This weekend we had a wonderful treat. Kevin and Arianne, Donovan and Ethan came up to our house on Friday night, then we all left and went camping at Cloudland Canyon State Park on Saturday night. Much much fun was had.. it was Donovan and Ethan's first camping trip and they did AMAZING. We never have a bad time when we hang out with that bunch. We love you guys, thanks for being our friends.
Here's pics: http://www.flickr.com/photos/56083521@N00/sets/72157624121298620/
Manny is getting a little easier to take on these types of trips, although he's still exhausting and takes constant supervision because he wants nothing more than to escape and run down the street. Still, he has started to respond to us a little bit when we tell him to stay close. Its something, and I'm just happy that he's showing signs that he understands us. His inability to sleep carries over to camping, and he woke up around 3 AM.. which, coincidentally was about the time I went to bed. We just resign ourselves to the fact that we won't sleep when we go camping. Its the price we pay to do what we love.
This morning I went to meet Jake's special ed teacher and my cousin Amber, his speech teacher at Westside elementary to check out their Kindergarten program and meet the special education teacher there. They have a really nice program and really a very very nice school. Then, this afternoon I met the ladies again at Beaverdale and I was SUPER impressed. I met Ms. Nancy, the person who oversees the special autism class there. Amber, Micaela and I toured the school and then went back to Ms. Nancy's class. I was getting very excited about this school, which seems to be quite forward-thinking and I was really surprised to find such a place nestled way out in the middle of nowhere-East-Whitfield. Ms. Nancy began speaking to me privately and said "Well, I've only observed Jake for one day, but I don't think he's ready for kindergarten, and here's why..." My heart sank. There are really no other options for him other than repeating Pioneer headstart again, and I KNOW he's bored with that and needs more challenges. I thought she was saying that he wasn't ready for her program, but that's not what she meant at all. I think she was quelling my enthusiasm that Jake might be ready for going to the Kindergarten classroom for much of the day. She disagrees (which is fine, since I really have no idea what a kindergarten class looks like anyway). She thinks that Jake SHOULD come to her class, but with the expectancy that he is going to need a lot of help, and may spend much of his time working with her or her assistant. He needs to work on being able to sit still and concentrate for more than a few minutes at a time, among other things. The prospect being that this year be a "practice" year of kindergarten, with the expectation that he will repeat K again next year. I am happy with that.
I have only one concern about him going to a school that is so far away, and that is that if he rides the bus, it will come at some ungodly hour like 6 AM.. which will be hard. We can drive him, but the school is about a half hour away, and that can get tedious and very expensive. But honestly, as far as I can tell right now, transportation is the ONLY concern and that's just a matter of convenience and not worth giving up such an amazing opportunity for Jake. While Westside is really nice, I really think that Beaverdale is more specialized and exactly what Jake needs.
I will be going to Pioneer headstart for an arena meeting with about 10 people or so who seem to care a lot about my son at 7:30 on Wednesday morning. I will have both kids in tow, because childcare just isn't in the cards that day. I'll tell them YES to Beaverdale Elementary, and I'll sign a bunch of papers and hopefully someone will hold Manny for me for part of the time.
The frenzy of meetings to coordinate the next step in Jake's education has fallen at an interesting time. Sunday I went to the Chattanooga Market as a consumer (SO much fun!.. I had no idea what it felt like just to go and SHOP) and then realized that the big two-day "Beast Feast" is this weekend. Several acts that I want to see will be playing, and it is a great opportunity to vend and make some money. Despite the fact that I'm very understocked, I decided to take it on, and I RSVP'd. I sewed every spare second that I wasn't at school meetings today, and will continue to sneak in any time I can the rest of the week. Sam came and sewed for me today, and I've asked Sherlene to help me with some finishing work (Thank you guys.. SERIOUSLY.. THANK YOU!). This weekend will be a lot of long hours and hard work, but hopefully it will pay off. Next weekend is the Thingamifling! Oh I do love the beginning of summer.
We haven't even told Jake about the Thingamifling. His "actual" birthday is Sunday, which he will spend with Mom (thanks Mom!) while Steve comes up to the market with me. Even though I'm not touting "the fling" as his birthday party, I will probably get him a chocolate cake from Greenlife Grocery and make sure he gets a song and some candle blowing going on sometime during the fling.
Tomorrow marks the one year anniversary of the day that the nurse called me and told me that they found a tumor on Manny's brain. A lot has happened in a year. My mind has changed so much over the course of that year. I can't even describe how EVERYTHING has changed.. my children, my relationship with my husband, my relationship with everything. Things went down.. they went WAY down, but they're coming up again, in a wonderful way. Manny is due another MRI in June, according to the doctors, however.. I will probably postpone that until closer to his birthday. I might get criticism for that, however.. sometimes what we don't know doesn't hurt us, and so far my mommy gut has been pretty dead-on. I think we'll ride this wave of O.K.-ness through the summer unless something changes.
The 'fling will be our practice session this year. We hope to turn it into a benefit for NF1 research in the future, and with the help of some very special friends, I think it can happen. If you would like an invite or more information, just email me at bratsacksbaby@yahoo.com BAREFOOT NELLIE! YEEEHAWW!
Well Manny is finally asleep (he's trading waking up all night for staying up until midnight the past few days, which is actually slightly more desire able). I am going to follow him.
Monday, May 24, 2010
Wednesday, April 21, 2010
Update
So, its been a long while since I updated, so I'll do my best. Honestly I spend a lot of time on facebook, so most people just keep up with us there.
Jake is mostly over his difficult spell and, as usual, he has jumped forward in development. The reports from school are good. He's speaking more and answering questions more appropriately. He's been a joy to be around and to take on outings. A couple of weeks ago we went to the Keel Family Function over at cherokee farms in Lafayette. The weather was gorgeous, the music was wonderful, the kids had fun, and as an added bonus, it was a lucrative venture for my business. Jake and I spent the first night together just the two of us. It was fun and we fit in with the other vendors/carnies just fine. The second night Steve and Manny joined us. The second night wasn't so great since Jake puked all over the camper in the middle of the night due to too many hotdogs and soda pops. The third night my Mom kept the boys and Steve and I got to spend a night alone during the height of the festival. We met some great people and made a lot of new friends.
