Good Days/Bad Days. The good in the last week or so have been outweighing the bad. I probably just jinxed myself there but we'll see.
Avery had a bit of a cold last week and sometimes when that happens, her sensory issues get all wrangled up and it's a step back for her. So last Friday her OT therapy was the suck. She generally was in a pissy mood. Then over the weekend she seemed to get over it. At one point during the weekend her sister was crying and Avery offered her her flamingo that she carries with her to console her. That was very sweet of her and showed that she is becoming cognizant of other's feelings. When I ask her for kisses she can be hesitant to pucker up but eventually she will but she also wants me to give the flamingo kisses to.
I've started to get things organized to get her signed up for preschool. Getting her follow up appointment scheduled with the specialists downtown and then her evaluation with the school district will be lined up.
The other day I had an opportunity to meet up with the Dr who delivered her. < read between the lines, ladies you'll figure it out > He is a very caring, compassionate Dr and I truly loved going to him when I was pregnant with both of my girls. So I told him that the baby he delivered has Autism. I felt bad telling him. I didn't want to depress him. He said he likes to know what happens with the babies he delivers. He sat and listened to me as I told him her story. I could tell by his expressions on his face that it did effect him knowing this information.
I guess I thought he should know. My friend and I talked about it the next day and asked ourselves a few questions...Do they keep track of these things? Should they keep track of these things? Should they keep track of the outcome of high risk pregnancies? (such as I was). We were generalizing keeping track of these things for our area vs other areas. I told him I don't really ask the why or the how it happened because that does me no good right now. I have to think of the now and the future.
I did my best at not breaking down in the exam room. So I switched gears and talked about the marathon. He did enjoy my marathon story and was just as surprised as I was that they didn't even have one medic team at the end.
As I'm typing this I realize that while I was talking to my Dr about this that I really should go talk to my therapist about this. I haven't yet. I don't want to go to a support group with other parents either. I am already dreading the Autism Conference I am going to in May. My anxiety gets high just thinking of 1) being in crowded places (hello starting lines are a bitch for me) and 2) my opinions I feel about Autism don't get validated because I'm a fresh Autism Mom. Though I've been reading about Autism for years in general but only recently had to direct majority of my energy towards it.
eh. So I guess I have my issues with some things that have been in my thoughts lately. I guess it's just another thing I need to add to "To work on" list.
Thursday, March 10, 2011
Thursday Triumphs and thoughts
Good Days/Bad Days. The good in the last week or so have been outweighing the bad. I probably just jinxed myself there but we'll see.
Avery had a bit of a cold last week and sometimes when that happens, her sensory issues get all wrangled up and it's a step back for her. So last Friday her OT therapy was the suck. She generally was in a pissy mood. Then over the weekend she seemed to get over it. At one point during the weekend her sister was crying and Avery offered her her flamingo that she carries with her to console her. That was very sweet of her and showed that she is becoming cognizant of other's feelings. When I ask her for kisses she can be hesitant to pucker up but eventually she will but she also wants me to give the flamingo kisses to.
I've started to get things organized to get her signed up for preschool. Getting her follow up appointment scheduled with the specialists downtown and then her evaluation with the school district will be lined up.
The other day I had an opportunity to meet up with the Dr who delivered her. < read between the lines, ladies you'll figure it out > He is a very caring, compassionate Dr and I truly loved going to him when I was pregnant with both of my girls. So I told him that the baby he delivered has Autism. I felt bad telling him. I didn't want to depress him. He said he likes to know what happens with the babies he delivers. He sat and listened to me as I told him her story. I could tell by his expressions on his face that it did effect him knowing this information.
I guess I thought he should know. My friend and I talked about it the next day and asked ourselves a few questions...Do they keep track of these things? Should they keep track of these things? Should they keep track of the outcome of high risk pregnancies? (such as I was). We were generalizing keeping track of these things for our area vs other areas. I told him I don't really ask the why or the how it happened because that does me no good right now. I have to think of the now and the future.
I did my best at not breaking down in the exam room. So I switched gears and talked about the marathon. He did enjoy my marathon story and was just as surprised as I was that they didn't even have one medic team at the end.
As I'm typing this I realize that while I was talking to my Dr about this that I really should go talk to my therapist about this. I haven't yet. I don't want to go to a support group with other parents either. I am already dreading the Autism Conference I am going to in May. My anxiety gets high just thinking of 1) being in crowded places (hello starting lines are a bitch for me) and 2) my opinions I feel about Autism don't get validated because I'm a fresh Autism Mom. Though I've been reading about Autism for years in general but only recently had to direct majority of my energy towards it.
eh. So I guess I have my issues with some things that have been in my thoughts lately. I guess it's just another thing I need to add to "To work on" list.
