We haven't really experienced a lot of changes, for the good or worse, in Dylan lately but he has been saying one word quite frequently! That word being Beebee which means Binky ha ha. We have tried getting him off of it several times but until we take it away from Desi, he will not give it up. He has hawk eyes for those things and can spot it a mile away! Back before the regression he called them "neenee's" so he is getting closer!
I went to my Mom's the other day and when we were leaving, I told Dylan to tell Grandma Bye. He reached out and flapped his arm a bit as if he was waving. I had him do it twice and he did the same thing both times. One time, I swear he attempted to mouth the word even!
Also the other day he was outside playing in our pool, completely naked of course, and he came running in and into Desi's room. A few seconds later, he came running out with his swimming suit in hand. Brandon put it on and out he went! It lasted a minute before he took it off, but that is progress!
Last week I had 2 dreams about Dylan. The first night, I dream that Dylan said a two word sentence. I don't remember much about it but I think Boston was crying and so Dylan said, "Boston crying." The second night I dream that Dylan was pointing, not using his whole hand but the correct way to point, at things he wanted. As small as these dreams sound, I will be beyond ecstatic when he does either one! They are HUGE in his world!
We have had a lot of Dylan wandering around lately, getting in the fridge, emptying toilet paper rolls, throwing huge tamptrums(only to lay on the ground kicking and screaming and hurting his hands or feet or head from slamming them down so hard) so Brandon and I have been worn out. Oh how could I forget, he has ruined the cd player in the van by putting at least 4 coins in it! We were able to go to Cherry Hill with my Aunt Angie and Grandma Red and all the family and enjoyed ourselves all day. Dylan loves swimming so that was the perfect get away! But at home, it has not been the funnest lately. Brandon suggested the other day that if he could send him some where for a year that would guarantee results he would do it! I suggested we send him to this John guy that is taking his son, Anthony, for the same treatments. They are seeing amazing results and John somehow manages to remain very positive throughout everything. I don't know how he does it but I admire him! Deep down, you know we could never ship Dylan off, because we would miss him like crazy, but I can keep dreaming that one day we will see more results or one day we can look back and be thankful that we have at least survived this stage!
Wednesday, August 5, 2015
Thursday, July 30, 2015
Summer School
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!
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!
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!
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