This past weekend was the Boxcar Pinion Memorial Bluegrass festival. For 4 years this yearly festival has been sort of a barometer for Jake's development, and well, he's doing great. He still does many things that are inappropriate for a child his age such as diving on people and touching others. He doesn't really play with the other children and gets anxious and needs to change venues often. He lets us know what he wants though, and often he wants to "go down see the music!" That makes my heart swell with pride. The first and second night he fell asleep on a rug under my easy-up declaring that he wanted to sleep outside so he could hear the music. He's my boy alright.
The last night of Boxcar was supposed to be another Mommy and Daddy date-night, however Manny got stung by a bee (he picks them up!) and I had to go pick him up and leave Steve to hang out with our friends. We've been blessed by meeting and/or getting-to-know-better some really awesome folks, Christie, August, Gwendal, Eric, Mike, Jim and all you amazing people that we've been hanging with. We've been especially blessed by our new friends Sara, Rick and Simon. They've come out to Keel and Boxcar as well as other outings with us and just seem like nice laid back folks. Its nice to have good friends with similar interests, goals and lifestyles.
Manny.. what can I say about Manny. He's really made very little improvement lately. In fact, he's a fussy, tantrumey mess. He still, of course, has no language. Lately I am seeing a bit more of a regression and its very worrisome. When he seems to forget skills I wonder if the tumor on his brain is growing or changing, or if he goes through a spell of worsening motor skills I wonder if the one on his spine is causing issues, however my gut tells me all that I need to know. Last night was another night of no-sleep and I laid beside him in bed listening to him squeal and make strange noises, I noticed him doing something I know all too well. He was squealing while at the same time making popping-clicking noises deep inside his mouth. This is the first time that I've heard him engage in vocal-stimming to this extent, but I've heard it all before (remember the stimming video I made of Jake?). He's simply regressing further into autism and its heartbreaking. While Jake was clingy and hated to be left with family or strangers, Manny is indifferent, and will go-to and stay with pretty much anyone without a fuss. He cuddles, but isn't particular as to who it is. It tears my heart completely out of my chest when his Dad sometimes says "Do you think that he loves us?" or "Do you think he misses us when we're gone?" I just don't know.
Last week Steve's parents took it upon themselves to call Atlanta Speech and hearing school, where Steve's brother went when he was little, and was in the first graduating class there. They wanted to take Manny for an assessment. Although I knew that there were no further tests that they could do for Manny, I was completely and utterly floored by this step and this show of love and understanding from his family. I was really afraid that they, especially Pops, thought that this was something new and exciting that would "open the door" as Pops put it, to bringing Manny out of his darkness. Steve traveled with them while I worked, and on the way down Pops said "I bet they'll put tubes in his ears and then he'll hear and start to talk." I guess this is what happened with Steve's brother. All of the same hearing and speech tests were repeated that I've done so far, and the specialist asked if we were doing OT, Babies can't wait, Headstart, etc. She was able to tell Steve's dad that Manny could hear, was most likely autistic with sensory processing and motor planning issues and that there was nothing more that could be done for him than we are already doing at this point. I think it was a good trip, even if it was hard on Steve's dad to hear from a professional what we'd been trying to tell him already.
Throughout the spring I've been working on my physical and mental health, trying to get over the anger and dispair and move on towards hope and acceptance. My mind is opening and realizing that no matter what happens, it will be OK. Even if Manny (or any of us really) doesn't survive as long as we would want him to, or be as successful as we would like for him to be, that he's here for a purpose and he's already taught me a lot. I have the best possible support team of family and friends and especially my husband, who puts up with me and loves me no matter how bad the "bad days" are.
I know that I'm lucky to have what we have with our boys when I see other children with much more serious conditions. A little girl came to Boxcar with her nurse this weekend who was born with a tumor larger than her head attached to her skull. She sleeps most of the time, doesn't feed herself or have many skills at all, has seizures and is strapped to a chair or carried by others. Her full-time nurse was so sweet, and spotted my children's issues instantly and was open and nice to talk to. Things may get worse for Manny, my (cursed) gut tells me that they will, but right now we're OK.
After Christmas I entered into a serious health overhaul, worked with a personal trainer and completely changed my diet. I won't be able to do the personal trainer any more but hoop-dance has come into my life just at the right time and taught me to enjoy my body, as well as daily metitation and DAILY study of music, something I've needed for years. Both the dog grooming and sewing business is picking up, and 2 weeks ago the Chattanooga Market started. I was completely overwhelmed with the number of friends and family who came down for opening day to support this cause that I so truly believe in and am proud to be a part of. Thank you everybody!
Thats really all I can think of right now, and I hope this updates everybody who still reads. OH! I almost totally forgot, our party that started last year as Jake's birthday party, that will now be our summer fling, and will probably end up next year as a benefit for Neurofibromatosis research, is in just a few weeks. It wasn't working out with the SPB boys due to simple "not-meant-to-be-ness" but we are really pleased that we were able to get Barefoot Nellie to come play some old fashioned bluegrass tunes for us. We are so excited we can hardly stand it.
See you there :-)
P.S. my camera is broken.. so no boxcar pics yet.
Jake is mostly over his difficult spell and, as usual, he has jumped forward in development. The reports from school are good. He's speaking more and answering questions more appropriately. He's been a joy to be around and to take on outings. A couple of weeks ago we went to the Keel Family Function over at cherokee farms in Lafayette. The weather was gorgeous, the music was wonderful, the kids had fun, and as an added bonus, it was a lucrative venture for my business. Jake and I spent the first night together just the two of us. It was fun and we fit in with the other vendors/carnies just fine. The second night Steve and Manny joined us. The second night wasn't so great since Jake puked all over the camper in the middle of the night due to too many hotdogs and soda pops. The third night my Mom kept the boys and Steve and I got to spend a night alone during the height of the festival. We met some great people and made a lot of new friends.
This past weekend was the Boxcar Pinion Memorial Bluegrass festival. For 4 years this yearly festival has been sort of a barometer for Jake's development, and well, he's doing great. He still does many things that are inappropriate for a child his age such as diving on people and touching others. He doesn't really play with the other children and gets anxious and needs to change venues often. He lets us know what he wants though, and often he wants to "go down see the music!" That makes my heart swell with pride. The first and second night he fell asleep on a rug under my easy-up declaring that he wanted to sleep outside so he could hear the music. He's my boy alright.
