Friday, January 29, 2010
Never Thought I'd See The Day...
I heard a bunch of jabbering going on in the living room and figured Eric saw something out the window. Then I looked closer and saw him with a toy phone that we've had for years. Jon must have dug it up from the toy box. Then I seen the handset to Eric's ear and he was jabbering away. I honestly don't know what he was saying or who he was talking to. He was too busy talking to tell me that :-D I run to get the camera then I heard him say bye and hung up. Then he saw me with the camera so of course he wouldn't pick it up and talk again. He just held the toy and gave me a stunned look. SOMEBODY taught him how a phone works. It maybe could be me, but I'm really not a phone kind of girl. Talking on the phone makes me nervous and I try to avoid it if I can. I'll gladly get on the phone if it means talking to Eric, or any of my sons for that matter! :-) The pretend play I've been seeing from Eric is beyond amazing!!! He is understanding what happens and how the world works. He still has a quite a way to go and his verbal communication needs to expand and improve to have real conversations. But this is so full of HOPE! All this hard work is paying off. Eric always seems to pick the days that I really need something to cheer me up to do things like this. He really knows how to make my day. I could only get the one picture with him holding the toy phone with that look on his face since he wouldn't do it any more once he seen the camera. So you'll have to take my word for the rest, but that's easy enough to do.
Thursday, January 28, 2010
One step closer
Nobody said he had to be happy about it...He's holding the spoon with the applesauce, now to slowly guide it to his mouth. I got 2 notes from school that he tried vanilla pudding. A $1 snack pack was bought. So far it's a no go at home, but there is a little less resistance than with the applesauce. He's been cooperating better lately. He fights a lot more for me than he does the therapists. I've also found cutting the CIB down has been much easier than I thought it would be. He's been drinking pediasure, yogurt,babyfood and milk mixes and fruit juice. He's still allowed one CIB. Again, there was resistance at first but now this is satisfying him. In April we will see the results of the blood tests and his weight and know whether this is working. The hardest part of all of this is dealing with the resistance, crying, tantrums and everything else that comes with this. In order to help him, the therapists and I need for him to comply. This isn't about making him happy. We try to make this as fun and pleasant as possible, but we can't give in. For me this is much harder. He gives me a real hard time where with the therapists he's good. We'll get there, just keep doing what we are.
Jon's evals
As long as everything goes as planned and everyone is there that's supposed to be there here is the new schedule:
Feb. 18 appointment #1 with psychologist (which was supposed to be today, but he left by the time we got there!)
March 24 testing with psychologist
March 25 appointment with developmental pediatrician
April 15 eval with speech language pathologist
After all of that is a team meeting which for the last 2 kids was quite useless. The reports will help if we need to go to the neuropsychologist for the state approved testing for an official autism diagnosis. Tomorrow is the one year mark from when Andy got that diagnosis. We shall see what this summer and fall bring for Jon.
Feb. 18 appointment #1 with psychologist (which was supposed to be today, but he left by the time we got there!)
March 24 testing with psychologist
March 25 appointment with developmental pediatrician
April 15 eval with speech language pathologist
After all of that is a team meeting which for the last 2 kids was quite useless. The reports will help if we need to go to the neuropsychologist for the state approved testing for an official autism diagnosis. Tomorrow is the one year mark from when Andy got that diagnosis. We shall see what this summer and fall bring for Jon.
Saturday, January 9, 2010
So Cool to See What They Really Understand
Maybe I'm making too big of a deal over this. But this is the first time I ever seen any of my kids do something like this. Plus I was really in a crappy mood all day and this was really the bright spot for me. I went upstairs and saw Eric with a Little People fireman and this toy safari car. He was "walking" this figurine around. Then I seen him open the door to the toy truck. He then put the Little People guy in the seat, closed the door and they took off. He pushed it for a while, then repeat. This is the first time I've ever seen anything resembling pretend play from any of these boys. Yes, this is simple but it was so cool to see he was getting this concept. Just like when I seen him playing a car racing game he was stopping at a red light. Ok, that is not good for a race but he knew that red light means stop.
Of course when I try to get pictures of him he don't do as much and needs more prompting. I was able to get a couple with him putting the guy in the truck. He was really having fun with this. That was so nice to see.
Of course when I try to get pictures of him he don't do as much and needs more prompting. I was able to get a couple with him putting the guy in the truck. He was really having fun with this. That was so nice to see.
