On this Facebook group I am a part of, I have seen several people talk about a gene mutation(MTHFR) and wondered about getting that tested and where to go. This gene mutation is also linked to depression(mental illness) and so since reading people talk about it, I have been curious since depression is strong on my Mom's side. One day this lady that lived in our old neighborhood emailed me a link to a book that talks about this mutation. She is very big into the essential oils and has cured her self of cancer several times. Before Dylan and Autism, I thought she was a little strange because I was all about doctors knowing what is best for us and they wouldn't do anything to harm us. I still support Doctors but am a bit more weary of some of the stuff now being "born" into the Autism world. I have turned to Chris several times and she has been more than helpful and supportive with choices we have made with Dylan. So when she emailed me this book I decided to read it.
After reading the book I decided to call the Dr that wrote this book because lucky for me, he is in Lindon. He doesn't technically treat Autism patients but was willing to have me come talk to him and see where to go from there. I explained Dylan and the head bonk and told him I am not completely convinced that has nothing to do with this, he responded by saying he is not either! I also mentioned I am nervous to have any more testing on his brain that would have to sedate him because I have read some children have regressed due to anesthetics used. He said they have something they could use that is different and would do no harm there, but he wants to check the genes first. This test he normally runs, he doesn't think Dylan is old enough for so he wants us to do this 23andme genetics test. It is a test that you spit into this vial and then send it in and they come back showing you different genes you have inherited and what they mean and can cause. However, trying to get Dylan to spit into that just might not happen. I thought we could force him by holding his mouth open until enough drool came out(aka: torture him) but then read drool does not work and it has to be full on spit. He has actually been making spit bubbles lately, so who knows maybe he could do it.
You have to spit like 1/2 tsp or something and not eat for half hour prior to collecting the sample, so I don't know that we would be successful. The Dr also told me that I could take this test and that could give him some direction because the mother is always the one that passes this gene down! Not that that is good, but good in the sense that I can do it. He said this gets deep and shows a lot about you and said if I don't mind him looking into my medical well being then he would like me to do it. Of course I don't care what he finds out about me, if it is going to help my son then I am all for it! So I have this test at home but have recently come down with the stomach flu/cold/pink eye combination so I figured it might be better to do it when that is gone. I really could see the depression/mental illness that is in the family being linked to this in a way. But then that is where I get confused because if the Mother passes it on then as far as I know my Mother's Mother side didn't have mental illness but my Mother's Father's side did. So if the Mother carries it on, how did it get to my Mom? I am excited/nervous to see what this reveals about not only me and Dylan but ancestor history as well. Science is really amazing and they have come a long way! Once submitted it takes about 6-8 weeks to get the results, so I can't wait! Hopefully it gives us some more direction too.
One thing I find very interesting is that depending on the mutations you have, there are 2 specific ones he is looking at but could have different combinations, then that determines treatments. So if you have a certain mutation then lets just say that the medication a Dr prescribes most depressed people may actually cause more harm and make them suicidal. If you have a different mutation that same medication may help your symptoms. Or a different set of mutations it may completely wear you out, etc. So if you catch what I am saying if you know the mutation that you have, you can work around it and use different sets of medication or vitamins to help your body function more accurately. He said there are some vitamins out there that they have manipulated for these exact things. So here's to hoping that this really gives us some direction and another path to try!
Thursday, February 25, 2016
Progressing(years behind)!
It's been a bit since I wrote anything, but there hasn't been much to document but then again there has. Day to day I wouldn't say I see a big change but then if I think back I see things. He seems to be trying so much harder to get some words out and we are starting to hear things, not consistently but consistently trying! He was with Rick and Lori one day and came back repeating the word "green" for Rick. When you tell him to say "eat" he smiles and says "EEEEE" but he definitely knows what that means! I was blowing bubbles with him the other day and asked if he wanted more bubbles. He responded by saying, "Bubba Mo" and signing more. He also seems to be signing "more" a lot more often. Brielle has asked him if he wants something and then tells him to say "Please" and he has said "Pee." Rick came and got Dylan since he was up this way and took him home to go swim in the hot tub. When they got into Nephi they stopped at Lori's work to show who he brought home. Dylan wanted Lori to get him out of the truck but when she asked if he was going to go swimming, he said "yeah." So it's coming, slowly but surely.
