Today I had a talk with my boss about the commitment of time I have to make for Elise's treatment. I prepared ahead of time and laid out in direct terms how I planned to still meet all the appropriate deadlines. There was no statement of concern other than about how it would effect her and the company. The primary concern was how I would still manage to work 40 hours each week. I didn't expect any different, but I still feel really hurt by the lack of basic human compassion demonstrated. Hubby asked me if I thought the response would have been different if I'd said that she was diagnosed with cancer and I'd have to have a schedule flexible enough to meet her treatment schedule. Maybe it would have been, but I actually kind of doubt that. To me, treating her autism is no different than treating a cancer. We want to meet the challenge head on, fight the battle and never give up on a "cure". I know that conventional thought is that autism is not curable. I personally refuse to believe that Elise, while likely spending her life as an autistic, will not reach a point where she manages the symptoms so well that she will for all practical life purposes be cured. That is my ultimate goal in all of this and nothing, particularly the crappy place where I work, will stand in the way of this goal. That said, I'm going to try to suck it up and make this work for a few more months if for no other reason than having the additional insurance coverage and paying off our debt. The whole situation has given me an incredible headache.
Other than that, not much to post today. I'm just feeling really down right now by the lack of support. I've seen this happen so often to others at work. The phrase "kick 'em while they're down" has frequently been a thought I've had when seeing how employees have been treated. Well, the last few years have been my turn, first with the twin pregnancy and now with Elise's health. Finally, I'm just bitter. I just want to go somewhere where I never have to actively participate in the cruel business world again, somewhere where people are compassionate, supportive and helpful. Maybe I should just start fully believing in pretty pink unicorns and fairies while I'm at it...
Wednesday, September 30, 2009
Tuesday, September 29, 2009
Hectic Times
The rush continues. Today Elise had a few therapy sessions and also had a health assessment with the local school district. She did well. Hubby took her to therapy and I took her to the health assessment. This means that I still have time to make up at work and hubby had to return to work tonight. I guess that in therapy she was jumping on a trampoline when another boy joined her. She was really excited to play with him and even once kind of hugged him. She was laughing, making eye contact and really happy.
I spent some time on the phone today learning about a research study at the university. Elise qualifies for the study and I signed her up for it. It will run concurrently with the partial hospitalization program that she starts on the 15th. We'll have to take her to a detailed assessment at the autism research center where we can have genetic testing and other things done, all for free. Works for me. The more info we can discover, especially for free, is great. It requires an additional 1 hour of parent involvement each week, but it'll help defer our costs, so work will have to deal I guess. I need so many hours off already, what's one more each week?
We received the forms for the partial hospitalization program today. I now have a signed form from Elise's doctor to get a Disabled Person Placard for parking. I guess the parking is $11 a day, so the program provides the placards so that parent's can park for drop off and pick up. Seems strange to me. I swore I wouldn't take advantage of it and use it anytime other than for the specified purpose of taking Elise to the program. However, when I returned to work after Elise's health assessment today and had to keep winding up through the parking garage, I kept looking at all the great spots that would have been available if only I had the placard. Temptation is a difficult thing.
Things are generally going well. We're all just really stressed. Everyday seems to bring some new major stressor, even if there are good things about the stress, like maximizing help for Elise! I could just really use some time to slow down and relax. With an autistic child, there seems to be no end in sight for all the work.
I spent some time on the phone today learning about a research study at the university. Elise qualifies for the study and I signed her up for it. It will run concurrently with the partial hospitalization program that she starts on the 15th. We'll have to take her to a detailed assessment at the autism research center where we can have genetic testing and other things done, all for free. Works for me. The more info we can discover, especially for free, is great. It requires an additional 1 hour of parent involvement each week, but it'll help defer our costs, so work will have to deal I guess. I need so many hours off already, what's one more each week?
We received the forms for the partial hospitalization program today. I now have a signed form from Elise's doctor to get a Disabled Person Placard for parking. I guess the parking is $11 a day, so the program provides the placards so that parent's can park for drop off and pick up. Seems strange to me. I swore I wouldn't take advantage of it and use it anytime other than for the specified purpose of taking Elise to the program. However, when I returned to work after Elise's health assessment today and had to keep winding up through the parking garage, I kept looking at all the great spots that would have been available if only I had the placard. Temptation is a difficult thing.
