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!
Saturday, January 30, 2016
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!
Tuesday, January 26, 2016
IEP Meeting
We had the yearly IEP meeting and I have to say that I left it feeling great! That is good because the past couple weeks have been rough on us and so I was expecting to walk out of there almost in tears(I have heard a lot of people dread these meetings for that reason)! It is plain to see that Dylan is loved at school and I couldn't be any happier! I am so thankful he has got into this program and has the teachers that he does because without them Dylan would not be moving along like he is!
The obvious place he struggles in, in their eyes and mine, is speech/vocabulary and so that is where we need to focus. However, if I understood correctly, they feel like he is right there ready to take the leap and try talking! I couldn't be any more excited at that comment! They said he is really paying attention and seems to "want to learn." The speech therapist said that she has been working on having him hand her a card that she asks, such as colors or objects. The plan is that he will eventually say the name as he hands the card. He does really well with colors, although he doesn't hand the right color every time. The reason she says he does well with colors is because she sees him looking and you can tell he is thinking about which one he should get. When she does the exercise with objects he quickly hands it over, with no thought to it. She figures that he knows if he hands something then he will be rewarded which is a treat, ha ha. She said she doesn't know how to tell those cute brown eyes NO, ha ha! I mentioned to them that he actually knew his colors just before starting school and could tell us them, but nothing since. They seemed impressed with that and will try to incorporate it with his school!
I love talking to them because you can just see the love they have for my son! While we were talking or they were reading what was on the paper, they would laugh at things like, "he through it aside and wanted nothing to do with it," or "he cries when it is time to go to recess because he wants to go where the treats are!" You can tell they know him and know him well and as they laughed they were picturing the little guy in their minds. I love the environment he is in!
Here are the goals for the year:
1.Dylan will engage in reciprocal interactions for at least three cycles when initiated by an adult 4/5 consecutive days of data collection, either at recess or free play time
2. Dylan will sustain eye contact for three seconds when he desires an item or activity when the toy or item is taken from him in a one on one setting with 80% correct 4/5 days with at least two different adults
3. Dylan will imitate varied actions, including play imitation in a one on one setting when an adult says "Do this" with 80% correct 4/5 days with at least two different adults
4. Dylan will follow a picture schedule as arranged by an adult to complete three simple activities independently, including selecting the activity to match the picture, completing the activity and putting away the activity with 80% correct 4/5 days with at least two different adults
5. Dylan will continue matching until he is able to match pictures out of three choices, similar non identical objects and pictures our of 3 choices and objects to pictures out of three choices with 80% correct 4/5 days with at least 2 different adults
6. Dylan will sort items then pictures into basic categories of such as animals, food and toys out of three categories with 80% correct 4/5 days with at least two different adults
7. Dylan will be able to follow at least 10 varied one step directions such as "throw in garbage, raise hand" with 80% correct 4/5 days with at least two different adults
8. SPEECH: Dylan will use words/signs independently to request and get his needs/wants met in 80% of opportunities across 3 consecutive data collections
-Dylan will imitate sounds/actions during familiar activities, such as songs, without cueing on at least 8 out of 10 opportunities across three consecutive sessions
- Dylan will imitate words/signs to request to get his wants and needs met in at least 8 out of 10 trials
9. SPEECH: Dylan will point to target nouns and verbs (in a field of at least 3 pictures) with 80% accuracy independently across 3 consecutive data collections
-Dylan will demonstrate an understanding pointing, targeted by having him point to single objects (point to eyes, point to nose, etc.) on at least 8 out of 10 attempts across multiple sessions
10. Dylan will be able to pick out/identify at least 20 basic varied items out of a choice of three with 80% correct 4/5 days with at least two different adults
11. Dylan will imitate simple marks on a paper with a writing instrument including vertical and horizontal lines and a circle when told "do this" with 80% correct 4/5 days with at least two different adults
12. OCCUPATIONAL THERAPY: Dylan will improve his fine motor skills by imitating 2 block designs, opening and closing 4 buttons, and imitating vertical, horizontal, and circular lines, all with verbal prompting, over 3 consecutive trials.
a. build a train and a bridge with blocks with physical prompting
b. open and close 2 buttons with physical prompting
c. trace vertical, horizontal, and circular lines
The obvious place he struggles in, in their eyes and mine, is speech/vocabulary and so that is where we need to focus. However, if I understood correctly, they feel like he is right there ready to take the leap and try talking! I couldn't be any more excited at that comment! They said he is really paying attention and seems to "want to learn." The speech therapist said that she has been working on having him hand her a card that she asks, such as colors or objects. The plan is that he will eventually say the name as he hands the card. He does really well with colors, although he doesn't hand the right color every time. The reason she says he does well with colors is because she sees him looking and you can tell he is thinking about which one he should get. When she does the exercise with objects he quickly hands it over, with no thought to it. She figures that he knows if he hands something then he will be rewarded which is a treat, ha ha. She said she doesn't know how to tell those cute brown eyes NO, ha ha! I mentioned to them that he actually knew his colors just before starting school and could tell us them, but nothing since. They seemed impressed with that and will try to incorporate it with his school!