My parents stopped by the other day and when they went to leave I told him to tell them "bye." Instead of his normal open and close hand wave, he actually did the full on wave moving the wrist back and forth wave. That was a first and I have seen him do it more since then. Like the other day the fence company came to fix our fence that broke due to the wind and as I was talking to them he ran over to the door. I think he wanted me to come get him some food, so he started waving. The guy started interacting with him and waving back and then asked Dylan for a high five. Dylan gave him five. I wanted to jump for joy seeing this interaction and thank the guy at the door, but then he would have thought I was crazy ha ha. To see Dylan actually interacting with a stranger in that way was awesome!
I was thinking last night about things people have mentioned on the Facebook group and they think they go back to where they regressed and progress from there. I have never really given any thought to it, until the "wave" hit me. If you think about it, when most babies begin waving they start with the opening and closing of the hand like Dylan was doing. Then it progresses to the actual wave which for the past few days has been the case, so I think we are safe to say that is his "new wave." So if you go on this theory then yes in this particular motion(the wave) he is at a, we'll just say 1 year old level, but he is progressing on. Then that leads you to realize that the language is also progressing past the "1 year" level and he is trying to piece those sounds together. So if this is what I am thinking we are actually starting to see some progress! It may be a few years behind from where he should be, but PROGRESS is a word I love hearing!
An hour after I wrote this post I got a call from Dylan's teacher. 1. because he was being a little sad/fussy/crying they just aren't sure if he is not feeling good or having a bad day. Since he can't tell them it is the guessing game and they have tried a few things, so wanted to know what I want them to do. Watch him longer or have me pick him up. At the end of the call he was seeming ok and Boston gets out of school in 30 minutes so they are going to watch him and call me at that time to decide if I come grab him or he stays in school. 2. Because they are AMAZED at his progress in the past month or so of his understanding! She said he has made quite the jump in this area and they can not believe the progress! She said they have been working on pictures and asking him to give them a certain object and he is pretty accurate when they do this. AMAZING! She wanted to know if we have noticed this as well? I have always thought his understanding is pretty good but it is a matter of "if" he wants to do what you ask him. I think our opinions differ from each other in this area, but for her to notice a change then obviously it is something to be excited about!
I mentioned we feel he is trying to talk more and she agreed with that, that they are hearing more and more but like I said not consistently. She wonders if he may have a "processing disorder"(she made sure to let me know just a thought but not saying he has it) but if he does she said she has read that it could take thousands of times of doing one thing where for the "typical" person it may take a few times, for it to click, so to speak. Have I mentioned before how much I love this school and the teachers! They really are the ones working their butt off for my little guy and their hard work is paying off!
My parents stopped by the other day and when they went to leave I told him to tell them "bye." Instead of his normal open and close hand wave, he actually did the full on wave moving the wrist back and forth wave. That was a first and I have seen him do it more since then. Like the other day the fence company came to fix our fence that broke due to the wind and as I was talking to them he ran over to the door. I think he wanted me to come get him some food, so he started waving. The guy started interacting with him and waving back and then asked Dylan for a high five. Dylan gave him five. I wanted to jump for joy seeing this interaction and thank the guy at the door, but then he would have thought I was crazy ha ha. To see Dylan actually interacting with a stranger in that way was awesome!
I was thinking last night about things people have mentioned on the Facebook group and they think they go back to where they regressed and progress from there. I have never really given any thought to it, until the "wave" hit me. If you think about it, when most babies begin waving they start with the opening and closing of the hand like Dylan was doing. Then it progresses to the actual wave which for the past few days has been the case, so I think we are safe to say that is his "new wave." So if you go on this theory then yes in this particular motion(the wave) he is at a, we'll just say 1 year old level, but he is progressing on. Then that leads you to realize that the language is also progressing past the "1 year" level and he is trying to piece those sounds together. So if this is what I am thinking we are actually starting to see some progress! It may be a few years behind from where he should be, but PROGRESS is a word I love hearing!
