I love that he got the award for improving on understanding of words! That is a great step in communication and like I have said that is what I am seeking. Communication in any form, I will take!
Wednesday, July 27, 2016
School Certificate
Dylan brought this home on the last day of Summer School:
I love that he got the award for improving on understanding of words! That is a great step in communication and like I have said that is what I am seeking. Communication in any form, I will take!
I love that he got the award for improving on understanding of words! That is a great step in communication and like I have said that is what I am seeking. Communication in any form, I will take!
Monday, July 18, 2016
Making his own bed
Sunday, May 15, 2016
What we've been up to
Life has been crazy lately, we have had our ups and we have had our downs but we are here and we are surviving. We have had a few weeks where Dylan's behavior has gotten bad as in hitting us, slashing around on the ground when he doesn't get what he wants and attempting to bite. He is a strong 4 year old so if this continues, it is very worrisome. I was actually checking his backpack daily thinking there would be a "bad behavior" note from his school, but it took a couple weeks and then this showed up:
Luckily, I haven't seen one since and he has seemed to chill out a bit. Until yesterday when he bit through Brandon's shorts when he was frustrated that we were keeping him in his stroller so we could try and watch Brielle and Boston's Gymnastics performance! Lori ended up out in her car instead of watching like she had come to do. See it doesn't only affect us trying to watch the others do their things, but it also affects the grandparents from seeing stuff.
We were able to go to a little celebration thing for Autism families where they had all sort of games and activities set up for the Autism community. It was fun and I was surprised at everything they had especially because it was FREE. We ran into Melani from Early intervention! She was excited to see Dylan and I was glad that she remembered him and was the one that spotted him.
Dylan has decided he does not want to where diapers at all, not even at night. We decided to put a little "potty training potty" in his room, hoping he would use that instead of the floor. It is hit and miss, but his room quickly became a piss pot and smelled terrible! I didn't even like to walk in his room because who knows what you were walking on and it just felt nasty! I took it upon myself to tear out the carpet and lay down some hard floor. I talked to a lady at Home Depot and she suggested Vinyl Floor Planking that is waterproof, so I went with that. I called RC Willey and it was going to be like $800 for them to do it but I was able to do it for around $300. It is no where near professional looking but I think I did a pretty good job. The last row I wasn't quite sure how to do it since it was a tight fit and you can't really snap it in like the rest. So now I go on nightly, "Treasure Hunts" once I know he is asleep and we will just say 4 out of 7 nights(on average) I find some type of treasure. Occasionally it makes it in the designated spot, but most the times I quickly clean it up and mop it! As long as the "Waterproof" part is doing it's job, then the room should continue to smell ok right?! We also had an obscured window installed, it looks like rain running down the window, to block the neighbors of having a nightly "Dylan in the Nude" show!
Dylan figured out the car seat belt clip. I researched and found a belt clip for special needs kids and ordered it. It has a key thing so you can lock it in place and then it loops behind their neck so they can not push it down and climb through the belt. You seriously have to get creative constantly trying to beat him to the punch on things!
We were able to go to a little celebration thing for Autism families where they had all sort of games and activities set up for the Autism community. It was fun and I was surprised at everything they had especially because it was FREE. We ran into Melani from Early intervention! She was excited to see Dylan and I was glad that she remembered him and was the one that spotted him.
Dylan has decided he does not want to where diapers at all, not even at night. We decided to put a little "potty training potty" in his room, hoping he would use that instead of the floor. It is hit and miss, but his room quickly became a piss pot and smelled terrible! I didn't even like to walk in his room because who knows what you were walking on and it just felt nasty! I took it upon myself to tear out the carpet and lay down some hard floor. I talked to a lady at Home Depot and she suggested Vinyl Floor Planking that is waterproof, so I went with that. I called RC Willey and it was going to be like $800 for them to do it but I was able to do it for around $300. It is no where near professional looking but I think I did a pretty good job. The last row I wasn't quite sure how to do it since it was a tight fit and you can't really snap it in like the rest. So now I go on nightly, "Treasure Hunts" once I know he is asleep and we will just say 4 out of 7 nights(on average) I find some type of treasure. Occasionally it makes it in the designated spot, but most the times I quickly clean it up and mop it! As long as the "Waterproof" part is doing it's job, then the room should continue to smell ok right?! We also had an obscured window installed, it looks like rain running down the window, to block the neighbors of having a nightly "Dylan in the Nude" show!
