When I started home schooling the kids a few weeks ago, Little Man knew his 1's, 2's and some of his 3 times tables. Today he did a test on his iPad with multiplication up to 10x10. Here's the result:
Home schooling isn't a long term option for us, but seeing the amazing progress that both the kids are making gives me so much hope. Little Man has made more progress in the past few weeks than he has in the past three years of school. Add to that this article that my brother found, that shows the autistic brain is exactly as I'd thought of it all these years - just geared differently, but with different strategies and teaching methods definitely capable of learning - and we have a lot of hope.
I have every hope that after we move and get the right assistance set up, Little Man will continue his amazing progress. I don't care how long it takes, I'm just so happy to see lights coming on in that amazing, unique mind of his.
Wednesday, April 13, 2011
Tuesday, April 12, 2011
A Milestone...Kinda
Last night Beans told me his tummy hurt. Now in most kids, tummy bugs are just one of those things. You deal with them and move on. In Beans, who is fully dependent on tube feedings, a tummy bug all too often has meant walking a fine line between trying to keep him hydrated and keeping him out of the ER or admitted. So of course last night, when I heard those dreaded words, my mommy mind started running. "Oh crap, how can we manage this at home?" "If he needs it, do I make the 5 hour drive to Orlando, where the children's hospital and his trusted team are, or do I chance the local hospital that I don't trust?"
I hooked his tummy up to a Farrell valve, allowing him to vent all night (throw up through his g-tube for those who haven't had the experience). He can't throw up due to a surgery he's had, so being nauseous is super miserable.
This morning things were still rocky. I tried a small feed which was promptly "redelivered" (yeah, have I mentioned that venting into a bag is actually about a million times less messy than the traditional method). Typically this would be the time I started getting really worried.
Where's the milestone in all this? Well, Beans took a few hours to rest then was able to tolerate slow feeds of Pedialyte through his pump! He's been able to keep in enough to stay hydrated all day and is now in bed with a slow feed. He's still having some pain, but I can kiss that worry of IVs goodbye, at least this time. WTG Beans!!!
I hooked his tummy up to a Farrell valve, allowing him to vent all night (throw up through his g-tube for those who haven't had the experience). He can't throw up due to a surgery he's had, so being nauseous is super miserable.
This morning things were still rocky. I tried a small feed which was promptly "redelivered" (yeah, have I mentioned that venting into a bag is actually about a million times less messy than the traditional method). Typically this would be the time I started getting really worried.
Where's the milestone in all this? Well, Beans took a few hours to rest then was able to tolerate slow feeds of Pedialyte through his pump! He's been able to keep in enough to stay hydrated all day and is now in bed with a slow feed. He's still having some pain, but I can kiss that worry of IVs goodbye, at least this time. WTG Beans!!!
Saturday, April 9, 2011
Soccer!!
Today the heat really made itself known here in Florida. I forgot how much the heat takes out of the kids. I'm also trying to figure out how to juggle Beans' tube feedings. If you feed him when he's too hot, he gives it right back. Not a productive use of calories at all. ;)
Ignoring the heat, I signed the kids up for spring soccer. Beans played last year and really loved it. He's been begging to play again for months. Little Man played once when he was in kindergarten. It was fine then because all the kids were little, didn't really know what was going on and were just happy to be running around.
This year he's in the 12 and Under bracket. It will be quite different. Sports here in the country in the good old south are a BIG deal. He is really excited though, so I had to give him this opportunity. I requested he be placed on the same team with his good friend, T. They will both be thrilled if they end up together, I just hope they get a patient coach. ;) Little Man and T are adorable together....and get quite hyper.
Apparently I didn't explain "registration" very well. Both kids were very disappointed to leave the fields without practicing. Oops. We should hear from their coaches this week and then they'll get plenty of soccer in. In the meantime, the backyard is providing great kicking practice. :D
One thing that I've come to know with Little Man - you just never know how he'll react. He may be totally into the game or he may get out on the field and be in his own little world. He's not the most coordinated fellow on earth, part genetics, part hypotonia, part autism, and part just being Little Man. As long as he enjoys it, that's all the matters.
Here's to a good soccer season!
Ignoring the heat, I signed the kids up for spring soccer. Beans played last year and really loved it. He's been begging to play again for months. Little Man played once when he was in kindergarten. It was fine then because all the kids were little, didn't really know what was going on and were just happy to be running around.
This year he's in the 12 and Under bracket. It will be quite different. Sports here in the country in the good old south are a BIG deal. He is really excited though, so I had to give him this opportunity. I requested he be placed on the same team with his good friend, T. They will both be thrilled if they end up together, I just hope they get a patient coach. ;) Little Man and T are adorable together....and get quite hyper.