An hour after I wrote this post I got a call from Dylan's teacher. 1. because he was being a little sad/fussy/crying they just aren't sure if he is not feeling good or having a bad day. Since he can't tell them it is the guessing game and they have tried a few things, so wanted to know what I want them to do. Watch him longer or have me pick him up. At the end of the call he was seeming ok and Boston gets out of school in 30 minutes so they are going to watch him and call me at that time to decide if I come grab him or he stays in school. 2. Because they are AMAZED at his progress in the past month or so of his understanding! She said he has made quite the jump in this area and they can not believe the progress! She said they have been working on pictures and asking him to give them a certain object and he is pretty accurate when they do this. AMAZING! She wanted to know if we have noticed this as well? I have always thought his understanding is pretty good but it is a matter of "if" he wants to do what you ask him. I think our opinions differ from each other in this area, but for her to notice a change then obviously it is something to be excited about!
I mentioned we feel he is trying to talk more and she agreed with that, that they are hearing more and more but like I said not consistently. She wonders if he may have a "processing disorder"(she made sure to let me know just a thought but not saying he has it) but if he does she said she has read that it could take thousands of times of doing one thing where for the "typical" person it may take a few times, for it to click, so to speak. Have I mentioned before how much I love this school and the teachers! They really are the ones working their butt off for my little guy and their hard work is paying off!
Thursday, February 4, 2016
Dylan's Drawings
Here are a few of Dylan's artwork projects that were in his backpack the other day. I miss talking to the teacher everyday to really know what these all mean. Like the lines is he doing these on his own or is the teacher guiding him because if they are on his own I am really impressed!
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| I also wonder if they are guiding him on this, which I am sure they are, or if he actually did it on his own. |
Wednesday, February 3, 2016
Attitude on the bus!
Today when I got Dylan off of the bus, the bus driver greeted me by saying, "Somebody is mad at Jo!" It took me a bit to realize what he said and when it sunk in I laughed and asked what he did! He has started to take his shoes off again on the bus and so I guess she asked the teachers how often he does that at school. They looked at her like she was strange and told her that he never takes them off at school. On the way home she decided to be more strict and get him to leave them on and so when he tried to untie them she would tell him "NO!" We all know that Dylan has some "good looks(scowls)" and so she was introduced to those today. She said every time she told him "No" he would stare her down. I can imagine the look he gave her! I laughed and said, "He has some good scowls!" She laughed and said, "He sure does!"
Saturday, January 30, 2016
Swimming in the Snow!
Today was all about Dylan apparently! We woke up to a cold and snowy day, one of the days that would be great to stay home and relax. However, there is no real "relaxing" at this house so we always are looking for something to do to get out of the house, even if it is just go to a store to walk around and spend money on random things! About 10 AM, Dylan found a Little Caesars ad and when he comes across those he decides that is where we are going or he walks around with it most the day.(He actually did the same thing the night before with a Carls Jr ad.) Anyway, he had the Little Caesars ad in hand and led me to the garage door so we could go. I told him we would get out of the house later and we could go there, but they weren't even open yet. He did not like that answer!
I got busy doing other things so I don't know what went on for the next half hour or so, but when I came upstairs Dylan and Brandon was sitting on the couch in the process of putting his swim suit on. Brandon said he was looking at our calendar and came across the picture of Dylan swimming. He said the light bulbs went off and he headed in to grab his swim suit. I laughed and figured he would settle for a good swim in the bathtub because this had happened before, but no. He led me once again to the garage door and was ready to go. I told him it was too cold outside, so he went in and got his shirt that goes with his swim suit and led me to the front door. I then told him he needed his shoes on, so he went and grabbed his shoes! At this point we could not let the little guy down so we told the rest of the kids to get ready because we were going swimming on this cold(30*) snowy(snowed all day) day! At first they thought we were joking but when they realized we were really going they were excited!