Avery had a bit of a cold last week and sometimes when that happens, her sensory issues get all wrangled up and it's a step back for her. So last Friday her OT therapy was the suck. She generally was in a pissy mood. Then over the weekend she seemed to get over it. At one point during the weekend her sister was crying and Avery offered her her flamingo that she carries with her to console her. That was very sweet of her and showed that she is becoming cognizant of other's feelings. When I ask her for kisses she can be hesitant to pucker up but eventually she will but she also wants me to give the flamingo kisses to.
I've started to get things organized to get her signed up for preschool. Getting her follow up appointment scheduled with the specialists downtown and then her evaluation with the school district will be lined up.
The other day I had an opportunity to meet up with the Dr who delivered her. < read between the lines, ladies you'll figure it out > He is a very caring, compassionate Dr and I truly loved going to him when I was pregnant with both of my girls. So I told him that the baby he delivered has Autism. I felt bad telling him. I didn't want to depress him. He said he likes to know what happens with the babies he delivers. He sat and listened to me as I told him her story. I could tell by his expressions on his face that it did effect him knowing this information.
I guess I thought he should know. My friend and I talked about it the next day and asked ourselves a few questions...Do they keep track of these things? Should they keep track of these things? Should they keep track of the outcome of high risk pregnancies? (such as I was). We were generalizing keeping track of these things for our area vs other areas. I told him I don't really ask the why or the how it happened because that does me no good right now. I have to think of the now and the future.
I did my best at not breaking down in the exam room. So I switched gears and talked about the marathon. He did enjoy my marathon story and was just as surprised as I was that they didn't even have one medic team at the end.
As I'm typing this I realize that while I was talking to my Dr about this that I really should go talk to my therapist about this. I haven't yet. I don't want to go to a support group with other parents either. I am already dreading the Autism Conference I am going to in May. My anxiety gets high just thinking of 1) being in crowded places (hello starting lines are a bitch for me) and 2) my opinions I feel about Autism don't get validated because I'm a fresh Autism Mom. Though I've been reading about Autism for years in general but only recently had to direct majority of my energy towards it.
eh. So I guess I have my issues with some things that have been in my thoughts lately. I guess it's just another thing I need to add to "To work on" list.
Wednesday, February 23, 2011
Why do I blog?
The blog is where I write my thoughts, discuss my problems with running or issues with Avery's Autism.
If you are a part of my family and you think this blog is to humiliate or embarrass a family member you are sorely mistaken. If you think lowly of this family member because he is human and has had a hard time coming to terms with Avery's diagnosis than you are not viewing him very fairly. And it is your issue and not mine.
Why am I writing this? I have mentioned my Dad a few times on this blog. In fact yesterday afternoon after being in hysterics for hours I went through the blog and counted about less than a handful of posts that mention my father. I was so upset yesterday after a phone call from a family member I scared my oldest daughter who didn't understand why I was upset and crying. Who then proceeded to tell the school bus driver that Mommy was crying. Awesome.
In the beginning months after Avery's diagnosis of Autism my Dad being my father, my children's grandfather and general overly protective loving parent had a hard time with Avery's diagnosis. He didn't think she had it, he didn't understand how the play therapy was going to help. That's not his fault though. That's just how many older family members view a diagnosis of Autism through out the special needs community. Through all the blogs I've seen on Autism it seems that many grandparents are left hurt, bewildered and lost in how to help their children. All they want to do is help in some way.
I previously had a meltdown a few months ago about something that happened as I was leaving to take Avery to therapy and my Dad was staying with Paige like he does every Friday when I take Avery to therapy. So when I came home from that therapy session I looked through the internet and found this article: Grandparenting Special Needs Children. It is a wonderful article that outlines what they as a grandparent can do to help. I also printed out articles about the different type of therapies she would be doing. I printed out articles on sensory processing disorders and ways she needs to regulate themselves. I wanted him to understand our world a little bit more. I believe after giving him these articles in an non-confrontational way that he was receptive of the information and took it to heart. Because since then things on that front have been much better.
So if you have the misconception that my Dad is not helpful, or a jerk or ignorant about Avery having Autism than you probably should pick up the phone and call me because that is not how the situation is. In fact what would be really nice is if you are a family member and you think of my Dad, how about giving him a call? I'm sure he would like that.