I do find one consistent "treasure" every single night and that is this sweet little guy right here! He melts my heart and breaks my heart all at the same time! He is my handsome little Bubber Boo and I can't help but just sit and stare at him every night! As hard as it is at times, I could not imagine my life without this little guy in it!
Dylan figured out the car seat belt clip. I researched and found a belt clip for special needs kids and ordered it. It has a key thing so you can lock it in place and then it loops behind their neck so they can not push it down and climb through the belt. You seriously have to get creative constantly trying to beat him to the punch on things!
Autism Is Hard, Loving Him is Easy
AUTISM IS HARD, LOVING HIM IS EASY!
This will continue to be a motto for me. I absolutely HATE Autism and sorry if you are one that doesn't agree with that, but this has robbed my little boy of being a little boy. But LOVING him is easy, no matter the change, I love him the same. Would life be easy and a bit more enjoyable, YES but it is what it is and we have to make sure and live it to it's fullest because we never know how long we have, right?
Friday, April 1, 2016
2 years(in about a week)
Yesterday was 2 years ago that my Grandma Gene passed away and so with that comes the thoughts of Dylan's regression because it was the following week after the funeral that we really started noticing it. My Mom has said that along with losing her we also lost a part of Dylan, which I agree with whole heartily. Yesterday morning, Dylan woke up in an extremely bad mood. I had to carry him to the bus kicking and crying. He kept grabbing at the back of his head like it was hurting, so I wonder if he slept on it wrong. When he got home they said he had a bad day at school in general and so that just set the mood to have a "poor us" day.
I was driving the kids to Boston's gymnastics class and was thinking about my Grandma and how she would be feeling about the way I handle this circumstance with Dylan. My Grandma was the type of lady that never said anything bad about anybody! I can honestly only think of once or twice hearing her talk negative about someone and I couldn't blame her for what she was saying, I felt the same way. I respected her for how she was! I was thinking she may be disappointed at what I have turned into these past couple years and how I wish I could just talk to her. I know she couldn't make it any easier to deal with but just having her there would be awesome! As I was driving the feeling came over me that she knows I am doing the best I can and she is proud of me! I couldn't help but start to cry. Right then and there, I knew she is watching over me and cheering me on the best she can. I just need to have faith and keep the hope alive that we are getting somewhere! We can't do anything but keep on trying, right?
Then came bed time. I woke up, in the middle of the dream darn it, when I was having a dream about my Grandma Cleo. I had gone up to their house to visit, just like old times, except it was now. I pulled up to the house in my van and had left Dylan inside because I was just running in for a few minutes, I guess. I was talking to my Grandma in the kitchen and kept looking out to make sure the van was there. All of a sudden there was a sound at the door like someone was trying to get in, so I went to open it. It was Dylan and the I looked and the van was gone. I ran out trying to find it, thinking that he put it in drive and somehow got out, but it was nowhere to be seen. I thought someone must have taken it, but let Dylan out first.
At that point I didn't care where the van was or even to go look for it more. I was just glad that Dylan found his way to the door and didn't take off running. This door, by the way, is the last place I ever saw my Grandma alive at. I stopped to visit and as I was leaving my Grandma sat at the door and waved to me. She told me she loved me, which caught me completely by surprise because she never told me that before(or at least that I remember). I always knew she loved me and could feel it, so I never needed to be told. Us Molyneaux's just are not the type to share those feelings out loud, ha ha! As my morning has gone on, it hit me, that Grandma Cleo is there cheering me on as well. She is trying to help me understand that we may have "lost the car"(Dylan of 2 years ago) but DYLAN is still here. I need to be thankful that I have him and just help him along the best I can!
