One of the stereotypes of people with autism is that they are very rigid in their schedules and that routines are a big source of comfort. This is true for T to some extent, but most of the time he's a pretty easy-going guy. But yesterday I inadvertantly threw him a curve ball, and I learned my lesson!
We had a lovely afternoon shopping at a local mall - new to us both, so there was lots to explore. He's usually "on edge" (as I describe it) in situations like this: pretty stable, but very active with lots of wandering, galloping, vocalizing & flapping of hands. I try not to test him or thwart him too much in these situations. We can have a very nice time if I follow his lead and gently direct him when necessary. I'm used to this and really, I don't even see other people staring anymore. Most of the time, people get that he's different and are really nice about it, and that is lovely. I've found this to be especially true in our new city.
So after about 2 hours of meandering - and he was great, stayed with me or at least nearby - we decided it was time for daddy to meet us at Fancy-ish Chain Restaurant. Rob packed his dinner at home (what a gem of a guy) and we were to get a table. In normal, everyday circumstances for typical folks, this is not a big deal. I just didn't think about the fact that we'd be sitting down at a restaurant table without his dinner immediately available.
We sat down, and T reached for the backpack. Immediately, I knew this could be cause for trouble. Nope, I don't have your dinner. Daddy is bringing it. So T gets agitated and leans further over to get backpack. I show him there is no dinner in there. Daddy is bringing it. Oh geez, he's escalating. T is surely thinking "We're at a restaurant, and when we do that, Mommy always has the blue lunchbox with my dinner...only this time, she doesn't! That's FRUSTRATING and I'm confused! Why won't she give me my food???" and the crying and screaming start. Nothing to do but take him out and let him scream it out outside of Fancy-ish Chain Restaurant. Thankfully, within about 2 minutes, Daddy saves the day by arriving. Hooray Daddy! So, with his face all splotchy from crying but with renewed calm, we go back into the restaurant - and all is perfect for the rest of the dinner. All is well because he now has his dinner in the appropriate manner.
Lesson for Mommy: don't go a-changing the restaurant routine! I got it.
Saturday, August 04, 2007
Wednesday, August 01, 2007
Night-night, Norma
Today I spoke with a friend on the phone who has valiently fought stage 4 breast cancer for nearly 4 years. Over time, the cancer had spread to her bones and her liver, and I learned today that it now is apparent that her fight will soon be over. She has been T's craniosacral therapist while we lived in Small College Town, and as many therapists do, ended up helping all of us and had become very much an integral part of our lives. She even took voice lessons from me, so the relationship was mutually helpful and beneficial. She is one of T's favorite people, and he mentions her often, quite out of the blue.
As I spoke with her today and thanked her for being in our lives and for everything she had done for us, she weakly said "Now, don't you ever say goodbye to me - just say goodnight." I did - and added "Till we meet again", and promised to call again soon. When I was off the phone, I told T that I was just talking with Norma. He looked at me, smiled, and said "Night-night, Norma."
So, night-night, Norma. And if this is indeed your time, may you be in the arms of the angels.
As I spoke with her today and thanked her for being in our lives and for everything she had done for us, she weakly said "Now, don't you ever say goodbye to me - just say goodnight." I did - and added "Till we meet again", and promised to call again soon. When I was off the phone, I told T that I was just talking with Norma. He looked at me, smiled, and said "Night-night, Norma."
So, night-night, Norma. And if this is indeed your time, may you be in the arms of the angels.
Look where I found him
He's always been fascinated by the clothes drier (it spins clothes, vibrates, has many buttons to push...) but yesterday, they became one. Good thing it's a sturdy machine! (And it's a good thing the On button is outside and above, where he can't reach it!) Monday, July 30, 2007
We pet sharks today!
I took T to our city zoo today, since things have calmed down a bit with the unpacking and phone calls and all the errands that go along with setting up a new house. He had a super time! We only stayed for about two hours...one of the beautiful things about being members of our city's zoo is that you can go for two hours and leave when you've had enough, knowing that you can come back the next day for more! Since it was a weekday, it wasn't as crowded as a recent Saturday was (major tough time at the zoo that day) and he was a happy guy. The new Oceans exhibit was actually easy to get into today, and the main attraction of that is this awesome shallow pool where little sharks swim around and you can reach in and, with two fingers, pet a shark! WOW! Well, anything to do with water is a-okay with T, but what was really cool was seeing how much he watched the sharks go by, and how excited he was when he actually go to pet one. He jumped and smiled and gave a little whoop of excitement - just like every other kid (and adult, I must add) did!!!
The penguins, dolphins and polar bears were sources of great entertainment, too. They were all visible from the outdoors and from a viewing area inside, where you can see them swim underwater. We spent an hour just doing that.
