Today was Dylan's last day of Summer School. The bus driver informed me that he was the only kid that attended every day! I laughed and thought, "I don't know if that is a good thing or a bad thing. Am I the only parent that needed those 4 hours 3 days a week to mentally prepare for the rest of the day". I didn't get the opportunity to talk to the teacher like I did in the regular school since it was a half day thing so I don't know how he did. I got one note that him and another kid collided and he kind of bonked his head on the ground and then a note today that he got a scratch on his elbow, other than that I have no idea how he was.
I am super impressed with the bus driver and wish she was the driver during the school year. She loves my son and really put forth the effort to get to know him. Here are some things that she told me about Dylan throughout the summer school session:
-there is something about him that just draws him to you
- she is a sucker for brown eyes and she loves his eyes
- he is ticklish and he would even try to get her back
- he has a great personality! She said some of the kids have no personality but she loves his
- he is girl crazy( I should have asked her more on that one)
- there was one week he was not feeling it I guess but she told me he had been grumpy on the bus, which through me off guard because he loves to ride, but she mentioned the teachers had also said he was struggling with the school thing too.
-he is the only kid that buckles himself in so they would let him and make sure it was done right.
I will miss my morning and afternoon talks with her because she was so positive and I knew Dylan was in good hands with her! Now we have a few weeks until regular school starts up! I am not sure if we will start him going all day or do the half day still but I guess we will figure that out soon!
Thursday, July 30, 2015
Monday, July 13, 2015
Swimming
I am hoping we are starting to go on the upward slope of the "roller coaster ride" we are on. Other parents that have gone through this have referred to it as that and said you see gains and then you have your set backs and then all of a sudden they take off again. We have not seen the huge gains some people are reporting back, yet, but over the past couple days I feel he is trying a little harder. He has been a little more involved and it seems that he is making more sounds at an attempt of communicating and the eye contact has been pretty good these past couple days.
Ask me if I felt things were looking up a few days ago, I would have answered with a big "HELL NO" ha ha! We were in Nephi for the stampede and at Brandon's Grandma Ann's house for a little family get together with relatives from California. The whole time there was spent chasing Dylan around as he went in the side door and out the front door. Brandon even counted him down at 1 point and he walked out the door right on cue. Brandon thinks I waste my energy by following his every move, but I know the one time he is not followed will be the one time he takes off or gets in to something, so I prefer to play it safe. We headed down to the carnival to go on a few rides, but that didn't last long for him. Rick and Lori tried taking him on the Merry Go Round and he wanted nothing to do with it, so him and Grandpa headed back to Grandma Ann's. When we got done at the carnival we found out that Rick had walked all the way to their house with him, like I said before, he is amazing! The next day they had another get together, which Brandon really wanted to go to, but I was not about to take Dylan down again. I was not in the mood to follow him around and not about to pawn that responsibility off on to someone else.
Today Brandon came home from work and while I was making dinner we were talking about the older two going to swimming lessons later that evening. I really don't remember either one of us actually saying the word "swimming" because we knew what we were talking about. Brandon mentioned that after work one of these days he would take Dylan because he hasn't got to go very much this Summer. About 10 minutes later, I look up and Dylan is walking around with his swim suit. I laughed and tried to convince Brandon to hurry and take him to the Payson pool because it was 5 and it closed at 7. He said he would take him tomorrow. When it came time for Brielle and Bos to go, they got their swimming suits on and that is when I saw Dylan walking down the hall, losing clothes as he went. I knew he was on his way to get his swim suit on. Sure enough he walked out with nothing but his shoes on(tie shoes he can't get off) and swimming suit in hand. I couldn't deny the little guy the chance to swim, so I got our little pool and let him go for a swim. This is something he used to do and has not done that in a long time! He is expressing his wants, not through words but actions, so to me that is on the uphill climb and I am hoping it continues on!
He did have his swim suit on for about 1 minute. Every time he would stand up or get out of the pool I would say, "You have to get your suit on if you are getting out" He would immediately jump right back in.
Ask me if I felt things were looking up a few days ago, I would have answered with a big "HELL NO" ha ha! We were in Nephi for the stampede and at Brandon's Grandma Ann's house for a little family get together with relatives from California. The whole time there was spent chasing Dylan around as he went in the side door and out the front door. Brandon even counted him down at 1 point and he walked out the door right on cue. Brandon thinks I waste my energy by following his every move, but I know the one time he is not followed will be the one time he takes off or gets in to something, so I prefer to play it safe. We headed down to the carnival to go on a few rides, but that didn't last long for him. Rick and Lori tried taking him on the Merry Go Round and he wanted nothing to do with it, so him and Grandpa headed back to Grandma Ann's. When we got done at the carnival we found out that Rick had walked all the way to their house with him, like I said before, he is amazing! The next day they had another get together, which Brandon really wanted to go to, but I was not about to take Dylan down again. I was not in the mood to follow him around and not about to pawn that responsibility off on to someone else.