Experiences like these are great and make me appreciate the relationship I had with my grandparents while they were alive. Obviously, they are still a big part of my life and are probably up there trying to pound in my head to "keep the faith and hope alive!" They all(6 of them) played a major part in my childhood. I never realized until I got older and went on to college and met so many people that didn't have their grandparents close by, that I was spoiled! To me, grandparents need to be in their grandchildren's life and I wouldn't have it any other way. My children have been very blessed and their grandparents and even great grandparents are a major part of their life. I hope one day as they grow older they learn, like I have, that they are spoiled and need to cherish any chance they get, the relationship that they have been able to build with these grandparents!
I was driving the kids to Boston's gymnastics class and was thinking about my Grandma and how she would be feeling about the way I handle this circumstance with Dylan. My Grandma was the type of lady that never said anything bad about anybody! I can honestly only think of once or twice hearing her talk negative about someone and I couldn't blame her for what she was saying, I felt the same way. I respected her for how she was! I was thinking she may be disappointed at what I have turned into these past couple years and how I wish I could just talk to her. I know she couldn't make it any easier to deal with but just having her there would be awesome! As I was driving the feeling came over me that she knows I am doing the best I can and she is proud of me! I couldn't help but start to cry. Right then and there, I knew she is watching over me and cheering me on the best she can. I just need to have faith and keep the hope alive that we are getting somewhere! We can't do anything but keep on trying, right?
Then came bed time. I woke up, in the middle of the dream darn it, when I was having a dream about my Grandma Cleo. I had gone up to their house to visit, just like old times, except it was now. I pulled up to the house in my van and had left Dylan inside because I was just running in for a few minutes, I guess. I was talking to my Grandma in the kitchen and kept looking out to make sure the van was there. All of a sudden there was a sound at the door like someone was trying to get in, so I went to open it. It was Dylan and the I looked and the van was gone. I ran out trying to find it, thinking that he put it in drive and somehow got out, but it was nowhere to be seen. I thought someone must have taken it, but let Dylan out first.
At that point I didn't care where the van was or even to go look for it more. I was just glad that Dylan found his way to the door and didn't take off running. This door, by the way, is the last place I ever saw my Grandma alive at. I stopped to visit and as I was leaving my Grandma sat at the door and waved to me. She told me she loved me, which caught me completely by surprise because she never told me that before(or at least that I remember). I always knew she loved me and could feel it, so I never needed to be told. Us Molyneaux's just are not the type to share those feelings out loud, ha ha! As my morning has gone on, it hit me, that Grandma Cleo is there cheering me on as well. She is trying to help me understand that we may have "lost the car"(Dylan of 2 years ago) but DYLAN is still here. I need to be thankful that I have him and just help him along the best I can!
Experiences like these are great and make me appreciate the relationship I had with my grandparents while they were alive. Obviously, they are still a big part of my life and are probably up there trying to pound in my head to "keep the faith and hope alive!" They all(6 of them) played a major part in my childhood. I never realized until I got older and went on to college and met so many people that didn't have their grandparents close by, that I was spoiled! To me, grandparents need to be in their grandchildren's life and I wouldn't have it any other way. My children have been very blessed and their grandparents and even great grandparents are a major part of their life. I hope one day as they grow older they learn, like I have, that they are spoiled and need to cherish any chance they get, the relationship that they have been able to build with these grandparents!
Saturday, March 19, 2016
Parent Teacher Conference 3rd Term
I met with Dylan's teacher the other day and she is pretty excited about how well his understanding of words is coming along. She said in the past couple of months it seems to have clicked and he is really taking off! She had 35 words documented that they lay out 3 items and ask him for a specific one, that he was able to identify. She said probably with our family names and other things he knows that can't necessarily be tested, he probably has about 100 words in him! So maybe this is a start to the talking, who knows but I will take it! I do however have a little different opinion and think he has always had the understanding, but it's a matter of "if" he wants to do it. So we differ here, but she is with him almost everyday, so she is obviously seeing changes. Let's be honest, I do not work with him like she does either, so she probably knows my child better than I think I do in the learning setting! Other than that things have remained pretty much the same. Except for his social awareness! She said last year he could care less they were there but now he is coming to them for things and wants to be around them. I agree and have noticed more and more him coming around us and if we leave the room, he follows shortly after.