The last night of Boxcar was supposed to be another Mommy and Daddy date-night, however Manny got stung by a bee (he picks them up!) and I had to go pick him up and leave Steve to hang out with our friends. We've been blessed by meeting and/or getting-to-know-better some really awesome folks, Christie, August, Gwendal, Eric, Mike, Jim and all you amazing people that we've been hanging with. We've been especially blessed by our new friends Sara, Rick and Simon. They've come out to Keel and Boxcar as well as other outings with us and just seem like nice laid back folks. Its nice to have good friends with similar interests, goals and lifestyles.
Manny.. what can I say about Manny. He's really made very little improvement lately. In fact, he's a fussy, tantrumey mess. He still, of course, has no language. Lately I am seeing a bit more of a regression and its very worrisome. When he seems to forget skills I wonder if the tumor on his brain is growing or changing, or if he goes through a spell of worsening motor skills I wonder if the one on his spine is causing issues, however my gut tells me all that I need to know. Last night was another night of no-sleep and I laid beside him in bed listening to him squeal and make strange noises, I noticed him doing something I know all too well. He was squealing while at the same time making popping-clicking noises deep inside his mouth. This is the first time that I've heard him engage in vocal-stimming to this extent, but I've heard it all before (remember the stimming video I made of Jake?). He's simply regressing further into autism and its heartbreaking. While Jake was clingy and hated to be left with family or strangers, Manny is indifferent, and will go-to and stay with pretty much anyone without a fuss. He cuddles, but isn't particular as to who it is. It tears my heart completely out of my chest when his Dad sometimes says "Do you think that he loves us?" or "Do you think he misses us when we're gone?" I just don't know.
Last week Steve's parents took it upon themselves to call Atlanta Speech and hearing school, where Steve's brother went when he was little, and was in the first graduating class there. They wanted to take Manny for an assessment. Although I knew that there were no further tests that they could do for Manny, I was completely and utterly floored by this step and this show of love and understanding from his family. I was really afraid that they, especially Pops, thought that this was something new and exciting that would "open the door" as Pops put it, to bringing Manny out of his darkness. Steve traveled with them while I worked, and on the way down Pops said "I bet they'll put tubes in his ears and then he'll hear and start to talk." I guess this is what happened with Steve's brother. All of the same hearing and speech tests were repeated that I've done so far, and the specialist asked if we were doing OT, Babies can't wait, Headstart, etc. She was able to tell Steve's dad that Manny could hear, was most likely autistic with sensory processing and motor planning issues and that there was nothing more that could be done for him than we are already doing at this point. I think it was a good trip, even if it was hard on Steve's dad to hear from a professional what we'd been trying to tell him already.
Throughout the spring I've been working on my physical and mental health, trying to get over the anger and dispair and move on towards hope and acceptance. My mind is opening and realizing that no matter what happens, it will be OK. Even if Manny (or any of us really) doesn't survive as long as we would want him to, or be as successful as we would like for him to be, that he's here for a purpose and he's already taught me a lot. I have the best possible support team of family and friends and especially my husband, who puts up with me and loves me no matter how bad the "bad days" are.
I know that I'm lucky to have what we have with our boys when I see other children with much more serious conditions. A little girl came to Boxcar with her nurse this weekend who was born with a tumor larger than her head attached to her skull. She sleeps most of the time, doesn't feed herself or have many skills at all, has seizures and is strapped to a chair or carried by others. Her full-time nurse was so sweet, and spotted my children's issues instantly and was open and nice to talk to. Things may get worse for Manny, my (cursed) gut tells me that they will, but right now we're OK.
After Christmas I entered into a serious health overhaul, worked with a personal trainer and completely changed my diet. I won't be able to do the personal trainer any more but hoop-dance has come into my life just at the right time and taught me to enjoy my body, as well as daily metitation and DAILY study of music, something I've needed for years. Both the dog grooming and sewing business is picking up, and 2 weeks ago the Chattanooga Market started. I was completely overwhelmed with the number of friends and family who came down for opening day to support this cause that I so truly believe in and am proud to be a part of. Thank you everybody!
Thats really all I can think of right now, and I hope this updates everybody who still reads. OH! I almost totally forgot, our party that started last year as Jake's birthday party, that will now be our summer fling, and will probably end up next year as a benefit for Neurofibromatosis research, is in just a few weeks. It wasn't working out with the SPB boys due to simple "not-meant-to-be-ness" but we are really pleased that we were able to get Barefoot Nellie to come play some old fashioned bluegrass tunes for us. We are so excited we can hardly stand it.
See you there :-)
P.S. my camera is broken.. so no boxcar pics yet.
Sunday, March 21, 2010
A sad video, and a happy one
I took a video thursday to try to illustrate how worked up and anxious Jake has been lately. This isn't a tantrum, this is how he has been acting at home for a couple of weeks. The high pitched "uhhh uhhh uhhhh" was pretty much a constant. Just a little ball of nerves. Everything is "scary." I know this is a long one, and hard to watch. A couple of things to notice: His unusual language pattern "No broke on the school!" (I'm going to break the school? Maybe?) He makes an "explosion" sound and sign when he gets worked up talking about school to demonstrate how much he doesn't want to go to school. Random sentences "Want some helicopter." Oh, and he has been eating Mommy's dark chocolate hence the Joker mouth.
Maybe that helps to show why I haven't been able to blog lately... I've just been a wreck hoping that eventually SOMETHING would make him happy again. Sometimes I forget that he has these spells when he's trying to work through something new. The past few days he has made a 180 degree turnaround and has been happier, has begun to talk more, and although he has had some tantrums (what almost 5 year old doesn't), those tantrums have a beginning, and so thankfully, an end. I didn't know if I could endure another rainy day stuck indoors, but here is how most of the day was spent:
At least he's quiet.
Deep cleansing breath.
Maybe that helps to show why I haven't been able to blog lately... I've just been a wreck hoping that eventually SOMETHING would make him happy again. Sometimes I forget that he has these spells when he's trying to work through something new. The past few days he has made a 180 degree turnaround and has been happier, has begun to talk more, and although he has had some tantrums (what almost 5 year old doesn't), those tantrums have a beginning, and so thankfully, an end. I didn't know if I could endure another rainy day stuck indoors, but here is how most of the day was spent:
At least he's quiet.
Deep cleansing breath.
Thursday, March 18, 2010
I've been run down...
I can't believe that its been over a month since I blogged. My dad actually wrote me an email and asked if I had moved my webpage. Honestly, facebook is fun, and I love posting about our antics and having our experience validated by my friends, but I post the less exciting details here. I don't even know what to say about what has been going on this month, its been hectic, there is no schedule,....