I love talking to them because you can just see the love they have for my son! While we were talking or they were reading what was on the paper, they would laugh at things like, "he through it aside and wanted nothing to do with it," or "he cries when it is time to go to recess because he wants to go where the treats are!" You can tell they know him and know him well and as they laughed they were picturing the little guy in their minds. I love the environment he is in!
Here are the goals for the year:
1.Dylan will engage in reciprocal interactions for at least three cycles when initiated by an adult 4/5 consecutive days of data collection, either at recess or free play time
2. Dylan will sustain eye contact for three seconds when he desires an item or activity when the toy or item is taken from him in a one on one setting with 80% correct 4/5 days with at least two different adults
3. Dylan will imitate varied actions, including play imitation in a one on one setting when an adult says "Do this" with 80% correct 4/5 days with at least two different adults
4. Dylan will follow a picture schedule as arranged by an adult to complete three simple activities independently, including selecting the activity to match the picture, completing the activity and putting away the activity with 80% correct 4/5 days with at least two different adults
5. Dylan will continue matching until he is able to match pictures out of three choices, similar non identical objects and pictures our of 3 choices and objects to pictures out of three choices with 80% correct 4/5 days with at least 2 different adults
6. Dylan will sort items then pictures into basic categories of such as animals, food and toys out of three categories with 80% correct 4/5 days with at least two different adults
7. Dylan will be able to follow at least 10 varied one step directions such as "throw in garbage, raise hand" with 80% correct 4/5 days with at least two different adults
8. SPEECH: Dylan will use words/signs independently to request and get his needs/wants met in 80% of opportunities across 3 consecutive data collections
-Dylan will imitate sounds/actions during familiar activities, such as songs, without cueing on at least 8 out of 10 opportunities across three consecutive sessions
- Dylan will imitate words/signs to request to get his wants and needs met in at least 8 out of 10 trials
9. SPEECH: Dylan will point to target nouns and verbs (in a field of at least 3 pictures) with 80% accuracy independently across 3 consecutive data collections
-Dylan will demonstrate an understanding pointing, targeted by having him point to single objects (point to eyes, point to nose, etc.) on at least 8 out of 10 attempts across multiple sessions
10. Dylan will be able to pick out/identify at least 20 basic varied items out of a choice of three with 80% correct 4/5 days with at least two different adults
11. Dylan will imitate simple marks on a paper with a writing instrument including vertical and horizontal lines and a circle when told "do this" with 80% correct 4/5 days with at least two different adults
12. OCCUPATIONAL THERAPY: Dylan will improve his fine motor skills by imitating 2 block designs, opening and closing 4 buttons, and imitating vertical, horizontal, and circular lines, all with verbal prompting, over 3 consecutive trials.
a. build a train and a bridge with blocks with physical prompting
b. open and close 2 buttons with physical prompting
c. trace vertical, horizontal, and circular lines
Wednesday, January 20, 2016
Supplements
I have been giving him this Willards Water and C salts for a week or so now but haven't really seen a lot of changes. I do feel like he is trying to vocalize a little more at times, but still no words. Then after this picture and peoples comments about yeast I have decided today that I will add in the third supplement she has talked about being, Syntol AMD. That one is supposed to help rid the body of the yeast and not cause the die off effect, so we will see. I am adding it in at a much lower dose than it says and will increase gradually. I don't really know what I am doing and so it scares me a bit and I don't want to worsen his digestive system, especially since we are working on potty training at the moment. This yeast stuff makes sense to me since all he eats is sugar and refined carbs. Now only if I can figure out how to get him off of them, or at least decrease it tremendously, or that this new supplement will still work when continuing to bring in the sugars daily. Here's hoping we see something!
Tuesday, January 19, 2016
Tender Mercies!
After the day we had the other day, we were thankful it was MLK day and Lori had invited us down to come play for the day. We headed down there and knew Dylan would spend the majority of his time swimming, which he did! I think that was a big comfort and stress relief for him because he woke up this morning and didn't put up any sort of fight to get ready for school! When we got down there Lori gave me this article that Grandma Lucille had copied for me and thought I should read it:
Can you say, "wow, I needed to see this!" This really spoke to me and I see so many things in that article that fit our situation. I don't know that I was specifically chosen to be Dylan's Mother for the reasons it says in here, because I am a huge let down in the way I handle it. I know there are people in much worse situations and handle it with a smile on their face and accept what they have been given. I respect them!