I love going to these meetings because she doesn't rush you out and I am usually there for an hour or so. I get to hear a lot from her and see what they see. I also love when she is talking about him and she pauses a bit and you can just tell she is picturing him in her mind and laughs! A few funny stories shared with me this time are:
- Dylan is starting to love certain songs they do and has a couple different ones he picks out. One of them being "5 little Monkeys"(not jumping on the bed but I forgot which one). He picked it out one day and a little boy that was sitting next to him is verbal but has a very low raspy(she said imagine a rapper in the making) voice. That little boy was singing along in his own little way and Dylan broke down with alligator tears and was so heart broken. They said you can tell no one raises their voice in our family. I told her the funny thing is anytime Brandon raises his voice(usually towards the other kids) we get this same reaction out of Dyl and have to really help him understand that it wasn't him! They decided to try and keep these two separated so this didn't happen again. Well the other day, the same scenario played out, except this time Dylan turned a stared down this little boy almost as if saying, "You are ruining MY song! STOP IT NOW!"
- They are working on verbal action commands such as, "Walk with me" and "Stop." To do this they go out in the hall. Dylan being Dylan is up and down the hall, getting into the fire extinguisher, grabbing at papers, you name it he is doing it! She said hopefully once this sets in, it will make it easier for us to go places! She said as busy as Dylan is they have one other kid that is a climber and in the windows, on chairs, would be in the rafters if they had them, so Dylan isn't so bad!
They are also focusing on the eye contact again, because once he started shaking his head and answering, "Yeah" the eye contact started going away. So now they are really focusing on all three. One day at school he really wanted some chips and they got "Ch" out of him a few times. They said to try and hold out as long as possible and try and get any sounds out of him! She also told me she spoke with the head Speech Therapist and shared her concern that she wonders if he has a processing disorder such as apraxia and the Speech Therapist told her to really focus on vowels because for some reason they tend to pick up on those first. So when Sherry pushes him on the swing for example, she says "Weeeeeeee" and really emphasizes the "EEEE". She said she doesn't know if it will do anything but she is willing to give it a go. This concern leads me to the head injury, because he WAS TALKING and it stopped after the head bonk. I asked her about testing and she said she doesn't really think there is much that can be done at the stage he is at. She said she is going to be in contact with the main speech lady some more and will see how he progresses over the next year and see what can be done then.
He has also qualified for Summer School, no surprise there, and I couldn't be more excited! I make sure to let Sherry know how much I appreciate her because I know with out them and this program we would not be seeing the progress we are seeing! Brandon must have made his mark at our very first meeting because she asked how he is doing and handling this. I told her it depends on the day, obviously, but for the most part doing good. She remembered him asking about the communication and if they felt it would come and we aren't seeing it so she knows that has to be hard. I told her about the ATEC test we have done and seemed interested in it. She had never heard about it, so she was going to look into it. I told her that we had had a rough couple weeks and I decided to take it and had him lower then previously so I had Brandon take it too. I told her once he saw that he also had him ranked lower that helped him to see he was making progress and lifted his spirits a bit. I really do love these teachers and am so glad that he is where he is!
I love going to these meetings because she doesn't rush you out and I am usually there for an hour or so. I get to hear a lot from her and see what they see. I also love when she is talking about him and she pauses a bit and you can just tell she is picturing him in her mind and laughs! A few funny stories shared with me this time are:
- Dylan is starting to love certain songs they do and has a couple different ones he picks out. One of them being "5 little Monkeys"(not jumping on the bed but I forgot which one). He picked it out one day and a little boy that was sitting next to him is verbal but has a very low raspy(she said imagine a rapper in the making) voice. That little boy was singing along in his own little way and Dylan broke down with alligator tears and was so heart broken. They said you can tell no one raises their voice in our family. I told her the funny thing is anytime Brandon raises his voice(usually towards the other kids) we get this same reaction out of Dyl and have to really help him understand that it wasn't him! They decided to try and keep these two separated so this didn't happen again. Well the other day, the same scenario played out, except this time Dylan turned a stared down this little boy almost as if saying, "You are ruining MY song! STOP IT NOW!"