Today Brandon came home from work and while I was making dinner we were talking about the older two going to swimming lessons later that evening. I really don't remember either one of us actually saying the word "swimming" because we knew what we were talking about. Brandon mentioned that after work one of these days he would take Dylan because he hasn't got to go very much this Summer. About 10 minutes later, I look up and Dylan is walking around with his swim suit. I laughed and tried to convince Brandon to hurry and take him to the Payson pool because it was 5 and it closed at 7. He said he would take him tomorrow. When it came time for Brielle and Bos to go, they got their swimming suits on and that is when I saw Dylan walking down the hall, losing clothes as he went. I knew he was on his way to get his swim suit on. Sure enough he walked out with nothing but his shoes on(tie shoes he can't get off) and swimming suit in hand. I couldn't deny the little guy the chance to swim, so I got our little pool and let him go for a swim. This is something he used to do and has not done that in a long time! He is expressing his wants, not through words but actions, so to me that is on the uphill climb and I am hoping it continues on!
He did have his swim suit on for about 1 minute. Every time he would stand up or get out of the pool I would say, "You have to get your suit on if you are getting out" He would immediately jump right back in.
Sunday, July 12, 2015
Watermelon!
This may be small to some but to Dylan it is a big step(in my eyes)! We went out and tried finding decorations for our house and then went to eat at Sizzler. Dylan loves fries and I always know that is something he'll eat. We got the older two Grilled Cheeses and Dylan and Desi Chicken Strips and Fries. I decided to get Brielle a side of Watermelon instead of fries because she doesn't eat the fries.
We had a pretty good time while eating, but then Dylan decided it was time to get out of his seat. Luckily they had us in a corner, so we let Dylan get out and run around in the corner except for there was a fire hydrant that we had to keep a watchful eye on. After about 10 minutes of that, he started trying to make his way to the plates. I gave him a fry thinking that was what he was after. He tossed it and made his way to Brielle's plate, where the Watermelon had sat untouched. He grabbed a piece of it and I watched to see what would happen. I figured the feel alone would send it right to the floor. As long as he held the outer edge of it he was fine, but when he touched the pink part he would wipe his hands off. Next I knew he bit into it. I was prepared to watch it being spit out. Nope, he ate it! The first bite you could tell it was new to him and he wasn't quite sure what it was, but when he took several more bites, I was excited and quite shocked to say the least!
We had a pretty good time while eating, but then Dylan decided it was time to get out of his seat. Luckily they had us in a corner, so we let Dylan get out and run around in the corner except for there was a fire hydrant that we had to keep a watchful eye on. After about 10 minutes of that, he started trying to make his way to the plates. I gave him a fry thinking that was what he was after. He tossed it and made his way to Brielle's plate, where the Watermelon had sat untouched. He grabbed a piece of it and I watched to see what would happen. I figured the feel alone would send it right to the floor. As long as he held the outer edge of it he was fine, but when he touched the pink part he would wipe his hands off. Next I knew he bit into it. I was prepared to watch it being spit out. Nope, he ate it! The first bite you could tell it was new to him and he wasn't quite sure what it was, but when he took several more bites, I was excited and quite shocked to say the least!
Tuesday, July 7, 2015
Grandpa and Grandma Time!
Dylan has been blessed with 2 amazing sets of Grandparents, 4 amazing Great Grandmas(one who passed away last year just before we started this journey) and an amazing Great Grandpa! Not very many people have that much amazingness in their lifetime! That's not to mention the Aunts, Uncles, and cousins who play just as big of a role in Dylan's life. They are all a big part in Dylan's life and I wouldn't have it any other way.
Family is big to me! I was raised around my Grandparents and want my children very involved in their Grandparents lives as well. Every single one of these Grandparents love and care deeply about Dylan! I know they would all do anything for him, but for some health challenges get in the way. We all know that Dylan is a lot of work and requires complete attention!
There is one set that go above and beyond to give Dylan the time and attention he needs, without these two people Brandon and I would not be able to face our own reality. They are amazing Grandparents and Parents. They take Dylan for us quite frequently, at least every other weekend if not every week. It gives Brandon and I some time to recharge and some time to focus on our other 3 as well. Life is stressful on it's own but when you throw Autism in the mix, that only magnifies the stress times a million, at times.
They love him more than he will ever know and are waiting just as patiently, and probably have more patience with him, for him to make his return. He has his routines there and they do everything they can to make them happen. Most of their time spent with him is either watching him swim in the hot tub(clothing optional!) or out riding around. The rides come either in their car or on the Razor and Dylan just loves it either way. They take him camping on their own even! They have an unbreakable bond and I love seeing how happy my little guy is when he is with them!