The part about not sure if she even believes in God. Well, let me be honest(and Brandon doesn't even know this) but I have had my doubts lately and I absolutely hate this feeling. I used to just know there was a God and life was great! This person in our old neighborhood requested me as a facebook friend awhile ago. Apparently, he was struggling with this and was posting all sorts of stuff on his facebook page. For some reason one day, something just clicked and I thought "what if there isn't really a God." No I have not read into anything and I deleted him from Facebook because I can not deal with the constant things he puts on there and the doubt that he has now created in my mind. I don't want my children to go through this because it is awful. Reading that particular part in here that said, "But, Lord, I don't think she even believes in you." And the timing of this being shown to me was perfect and as some say a "Tender Mercy." I know that He is there and I just need to put my doubts aside and have faith. I need to know that things will not always be perfect but just do the best I can and let Him take it from there.
Brandon read this and laughed because the "Guardian Angel" part(I think any way) and that was the part of the article he didn't see being accurate. That says a lot about how he sees the way I handle things. Although, I believed somewhat the same things and didn't think I was "guardian angel" material. It opened my eyes and made me realize I really need to step up. If my husband thinks I can handle things better and be a better person then I really need to figure it out. After he read my last post, he said I was "airing out my dirty laundry and making him look bad." That is not my intentions because he is a great guy/husband/father but we just handle things differently and because of that sometimes we expect more. In my case, I expect more help and in his case tuning things out helps take the stress off. I am not saying he is wrong or doesn't deserve that but I just needed to get my feelings out and am pretty much counting this as a journal, so there you go.
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| https://news.google.com/newspapers?nid=1906&dat=19930904&id=LPkfAAAAIBAJ&sjid=OQIFAAAAIBAJ&pg=4961,191448&hl=en Here is a link to a different newspaper, same article |
Can you say, "wow, I needed to see this!" This really spoke to me and I see so many things in that article that fit our situation. I don't know that I was specifically chosen to be Dylan's Mother for the reasons it says in here, because I am a huge let down in the way I handle it. I know there are people in much worse situations and handle it with a smile on their face and accept what they have been given. I respect them!
The part about not sure if she even believes in God. Well, let me be honest(and Brandon doesn't even know this) but I have had my doubts lately and I absolutely hate this feeling. I used to just know there was a God and life was great! This person in our old neighborhood requested me as a facebook friend awhile ago. Apparently, he was struggling with this and was posting all sorts of stuff on his facebook page. For some reason one day, something just clicked and I thought "what if there isn't really a God." No I have not read into anything and I deleted him from Facebook because I can not deal with the constant things he puts on there and the doubt that he has now created in my mind. I don't want my children to go through this because it is awful. Reading that particular part in here that said, "But, Lord, I don't think she even believes in you." And the timing of this being shown to me was perfect and as some say a "Tender Mercy." I know that He is there and I just need to put my doubts aside and have faith. I need to know that things will not always be perfect but just do the best I can and let Him take it from there.
Brandon read this and laughed because the "Guardian Angel" part(I think any way) and that was the part of the article he didn't see being accurate. That says a lot about how he sees the way I handle things. Although, I believed somewhat the same things and didn't think I was "guardian angel" material. It opened my eyes and made me realize I really need to step up. If my husband thinks I can handle things better and be a better person then I really need to figure it out. After he read my last post, he said I was "airing out my dirty laundry and making him look bad." That is not my intentions because he is a great guy/husband/father but we just handle things differently and because of that sometimes we expect more. In my case, I expect more help and in his case tuning things out helps take the stress off. I am not saying he is wrong or doesn't deserve that but I just needed to get my feelings out and am pretty much counting this as a journal, so there you go.
Sunday, January 17, 2016
Linzee's Nonsense!
Yesterday was a pretty good day! In the morning Brandon told me he needed his hair cut, so I got out the clippers. Dylan was sitting at the table eating and started stressing out as soon as he realized what was going on. I told him it was not for him, ha ha. I really had no intention on cutting his hair because of how traumatic it is. He was in his booster seat eating, so since he was strapped in and I had a minute to not have to worry about where he was or what he was doing, we left him in there and started cutting Brandon's hair. He watched very intently and so when I was done with Brandon's hair, I told him to put Dylan on this chair and see his reaction. He stressed out, but no more than your typical child that didn't want their hair cut would, so we decided to go through with it. He did pretty good through most of it and just cried here and there. Big change since the last time. As I was finishing up around the ears and the base of his head, I needed him to hold still so Brandon did his regular bear hug and that is where he really stressed out. So this was a big deal, we actually had a mostly enjoyable experience!
Brandon's cousin got married later that day. I had no intention on taking the younger two because his soon-to-be bride seemed to be the type that had her wedding planned out for a while, so I didn't want to be the one crashing her special day. Lori called that afternoon and said they were hoping to get the Great Grandkids all together and have pictures taken, so I said I would at least come before the wedding and let them do the pictures. He was pretty good and seemed to enjoy the beauty of the occasion and let Grandpa follow him around. I was getting nervous that they weren't going to get to the pictures before the wedding, but luckily they did! So we had pictures and Dylan, Desi, and I left so that we didn't cause any commotion! He was actually better for pictures than Boston! Dylan stood there! I looked up to realize Boston was flopping from front to back the whole time, so I will honestly be surprised if Boston is facing forward for any of the pictures or is not a blurred mess. I think everyone was focused on getting Dylan in the picture that Boston went unnoticed.