- They are working on verbal action commands such as, "Walk with me" and "Stop." To do this they go out in the hall. Dylan being Dylan is up and down the hall, getting into the fire extinguisher, grabbing at papers, you name it he is doing it! She said hopefully once this sets in, it will make it easier for us to go places! She said as busy as Dylan is they have one other kid that is a climber and in the windows, on chairs, would be in the rafters if they had them, so Dylan isn't so bad!
They are also focusing on the eye contact again, because once he started shaking his head and answering, "Yeah" the eye contact started going away. So now they are really focusing on all three. One day at school he really wanted some chips and they got "Ch" out of him a few times. They said to try and hold out as long as possible and try and get any sounds out of him! She also told me she spoke with the head Speech Therapist and shared her concern that she wonders if he has a processing disorder such as apraxia and the Speech Therapist told her to really focus on vowels because for some reason they tend to pick up on those first. So when Sherry pushes him on the swing for example, she says "Weeeeeeee" and really emphasizes the "EEEE". She said she doesn't know if it will do anything but she is willing to give it a go. This concern leads me to the head injury, because he WAS TALKING and it stopped after the head bonk. I asked her about testing and she said she doesn't really think there is much that can be done at the stage he is at. She said she is going to be in contact with the main speech lady some more and will see how he progresses over the next year and see what can be done then.
He has also qualified for Summer School, no surprise there, and I couldn't be more excited! I make sure to let Sherry know how much I appreciate her because I know with out them and this program we would not be seeing the progress we are seeing! Brandon must have made his mark at our very first meeting because she asked how he is doing and handling this. I told her it depends on the day, obviously, but for the most part doing good. She remembered him asking about the communication and if they felt it would come and we aren't seeing it so she knows that has to be hard. I told her about the ATEC test we have done and seemed interested in it. She had never heard about it, so she was going to look into it. I told her that we had had a rough couple weeks and I decided to take it and had him lower then previously so I had Brandon take it too. I told her once he saw that he also had him ranked lower that helped him to see he was making progress and lifted his spirits a bit. I really do love these teachers and am so glad that he is where he is!
Thursday, February 25, 2016
MTHFR/23andMe/Dr Purser
On this Facebook group I am a part of, I have seen several people talk about a gene mutation(MTHFR) and wondered about getting that tested and where to go. This gene mutation is also linked to depression(mental illness) and so since reading people talk about it, I have been curious since depression is strong on my Mom's side. One day this lady that lived in our old neighborhood emailed me a link to a book that talks about this mutation. She is very big into the essential oils and has cured her self of cancer several times. Before Dylan and Autism, I thought she was a little strange because I was all about doctors knowing what is best for us and they wouldn't do anything to harm us. I still support Doctors but am a bit more weary of some of the stuff now being "born" into the Autism world. I have turned to Chris several times and she has been more than helpful and supportive with choices we have made with Dylan. So when she emailed me this book I decided to read it.
After reading the book I decided to call the Dr that wrote this book because lucky for me, he is in Lindon. He doesn't technically treat Autism patients but was willing to have me come talk to him and see where to go from there. I explained Dylan and the head bonk and told him I am not completely convinced that has nothing to do with this, he responded by saying he is not either! I also mentioned I am nervous to have any more testing on his brain that would have to sedate him because I have read some children have regressed due to anesthetics used. He said they have something they could use that is different and would do no harm there, but he wants to check the genes first. This test he normally runs, he doesn't think Dylan is old enough for so he wants us to do this 23andme genetics test. It is a test that you spit into this vial and then send it in and they come back showing you different genes you have inherited and what they mean and can cause. However, trying to get Dylan to spit into that just might not happen. I thought we could force him by holding his mouth open until enough drool came out(aka: torture him) but then read drool does not work and it has to be full on spit. He has actually been making spit bubbles lately, so who knows maybe he could do it.