On that note I know many people have heard Avery had Autism through the grapevine but I have never heard from them. Besides the one's who recently heard through my letter of donation request, I have not heard a single peep from other family and friends. You might not know what to say and that's ok. Heck even on our good days I still don't know what to say. So while we deal with Avery's diagnosis as a family the prayers are appreciative but knowing my family and friends are supportive and helpful means more right now. Autism is not a death sentence for a child or a FAMILY. I would hope that Autism can bring families closer because I know it is stressful, it should not tear them apart but bring them together.
It may seem like I am airing my families dirty laundry and I probably am in a small way. I just wanted to clear things up for those silent family followers. What we need is support. What I don't need is someone calling me berating me for how they perceive I describe my father when they are not in our lives in a day to day basis.
This post will be closed to comments today. Thank you for your support
If you are a part of my family and you think this blog is to humiliate or embarrass a family member you are sorely mistaken. If you think lowly of this family member because he is human and has had a hard time coming to terms with Avery's diagnosis than you are not viewing him very fairly. And it is your issue and not mine.
Why am I writing this? I have mentioned my Dad a few times on this blog. In fact yesterday afternoon after being in hysterics for hours I went through the blog and counted about less than a handful of posts that mention my father. I was so upset yesterday after a phone call from a family member I scared my oldest daughter who didn't understand why I was upset and crying. Who then proceeded to tell the school bus driver that Mommy was crying. Awesome.
In the beginning months after Avery's diagnosis of Autism my Dad being my father, my children's grandfather and general overly protective loving parent had a hard time with Avery's diagnosis. He didn't think she had it, he didn't understand how the play therapy was going to help. That's not his fault though. That's just how many older family members view a diagnosis of Autism through out the special needs community. Through all the blogs I've seen on Autism it seems that many grandparents are left hurt, bewildered and lost in how to help their children. All they want to do is help in some way.
I previously had a meltdown a few months ago about something that happened as I was leaving to take Avery to therapy and my Dad was staying with Paige like he does every Friday when I take Avery to therapy. So when I came home from that therapy session I looked through the internet and found this article: Grandparenting Special Needs Children. It is a wonderful article that outlines what they as a grandparent can do to help. I also printed out articles about the different type of therapies she would be doing. I printed out articles on sensory processing disorders and ways she needs to regulate themselves. I wanted him to understand our world a little bit more. I believe after giving him these articles in an non-confrontational way that he was receptive of the information and took it to heart. Because since then things on that front have been much better.
So if you have the misconception that my Dad is not helpful, or a jerk or ignorant about Avery having Autism than you probably should pick up the phone and call me because that is not how the situation is. In fact what would be really nice is if you are a family member and you think of my Dad, how about giving him a call? I'm sure he would like that.
On that note I know many people have heard Avery had Autism through the grapevine but I have never heard from them. Besides the one's who recently heard through my letter of donation request, I have not heard a single peep from other family and friends. You might not know what to say and that's ok. Heck even on our good days I still don't know what to say. So while we deal with Avery's diagnosis as a family the prayers are appreciative but knowing my family and friends are supportive and helpful means more right now. Autism is not a death sentence for a child or a FAMILY. I would hope that Autism can bring families closer because I know it is stressful, it should not tear them apart but bring them together.
It may seem like I am airing my families dirty laundry and I probably am in a small way. I just wanted to clear things up for those silent family followers. What we need is support. What I don't need is someone calling me berating me for how they perceive I describe my father when they are not in our lives in a day to day basis.
This post will be closed to comments today. Thank you for your support
Saturday, February 19, 2011
Somewhat thankful to be living in Illinois
Not because we had a blizzard 2 weeks ago and today was 48 and sunny and no more snow.
Not because our state is bankrupt.
Not because it takes weeks on end for service providers in the state of IL to get paid by the state.
Not because if I didn't have friends already in Early Intervention or if I didn't learn my way around EI the first time around I would be clueless about how to get shit done.
But I am thankful because it could be worse.
It could be Wisconsin where there is so much turmoil that politicians have come to OUR state to hide out.
Where there is a good chance that a bill would be signed into law that will cut services for kids like Avery. Services like Respite Care could be cut or eliminated. This is part of the big bill the Governor of Wisconsin wants to pass at lightening speed but it's tucked way down in there. You can learn more about it at Elvis Sightings.