Things are generally going well. We're all just really stressed. Everyday seems to bring some new major stressor, even if there are good things about the stress, like maximizing help for Elise! I could just really use some time to slow down and relax. With an autistic child, there seems to be no end in sight for all the work.
Sunday, September 27, 2009
Status Quo
Today I'm feeling much less in despair than yesterday, but I'm still very sad. Elise had a rough morning. She was difficult to engage and was doing a lot of stimming. By afternoon, she had taken care of her business for the day, thank you Miralax, and was back to doing well. I actually even managed to get in a "therapy" session playing with her. She helped me take clothing out of the washer, push the laundry basket to the dryer area (separate rooms in our place), and put the clothes in the dryer. She also helped me put dishes in the dishwasher and mix the pancakes in the morning. We played on her scooter and she said "Hat, Bike, Up, Go & Mamma" in about a half an hour time frame. For a child who was nearly non-verbal only a month ago, this is fantastic.
We also purchased beads and pipe cleaners at the store today. She easily strung the beads onto the pipe cleaners and maintained her attention to this craft for a 7 minute stretch once. At the store, we showed her a costume of tinkerbell and her face just lit. She's becoming a girly 2 year old finally! The beads she selected for our craft were mostly pink & she loves sorting through the stuffed animals and finding the pink ones. Yesterday at Costco, she was in awe of some of the Barbie doll sets. At the store today, we let her play with some of the toys. When it was time to move on, we'd tell her that at the count of 3 she had to give us the toy to put away. She did great transitioning. No tantrums at all. It's awesome that she liked the Tinkerbell costume because a friend of mine called today to ask if we would like a full set costume of Tinkerbell from the Disney store for Elise. Her daughter used it last year for Halloween. Elise will love it.
That's about all for today. Oh yeah, I forgot to mention that she attempted to engage her brothers in play tonight. I was so excited. I either haven't seen her do that in many months or I've never seen her do this. Can't remember which, it's all a blur. Either way, it was really special to see. Unfortunately, the boys missed the cue. I hope she wasn't discouraged. She also almost put together a puzzle that I've seen several adults (myself included) have to take some time to put together. She really seems to have a strong ability to visualize how things fit together.
Tomorrow Elise has school and nothing else. Tuesday is her health, vision & hearing screening for the school district. She also has speech and floor-time therapy Tuesday. Her schedule is becoming more intense than anyone else in the family and she's only 2. I just want to do everything we can to help her. Sometimes, like in the afternoon & evening today, she seems almost in reach. Then, when she's like she was in the morning, I feel hopeless and so sad. There's just no way to know what her future will hold.
We also purchased beads and pipe cleaners at the store today. She easily strung the beads onto the pipe cleaners and maintained her attention to this craft for a 7 minute stretch once. At the store, we showed her a costume of tinkerbell and her face just lit. She's becoming a girly 2 year old finally! The beads she selected for our craft were mostly pink & she loves sorting through the stuffed animals and finding the pink ones. Yesterday at Costco, she was in awe of some of the Barbie doll sets. At the store today, we let her play with some of the toys. When it was time to move on, we'd tell her that at the count of 3 she had to give us the toy to put away. She did great transitioning. No tantrums at all. It's awesome that she liked the Tinkerbell costume because a friend of mine called today to ask if we would like a full set costume of Tinkerbell from the Disney store for Elise. Her daughter used it last year for Halloween. Elise will love it.
That's about all for today. Oh yeah, I forgot to mention that she attempted to engage her brothers in play tonight. I was so excited. I either haven't seen her do that in many months or I've never seen her do this. Can't remember which, it's all a blur. Either way, it was really special to see. Unfortunately, the boys missed the cue. I hope she wasn't discouraged. She also almost put together a puzzle that I've seen several adults (myself included) have to take some time to put together. She really seems to have a strong ability to visualize how things fit together.
