Often times I think about writing another blog post and yet when I actually get a chance, I either forget, don't feel like typing, or best excuse-- I go to bed instead! But, can you blame me? I'm exhausted all the time. Not even sure why. I mean, yeah, I have a 14 month old that I chase around most of the day, housework to do, a 2 year old in the evenings and weekends-- who is constantly sick and whose Autism can sometimes give me a run for my money--, a 13 year old who mentally exhausts me, but thankfully is super helpful and a good kid, and a husband who works evenings leaving me with all 3 kids at once. Is that really an excuse to be so tired and needing to go to bed so early most of the time?
Still I am exhausted and no amount of sleep could probably make me feel 100% again. At this rate, all I ask for is one thing-- for my little ones to sleep through the entire night without coming into bed, waking up with nightmares or needing comfort, every single night. I mean, I love them and don't mind doing the "mom" thing most of the time, but when you spend half your night tending them and not sleeping, it can be pretty draining.
Besides being tired, I am also finding myself. After 33 years one would think they know themselves-- their wants, needs, desires, fears-- and yet I feel I know nothing about myself. I always say that what I have gone through in my life has made me who I am today-- but who is that?! I mean, I know I'm a mom and wife. But who *is* April? If you take away being a mother and wife, who is left-- what is left? I'm actually working on figuring that out, and so far, so good. I'm not super pleased with who I am discovering, but I am not horrified either! Haha. I know I can be someone better and I am working on that. My first step-- to bring myself closer to God. My relationship with Him isn't what I want or need. I truly desire to have a more intimate relationship with my Savior and so that is my first step in discovering myself. Really, who knows me better than He does?
There are other steps I am taking but that is number one, so I will leave it at that. Aside from discovering myself, life has been full of craziness. Ephraim has missed a lot of school due to sickness-- mostly ear infections. He has finally been referred for tubes and his surgery is on June 3rd. Lorelai will be having tubes as well-- we just have to wait until her pediatrician is back (June 3rd, coincidentally) for her referral. (We know she will get one because the last time we saw the pediatrician she said one more ear infection for both kids would lead to tubes and while she was on vacation we took L to the ER and sure enough, she has another ear infection!)
Bretton did track and field this spring and I am so pleased! To be honest, ever since he was a little boy I have thought "If he does track and field just once in his life, it will be a dream come true!" So, my dream was fulfilled! I hope he sticks with it next year, but if not, I truly enjoyed seeing him participate this year. He even made it to the Championship meet-- something you have to qualify for. He participated in the 4x100, discus, javelin (not the typical kind for safety reasons), and shot put. He qualified for shot put and discus. I did all the throwing events as well, so it was nice to reminisce and to be able to give him pointers.
Anyway, I am off for now. I need to make breakfast, get Bretton up so he can mow some lawns, and hopefully get some cleaning/organizing done today.
Monday, May 27, 2013
Monday, April 1, 2013
April is Autism Awareness Month
It has been a long time since I have written. There is a lot to catch up on, but it will need to wait for another time. This post is for and about Autism Awareness. April is Autism Awareness Month, and if you know me or have read my blog, then you know that my youngest son has Autism and I have felt deeply in my heart that I need to help spread awareness. Not just having people know the word. But to know Autism-- or at least, to know it as much as they can without experiencing it themselves. Every case of Autism is very different than the next one-- sort of like snowflakes. :)
So, my plan is to try to post at least 4 times in April with facts and information about Autism. I will also include how certain things in our daily lives are affected by Autism. Don't forget to share my blog and to leave comments for me about your experiences or thoughts regarding Autism. (Keep in mind that I monitor my comments and will not keep negative and rude comments, or any that try to cause arguments.)
So, let me say this for tonight: My family is participating in the "Light It Up Blue" campaign that was founded by the organization Autism Speaks. There is huge controversy on them and their tactics. While I personally disagree with many things that they do, or don't do in some cases, I don't feel that it is supporting Autism Speaks, per se, by lighting our home blue, or wearing blue,etc. Just supporting Autism. I think that the idea behind the blue lights is mainly to spread awareness. We do not financially support Autism Speaks but we do feel that more awareness and education is needed, and therefore we are "going blue". We see it as a way to get the word out and bring Autism "to light".
We already have our lights on. They will be on all month. I made some shirts that we will wear, and I have a few other things up my sleeves if all works out. But really, in the end, our main goal as a family who deals with Autism every day is to spread more than awareness. We want to spread understanding, acceptance, education, and advocate on our son's behalf.
So, my plan is to try to post at least 4 times in April with facts and information about Autism. I will also include how certain things in our daily lives are affected by Autism. Don't forget to share my blog and to leave comments for me about your experiences or thoughts regarding Autism. (Keep in mind that I monitor my comments and will not keep negative and rude comments, or any that try to cause arguments.)
So, let me say this for tonight: My family is participating in the "Light It Up Blue" campaign that was founded by the organization Autism Speaks. There is huge controversy on them and their tactics. While I personally disagree with many things that they do, or don't do in some cases, I don't feel that it is supporting Autism Speaks, per se, by lighting our home blue, or wearing blue,etc. Just supporting Autism. I think that the idea behind the blue lights is mainly to spread awareness. We do not financially support Autism Speaks but we do feel that more awareness and education is needed, and therefore we are "going blue". We see it as a way to get the word out and bring Autism "to light".
We already have our lights on. They will be on all month. I made some shirts that we will wear, and I have a few other things up my sleeves if all works out. But really, in the end, our main goal as a family who deals with Autism every day is to spread more than awareness. We want to spread understanding, acceptance, education, and advocate on our son's behalf.
Monday, December 31, 2012
Pinterest Sunday: Hershey Cake
So, if I am going to do the Pinterest thing and blog about it (see my last blog post) then I figure I should try to stick with doing it on the same day each week. I mean, blog about it on the same day, not necessarily make the item that day.
It just so happens that I did make one today, and it was a Hershey Chocolate Cake found here. The recipe calls for dark cocoa, but I didn't have any. After having a piece, I am OK with it being regular. It was SO chocolatey!! Even Bretton, who will eat as much cake as possible said it was very rich and didn't completely finish it.
The recipe also calls for boiling water, but the person whose blog I got it from used coffee. I used the coffee. It came out great, and you couldn't taste the coffee. The cake itself was moist, but not overly so. The frosting was good, but had a distinct cocoa taste to it, so next time I make it I will be cutting down a bit on the cocoa in the frosting. Otherwise, it was a fabulous recipe and definitely a great choice for someone who wants a rich chocolate "kick"!
Oh, and I just made a 2 layer cake, which meant using the recipe as is, but doubled the frosting as most frosting recipes seem to not be enough. This was *more* than enough when doubled, so I may not double it next time and see how much it really turns out to be.
I took pictures, but can't upload for some reason.
It just so happens that I did make one today, and it was a Hershey Chocolate Cake found here. The recipe calls for dark cocoa, but I didn't have any. After having a piece, I am OK with it being regular. It was SO chocolatey!! Even Bretton, who will eat as much cake as possible said it was very rich and didn't completely finish it.
The recipe also calls for boiling water, but the person whose blog I got it from used coffee. I used the coffee. It came out great, and you couldn't taste the coffee. The cake itself was moist, but not overly so. The frosting was good, but had a distinct cocoa taste to it, so next time I make it I will be cutting down a bit on the cocoa in the frosting. Otherwise, it was a fabulous recipe and definitely a great choice for someone who wants a rich chocolate "kick"!