Apparently I didn't explain "registration" very well. Both kids were very disappointed to leave the fields without practicing. Oops. We should hear from their coaches this week and then they'll get plenty of soccer in. In the meantime, the backyard is providing great kicking practice. :D
One thing that I've come to know with Little Man - you just never know how he'll react. He may be totally into the game or he may get out on the field and be in his own little world. He's not the most coordinated fellow on earth, part genetics, part hypotonia, part autism, and part just being Little Man. As long as he enjoys it, that's all the matters.
Here's to a good soccer season!
Whoops
Long time no see. Sorry about that. Life's been busy here like everywhere. I'm not even going to attempt to chronicle the rollercoaster of the last few months. Let's just say there was much more fighting with the school district, trying to get Little Man what he needs, and with Beans' school trying to get them to understand what having a chronic illness is. It ultimately came down to the district here is not willing to do the things needed to keep them safe and help them in the areas they need help. So I did something (again) that I said I'd never do - pulled them from school completely and we're a home schooling family now. Yikes!Sure never thought we'd be here. We're only doing this short term until the end of the school year. Then we'll get them setup in the next district after we move to Connecticut this summer. Though its something I initially dreaded, the difference in both the kids is amazing. Beans is more happy and giggly than I've ever seen him. He's put on 5 pounds!!! since I withdrew him. I don't know if there was something environmental going on there that was causing problems, if it was just the stress of being in the classroom or what, but he's looking great! Little Man's learning comes and goes, he has trouble retaining what he's learned. Using hands on materials where he can see directly what you're trying to accomplish has helped him learn some skills we've been working on for years. I wouldn't say they're mastered yet, but they're starting.
Health wise things are a bit backwards of where they usually are. Beans is actually the stable one right now! Growing and gaining weight, no food is terrible on the mind, but so good on his body. I constantly think what a cruel disease eosinophilic disorders are: you feel terrible all the time so you never want to eat, but take away the food and you feel good and want to eat but can't. He sees the GI next month and we're hoping he can start food trials to find at least something he can safely eat.
Little Man is the iffy one right now. Emotionally he's doing very, very well. Health wise, not so much. He's lost 15 pounds since October. First it was gradual and then he lost a huge chunk in a matter of a couple weeks. He refused to eat and was having terrible tummy pains. The pediatrician double his Prevacid and he sees the GI early next month on the same day as Beans. He is back to eating and has put back on a couple pounds, but still has a lot of trouble with pain and only eats minimally. We're supplementing him with Pediasure until the GI appointment because he simply can't lose any more weight.
Beans will definitely be having an endoscopy to check the status of his eosinophilic esophagitis in May and Little Man is likely facing one as well, possibly even other testing to get his tummy feeling better again. Little Man may be facing more stomach surgery or the GI may have other ideas. We'll just have to see. Ideally we can manage it with meds.
I graduate from college on April 30th, May 5th we head to Orlando for the GI appointments, then we'll hopefully be making our big move in June, July 1 at the latest. I need to leave enough time between the GI appointment and when we move for testing, procedures, and all that fun stuff that needs to be in order before we transfer over to new doctors.
In the morning we're signing both the kids up for soccer! They're so excited. It's iffy whether Little Man will be able to handle it, but we'll never know if we don't try so we're going to give it a whirl. :D
Friday, December 17, 2010
2 Years! Wow!
Today I realized that Beans has been on g-tube (stomach) feeds for 2 years now! Just over two years ago, he was admitted to Arnold Palmer hospital in Orlando. He was placed on IV fluids and j feeds (intestine) were stopped. It was time to determine if he needed a separate J tube (as opposed to keeping the GJ he'd had for 5 years which has to be replaced in the hospital) or if he could tolerate G feeds. All bets were on him getting the separate J tube, but he shocked us all - doctors included!
When he entered the hospital, he was on his feeding pump 22 hours a day. He had to carry around his backpack everywhere he went and the vast majority of time he had to have an additional bag hanging off that allowed his stomach contents to "vent."
Now granted, the GJ was a huge improvement over the NJ. He's had some sort of feeding tube since he was 2. He had the G tube for a year, then the GJ tube for 4 years, he lost the GJ shortly before we moved from Utah to Florida due to multiple resistant infections. During the few months the tube was out to allow his stomach to heal, he had the NJ. This tube was TORTURE. Placement was unbearable and could take over 2 hours, during which Beans would be crying, gagging and vomiting. The doctors would feed the tube down his nose, down his throat and esophagus, through his stomach and out into his intestines. Then they'd feed it quite a ways into his intestines. The hardest part was getting it out of his stomach. Those were some tough times. People staring, him accidentally pulling it out, and starting a new school in a new state with a tube sticking out of your nose certainly didn't make it any easier.