Friday, January 8, 2010
Andy's Time is Coming
His recertification for the state funding waiver is Jan. 20. This is to determine if he still qualifies for these services. I see no problem with that. The county caseworker told me his funding should be in next month and he will start therapy in late Feb to early March. Yes, it's going to be very busy here but Andy really needs all the help he can get. I'm glad this can come earlier for him than it did Eric.
Wednesday, January 6, 2010
Feeding Clinic Lab Updates
I'm going to start with the good news. My main worries about Eric have been settled. The diabetes concerns have been put to rest thank God. All his labs came out good, except that his Vitamin A levels are way too high.
At first I'm thinking, what's the big deal? Like anything in life, too much is no good. If nothing is done about this all this Vitamin A could be harmful to his liver. The Carnation Instant Breakfast he drinks that provides most of his calories an nutrients is LOADED with Vitamin A! Of course the milk has it too. He will drink fruit juice and water, but the only solid food he will eat is Cheerios. So we are going to have to get creative to make up for what he is losing from the CIB. He is now allowed only 1 packet a day. He will be getting more juice (diluted) and water, and I will have to mix baby food (no orange)in the milk he does drink and flavor it. The nutritionist is looking for a vitamin supplement without Vitamin A that I could crush and put in his drink. He may have to go back on pediasure, at least 1 a day. From here we really have to start pushing the spoon. The GI doctor wants more blood work done in 3 months to check the Vitamin A levels and his liver function. So far his liver function is fine, but this can't go on like this according to what I heard today. The drinks I already have to make up for him are something else. Here is the plan as we went before this phone call with how his liquid nutrion was mixed, cheerios as he wants them are included:
Breakfast 7 oz milk 1 pkg CIB 4 oz yogurt and 1 tsp corn or canola oil
School 7 oz milk 1 pkg CIB
After School
7 oz milk, 1/2 pkg CIB with 1 jar of baby food fruit or green vegetable and 1 tsp corn or canola oil (he got 2 of these)
diluted fruit juice in between.
Yummy stuff hey? Now we have to cut the CIB. Maybe with adding the pediasure this won't be so nasty? What I wouldn't give for this poor boy to be able to eat normally right now. He don't know what he's missing. It's such a slow process in getting him to tolerate the simplest things. They are concerned about weight loss, so we have to make up for this. This is going to be interesting...
At first I'm thinking, what's the big deal? Like anything in life, too much is no good. If nothing is done about this all this Vitamin A could be harmful to his liver. The Carnation Instant Breakfast he drinks that provides most of his calories an nutrients is LOADED with Vitamin A! Of course the milk has it too. He will drink fruit juice and water, but the only solid food he will eat is Cheerios. So we are going to have to get creative to make up for what he is losing from the CIB. He is now allowed only 1 packet a day. He will be getting more juice (diluted) and water, and I will have to mix baby food (no orange)in the milk he does drink and flavor it. The nutritionist is looking for a vitamin supplement without Vitamin A that I could crush and put in his drink. He may have to go back on pediasure, at least 1 a day. From here we really have to start pushing the spoon. The GI doctor wants more blood work done in 3 months to check the Vitamin A levels and his liver function. So far his liver function is fine, but this can't go on like this according to what I heard today. The drinks I already have to make up for him are something else. Here is the plan as we went before this phone call with how his liquid nutrion was mixed, cheerios as he wants them are included:
Breakfast 7 oz milk 1 pkg CIB 4 oz yogurt and 1 tsp corn or canola oil
School 7 oz milk 1 pkg CIB
After School
7 oz milk, 1/2 pkg CIB with 1 jar of baby food fruit or green vegetable and 1 tsp corn or canola oil (he got 2 of these)
diluted fruit juice in between.
Yummy stuff hey? Now we have to cut the CIB. Maybe with adding the pediasure this won't be so nasty? What I wouldn't give for this poor boy to be able to eat normally right now. He don't know what he's missing. It's such a slow process in getting him to tolerate the simplest things. They are concerned about weight loss, so we have to make up for this. This is going to be interesting...
Eric Therapy and Other Updates
During the holiday break Eric's therapy was ramped up. There were days where he had 3 therapists coming and 8 hours of therapy. Some days he handled this better than others. That's a lot of work for a 7 year old child. I had big plans of finishing up a few things we are so close on since we had 2 weeks. None of it came to be. Stuff happened. Life happened. That's ok, we will get back on track.