Manny has been going to therapy with Cindy on Friday mornings. She wants to work with him with weighted clothes, pressure suits and other things that I am only barely beginning to understand. I have had experience with restless leg syndrome, and I understand the way that dogs experience the world. I try my best to try to understand how my children must see the world. I am capable of sewing some of the therapy equipment that is suggested to me, however I am having a really hard time motivating myself to sew some new items to try to increase sales, since business is at a standstill. It is hard to explain, but I really want several DAYS to lock myself into the sewing room and create, sew awesome backpacks and messengers that people will buy, pants for my kids, a dress for me, a pair of shorts for Steve for his birthday that has come and gone.... but instead my time is cut into one or two hour pieces, interrupted by dog grooming clients that barely pay me for my time, my late obsession with getting fit and healthy (just another constant source of guilt), laundry that is getting behind .. and scattered amongst days. I shouldn't really complain and act like an uptight artist type.. but it is still frustrating.. the job that used to be a "real job" has turned into a big fat flop... it will get better, I'm sure?
Gosh, that last paragraph describes exactly why I have avoided blogging for so long. I am losing my ability to organize my thoughts, I think.
Please enjoy this video of a talk given by the great autistic scholar, Temple Grandin. I can't imagine, if you know and love Jake, or me, for that matter, this video should make you go "oooooh.. yeah.. now I get it" :
http://www.ted.com/talks/temple_grandin_the_world_needs_all_kinds_of_minds.html
Manny still wasn't sleeping, as of 2 weeks ago, more than a few hours per night. It was enough to make everyone insane. Its really hard to explain to anyone what it is like to go without "real" sleep for 2 or 3 years. Most people think that you are exxaggerating. Those who don't think that you are exaggerating think that you aren't doing it right,a and if you'd just impart some harsher sleep tactics..... And only the most special of people are willing to offer to help.. on a weeknight.. just cause... (thanks, y'all).
One night Manny woke up at 11:30 Pm and didn't go back to sleep for 14 hours (after waking us up for 3 consecutive nights after a few hours of sleep). Jake got up at 4:30 AM and due to a frustrated mommy and a badly timed JERK to a blanket that Jake was standing/pulling on, Jake fell and his teeth hit the hardwood floor and his two front teeth ended up busted loose. I"m not going to talk a lot more about this incident.. because it was horrible.. probably the worst moment in my entire life. I need to push the keyboard away for just a few minutes so I can cry....
Jake completely blames me for this incident, because I was obviously angry when it happened... though I never thought he'd hit the floor if I jerked the blanket. He shows many signs that he is traumatized. Just like when I tried to send him to preschool when he was 3, he has decided that he MUST wear a hat, even when he's asleep. One of his teeth has nerve damage so it is dying. The teachers at school have showed a concern so I have taken him by Dr. Patterson's office to see if there's anything to be done for his dead tooth. No, it will be fine.. many children fall and bust their teeth... its a common injury.....
The incident has opened a new chapter in my relationship with my children. I must learn to keep my temper, no matter how it is challenged, move physically slower when I am angry, and try to accept what is happening in my life, even if it means less sleep.. much less sleep. Jake was already having a "spell" of unusual and really neurotic behaviour before this incident.. it couldn't have come at a worse time and I can't stop blaming msyelf.
At the advice of other parents, literature, and Manny's therapist, we have been giving him melatonin supplements. The change is so insanely dramatic I am almost afraid to post it here. With 3-4 mg of melatonin, Manny tends to sleep through the night from around 9 PM until 6 AM (give or take).
We barely know what to do when we wake up at 5 or 6 AM and he is still asleep...
I anguished over the decision to finally try to medicate him, even with melatonin.. which is a STRONG drug to me (makes me disoriented/sleepwalk, with just 1 MG). Finally, out of desperation, I gave him 3 MG of sublingual melatonin. He slept all night, until 6 AM.. a first. He had only been sleeping from about 8 or 9 until 2 or 3 AM consistently.
I was hesistant to admit to "conventional" practicioners that I was giving him melatonin.. I usually get chastised for pretty much anything I do.
Cindy, as usual, came to my rescue and agreed that a couple of weeks of melatonin therapy might jump-start his own pineal gland. I also read buku studies showing that children with NF1 may not produce melatonin all night.. and have a problem with night-waking. Also..the pineal gland is part of the thalmus.. and located very close to Manny's tumor.
While visiting Greenlife on Steve's birthday celebration (I think he had fun) to pick up a new supply of melatonin.. we went to check out at the check-out stand. The young lady running the register beeped our melatonin and said "be careful with that stuff.. its serious medicine."
"umm.. yeah." I said, kinda stunned. "I can't really take it" (i can't!)
she said "well, if you take it a lot, you become dependent on it, and your brain can't make your own melatonin, just be careful with it.. i'm not a fan."
I anguish. I lay awake. I can barely stand myself I'm so worked up over whether or not I'm making the right decisions for my children. If you run the checkout counter of a health food store... Please shut up.
Anne Monk, the special instructor from Babies Can't Wait works 1 day per week with Many at his preschool. Steve (and I) are always really happy when Manny says "juice" or "cheese"... he hasn't said many more words than that. I try.. i swear I try to stay positive. I think that Manny may obtain a pretty good vocabulary of nouns, however.. I am not sitting here thinking that he'll snap out of it, and ever become an adult who isn't a special needs person. Eveyone gets really angry at me for thinking that.
Steve and I have been very very lucky to have been able to attend several music events: Yonder at the Tabernacle, Further at the Tabernacle, I went alone/with friends to see Trey at the Tabernacle, Steve saw Sam Bush at Rhytmn and Brews, and we both caught Cornmeal this past weekend at rhythm and Brews.
Steve's birthday was yesterday on St. Patty's, and he wanted to go out. Unfortunately he was confined to the hours of 2 PM until 6 PM for his party. We lucked out, and after a wonderful lunch at Terminal Brewhouse we headed to Greenlife for whisky tasting on to St. Elmo for a crazy and impromptu parade and then onto the Moccasin Bend Brewhouse. I think he enjoyed himself :)
Last year we had a rockin cool time at Jake's birthday party. I am hesistant to call this years "Spring Thingamafling" a birthday party, but it should be a fun time. Don't tell anyone, but SLIM PICKINS! should be there. Start marking May 22 on your calendar.