Dylan was so patient and waited around for us all to get our swim suits on and couldn't wait to go. I had mine on and went to put clothes on over and he started to panic. I reassured him that we were going but I didn't want to be cold! I had to laugh because as we were walking into Provo Rec Center it was quite cold and the snow was coming down pretty good and the older two had decided to just wear their swimming suits and coat along with flip flops! It's not every day you choose that outfit in the cold. When we left they both regretted the flip flop decision, but luckily I had there actual shoes in the van! We had a great time and Dylan was in heaven and we lasted about an hour! Then he started trying to take his pants and life jacket off so we decided it was a good time to go! Desi gets nervous at these swimming pools because the loud noises and the water buckets that randomly crash down so she didn't enjoy her time as much as she does in Rick and Lori's hot tub, but I think she had fun as well.
We decided to let Dylan's desires dictate the day and instead of Little Caesars we decided to go to Brick Oven. When we first got there Dylan was screaming and throwing little fits right after we got seated. I was nervous it was going to be a disaster. I decided to take him to the bathroom while we waited for the food because for some reason when he swims his body really soaks up the water and I wondered if that may be the problem. Sure enough he had a lot of pee and when we got back he was a completely different person! Today was a good day and the fact that Dylan was the "party planner" made it even better! He seemed to be extremely happy all day, so I hope he understands that we understood what he wanted and went out of our way to make his wishes come true!
I got busy doing other things so I don't know what went on for the next half hour or so, but when I came upstairs Dylan and Brandon was sitting on the couch in the process of putting his swim suit on. Brandon said he was looking at our calendar and came across the picture of Dylan swimming. He said the light bulbs went off and he headed in to grab his swim suit. I laughed and figured he would settle for a good swim in the bathtub because this had happened before, but no. He led me once again to the garage door and was ready to go. I told him it was too cold outside, so he went in and got his shirt that goes with his swim suit and led me to the front door. I then told him he needed his shoes on, so he went and grabbed his shoes! At this point we could not let the little guy down so we told the rest of the kids to get ready because we were going swimming on this cold(30*) snowy(snowed all day) day! At first they thought we were joking but when they realized we were really going they were excited!
Dylan was so patient and waited around for us all to get our swim suits on and couldn't wait to go. I had mine on and went to put clothes on over and he started to panic. I reassured him that we were going but I didn't want to be cold! I had to laugh because as we were walking into Provo Rec Center it was quite cold and the snow was coming down pretty good and the older two had decided to just wear their swimming suits and coat along with flip flops! It's not every day you choose that outfit in the cold. When we left they both regretted the flip flop decision, but luckily I had there actual shoes in the van! We had a great time and Dylan was in heaven and we lasted about an hour! Then he started trying to take his pants and life jacket off so we decided it was a good time to go! Desi gets nervous at these swimming pools because the loud noises and the water buckets that randomly crash down so she didn't enjoy her time as much as she does in Rick and Lori's hot tub, but I think she had fun as well.
We decided to let Dylan's desires dictate the day and instead of Little Caesars we decided to go to Brick Oven. When we first got there Dylan was screaming and throwing little fits right after we got seated. I was nervous it was going to be a disaster. I decided to take him to the bathroom while we waited for the food because for some reason when he swims his body really soaks up the water and I wondered if that may be the problem. Sure enough he had a lot of pee and when we got back he was a completely different person! Today was a good day and the fact that Dylan was the "party planner" made it even better! He seemed to be extremely happy all day, so I hope he understands that we understood what he wanted and went out of our way to make his wishes come true!
Daddy's Glasses and ATEC
Brandon found a new pet peeve of Dylan's today. He was talking to him and had his glasses up on his head so Dylan reached up and put them where they should go, over his eyes. So Brandon did it again and got the same reaction. After several times, Dylan started to get frustrated and when that happens he tends to grab on to you and put tons of pressure on you(for example, grab your face and push his hands hard and clench his jaw). That seems to be a common reaction when you can tell he is stressed out about something. Brandon decided to come and show me and this time we got a few screaming reactions, kind of like saying, "stop with the glasses, it's pissing me off!" This continued throughout the day and every time he noticed the glasses were not where they should be, he would make sure to help Dad get them there! I said maybe he can be an optometrist and he'll be so good at making sure people wear their glasses that he may just randomly show up in places to make sure they are wearing them correctly, ha ha!