Today has been the complete opposite type of day and not in a good way. We have been doing pretty good with the potty training and on Wednesday it seemed to finally be "clicking," but today he decided to crap in the bathtub on two different occasions! He has been missing swimming I think because he keeps bringing us his swimming suit, even though it has been cold and snowy. I guess playing in the bathtub is replacing his swimming time, so he probably has had 3 baths each day the past couple of days. I could tell he was about to crap, so I made him get out(both occasions) and sit on the toilet. He got back in the tub and went in the next minute or so luckily just little pebbles, ha ha. The second time I made him get out of the tub and would not let him back in to show him that he is not getting rewarded for doing something he should not do. That was a struggle but I stuck to my guns!
He has also started to get undressed, usually when he feels he needs to go to the restroom, which is a good sign. However, I can't just let him strip down in the middle of the room when he gets that urge because one day he is going to be some place and think it is alright to do that. I will get a call saying my son has been taken to jail for lewdness one day and so we need to prepare now. It gets very frustrating to get his clothes on and turn around for 2 seconds to see him stripping down again and doing things he should not do with himself(sorry TMI). He is all boy! I know he is just curious and exploring his body, but the thoughts of him doing this when he is older and him going to jail because he doesn't know any better, scares the crap out of me!
He has been extremely emotional today too. I have got after him several times and he cries and seems to want to be comforted, but today is one of those days where you just have to walk away and cool down! Don't get me wrong I love that he comes to me for comfort, but I am at my wits end today. I have also noticed lately that I have to be the one to do everything. That is not entirely new but usually if I am busy I can tell him to ask Dad and he does(in his own way of course). Lately, that does not fly and he does not give up until I go to where he wants me to go. I wonder if that is because I am female and all of his teachers are female and so he is getting used to having only females help him. This also leads to Desi being left to do her own thing and entertain herself 90% of the day, and no I am not lying. I feel bad for her because seriously, who lets a 2 year old roam around the house pretty much all day long because you have no other choice, ME! I feel bad for her but at the same time so thankful that she is the type of 2 year old that I know is perfectly fine and safe doing this!
Today has not been the best, but then again not the worst day, but it has made me think back about things. Lately religion has not really been a big part of my life and who knows when it will be again, maybe someday. But I had my patriarchal blessing a few years back(just before one of my babies blessings and that may have been Dylan) and in it it said something about "not being alone like I have felt in the past." That really caught me off guard because I had never really remembered feeling like I was "alone." Of course we all have our moments where we may not agree with someone or something and want to do things our own way, so I shrugged it off and figured it was something like that. Today, and this whole Autism experience, has brought a whole new meaning to "feeling alone!" I am not saying just Autism is hard to deal with, but any "special needs," disease, sickness, whatever you may be dealing with, but in my case Autism!
Yes we have a super support system with Dylan through family and we could honestly not do this without any of you that may read this, but unless this is your everyday reality, I think it is really hard to completely understand the everyday stress and turmoil it causes the whole family! It's like my Mom's depression. I think I have a good understanding of how it affects her and the choices she makes, but I will never truly understand how she feels unless I get to that point in life. My other children suffer the most because they used to have a Mother that paid attention to what they were doing or actually played with them and now they have a Mother that walks out of the room to check on their brother as they are trying to tell or show her something. I am sure they feel completely ignored, and I hate that. I wanted to be the kind of Mom that they knew cared about them and was always there for them, but things have changed these past 2(almost) years.
We are a family that likes to get out and go places. We go "stir crazy" staying at home. We still try our best to do things, but there are times where we have to take off after only being there for a short time because Dylan is not behaving. Or, gasp, we use Dylan as an excuse to not go places that requires being quite and sitting still for short/long amounts of time. That is not fair to our other children. I only hope my children are better than their Mother and use this experience as a learning experience and it teaches them sympathy, empathy, patience, understanding, etc. and as they grow older they are able to be a positive influence to someone going through something like this. I had a couple of roommates(one being Dylan's teachers daughter) that worked with special needs people. I always admired them, and still do, for choosing that path in life. It takes a special person that is able to work with special needs people and heaven knows the world needs them. These two roommates have always been someone I look up to for this reason alone. I hope my children will be like them!