Thats the best I can do to sum up a whole month :) Cheers.
Manny has been going to therapy with Cindy on Friday mornings. She wants to work with him with weighted clothes, pressure suits and other things that I am only barely beginning to understand. I have had experience with restless leg syndrome, and I understand the way that dogs experience the world. I try my best to try to understand how my children must see the world. I am capable of sewing some of the therapy equipment that is suggested to me, however I am having a really hard time motivating myself to sew some new items to try to increase sales, since business is at a standstill. It is hard to explain, but I really want several DAYS to lock myself into the sewing room and create, sew awesome backpacks and messengers that people will buy, pants for my kids, a dress for me, a pair of shorts for Steve for his birthday that has come and gone.... but instead my time is cut into one or two hour pieces, interrupted by dog grooming clients that barely pay me for my time, my late obsession with getting fit and healthy (just another constant source of guilt), laundry that is getting behind .. and scattered amongst days. I shouldn't really complain and act like an uptight artist type.. but it is still frustrating.. the job that used to be a "real job" has turned into a big fat flop... it will get better, I'm sure?
Gosh, that last paragraph describes exactly why I have avoided blogging for so long. I am losing my ability to organize my thoughts, I think.
Please enjoy this video of a talk given by the great autistic scholar, Temple Grandin. I can't imagine, if you know and love Jake, or me, for that matter, this video should make you go "oooooh.. yeah.. now I get it" :
http://www.ted.com/talks/temple_grandin_the_world_needs_all_kinds_of_minds.html
Manny still wasn't sleeping, as of 2 weeks ago, more than a few hours per night. It was enough to make everyone insane. Its really hard to explain to anyone what it is like to go without "real" sleep for 2 or 3 years. Most people think that you are exxaggerating. Those who don't think that you are exaggerating think that you aren't doing it right,a and if you'd just impart some harsher sleep tactics..... And only the most special of people are willing to offer to help.. on a weeknight.. just cause... (thanks, y'all).
One night Manny woke up at 11:30 Pm and didn't go back to sleep for 14 hours (after waking us up for 3 consecutive nights after a few hours of sleep). Jake got up at 4:30 AM and due to a frustrated mommy and a badly timed JERK to a blanket that Jake was standing/pulling on, Jake fell and his teeth hit the hardwood floor and his two front teeth ended up busted loose. I"m not going to talk a lot more about this incident.. because it was horrible.. probably the worst moment in my entire life. I need to push the keyboard away for just a few minutes so I can cry....
Jake completely blames me for this incident, because I was obviously angry when it happened... though I never thought he'd hit the floor if I jerked the blanket. He shows many signs that he is traumatized. Just like when I tried to send him to preschool when he was 3, he has decided that he MUST wear a hat, even when he's asleep. One of his teeth has nerve damage so it is dying. The teachers at school have showed a concern so I have taken him by Dr. Patterson's office to see if there's anything to be done for his dead tooth. No, it will be fine.. many children fall and bust their teeth... its a common injury.....
The incident has opened a new chapter in my relationship with my children. I must learn to keep my temper, no matter how it is challenged, move physically slower when I am angry, and try to accept what is happening in my life, even if it means less sleep.. much less sleep. Jake was already having a "spell" of unusual and really neurotic behaviour before this incident.. it couldn't have come at a worse time and I can't stop blaming msyelf.
At the advice of other parents, literature, and Manny's therapist, we have been giving him melatonin supplements. The change is so insanely dramatic I am almost afraid to post it here. With 3-4 mg of melatonin, Manny tends to sleep through the night from around 9 PM until 6 AM (give or take).
We barely know what to do when we wake up at 5 or 6 AM and he is still asleep...
I anguished over the decision to finally try to medicate him, even with melatonin.. which is a STRONG drug to me (makes me disoriented/sleepwalk, with just 1 MG). Finally, out of desperation, I gave him 3 MG of sublingual melatonin. He slept all night, until 6 AM.. a first. He had only been sleeping from about 8 or 9 until 2 or 3 AM consistently.
I was hesistant to admit to "conventional" practicioners that I was giving him melatonin.. I usually get chastised for pretty much anything I do.
Cindy, as usual, came to my rescue and agreed that a couple of weeks of melatonin therapy might jump-start his own pineal gland. I also read buku studies showing that children with NF1 may not produce melatonin all night.. and have a problem with night-waking. Also..the pineal gland is part of the thalmus.. and located very close to Manny's tumor.
While visiting Greenlife on Steve's birthday celebration (I think he had fun) to pick up a new supply of melatonin.. we went to check out at the check-out stand. The young lady running the register beeped our melatonin and said "be careful with that stuff.. its serious medicine."
"umm.. yeah." I said, kinda stunned. "I can't really take it" (i can't!)
she said "well, if you take it a lot, you become dependent on it, and your brain can't make your own melatonin, just be careful with it.. i'm not a fan."
I anguish. I lay awake. I can barely stand myself I'm so worked up over whether or not I'm making the right decisions for my children. If you run the checkout counter of a health food store... Please shut up.
Anne Monk, the special instructor from Babies Can't Wait works 1 day per week with Many at his preschool. Steve (and I) are always really happy when Manny says "juice" or "cheese"... he hasn't said many more words than that. I try.. i swear I try to stay positive. I think that Manny may obtain a pretty good vocabulary of nouns, however.. I am not sitting here thinking that he'll snap out of it, and ever become an adult who isn't a special needs person. Eveyone gets really angry at me for thinking that.
Steve and I have been very very lucky to have been able to attend several music events: Yonder at the Tabernacle, Further at the Tabernacle, I went alone/with friends to see Trey at the Tabernacle, Steve saw Sam Bush at Rhytmn and Brews, and we both caught Cornmeal this past weekend at rhythm and Brews.
Steve's birthday was yesterday on St. Patty's, and he wanted to go out. Unfortunately he was confined to the hours of 2 PM until 6 PM for his party. We lucked out, and after a wonderful lunch at Terminal Brewhouse we headed to Greenlife for whisky tasting on to St. Elmo for a crazy and impromptu parade and then onto the Moccasin Bend Brewhouse. I think he enjoyed himself :)
Last year we had a rockin cool time at Jake's birthday party. I am hesistant to call this years "Spring Thingamafling" a birthday party, but it should be a fun time. Don't tell anyone, but SLIM PICKINS! should be there. Start marking May 22 on your calendar.
Thats the best I can do to sum up a whole month :) Cheers.
