Uh huh. That's right. That's what the little one was telling me as I was leaving the house today!
Cha Ching! Something is paying off!!
I was leaving to go to physical therapy for my foot & hip. I normally just scoot out and don't make a big deal of leaving because I know the little one will freak out. Today I just happened to say bye to her. To my surprise she said "byeeeeee!" I stopped and turned back to her and she was standing at our kitchen gate. She was saying "wait!" "wait!" "wait!" and POINTING at herself. POINTING!
See I am going to guess most Autie Mom's are like me. You almost always bring your sidekick wherever you go. So she was basically like "Um why aren't I going with you today Momma?" I had to say "No, just Momma today" and the baby sitter distracted her and I was able to leave without a huge meltdown. Then when I got home and let the baby sitter out she said, "bye bye!" to her as well.
What an awesome little girl!
Suck it Autism! You will NOT win!
Friday, July 29, 2011
Wednesday, July 27, 2011
When life hands you lemons you..
suck it up and move on.
A few weeks ago I posted about how we suffered a blow to Avery's therapy team here. She lost her OT she's had from the start, she maxed out of the therapy for our insurance and we lost the extra income that would have been helpful to pay for out of pocket therapy for the rest of the year.
I went to work ASAP and was able to find an interim therapy solution at Easters Seals for the time she had a break from the summer to fall session of school. So far so good. She seems to not have skipped a beat with the therapists much to my surprise. She has attended to activities with the therapist and even told her "all done" when done swinging which is huge. So for an interim band aid it seems to be working.
I want to get her on the waiting list for the therapy place I go to for my physical therapy for my foot.
While at therapy today I saw the PT who worked with my oldest for about a year while she was in our states Early Intervention program. She also worked with Avery for a short time from 5-9 months ( i think I'm fuzzy about that time period). She really adored our girls and they were great with her.
When I talked to her today she was really shocked to know that Avery has Autism. She kept saying, "but she gave me good eye contact", "she wasn't withdrawn", etc. I mean I am not sure how much she could have been clued into with her at that age because she really didn't start to show major signs until she was about 2 and the sensory issues didn't explode until she was in therapy. I mean there were small things to start with but nothing big during the first year. It's all the developmental milestone's in the second year that she didn't hit.
I saw a few issues the first year but did anyone see the big issues the first year?
Like when I told the DR who delivered her that she has Autism I kinda of felt bad telling her about Avery's situation. It's not like she did it to her or she could have noticed anything to cut it off at the pass. I mean it is what it is. She has Autism. In the grand scheme of things she's lucky. No physical health issues, she's not in a wheelchair, she doesn't have seizures. When she starts school again in a few weeks she'll be getting more services, more attention and God willing things will blossom for her.
I'm trying to keep things in perspective these days. No matter how I think our life sucks, I'm pretty sure someone else has it worse off and is envious or wistful of the life we have. I don't mean that in a cocky way either. When I have a moment and I talk to my BF and we are both having a bad day, and we both go "I wonder what it would be like to have "normal" kids" you know a life that does not revolve around a therapy schedule we remind ourselves of these things. I'm just counting my blessings. Which is something I sometimes forget to do and need to do more of.
A few weeks ago I posted about how we suffered a blow to Avery's therapy team here. She lost her OT she's had from the start, she maxed out of the therapy for our insurance and we lost the extra income that would have been helpful to pay for out of pocket therapy for the rest of the year.
I went to work ASAP and was able to find an interim therapy solution at Easters Seals for the time she had a break from the summer to fall session of school. So far so good. She seems to not have skipped a beat with the therapists much to my surprise. She has attended to activities with the therapist and even told her "all done" when done swinging which is huge. So for an interim band aid it seems to be working.
I want to get her on the waiting list for the therapy place I go to for my physical therapy for my foot.
While at therapy today I saw the PT who worked with my oldest for about a year while she was in our states Early Intervention program. She also worked with Avery for a short time from 5-9 months ( i think I'm fuzzy about that time period). She really adored our girls and they were great with her.