Tomorrow Elise has school and nothing else. Tuesday is her health, vision & hearing screening for the school district. She also has speech and floor-time therapy Tuesday. Her schedule is becoming more intense than anyone else in the family and she's only 2. I just want to do everything we can to help her. Sometimes, like in the afternoon & evening today, she seems almost in reach. Then, when she's like she was in the morning, I feel hopeless and so sad. There's just no way to know what her future will hold.
Saturday, September 26, 2009
Up and Down
Today was a busy day. Elise had occupational therapy in the morning. Hubby took her and said that she did well. The boys had haircuts in the morning and then played in a park. After lunch, I had a filling removed and a temporary cap put in place. Then, off to Costco and dinner out. In between it all, I tried to fill out and organize the paperwork that has been piling with all of Elise's appointments, evaluations and you name it.
Yesterday, hubby and I had lunch with his colleague and wife. They have 2 boys, one in college and the other in high school, that are autistic. It was wonderful to have their support and talk with them about their experiences with everything on their 15 year or so journey. We talked about insurance issues, special education, what they found helped their boys the most, the doctor Elise is seeing, the UCLA program and lots of other things. They were particularly helpful about the IEP (individualized education plan) process. They've been through it many times, the wife's sister is a special education teacher & the wife is an experienced advocate for special education concerns. She is going to send us some excellent materials prepared by a lawyer teaching parents how to navigate the process.
To me, Elise has seemed a bit more off the last couple of days. Yesterday she was getting visibly overwhelmed often and was harder to reach. Today was better, but not as good as during the week. She ate McDonald's for lunch and pizza for dinner - not only was this not nutritious, I really believe she doesn't tolerate these types of foods well. I'm becoming quite a believer that dietary changes will help her. We were moving towards the GFCF diet and, except for eating out, have pretty much eliminated artifical flavouring, articifical colors and dyes & preservatives and now eat more organic fruits and vegetables to help reduce the pesticide exposure she has. The UCLA program suggested we not continue changing her diet so that we'll know the effect of the treatment she is receiving. If she's undergoing dietary changes and behavior therapy, how would we know which is helping (or not helping) her? That sounds reasonable, so we're keeping things where they are for now. Once the program ends, we'll likely resume and implement the full diet. At the very least, I'm very suspicious of dairy products for her. After her terrible diet yesterday, she's totally constipated again today. Keep in mind that she's still taking an antibiotic that has a side effect for some of diarrhea. She's the opposite! Of course, I also forgot to give her the probiotics this morning.
What's really made this a difficult day is that I'm completing yet another questionnaire for evaluation. The last few weeks, I've been really successful and hopeful as I've focused on her strengths and the victories we've had recently. Well, completing the questionnaires just drives home her deficiencies. It's really difficult to see I have to honestly answer "Some of the Time" to the statement "You can easily get your child's attention by approaching him or her, or moving him or her around slowly." I can't even honestly answer "Half of the Time" to that statement. Then, I look and see this is a criteria that parents answer for children from 0-3 months old also. It just makes me feel so depressed and that the gains we're making are pointless in a way. She's still so deficient in so many things. I'm trying to turn my thinking around on this and instead focus on how much more positively I can answer some of these statements since the first time I completed this 6 months ago. It just makes me realize how far we have to go and how some of these things may realistically never be achieved. That's what I'm feeling right now. Hopefully the morning will bring a more sunshiny view of things.
The other thing that has me really down today is having to write a letter to her school to withdraw her. I can't even begin to imagine how difficult it's going to be to pack up her things on the day she leaves. Her school is taking pictures on Thursday. Hubby made the comment this morning that we should get her class picture so that we can remember that once upon a time she was in a "regular" classroom. That was when it really hit me. Having her leave the school is best for her right now, but it's seems so final and like fully admitting that she doesn't function well in the regular world. She truly is special needs. It's unbelievably difficult to accept this. Just thinking about this makes me start to cry. It's funny the things that will just make me step back and realize the magnitude of what is happening to our family, mostly to her. It just seems so awful. I know there is lots of reason to hope and I know I'll find reasons to hope again tomorrow, but for today, I'm feeling despair.