Oh, and I just made a 2 layer cake, which meant using the recipe as is, but doubled the frosting as most frosting recipes seem to not be enough. This was *more* than enough when doubled, so I may not double it next time and see how much it really turns out to be.
I took pictures, but can't upload for some reason.
Sunday, December 30, 2012
Gotta Love Pinterest
I could spend all day on Pinterest. Which is scary. In many ways. Like, wasting my time on there instead of doing things that need to be done or spending time with my family (not that I spend all day on it!). Or making everything I find on there that I like. That would lead to me being another 100+ pounds overweight and in debt from crafts!
Since I love it so much, I thought I am going to try at least 1 thing a week from there. Whether it be 1 meal, one dessert, one craft, one site to read, etc. Then, I will try to post on here about what that one thing I chose was, why, how it turned out, etc. I'm starting today.
The first Pinterest item up is this oh so lovely looking Hershey's Dark Chocolate cake. My problem though, is that I didn't have any dark chocolate cocoa on hand, so I am just using regular. We'll see how it turns out later. I found the recipe here, but she found it on Hershey's site.
I'll report back later. I need to go get the first half out of the oven!
Since I love it so much, I thought I am going to try at least 1 thing a week from there. Whether it be 1 meal, one dessert, one craft, one site to read, etc. Then, I will try to post on here about what that one thing I chose was, why, how it turned out, etc. I'm starting today.
The first Pinterest item up is this oh so lovely looking Hershey's Dark Chocolate cake. My problem though, is that I didn't have any dark chocolate cocoa on hand, so I am just using regular. We'll see how it turns out later. I found the recipe here, but she found it on Hershey's site.
I'll report back later. I need to go get the first half out of the oven!
Friday, December 28, 2012
Progress
Ephraim is doing well. There are times where it seems like he has regressed in many areas, and we wonder when he is ever going to "get it"-- to learn the new things we are teaching him, but then in therapy sessions like today, we see it. Progress. The greatest part: we aren't the only ones seeing it. His therapist said in the past few weeks he has seen great progress in Ephraim, especially in his communication.
Ephraim is still considered non-verbal, but he has started saying a few "words" here and there. (If there is a beginning sound that relates to the item he wants/needs, it is considered a word. Such as "ye", can mean that he said "yes", if in the correct context.) He has said: more, eat, yes, no, and go, on a fairly regular basis. A great sign that verbal language will probably occur at some point in the future. This is exciting, but we also are aware that it might not happen, and so we aren't getting our hopes up.
E has also been signing a lot more lately as well. He uses "more" on a consistent basis, as well as "eat" (for both eating and drinking) and "all done". We are really trying to work on "help" as well, since often times he gets frustrated and needs help but has no way to tell us other than with negative behaviors.
He is really enjoying, and quite good at, basic puzzles, shape sorters, etc. He has also increased his joint-attention by more than 50%!! This alone is HUGE! Joint-attention will help him in so many ways, both socially and academically. His joint-attention with me is by far the best. He will sit and look at me for 20-30 minutes sometimes. He stares at me, laughs, plays with my facial features. I use this to engage him in learning by asking things like: "That's mama's nose, now where's Ephraim's nose?" "Where are my eyes?" He has never been able to point to things, especially when asked, but he has started to point to facial features in the past week or so when we have good joint-attention.
One of the hardest things right now, learning wise, is PECS. He really doesn't want to pick up the symbol, and when he does, he definitely doesn't want to release it! But, there is still improvement seen here too, and that is all we can ask for. His therapist thinks that within a few weeks at school he will be ready to move onto phase 2, which means that he will have a pretty good handle on reaching for the symbol he wants (not the item), picking up the symbol, and releasing it into someone's hand, [with lots of prompting occurring] (phase 1). Phase 2 is learning to get the symbol, wherever it may be, and take it to someone without prompting. He hates being prompted, so hopefully he will like phase 2 better and take to it more quickly.
The trade off for him doing so well in some areas though, is that he regressing in other areas, and has more negative behaviors occur. He also has more stereotypies (no that's not spelled wrong, and yes, it is a word), which we often have to stop, which is not an easy task. His sleeping habits have gotten worse, but I beleive in time that will come back around. We can only ask so much of him right now, he is is doing great, so we can't complain (too much- haha) about his sleep habits or negative behaviors. We can only work on those as well and hope that as he gets older things will fall into place.
Ephraim is still considered non-verbal, but he has started saying a few "words" here and there. (If there is a beginning sound that relates to the item he wants/needs, it is considered a word. Such as "ye", can mean that he said "yes", if in the correct context.) He has said: more, eat, yes, no, and go, on a fairly regular basis. A great sign that verbal language will probably occur at some point in the future. This is exciting, but we also are aware that it might not happen, and so we aren't getting our hopes up.
E has also been signing a lot more lately as well. He uses "more" on a consistent basis, as well as "eat" (for both eating and drinking) and "all done". We are really trying to work on "help" as well, since often times he gets frustrated and needs help but has no way to tell us other than with negative behaviors.
He is really enjoying, and quite good at, basic puzzles, shape sorters, etc. He has also increased his joint-attention by more than 50%!! This alone is HUGE! Joint-attention will help him in so many ways, both socially and academically. His joint-attention with me is by far the best. He will sit and look at me for 20-30 minutes sometimes. He stares at me, laughs, plays with my facial features. I use this to engage him in learning by asking things like: "That's mama's nose, now where's Ephraim's nose?" "Where are my eyes?" He has never been able to point to things, especially when asked, but he has started to point to facial features in the past week or so when we have good joint-attention.
One of the hardest things right now, learning wise, is PECS. He really doesn't want to pick up the symbol, and when he does, he definitely doesn't want to release it! But, there is still improvement seen here too, and that is all we can ask for. His therapist thinks that within a few weeks at school he will be ready to move onto phase 2, which means that he will have a pretty good handle on reaching for the symbol he wants (not the item), picking up the symbol, and releasing it into someone's hand, [with lots of prompting occurring] (phase 1). Phase 2 is learning to get the symbol, wherever it may be, and take it to someone without prompting. He hates being prompted, so hopefully he will like phase 2 better and take to it more quickly.
The trade off for him doing so well in some areas though, is that he regressing in other areas, and has more negative behaviors occur. He also has more stereotypies (no that's not spelled wrong, and yes, it is a word), which we often have to stop, which is not an easy task. His sleeping habits have gotten worse, but I beleive in time that will come back around. We can only ask so much of him right now, he is is doing great, so we can't complain (too much- haha) about his sleep habits or negative behaviors. We can only work on those as well and hope that as he gets older things will fall into place.
Wednesday, December 26, 2012
Life Changes
As the few of you who read my blog know, I am a busy person (probably not as busy as many, but busy enough) and we have had a lot of changes recently. I haven't even thought about this blog-- though I wish I had. I so want to keep up, but my life doesn't seem to allow me to. When I do have a chance to write, I don't feel like it!
Anyway, one of the changes was our big move-- and hopefully last move! My in-laws generously bought a house for us (we will "rent" until the mortgage is paid off) and we are now living much closer to Eric's job and in the school district where Bretton attends so he is now home with us for good! Life is much easier in the way of transportation and getting places when you live closer to town! The down side is we are now a 1/2 hour from our family, which is hard with the kids...