When I talked to her today she was really shocked to know that Avery has Autism. She kept saying, "but she gave me good eye contact", "she wasn't withdrawn", etc. I mean I am not sure how much she could have been clued into with her at that age because she really didn't start to show major signs until she was about 2 and the sensory issues didn't explode until she was in therapy. I mean there were small things to start with but nothing big during the first year. It's all the developmental milestone's in the second year that she didn't hit.
I saw a few issues the first year but did anyone see the big issues the first year?
Like when I told the DR who delivered her that she has Autism I kinda of felt bad telling her about Avery's situation. It's not like she did it to her or she could have noticed anything to cut it off at the pass. I mean it is what it is. She has Autism. In the grand scheme of things she's lucky. No physical health issues, she's not in a wheelchair, she doesn't have seizures. When she starts school again in a few weeks she'll be getting more services, more attention and God willing things will blossom for her.
I'm trying to keep things in perspective these days. No matter how I think our life sucks, I'm pretty sure someone else has it worse off and is envious or wistful of the life we have. I don't mean that in a cocky way either. When I have a moment and I talk to my BF and we are both having a bad day, and we both go "I wonder what it would be like to have "normal" kids" you know a life that does not revolve around a therapy schedule we remind ourselves of these things. I'm just counting my blessings. Which is something I sometimes forget to do and need to do more of.
Sunday, July 17, 2011
Do you tell strangers your child has Autism?
Like out of no reason than to explain their behavior?
I was out running errands with Avery this morning. Our first major stop was Walmart. She was doing pretty good today. She was being very vocal but happy. The cashier I had was pretty fast today (shocker). She was saying she had all the babies in her lane today and then corrected herself when she said Avery wasn't a baby. I said no not really but she doesn't really talk so it's like having a baby. She then was telling me about her 2 year old who was to receive speech therapy through our states Early Intervention program. I mentioned Avery had Autism and she said she thought her daughter had some mannerisms that alarmed her. She told me she was waiting for a speech therapist.
This is where I turned off just being a Mom of a kid with a Autism into the Mom who knows how to work the system. I then rattled off as fast as I could because of course a line was forming what she needs to do with our EI system. I told her she had to be on her case worker's ass like she owe's you money. No joke. Next tell her you want the diagnostic medical evaluation done. Just to get the ball rolling for that because there is a waiting list for these things. That she can get it scheduled for 6 months after she starts receiving services but it has to be done 90 days before their 3rd birthday when they age out. I gave her the name of the group we took Avery to for her evaluation. I wished her the best of luck and we then left the store.
Two more stores and by the last one Avery was at her limit and it was time for lunch. She did well for herself and was a happy camper when we got home and ate lunch.
I told my husband about my experience at Walmart this morning and I mentioned I should just get cards made up with the basic information for a family starting EI or starting their therapy journey. It would have to be an 8x10 card because of all the information you need to know though.
My experience this morning reminded me of two Mom's I met at the Autism One Conference in May. The first Mom was the mother who was of Asian descent who had a hard time expressing herself and didn't know where to get help for her child. The second Mom this reminded me of was of another mother who's son had Autism and she said that she's always telling people at her kids school that he has Autism. She said she didn't want to feel alone and needed to know who was like her.
I think I want to help Mom's like the first one I described because if you don't know where to start it's a hard road and it's only better if you can get help from others. I feel like the second Mother because I'm not afraid to tell people my child has Autism. There are more and more kids with Autism today than when I was growing up and someone almost always knows a family with a kid on the spectrum but sometimes you meet that Mom who's not sure if her child does or does not and needs the help in finding out.
There is nothing wrong with saying to others my child has Autism. You never know if the next person you tell will be someone who needs help or just a push in the right direction in getting help not just for their child but even for themselves.