But now, he gets fed every 3 hours! If his tube gets pulled out, I can simply replace it at home (as long as we notice right away). No tube sticking out of his nose, no backpack to lug around, no bag of yuck hanging off him, not even a dangling tube to get caught. These are the great times! As my grandmother and I constantly remind each other, you just don't know how great the good times are unless you've had the hard times. For this I am thankful.
When he entered the hospital, he was on his feeding pump 22 hours a day. He had to carry around his backpack everywhere he went and the vast majority of time he had to have an additional bag hanging off that allowed his stomach contents to "vent."
Now granted, the GJ was a huge improvement over the NJ. He's had some sort of feeding tube since he was 2. He had the G tube for a year, then the GJ tube for 4 years, he lost the GJ shortly before we moved from Utah to Florida due to multiple resistant infections. During the few months the tube was out to allow his stomach to heal, he had the NJ. This tube was TORTURE. Placement was unbearable and could take over 2 hours, during which Beans would be crying, gagging and vomiting. The doctors would feed the tube down his nose, down his throat and esophagus, through his stomach and out into his intestines. Then they'd feed it quite a ways into his intestines. The hardest part was getting it out of his stomach. Those were some tough times. People staring, him accidentally pulling it out, and starting a new school in a new state with a tube sticking out of your nose certainly didn't make it any easier.
But now, he gets fed every 3 hours! If his tube gets pulled out, I can simply replace it at home (as long as we notice right away). No tube sticking out of his nose, no backpack to lug around, no bag of yuck hanging off him, not even a dangling tube to get caught. These are the great times! As my grandmother and I constantly remind each other, you just don't know how great the good times are unless you've had the hard times. For this I am thankful.
Tuesday, November 23, 2010
Wow! Just Wow!
Today was our second day of Little Man being on homebound schooling. It will still take time for the district to get setup for the teacher to come to our house, but in the meantime I don't want him to think he just gets to play so we've been working hard.
The amazing thing is seeing how well he's doing emotionally/mental health wise. O.M.G. This child is HAPPY, COOPERATIVE, and working very hard. We're following a similar system as he used at school, but customized to Little Man. Today he worked on telling time (7 right out of 9!)
and cursive letter 'a' and 'A.' Handwriting/fine motor is a huge struggle for him so at first we're just working on tracing. He did the best I've ever seen. 
I'm not a teacher, and really never want to be one, but if just me implementing things his therapists and specialists have told me over the years makes such a big difference, imagine what he'll do once he's in school with a qualified teacher and in the right placement. He's going to fly!! Watch out world - here he comes! :D
The amazing thing is seeing how well he's doing emotionally/mental health wise. O.M.G. This child is HAPPY, COOPERATIVE, and working very hard. We're following a similar system as he used at school, but customized to Little Man. Today he worked on telling time (7 right out of 9!)
and cursive letter 'a' and 'A.' Handwriting/fine motor is a huge struggle for him so at first we're just working on tracing. He did the best I've ever seen. 
I'm not a teacher, and really never want to be one, but if just me implementing things his therapists and specialists have told me over the years makes such a big difference, imagine what he'll do once he's in school with a qualified teacher and in the right placement. He's going to fly!! Watch out world - here he comes! :DFriday, November 19, 2010
Wow. Never Say Never.
When Little Man was a little baby and had some health issues, I used to say, "Health issues? I can handle this. Please just no developmental issues." Then he was diagnosed developmentally delayed. Okay. I can handle developmental delay, just please no autism, I could never handle that. You can guess what came next. Yup, an autism diagnosis. I could go on, but you get the point.
This year school has been hell for my little sweetie. He's in a self-contained special ed class (meaning only special ed kids) and still....failing. This is the first year he's ever really noticed his grades and what he sees is depressing. The biggest lesson he's learned? Work your hardest so you can still get an F. Ouch. His IEP meeting was a disaster almost a month ago with such phrases as "he needs to get used to failing" and "we're making all the accommodations and modifications possible, there's nothing more we can do" and "if we give him academic work on his level then you're (meaning me) giving up on him." Despite losing progress in both math and reading, they insisted on frustrating him with work he can't yet attain and then punishing him when he didn't complete it on time.
As his frustrations at school have grown, his mental state has declined. Drastically. In a kid who already has a fragile emotional state due to many factors, this sent him over the edge. He started having visual and auditory hallucinations, lost tolerance for things such as Beans having the television on, lost interest in his toys and started wetting the bed again. Aggressive behavior we haven't seen in a very long time came back, emotional swings from laughing to hysterics and back again in moments. In short, I feel like my son is being sucked away a little at a time.