Another change, which leads into yet another change, is Ephraim is receiving in home services/therapy (which I might have mentioned before). He really doesn't like it much, especially PECS, but he is getting better and doing well. While in home services are great, I am unable to give him all the time and attention he truly needs and deserves. With Lorelai also needing attention, I can't keep up on all the things that E needs in order to stay "in our world". He really needs one on one as much as possible. So, it was a super hard decision for us, but we have decided to send him to Woodfords Family Services. He will start out 3 days a week, 6 hour days. Eventually, we will move him up to full time. The school is an hour away, and he will be riding with someone we don't yet know. I think that is the hardest part for me. But, others do it all the time, and I know that we have to do what we have to do in order to get him the best services possible. This program is an ABA program with mostly children diagnosed with Autism attending. On the days he isn't there, we will still have CDS come for in home services and we are going to be doing some in depth research on floor time therapy, as that is what I believe would be a better choice-- something very appropriate for his age. We will incorporate that into his nightly routine.
Of course, Eric and I are both worried sick about sending him. Not because we worry about him being cared for and learning, but because we have never sent him to preschool or daycare or anywhere really. A few family members and friends have had him, but not on a regular basis. Eric was with him for the first 1.5 years of his life and I have been with him since then. Like many children with Autism, Ephraim doesn't mind being around other people when he is able to be in his own world, doing his own thing. But, when you request for him to do something outside of his world, it is hard enough to be his parent whom he knows and trusts. With other people, it isn't so easy. If he doesn't know you at all, or only knows you as someone who makes him "do work" then it is very challenging.
Obviously, the people at this place are trained in dealing with this, but when I think about him acting up, having a hard time responding to them, being resistant, wondering where his mommy is, etc: it breaks my heart. I know the first few days, maybe even weeks is going to be hard. Especially since he may be confused as he will only be there every other week day. He will eventually go full time, but right now we want to see how he responds to it in general. I don't honestly know if we are making the right decision by only doing part time or if we should just start right off full time.
At this point, Eric and I just hope that it works out for all of us, and that Ephraim can get into a good routine quickly. We also hope that Eric can figure out what to do about work. He works many evenings, which would mean he wouldn't see Ephraim much at all. Ideally, he would like to have a set schedule with his guaranteed 30 hours, but that isn't going to happen. As it is he is lucky to get 30 hours, but has to work whatever is available to get them. Plus, he is starting to wish he was home and I was working! Sheesh! I always thought I wanted to be a SAHM. Part of me still does, but I have to be honest: part of me feels overwhelmed and alone. I sometimes wish I was working and that we had just put the kids into daycare. Of course, of all the reasons that we decided that I would resign from my job and stay home was because E needed a lot of extra time, attention, and therapies that he wouldn't get at just any daycare center. Don't get me wrong, I love being home, too! I'm not sure if anyone would really understand, and I am sure I have been, and am being, judged for feeling this way, but it is what it is.
So, a week from today, E will start school. I have to believe it is the best decision we can make for him for now. Eric and I are going to wait it out a bit to see what happens, then make decisions regarding whether I should work part time, or just stay home with Lorelai. We could certainly use the extra money. If you want to call it extra. Anything we bring home, now or in the future, goes to bills. There is no such thing as extra money-- though we so wish there was. But that is another whole blog post, that I probably won't ever write. Ha!
Lastly, I have started a small business of sorts. If one can call it a business when one doesn't get much business at all! Though, I have received a few orders and am thankful for those, I was really hoping that I could make enough money to help pay a bill or two so that we don't feel so strapped every month. :\ I'm going to attempt some new/more products in the coming month or so and if I still don't get much business, then I guess it is a flop.
Anyway, one of the changes was our big move-- and hopefully last move! My in-laws generously bought a house for us (we will "rent" until the mortgage is paid off) and we are now living much closer to Eric's job and in the school district where Bretton attends so he is now home with us for good! Life is much easier in the way of transportation and getting places when you live closer to town! The down side is we are now a 1/2 hour from our family, which is hard with the kids...
Another change, which leads into yet another change, is Ephraim is receiving in home services/therapy (which I might have mentioned before). He really doesn't like it much, especially PECS, but he is getting better and doing well. While in home services are great, I am unable to give him all the time and attention he truly needs and deserves. With Lorelai also needing attention, I can't keep up on all the things that E needs in order to stay "in our world". He really needs one on one as much as possible. So, it was a super hard decision for us, but we have decided to send him to Woodfords Family Services. He will start out 3 days a week, 6 hour days. Eventually, we will move him up to full time. The school is an hour away, and he will be riding with someone we don't yet know. I think that is the hardest part for me. But, others do it all the time, and I know that we have to do what we have to do in order to get him the best services possible. This program is an ABA program with mostly children diagnosed with Autism attending. On the days he isn't there, we will still have CDS come for in home services and we are going to be doing some in depth research on floor time therapy, as that is what I believe would be a better choice-- something very appropriate for his age. We will incorporate that into his nightly routine.
Of course, Eric and I are both worried sick about sending him. Not because we worry about him being cared for and learning, but because we have never sent him to preschool or daycare or anywhere really. A few family members and friends have had him, but not on a regular basis. Eric was with him for the first 1.5 years of his life and I have been with him since then. Like many children with Autism, Ephraim doesn't mind being around other people when he is able to be in his own world, doing his own thing. But, when you request for him to do something outside of his world, it is hard enough to be his parent whom he knows and trusts. With other people, it isn't so easy. If he doesn't know you at all, or only knows you as someone who makes him "do work" then it is very challenging.
Obviously, the people at this place are trained in dealing with this, but when I think about him acting up, having a hard time responding to them, being resistant, wondering where his mommy is, etc: it breaks my heart. I know the first few days, maybe even weeks is going to be hard. Especially since he may be confused as he will only be there every other week day. He will eventually go full time, but right now we want to see how he responds to it in general. I don't honestly know if we are making the right decision by only doing part time or if we should just start right off full time.
At this point, Eric and I just hope that it works out for all of us, and that Ephraim can get into a good routine quickly. We also hope that Eric can figure out what to do about work. He works many evenings, which would mean he wouldn't see Ephraim much at all. Ideally, he would like to have a set schedule with his guaranteed 30 hours, but that isn't going to happen. As it is he is lucky to get 30 hours, but has to work whatever is available to get them. Plus, he is starting to wish he was home and I was working! Sheesh! I always thought I wanted to be a SAHM. Part of me still does, but I have to be honest: part of me feels overwhelmed and alone. I sometimes wish I was working and that we had just put the kids into daycare. Of course, of all the reasons that we decided that I would resign from my job and stay home was because E needed a lot of extra time, attention, and therapies that he wouldn't get at just any daycare center. Don't get me wrong, I love being home, too! I'm not sure if anyone would really understand, and I am sure I have been, and am being, judged for feeling this way, but it is what it is.
So, a week from today, E will start school. I have to believe it is the best decision we can make for him for now. Eric and I are going to wait it out a bit to see what happens, then make decisions regarding whether I should work part time, or just stay home with Lorelai. We could certainly use the extra money. If you want to call it extra. Anything we bring home, now or in the future, goes to bills. There is no such thing as extra money-- though we so wish there was. But that is another whole blog post, that I probably won't ever write. Ha!