I was out running errands with Avery this morning. Our first major stop was Walmart. She was doing pretty good today. She was being very vocal but happy. The cashier I had was pretty fast today (shocker). She was saying she had all the babies in her lane today and then corrected herself when she said Avery wasn't a baby. I said no not really but she doesn't really talk so it's like having a baby. She then was telling me about her 2 year old who was to receive speech therapy through our states Early Intervention program. I mentioned Avery had Autism and she said she thought her daughter had some mannerisms that alarmed her. She told me she was waiting for a speech therapist.
This is where I turned off just being a Mom of a kid with a Autism into the Mom who knows how to work the system. I then rattled off as fast as I could because of course a line was forming what she needs to do with our EI system. I told her she had to be on her case worker's ass like she owe's you money. No joke. Next tell her you want the diagnostic medical evaluation done. Just to get the ball rolling for that because there is a waiting list for these things. That she can get it scheduled for 6 months after she starts receiving services but it has to be done 90 days before their 3rd birthday when they age out. I gave her the name of the group we took Avery to for her evaluation. I wished her the best of luck and we then left the store.
Two more stores and by the last one Avery was at her limit and it was time for lunch. She did well for herself and was a happy camper when we got home and ate lunch.
I told my husband about my experience at Walmart this morning and I mentioned I should just get cards made up with the basic information for a family starting EI or starting their therapy journey. It would have to be an 8x10 card because of all the information you need to know though.
My experience this morning reminded me of two Mom's I met at the Autism One Conference in May. The first Mom was the mother who was of Asian descent who had a hard time expressing herself and didn't know where to get help for her child. The second Mom this reminded me of was of another mother who's son had Autism and she said that she's always telling people at her kids school that he has Autism. She said she didn't want to feel alone and needed to know who was like her.
I think I want to help Mom's like the first one I described because if you don't know where to start it's a hard road and it's only better if you can get help from others. I feel like the second Mother because I'm not afraid to tell people my child has Autism. There are more and more kids with Autism today than when I was growing up and someone almost always knows a family with a kid on the spectrum but sometimes you meet that Mom who's not sure if her child does or does not and needs the help in finding out.
There is nothing wrong with saying to others my child has Autism. You never know if the next person you tell will be someone who needs help or just a push in the right direction in getting help not just for their child but even for themselves.
Friday, July 15, 2011
I should probably post more than every 2 weeks..
Or ten days or so...
Sorta of an update. We had Avery set up with Easter Seals for OT for the break between the summer session of school and the fall start of the year. Her first appointment was canceled due to a sick OT so her next appointment won't be til next week which coincides on her last day of school for the summer session. If they cancel again then I might throw in the towel with Easter Seals. I just don't like to plan for something and rearrange the schedule for someone else who will be a short term solution for her.
The last day of school this week I got a great report from Avery's aide at school. It took her only 4 weeks to get into a groove and have a good day. Her aide wrote on the bottom that she won't be at school for the last two days (awesome) so I might not get a report home (awesome). So let's look that it took her 4 weeks to have 1 good day and then she's off for another 4 weeks before she starts in the fall. AWESOME. The little kid finally had a good day and then let's stop her schedule for a few weeks and hope she comes back roaring to go. Should be great.
She finally has stopped the constant head hitting. She seems to be making a turn around. I would hate to see it go to hell in the next few weeks with all the changes.
This morning I watched her make a concentrated effort to actually listen to my directions because she knows certain house rules. In our house we do not allow toys or blankies in the kitchen or the table. It has worked very well for us in our house with our oldest and we have worked hard with Avery for her to get it. The table is for eating not for playing with your toys. So the kids know at the door threshold they are to leave their toys or blankie there. With our oldest she knows she leaves her "puppy" at the door. With Avery she knows she has to leave her blankie and her flamingo at the door. If you tell her to "drop them" she might fight you for a few seconds but she normally drops them.