Verbally, Eric continues to amaze me. He's become a parrot. Repeats a lot of what I say. My favorite is "down Jon Jon" when his baby brother is climbing. When I was doing his hair cut "Please stop!" When trying to zip his jacket "let go!". Turning on the water to wash his hands "Too cold!" This is just a few examples. They are now teaching him how personal information such as phone number, address, names of everyone in the family (meaning my actual name) and how to respond to those requests. He's already mastered his first, middle and last name. He can identify his brothers, but sometimes calls Andy Jon Jon, although I think he knows the difference, it's just more fun to say :-) He can spell his first and last name also. While on the vantage I've heard him spell other simple words like ball, car, dog, red, ect. To answer the next question, yes he can read. I have no idea at what level, but they, and I have given him various preschool books and he's been able to follow with his finger and read most of the words. You wouldn't think it by looking at him. It goes to show how much they really know and understand, but just can't effectively communicate.
There is a wonderful line therapist working with Eric that I would love to keep here at home with me. She has been working with him on dealing with emotions and expressing them, sharing and turn taking with his brothers. She is teaching him how to breathe to calm down and deal with stress and anxiety. He is now learning to attach words to his emotions. So instead of crying, throwing stuff, stomping, ect we are asking him if he is mad and keep on him until he expresses it in words. When he needs to blow off steam we let him bounce on the exercise ball, or squeeze him really tight. At the end of the session Eric wants the therapist gone, like right that second. This therapist hangs around, in his sight until he calms himself down. It works, eventually. Eric has been asking for hugs for a while now, and knows what the word means. Before he was just saying it, leaning into me waiting for me to hug him. Last night he squeezed me back. That was the most awesome feeling! I was crying from that one. He is now letting me initiate the hugs while before it was on his terms only.
The feeding and the cup, that's more difficult. We progress and get so close, but can't finish it off. We will get there. He is finally decided to sit on the toilet yesterday and went, so hopefully we can make up for lost ground on that.
Andy is doing much better with going back to school than I thought he would. He's had some difficulties with behavior and coping with the enviornment there for the last couple of months. He seemed much happier at home, at least for the first week of vacation. So far he's been happy to go on the bus and there have been no reports of any problems. His recertification for elegibility for the waiver will be this month. As far as I know, he is still on track to get the funding for his in home therapy in March. I will find out more once we have the recertification meeting. I'm just waiting for her to call back to schedule that. I'm also filling out paperwork for him to be evaluated at the feeding clinic.
Jon is a very busy, active little boy. He climbs EVERYTHING! The boy has no fear. I've been hearing words come out of his little mouth, but they are scattered and mixed in with a lot of jibberish. This looks promising, compared to either of his brothers at this age. But from the last I've heard he is still VERY delayed, like at the early infant to one year range. He has progressed with the occupational therapist with the small motor stuff. His play skills are still behind, and it's really hard to see where he is cognitively. I'm starting to notice many more oral and auditory sensory issues with him. He always wants to chew the velcro, usually on shoes or on his or Eric's coat. He's getting pickier about food. He really craves bouncing, swinging and rocking motions. Ordinary sounds like opening a cereal box or bag of chips, the vacuum, someone talking even a little too loud (not yelling), or coughing will scare him and he is a screaming mess for a while. I will admit I have auditory sensory issues myself, but not to this extent. His speech and occupational therapist will discuss their evals with me next week and the 6 month IFSP meeting is January 19th. We shall see what happens there. I am also trying to track down all the paperwork I filled out for the Child Development Center at Children's Hospital so he can get his first eval there. Still waiting for a call back from them too. At this point I'm ready for anything. We've survived everything thrown at us already.
Verbally, Eric continues to amaze me. He's become a parrot. Repeats a lot of what I say. My favorite is "down Jon Jon" when his baby brother is climbing. When I was doing his hair cut "Please stop!" When trying to zip his jacket "let go!". Turning on the water to wash his hands "Too cold!" This is just a few examples. They are now teaching him how personal information such as phone number, address, names of everyone in the family (meaning my actual name) and how to respond to those requests. He's already mastered his first, middle and last name. He can identify his brothers, but sometimes calls Andy Jon Jon, although I think he knows the difference, it's just more fun to say :-) He can spell his first and last name also. While on the vantage I've heard him spell other simple words like ball, car, dog, red, ect. To answer the next question, yes he can read. I have no idea at what level, but they, and I have given him various preschool books and he's been able to follow with his finger and read most of the words. You wouldn't think it by looking at him. It goes to show how much they really know and understand, but just can't effectively communicate.
