Hair Cut

I remember there was a time in his life when I was cutting Boston's hair.  When I finished, Dylan came and sat on the chair and said, "Dy, Dy" and let me cut his hair, but not this time:

Dylan's hair had been getting long so we decided it was time for a haircut.  I honestly love his hair when it is a little longer, but I decided to try out cutting the sideburns off and that looked horrible.  I tried trimming them one day when he was asleep and half way through the first one, he woke up and wanted nothing to do with it.  I sent him to school that way too, ha ha.  When Brandon came home I had him hold him down so I could use the razor and shave both sideburns off.  He kicked and screamed and even the neighbors mentioned hearing him the next day!

We let him go a couple days that way and then decided to just get it over with and cut his hair.  I only know how to cut the boys hair one way and that is short with the electric razor, so that is what we do!  This was not a fun process and if you would have witnessed it, you probably would have thought we were really torturing the kid.  I even dare say, you would have thought we were trying to kill him, but I promise, we were only trying to cut his hair!  Brandon had to bear hug him several different ways because he would break free from kicking and squirming.  He was screaming and thrashing about.  I am surprised it turned out as good as it did, for the tantrum that he was throwing.  He had worked himself up in a sweat with in a few minutes and by the time we were done he was red an splotchy all over his body between his fear/anxiety and Brandon having to hold him down.  Good thing we can let his hair grow out for a few months until we have to do this again!!

You can't really see that well, but this picture was taken a good 30 minutes after the hair cut, but his cheeks are still pretty red.

I have also noticed he has been flapping his arms a lot lately.  He has never really be an arm flapper, so I will keep my eye on this and see how long it lasts.  He seems to do it quite a bit, but not really for one particular emotion.  I have seen him do it when he is happy, sad, excited, etc.

5 Weeks Down!

Life has been... life and a little crazy between school, Dylan's brother and sisters sports, dance, martial arts, Dylan being Dylan and tearing off the couch cushions, getting into the fridge, taking his diapers and clothes off, just the everyday life of the Gadd's!  We have had a few not so fun messes with the diaper coming off in the past week or two, however, when this happens I can't get mad at him because he finds his way to the bathroom.  If you are not right there when he poops his diaper, he usually takes it off and heads to the bathroom to dump it because he knows that is where it goes.  Just getting it there causes messes because he usually grabs the poop, getting it on his hands and wiping his dirty hands on the wall or toilet, but he is trying and that is why I can't really get mad!!  I just have to explain that he needs to come to me first, but Thanks for putting it in the toilet!

Other than saying a few words here and there we haven't really heard any one word consistently but I can see in his eyes that there are times that he is thinking and trying.  There has been times he looks me in the eye and says something and just stares me down almost as if waiting for my response.  It is hard to see this because I feel bad because he is trying but I have no idea what he wants so I try to guess and respond to what I think he may be saying.  At least, we have the idea of a conversation going!

5/10/2015
Mothers Day weekend was a great week for seeing little improvements and others opinions!  We went to Rick and Lori's and we were all impressed with how well Dylan "played" with the kids.  Most of the day was spent on the Trampoline with the other kids!  He didn't necessarily play "with" the kids, but he played near them ALL DAY LONG!  For Dylan that is big!  Usually he ends up pulling Lori around and wanting to go for a ride or go downstairs to watch a show(he did end up in her car to watch a show at one point but that was later on and he ended up falling asleep, so I think he was tired and several kids joined him).   There was one point on the tramp where I had to laugh because Trever's girlfriend son, Ethan, went up to Dylan and shoved a stuffed Olaf doll at him.  Brandon and I sat back to see Dylan's reaction and it was worth it.  Dylan just stops in his tracks, turns, bear hugs Ethan, and bam body slams him! It happened so fast but you could see the thought process go through Dylan's mind, that it was funny.  After Ethan tried it again and this time Dylan started swinging,  He is a tough kid, so we put a stop to it because we didn't want him hurting Ethan.  Although, he did not play with the kids it was so good to be able to sit back a bit, relax, and watch him out there "with" the other kids!  Trever said he noticed he seemed more focused!  That was good to hear because he hasn't seen him since probably a month or so before we did stem cells.