Lastly, I have started a small business of sorts. If one can call it a business when one doesn't get much business at all! Though, I have received a few orders and am thankful for those, I was really hoping that I could make enough money to help pay a bill or two so that we don't feel so strapped every month. :\ I'm going to attempt some new/more products in the coming month or so and if I still don't get much business, then I guess it is a flop.
Saturday, September 29, 2012
Alert Bracelet or Not?
This past spring Ephraim had to be taken by ambulance to the hospital for some stomach issues. He was constantly being asked questions that he couldn't answer, and probably had no knowledge of them even speaking to him. Luckily, I was there with him the whole time, but even then when I said he was non-verbal, they would still try to get him to talk to them. Ever since then I have wondered if we should have some sort of informational jewelry or whatever for him (and even the other children). I think about how there is always the possibility that something could happen and Eric and/or I may not be there or be able to respond. If this was to happen, the youngest 2 children would have no way to give any information about themselves or us.
Now, even more so, with Ephraim's official diagnosis, Eric and I are leaning towards getting him a bracelet (or something) that states his name, date of birth, and the fact that he has Autism and is non-verbal. But, am I jumping the gun? I think sometimes that maybe I am, but then I think about how Ephraim doesn't respond to his own name, not to mention to people he doesn't know. I don't want to "advertise" info, but on the other hand, it is vital information to make sure he is safe and understood in the event of an emergency.
So, if I do get him one, do I put all the information on the back of the band, which would mean the person reading it would need to take it off him, which may or may not be a disaster in and of itself? Or do I put the information on the front where anyone can read it?
To be honest, I'm not ashamed of his diagnosis and lack of verbal skills. That isn't why I'm not sure about putting in on the front. I am more concerned that others may take it the wrong way, or that he himself may one day find it to be a "label" or a "flag" to others. Does this make any sense?
I am considering doing one for both Bretton and Lorelai as well, considering anything can happen to either of them as well and Eric and I may not be there or respondent for them either.
So, what do you think? I am looking for honest, yet respectful, opinions.
Now, even more so, with Ephraim's official diagnosis, Eric and I are leaning towards getting him a bracelet (or something) that states his name, date of birth, and the fact that he has Autism and is non-verbal. But, am I jumping the gun? I think sometimes that maybe I am, but then I think about how Ephraim doesn't respond to his own name, not to mention to people he doesn't know. I don't want to "advertise" info, but on the other hand, it is vital information to make sure he is safe and understood in the event of an emergency.
So, if I do get him one, do I put all the information on the back of the band, which would mean the person reading it would need to take it off him, which may or may not be a disaster in and of itself? Or do I put the information on the front where anyone can read it?
To be honest, I'm not ashamed of his diagnosis and lack of verbal skills. That isn't why I'm not sure about putting in on the front. I am more concerned that others may take it the wrong way, or that he himself may one day find it to be a "label" or a "flag" to others. Does this make any sense?
I am considering doing one for both Bretton and Lorelai as well, considering anything can happen to either of them as well and Eric and I may not be there or respondent for them either.
So, what do you think? I am looking for honest, yet respectful, opinions.
Friday, September 21, 2012
A Bittersweet Day: My son has Autism
Today, Ephraim had his psychological evaluation. In case you don't remember, we have been pretty sure for a long time that the results would be Autism Spectrum Disorder, but since every person with Autism is different, just as every person who doesn't have Autism is different, we couldn't be sure. We wanted an evaluation done as soon as possible as we know how important it can be to start services early. It took awhile, but we finally got the referral and the process started.
The two part observation was done prior to today and the information from that was sent to the psychologist. Today, the psychologist asked us a million questions, observed Ephraim playing at the same time, and then did some of his own "testing" and interaction time with Ephraim. Two huge thumbs up to both the psychologist and to Ephraim! Dr. D (that is what I will call him) was great with Ephraim and you could see that he loves children and his job. (He said he has evaluated over 6,000 children/teens!) Ephraim did awesome. He was his usual happy self, and allowed Dr. D to do a lot of things that we weren't sure he would allow. E did push him away a few times, "complained" about a number of things, but all in all he handled the whole session (about 2.5 hours) very well.
Dr. D explained at the end of the evaluation what he thought, but Eric and I weren't sure what he meant exactly so when he asked if we had questions I said I wanted clarification. Dr. D had made it sound to us like he needed to score the test first but did see autistic tendencies in Ephraim. When I repeated what I heard him say and asked if that meant he was going to be making his diagnosis after the scoring, he hesitantly said, "No. My report will say that Ephraim has Autism Spectrum Disorder." I asked about the hesitation and he explained that he didn't want to "blow us away" and Eric and I immediately told him not to worry about that! We already knew it and were just glad to finally have the diagnosis.
After we left, Eric and I talked about it. We agreed it was a bittersweet day. We are glad to finally have a diagnosis. We are relieved even, as now we know that we can get the services he needs. But, we are obviously saddened that we were right. Part of me wishes that it was in our heads, but part of me doesn't.
I love my son just the way he is, and wouldn't change him for the world!
The two part observation was done prior to today and the information from that was sent to the psychologist. Today, the psychologist asked us a million questions, observed Ephraim playing at the same time, and then did some of his own "testing" and interaction time with Ephraim. Two huge thumbs up to both the psychologist and to Ephraim! Dr. D (that is what I will call him) was great with Ephraim and you could see that he loves children and his job. (He said he has evaluated over 6,000 children/teens!) Ephraim did awesome. He was his usual happy self, and allowed Dr. D to do a lot of things that we weren't sure he would allow. E did push him away a few times, "complained" about a number of things, but all in all he handled the whole session (about 2.5 hours) very well.
Dr. D explained at the end of the evaluation what he thought, but Eric and I weren't sure what he meant exactly so when he asked if we had questions I said I wanted clarification. Dr. D had made it sound to us like he needed to score the test first but did see autistic tendencies in Ephraim. When I repeated what I heard him say and asked if that meant he was going to be making his diagnosis after the scoring, he hesitantly said, "No. My report will say that Ephraim has Autism Spectrum Disorder." I asked about the hesitation and he explained that he didn't want to "blow us away" and Eric and I immediately told him not to worry about that! We already knew it and were just glad to finally have the diagnosis.
After we left, Eric and I talked about it. We agreed it was a bittersweet day. We are glad to finally have a diagnosis. We are relieved even, as now we know that we can get the services he needs. But, we are obviously saddened that we were right. Part of me wishes that it was in our heads, but part of me doesn't.
I love my son just the way he is, and wouldn't change him for the world!
Thursday, September 20, 2012
Just another day in the house of W
Well, it sure has been a busy week. Seems like each week gets busier. We don't have the money to be making so many trips to and from Farmington, yet we keep managing somehow. Today was just another day with 2 round trips. Eric is working right now, so there's one trip, and I had to take Ephraim to the doctor this morning, so there's the other trip.