Family is big to me! I was raised around my Grandparents and want my children very involved in their Grandparents lives as well. Every single one of these Grandparents love and care deeply about Dylan! I know they would all do anything for him, but for some health challenges get in the way. We all know that Dylan is a lot of work and requires complete attention!
There is one set that go above and beyond to give Dylan the time and attention he needs, without these two people Brandon and I would not be able to face our own reality. They are amazing Grandparents and Parents. They take Dylan for us quite frequently, at least every other weekend if not every week. It gives Brandon and I some time to recharge and some time to focus on our other 3 as well. Life is stressful on it's own but when you throw Autism in the mix, that only magnifies the stress times a million, at times.
They love him more than he will ever know and are waiting just as patiently, and probably have more patience with him, for him to make his return. He has his routines there and they do everything they can to make them happen. Most of their time spent with him is either watching him swim in the hot tub(clothing optional!) or out riding around. The rides come either in their car or on the Razor and Dylan just loves it either way. They take him camping on their own even! They have an unbreakable bond and I love seeing how happy my little guy is when he is with them!
Sunday, July 5, 2015
Grandma Cleo!
I had a random dream a week or so ago. In it my Grandma Cleo came to me and everything is all so fuzzy but when I woke up all I could remember was that she was talking to me. She came to us at the pool. The message she told me was to not listen to the naysayers of the stem cells. That was really all I remember of the dream, then and now as I am writing this down. I haven't really ran across anyone that, to my face at least, have been against the stem cells but we haven't really told many people either(just the family, a few friends, and then people that have heard through the grapevine). Maybe one day this dream will have more meaning, but for now we are just going to keep chugging along and that dream will always be in the back of my mind, for that "one day" when someone wants to tell me I am doing things wrong!
Thursday, July 2, 2015
Unstoppable Anthony
If anyone is interested check out "Unstoppable Anthony Stem Cell Journey" on Facebook. This is a little boy that is 6 or 7 and went for the first time for stem cells in December. He has had some amazing progress and gives me so much hope for Dylan. In fact, he is in Panama right now for his second round! His Dad is so positive and is such a great support for all of us on this facebook group for Stem Cells for Autism. He is always there to give advice and to tell you to just keep going because you just need to support them through their changes.
One of the things that they have seen big improvements on is the bolting. He talks about how they went for a walk and not once did he have to grab his hand. Where in the past if they let go of Anthony for a second, he'd be gone. He said he(the Dad) still twitches and expects Anthony to take off but it doesn't happen! The Dad refers to it as having PTSD, because his body is so used to reacting to his son running off. I can relate to that, however, I think Dylan has made some improvements in this area as well, just not 100% yet. I have so much hope watching this little boys story, so I thought I'd pass it along!
One of the things that they have seen big improvements on is the bolting. He talks about how they went for a walk and not once did he have to grab his hand. Where in the past if they let go of Anthony for a second, he'd be gone. He said he(the Dad) still twitches and expects Anthony to take off but it doesn't happen! The Dad refers to it as having PTSD, because his body is so used to reacting to his son running off. I can relate to that, however, I think Dylan has made some improvements in this area as well, just not 100% yet. I have so much hope watching this little boys story, so I thought I'd pass it along!
The New Move
So it's been a while since I have posted anything, but things have been a little crazy. We have been looking for a house here and there and one came on market that we loved and we bought it! So we moved in on June 17th and have been trying to get unpacked and moved in along with every day life. We are pretty much unpacked but I am not a decorator, so NOTHING is decorated yet. We'll get to it eventually! Rick, Lori, Cody and Tessa came and helped get the big stuff and that helped more than they will ever know! We really have the best family, that will do anything to help us out, they are amazing!
With the new house comes adjustment! I feel like we have adjusted pretty well and Dylan hasn't been all that bad except for one little area:
In the first week at least 3 days I had to clean these types of messes up. They were done literally within 5 minutes of him not being watched! My other two kids wanted to make friends and we had met some of the "friends" so I kind of sent them to their house to see if they wanted to play. They ended up playing with the Slip and Slide, at a house that I had not even officially met the Mom, (she had dropped cinnamon rolls off one morning along with her phone number so we had sent texts to each other) so I probably looked like a bad Mother! She text me a picture and said the kids were having a blast! I told her I was sorry I couldn't come introduce myself because Desi was sleeping and I was watching Dylan like a hawk! I have explained to the neighbors we have met that Dylan has Autism because I feel if they know and see him out wandering they will be more aware and let us know rather than just assume a kid is out there playing.