When I focus on the tasks at hand for any given day, things are much easier to handle. It's when I focus on the uncertain future that things seem so out of hand. Good night.
Yesterday, hubby and I had lunch with his colleague and wife. They have 2 boys, one in college and the other in high school, that are autistic. It was wonderful to have their support and talk with them about their experiences with everything on their 15 year or so journey. We talked about insurance issues, special education, what they found helped their boys the most, the doctor Elise is seeing, the UCLA program and lots of other things. They were particularly helpful about the IEP (individualized education plan) process. They've been through it many times, the wife's sister is a special education teacher & the wife is an experienced advocate for special education concerns. She is going to send us some excellent materials prepared by a lawyer teaching parents how to navigate the process.
To me, Elise has seemed a bit more off the last couple of days. Yesterday she was getting visibly overwhelmed often and was harder to reach. Today was better, but not as good as during the week. She ate McDonald's for lunch and pizza for dinner - not only was this not nutritious, I really believe she doesn't tolerate these types of foods well. I'm becoming quite a believer that dietary changes will help her. We were moving towards the GFCF diet and, except for eating out, have pretty much eliminated artifical flavouring, articifical colors and dyes & preservatives and now eat more organic fruits and vegetables to help reduce the pesticide exposure she has. The UCLA program suggested we not continue changing her diet so that we'll know the effect of the treatment she is receiving. If she's undergoing dietary changes and behavior therapy, how would we know which is helping (or not helping) her? That sounds reasonable, so we're keeping things where they are for now. Once the program ends, we'll likely resume and implement the full diet. At the very least, I'm very suspicious of dairy products for her. After her terrible diet yesterday, she's totally constipated again today. Keep in mind that she's still taking an antibiotic that has a side effect for some of diarrhea. She's the opposite! Of course, I also forgot to give her the probiotics this morning.
What's really made this a difficult day is that I'm completing yet another questionnaire for evaluation. The last few weeks, I've been really successful and hopeful as I've focused on her strengths and the victories we've had recently. Well, completing the questionnaires just drives home her deficiencies. It's really difficult to see I have to honestly answer "Some of the Time" to the statement "You can easily get your child's attention by approaching him or her, or moving him or her around slowly." I can't even honestly answer "Half of the Time" to that statement. Then, I look and see this is a criteria that parents answer for children from 0-3 months old also. It just makes me feel so depressed and that the gains we're making are pointless in a way. She's still so deficient in so many things. I'm trying to turn my thinking around on this and instead focus on how much more positively I can answer some of these statements since the first time I completed this 6 months ago. It just makes me realize how far we have to go and how some of these things may realistically never be achieved. That's what I'm feeling right now. Hopefully the morning will bring a more sunshiny view of things.
The other thing that has me really down today is having to write a letter to her school to withdraw her. I can't even begin to imagine how difficult it's going to be to pack up her things on the day she leaves. Her school is taking pictures on Thursday. Hubby made the comment this morning that we should get her class picture so that we can remember that once upon a time she was in a "regular" classroom. That was when it really hit me. Having her leave the school is best for her right now, but it's seems so final and like fully admitting that she doesn't function well in the regular world. She truly is special needs. It's unbelievably difficult to accept this. Just thinking about this makes me start to cry. It's funny the things that will just make me step back and realize the magnitude of what is happening to our family, mostly to her. It just seems so awful. I know there is lots of reason to hope and I know I'll find reasons to hope again tomorrow, but for today, I'm feeling despair.
When I focus on the tasks at hand for any given day, things are much easier to handle. It's when I focus on the uncertain future that things seem so out of hand. Good night.
Thursday, September 24, 2009
GREAT NEWS!
Today, UCLA called and Elise will be starting the partial hospitalization program on Oct 15. It's going to be quite a feat to balance everything and I have no idea how we'll manage, but we have to manage because the program should help her immensely. The committment of time from the parents is also considerable, so I'm worried about the balance with work. I don't work at the most accomodating place and I haven't been there long enough for the FMLA to be applicable. I guess we'll figure it all out over the next 2 weeks, but it's rather overwhelming right now. It's still good news.