The doctor said that she believes E is starting night terrors. Oh, joy. Bretton had them soooo bad. I hope E's don't get nearly as bad as Bretton's were. (B would attack me in his sleep, once with a knife, because they were so bad.) She said that because of Ephraim's chromosome deletion and the night terrors, she feels he needs another evaluation by the neurologist. So, I called and they scheduled him for January, but will change it to a sooner date when the neurologist reads the genetics report and *if* the neurologist believes it is necessary to do it sooner. We thought the trips to Portland would just be once a year for his genetics recheck, but I guess not. :\
On a positive note, Lorelai did awesome with Eric this morning. I was gone from about 9-11, so not very long, but a good start. I'm hoping to do a 3 or 4 hour trip soon to see how she does when it is long enough for her to need to nurse but not have me here to do so. She has started using a straw cup, though she doesn't drink much from it and prefers not to do so. But, it is better than nothing.
Bretton is still at his friends house. We get him tomorrow after school for the weekend. He wants to go to the fair so badly, and while we really don't have money to spend, we also don't spend a whole lot of time with Bretton and the fair is once a year, so we may take him with a serious limit on what can be spent. I'm hoping E can stay with Denise so we can focus more on B. Though L will need to go with us. This is the first year that I can go on a ride with B in like 3 years, so I know he wants to go on at least one with me, and probably one with Eric.
Tomorrow E has his evaluation. I should be able to post a quick thing tomorrow night, but if not I will add something Saturday. I can't wait to have it done with and know where we stand, no matter what the outcome is.
The doctor said that she believes E is starting night terrors. Oh, joy. Bretton had them soooo bad. I hope E's don't get nearly as bad as Bretton's were. (B would attack me in his sleep, once with a knife, because they were so bad.) She said that because of Ephraim's chromosome deletion and the night terrors, she feels he needs another evaluation by the neurologist. So, I called and they scheduled him for January, but will change it to a sooner date when the neurologist reads the genetics report and *if* the neurologist believes it is necessary to do it sooner. We thought the trips to Portland would just be once a year for his genetics recheck, but I guess not. :\
On a positive note, Lorelai did awesome with Eric this morning. I was gone from about 9-11, so not very long, but a good start. I'm hoping to do a 3 or 4 hour trip soon to see how she does when it is long enough for her to need to nurse but not have me here to do so. She has started using a straw cup, though she doesn't drink much from it and prefers not to do so. But, it is better than nothing.
Bretton is still at his friends house. We get him tomorrow after school for the weekend. He wants to go to the fair so badly, and while we really don't have money to spend, we also don't spend a whole lot of time with Bretton and the fair is once a year, so we may take him with a serious limit on what can be spent. I'm hoping E can stay with Denise so we can focus more on B. Though L will need to go with us. This is the first year that I can go on a ride with B in like 3 years, so I know he wants to go on at least one with me, and probably one with Eric.
Tomorrow E has his evaluation. I should be able to post a quick thing tomorrow night, but if not I will add something Saturday. I can't wait to have it done with and know where we stand, no matter what the outcome is.
Monday, September 17, 2012
More Blood Work at the Geneticist
More blood work today. But this time, the blood work was to test Eric and I for the same genetic deletion that they found in Ephraim. This will let us know if we have the deletion and passed it on to him, or if the deletion is newly formed within Ephraim. You may be wondering what that deletion is and what it means for Ephraim. Well, the answer can be found if you read on. ;)
So, Ephraim's microarray results showed a clinically significant loss of 15q11.2. (For Ephraim, he has at least four genes missing in this sector of Chromosome 15.) An excerpt from the results are as follows: "...Published reports have suggested that this deletion is associated with an increased risk for a variety of neurocognitive disorders including developmental, motor, and speech delays, neurological and/or behavioral problems, and idiopathic generalized epilepsy, with incomplete penetrance and variable expressivity. ..."
Confused?? Here's a little break down. Incomplete penetrance means that some people may have this deletion and show no signs of the deletion (therefore usually not knowing that they even have the deletion) and develop normally. Variable expressivity means that the other people who have this deletion can show any number of developmental delays, which can vary from very little to severe.
Because Ephraim has a significant amount of delays, within all categories listed above except epilepsy (at this time), it is very likely that this deletion is affecting him developmentally. This deletion however, does *not* mean that he won't have another separate diagnosis. It is actually likely that he does have a neurocognitve disorder (which we will find out about on Friday). If he does have a neurocognitve disorder (which as most people know, we are thinking he has ASD), the deletion may have helped play a part in "why". It is likely that we will never know all of the "why's" though, since genetics is only one of many factors.
Just as a little side note. Some people like to use Google. If you so choose to do so to learn more about Ephraim's deletion, please bear in mind that you will mostly find information on 2 different syndromes, Angelman's Syndrome and Prader-Willi Syndrome, neither of which Ephraim has. To have one of those syndromes, Ephraim would need to be missing a larger portion of the Chromosome. Yes, the part that he is missing is also missing in people with AS and PWS, but his is only a small portion in comparison which leaves him with no known syndrome at this time.
Now that we have that information, we are onto his psychological evaluation on Friday to determine whether he has ASD or something else (or nothing at all, which is unlikely).
So, Ephraim's microarray results showed a clinically significant loss of 15q11.2. (For Ephraim, he has at least four genes missing in this sector of Chromosome 15.) An excerpt from the results are as follows: "...Published reports have suggested that this deletion is associated with an increased risk for a variety of neurocognitive disorders including developmental, motor, and speech delays, neurological and/or behavioral problems, and idiopathic generalized epilepsy, with incomplete penetrance and variable expressivity. ..."
Confused?? Here's a little break down. Incomplete penetrance means that some people may have this deletion and show no signs of the deletion (therefore usually not knowing that they even have the deletion) and develop normally. Variable expressivity means that the other people who have this deletion can show any number of developmental delays, which can vary from very little to severe.
Because Ephraim has a significant amount of delays, within all categories listed above except epilepsy (at this time), it is very likely that this deletion is affecting him developmentally. This deletion however, does *not* mean that he won't have another separate diagnosis. It is actually likely that he does have a neurocognitve disorder (which we will find out about on Friday). If he does have a neurocognitve disorder (which as most people know, we are thinking he has ASD), the deletion may have helped play a part in "why". It is likely that we will never know all of the "why's" though, since genetics is only one of many factors.
Just as a little side note. Some people like to use Google. If you so choose to do so to learn more about Ephraim's deletion, please bear in mind that you will mostly find information on 2 different syndromes, Angelman's Syndrome and Prader-Willi Syndrome, neither of which Ephraim has. To have one of those syndromes, Ephraim would need to be missing a larger portion of the Chromosome. Yes, the part that he is missing is also missing in people with AS and PWS, but his is only a small portion in comparison which leaves him with no known syndrome at this time.
Now that we have that information, we are onto his psychological evaluation on Friday to determine whether he has ASD or something else (or nothing at all, which is unlikely).
Saturday, September 15, 2012
Quick Update
So, just a quick update, as I really don't have time this morning (busy day ahead).
Lorelai is having a real hard time at night. I am assuming it is teething. He two bottom teeth have poked through, and I can see the ridges of the two top teeth. She whines, fusses, and wakes up on a regular basis. We don't normally do medicine if we can help it, but no one is getting much sleep, especially me, so I am thinking we will try some Tylenol before bed tonight and see if that helps at all.
Ephraim had his second observation on Thursday. He goes for his psychological evaluation this coming Friday, and we were told by the observationist that the psychologist will tell us his findings at the evaluation. I am excited, yet nervous. That may sound weird-- to be excited. But, when you have known for a while that something is "off" and you just want to get a diagnosis to start services that are really needed, you get excited to know that you are *so* close to finally having an answer.