Now why is respite care so important? It's important so family members who care for special needs children can get a break to do normal things like go to the store, go out to dinner with their spouse or go to therapy with their spouse. Families with special needs kids or autistic kids have a tremendous fear of who can take care of their child for just a few hours. Will they know what to do when an autistic kid has a meltdown and starts banging their head? From what I gather from the blogs of parents who have an autistic child that their state either offers respite care OR they do and it's a huge ass circle jerk to get it such as what Sarah experienced here: Intake Specialist.
I read that story today after I had an appointment with our local respite care representative to be put on the waiting list for help. Back in October my friend told me to try to get on the list after Avery's diagnosis but she said it's about a 2-3 YEAR waiting list. I procrastinated because I thought YEARS waiting list and who knows where we will be living etc. Just I did not jump on it.
Oh and respite care was NOT something that my Early Intervention case worker talked about. I had heard about it a long time ago from another friend who mentioned it for the friend who told me to sign up. So last week the above said friend called and said she got pulled for the list! She finally made it. Now it was only a couple of months and she had just called in October herself. Ok see where this big slap on the head with my palm is coming? Yeah DER. I should have done this back in October. Now instead of years it's only a few months to get respite care. Which for us would be 15 hours of childcare during the month for both kids. Which means I could oh I don't know actually get a hair cut and not worry that someone's diaper wouldn't be changed when I got back. Or that someone can actually handle Avery and understand that yes she does have AUTISM and she is not just slow to talk.
I know there are parents who have it worse than we do especially when it comes to the severity of what part of the spectrum their child is on. Some parents don't even know who to turn to for help and some parents have to deal with morons who in the end can't help their child. Which sucks big time.
I read the blogs of angry parents who have to deal with so much and that's when I consider myself lucky to be living in Illinois. It may take awhile, it may be more work but eventually she'll get the care that she deserves and we'll get the help that we need.
Not because our state is bankrupt.
Not because it takes weeks on end for service providers in the state of IL to get paid by the state.
Not because if I didn't have friends already in Early Intervention or if I didn't learn my way around EI the first time around I would be clueless about how to get shit done.
But I am thankful because it could be worse.
It could be Wisconsin where there is so much turmoil that politicians have come to OUR state to hide out.
Where there is a good chance that a bill would be signed into law that will cut services for kids like Avery. Services like Respite Care could be cut or eliminated. This is part of the big bill the Governor of Wisconsin wants to pass at lightening speed but it's tucked way down in there. You can learn more about it at Elvis Sightings.
Now why is respite care so important? It's important so family members who care for special needs children can get a break to do normal things like go to the store, go out to dinner with their spouse or go to therapy with their spouse. Families with special needs kids or autistic kids have a tremendous fear of who can take care of their child for just a few hours. Will they know what to do when an autistic kid has a meltdown and starts banging their head? From what I gather from the blogs of parents who have an autistic child that their state either offers respite care OR they do and it's a huge ass circle jerk to get it such as what Sarah experienced here: Intake Specialist.
I read that story today after I had an appointment with our local respite care representative to be put on the waiting list for help. Back in October my friend told me to try to get on the list after Avery's diagnosis but she said it's about a 2-3 YEAR waiting list. I procrastinated because I thought YEARS waiting list and who knows where we will be living etc. Just I did not jump on it.
Oh and respite care was NOT something that my Early Intervention case worker talked about. I had heard about it a long time ago from another friend who mentioned it for the friend who told me to sign up. So last week the above said friend called and said she got pulled for the list! She finally made it. Now it was only a couple of months and she had just called in October herself. Ok see where this big slap on the head with my palm is coming? Yeah DER. I should have done this back in October. Now instead of years it's only a few months to get respite care. Which for us would be 15 hours of childcare during the month for both kids. Which means I could oh I don't know actually get a hair cut and not worry that someone's diaper wouldn't be changed when I got back. Or that someone can actually handle Avery and understand that yes she does have AUTISM and she is not just slow to talk.
I know there are parents who have it worse than we do especially when it comes to the severity of what part of the spectrum their child is on. Some parents don't even know who to turn to for help and some parents have to deal with morons who in the end can't help their child. Which sucks big time.
I read the blogs of angry parents who have to deal with so much and that's when I consider myself lucky to be living in Illinois. It may take awhile, it may be more work but eventually she'll get the care that she deserves and we'll get the help that we need.
Thursday, February 10, 2011
Thursday Triumphs
It's Tuesday and I'm already putting things down so I don't forget what the little stinker has been up to.
