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
Wednesday, February 23, 2011
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!
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