There is a wonderful line therapist working with Eric that I would love to keep here at home with me. She has been working with him on dealing with emotions and expressing them, sharing and turn taking with his brothers. She is teaching him how to breathe to calm down and deal with stress and anxiety. He is now learning to attach words to his emotions. So instead of crying, throwing stuff, stomping, ect we are asking him if he is mad and keep on him until he expresses it in words. When he needs to blow off steam we let him bounce on the exercise ball, or squeeze him really tight. At the end of the session Eric wants the therapist gone, like right that second. This therapist hangs around, in his sight until he calms himself down. It works, eventually. Eric has been asking for hugs for a while now, and knows what the word means. Before he was just saying it, leaning into me waiting for me to hug him. Last night he squeezed me back. That was the most awesome feeling! I was crying from that one. He is now letting me initiate the hugs while before it was on his terms only.
The feeding and the cup, that's more difficult. We progress and get so close, but can't finish it off. We will get there. He is finally decided to sit on the toilet yesterday and went, so hopefully we can make up for lost ground on that.
Andy is doing much better with going back to school than I thought he would. He's had some difficulties with behavior and coping with the enviornment there for the last couple of months. He seemed much happier at home, at least for the first week of vacation. So far he's been happy to go on the bus and there have been no reports of any problems. His recertification for elegibility for the waiver will be this month. As far as I know, he is still on track to get the funding for his in home therapy in March. I will find out more once we have the recertification meeting. I'm just waiting for her to call back to schedule that. I'm also filling out paperwork for him to be evaluated at the feeding clinic.
Jon is a very busy, active little boy. He climbs EVERYTHING! The boy has no fear. I've been hearing words come out of his little mouth, but they are scattered and mixed in with a lot of jibberish. This looks promising, compared to either of his brothers at this age. But from the last I've heard he is still VERY delayed, like at the early infant to one year range. He has progressed with the occupational therapist with the small motor stuff. His play skills are still behind, and it's really hard to see where he is cognitively. I'm starting to notice many more oral and auditory sensory issues with him. He always wants to chew the velcro, usually on shoes or on his or Eric's coat. He's getting pickier about food. He really craves bouncing, swinging and rocking motions. Ordinary sounds like opening a cereal box or bag of chips, the vacuum, someone talking even a little too loud (not yelling), or coughing will scare him and he is a screaming mess for a while. I will admit I have auditory sensory issues myself, but not to this extent. His speech and occupational therapist will discuss their evals with me next week and the 6 month IFSP meeting is January 19th. We shall see what happens there. I am also trying to track down all the paperwork I filled out for the Child Development Center at Children's Hospital so he can get his first eval there. Still waiting for a call back from them too. At this point I'm ready for anything. We've survived everything thrown at us already.
Tuesday, January 5, 2010
Stand
I LOVE this song. It so speaks to me with what I've had to face with the boys. This is a video with the lyrics of the song Stand by Rascal Flatts
Last month I was bent way past breaking. I could take no more. I am now ready to Stand!
Last month I was bent way past breaking. I could take no more. I am now ready to Stand!
Eric and Andy With the Vantage
The Vantage Lite, the electronic communication device Eric uses, is used during school and during therapy. Eric took much more interest in it while he was on a trial of one at school, now that he has his own not so much. He's learned to say so much verbally now, but this machine did help give him a jump start. Andy is using a very simple device like this at school, and may very well get his own Vantage Lite or something similar in time. He loves the machine and I think this would really benefit him.
Andy is having a good ol' time learning how this thing works. He's figured out how to use a computer quite well, so I'm thinking he will be better than me on this thing in no time.
Here's what he was saying. We'll get there...
Eric working with it during one of his therapy sessions. They had him typing his name on there. He can spell his first name quite easily, his last name he needed some help. This machine can do so much! It can talk for you, you can type on it, you can go on the Internet with it and use it as a computer. It's amazing. I went for a 6 hour training on this last summer and I honestly don't remember much of any of it! I'm very surprised how fast these boys are picking up on this.
Andy is having a good ol' time learning how this thing works. He's figured out how to use a computer quite well, so I'm thinking he will be better than me on this thing in no time.
Here's what he was saying. We'll get there...
Eric working with it during one of his therapy sessions. They had him typing his name on there. He can spell his first name quite easily, his last name he needed some help. This machine can do so much! It can talk for you, you can type on it, you can go on the Internet with it and use it as a computer. It's amazing. I went for a 6 hour training on this last summer and I honestly don't remember much of any of it! I'm very surprised how fast these boys are picking up on this.
Monday, January 4, 2010
What Won't Entertain My Kids...
Any time Andy sees the popcorn machine he comes running. He LOVES to watch this go. To him this is the best show on earth! Guess I'll be eating a lot of popcorn...