You have to spit like 1/2 tsp or something and not eat for half hour prior to collecting the sample, so I don't know that we would be successful. The Dr also told me that I could take this test and that could give him some direction because the mother is always the one that passes this gene down! Not that that is good, but good in the sense that I can do it. He said this gets deep and shows a lot about you and said if I don't mind him looking into my medical well being then he would like me to do it. Of course I don't care what he finds out about me, if it is going to help my son then I am all for it! So I have this test at home but have recently come down with the stomach flu/cold/pink eye combination so I figured it might be better to do it when that is gone. I really could see the depression/mental illness that is in the family being linked to this in a way. But then that is where I get confused because if the Mother passes it on then as far as I know my Mother's Mother side didn't have mental illness but my Mother's Father's side did. So if the Mother carries it on, how did it get to my Mom? I am excited/nervous to see what this reveals about not only me and Dylan but ancestor history as well. Science is really amazing and they have come a long way! Once submitted it takes about 6-8 weeks to get the results, so I can't wait! Hopefully it gives us some more direction too.
One thing I find very interesting is that depending on the mutations you have, there are 2 specific ones he is looking at but could have different combinations, then that determines treatments. So if you have a certain mutation then lets just say that the medication a Dr prescribes most depressed people may actually cause more harm and make them suicidal. If you have a different mutation that same medication may help your symptoms. Or a different set of mutations it may completely wear you out, etc. So if you catch what I am saying if you know the mutation that you have, you can work around it and use different sets of medication or vitamins to help your body function more accurately. He said there are some vitamins out there that they have manipulated for these exact things. So here's to hoping that this really gives us some direction and another path to try!
After reading the book I decided to call the Dr that wrote this book because lucky for me, he is in Lindon. He doesn't technically treat Autism patients but was willing to have me come talk to him and see where to go from there. I explained Dylan and the head bonk and told him I am not completely convinced that has nothing to do with this, he responded by saying he is not either! I also mentioned I am nervous to have any more testing on his brain that would have to sedate him because I have read some children have regressed due to anesthetics used. He said they have something they could use that is different and would do no harm there, but he wants to check the genes first. This test he normally runs, he doesn't think Dylan is old enough for so he wants us to do this 23andme genetics test. It is a test that you spit into this vial and then send it in and they come back showing you different genes you have inherited and what they mean and can cause. However, trying to get Dylan to spit into that just might not happen. I thought we could force him by holding his mouth open until enough drool came out(aka: torture him) but then read drool does not work and it has to be full on spit. He has actually been making spit bubbles lately, so who knows maybe he could do it.
You have to spit like 1/2 tsp or something and not eat for half hour prior to collecting the sample, so I don't know that we would be successful. The Dr also told me that I could take this test and that could give him some direction because the mother is always the one that passes this gene down! Not that that is good, but good in the sense that I can do it. He said this gets deep and shows a lot about you and said if I don't mind him looking into my medical well being then he would like me to do it. Of course I don't care what he finds out about me, if it is going to help my son then I am all for it! So I have this test at home but have recently come down with the stomach flu/cold/pink eye combination so I figured it might be better to do it when that is gone. I really could see the depression/mental illness that is in the family being linked to this in a way. But then that is where I get confused because if the Mother passes it on then as far as I know my Mother's Mother side didn't have mental illness but my Mother's Father's side did. So if the Mother carries it on, how did it get to my Mom? I am excited/nervous to see what this reveals about not only me and Dylan but ancestor history as well. Science is really amazing and they have come a long way! Once submitted it takes about 6-8 weeks to get the results, so I can't wait! Hopefully it gives us some more direction too.
One thing I find very interesting is that depending on the mutations you have, there are 2 specific ones he is looking at but could have different combinations, then that determines treatments. So if you have a certain mutation then lets just say that the medication a Dr prescribes most depressed people may actually cause more harm and make them suicidal. If you have a different mutation that same medication may help your symptoms. Or a different set of mutations it may completely wear you out, etc. So if you catch what I am saying if you know the mutation that you have, you can work around it and use different sets of medication or vitamins to help your body function more accurately. He said there are some vitamins out there that they have manipulated for these exact things. So here's to hoping that this really gives us some direction and another path to try!
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