In the last few days she has found a new love. A beach towel. It's a new texture for her to cuddle up with and she even sleeps with it. So this morning she was clutching it while I was getting her dressed for the day. She fussed as I tried to take it away from her after getting dressed. We have a simple routine. Get dressed and breakfast is next. Simple. So she knows the deal. As we walked to our kitchen I told her to drop them and she started fussing with me. I walked into the kitchen and stood at the sink. I turned to her and said "No leave the blankie at the door". She was standing there turning around, holding onto the "blankie". I told her "let's go and eat breakfast" and she turned around and dropped the towel! She knows. She knows what her responsibilities are even though she doesn't verbally say she knows.
I've heard her singing songs from movies this week as well. Ask her a question and the best answer that you'll get is "NO" but that's for everything. She'll react to movies and go, "Oh no!!" It's so quiet that you might only hear her if she is sitting with you. Expect her to say something when she gives you eye contact it won't exactly work. But what I need to teach her is to give her Daddy kisses. I finally got her to do it for me with puckering up for her all day long whenever she is in my face. Maybe I should leave him alone with the little one all day while the older one and I go to the movies or something so he can make silly faces all day with her?
Sorta of an update. We had Avery set up with Easter Seals for OT for the break between the summer session of school and the fall start of the year. Her first appointment was canceled due to a sick OT so her next appointment won't be til next week which coincides on her last day of school for the summer session. If they cancel again then I might throw in the towel with Easter Seals. I just don't like to plan for something and rearrange the schedule for someone else who will be a short term solution for her.
The last day of school this week I got a great report from Avery's aide at school. It took her only 4 weeks to get into a groove and have a good day. Her aide wrote on the bottom that she won't be at school for the last two days (awesome) so I might not get a report home (awesome). So let's look that it took her 4 weeks to have 1 good day and then she's off for another 4 weeks before she starts in the fall. AWESOME. The little kid finally had a good day and then let's stop her schedule for a few weeks and hope she comes back roaring to go. Should be great.
She finally has stopped the constant head hitting. She seems to be making a turn around. I would hate to see it go to hell in the next few weeks with all the changes.
This morning I watched her make a concentrated effort to actually listen to my directions because she knows certain house rules. In our house we do not allow toys or blankies in the kitchen or the table. It has worked very well for us in our house with our oldest and we have worked hard with Avery for her to get it. The table is for eating not for playing with your toys. So the kids know at the door threshold they are to leave their toys or blankie there. With our oldest she knows she leaves her "puppy" at the door. With Avery she knows she has to leave her blankie and her flamingo at the door. If you tell her to "drop them" she might fight you for a few seconds but she normally drops them.
In the last few days she has found a new love. A beach towel. It's a new texture for her to cuddle up with and she even sleeps with it. So this morning she was clutching it while I was getting her dressed for the day. She fussed as I tried to take it away from her after getting dressed. We have a simple routine. Get dressed and breakfast is next. Simple. So she knows the deal. As we walked to our kitchen I told her to drop them and she started fussing with me. I walked into the kitchen and stood at the sink. I turned to her and said "No leave the blankie at the door". She was standing there turning around, holding onto the "blankie". I told her "let's go and eat breakfast" and she turned around and dropped the towel! She knows. She knows what her responsibilities are even though she doesn't verbally say she knows.
I've heard her singing songs from movies this week as well. Ask her a question and the best answer that you'll get is "NO" but that's for everything. She'll react to movies and go, "Oh no!!" It's so quiet that you might only hear her if she is sitting with you. Expect her to say something when she gives you eye contact it won't exactly work. But what I need to teach her is to give her Daddy kisses. I finally got her to do it for me with puckering up for her all day long whenever she is in my face. Maybe I should leave him alone with the little one all day while the older one and I go to the movies or something so he can make silly faces all day with her?
Wednesday, July 6, 2011
The wonderful world of Autism and Insurance
Let me start out with a back history. A few weeks ago our daughters OT (occupational therapist) told us that she was leaving and moving out of state. Well that would have been nice to know a few weeks earlier when we were setting our plans for the summer. When I got the news then I was upset. And it wasn't because of the "oh fudge we have to find a new therapist" to me it was like our little girl was going to be loosing her best friend and she didn't even know it. She LOVED her therapist. LOVED. She knew exactly how her time was going to be when she was with her. She always lit up when she saw her and was always on her best behavior for her. She was the only OT she has had from the start until she started school.