I used to nag a lot less(but I have always been a nagger) at Brandon for doing things he likes to do, like watching sports. He now gets to watch them after the kids go to bed since he has had to record them throughout the day. That has its benefits because he also avoids any device that may give him the results before he has the chance to watch it. He is giving up a BIG part of him too, but at times he throws it at me like I should feel bad for him. He deserves some "him time" but so do I. I get mad because when I throw a fit he tells me to do what I want to do then and he doesn't even know what I like to do. Hell, I don't even know what I like to do anymore because all of my time is consumed on Dylan, the other kids, how I can get us all to start eating healthy or at least fed, their school work, the everyday life of a Mom! I have started exercising recently but that comes with a price of waking up an hour earlier than I was already waking up, because if I don't then the rest of the day is chaos. Sometimes if you want some "you time" you have to make that sacrifice!
I know I signed up for this Mom thing, but I was NOT prepared to be an Autism Mom. I love being a Mom and I love the children that call me Mom! I just don't know how to handle the stress of Autism some days. So today, I am handling it by writing my feelings! I know one day I will look back and will be so thankful for where Dylan is at and maybe even what he has taught us. I don't expect him to be "cured" but I just need that communication! Communication is a very important skill, I am learning now more than ever. So heres to hoping that one day we look back and say, "Remember those (insert number of years) that was pure Hell! But look where we are now!" I can handle this, but it would be so much easier to understand if I knew when the communication part would click!
Brandon's cousin got married later that day. I had no intention on taking the younger two because his soon-to-be bride seemed to be the type that had her wedding planned out for a while, so I didn't want to be the one crashing her special day. Lori called that afternoon and said they were hoping to get the Great Grandkids all together and have pictures taken, so I said I would at least come before the wedding and let them do the pictures. He was pretty good and seemed to enjoy the beauty of the occasion and let Grandpa follow him around. I was getting nervous that they weren't going to get to the pictures before the wedding, but luckily they did! So we had pictures and Dylan, Desi, and I left so that we didn't cause any commotion! He was actually better for pictures than Boston! Dylan stood there! I looked up to realize Boston was flopping from front to back the whole time, so I will honestly be surprised if Boston is facing forward for any of the pictures or is not a blurred mess. I think everyone was focused on getting Dylan in the picture that Boston went unnoticed.
Today has been the complete opposite type of day and not in a good way. We have been doing pretty good with the potty training and on Wednesday it seemed to finally be "clicking," but today he decided to crap in the bathtub on two different occasions! He has been missing swimming I think because he keeps bringing us his swimming suit, even though it has been cold and snowy. I guess playing in the bathtub is replacing his swimming time, so he probably has had 3 baths each day the past couple of days. I could tell he was about to crap, so I made him get out(both occasions) and sit on the toilet. He got back in the tub and went in the next minute or so luckily just little pebbles, ha ha. The second time I made him get out of the tub and would not let him back in to show him that he is not getting rewarded for doing something he should not do. That was a struggle but I stuck to my guns!
He has also started to get undressed, usually when he feels he needs to go to the restroom, which is a good sign. However, I can't just let him strip down in the middle of the room when he gets that urge because one day he is going to be some place and think it is alright to do that. I will get a call saying my son has been taken to jail for lewdness one day and so we need to prepare now. It gets very frustrating to get his clothes on and turn around for 2 seconds to see him stripping down again and doing things he should not do with himself(sorry TMI). He is all boy! I know he is just curious and exploring his body, but the thoughts of him doing this when he is older and him going to jail because he doesn't know any better, scares the crap out of me!
He has been extremely emotional today too. I have got after him several times and he cries and seems to want to be comforted, but today is one of those days where you just have to walk away and cool down! Don't get me wrong I love that he comes to me for comfort, but I am at my wits end today. I have also noticed lately that I have to be the one to do everything. That is not entirely new but usually if I am busy I can tell him to ask Dad and he does(in his own way of course). Lately, that does not fly and he does not give up until I go to where he wants me to go. I wonder if that is because I am female and all of his teachers are female and so he is getting used to having only females help him. This also leads to Desi being left to do her own thing and entertain herself 90% of the day, and no I am not lying. I feel bad for her because seriously, who lets a 2 year old roam around the house pretty much all day long because you have no other choice, ME! I feel bad for her but at the same time so thankful that she is the type of 2 year old that I know is perfectly fine and safe doing this!
Today has not been the best, but then again not the worst day, but it has made me think back about things. Lately religion has not really been a big part of my life and who knows when it will be again, maybe someday. But I had my patriarchal blessing a few years back(just before one of my babies blessings and that may have been Dylan) and in it it said something about "not being alone like I have felt in the past." That really caught me off guard because I had never really remembered feeling like I was "alone." Of course we all have our moments where we may not agree with someone or something and want to do things our own way, so I shrugged it off and figured it was something like that. Today, and this whole Autism experience, has brought a whole new meaning to "feeling alone!" I am not saying just Autism is hard to deal with, but any "special needs," disease, sickness, whatever you may be dealing with, but in my case Autism!