Our only hope was today's appointment with his psychiatrist and developmental pediatrician. I have been pleading for the past month that they would have some answer. I got all the paperwork together - his IEP, samples of classroom work, videos of him doing his best to do his homework, my list of his current issues and begging for help from the school, and perhaps most important of all - a letter Little Man himself dictated to his doctors. While the contents of the letter are private, the insight it provided into the frustration and hurt my little guy has been going through is shocking.
Today we finally, finally got help. These doctors know Little Man very well and their care for him is quite evident. They reviewed all the information before coming into the room with us, paying special attention to his letter. Our normal 15-minute appointment took an hour and 15 minutes. Tough discussions were had and tough decisions were made.
The most drastic change is Little Man is pulled out of school and placed on hospital-homebound effective immediately. This means I will be responsible for most of his schooling, but the district will be responsible for sending a teacher out to oversee it. I'm not sure exactly how this works as I am very anti-homeschool (hence the never say never title), but he cannot take one more day in his current placement.
Over the next couple of months he will undergo more testing, specifically redoing the psychoacademic testing he had done two years ago (the developmental ped is calling in a personal favor to have this redone) as he has not made the progress they expected and are highly suspicious of a degeneration process (at worst) or confirmation of no progress (at best). Once they have those results they will be pushing to make an exception and the psychiatrist will be calling in a personal favor to get him into another neurologist or a neuropsychiatrist as they are certain there is an underlying medical process causing these issues and we desperately need to find it. They also once again confirmed his seizures even though we don't outwardly see them they seem to be affecting his brain and learning.
When we finally have all that information we will do what it takes to get him into the proper educational placement. One where he can learn, but is not stressed to his breaking point. Obviously this is a huge change, but I am desperately hoping this will give me back my little boy who was so stable, interactive and happy over the summer.
This year school has been hell for my little sweetie. He's in a self-contained special ed class (meaning only special ed kids) and still....failing. This is the first year he's ever really noticed his grades and what he sees is depressing. The biggest lesson he's learned? Work your hardest so you can still get an F. Ouch. His IEP meeting was a disaster almost a month ago with such phrases as "he needs to get used to failing" and "we're making all the accommodations and modifications possible, there's nothing more we can do" and "if we give him academic work on his level then you're (meaning me) giving up on him." Despite losing progress in both math and reading, they insisted on frustrating him with work he can't yet attain and then punishing him when he didn't complete it on time.
As his frustrations at school have grown, his mental state has declined. Drastically. In a kid who already has a fragile emotional state due to many factors, this sent him over the edge. He started having visual and auditory hallucinations, lost tolerance for things such as Beans having the television on, lost interest in his toys and started wetting the bed again. Aggressive behavior we haven't seen in a very long time came back, emotional swings from laughing to hysterics and back again in moments. In short, I feel like my son is being sucked away a little at a time.
Our only hope was today's appointment with his psychiatrist and developmental pediatrician. I have been pleading for the past month that they would have some answer. I got all the paperwork together - his IEP, samples of classroom work, videos of him doing his best to do his homework, my list of his current issues and begging for help from the school, and perhaps most important of all - a letter Little Man himself dictated to his doctors. While the contents of the letter are private, the insight it provided into the frustration and hurt my little guy has been going through is shocking.
Today we finally, finally got help. These doctors know Little Man very well and their care for him is quite evident. They reviewed all the information before coming into the room with us, paying special attention to his letter. Our normal 15-minute appointment took an hour and 15 minutes. Tough discussions were had and tough decisions were made.
The most drastic change is Little Man is pulled out of school and placed on hospital-homebound effective immediately. This means I will be responsible for most of his schooling, but the district will be responsible for sending a teacher out to oversee it. I'm not sure exactly how this works as I am very anti-homeschool (hence the never say never title), but he cannot take one more day in his current placement.
Over the next couple of months he will undergo more testing, specifically redoing the psychoacademic testing he had done two years ago (the developmental ped is calling in a personal favor to have this redone) as he has not made the progress they expected and are highly suspicious of a degeneration process (at worst) or confirmation of no progress (at best). Once they have those results they will be pushing to make an exception and the psychiatrist will be calling in a personal favor to get him into another neurologist or a neuropsychiatrist as they are certain there is an underlying medical process causing these issues and we desperately need to find it. They also once again confirmed his seizures even though we don't outwardly see them they seem to be affecting his brain and learning.
When we finally have all that information we will do what it takes to get him into the proper educational placement. One where he can learn, but is not stressed to his breaking point. Obviously this is a huge change, but I am desperately hoping this will give me back my little boy who was so stable, interactive and happy over the summer.
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