She's voicing her opinion more. Even if it's not in all words she's telling me NO in a big way. The other night she came in the kitchen for dinner and she looked up on the table (her teachers at school tell me that she is the ONLY kid in her classes who constantly is looking up on tables). She saw what was for dinner and kindly put her fork on top of it and refused to sit down in her seat to even try it. After 5 mins of trying to get her to stop her crying and trying to get her to sit down I gave up because it was coming to her having a complete meltdown and I wanted to avoid that.
She's also been spontaneously saying more words for her therapists. Her OT is getting what her "Up" sounds like, it's very high pitched but you get the jist. If you don't act fast enough to pick her up she puts your hands under her arms to get you to do it.
On Monday she said the word dog for her speech therapist without being prompted 2x.There are other things she'll say when prompted. We are getting more hiiii's and byeeee's from her.
At school on Monday I was the mom helper and got to see her in action with the older kids. These kids in this class are more around the age of 3+ and understand Avery's issues a bit more. They kinda of seem to let her do her own thing when I observed them. They know she doesn't have her words but they seem to be ok with it. Compared to how she was in the Thursday class I observed last semester it was a big improvement.
When it came to circle time when they brought out her space saver high chair, she went right over and sat in it and waited for someone to put the tray on it. Then she sat and observed circle/story time while snacking on some skittles (it's key for her to have something to snack on or she gets distracted). After circle time she lined up like the rest of the kids to walk to the wiggle room. She walked like a good kid to the play room and went on about her own plan to play wherever. She went down the slide and did the trampoline which she didn't want to do last time I was there.
Then at one point she grabbed a sippy cup from the basket they brought into the room. I asked her a couple of times to return it to the basket when she was done. By the 5th time of me asking you could tell she was getting irritated. Then she stopped in her tracks, thought about it and put the cup back in the basket!!!!!! HUGE. We were all excited for her and kept saying "Yay! Avery!" and you could tell how happy she was with her self. She was just one big smile.
After the wiggle room they went back to the room for snack time and art. She went right to her seat and waited for her tray and snack and cup. She's made good progress in the last few months. I don't know if it's just that class is so much better for her than the Thursday class (younger kids and one little girl who is always up.in.her.bizness.annoying) but she seemed happier.
In general she seam's to have moved past the point where she was hitting herself a lot a few weeks ago. Fingers crossed we can figure out what her trigger's are so we can reduce them in the future.
If you would like to help with my fundraising for Team Avery - Don't Stop Believing please do so if you can! the website will take any amount for donations. I am hoping to get to my minimum ASAP so I can get my bib for Chicago ASAP because I'm so scared it will sell out. Thank you for any support!
She's voicing her opinion more. Even if it's not in all words she's telling me NO in a big way. The other night she came in the kitchen for dinner and she looked up on the table (her teachers at school tell me that she is the ONLY kid in her classes who constantly is looking up on tables). She saw what was for dinner and kindly put her fork on top of it and refused to sit down in her seat to even try it. After 5 mins of trying to get her to stop her crying and trying to get her to sit down I gave up because it was coming to her having a complete meltdown and I wanted to avoid that.
She's also been spontaneously saying more words for her therapists. Her OT is getting what her "Up" sounds like, it's very high pitched but you get the jist. If you don't act fast enough to pick her up she puts your hands under her arms to get you to do it.
On Monday she said the word dog for her speech therapist without being prompted 2x.There are other things she'll say when prompted. We are getting more hiiii's and byeeee's from her.
At school on Monday I was the mom helper and got to see her in action with the older kids. These kids in this class are more around the age of 3+ and understand Avery's issues a bit more. They kinda of seem to let her do her own thing when I observed them. They know she doesn't have her words but they seem to be ok with it. Compared to how she was in the Thursday class I observed last semester it was a big improvement.
When it came to circle time when they brought out her space saver high chair, she went right over and sat in it and waited for someone to put the tray on it. Then she sat and observed circle/story time while snacking on some skittles (it's key for her to have something to snack on or she gets distracted). After circle time she lined up like the rest of the kids to walk to the wiggle room. She walked like a good kid to the play room and went on about her own plan to play wherever. She went down the slide and did the trampoline which she didn't want to do last time I was there.
Then at one point she grabbed a sippy cup from the basket they brought into the room. I asked her a couple of times to return it to the basket when she was done. By the 5th time of me asking you could tell she was getting irritated. Then she stopped in her tracks, thought about it and put the cup back in the basket!!!!!! HUGE. We were all excited for her and kept saying "Yay! Avery!" and you could tell how happy she was with her self. She was just one big smile.