Week of 5/11-5/15/2015
This week I picked Dylan up from school and I walked up behind him where he was sitting on a chair looking through a book and was greeted with a kiss.  I bent down and said, "you ready to go home bud?"  He just looked up and instantly kissed me!  I loved it!  However, like I've said before I wonder if he tries to kiss his teachers because I always ask for a kiss when he wants something ha ha.  My Dad had stopped by this week as well and he was kind of giving Dylan a hard time for having the cushions all over the floor. Dylan reached up and kissed him and then at Brielle's dance review he greeted my Dad with a kiss then too.  When Lori picked the kids up for the dance review she was putting Desi's jacket on, so I grabbed Dylan to get his on.  He immediately reached up for Lori as if to say to me, "no, I am going with her!"  Then she picked him up and he gave her a kiss!  The topic of this week seems to be "Showing Affection!"  I love it!

Someone on this Facebook group that we are a part of, mentioned the little things that you need to pay attention to.  She mentioned her son no longer "mouths" things like he used to.  That made me realize that Dylan has stopped biting at his shirt like he used to do before stem cells.  He did that, then stopped and then right after started doing it again.  For the past week or so his shirt has not been stretched out and all wet because he isn't doing that, unless he has long sleeves on then he bites at the sleeves.  Like I said, the little things!

This past week he does seem to be more "all over the place" which we are into the 6-8 week post cells where they warned us he may regress and become more hyper!  Hyper is an understatement.  He is constantly taking cushions off the couch, jumping around, getting in the fridge, getting in the pantry, eating, you name it he is probably doing it.  The tantrums do seem to have tapered off a bit though!  He actually sat through Brielle's dance review for the most part, with a binky, but he sat there on someone's lap until the last 15 minutes or so.  I was amazed by that, especially since Lori was there because when he sees her, he just pulls her around.  He spent the majority of the dance review sitting on her lap and that, to me, is amazing!!!

He and Desi went to Lori's for the weekend, so it will be interesting to see what changes her and Rick notice where they aren't with him constantly.

This came home with Dylan the other day.  It is his Occupational Therapy progress report and it isn't too promising.  He hasn't made any improvement since January according to them, but we'll just keep waiting and watching.  I KNOW we are going to start seeing something soon!

Daddy's Bedtime Kiss

The last week has been a rough one on Brandon.  Boston's teacher informed me earlier this week that she has been concerned about him in the past few months because of his fine motor skills(he holds the pencil with his whole fist rather than the proper grasp) and his focus and attention at times.  She wondered if it would be good to have the school test him just so we could know how to help him. (I think Bos is fine, but he does have some attention problems at times, so worse case scenario ADD or something but I am not really concerned)  So I had told Brandon this and then with Dylan's tantrums and just Dylan's behavior in general and the stress of it all, it has just worn on him.  He is where I was several months ago, and just feels there is NOTHING we can do and NOT worth trying because it is a lost cause.  Don't get me wrong, because Brandon and I love this little guy and will do anything for him, but it is hard when you do and do and do and do and there is nothing coming from all that effort.  I am at the point where I have been letting him watch his shows a lot more than I should just because it is too exhausting to try and hold his attention to "try" and get him to play with you.  However, I have noticed this past week if the kids have been downstairs playing Dylan has wandered down there and stays down for 10-15 minutes and then comes back up and then will go back down after another 10 minutes.  So that is progress!

Anyway, so tonight we went to Brielle's soccer game and came home.  I am not sure why or what set Dylan off(sometimes Brandon holds him like a baby or holds him down to get him to pay attention and try to interact but that usually ends with Dylan doing this) but he was having a major fit.  I was getting the kids dinner and after 5-10 minutes of non stop Dylan screaming I asked Brandon what he was doing?  He said nothing, but did have him held "like a baby."  So I think he was just in Dylan's space and not wanted there.  Brandon got Dylan's pajamas on and he ate.  Then he headed to the pantry to find something else to munch on, so at that point and because it was bedtime, Brandon was ready to take him to bed.  He asked Dylan if he wanted to go to bed and Dylan grabbed his blanket and headed right up, so apparently he was ready!