On the dietary side, I made yogurt from scratch yesterday (actually, Saturday and Sunday) and gave Thomas his first taste of dairy product in 6 months. Just 1/8 tsp to start - it is supposed to be very potent with good probiotics, and can be overwhelming for healing guts at first. And it was - we had a looser stool this afternoon than we've had in a few weeks, so I'll keep my eye on it. It is made from cow's milk, so if this doesn't agree with him, we'll try goat milk yogurt.
Saturday, July 28, 2007
Six!
Monday was T's 6th birthday! He really is a big boy now - and getting bigger all the time. A happy time was had last weekend with three grandparents, two cousins and an aunt & uncle coming to help celebrate. It was fun to have the house full - and to see our nephews playing on the new playset we got for T. He takes his time with new playground or swingset-type activities, and seeing his cousins dive toward this playset and have such a good time on it was good inspiration for him - we now uses the swing and can climb up the slide and slide down. No, he's not using the ladder or ramp yet, but he will - and we got this for the long haul for him. His first OT (whom we called for guidance when shopping for the playset) said that he may be using this for several years longer than a typical boy; that even when he comes home from school as a teenager, he may need to swing hard for a while to get out his energy from the day, so buy something that will last and will hold up! So we did - and it was great to see it being used by all three boys (and their parents as well!) I think the playset was happy, too.
No birthday cake for him this year - just one of his muffins made with nut flour with a candle stuck in it! He smiled at the lit candle, and even tried to blow it out this year. Very cute. He sang a few lines from "Happy Birthday", but no one else was allowed to - it's still a touchy song for him - he still covers his ears and sometimes shrieks when other people sing it. So, we just said "Happy birthday" to him, and it was fine.
He is getting more and more comfortable in our new house all the time. This week he has discovered the pool table downstairs which came with the house. He loves rolling the balls in to the corner pockets and watching them roll down - very entertaining! He smiles and laughs and has a great time. Not every kid has a pool table in his playroom! I'm glad he's warming up to the basement - all his toys are down there, and that is where his Verbal Behavior home program will be set up until a space opens at the school.
Ah, Verbal Behavior! We've had to take a two-month hiatus from this wonderful therapy - due to the move and vacations, etc. - but we'll start back up in a week. I am eagerly anticipating the return of VB to his schedule - it's been so beneficial for him, and frankly, it will be nice to have a few hours that I'm not solely responsible for his entertainment and education. It's been driving me nuts this past month - unpacking, organizing, all the stuff that comes along with setting up a new house - all the while knowing that he is just sitting in the family room spinning his toy windmill or similar toy, idle, idle, idle...but what can I do? I know he's happier when actively engaged - and he's been very on-edge at times because he's bored and gotten into a zone where he's spent so much time in his own world that it's hard to break him out of it - but again, there's only so much I can do. I keep telling myself that this month won't kill him...it may set him back from where he could have been, but again, no one could do VB this month, period. And I certainly couldn't keep up with it with everything else I've been doing, and I keep telling myself that it's summer vacation for him, for crying out loud. The pressure I feel...the pressure I put on myself...my biggest struggle.
So, T starts VB 1/2 day through a private school in a week, and kindergarten the other 1/2 day in the public schools the following week! Hooray.
And Rob & I are the parents of a six year old boy. A very wonderful six year old boy! Happy birthday, T.
No birthday cake for him this year - just one of his muffins made with nut flour with a candle stuck in it! He smiled at the lit candle, and even tried to blow it out this year. Very cute. He sang a few lines from "Happy Birthday", but no one else was allowed to - it's still a touchy song for him - he still covers his ears and sometimes shrieks when other people sing it. So, we just said "Happy birthday" to him, and it was fine.
He is getting more and more comfortable in our new house all the time. This week he has discovered the pool table downstairs which came with the house. He loves rolling the balls in to the corner pockets and watching them roll down - very entertaining! He smiles and laughs and has a great time. Not every kid has a pool table in his playroom! I'm glad he's warming up to the basement - all his toys are down there, and that is where his Verbal Behavior home program will be set up until a space opens at the school.
Ah, Verbal Behavior! We've had to take a two-month hiatus from this wonderful therapy - due to the move and vacations, etc. - but we'll start back up in a week. I am eagerly anticipating the return of VB to his schedule - it's been so beneficial for him, and frankly, it will be nice to have a few hours that I'm not solely responsible for his entertainment and education. It's been driving me nuts this past month - unpacking, organizing, all the stuff that comes along with setting up a new house - all the while knowing that he is just sitting in the family room spinning his toy windmill or similar toy, idle, idle, idle...but what can I do? I know he's happier when actively engaged - and he's been very on-edge at times because he's bored and gotten into a zone where he's spent so much time in his own world that it's hard to break him out of it - but again, there's only so much I can do. I keep telling myself that this month won't kill him...it may set him back from where he could have been, but again, no one could do VB this month, period. And I certainly couldn't keep up with it with everything else I've been doing, and I keep telling myself that it's summer vacation for him, for crying out loud. The pressure I feel...the pressure I put on myself...my biggest struggle.