After the wiggle room they went back to the room for snack time and art. She went right to her seat and waited for her tray and snack and cup. She's made good progress in the last few months. I don't know if it's just that class is so much better for her than the Thursday class (younger kids and one little girl who is always up.in.her.bizness.annoying) but she seemed happier.
In general she seam's to have moved past the point where she was hitting herself a lot a few weeks ago. Fingers crossed we can figure out what her trigger's are so we can reduce them in the future.
If you would like to help with my fundraising for Team Avery - Don't Stop Believing please do so if you can! the website will take any amount for donations. I am hoping to get to my minimum ASAP so I can get my bib for Chicago ASAP because I'm so scared it will sell out. Thank you for any support!
Thursday, January 13, 2011
Thursday Triumphs
Sometimes I focus on the running part of my life. More so the will to get back to running. A big part of my life of course is my children. My oldest was declared almost 2 years ago as having a general developmental delay. So she went to Early Childhood preschool and now she's a rock star. A little narc but she's a rock star in class and we've been told she'll be in regular classes come next fall. Our youngest has Autism, recently diagnosed in September.
Six months ago we had no idea how she would adapt to going to a Mom's morning out program at a local church. She was diagnosed the day after she started "school". In fact she struggled A LOT at the beginning. I wasthisclose to pulling her from the class because the stress of not knowing how she was, was really hurting me. For the last month or so almost all the reports from when I pick her up are good. A great blessing because I knew she needed to be with other kids her own age, and learn to play with them. Well she was around the other kids but had yet to learn to play with them. If any other child came into her area she would have a meltdown. I've been hearing these are few and far between these days. She's picked up the routines finally of when it's time for circle time, wiggle time (free play), and this past Monday she actually "allowed" another little kid to play with the same toys she was playing with. Now it might seem like no big deal to a parent with a kid who doesn't have Autism but it was a big deal for her.
The most important thing for her is to have a strict schedule. I feel that almost every day we have a routine down. It's either therapy & school or just therapy during the week. Her sister goes to school in the afternoon. The two weeks they had off for the holidays were a doozie at home. Her nap schedule went off kilter and it's still up in the air. If she takes a late nap, it is HELL to wake her up and get her to eat dinner and play for a bit then go back to bed. I know she needs that nap. The last few days I've been experimenting with letting her hang out in her crib for an hour or so and if she's not asleep I take her out and we don't go through the struggles we went through the last few weeks late in the afternoon. If she doesn't nap, she hangs out on my lap or the couch, with her little butt up in the air (you know how little one's sleep), a blankie with her and trying to cover herself up with the pillows from the couch. So it's still a "do we let her give up her nap or does she really still need them?" type of thing.
So some of her triumphs in the last few weeks are:
* eating with a fork.
* motioning to get up in her booster seat
* helping with letting herself down from her booster seat
* inferring that she is done with her meal by handing us her plate and fork (if we don't catch her, it gets flipped to the floor)
* playing with others including her sister:
Six months ago we had no idea how she would adapt to going to a Mom's morning out program at a local church. She was diagnosed the day after she started "school". In fact she struggled A LOT at the beginning. I wasthisclose to pulling her from the class because the stress of not knowing how she was, was really hurting me. For the last month or so almost all the reports from when I pick her up are good. A great blessing because I knew she needed to be with other kids her own age, and learn to play with them. Well she was around the other kids but had yet to learn to play with them. If any other child came into her area she would have a meltdown. I've been hearing these are few and far between these days. She's picked up the routines finally of when it's time for circle time, wiggle time (free play), and this past Monday she actually "allowed" another little kid to play with the same toys she was playing with. Now it might seem like no big deal to a parent with a kid who doesn't have Autism but it was a big deal for her.
The most important thing for her is to have a strict schedule. I feel that almost every day we have a routine down. It's either therapy & school or just therapy during the week. Her sister goes to school in the afternoon. The two weeks they had off for the holidays were a doozie at home. Her nap schedule went off kilter and it's still up in the air. If she takes a late nap, it is HELL to wake her up and get her to eat dinner and play for a bit then go back to bed. I know she needs that nap. The last few days I've been experimenting with letting her hang out in her crib for an hour or so and if she's not asleep I take her out and we don't go through the struggles we went through the last few weeks late in the afternoon. If she doesn't nap, she hangs out on my lap or the couch, with her little butt up in the air (you know how little one's sleep), a blankie with her and trying to cover herself up with the pillows from the couch. So it's still a "do we let her give up her nap or does she really still need them?" type of thing.