Thursday, February 11, 2010
Another BCW meeting
Yesterday Ellen (service coordinator) and Susan ("former" OT) came to our house for another meeting to determine what services Manny will get from Babies Can't wait and for an evaluation. Ellen said that an evaluation is needed any time that a child shows regression. I opted to decline Susan's services. From what I can tell, she comes to Dalton twice per month, on two days that she determines a day or two in advance, and if that doesn't fit within the parent's schedule, then they must wait another two weeks. She doesn't come any other times. Unfortunately, she's the only OT that the entire area has, and that area is large. I was also offered once-per-week OT in a location a little over one hour away. I also declined that. They were able to offer a special instructor, a special education teacher in our area for over 30 years. I can't remember her first name at the moment. Her schedule is full until March, but after that she will be able to see Manny once per week either at school or here at my house. She is local (just up the road, actually), and it will be suggested to her that, in the event of a cancellation, she try to see Manny twice per week.
I'm sure that Susan is a fine OT, but with her strict schedule and my need for advanced notice, it just wasn't working out. She gave me some ideas to work with Manny. They were great ideas, but seemed optimistic of his developmental level.
Just a few hours after our meeting ended, the special instructor called to let me know that she was excited to see Manny, that she was on board and "I WILL be there." I can only hope that she really means what she says. Meanwhile, Manny will begin to see Cindy next week. Things are "almost" happening. I try to be optimistic.
I went to Manny's preschool Valentine's day party today. I had flashbacks to Jake's Valentine's party, which took place in the same room with Ms. Dixcee. That was my first HUGE wake-up call that Jake was nowhere NEAR the other kids on a developmental level, but I was a first-time mom, and trying to make sense of it. With Manny, I know, and it is inherently more obvious. Manny is so much more behind than Jake was. I'm more prepared, but it doesn't hurt less. The other children are sitting and eating and asking respectfully for more juice or chips, while Manny smears food everywhere, and spits out much of what he puts in his mouth. A substitute aid, a grandmother, was hovering over Manny (even though I was RIGHT there sitting with him) and worried aloud if he would choke on an apple slice (not a stretch at all). Manny can't drink out of a juice box efficiently. He doesn't care about the packages put in front of him as valentines gifts, even though they contain candies and toys. Compared to the other children, he's just not there.. he's an infant who can walk.. at least pretty well.
I asked the teachers point-blank if he is a distraction in class, or just too much trouble. I thanked them profusely for taking care of him, and let them know that I know that he requires extra care, and how much it means to him to be around typical kids. His teacher went on and on about how they'd absolutely LOVE to have the special instructor or OT come to class and give them ideas for things that they can do. We had this discussion openly in front of all of the other parents. They just sat quietly. None of the other parents spoke to me. I don't really blame them. Not only do I look different (what's new?), but I have the different child. It must be as uncomfortable for them as it is for me in those moments.
Jake is doing great at school. His teachers send me his art and writing and I chuckle because I have pages and pages of these at home, and don't even get me started on the doodle pad entries I wish I could save.
Jake has an axillary freckle (cafe au lait spot under his armpit) which is a diagnostic element of NF1. I noticed it around the time Manny was diagnosed. Since then he has only recently developed what looks like a quarter sized cafe-au-lait spot in his underwear area. Again, the placement and development is consistent with NF1. I should probably burn my computer, or at least disable google.
I'm sure that Susan is a fine OT, but with her strict schedule and my need for advanced notice, it just wasn't working out. She gave me some ideas to work with Manny. They were great ideas, but seemed optimistic of his developmental level.
Just a few hours after our meeting ended, the special instructor called to let me know that she was excited to see Manny, that she was on board and "I WILL be there." I can only hope that she really means what she says. Meanwhile, Manny will begin to see Cindy next week. Things are "almost" happening. I try to be optimistic.
I went to Manny's preschool Valentine's day party today. I had flashbacks to Jake's Valentine's party, which took place in the same room with Ms. Dixcee. That was my first HUGE wake-up call that Jake was nowhere NEAR the other kids on a developmental level, but I was a first-time mom, and trying to make sense of it. With Manny, I know, and it is inherently more obvious. Manny is so much more behind than Jake was. I'm more prepared, but it doesn't hurt less. The other children are sitting and eating and asking respectfully for more juice or chips, while Manny smears food everywhere, and spits out much of what he puts in his mouth. A substitute aid, a grandmother, was hovering over Manny (even though I was RIGHT there sitting with him) and worried aloud if he would choke on an apple slice (not a stretch at all). Manny can't drink out of a juice box efficiently. He doesn't care about the packages put in front of him as valentines gifts, even though they contain candies and toys. Compared to the other children, he's just not there.. he's an infant who can walk.. at least pretty well.
I asked the teachers point-blank if he is a distraction in class, or just too much trouble. I thanked them profusely for taking care of him, and let them know that I know that he requires extra care, and how much it means to him to be around typical kids. His teacher went on and on about how they'd absolutely LOVE to have the special instructor or OT come to class and give them ideas for things that they can do. We had this discussion openly in front of all of the other parents. They just sat quietly. None of the other parents spoke to me. I don't really blame them. Not only do I look different (what's new?), but I have the different child. It must be as uncomfortable for them as it is for me in those moments.
Jake is doing great at school. His teachers send me his art and writing and I chuckle because I have pages and pages of these at home, and don't even get me started on the doodle pad entries I wish I could save.
Jake has an axillary freckle (cafe au lait spot under his armpit) which is a diagnostic element of NF1. I noticed it around the time Manny was diagnosed. Since then he has only recently developed what looks like a quarter sized cafe-au-lait spot in his underwear area. Again, the placement and development is consistent with NF1. I should probably burn my computer, or at least disable google.
Wednesday, February 3, 2010
OT Evaluation with Cindy
Because I made Manny's appointment at 11:30, I let Cindy know, upon arrival, that I would need to leave right at or a few minutes before 12:30, so I could be sure to be home when Jake got off of the bus. She threw some paperwork at me, and I worked on that while she filled out an assessment, asked questions, watched Manny, and we talked. Pretty soon she said "I will cut to the chase, I know you well and feel like we can just jump in here."
(Lay it on me, I'm more than ready.)
According to Cindy's assessment, Manny's motor and adaptive skills are quite delayed, but she feels that at least he is showing improvement. However, his Social, Communication/Speech and Cognitive skills are next to non-existent. Not a surprise, but as always, hard to hear.