Once it's done he goes into the bowl, grabs some and tries to feed it to me! So cute :-) I wish he would eat it himself, but I'll take touching it!
Scroll down to the bottom of the blog
I found this poem that is just awesome. The only way I could get it is as a large graphic. The bottom was the only place it would fit.
Feeding Clinic
This is another post I've been putting off. But it does bring up some important issues and someone may be interested so I'm writing this. This is not a Rah Rah post, so if you want that please skip this one. This is also very long. With that, here goes...
The appointment was on Dec. 23rd early morning. Just what I want to do on a day in the middle of Christmas vacation, get up at 6 am and go out into the cold to go to a hospital for a dr. appointment. The senior therapist from the ABA organization also attended this appointment. I made up 2 straw cups of CIB for this appointment, but of course forgot to pick them up and bring them with. There was very little wait this time. Eric did AWESOME with standing on the scale to get his weight. The height, that's another story. They have this thing that comes down on the child's head and he HATES that. Not that I blame him, but they are careful bud. This time they insisted on getting it so they would have to do it in the room by standing him at the wall, making a mark and using a tape measure. We get settled in a room, and the nurse comes in soon after. She asks the usual questions. I bring up my concerns about how much he is drinking, and urinating and the fact that his urine is very dark and smells like sugar. I don't want to be paranoid, but his dad is a type 1 diabetic, so it's a possible concern. Nurse is concerned, along with the dietician. He gained 2 lbs since the summer, but they were not happy with that. His weight is not keeping up with his height, and for how much he is consuming they would like him to be gaining more. They try to get a hold of the GI doctor that was there today so labs can be ordered. Gee, that's something to look forward to!
The psychologist comes in and is filled in on all the medical and nutritional information. Then she talks to me about how he's been doing with the cups, spoons ect. I tell her how I get to a point and no progress is made, and how he don't drink enough from the straw cup to keep properly hydrated and healthy. Then she asked the senior therapist what she was doing, and how she thought he was progressing. Then she asked how long that the therapy organization would be working with him, we told her 3 years. Then she asked the senior if any long range planning has been discussed for Eric. Huh? She then informed us that Eric most likely won't be able to function on his own as an adult, and the bigger he gets, the harder it's going to be to handle him. Then asked if we ever talked about or looked into a residential placement for him. Ummmm...OK. That was the LAST thing I was expecting to be brought up for discussion. Nice thing to talk about right before Christmas! Now I understand that Eric may not be able to live independently as an adult, and that he may need a lot of help. I'm ready if he has to live with me as long as I'm around, or that a residential facility may be necessary in time. The services in this state are great, but I have no idea what's going to happen once they turn 18. I'm not in denial, and know that in time these things may need to be addressed. But to bring it up like this? Eric has made great improvements since starting the in home ABA therapy. Nobody knows what the future will hold. He may get to a point where he may need minimal help, or that I can care for him as long as needed. Right; now I'm his mom, I am caring for him and he is thriving. Yes, it's slow progress but he's much better off than he was before. The senior said this stuff was discussed during year 3 of the intensive phase therapy (at the end). God this conversation upset me. It came across like I can't take proper care of him. This is not a subject to be taken lightly, just not something I wanted to deal with right at that time.
On to the lab. The senior therapist was staying with me and Eric through all of this, which was very nice of her and very appreciated. We had to get both blood and a urine sample from him. By this time we tried a bag, but he fought that so hard and would not let us put it on. Then we sat in the bathroom for about 15 min trying to see if he would go in a cup, didn't happen. So we got a hat, cup and order to try to do this at home. Anyhow, we sign in. The therapist forgot something at the GI clinic, so she had to go back there. Of course while she was gone we were called back for the blood draw. There was one lady there and she asked if it would be easiest if I held him in the chair or if he laid on a table. I said in my lap. Eric plopped down on the ground and dead weighted himself. He wasn't moving. The lab worker called in 2 other people. They were able to lift him on to me and told me to hug him hard and make sure his chest didn't move. There was another person holding his head and other arm, one was holding his legs. Yes, I thought this was a bit rough and exstreame, especially when they picked him up. Yes, this had to be done, but this was very hard to witness my child go through this, and to have to assist in it. They took 6 tubes of blood, lots of tests. You would think they would just tape some gauze on the spot or put on a bandaid after, of course not. This is what they used.
He would not let me anywhere near that for days. I was risking injury if I did. I didn't want to use a scissors because he moves and fights so much, and the location. This was the result.
It was way too tight on him and he may have had a reaction to it. Thankfully this is healing well now.