I went up to help Brandon put the mattresses on top of the crib.  I always ask Dylan for a kiss and tell him I love him and will see him in the morning.  Sometimes I get a kiss in return others Desi and I have our faces smashed up to the crib waiting but never getting that kiss.  Tonight, I did not get that kiss.  I followed Brandon out the door and told Dylan "goodnight" and shut the door.  As soon as the door shut, Dylan yelled out.  I opened the door and walked over to the crib and asked "What was wrong?'  He held his hand out towards the door and just looked over there.  I looked up and Brandon was standing there, so he headed over.  As soon as Brandon bent down Dylan moved to the front of the crib and gave Brandon a kiss.  I asked for one, but still nothing!

This definitely made Brandon's night and I think showed him that although we have lots of tough days, these little moments make it all worth it.  I told Brandon that was probably Dylan's way for apologizing for their little "fight" tonight.  Or maybe Dylan had sensed the frustration in Brandon and wanted to remind him that he is worth it.  We are all a team and we are all going to be OK.  It is not going to be easy, but it is definitely going to be worth it!

One Month Down!

We have had many more tantrums and a little bit of aggression, but no big "aha" moments.  When I picked Dylan up from school yesterday, one of the aides was holding Dylan so he wouldn't escape, as the Teacher was doing the lesson at "Circle Time."  Mrs Heelis asked me if he had been aggressive at home because they had seen it this week, particularly that day.  I pointed to Desi and said, "she is the target."  He usually pushes her around or swats at her, but mainly because she thinks they are "bff's" and doesn't keep her distance and he wants that space.(I know one day, Desi will get that wish and they will be "bff's")  We went on our way, because they were in the middle of teaching and didn't want to interrupt  and ask more questions.

I went and picked him up today and it was a little different and more encouraging, not because they told me any amazing news, but because I could see and tell the love the teacher and the aides have for my son!  Just before Bos and I got to the class, I saw Dylan, (through the little window) wandering around and didn't know what I was walking into.  It looked like they were just finishing up lunch, so I think it was kind of a "free time" for those that were done eating.  Boston looked through the window for a minute and we walked in, just in time to witness his teacher running after him as he escaped out the back door which leads to a fenced in area and the playground.  They lead him over to me and I said, "have you had a busy day Dylan!"  Then Mrs Heelis laughed and said, "Let me tell you about his busy day!"  She continued to tell me how (and mentioned that I had warned her about this at the beginning) he decided it was lunch time at one point in the day and made his way to the fridge.  He got out several of the lunch bags and carried them to the table, almost as if he was saying it was time for lunch.  They got them put back in the fridge and then he made his way over to where they keep snacks and climbed up to help himself.  They gave in at this point and gave him something to hold him over until lunch time.  Then there was the "escaping out the door" which we got there to witness, ha ha.  She again told me that that was something I warned her about.  I don't think he was necessarily trying to escape, just wanted to play, ha ha.

Then one of the aides chimed in and said, "Oh no, let me tell you this one" and was laughing again.  During lunch time, someone had a slice of pizza(I am not sure if it was one of the teachers or a student) but Dylan was eyeing that pizza down the whole time the person was eating it.  Then as soon as the last bite went into the persons mouth Dylan jumped right up and, from what I understood, more or less tried getting that last bite for himself.  I am not sure if he was reaching and trying to pry their mouth open or swatting at them or what for sure, but it was apparent he wanted that pizza.  She said it was so funny and he was so smart because he KNEW that was the last bite! I told Dylan we'll send him pizza for lunch sometime.  The aide said, "can you say p-p-p-pizza?"  Dylan looked at me, in the eye mind you, and you could tell he was thinking about saying it, but nothing came out.