Bretton is still spending his school nights with his best friend and family. They really love having him and while I miss him (we have him on weekends), we are so thankful to have people who treat him like their own son. The thought was that it would just be for a few months, as we were were under the impression that we would be getting a house, but that is looking more and more like it won't be happening. So, Bretton may be staying with this other family for the rest of the school year. Or until we can find something in Farmington in our price range with 3 bedrooms-- which is proving to be impossible right now. :\
Eric has been applying to a million places, yet has heard nothing. He is starting to feel like no one wants to hire him and that there must be something about him that is preventing him from getting a job. I've tried to tell him that isn't the case-- they don't even know him. I am praying he finds something soon.
I'm just chugging along. Trying hard to not be worried about our finances and to not be stressed. Enjoying my time home with the children, despite how hard they can be sometimes. I'm planning on subbing on the days that Eric doesn't work, as long as Lorelai can handle it. We will see.
Well, that's about all for now.
Lorelai is having a real hard time at night. I am assuming it is teething. He two bottom teeth have poked through, and I can see the ridges of the two top teeth. She whines, fusses, and wakes up on a regular basis. We don't normally do medicine if we can help it, but no one is getting much sleep, especially me, so I am thinking we will try some Tylenol before bed tonight and see if that helps at all.
Ephraim had his second observation on Thursday. He goes for his psychological evaluation this coming Friday, and we were told by the observationist that the psychologist will tell us his findings at the evaluation. I am excited, yet nervous. That may sound weird-- to be excited. But, when you have known for a while that something is "off" and you just want to get a diagnosis to start services that are really needed, you get excited to know that you are *so* close to finally having an answer.
Bretton is still spending his school nights with his best friend and family. They really love having him and while I miss him (we have him on weekends), we are so thankful to have people who treat him like their own son. The thought was that it would just be for a few months, as we were were under the impression that we would be getting a house, but that is looking more and more like it won't be happening. So, Bretton may be staying with this other family for the rest of the school year. Or until we can find something in Farmington in our price range with 3 bedrooms-- which is proving to be impossible right now. :\
Eric has been applying to a million places, yet has heard nothing. He is starting to feel like no one wants to hire him and that there must be something about him that is preventing him from getting a job. I've tried to tell him that isn't the case-- they don't even know him. I am praying he finds something soon.
I'm just chugging along. Trying hard to not be worried about our finances and to not be stressed. Enjoying my time home with the children, despite how hard they can be sometimes. I'm planning on subbing on the days that Eric doesn't work, as long as Lorelai can handle it. We will see.
Well, that's about all for now.
Tuesday, September 11, 2012
Genetics
Well, today we got a call from the geneticist. Well, the counselor for the geneticist. She informed us that Ephraim's lab work came back and that there *is* a genetic "issue". At this time, because we know very little about what it is, what it means, etc, we aren't sharing too much info. We go back to the geneticist on Monday to discuss the details. Eric and I have already begun doing some research on what we know so far, and are going to try to come up with a list of questions and concerns to ask while we are there.
Over the last 2 years, I have known there was something "special" about Ephraim. Really, over the past nearly 3 years. I don't know if I have mentioned it before or not on here, but I have known from day one of my pregnancy with him that the child was going to have a very different and very special life. I don't know how or why. Call it mother's intuition, call it nothing, either way, I knew. In my heart I knew that I would be taking him to appointments galore, helping him with basic skills that most people take for granted, etc.
Over the last year or so, it has become a little more evident to others around us. It has been slower for some than others, but finally people were realizing that maybe there was something different about E. Still, very few people believed me as I insisted there was something that would one day be diagnosed. My thought was a possible ASD (Autism Spectrum Disorder). I have said right along that he is on the spectrum, and that if he isn't, there is something similar to ASD that he has.
At E's 18 month WCC, we voiced our concerns to the doctor. She hadn't been his doctor for very long though so she really didn't know E well enough to see the same things we had been seeing all along. Though, at his 2 year WCC, she said she agreed with us and wanted him evaluated. When she found out he was already being evaluated, she was glad that we took the initiative to get the ball moving. (I tell you what: I am, and always will be, that mother that supports her child through everything and advocates for him (or her) to the fullest.) Our doctor is great though, and did refer us to the geneticist at his 18 month appointment, despite not being concerned at the time.
When we finally went to his appointment last month, the geneticist said everything appeared normal from the outside, but ran blood work to check for any underlying genetic issues within his chromosomes, etc. We had high hopes, and figured it would probably come back fine, which would just keep us on the path of evaluations for other things (such as ASD, etc.) with no real answer key. But, we were wrong.
You might think at this point that I would be scared. I'm sure most people would be, but you know, it may seem weird, but I'm not scared at all. I'm a little relieved, and a little saddened, but not scared. I am relieved to know that it isn't "all in our heads" as some people keep saying. I am relieved to finally start getting some answers so that I can understand my child better, and so that I can help others to understand my child better. I am saddened to know that there is something genetically causing his delays and behaviors that no one can ever completely change because his genetic make up is what it is. I am saddened to think about what this could possibly mean for his future. But, I am not scared. I shall have no fear of what is or will be-- I am trying my best to remember that there is no fear to be had in anything but the Lord Himself.
Oh, how I am so thankful. I can't even begin to say all the things I am thankful for. But for now, let me leave it at this. I am thankful for a doctor, who though at the time wasn't super concerned, sent us to the geneticist because she knew how concerned we were. I am thankful that he is a happy go lucky kid most of the time, and I am thankful that God never gives me more than I can handle, even when I think otherwise.
Despite the sadness that overtakes me at times when I think of things that E can't do, and may never do, I am also filled with joy by all that he can do, and all that I know I can still try to teach him. I am filled with pride to be the mother of an amazing, charismatic, charming, quirky, loving child, who I love and adore more than I could ever express. No matter what, he is and always will be my baby boy who is PERFECT in every way.
Over the last 2 years, I have known there was something "special" about Ephraim. Really, over the past nearly 3 years. I don't know if I have mentioned it before or not on here, but I have known from day one of my pregnancy with him that the child was going to have a very different and very special life. I don't know how or why. Call it mother's intuition, call it nothing, either way, I knew. In my heart I knew that I would be taking him to appointments galore, helping him with basic skills that most people take for granted, etc.
Over the last year or so, it has become a little more evident to others around us. It has been slower for some than others, but finally people were realizing that maybe there was something different about E. Still, very few people believed me as I insisted there was something that would one day be diagnosed. My thought was a possible ASD (Autism Spectrum Disorder). I have said right along that he is on the spectrum, and that if he isn't, there is something similar to ASD that he has.
At E's 18 month WCC, we voiced our concerns to the doctor. She hadn't been his doctor for very long though so she really didn't know E well enough to see the same things we had been seeing all along. Though, at his 2 year WCC, she said she agreed with us and wanted him evaluated. When she found out he was already being evaluated, she was glad that we took the initiative to get the ball moving. (I tell you what: I am, and always will be, that mother that supports her child through everything and advocates for him (or her) to the fullest.) Our doctor is great though, and did refer us to the geneticist at his 18 month appointment, despite not being concerned at the time.
When we finally went to his appointment last month, the geneticist said everything appeared normal from the outside, but ran blood work to check for any underlying genetic issues within his chromosomes, etc. We had high hopes, and figured it would probably come back fine, which would just keep us on the path of evaluations for other things (such as ASD, etc.) with no real answer key. But, we were wrong.