We are still waiting on results of the tests, they told us 2 weeks for everything comes back unless something is seriously wrong. No news is good news I say. But I keep praying. The urine sample, we're still working on that. He won't sit on the toilet with the hat on it. If I can get some time I'll go in with the cup and try to catch him. We have now regressed to peeing and pooping on the floor, and it's a struggle to get him to even sit on the toilet now. Maybe this will happen, some day.
The appointment was at 8:30 am, we got home a little before noon. I left my keys at the GI clinic and realized it when we were in the parking structure. Having to go back in and to the lab, pharmacy and GI clinic to get my keys did not make Eric happy. Don't blame him, the poor kid already went through enough. This was not an enjoyable experience. If you read all the way through this, God bless you. I'll post some more fun and upbeat posts on here tonight if I get time, or tomorrow for sure.
The appointment was on Dec. 23rd early morning. Just what I want to do on a day in the middle of Christmas vacation, get up at 6 am and go out into the cold to go to a hospital for a dr. appointment. The senior therapist from the ABA organization also attended this appointment. I made up 2 straw cups of CIB for this appointment, but of course forgot to pick them up and bring them with. There was very little wait this time. Eric did AWESOME with standing on the scale to get his weight. The height, that's another story. They have this thing that comes down on the child's head and he HATES that. Not that I blame him, but they are careful bud. This time they insisted on getting it so they would have to do it in the room by standing him at the wall, making a mark and using a tape measure. We get settled in a room, and the nurse comes in soon after. She asks the usual questions. I bring up my concerns about how much he is drinking, and urinating and the fact that his urine is very dark and smells like sugar. I don't want to be paranoid, but his dad is a type 1 diabetic, so it's a possible concern. Nurse is concerned, along with the dietician. He gained 2 lbs since the summer, but they were not happy with that. His weight is not keeping up with his height, and for how much he is consuming they would like him to be gaining more. They try to get a hold of the GI doctor that was there today so labs can be ordered. Gee, that's something to look forward to!
The psychologist comes in and is filled in on all the medical and nutritional information. Then she talks to me about how he's been doing with the cups, spoons ect. I tell her how I get to a point and no progress is made, and how he don't drink enough from the straw cup to keep properly hydrated and healthy. Then she asked the senior therapist what she was doing, and how she thought he was progressing. Then she asked how long that the therapy organization would be working with him, we told her 3 years. Then she asked the senior if any long range planning has been discussed for Eric. Huh? She then informed us that Eric most likely won't be able to function on his own as an adult, and the bigger he gets, the harder it's going to be to handle him. Then asked if we ever talked about or looked into a residential placement for him. Ummmm...OK. That was the LAST thing I was expecting to be brought up for discussion. Nice thing to talk about right before Christmas! Now I understand that Eric may not be able to live independently as an adult, and that he may need a lot of help. I'm ready if he has to live with me as long as I'm around, or that a residential facility may be necessary in time. The services in this state are great, but I have no idea what's going to happen once they turn 18. I'm not in denial, and know that in time these things may need to be addressed. But to bring it up like this? Eric has made great improvements since starting the in home ABA therapy. Nobody knows what the future will hold. He may get to a point where he may need minimal help, or that I can care for him as long as needed. Right; now I'm his mom, I am caring for him and he is thriving. Yes, it's slow progress but he's much better off than he was before. The senior said this stuff was discussed during year 3 of the intensive phase therapy (at the end). God this conversation upset me. It came across like I can't take proper care of him. This is not a subject to be taken lightly, just not something I wanted to deal with right at that time.
On to the lab. The senior therapist was staying with me and Eric through all of this, which was very nice of her and very appreciated. We had to get both blood and a urine sample from him. By this time we tried a bag, but he fought that so hard and would not let us put it on. Then we sat in the bathroom for about 15 min trying to see if he would go in a cup, didn't happen. So we got a hat, cup and order to try to do this at home. Anyhow, we sign in. The therapist forgot something at the GI clinic, so she had to go back there. Of course while she was gone we were called back for the blood draw. There was one lady there and she asked if it would be easiest if I held him in the chair or if he laid on a table. I said in my lap. Eric plopped down on the ground and dead weighted himself. He wasn't moving. The lab worker called in 2 other people. They were able to lift him on to me and told me to hug him hard and make sure his chest didn't move. There was another person holding his head and other arm, one was holding his legs. Yes, I thought this was a bit rough and exstreame, especially when they picked him up. Yes, this had to be done, but this was very hard to witness my child go through this, and to have to assist in it. They took 6 tubes of blood, lots of tests. You would think they would just tape some gauze on the spot or put on a bandaid after, of course not. This is what they used.