So, T starts VB 1/2 day through a private school in a week, and kindergarten the other 1/2 day in the public schools the following week! Hooray.
And Rob & I are the parents of a six year old boy. A very wonderful six year old boy! Happy birthday, T.
Sunday, July 08, 2007
Good news!
We won the insurance battle! Turns out that our home state has an Autism Insurance Mandate which kicked in for T's speech and OT - every last session of it from January-April. This is a HUGE-O relief, because by the time we were billed for all those sessions, we owed the hospital over $5,000.00. That is a lot of money. We also got a check for a compounded medicine which they weren't going to cover, but after I called and called and got bounced around to different people each time, each with a different answer (are compounded prescriptions covered? yes or no?), lo and behold, a check for the prescription arrived a few days ago. So what the heck - I'm not earning money right now, but I've just saved us a bunch of it with all my phone calls.
Thing is that no one at the hospital, therapy clinic, or insurance company knew about the state mandate. Our pediatrician didn't know about it. I just happened to hear about it at a meeting I attended several months ago. I forgot about it until about a month ago when I came across the notes I took from that meeting. I bought it up with the insurance company, and suddenly their whole tone with me changed. So here we are, and I'm feeling quite pleased with myself...but also wondering - yet again - about all the families out there that don't know about this. I have this vision...maybe it's my new calling...of having some sort of a guidance service for families with a child newly diagnosed with autism. There is so much information out there, and you are expected to be an expert immediately on every last bit of it...what if there was an organized, easily accessable group/company/organization that could be immediately dispatched to these families to help them navigate all this?
Yeah, I'll do all this in my spare time. Well, who knows?
The other good news is that we are settling into our new house in our new city nicely. T has actually been a real trooper - slept through the night on the very first night and every night since!
I am going nuts though, knowing that we can't start up his Verbal Behavior program until early August due to vacations and other conflicts, and school doesn't start until mid-August. So he spends lots of time just entertaining himself, which usually means rubbing his fingers together and grunting or saying "Uck, uck, uck...", or spinning a toy, or wandering around upstairs, playing with the toilet seats or our ceiling fan. It is a lot of work, unpacking our belongings and finding a new home for everything...and my old friend Motherly Guilt has settled in very well, worrying about all this un-engaged time he has while I'm working on the house. I seem to recall a similar post about this around spring break time, so this is nothing new, but still very real. But we've already installed a cool trampoline in the backyard, and just yesterday purchased a wooden swing/play set for him, which is sturdy and big enough to grow with him as the years go on. I'm looking forward to it being installed in a few days! I mean, I swing back & forth from worrying about all this down time and realizing that it is summer, after all, and every kid deserves some down time. So this will be Mom & T month, which will be good. We're almost done with all the boxes and unpacking, then we can at least go find a playground somewhere nearby.
In the meantime, I'm going to enjoy my victory with the insurance company. I also want to go see "Sicko" really soon!
Thing is that no one at the hospital, therapy clinic, or insurance company knew about the state mandate. Our pediatrician didn't know about it. I just happened to hear about it at a meeting I attended several months ago. I forgot about it until about a month ago when I came across the notes I took from that meeting. I bought it up with the insurance company, and suddenly their whole tone with me changed. So here we are, and I'm feeling quite pleased with myself...but also wondering - yet again - about all the families out there that don't know about this. I have this vision...maybe it's my new calling...of having some sort of a guidance service for families with a child newly diagnosed with autism. There is so much information out there, and you are expected to be an expert immediately on every last bit of it...what if there was an organized, easily accessable group/company/organization that could be immediately dispatched to these families to help them navigate all this?
Yeah, I'll do all this in my spare time. Well, who knows?
The other good news is that we are settling into our new house in our new city nicely. T has actually been a real trooper - slept through the night on the very first night and every night since!
