autism. I can relate to that stage very well. Today she told me that he received a diagnosis yesterday from the school district. I told her that I was sorry to hear that because I know how hard it is to actually hear the diagnosis made, even if you suspected it. She seemed close to tears a few times. She is supposed to move out of the country this fall for her husband's work. Now, their lives will likely be turned upside down because she thinks she may need to stay here to get him the help he needs. She also has little family in the area, although she is very outgoing person and has lots of friends. I'm so reserved, but I finally just gave her a big hug and told her that there is so much reason to hope. I didn't say much more because I don't want to push information on her if she's not ready or doesn't want it. I offered that I could give her names of doctors we've used if she wants the diagnosis confirmed. As angry and hurt as I've felt with her in the past, there is zero satisfaction that this has sticken her family also. It's just awful, there's no other way to describe it. I feel very bad for them and the journey that they may just be starting.
That's been the synopsis of the last couple of weeks. And here we are - where will we be next?
We spoke with the lawyer last weekend and we signed Elise's IEP in disagreement with the placement recommendation. The lawyer will be filing our due process paperwork hopefully this coming Monday or Tuesday. She had a couple of cases to file before us, but she said she would get us a draft of the paperwork for our review late Sunday night. She also told us that she thinks we should be reimbursed for the private speech therapy we have acquired for Elise since the school district did not provide us any other option. She seemed confident that this would not be a problem. Since we've already dropped a bundle on her therapy and the costs are continuing to mount, we are happy with this potential outcome.
In addition to the great elevator escapade of Thursday the 29th, that was also the day that I found out Elise is apraxic. I accompanied Elise to her speech therapy session because her ABA supervisor was attending the session to learn what Elise is doing there. It became obvious to me at that session that Elise cannot handle a full hour of speech. She received 80-90% of the benefit in the first 1/2 hour. We have decided that it is much more beneficial to her to have 1/2 hour sessions. The therapist had told me this before, but logistically it's so hard to get Elise back and forth to speech, that I resisted changing to shorter sessions. Thursday convinced me and she now does only 1/2 hour sessions. It's definitely more bang for our buck even if it is a logistical nightmare. The ABA supervisor seemed surprised at all that Elise could say. I find this irritating since I've told her this many times. It proves that she disregards much of what I say - augh! Anyway, she made the offhand comment that Elise could be lazy about talking sometimes. The therapist cut her off and told her that she would never use the word lazy to describe Elise and speech. She explained that Elise has apraxia and that spending 1/2 hour in speech is like us working out for 1/2 hour on the stairmaster at the gym. It's really hard work for her and it's exhausting.
Over the weekend, B was sick. We all were very tired and we really just spent the weekend relaxing at home. On Monday night, I became really sick with some stomach virus. I went to work on Tuesday, but I only went because there is no way to rest at home with the kids. I was still without an appetite and very tired. On Tuesday at school, A threw up and hubby had to take him home. He stayed home sick on Wednesday, but recovered and returned to school on Thursday. Elise and hubby seem to have escaped this virus. Elise has never had a day of diarrhea in her whole life. This would normally be a good thing, but my intuition tells me that this is actually a link to an underlying medical issue for her autistic behaviors. If only I knew what the link was and how to fix it. She actually has been having big constipation issues the last two weeks. We've had to return to giving her Miralax because she was getting so uncomfortable. Finally tonight she seems to be improving and her belly is less distended.
Last night, we had our weekly meeting with the ABA supervisor. It was beyond horrible. Elise threw a tantrum when her nanny went home. We're supposed to put her time out when this happens. I did this, all the while being "observed", pardon me "judged", by the ABA supervisor. Elise did not settle, although she usually does pretty well when we put her time out. She's quite adept at reading that this was a different situation with the ABA supervisor there. When Elise cries, B gets very upset. He also began tantruming and hubby and I had to put him timeout. It was awful. The more he cried, the more Elise cried and vice versa. It became a vicious cycle and I felt that I couldn't take control of it the way I wanted to because it wasn't the way I was being "taught" to handle things. I attempted to continue the meeting and mentioned that I felt Elise's cry was no longer a tantrum, but was a scared cry. Whenever I checked on her, her eyes were pleading and terrified. She was standing in the corner with her little hands up to her mouth chewing on her knuckles. It was horrifying to leave her like that. The first 30 minutes were a tantrum and I have no problem following the protocol for that. However, I knew when the cry switched and I didn't stand up to the supervisor. I feel horrible for that. The supervisor asked how I knew Elise was scared and I told her because I know the differences in her cries. She looked at me like that was strange. Mothers know the difference, period.
On top of that, I was explaining that Elise would keep this up until she fell asleep for the night. This didn't phase the supervisor, but it pissed me off since our cousin was coming for a visit. We hadn't seen him in a year and since he lives 2000 miles away, we weren't going to see him again for quite awhile. I explained that Elise needed to see her uncle and that staying all night in time out was not an option that day. No solution offered of course. I seriously felt ready to lose it. I had to leave the room and let hubby conclude the meeting. As soon as she left, Carlos opened the door for Elise. She was still crying, but settled within a minute. Then, she clung very tight to me for 10 minutes. She would occassionally cry again and I discovered that she was having stomach pains. That was why her cry had changed. I felt like the worst mother in the world for not being there for her when she was in pain and needed my comfort. I feel very guilty for ignoring my instinct and listening to someone who is just passing through our lives.
Today I left work early to attend a mother's day party at the boys preschool. Each class sung a song and we had drinks and snacks. It was really nice. A decorated a flower pot and made flowers to put in it. B made a beaded bracelet for me. The school was crowded, so I parked far away. When I was walking from the car, I ran into another mother who has two boys almost the same age as my boys. Her youngest has been in therapy like Elise and there has been talk from her that he is on the spectrum. I know that I mentioned her in a post because I would get angry that she seemed to so obviously differentiate how her son was not as bad as Elise. Well, now I feel bad that I felt angry. She was doing that because she was in denial about her own son's autism. I can relate to that stage very well. Today she told me that he received a diagnosis yesterday from the school district. I told her that I was sorry to hear that because I know how hard it is to actually hear the diagnosis made, even if you suspected it. She seemed close to tears a few times. She is supposed to move out of the country this fall for her husband's work. Now, their lives will likely be turned upside down because she thinks she may need to stay here to get him the help he needs. She also has little family in the area, although she is very outgoing person and has lots of friends. I'm so reserved, but I finally just gave her a big hug and told her that there is so much reason to hope. I didn't say much more because I don't want to push information on her if she's not ready or doesn't want it. I offered that I could give her names of doctors we've used if she wants the diagnosis confirmed. As angry and hurt as I've felt with her in the past, there is zero satisfaction that this has sticken her family also. It's just awful, there's no other way to describe it. I feel very bad for them and the journey that they may just be starting.
That's been the synopsis of the last couple of weeks. And here we are - where will we be next?
Thursday, April 29, 2010
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