On another note, I decided to take the ATEC for fun to see where we were at. I was surprised with my results and asked Brandon to take it to see where he ranked him. I got him at a 62 and Brandon got him at 70, so they were quite a bit different but I had him really high in speech(lower the better) and Brandon had him higher in sociability. I told him I think that was because I was going off some things the teachers have told me he does at school and where I am the one that has talked to them, I may not have relayed that info back to him as good as I should, so that could be a big part of it. No matter what though these were the results prior(my results, for some reason I didn't document Brandons):
February 21, 2015 results:
Speech, Language, Communication: 24
Sociability: 24
Sensory/Cognitive Awareness: 19
Health: 19
Overall Total: 86
September 27, 2015 results:
Speech, Language, Communication: 23
Sociability: 20
Sensory/Cognitive Awareness: 21
Health: 15
Overall Total: 79
So we are looking at a 9-17 point drop in 3 months! I couldn't believe it and was so excited. Here are the results for today:
January 30, 2016 results:
Speech Language, Communication: 24
Sociability: 10
Sensory/Cognitive Awareness:15
Health:13
Overall Total: 62
Brandon didn't have his emailed to him so I don't have his numbers exactly, but I know, like I said above, he was quite a bit lower on speech and higher on sociability. I was shocked when he told me his speech score because I thought I was being a little lenient on some of my answers so for him to be lower in the one area that is our main concern, excited me a bit. Sociability made quite a jump, if you go based on my score, and that is a pretty big deal in "autism world!" He is really starting to see the world around him and that is good! Can you imagine if he starts talking and how quickly this score could go lower and lower!
On another note, I decided to take the ATEC for fun to see where we were at. I was surprised with my results and asked Brandon to take it to see where he ranked him. I got him at a 62 and Brandon got him at 70, so they were quite a bit different but I had him really high in speech(lower the better) and Brandon had him higher in sociability. I told him I think that was because I was going off some things the teachers have told me he does at school and where I am the one that has talked to them, I may not have relayed that info back to him as good as I should, so that could be a big part of it. No matter what though these were the results prior(my results, for some reason I didn't document Brandons):
February 21, 2015 results:
Speech, Language, Communication: 24
Sociability: 24
Sensory/Cognitive Awareness: 19
Health: 19
Overall Total: 86
September 27, 2015 results:
Speech, Language, Communication: 23
Sociability: 20
Sensory/Cognitive Awareness: 21
Health: 15
Overall Total: 79
So we are looking at a 9-17 point drop in 3 months! I couldn't believe it and was so excited. Here are the results for today:
January 30, 2016 results:
Speech Language, Communication: 24
Sociability: 10
Sensory/Cognitive Awareness:15
Health:13
Overall Total: 62
Brandon didn't have his emailed to him so I don't have his numbers exactly, but I know, like I said above, he was quite a bit lower on speech and higher on sociability. I was shocked when he told me his speech score because I thought I was being a little lenient on some of my answers so for him to be lower in the one area that is our main concern, excited me a bit. Sociability made quite a jump, if you go based on my score, and that is a pretty big deal in "autism world!" He is really starting to see the world around him and that is good! Can you imagine if he starts talking and how quickly this score could go lower and lower!
Friday, January 29, 2016
Lines(It's the little things that excite me the most)
This seems so simple and weird that it is kind of a big deal, but I know they have been working on this for a while at school, so they were so excited that it finally happened! Last year Dylan rarely even picked up a pencil/crayon/whatever and was not interested in coloring nor did it keep his attention at all. This year they have been excited that he will sit down and scribble! They have been working on imitation and so when I opened up his backpack and saw all these papers I was a bit confused:
Then I got to this one:
At first I thought, "Oh, ok." And then it sunk in that he actually drew a straight line and didn't just scribble like he usually does. Although this note does not "show" the teachers excitement just the fact that they put this in his backpack for me to see demonstrates the excitement that went into this simple little line!
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| I am guessing the ones with the stickers were just for fun and fine motor skills practice |
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| "After several prompted trials Dylan did these independently" |
As you can tell I am an emotional roller coaster on this journey. Somedays I feel like we are clear at the bottom on a long ride up and then other times we are shooting down at a fast speed with many twists and turns in between. Today, I am beyond excited at this little task and couldn't be more proud of the little guy!
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