It is days like this that I love!  Even though these are not really "good news" stories, but they are funny and although Dyl keeps them busy, I can tell they really enjoy him!  I asked Mrs Heelis if he had been aggressive today and she said not as bad today, but it had been an all week thing.  She said yesterday was the worse, but it wasn't really bad considering what some kids can be like.  She said that at one point yesterday, Dylan just hauled off and shoved one of the kids knocking him over.  She did mention that that particular kid has a reputation of "pushing buttons" so she wasn't sure if he had done something to Dylan at some point in the day or if Dylan just shoved him just because.  From what she saw, it was the latter, but she also said she wouldn't be surprised if the kid just got to Dylan and he finally had enough.  She said it was as if Dylan was saying, "I am not going to be pushed around."  So she said it is good he is standing up for himself(if that was the case) but of course they are not encouraging that type of behavior.  From what I have seen on the Facebook Group page, some parents have seen aggressive behaviors in their kids for about 6 weeks and then it mellows out.  So we are 4 weeks out, so we'll see how it goes for the next 2 weeks and maybe things will settle down a bit!

Momma????

Brandon has asked me before what will I do when I hear "Momma" come from Dylan's mouth again?  I really don't know the answer to that one, but I CAN NOT wait to hear it!  My mind always goes back to just before Dylan started regressing.  This one night in particular a few weeks or so before the regression, he had learned to climb out of his crib and we kept sticking him back in, you know playing that fun game until he gave up.  Brandon got pretty creative(desperate) that night and rearranged his crib all sorts of ways to block the door, so if he climbed out, he wouldn't be able to get out of the room.  It took a while, but finally worked.  Any way that night and even any day he woke up from a nap or sleeping in general, I would hear MMMOOOOOOMMMY, in the cutest little voice and just typing this I hear that exact cute voice in my head.  I have missed that sooooooooo much and can not wait to hear it again.

So back to tonight.  I was turned around facing the stove making dinner.  Dylan had been coming to me to get me to turn the tv on his favorite show Team Umizoomi because Brandon kept turning it to something different.  But this one time was different!  I was facing the stove and all of a sudden I "think" I hear, MAAA-MA.  I turn around to find Dylan almost to me, not looking at me but he grabs my hand and pulls me towards the TV to where we keep the remotes.  I think, "I swear he just said Momma" but just continue on thinking I heard things.  Then Brandon says, "Momma, I think he just said Momma."  Then I knew I was not hearing things!  I don't know if he was actually saying it, but boy did it feel good to possibly hear it and know we are moving forward!

I didn't want to rub it in Brandon's face or anything, but I really wanted to hear it again.  About 10 minutes later I grabbed Dylan and asked, "Who am I?"  "Am I Momma?" a couple other ways trying to get him to say it, but nothing.  But I will not forget this, "The First Time I Heard Him Say Momma After His Regression!"

On another note:

He has been stripping down to his "birthday suit" again.  Today as soon as we walked in the door from getting him at school he did it.  I just let him run around that way for a good 20 minutes and decided I should see if he needed to go to the bathroom.  He sat down and with in 10 seconds pees and poops and hops off.  I grab him before he runs off so I can wipe him.  A few minutes later, still naked, I find him over by a desk of Brielle's, standing to the side and looking like he is concentrating.  Then it hit me, he was trying to poop again.  I run over and luckily happened to have some tin foil in my hand and catch it as it falls.  Darn it, I  thought we might be on to something just 3 minutes prior.  Oh well, it will come eventually!

"Race Track"

Lately Dylan seems to be hitting a lot more than he ever has when he is frustrated.  It is just little smacks but it makes me nervous what it could turn into when he gets really frustrated, especially with his little sister because she is so little and doesn't quite get whats going on so she tends to push his buttons!  I have noticed lately when this happens, Desi will slowly sneak behind me and lean up against me as if she is hugging me.  I don't know if she is trying to comfort me or looking to me for comfort.  I just hope that one day Dylan and Desi become the best friends they are supposed to be and the best friends that Desi wants to be!