Other than that, not much is going on right now. My work finally received the funding from the billionaire that was giving them money. He now owns 90% of the company and the company is now in a good financial position. The CFO brought in champagne to celebrate. We had the champagne at 4, about 2 minutes after I received the UCLA news. The smile on my face didn't have much to do with the company and the funding, but I bet my happiness probably made it look like I cared - lol!
Other than that, not much is going on right now. My work finally received the funding from the billionaire that was giving them money. He now owns 90% of the company and the company is now in a good financial position. The CFO brought in champagne to celebrate. We had the champagne at 4, about 2 minutes after I received the UCLA news. The smile on my face didn't have much to do with the company and the funding, but I bet my happiness probably made it look like I cared - lol!
Wednesday, September 23, 2009
More Good Times
Today Elise had her evaluation with the school district. There was a psychologist, a speech therapist and an occupational therapist reviewing her. She did really well in the evaluation and I think she provided an excellent representation of where her strengths & weaknesses lie. She was definitely autistic, but she demonstrated that she has the ability to learn. She even easily put together a puzzle of a boy where the pieces weren't in separate shapes and without pictures to guide her. She also said animal sounds and signed more a few times. She caught a ball, threw it-up in the air, not to the therapist :p - and kicked it. She also stacked blocks very adeptly. I was proud of her and I think she was really proud of herself. We'll see how the IEP goes. The lady coordinating her IEP is scheduling visits for us to various area preschool programs. I'm excited to see what opportunities there will be for her education.
The reason I feel so positive about the evaluation was because the evaluators only had read her initial reports from 6 months ago. We hadn't really realized how much progress she'd made until we saw that their expectations for her were quite a bit lower than what she demonstrated. It was really nice to have people focused on how far she's come instead of how far she needs to go. They also complimented how well we handle transitioning her. We hadn't realized how adept we were at that until we saw how difficult it was for them to transition her.
Not much else going on today. This evening, Elise wanted to mostly play alone. I think she was tired and, since I was mostly alone with the 3 kids, it was difficult to make a huge effort to involve her. We had moments of connection, but mostly she took a break this evening and did her own thing. Last night she didn't wake the whole night! Let's hope for another night like that.
The reason I feel so positive about the evaluation was because the evaluators only had read her initial reports from 6 months ago. We hadn't really realized how much progress she'd made until we saw that their expectations for her were quite a bit lower than what she demonstrated. It was really nice to have people focused on how far she's come instead of how far she needs to go. They also complimented how well we handle transitioning her. We hadn't realized how adept we were at that until we saw how difficult it was for them to transition her.
Not much else going on today. This evening, Elise wanted to mostly play alone. I think she was tired and, since I was mostly alone with the 3 kids, it was difficult to make a huge effort to involve her. We had moments of connection, but mostly she took a break this evening and did her own thing. Last night she didn't wake the whole night! Let's hope for another night like that.
Tuesday, September 22, 2009
Productive Day
Elise had 4 hours of therapy today. She spent 2 hours with her Speech Therapist (ST). 1 of those hours was co-taught with her floor-time specialist. In the evening, her floor-time specialist came to the house and played with all the kids for another hour. Elise was having another great day. We heard several words, she followed simple instructions fairly well and she communicated her needs and wants well. Her eye contact is drastically better and she greeted and acknowledged her therapist's hello and goodbye today. She's recently showing a lot of great progress.
Yesterday, Elise spent the morning at school with her floor-time specialist. She did well and even joined circle time. Her therapist had her sit and participate instead of wandering away like she's inclined to do when left on her own. Now that she's seen her at school, her therapist has a similar conclusion to what we were thinking. The school is good for her in that she interacts and sees typically developing peers. Until a more intensive program is available for her, this is not a bad place for her to be. However, the school is not equipped to handle a child with special needs and she really needs one-on-one instruction for right now. This is a decent temporary solution until her special education starts.