So some of her triumphs in the last few weeks are:
* eating with a fork.
* motioning to get up in her booster seat
* helping with letting herself down from her booster seat
* inferring that she is done with her meal by handing us her plate and fork (if we don't catch her, it gets flipped to the floor)
* she's engaging with more eye contact with her therapists
* she's following more simple directions from her therapists
* saying more words for her therapists spontaneously, and making more sounds that are trying to sound like words. * playing with others including her sister:
Although my friend Kris says "look at Avery she's holding on to Jessie and Woody like, don't you dare touch them!" lol. True she does look like she is. They were quiet and that's what brought me into the room and this is what I saw.
The sisters playing together is a big deal. The tall and short one as we first started calling them when the youngest arrived have had a rough time of it. The tall one has always played well independently. Avery will play by herself as well. Well it's become more play in the last few months based on mimicking other actions that she seeing. She loves Jessie and Woody from Toy Story. I have 3 Jessie dolls in my house right now. Not a day goes by that there isn't a fight over that darn doll.
What I've been noticing in the last few weeks is the playing together they have going on. Paige is pushing herself into Avery's world by tickling her, making her laugh and hugging her. It's wonderful when Avery is accepting. Sometimes she is and sometimes she's basically wants to be left alone. Yesterday was one of those moments when Paige was let into Avery's world and they were both giggling.
She's making improvements, and while they may not be leaps and bounds they are indeed little triumphs for her.
Sunday, November 28, 2010
It is what it is.
I couldn't think of anything better than that to describe our day away from home.
My husband's brother and his family live near the Indiana/Ohio border. My sister in law and I had planned since last year to set up a day for us to visit and to do a Polar Express Train adventure with their four boys and our two girls. Authentic vintage steam engine train, waiters handing out hot chocolate, a conductor punching the golden ticket and of course a visit with Santa along with the souvenir silver bell. Sounds wonderful doesn't it?
For us to do this trip it was a 4.5 hour trip from our home to theirs. That actually wasn't bad kid wise. Avery didn't really start to melt down from being trapped in the car seat for so long until about a hour out from their house. By this time I was getting uncomfortable as well for sitting so long.
The day progressed and the kids played with their cousins. Avery tried to swallow something that looked like a bingo chip, then she gave Jessie the Cowgirl a swirly in the toilet when nobody was looking. She wasn't in her own element so things were off to begin with. Then factor in no nap. THEN factor in that she passed out in the truck as soon as we left to go to dinner. THEN factor in that after only a 40 minute nap that she was really, really enjoying we had to wake her up to go into a very crowded restaurant it results in a complete an utter meltdown of epic proportions. I ran out to the truck to get another sippy cup of her milk because the $6 Amy's gluten/casein free pizza we made for her and brought with us was not that enticing to her. As I was rushing back in I could hear her screaming. :( My husband brought her outside to me because she was inconsolable and people were staring.
People were staring. I knew that when I walked out of the restaurant and all the older patrons kept looking at us. I didn't really care if they were staring. I didn't get a chance to calm her down. To give her what she really wanted. I just took her and said, "Fine we'll eat in the car." So as I sat in the car crying, (which coincidentally she stopped crying) waiting for my husband to come out with our food I started to contemplate the rest of the night. I knew it was not going to include Avery seeing Santa on the train. If my husband couldn't deal with the stares of his old town folk then he wouldn't be able to deal with her on a train if she was inconsolable there. I also knew in my heart that it would be cruel to put her on the train and not know if she would enjoy it with lot's of strangers and bright lights. Then of course if she was in total meltdown mode on the train than we would have been those asshole parents that people snicker about without knowing our own reality.
I stayed with Avery in our truck watching Toy Story 1 & 2 on the IPad while the rest of the family went on the train. I could hear the lady over the loudspeaker talking about boarding the train. I could hear the chug chug chug of the train as it pulled out of the station. From my own point of view the train on the outside looked beautiful. As I sat in the truck with Avery I cried and cried. This will be the first of many things we have to walk away from because of Autism. I thought how unfair it was to her that she was missing out on this experience and probably many more like it because of Autism. How unfair it was to Paige as well that her and her little sissy weren't going to be sharing some of the same memories. Paige doesn't understand just yet that Avery is different. She knows she doesn't have her words but being only four years old she won't fully feel the impact for a few years.