Yes we have a super support system with Dylan through family and we could honestly not do this without any of you that may read this, but unless this is your everyday reality, I think it is really hard to completely understand the everyday stress and turmoil it causes the whole family! It's like my Mom's depression. I think I have a good understanding of how it affects her and the choices she makes, but I will never truly understand how she feels unless I get to that point in life. My other children suffer the most because they used to have a Mother that paid attention to what they were doing or actually played with them and now they have a Mother that walks out of the room to check on their brother as they are trying to tell or show her something. I am sure they feel completely ignored, and I hate that. I wanted to be the kind of Mom that they knew cared about them and was always there for them, but things have changed these past 2(almost) years.
We are a family that likes to get out and go places. We go "stir crazy" staying at home. We still try our best to do things, but there are times where we have to take off after only being there for a short time because Dylan is not behaving. Or, gasp, we use Dylan as an excuse to not go places that requires being quite and sitting still for short/long amounts of time. That is not fair to our other children. I only hope my children are better than their Mother and use this experience as a learning experience and it teaches them sympathy, empathy, patience, understanding, etc. and as they grow older they are able to be a positive influence to someone going through something like this. I had a couple of roommates(one being Dylan's teachers daughter) that worked with special needs people. I always admired them, and still do, for choosing that path in life. It takes a special person that is able to work with special needs people and heaven knows the world needs them. These two roommates have always been someone I look up to for this reason alone. I hope my children will be like them!
I used to nag a lot less(but I have always been a nagger) at Brandon for doing things he likes to do, like watching sports. He now gets to watch them after the kids go to bed since he has had to record them throughout the day. That has its benefits because he also avoids any device that may give him the results before he has the chance to watch it. He is giving up a BIG part of him too, but at times he throws it at me like I should feel bad for him. He deserves some "him time" but so do I. I get mad because when I throw a fit he tells me to do what I want to do then and he doesn't even know what I like to do. Hell, I don't even know what I like to do anymore because all of my time is consumed on Dylan, the other kids, how I can get us all to start eating healthy or at least fed, their school work, the everyday life of a Mom! I have started exercising recently but that comes with a price of waking up an hour earlier than I was already waking up, because if I don't then the rest of the day is chaos. Sometimes if you want some "you time" you have to make that sacrifice!
I know I signed up for this Mom thing, but I was NOT prepared to be an Autism Mom. I love being a Mom and I love the children that call me Mom! I just don't know how to handle the stress of Autism some days. So today, I am handling it by writing my feelings! I know one day I will look back and will be so thankful for where Dylan is at and maybe even what he has taught us. I don't expect him to be "cured" but I just need that communication! Communication is a very important skill, I am learning now more than ever. So heres to hoping that one day we look back and say, "Remember those (insert number of years) that was pure Hell! But look where we are now!" I can handle this, but it would be so much easier to understand if I knew when the communication part would click!
Dreams!
Short and sweet: I had a dream last night! Although, I don't remember a lot about it, but I do remember Dylan was requesting things using two word phrases! Things like: "Mom eat," "Watch show" and a few others. They were basic but they were a few of the things that would get communication rolling around here and I welcome any of those phrases to come out of his mouth at anytime! That would be the day and worthy of a BIG CELEBRATION!
Wednesday, January 13, 2016
PT Conference
She also said she feels like connections are starting to be made more so than last year. She said she doesn't know what has changed and wonders if he has matured(they notice the difference there from last year) or if it is the fact that they have more one on one time this year so that he is getting more time or what. I wonder if it could be STEM CELLS, but of course she doesn't know that! I am not taking away from what they have done for him, because they are amazing and are working their butts off to help my child so I know without them we would not be where we are today! It seems like the "connections" she talks about started being noticed by them not long after we went to Panama the second time, so even though we have felt like we aren't seeing a lot of improvement, this made us think otherwise! I seriously love his teachers and they are some people I will never be able to Thank enough for the time and effort they put forth for my little Dyl!
The one area that they are not seeing much of anything is very obvious, speech! I wish, hope, pray(to be honest me and praying doesn't happen much these days and maybe that is my problem) that this is something we will see! The one thing that I really want! I can handle different, that does not bother me one bit, but this nonverbal stuff really eats at me! I know he has got to be so frustrated and wanting nothing more than to tell me which episode of Team Umizoomi he wants to watch, but instead we play the guessing game and have to turn on 4 different episodes until A.) I found the right one or B.) He just gives up and accepts whatever one is on. She does feel his receptive language(understanding) is coming along. She said that usually comes first and once they have a good grasp on it, then speech comes along. Sometimes quick and sometimes not so quick, just varies for each individual.
This month Utah finally got the bill put in place to have insurance companies cover treatments for Autism. It was actually passed around the same time that Dylan regressed, so I have anxiously been waiting for January 2016 just for this reason alone! I asked her what type of therapy would be good for him and she pretty much said anything with speech, but not to get him in too much and overwhelm him. She said they do ABA type therapy there at school, but that might be something to try. I have been trying to figure out this insurance stuff but haven't had a lot of luck on exactly what and how it will be covered. I was thinking before the meeting thought that I wanted to look into getting him into speech therapy, so I need to figure that out!