I am going nuts though, knowing that we can't start up his Verbal Behavior program until early August due to vacations and other conflicts, and school doesn't start until mid-August. So he spends lots of time just entertaining himself, which usually means rubbing his fingers together and grunting or saying "Uck, uck, uck...", or spinning a toy, or wandering around upstairs, playing with the toilet seats or our ceiling fan. It is a lot of work, unpacking our belongings and finding a new home for everything...and my old friend Motherly Guilt has settled in very well, worrying about all this un-engaged time he has while I'm working on the house. I seem to recall a similar post about this around spring break time, so this is nothing new, but still very real. But we've already installed a cool trampoline in the backyard, and just yesterday purchased a wooden swing/play set for him, which is sturdy and big enough to grow with him as the years go on. I'm looking forward to it being installed in a few days! I mean, I swing back & forth from worrying about all this down time and realizing that it is summer, after all, and every kid deserves some down time. So this will be Mom & T month, which will be good. We're almost done with all the boxes and unpacking, then we can at least go find a playground somewhere nearby.
In the meantime, I'm going to enjoy my victory with the insurance company. I also want to go see "Sicko" really soon!
Friday, June 15, 2007
Insurance
We are thoroughly immersed in the world of moving - packing, sorting, panic-ing - all the fun stuff that goes along with upheaving your life and saying goodbye to lovely people. T is very interested in the change in our garage - no cars but lots and lots of boxes! It's an endless source of fascination for him, and I'm glad that we haven't run into too much anxiety on his part - yet!
News on the insurance front: our health insurance company has denied coverage for T's speech and occupational therapies. Their reasoning: these services are considered "educational" since he never had these skills. They only cover "rehabilitative" services - so if he had speech, then lost it due to an injury or illness, speech & OT would be covered. "So he's just supposed to stay non-verbal and unable to dress or care for himself??" I asked. It's simply not covered on our plan. Criminal.
The ray of hope is that I called in January (when we started him on this new insurance) and asked specifically if speech & OT were covered. I was told that it was. So we kept him going with weekly sessions at the local hospital's therapy clinic, only to get bills totalling (as of today) over $5,000.00 for his therapies. They have given us a one-time administrative exception form Jan-March because I was told that speech & OT were covered, but they won't cover April. That's just $1,007.00. JUST $1,007! Great scott. I called today to explain that they need to cover April as well. It is not right to expect us to pay over $1,000 out of pocket when they have acknowledged already that they were in the wrong. They weren't going to budge, but then I pulled out the trump card: Indiana has an Autism Insurance Mandate which requires treatments for autism to be covered. What they are doing may actually be illegal in Indiana. They are looking into this and will get back with us in 2-3 business days. Yes, and I have the Indiana Department of Insurance complaint form bookmarked and ready to fill out. I spoke with them last week and they said that it sounds highly suspect.
I'll keep this blog posted.
So many reactions, though...insurance didn't cover ESSENTIAL therapies for our son. He is one of a tsunami of children diagnosed with autism - what is going to happen next? Will insurance deny even more because it will simply be too expensive? What sort of premiums will we have to pay? Why didn't our therapy clinic know about the mandate? Why am I navigating this myself?
I knew I was going to have to learn to fight, really fight for him. I just didn't think I'd be doing so much fighting before he was 6!
News on the insurance front: our health insurance company has denied coverage for T's speech and occupational therapies. Their reasoning: these services are considered "educational" since he never had these skills. They only cover "rehabilitative" services - so if he had speech, then lost it due to an injury or illness, speech & OT would be covered. "So he's just supposed to stay non-verbal and unable to dress or care for himself??" I asked. It's simply not covered on our plan. Criminal.
The ray of hope is that I called in January (when we started him on this new insurance) and asked specifically if speech & OT were covered. I was told that it was. So we kept him going with weekly sessions at the local hospital's therapy clinic, only to get bills totalling (as of today) over $5,000.00 for his therapies. They have given us a one-time administrative exception form Jan-March because I was told that speech & OT were covered, but they won't cover April. That's just $1,007.00. JUST $1,007! Great scott. I called today to explain that they need to cover April as well. It is not right to expect us to pay over $1,000 out of pocket when they have acknowledged already that they were in the wrong. They weren't going to budge, but then I pulled out the trump card: Indiana has an Autism Insurance Mandate which requires treatments for autism to be covered. What they are doing may actually be illegal in Indiana. They are looking into this and will get back with us in 2-3 business days. Yes, and I have the Indiana Department of Insurance complaint form bookmarked and ready to fill out. I spoke with them last week and they said that it sounds highly suspect.
I'll keep this blog posted.
So many reactions, though...insurance didn't cover ESSENTIAL therapies for our son. He is one of a tsunami of children diagnosed with autism - what is going to happen next? Will insurance deny even more because it will simply be too expensive? What sort of premiums will we have to pay? Why didn't our therapy clinic know about the mandate? Why am I navigating this myself?
I knew I was going to have to learn to fight, really fight for him. I just didn't think I'd be doing so much fighting before he was 6!
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