(Great, fine, OK. What do we do? Give me a plan, give me hope, we have 20 more minutes, you can do it.)
Cindy says that we need to gang up on Manny from every side, with intense therapy. She has offered, because of my schedule and hers, to come in on what is usually her day off, Friday, and see Manny at 9:30 in the morning every week. She also suggested that I ask Babies Can't wait if we can get a special instructor 2 days per week, but at least one day, and that instructor can either come to the house, or go to his preschool. Either way, she would like for her or someone to instruct his preschool teachers with some activities that will engage him, at least for a little while during the day. Also, since Steve's parents spend many hours with him every week, she would like to see them bring him to therapy sessions at least a little so that they can also learn specific activities that will engage him.
(Ok! Awesome! We have a plan, with a whole 5 minutes left! What activities.. I'll start today!)
Well, it was only an hour, and an assessment. Cindy doesn't know what to do with him either.. yet. What does Manny like? I don't know... chewing on things? Laying on the floor? Riding in the carrier? She says we may even need to build on some of those things.. but we're going to figure it out. She said we would. I came home and sent some photos for printing for a picture board for his favorite foods. I actually feel like I have someone on my team who WILL figure it out.
Cindy asked me an interesting question when we were having the discussion about finding things he was interested in. "What is the main difference you see between Manny and Jake at this point?"
Oh gosh, well.. Jake was.. for one thing, talking. At 2 and a half he was ONLY labeling, but had a vocabulary of a zillion words. He LOVED to label. He was good at drawing, he suddenly got interested in sign language, and that was a whole NEW way to label. It wasn't rocket science, I just took the things that he was good at, the things he was interested in and I built upon that. So.. lets learn sign language for emotions, lets label emotions, and actions, and abstract ideas!
Manny doesn't have these interests, or skills. He's not "good at" anything. I have no idea where to start. I'm twice as terrified for him, and only half as hopeful, at least on my own. Jake, his Dad and I did a decent job on our own, but Jake showed us the way. We need a little more guidance when it comes to Manny, and a LOT more help from our support team.
And we have it! When I got home I called Steve's mother to ask her if she could help me with the kids tomorrow afternoon. I didn't even get a hello out before I was asked "How did the appointment go!?" I keep forgetting that she also had a special needs child who required a lot of help and extra attention, and doesn't resist talking about the "uncomfortable" subject of her grandkids. She listened to what I had to say and asked if Manny was going on Friday. Oh Jeez.. no.. I have 8 dogs lined up for Friday.. there's no way, I don't even know if I could even get in TOUCH with all of those people in time, besides, that's my only day this week to make money. "Well, don't turn her down! I'll take him to Cindy if he can get an appointment, and then take him home with me so you can do the dogs. I'm taking Pops too, he's going to go to some sessions with Cindy too, because Manny likes him, and listens to him."
(Really? Am I dreaming? I can have an iota of balance in my life, AND Manny will get the help he needs? Its not going to rest on JUST Steve and me? "Grateful" doesn't begin to describe how I feel towards them at this point. They just WANT to help?!)
Later I returned a call from Ellen, the Service Coordinator at Babies can't wait. I was aware that she was rushed and on her way to a meeting with someone else. She ran down what the the team decided. Susan, the OT, said that it was not possible for her to make up the lost OT appointments, since she is only willing to travel to the Dalton area twice per month, so Ellen and Susan will meet at my house, a week from today, to "talk about what will happen." I didn't really have a chance to respond. Ellen made it clear that, since it is a state program, certain steps must be taken in order to make a new plan, and all of that takes TIME. Manny has been in the BCW program for 5 months and in 7 months he will be 3 years old and will no longer be eligible, as the school system will take over. I want to call Ellen tomorrow and ask if we can skip the time-consuming meeting with Susan, drop OT with her, and ask for a "special instructor" to help with Manny, like Cindy suggested. I really hope that that will make things easier for BCW, I really do, so that they can send Susan to someone else who might need her more, and so that I can both keep Cindy, and get as much intensive therapy and help as we can for the 7 months we have remaining with Manny in that particular program. I just want to maximize Manny's exposure to HELP, combine the resources that WE can (sort of) afford with what the state has to offer, but I can only hold out so long for BCW. How irionic.. "I can only wait so long for Babies Can't Wait."
As if this post isn't long enough, I am going to brag about my first-born for a moment.
I laugh when the teachers send home a note marveling at his ability to read, write, spell, etc. In that aspect, yes, he is a genius! But the same phenomenon can be seen in Steve and I as we saw (and despaired at) in his early therapists. We are simply non-plussed by his abilities to read and write (well not really, we love being the parents of a genius), however we marvel at notes like these from his teacher:
"He sat during circle time and participated very well."
"He is following directions and cleaning up when asked."
"He was interacting with another child this morning and playing a tickle game. His participation during circle time is increasing. "
"During small group time Jake was doing pretend play with a horse and carriage. Very appropriate play!"
Today I took this video, and my friend, who I've never met in real life, but who has been insanely influential in our path as parents of these special kids, typed a message to me "So you say the boy is autisic huh?? From that video you'd NEVER know." Some people might say that and I wouldn't like it, but since she's worked with special needs kids (and from what I can gather, is really REALLY good at it, considering she's been able to cyber-coach me through some very hard times) I see it as the highest praise for my little boy. Thanks Carrie, you mean a lot to us.
Look at that referencing, the anticipation, the shared experience... Thats my boy!
(Lay it on me, I'm more than ready.)
According to Cindy's assessment, Manny's motor and adaptive skills are quite delayed, but she feels that at least he is showing improvement. However, his Social, Communication/Speech and Cognitive skills are next to non-existent. Not a surprise, but as always, hard to hear.
(Great, fine, OK. What do we do? Give me a plan, give me hope, we have 20 more minutes, you can do it.)
Cindy says that we need to gang up on Manny from every side, with intense therapy. She has offered, because of my schedule and hers, to come in on what is usually her day off, Friday, and see Manny at 9:30 in the morning every week. She also suggested that I ask Babies Can't wait if we can get a special instructor 2 days per week, but at least one day, and that instructor can either come to the house, or go to his preschool. Either way, she would like for her or someone to instruct his preschool teachers with some activities that will engage him, at least for a little while during the day. Also, since Steve's parents spend many hours with him every week, she would like to see them bring him to therapy sessions at least a little so that they can also learn specific activities that will engage him.