You might think at this point that I would be scared. I'm sure most people would be, but you know, it may seem weird, but I'm not scared at all. I'm a little relieved, and a little saddened, but not scared. I am relieved to know that it isn't "all in our heads" as some people keep saying. I am relieved to finally start getting some answers so that I can understand my child better, and so that I can help others to understand my child better. I am saddened to know that there is something genetically causing his delays and behaviors that no one can ever completely change because his genetic make up is what it is. I am saddened to think about what this could possibly mean for his future. But, I am not scared. I shall have no fear of what is or will be-- I am trying my best to remember that there is no fear to be had in anything but the Lord Himself.
Oh, how I am so thankful. I can't even begin to say all the things I am thankful for. But for now, let me leave it at this. I am thankful for a doctor, who though at the time wasn't super concerned, sent us to the geneticist because she knew how concerned we were. I am thankful that he is a happy go lucky kid most of the time, and I am thankful that God never gives me more than I can handle, even when I think otherwise.
Despite the sadness that overtakes me at times when I think of things that E can't do, and may never do, I am also filled with joy by all that he can do, and all that I know I can still try to teach him. I am filled with pride to be the mother of an amazing, charismatic, charming, quirky, loving child, who I love and adore more than I could ever express. No matter what, he is and always will be my baby boy who is PERFECT in every way.
Saturday, September 1, 2012
Lots of ideas!
So, this morning I set up a FB page for my new diaper cake venture. I a crossing my fingers *and* toes in hopes that this will take off well and can help us make a little bit of money.
I also made a stork bundle this morning. I love it! Cute and simple. :) I have so many more ideas now, too, but don't want to do too much just yet. The next item on my agenda is to make a more detailed diaper cake to post a picture of. I am thinking of having it still be pretty basic, but add a few items like baby shampoo, powder, a bib or two, some wash clothes, etc. We'll see how that goes! Some of the other things I am considering in the future are: diaper wagons, mini diapers cakes that are more personalized, mini diaper bassinets, and more!
Anyway, for now I have to go. I am working on cleaning the bathroom. Purging stuff that we have had for years and never used, and trying to organize things. I hate it, but it has to be done, and I would like to have a lot of this cleaning, organizing, and purging done *before* we move! If we move soon that is. We will know a lot more next weekend after my in-laws come and look at our top house choices. I am scared, nervous, and excited all at the same time!
I also made a stork bundle this morning. I love it! Cute and simple. :) I have so many more ideas now, too, but don't want to do too much just yet. The next item on my agenda is to make a more detailed diaper cake to post a picture of. I am thinking of having it still be pretty basic, but add a few items like baby shampoo, powder, a bib or two, some wash clothes, etc. We'll see how that goes! Some of the other things I am considering in the future are: diaper wagons, mini diapers cakes that are more personalized, mini diaper bassinets, and more!
Anyway, for now I have to go. I am working on cleaning the bathroom. Purging stuff that we have had for years and never used, and trying to organize things. I hate it, but it has to be done, and I would like to have a lot of this cleaning, organizing, and purging done *before* we move! If we move soon that is. We will know a lot more next weekend after my in-laws come and look at our top house choices. I am scared, nervous, and excited all at the same time!
Friday, August 31, 2012
Pictures of Diaper Cake and Diaper Baby
So, there are the pictures I have so far. I am not a photographer by any means, so I feel like they don't really do justice for the baby or cake. Oh well. Oh, and I am going to make a stork bundle tomorrow too.
Here is my little blurb. Let me know what you think!
Going to a baby shower? Need a gift to take to the hospital when you visit a newborn? How about a gift mailed to someone too far for you to see, who is having a baby? What cuter, more practical gift can you give than a diaper cake, or diaper baby??
The basic (undecorated) diaper cake contains 2 tiers with a total of 42 Pampers size 1 diapers wrapped in white ribbon. You add any other touches you want when you receive it. $22 (before shipping, if needed). Or, you can order a more intricate cake with other items and/or specific colors (prices will vary, and an example picture will be posted in a few weeks).
Diaper babies consist of 21 Pampers size 1 diapers, a newborn sleeper, a newborn hat, and a pacifier. You choose basic color of the outfit (yellow, green, pink, or blue), but the actual outfit will vary. $32 (before shipping, if needed).
**All pictures are samples. Actual diaper cake or diaper baby may vary from the sample.**
WHOA, and A New Name
I just realized I need a new picture on my blog! We haven't had family photos since that one, which was when E (who is now 25 months old) was 3 months! I need get with it!
I also changed my blog name and domain name. Get it?? :)
I also changed my blog name and domain name. Get it?? :)
Diaper Cakes and Diaper Babies
We need money. Who doesn't? But really, our bills are officially more than our income, which hasn't ever been the case before. So, I have racked my brain trying to think of something I can do to maybe bring some money in, without leaving the children, since my resignation from my job was to be at home with them. I considered taking in a child or two to care for during the day, but my children take more time and energy than 10 and adding another one would take all my sanity away-- though I'm not sure I even have any left. I considered making desserts to sell, like pies, breads, cupcakes, whoopie pies, etc. But, that is a lot of time in the kitchen that I don't really have right now, and a home food processing license that I don't have time or money to invest in just yet (though I am still considering this for the future). I'm not very crafty and have no good ideas on what I could make to sell. So, my options started dwindling and I was about to give up. Then, I decided that maybe I should try diaper cakes and diaper babies. I made a diaper bike and a diaper baby for Bri and Chris and thought the baby came out great. The diaper bike needs work, so I decided to skip out on that for now. Cakes are easy enough, though they take some time. Diaper babies are cute and pretty easy. So, I decided to make some samples, come up with a little sales pitch, and see if I can possibly sell them. Here's hoping!!
So, today I made a sample diaper baby. I need to finish the head and take a picture. I made a sample diaper cake a week or so ago and just haven't gotten to the baby yet. I then went over the pricing of them in my head a million times. I keep thinking I am going to be charging too much. But really, I'm charging near nothing compared to many sites I have seen online. I am going to post pictures and my little sales pitch on some FB groups that I am a part of, tonight, hopefully, and see if anyone is interested. I really hope I can sell at least 3 a month. That is a profit of about $40. Not a lot at all, but could definitely help with gas! When I get a chance to upload the pictures to the computer, I will do another post showing them and the "sales pitch".
So, today I made a sample diaper baby. I need to finish the head and take a picture. I made a sample diaper cake a week or so ago and just haven't gotten to the baby yet. I then went over the pricing of them in my head a million times. I keep thinking I am going to be charging too much. But really, I'm charging near nothing compared to many sites I have seen online. I am going to post pictures and my little sales pitch on some FB groups that I am a part of, tonight, hopefully, and see if anyone is interested. I really hope I can sell at least 3 a month. That is a profit of about $40. Not a lot at all, but could definitely help with gas! When I get a chance to upload the pictures to the computer, I will do another post showing them and the "sales pitch".
Thursday, August 30, 2012
Another week
There are so many things going on right now that I could write about.
So, School started back up, and because we live about 40 minutes north or Farmington where Bretton attends school, his best friend's family has decided to let Bretton live with them Monday through Friday until we have moved. Hopefully, that will be sooner than later. It is weird not having him home, but I know he is in a safe, loving environment and we will have him home every weekend.