He would not let me anywhere near that for days. I was risking injury if I did. I didn't want to use a scissors because he moves and fights so much, and the location. This was the result.
It was way too tight on him and he may have had a reaction to it. Thankfully this is healing well now.
We are still waiting on results of the tests, they told us 2 weeks for everything comes back unless something is seriously wrong. No news is good news I say. But I keep praying. The urine sample, we're still working on that. He won't sit on the toilet with the hat on it. If I can get some time I'll go in with the cup and try to catch him. We have now regressed to peeing and pooping on the floor, and it's a struggle to get him to even sit on the toilet now. Maybe this will happen, some day.
The appointment was at 8:30 am, we got home a little before noon. I left my keys at the GI clinic and realized it when we were in the parking structure. Having to go back in and to the lab, pharmacy and GI clinic to get my keys did not make Eric happy. Don't blame him, the poor kid already went through enough. This was not an enjoyable experience. If you read all the way through this, God bless you. I'll post some more fun and upbeat posts on here tonight if I get time, or tomorrow for sure.
Friday, January 1, 2010
Christmas, the Real Story
Yes, I know I'm a little late here. It really was awesome that the improvements Eric has made since starting the therapy really came out. All the boys did have fun with their new toys once they were opened, for a little while. There were happy times. With that said, this blog focuses on autism. Autism was definitely present on Christmas. For a while I had a hard time deciding how I was going to present this. Eventually I decided just to tell it as it is, with my real feelings and all. I'm thinking I owe that to anyone who is reading that wants to know about how autism affects our families life. So here it is, the real deal...
At Grandma and Grandpa's house. Jon playing with the ornaments as he always does. It looks cute, but lets just say this didn't go over well.
Eric chilling out and making the most of it. Thankfully he didn't go into meltdown mode. He's learned to cope with this type of thing quite nicely. Visiting other people's houses is hard. My guys have a hard time being out of their familiar surroundings. There are different people around, what they can do at home they can't do at other peoples homes, routines are off, we had some surprises coming in and they like to know what is going to happen. There are questions about why we do certain things, why they won't eat with everyone, why they don't show excitement with opening and receiving gifts. No, it's not because they are ungrateful and spoiled, it's because they are confused and can't express themselves. It is not understood why these kids are crying, cranky, tired and bored unlike the image of happy children we all think of at Christmas. We learn as we go, so we do this. The learning process is slow and can be painful but we will get there someday.
Christmas morning. Looks pretty doesn't it? This was one of the reasons I was up all night (along with my kids waking up and other things) I'm hoping everyone is taking a good amount of time to look at this, just as I did. If you want Christmasy themed photos, this is the best your gonna get. This looked so pretty and inviting to ME. When my sons woke up on Christmas morning, this didn't even warrant a LOOK from them. They wanted the TV on and to eat. This was just another day for them. Any attempt to draw attention to the wrapped presents failed. They couldn't care less. Finally I gave Jon a present and tried to help him unwrap it. He cried, pushed it away and hid under his blanket. Yes, he is 2 years old and he is young yet, but I expected some interest. On to Eric, I thought he was a sure bet to want to try to open a present. I picked out one I knew he would love, and brought it to him. He pushed it away, whined and continued to watch TV. I turned off the TV, a big tantrum from all 3 resulted from that. I started tearing the paper for Eric, he knocked the present out of my hand and stomped off. Andy, he wouldn't even look or touch the present. Again, more crying and tantrums. He didn't understand. There was no use in prolonging this so I tore the paper off of all the gifts that I wrapped. Just how everyone dreams of Christmas morning, as a child or as a parent. Nah, didn't think so. Disappointing, yeah for sure. This was hard.
Once they were unwrapped and Eric saw all his toy trucks, and Andy saw the bottles of bubbles that came with the bubble machine, then there was some interest.
He said "open please" and "help please mommy here". This year he was polite to boot! Yes, he was still persistent though! Too awesome!
This makes it all worthwhile.
No, this is not the set to the Lawrence Welk Show. Andy's bubble machine broke a few months ago and thankfully I was able to find one (things like this are seasonal items apparently :-( ) This was the one thing that made them happy in each other's company. It's nice knowing what they love and what will make them happy :-)
The ball popper was very popular among all. Too bad I can't find any of the balls anymore. Eric took this and closed himself in his room to play with it so brothers couldn't get it and I have no idea where the balls were hidden.