(Ok! Awesome! We have a plan, with a whole 5 minutes left! What activities.. I'll start today!)
Well, it was only an hour, and an assessment. Cindy doesn't know what to do with him either.. yet. What does Manny like? I don't know... chewing on things? Laying on the floor? Riding in the carrier? She says we may even need to build on some of those things.. but we're going to figure it out. She said we would. I came home and sent some photos for printing for a picture board for his favorite foods. I actually feel like I have someone on my team who WILL figure it out.
Cindy asked me an interesting question when we were having the discussion about finding things he was interested in. "What is the main difference you see between Manny and Jake at this point?"
Oh gosh, well.. Jake was.. for one thing, talking. At 2 and a half he was ONLY labeling, but had a vocabulary of a zillion words. He LOVED to label. He was good at drawing, he suddenly got interested in sign language, and that was a whole NEW way to label. It wasn't rocket science, I just took the things that he was good at, the things he was interested in and I built upon that. So.. lets learn sign language for emotions, lets label emotions, and actions, and abstract ideas!
Manny doesn't have these interests, or skills. He's not "good at" anything. I have no idea where to start. I'm twice as terrified for him, and only half as hopeful, at least on my own. Jake, his Dad and I did a decent job on our own, but Jake showed us the way. We need a little more guidance when it comes to Manny, and a LOT more help from our support team.
And we have it! When I got home I called Steve's mother to ask her if she could help me with the kids tomorrow afternoon. I didn't even get a hello out before I was asked "How did the appointment go!?" I keep forgetting that she also had a special needs child who required a lot of help and extra attention, and doesn't resist talking about the "uncomfortable" subject of her grandkids. She listened to what I had to say and asked if Manny was going on Friday. Oh Jeez.. no.. I have 8 dogs lined up for Friday.. there's no way, I don't even know if I could even get in TOUCH with all of those people in time, besides, that's my only day this week to make money. "Well, don't turn her down! I'll take him to Cindy if he can get an appointment, and then take him home with me so you can do the dogs. I'm taking Pops too, he's going to go to some sessions with Cindy too, because Manny likes him, and listens to him."
(Really? Am I dreaming? I can have an iota of balance in my life, AND Manny will get the help he needs? Its not going to rest on JUST Steve and me? "Grateful" doesn't begin to describe how I feel towards them at this point. They just WANT to help?!)
Later I returned a call from Ellen, the Service Coordinator at Babies can't wait. I was aware that she was rushed and on her way to a meeting with someone else. She ran down what the the team decided. Susan, the OT, said that it was not possible for her to make up the lost OT appointments, since she is only willing to travel to the Dalton area twice per month, so Ellen and Susan will meet at my house, a week from today, to "talk about what will happen." I didn't really have a chance to respond. Ellen made it clear that, since it is a state program, certain steps must be taken in order to make a new plan, and all of that takes TIME. Manny has been in the BCW program for 5 months and in 7 months he will be 3 years old and will no longer be eligible, as the school system will take over. I want to call Ellen tomorrow and ask if we can skip the time-consuming meeting with Susan, drop OT with her, and ask for a "special instructor" to help with Manny, like Cindy suggested. I really hope that that will make things easier for BCW, I really do, so that they can send Susan to someone else who might need her more, and so that I can both keep Cindy, and get as much intensive therapy and help as we can for the 7 months we have remaining with Manny in that particular program. I just want to maximize Manny's exposure to HELP, combine the resources that WE can (sort of) afford with what the state has to offer, but I can only hold out so long for BCW. How irionic.. "I can only wait so long for Babies Can't Wait."
As if this post isn't long enough, I am going to brag about my first-born for a moment.
I laugh when the teachers send home a note marveling at his ability to read, write, spell, etc. In that aspect, yes, he is a genius! But the same phenomenon can be seen in Steve and I as we saw (and despaired at) in his early therapists. We are simply non-plussed by his abilities to read and write (well not really, we love being the parents of a genius), however we marvel at notes like these from his teacher:
"He sat during circle time and participated very well."
"He is following directions and cleaning up when asked."
"He was interacting with another child this morning and playing a tickle game. His participation during circle time is increasing. "
"During small group time Jake was doing pretend play with a horse and carriage. Very appropriate play!"
Today I took this video, and my friend, who I've never met in real life, but who has been insanely influential in our path as parents of these special kids, typed a message to me "So you say the boy is autisic huh?? From that video you'd NEVER know." Some people might say that and I wouldn't like it, but since she's worked with special needs kids (and from what I can gather, is really REALLY good at it, considering she's been able to cyber-coach me through some very hard times) I see it as the highest praise for my little boy. Thanks Carrie, you mean a lot to us.
Look at that referencing, the anticipation, the shared experience... Thats my boy!
Small Update
Ellen, Manny's service coordinator with Babies Can't Wait, called on Monday. She said that she was meeting with "the team" Tuesday (yesterday) to discuss Manny's services. I explained my frustrations so far. She said that she is going to discuss my suggestions that A) we get compensation for the OT appointments that have been missed and B) set Manny up with either speech therapy or a special instructor to come weekly. She again stated that we can not do OT with Cindy AND with the state. I have since found out that this is not true and that we are entitled to help from the State regardless of what we are doing privately. She said that she will be calling me today to update me on what they decided, and I plan on bringing this up. I can understand BCW's delimma, and their desire to keep money in the program and give it to people who are more "deserving" of services than we are, however I would prefer that at least one person be honest with me. I simply wish that I wouldn't have wasted Manny's precious time waiting on a program that was supposed to help my son, not simply give lip service to what they are supposed to do.
Manny's first appointment with Cindy is today. I have a giant knot in my stomach in anticipation of this assessment. I trust Cindy and want to think that she can help Manny, but I'm not looking forward to what she has to say abou this development. The appointment is at 11:30, usually near Manny's naptime, but I took what I could get to get my foot in the door. I'm hoping to set up a weekly session with her as early in the morning as possible.
Ok, putting my head down and walking into the wind.....
Manny's first appointment with Cindy is today. I have a giant knot in my stomach in anticipation of this assessment. I trust Cindy and want to think that she can help Manny, but I'm not looking forward to what she has to say abou this development. The appointment is at 11:30, usually near Manny's naptime, but I took what I could get to get my foot in the door. I'm hoping to set up a weekly session with her as early in the morning as possible.
Ok, putting my head down and walking into the wind.....
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