Last week we had our appointment with her and it was suppose to be one of those to start transitioning to a new therapist time slot. As we left she said to us "see you next week!" Ok have a great weekend!
On Tuesday I got a call from the clinic telling me that our OT had to leave sooner than she thought and she quit. WTFFF <--- that means What The Fucking Freaking Fuck. Sorry for the words but that's exactly how I felt. As the chic on the other side of the phone is trying to discuss with me getting another therapist in there sooner I am bawling on the phone. Bawling. FUCK. Poor Avery. OMG How is she going to react to this? No goodbye's nothing! WTF. The poor kid. I don't know what happened in our OT's life that this had to be so sudden and she was wonderful for the whole time we had dealt with her so I can't be pissed at her for the sudden departure ( I mean I can be but I just can't) I am just very disappointed that Avery will never get that closure (even though she wouldn't know what was really going on) but this will be one of the first time's someone she adores just leaves with no explanation.
The backlash to loosing her therapist is that kids like her deal with changes not during the change but sometimes process it later and react to it later. So we finally had a weekend with not a lot of head hitting and physical outbursts and now I can expect a whole lot more of this with this change.
Then today was the cherry on the sundae of the WTFFF.
I had just finished with my physical therapy at the rehab center for my foot problem. I got a call from the school to pick her up because she wasn't feeling well and some green gunk coming out of her eyes and nose. Awesome. So I managed to get her into the pediatrician right away and get her checked out while the babysitter was with my oldest.
When I was gone the clinic called and asked that I call them back. Ok I call back and before we can schedule with the new therapist I had to talk to the benefits coordinator because they realized or found out that we had maxed out our 60 therapy sessions for the year. omfg. Our insurance policy through my husbands work renewed in May so I thought hmm that's odd let's call the insurance company. When I talked to the customer service representative (first one I ever dealt with that was nice and sympathetic) she told me that our insurance is based on a calendar year January -December. So that whole May deal of renewing the plan was just to make sure everything was the same. wtfff. THEN the best part of this is when I asked about the Illinois Autism Insurance Coverage Law. I found out that my husbands company is a self funded insurance plan. Who guess what opted out of the Autism coverage on their policies. WTFFF. So we are now at the point where we have to pay out of pocket if we want to have outside OT services. To the tune of $500 a month. Because the clinic who apparently thinks everyone can just dole out $120 a week by guilt for their child does not believe in a sliding scale. By the end of the year it would cost us $3,000 out of pocket if we were to keep her at the clinic. Anybody else crying with me yet?
Obviously this was a big blow to us today. Disappointed with the company he works with. Disappointed with the clinic and their strictness. Just a big ol wtfff. Because this would not have been that big of an issue 2 months ago. We would have had the extra money. Since then, well since Thursday of last week we don't have my husbands second job to get the extra income. It was killing him and it became impossible for him to juggle the two jobs. So we made the decision for him to quit finally after 5.5 years. Sigh. Then this.
While I sat today and tried to figure out what to do, and if you are ever in this position just an FYI nobody knows how to help you when you ask. So start looking yourself! I was able to get her into a short term therapy program through our local Easter Seals for the break between the summer session of school and the fall. During this time I will be looking into a long term solution. There is a regular 1 year waiting list for OT services through Easter Seals. Why Easter Seals? Because they have a private pay plan that is half of what the clinic would charge. They are in town and it's short term and will get her a chance to get on the waiting list if we decide that we really like it there.
So I am not going to end this post on a negative note because while I can only dwell on the insurance crap we are dealing with now I need to focus on a positive or I will go nuts.
Avery got on the bus yesterday to go to school and as she got in her car seat and I waved good bye to her she waved back!! It has never happened before and when I started clapping I was so happy that she did that she started clapping back! Yay! Go Avery!!!