Overall, they think he is doing pretty well and moving forward, just at his own pace! She is excited to have him through next year too so that they can keep working with him before he enters the education system completely.
They have been working on imitating a lot and he has got to where he will do as they say. Things like patting his tummy, thigh, head, clapping hands, raise hand, etc. He is starting to play with toys correctly(a little bit) but not with imagination. He is getting really good at matching identical items, even when throwing in several different items. They want to start having him match similar items like give him a red frog and a cookie. He will then be given a cookie that looks a little different(like a different color or something) then he will be expected to be able to identify that it is the same object as the one they already gave him and match it with the cookie.
Funny things she told me that Dylan has done:
1. He is a sugar addict and they love that fact because that is how they get him to sit, listen, do as they ask, pretty much anything. He loves going to the stations(which is where he usually gets these rewards) more than going to recess. What kid would rather do school work than recess? My sugar addicted boy, that's who! We were discussing behaviors and how neither of us really think that is an issue for Dylan. She wants to watch and make daily(or at least more documented) notes on his behavior. From her just thinking about it, she didn't think he has any, but she wonders if his are so mild that some of the others make it look like he has none. She is going to watch that closely, just to be more accurate. I think she is right with what she said tonight, that he really doesn't have any, except the occasional head bunt or grab out of frustration! So back to funny, they have been working on "raise hand" as one of the commands. So before going out to recess they ask something like, "Who wants to go to recess?" The kids have to raise their hand before they can go. Dylan raises his hand while crying because he wants to go to the station area. He unwillingly goes to recess!
2. While eating lunch, they have a PECS(picture system) thing going on. They have binders with pictures on it. They get the pictures of what is in their lunch that day. The kids have to grab the picture and hand it to the teacher when they want more or something else that is not on their plate. Dylan has got the system down quite well. So well in fact, he has started looking through the rest of the pictures and requesting things that are not in his lunch such as chocolate cookies! I laughed because that is definitely him. They decided to take the additional pictures out so that it was not tempting and for the fact they can't give them what they don't have!
Words they have heard Dylan say:
"Bu" for bus! He hasn't said that one since we got back from Panama
"Hi"
"Down"
"Hi Daddy!" They are pretty sure he said this when trying to get them to pretend to talk on the phone! I knew Brandon would love hearing that, but I almost forgot to tell him!
Some things I have noticed him doing lately, that are small but big for him, are:
Pointing at something he wants! He has, ever since he regressed, used his whole hand to show us what he wants. I have noticed in the past day or two that that pointing finger is out and showing us just what he wants! I love it! I don't know the reason behind that but that is a normal Autism trait.
He has been looking at himself in the mirror and smiling! He was even opening his mouth and letting out and "O" sound today. I started to copy him a bit and we kept that going for a while!
I don't know if because he has all female teachers, that he is used to going to females for everything or what. But lately he pretty much insists that I am the one to help him with things. Don't get me wrong I love it, but sometimes I need to get things done such as make dinner, and I can't help him right then. He very rarely allows Brandon to help him when he is in one of these moods, so that makes things hard sometimes.
Potty Training Update
We have been at the Potty Training thing for a few weeks now and not until today did I really see some major trying on Dylan's part. Don't get me wrong, he has done a great job and has learned to hold it in pretty well. When he started going back to school after Christmas break, I was a little nervous because he is on the bus for an hour each way. That is a long time for a newly trained kid to be on there without a toilet. He did amazing and has had no accidents on the bus, going on a week and a half now! Sometimes when he would get home, I would rush him into the bathroom and the sight of the toilet would set him off, but at least he held it until then. He has had one accident at school and that is it! I spoke with his teacher tonight for PT Conference and she said they now take him to the bathroom about every hour! I was surprised by this because we still take him every 15-20(sometimes more) minutes. But I think that is because at home he is constantly drinking something and at school he doesn't have access to the fridge to get what he wants when he wants, so that would be the difference.
Anyway, he was out of school today because of PT Conference so it was Dylan, Desi and I all day. I had been upstairs doing something and came down and noticed Dylan's pants on the ground. I took off running, only to find him on the toilet, just flushing it. I hurried and looked in his pants and there was nothing, I was so excited! That happened quite a few different times throughout the day! This is the first day I can say it has actually "clicked" and he is starting to recognize the urge and knows when he needs to go in to the bathroom. He did have one accident but he was on the bathroom rug, so he had went in the right room but just did not make it! Way to go Dylan! I am so excited and can't wait until the potty training phase is completely done with, WHAT A RELIEF it will be!