Eric has some competition for this fire engine. Andy loved it. He was actually playing with it properly, which was a very pleasant surprise to me :-)
The sensory balls and the bowling set seemed to be Jon's favorites. He was doing quite well with that bowling set too, he seemed to get the concept.
Yes, they had fun. Of course there were fights, stuff got broken, parts went missing, kids got overtired and cranky. I have to say that's typical for ANY children, young children in particular. So that part was normal and expected. Maybe my expectations were not totally realistic. I was very impressed with how Eric was talking, interacted and handled himself with the stress and change in routine. He's made big improvements there. It was nice seeing some toys being played with properly. Really, this went well all in all, for them especially. I do wish that we could participate in various activities with more ease. The total lack of interest, understanding and excitement on Christmas morning was what really got to me. But those are my issues. What counts is that the BOYS had a good time, which they did.
At Grandma and Grandpa's house. Jon playing with the ornaments as he always does. It looks cute, but lets just say this didn't go over well.
Eric chilling out and making the most of it. Thankfully he didn't go into meltdown mode. He's learned to cope with this type of thing quite nicely. Visiting other people's houses is hard. My guys have a hard time being out of their familiar surroundings. There are different people around, what they can do at home they can't do at other peoples homes, routines are off, we had some surprises coming in and they like to know what is going to happen. There are questions about why we do certain things, why they won't eat with everyone, why they don't show excitement with opening and receiving gifts. No, it's not because they are ungrateful and spoiled, it's because they are confused and can't express themselves. It is not understood why these kids are crying, cranky, tired and bored unlike the image of happy children we all think of at Christmas. We learn as we go, so we do this. The learning process is slow and can be painful but we will get there someday.
Christmas morning. Looks pretty doesn't it? This was one of the reasons I was up all night (along with my kids waking up and other things) I'm hoping everyone is taking a good amount of time to look at this, just as I did. If you want Christmasy themed photos, this is the best your gonna get. This looked so pretty and inviting to ME. When my sons woke up on Christmas morning, this didn't even warrant a LOOK from them. They wanted the TV on and to eat. This was just another day for them. Any attempt to draw attention to the wrapped presents failed. They couldn't care less. Finally I gave Jon a present and tried to help him unwrap it. He cried, pushed it away and hid under his blanket. Yes, he is 2 years old and he is young yet, but I expected some interest. On to Eric, I thought he was a sure bet to want to try to open a present. I picked out one I knew he would love, and brought it to him. He pushed it away, whined and continued to watch TV. I turned off the TV, a big tantrum from all 3 resulted from that. I started tearing the paper for Eric, he knocked the present out of my hand and stomped off. Andy, he wouldn't even look or touch the present. Again, more crying and tantrums. He didn't understand. There was no use in prolonging this so I tore the paper off of all the gifts that I wrapped. Just how everyone dreams of Christmas morning, as a child or as a parent. Nah, didn't think so. Disappointing, yeah for sure. This was hard.
Once they were unwrapped and Eric saw all his toy trucks, and Andy saw the bottles of bubbles that came with the bubble machine, then there was some interest.
He said "open please" and "help please mommy here". This year he was polite to boot! Yes, he was still persistent though! Too awesome!
This makes it all worthwhile.
No, this is not the set to the Lawrence Welk Show. Andy's bubble machine broke a few months ago and thankfully I was able to find one (things like this are seasonal items apparently :-( ) This was the one thing that made them happy in each other's company. It's nice knowing what they love and what will make them happy :-)
The ball popper was very popular among all. Too bad I can't find any of the balls anymore. Eric took this and closed himself in his room to play with it so brothers couldn't get it and I have no idea where the balls were hidden.
Eric has some competition for this fire engine. Andy loved it. He was actually playing with it properly, which was a very pleasant surprise to me :-)
The sensory balls and the bowling set seemed to be Jon's favorites. He was doing quite well with that bowling set too, he seemed to get the concept.
Yes, they had fun. Of course there were fights, stuff got broken, parts went missing, kids got overtired and cranky. I have to say that's typical for ANY children, young children in particular. So that part was normal and expected. Maybe my expectations were not totally realistic. I was very impressed with how Eric was talking, interacted and handled himself with the stress and change in routine. He's made big improvements there. It was nice seeing some toys being played with properly. Really, this went well all in all, for them especially. I do wish that we could participate in various activities with more ease. The total lack of interest, understanding and excitement on Christmas morning was what really got to me. But those are my issues. What counts is that the BOYS had a good time, which they did.
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