So there you have it. Insurance + Autism = Suck Ass and Avery is waving bye bye! Good and the bad. Once again I hate Autism.
Last week we had our appointment with her and it was suppose to be one of those to start transitioning to a new therapist time slot. As we left she said to us "see you next week!" Ok have a great weekend!
On Tuesday I got a call from the clinic telling me that our OT had to leave sooner than she thought and she quit. WTFFF <--- that means What The Fucking Freaking Fuck. Sorry for the words but that's exactly how I felt. As the chic on the other side of the phone is trying to discuss with me getting another therapist in there sooner I am bawling on the phone. Bawling. FUCK. Poor Avery. OMG How is she going to react to this? No goodbye's nothing! WTF. The poor kid. I don't know what happened in our OT's life that this had to be so sudden and she was wonderful for the whole time we had dealt with her so I can't be pissed at her for the sudden departure ( I mean I can be but I just can't) I am just very disappointed that Avery will never get that closure (even though she wouldn't know what was really going on) but this will be one of the first time's someone she adores just leaves with no explanation.
The backlash to loosing her therapist is that kids like her deal with changes not during the change but sometimes process it later and react to it later. So we finally had a weekend with not a lot of head hitting and physical outbursts and now I can expect a whole lot more of this with this change.
Then today was the cherry on the sundae of the WTFFF.
I had just finished with my physical therapy at the rehab center for my foot problem. I got a call from the school to pick her up because she wasn't feeling well and some green gunk coming out of her eyes and nose. Awesome. So I managed to get her into the pediatrician right away and get her checked out while the babysitter was with my oldest.
When I was gone the clinic called and asked that I call them back. Ok I call back and before we can schedule with the new therapist I had to talk to the benefits coordinator because they realized or found out that we had maxed out our 60 therapy sessions for the year. omfg. Our insurance policy through my husbands work renewed in May so I thought hmm that's odd let's call the insurance company. When I talked to the customer service representative (first one I ever dealt with that was nice and sympathetic) she told me that our insurance is based on a calendar year January -December. So that whole May deal of renewing the plan was just to make sure everything was the same. wtfff. THEN the best part of this is when I asked about the Illinois Autism Insurance Coverage Law. I found out that my husbands company is a self funded insurance plan. Who guess what opted out of the Autism coverage on their policies. WTFFF. So we are now at the point where we have to pay out of pocket if we want to have outside OT services. To the tune of $500 a month. Because the clinic who apparently thinks everyone can just dole out $120 a week by guilt for their child does not believe in a sliding scale. By the end of the year it would cost us $3,000 out of pocket if we were to keep her at the clinic. Anybody else crying with me yet?
Obviously this was a big blow to us today. Disappointed with the company he works with. Disappointed with the clinic and their strictness. Just a big ol wtfff. Because this would not have been that big of an issue 2 months ago. We would have had the extra money. Since then, well since Thursday of last week we don't have my husbands second job to get the extra income. It was killing him and it became impossible for him to juggle the two jobs. So we made the decision for him to quit finally after 5.5 years. Sigh. Then this.
While I sat today and tried to figure out what to do, and if you are ever in this position just an FYI nobody knows how to help you when you ask. So start looking yourself! I was able to get her into a short term therapy program through our local Easter Seals for the break between the summer session of school and the fall. During this time I will be looking into a long term solution. There is a regular 1 year waiting list for OT services through Easter Seals. Why Easter Seals? Because they have a private pay plan that is half of what the clinic would charge. They are in town and it's short term and will get her a chance to get on the waiting list if we decide that we really like it there.
So I am not going to end this post on a negative note because while I can only dwell on the insurance crap we are dealing with now I need to focus on a positive or I will go nuts.
Avery got on the bus yesterday to go to school and as she got in her car seat and I waved good bye to her she waved back!! It has never happened before and when I started clapping I was so happy that she did that she started clapping back! Yay! Go Avery!!!
So there you have it. Insurance + Autism = Suck Ass and Avery is waving bye bye! Good and the bad. Once again I hate Autism.
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