Brielle lately seems to be trying more and more to interact with Dylan.  We have never really sat them down and told them what is exactly going on with Dylan.  We have mentioned he has a thing called Autism and more or less his brain doesn't work like ours and doesn't let him talk, play, communicate etc.  We have also told them if they ever see another person that doesn't talk or if they see similarities that they notice with Dylan to be extra kind and patient with that person because they probably have Autism, like Dylan and we know what comes with it.  I don't know how you really go about telling your other kids that their brother is "different" than others because I want him to be treated the same and be able to do the same things.  I think Brielle is getting to the age where she is noticing and picking up on more and wanting to help.

She will randomly get in his face and say, "Hi DyDy, give 5"(DyDy is what he used to call himself)  The grin on Dylan's face when she does this is awesome!  He seems so excited.  Tonight we had put him down to bed and was about to shut the door.  She ran in and said she wanted to tell Dylan goodnight.  She went over and put her face up to the crib and asked Dylan for a hug, she reached in but never got the hug back.  She walked out and told him goodnight and looked a little bit disappointed.  I told her even though she felt like Dylan didn't care about what she did, that I know it meant something to him.  I told her we just need to keep trying and working with him and one day he may just say, "Brielle remember when you gave me a hug in my crib!"  I just need her to know the little things mean a lot to him.

She said to me, "Those little things that don't mean a lot to us, mean a lot to Dylan because of his Autism.(When she uses the word it catches me off guard, because we don't say it a lot around here, we try to avoid it, I think)  His Brain isn't like ours.  Ours is a straight race track where we are almost to the finish line and his is a curvy track where he is stuck on one of the turns."  Where she got that analysis, I don't know, but she has a good point.  I am so excited she is getting to an age where she is going to be such a good help and support to her little brother!

Week 2

Other than a few more notes from Dylan's teacher, we haven't seen much changes with him and the tantrums are still coming!  By Wednesday Dylan had come down with a cough so his teacher said maybe whatever was bothering him finally broke through because he was a lot better for them on Thursday.

He woke up with hives on Thursday morning, but I put some anti itch concoction Lori had brought up on him and he seemed fine, so I sent him to school.

I went to get him up on Friday and was sound asleep and with the week he had, I figured I would keep him home.  Good thing I did, because he was on one that day!  I took the advice of his teachers and found some tie shoes(let me tell you that was not an easy task.  I looked at 4 different places and finally found one.  Everything is the slip on shoes or velcro or elastic "shoe laces" to make it easier for the parents).  Any way, I noticed the shoes he wears was literally falling apart.  I attempted to put the new shoes on and he was not having it.  I eventually, pretty much, sat on him to get his shoes on.  He's screaming, I am screaming, it was FUN!  I get his shoes on and in 2 minutes he is able to get one shoe off, but can't get the other.  I think his teachers and bus aide are not going to like his new shoes!  The day pretty much continued that way on and off.  Except I took them to Carl's Jr and he sat by me for a good 10-15 minutes eating, if you call eating fries eating.  Lately that is all he will really eat.  By Friday evening, he wasn't feeling like himself and just laid around, so I think his teacher was right.  He is coming down with something.  I just hope it is not something that requires an antibiotic, because we are supposed to stay away from them for the time being.

One thing I have noticed is he seems to be regressing a little bit.  I know it is early on but they said that most parents report a regression in 6-8 weeks.  He is starting to not like the feel of his clothes a lot like he did at one point.  We had a few "naked" episodes over the past couple days at the house and I hope he does not do that at school.  I told Brandon that I think we need to start the Brain Balance exercises up again and work on building the right side of his brain again.  I think that could help this pass a little quicker because when we were doing his exercises, he quit doing things like getting undressed.  So hopefully we can start squeezing that in again along with the millions of other things we have going on with him and the rest of the kids right now!

Saturday he still seemed a little out of it and broke out with hives a little bit.  We had a busy morning/afternoon, so I didn't spend a lot of time with him.  Now he has gone to his Grandparents house so hopefully he is feeling a bit better and not giving them a hard time!