Anyway, he was out of school today because of PT Conference so it was Dylan, Desi and I all day. I had been upstairs doing something and came down and noticed Dylan's pants on the ground. I took off running, only to find him on the toilet, just flushing it. I hurried and looked in his pants and there was nothing, I was so excited! That happened quite a few different times throughout the day! This is the first day I can say it has actually "clicked" and he is starting to recognize the urge and knows when he needs to go in to the bathroom. He did have one accident but he was on the bathroom rug, so he had went in the right room but just did not make it! Way to go Dylan! I am so excited and can't wait until the potty training phase is completely done with, WHAT A RELIEF it will be!
Friday, January 8, 2016
Emotion
The day started off on a good note today! I had called Dylan's teacher to set up a time to meet with her for PT conference next week. While I was talking to her she started to tell me how excited she is about where Dylan is headed. I think she has told me the same thing recently but for her to tell me again, it must be good. She said she is noticing that he is really starting to look at you as if he is saying, "you are teaching me and I want to learn what you have to teach!" She wondered if we are seeing the same thing. I would say he has his days where he is really in tune and then we have a few days that he is all over, but for the most part, yes I feel good about where he is going.
She said she feels he is really starting to "connect" and that is a REALLY good place to be. That is the base for the skills he needs to learn and from here things could really start clicking and we should begin moving forward. I love her excitement and can tell that she is really trying to help my little guy! She said we will talk more next week, so I can't wait to see what else I am going to hear! She said the potty training is going pretty well there and he has only had one accident which was a "crappy" one. I told her for that one, you just really have to watch him and catch him at the right time. That is when I drive myself crazy because I am "pretty sure" he needs to go and don't want him out of my sight. That can go on for hours some days!
Later on last night, we were eating dinner and Brielle was giving us attitude and taking it out on Boston. After she said a few mean things, both Brandon and I yelled out. Except when Brandon raised his voice we got a reaction out of Dylan. Dylan and Brandon were sitting on opposite sides of the table, and I had honestly forgot Dylan was even there because we recently purchased a booster seat that we could strap him into for the purpose of getting him to sit and eat, well it is working. I had my back to the table getting everyones dinner dished up and Dylan had just been sitting there, quietly! When Brandon raised his voice, Dylan started to let out a very heart broken cry. Poor kid had his feelings hurt and hurt pretty bad. I went to comfort him and told Brandon he better come over and make sure Dylan knew he wasn't the one getting in trouble. I think he was thinking, "I was just sitting here minding my own business and then Dad yells at me." I could see him thinking he was getting yelled at because he was the only one sitting at the table and right across from Brandon. Anyway, the poor kid cried for a good 5 minutes and even then seemed a little sad.
The good thing about this reaction is that he read Brandon's emotion! Part of Autism is that they are unable to read emotions and react incorrectly. Many times they may laugh when they should cry or something like that. So although my heart was breaking for my little boy that did no wrong, I was also rejoicing that he understood the anger in the tone of voice, only it was directed to someone else.
Also worth noting: We are on day 3 of Dylan wearing regular pajamas and not taking them off through the night! We still duct tape his diaper, "Just to be safe!"
She said she feels he is really starting to "connect" and that is a REALLY good place to be. That is the base for the skills he needs to learn and from here things could really start clicking and we should begin moving forward. I love her excitement and can tell that she is really trying to help my little guy! She said we will talk more next week, so I can't wait to see what else I am going to hear! She said the potty training is going pretty well there and he has only had one accident which was a "crappy" one. I told her for that one, you just really have to watch him and catch him at the right time. That is when I drive myself crazy because I am "pretty sure" he needs to go and don't want him out of my sight. That can go on for hours some days!
Later on last night, we were eating dinner and Brielle was giving us attitude and taking it out on Boston. After she said a few mean things, both Brandon and I yelled out. Except when Brandon raised his voice we got a reaction out of Dylan. Dylan and Brandon were sitting on opposite sides of the table, and I had honestly forgot Dylan was even there because we recently purchased a booster seat that we could strap him into for the purpose of getting him to sit and eat, well it is working. I had my back to the table getting everyones dinner dished up and Dylan had just been sitting there, quietly! When Brandon raised his voice, Dylan started to let out a very heart broken cry. Poor kid had his feelings hurt and hurt pretty bad. I went to comfort him and told Brandon he better come over and make sure Dylan knew he wasn't the one getting in trouble. I think he was thinking, "I was just sitting here minding my own business and then Dad yells at me." I could see him thinking he was getting yelled at because he was the only one sitting at the table and right across from Brandon. Anyway, the poor kid cried for a good 5 minutes and even then seemed a little sad.
The good thing about this reaction is that he read Brandon's emotion! Part of Autism is that they are unable to read emotions and react incorrectly. Many times they may laugh when they should cry or something like that. So although my heart was breaking for my little boy that did no wrong, I was also rejoicing that he understood the anger in the tone of voice, only it was directed to someone else.
Also worth noting: We are on day 3 of Dylan wearing regular pajamas and not taking them off through the night! We still duct tape his diaper, "Just to be safe!"
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