Supplements

I posted this photo of Dylan on the Stem Cell Facebook group the other day because I had seen several people mention a rash around the mouth.  They all seem to think it looks similar to what they saw on their kids and think it has to do with yeast.  Some other symptoms of yeast are: Strong Sugar and Refined Carbs cravings, Mood swings, ADHD type symptoms, brain fog, etc.  I have also heard random laughing and toe walking are signs as well.  This lady on the group had mentioned having good results with a few supplements and the latest was for yeast issues.  I decided to order the 3 main ones she talks about and give them a try!

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!

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:

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.

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!

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!

PT Conference

Tonight was Dylan's PT Conference and I was so excited to go because his teacher had expressed excitement when I spoke to her to set up the appointment!  From her point of view, his socialization is really starting to expand.  She feels that he is now "joining our world" and wants to be a part of it.  So he is realizing that their are others and not just himself, but he just doesn't quite know how to go about it yet.  He goes to them more like when they are at recess he comes to Mrs H and goes in for a hug.  She is not sure if he actually wants a hug or if he is trying to get her to spin him around because she does that sometimes too, but the fact that he is recognizing her as someone he can associate with, is a pretty big deal.

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!

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!"