My oldest Paige got to enjoy it with her Dada and her cousins and though I tossed him the camera on his way out of the truck and told him to take lot's of pictures I didn't get many. He even finally admitted he sucks ass at taking pictures. I can show you the pictures of the ceiling in the depot, or the pictures of Uncle Matt with his eye's closed (which I learned is an inside joke between my husband and his brother) but I would rather show you the pictures of some really cute little nephews and my little girl.
My husband's brother and his family live near the Indiana/Ohio border. My sister in law and I had planned since last year to set up a day for us to visit and to do a Polar Express Train adventure with their four boys and our two girls. Authentic vintage steam engine train, waiters handing out hot chocolate, a conductor punching the golden ticket and of course a visit with Santa along with the souvenir silver bell. Sounds wonderful doesn't it?
For us to do this trip it was a 4.5 hour trip from our home to theirs. That actually wasn't bad kid wise. Avery didn't really start to melt down from being trapped in the car seat for so long until about a hour out from their house. By this time I was getting uncomfortable as well for sitting so long.
The day progressed and the kids played with their cousins. Avery tried to swallow something that looked like a bingo chip, then she gave Jessie the Cowgirl a swirly in the toilet when nobody was looking. She wasn't in her own element so things were off to begin with. Then factor in no nap. THEN factor in that she passed out in the truck as soon as we left to go to dinner. THEN factor in that after only a 40 minute nap that she was really, really enjoying we had to wake her up to go into a very crowded restaurant it results in a complete an utter meltdown of epic proportions. I ran out to the truck to get another sippy cup of her milk because the $6 Amy's gluten/casein free pizza we made for her and brought with us was not that enticing to her. As I was rushing back in I could hear her screaming. :( My husband brought her outside to me because she was inconsolable and people were staring.
People were staring. I knew that when I walked out of the restaurant and all the older patrons kept looking at us. I didn't really care if they were staring. I didn't get a chance to calm her down. To give her what she really wanted. I just took her and said, "Fine we'll eat in the car." So as I sat in the car crying, (which coincidentally she stopped crying) waiting for my husband to come out with our food I started to contemplate the rest of the night. I knew it was not going to include Avery seeing Santa on the train. If my husband couldn't deal with the stares of his old town folk then he wouldn't be able to deal with her on a train if she was inconsolable there. I also knew in my heart that it would be cruel to put her on the train and not know if she would enjoy it with lot's of strangers and bright lights. Then of course if she was in total meltdown mode on the train than we would have been those asshole parents that people snicker about without knowing our own reality.
I stayed with Avery in our truck watching Toy Story 1 & 2 on the IPad while the rest of the family went on the train. I could hear the lady over the loudspeaker talking about boarding the train. I could hear the chug chug chug of the train as it pulled out of the station. From my own point of view the train on the outside looked beautiful. As I sat in the truck with Avery I cried and cried. This will be the first of many things we have to walk away from because of Autism. I thought how unfair it was to her that she was missing out on this experience and probably many more like it because of Autism. How unfair it was to Paige as well that her and her little sissy weren't going to be sharing some of the same memories. Paige doesn't understand just yet that Avery is different. She knows she doesn't have her words but being only four years old she won't fully feel the impact for a few years.
My oldest Paige got to enjoy it with her Dada and her cousins and though I tossed him the camera on his way out of the truck and told him to take lot's of pictures I didn't get many. He even finally admitted he sucks ass at taking pictures. I can show you the pictures of the ceiling in the depot, or the pictures of Uncle Matt with his eye's closed (which I learned is an inside joke between my husband and his brother) but I would rather show you the pictures of some really cute little nephews and my little girl.
Trying to get 5 kids to stand still and look at the camera is insane I think.
I think the nephew on the end is trying to eat that candy cane.
Santa and Paige
*for the price of the ticket, umm Santa should have had a real ass beard and not looked like he was 40. LOL
She loved it, she loved her little silver bell. My husband and her also bought Avery her own silver bell ornament for our tree. Maybe when she's older she'll understand what happened on this trip to see Santa and maybe she won't ever understand it. It was clear to me though. It is our new reality. We will have to cancel on things at the last minute if Avery is having a bad day. We'll have to pass up invites or certain activities because we won't know how Avery will be. We'll have to deal with the stares from people who won't know why our kid is having a melt down over waiting or whatever is pissing her off that day.
Instead of me getting to say FUCK YOU AUTISM (which I want to do at the top of my lungs sometimes.)
I'll just say It is what it is for now.
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