Today was also very productive in moving forward on Elise's treatment. Her service coordinator e-mailed to say that she had passed off the ABA request to her supervisor already. The ABA provider called to see when/if we are ready to start services for Elise. The answer is a definite YES!, but we are unable to do so until we get some funding worked out with EI services and our insurance provider. It's not something we can afford on our own. The dietician returned my call, but it went to my voicemail. I'll call her back tomorrow. Her message was very cheerful! Carlos' colleague offered to provide us with lots of good autism information. He has 2 autistic children. His oldest is very high-functioning and is now in college. His youngest is much more severe, but has made great strides. We're hoping he'll have some helpful insight into navigating Carlos' insurance for coverage for Elise since he has the same insurance and his family has received good services. Another good thing is that my friend K provided me the number of her friend who has an autistic child and lives in a very nearby neighborhood. Her son is 6 and she offered to speak with us to tell us her experiences of the good, bad and ugly of various treatments and education opportunities. Anyway, we're making it through this maze slowly but surely. It's amazing to me how much people can rally to help when you are in a time of need. When I told K about Elise, she actually had tears in her eyes. She's turned out to be such a wonderful and unexpected friend.
I hope this upswing continues for a long time. Things are going really well right now.
I forgot to mention how well Elise did during her ST. She was jumping on the trampoline when another boy, probably autistic also, entered the room. They jumped together and Elise spent a lot of time trying to engage him to play. She was so happy to have a child to jump with her and she laughed a lot. Her social ability is so much better. She's more like how she used to be when she was 1.
Tomorrow will be difficult because Elise will be undergoing a 2 hour evaluation with the local school district. She'll see a psychologist, a speech therapist and an occupational therapist. Poor Elise, it must be so hard to be evaluated over and over again. Unfortunately it's a necessary evil to get her the help she needs.
Yesterday, Elise spent the morning at school with her floor-time specialist. She did well and even joined circle time. Her therapist had her sit and participate instead of wandering away like she's inclined to do when left on her own. Now that she's seen her at school, her therapist has a similar conclusion to what we were thinking. The school is good for her in that she interacts and sees typically developing peers. Until a more intensive program is available for her, this is not a bad place for her to be. However, the school is not equipped to handle a child with special needs and she really needs one-on-one instruction for right now. This is a decent temporary solution until her special education starts.
Today was also very productive in moving forward on Elise's treatment. Her service coordinator e-mailed to say that she had passed off the ABA request to her supervisor already. The ABA provider called to see when/if we are ready to start services for Elise. The answer is a definite YES!, but we are unable to do so until we get some funding worked out with EI services and our insurance provider. It's not something we can afford on our own. The dietician returned my call, but it went to my voicemail. I'll call her back tomorrow. Her message was very cheerful! Carlos' colleague offered to provide us with lots of good autism information. He has 2 autistic children. His oldest is very high-functioning and is now in college. His youngest is much more severe, but has made great strides. We're hoping he'll have some helpful insight into navigating Carlos' insurance for coverage for Elise since he has the same insurance and his family has received good services. Another good thing is that my friend K provided me the number of her friend who has an autistic child and lives in a very nearby neighborhood. Her son is 6 and she offered to speak with us to tell us her experiences of the good, bad and ugly of various treatments and education opportunities. Anyway, we're making it through this maze slowly but surely. It's amazing to me how much people can rally to help when you are in a time of need. When I told K about Elise, she actually had tears in her eyes. She's turned out to be such a wonderful and unexpected friend.
I hope this upswing continues for a long time. Things are going really well right now.
I forgot to mention how well Elise did during her ST. She was jumping on the trampoline when another boy, probably autistic also, entered the room. They jumped together and Elise spent a lot of time trying to engage him to play. She was so happy to have a child to jump with her and she laughed a lot. Her social ability is so much better. She's more like how she used to be when she was 1.
Tomorrow will be difficult because Elise will be undergoing a 2 hour evaluation with the local school district. She'll see a psychologist, a speech therapist and an occupational therapist. Poor Elise, it must be so hard to be evaluated over and over again. Unfortunately it's a necessary evil to get her the help she needs.
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