Brandon and I feel like this past week has been his absolute worst. We don't know if it is the move and that we are just busy so it seems bad, or if he is in fact bad. You literally have to be by his side at all times or you get to clean up a not so fun mess. He is all over the place and is finding his new things he wants to do like: Throwing rocks or garbage down the window wells, Going out one door and making his way to the other door, Lifting up a piece of carpet that he found wasn't stapled down all the way, Getting into the Fridge and Pantry constantly. He has also gotten obsessed with the binki again and if he notices Desi with it, he pretty much tracks her down as if she is his prey. I kind of laugh at this because he is sneaky about it and waits until the exact right time to swoop in and steal it from her. At least, he is not to physical with her and does not harm her but sometimes he has a look in his eye like he just wants to squeeze her.
We are having a fence put in but it can't be done until the end of July. Once that is in then things should calm down a bit because we can actually go outside and he won't be able to wander around the front. We are counting down the days for this!
Dylan now has an official room and no crib! We have put him in a room with only the mattress and then we lock him in there! It has worked pretty good and he hasn't cried too much. One night I heard a loud crash and thought the blinds were coming down. I ran in there and everything looked fine. I then realized he was looking out the window. So we snuck out side and saw Dylan standing on the window sill inside the blinds, just watching the world go bye! When we met one of the other neighbors and told them about the Autism, they laughed and said they had seen him in the window and he looked to be posing! They thought it was funny and I said they will probably see it much more. As long as he is sleeping through the night, I don't care if it takes him a while to get to sleep, so other than him ruining the blinds this new arrangement has been great!
I went to my Aunts' Mom's funeral viewing tonight and her sister told me she has seen my cute kids on facebook and that she thinks I am a great Mother. I told her I promised if she saw me at home she would think differently. She said I am taking care of a special guy and am a special person to be given that. I just broke down because I am struggling with this so much right now. I know I am letting God down on the way I am handling this situation. I know there are so many other people that would do a much better job at this then I am and I really need to get my act together. I am not the right person for this, but because of that I am a determined person to help my son. I know he is in there and I know we will find him. I just need to give it time and for me to be given a WHOLE LOT OF PATIENCE!
With the new house comes adjustment! I feel like we have adjusted pretty well and Dylan hasn't been all that bad except for one little area:
In the first week at least 3 days I had to clean these types of messes up. They were done literally within 5 minutes of him not being watched! My other two kids wanted to make friends and we had met some of the "friends" so I kind of sent them to their house to see if they wanted to play. They ended up playing with the Slip and Slide, at a house that I had not even officially met the Mom, (she had dropped cinnamon rolls off one morning along with her phone number so we had sent texts to each other) so I probably looked like a bad Mother! She text me a picture and said the kids were having a blast! I told her I was sorry I couldn't come introduce myself because Desi was sleeping and I was watching Dylan like a hawk! I have explained to the neighbors we have met that Dylan has Autism because I feel if they know and see him out wandering they will be more aware and let us know rather than just assume a kid is out there playing.
Brandon and I feel like this past week has been his absolute worst. We don't know if it is the move and that we are just busy so it seems bad, or if he is in fact bad. You literally have to be by his side at all times or you get to clean up a not so fun mess. He is all over the place and is finding his new things he wants to do like: Throwing rocks or garbage down the window wells, Going out one door and making his way to the other door, Lifting up a piece of carpet that he found wasn't stapled down all the way, Getting into the Fridge and Pantry constantly. He has also gotten obsessed with the binki again and if he notices Desi with it, he pretty much tracks her down as if she is his prey. I kind of laugh at this because he is sneaky about it and waits until the exact right time to swoop in and steal it from her. At least, he is not to physical with her and does not harm her but sometimes he has a look in his eye like he just wants to squeeze her.
We are having a fence put in but it can't be done until the end of July. Once that is in then things should calm down a bit because we can actually go outside and he won't be able to wander around the front. We are counting down the days for this!
Dylan now has an official room and no crib! We have put him in a room with only the mattress and then we lock him in there! It has worked pretty good and he hasn't cried too much. One night I heard a loud crash and thought the blinds were coming down. I ran in there and everything looked fine. I then realized he was looking out the window. So we snuck out side and saw Dylan standing on the window sill inside the blinds, just watching the world go bye! When we met one of the other neighbors and told them about the Autism, they laughed and said they had seen him in the window and he looked to be posing! They thought it was funny and I said they will probably see it much more. As long as he is sleeping through the night, I don't care if it takes him a while to get to sleep, so other than him ruining the blinds this new arrangement has been great!
I went to my Aunts' Mom's funeral viewing tonight and her sister told me she has seen my cute kids on facebook and that she thinks I am a great Mother. I told her I promised if she saw me at home she would think differently. She said I am taking care of a special guy and am a special person to be given that. I just broke down because I am struggling with this so much right now. I know I am letting God down on the way I am handling this situation. I know there are so many other people that would do a much better job at this then I am and I really need to get my act together. I am not the right person for this, but because of that I am a determined person to help my son. I know he is in there and I know we will find him. I just need to give it time and for me to be given a WHOLE LOT OF PATIENCE!
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