Eric has applied to a number of different places, but still hasn't heard anything from anyone, other than LEAP, which hasn't called since his interview, so I think that is a "no go". :\ Not sure what we are going to do if he doesn't get another job soon. We have officially run through our savings and our bills are more than his pay each month. I am trying hard to rely on God to see us through, but it is so hard. I keep wondering if I made the right decision with resigning from my job. I made about 2/3 of the money so I know financially it was a huge decision that could have negative effects. But, I also wanted to be home with my children and feel like they will both benefit from me being home with them. I was thinking I would sub on Eric's days off, but it doesn't look like he will have many off, and his hours make it hard to sub. Saddest part of that: he still only gets like 20 hours a week, yet works most days.
After a very long and full day, this is all I got written down! Next time I am going to attempt to write about the houses we are considering buying. :)
So, School started back up, and because we live about 40 minutes north or Farmington where Bretton attends school, his best friend's family has decided to let Bretton live with them Monday through Friday until we have moved. Hopefully, that will be sooner than later. It is weird not having him home, but I know he is in a safe, loving environment and we will have him home every weekend.
Eric has applied to a number of different places, but still hasn't heard anything from anyone, other than LEAP, which hasn't called since his interview, so I think that is a "no go". :\ Not sure what we are going to do if he doesn't get another job soon. We have officially run through our savings and our bills are more than his pay each month. I am trying hard to rely on God to see us through, but it is so hard. I keep wondering if I made the right decision with resigning from my job. I made about 2/3 of the money so I know financially it was a huge decision that could have negative effects. But, I also wanted to be home with my children and feel like they will both benefit from me being home with them. I was thinking I would sub on Eric's days off, but it doesn't look like he will have many off, and his hours make it hard to sub. Saddest part of that: he still only gets like 20 hours a week, yet works most days.
After a very long and full day, this is all I got written down! Next time I am going to attempt to write about the houses we are considering buying. :)
Friday, August 24, 2012
Break Wanted
I have days of great motivation, and days of not so great motivation. I'm sure most people are like this. But for the past few days, I feel like it is completely gone. I have to actually force myself to do *anything*. I just need and want to sit and do nothing. I want to enjoy the peace and quiet of the mornings before the kids are up, the evenings when they have gone to bed, and maybe even a full day of no children at all. I love my children more than life, but I am really feeling like I need a 24 hour break. Actually, I need 2 of them.
The first 24 hours without children would be to clean, organize, sleep, and maybe even do some crafting or preparing for some crafts. The second 24 hours without children would be spent doing whatever I wanted in the moment. I'm guessing a lot of sleeping, movies, sitting outside, reading, etc.
I love being a mother, but there are times where I am so exhausted from all the mothering duties that I would give my left arm for a few hours alone. Even now, sitting here typing this, you would think that I am probably alone, able to get away for a few minutes to complete a blog entry. Oh, but you would be wrong. You see, most blog entries that I do are short because of what happens for me to write a longer one. I type a sentence or two, then run off to tell (sign to) Ephraim "no" and redirect him, or feed or change one of the little ones, or listen to Bretton tell me stories about his time away this summer or how to play an Xbox game that I really have no interest in, but make myself listen because he cares and I care about him and what he has to say, even if it doesn't appeal to me. Or clean. Or something. I usually take most of the day to type a blog, unless it is after the kids are in bed.
Today, was a different day. Usually I have Lorelai and Ephraim on a schedule of sorts. It isn't strict, but it is good enough to get naps, meals, snacks, playtime, etc in for both of them, and usually at least a sink of dishes done as well. But today, well, today, Ephraim needed extreme stimulation. I always allow him to stim as needed, though I try to also encourage him to find an activity to do after awhile. Today, he was having nothing to do with any activity set before him. All he wanted to do was eat, watch Veggies and Blue's Clues, and stimming. He stomped and ran back and forth as fast and hard as he could. He bounced himself on his bed for over an hour. Bouncing turned into body slamming. He ran in circles around the activity center in the living room, and he hand flapped and toe walked more than usual. He just now, at 7 pm, finally settled down. I just now, finished this blog (after starting it at around 1pm). Ha!
Off I go to eat some dinner and see if Lorelai is awake...
The first 24 hours without children would be to clean, organize, sleep, and maybe even do some crafting or preparing for some crafts. The second 24 hours without children would be spent doing whatever I wanted in the moment. I'm guessing a lot of sleeping, movies, sitting outside, reading, etc.
I love being a mother, but there are times where I am so exhausted from all the mothering duties that I would give my left arm for a few hours alone. Even now, sitting here typing this, you would think that I am probably alone, able to get away for a few minutes to complete a blog entry. Oh, but you would be wrong. You see, most blog entries that I do are short because of what happens for me to write a longer one. I type a sentence or two, then run off to tell (sign to) Ephraim "no" and redirect him, or feed or change one of the little ones, or listen to Bretton tell me stories about his time away this summer or how to play an Xbox game that I really have no interest in, but make myself listen because he cares and I care about him and what he has to say, even if it doesn't appeal to me. Or clean. Or something. I usually take most of the day to type a blog, unless it is after the kids are in bed.
Today, was a different day. Usually I have Lorelai and Ephraim on a schedule of sorts. It isn't strict, but it is good enough to get naps, meals, snacks, playtime, etc in for both of them, and usually at least a sink of dishes done as well. But today, well, today, Ephraim needed extreme stimulation. I always allow him to stim as needed, though I try to also encourage him to find an activity to do after awhile. Today, he was having nothing to do with any activity set before him. All he wanted to do was eat, watch Veggies and Blue's Clues, and stimming. He stomped and ran back and forth as fast and hard as he could. He bounced himself on his bed for over an hour. Bouncing turned into body slamming. He ran in circles around the activity center in the living room, and he hand flapped and toe walked more than usual. He just now, at 7 pm, finally settled down. I just now, finished this blog (after starting it at around 1pm). Ha!
Off I go to eat some dinner and see if Lorelai is awake...
Monday, August 20, 2012
Shift Sleeping and Selfishness
Here I am, 10:35 pm awake and trying to find as much as I can to keep myself occupied and alert until it is my turn to sleep. I am usually already in bed by now, and with barely sleeping at all last night, I am so ready! I don't sleep well in hotels.
Why am I waiting for my turn to sleep? Well, as you all should be aware by now, Ephraim had to have a 24 hour EEG. He is currently sleeping in bed, hooked up to all his electrodes and a little Spiderman back pack. Eric and I debated the many ways we could go about bedtime, and decided that taking shifts to keep watch over E was best. This would ensure that someone was awake and aware of any movement on E's part, so that the back pack can be moved accordingly, ensure he or the back pack doesn't fall off the bed (which would cause serious injury), and to ensure that he isn't just plain getting tangled in the thing. Ephraim is the most crazy sleeper I have ever seen. He is all over the place, often times not even on his bed, no covers, covers, no pillows, under pillows, over pillows, half on the bed, half off the bed, etc.
So, anyway, the day went really well! We were so afraid that Ephraim wouldn't handle the wires, tape, gauze, etc, but he did great! He cried and fought through the 40 minutes of hooking him up, but the tech said he did very well for his age. It broke my heart though, but mostly because he really has no idea as to what was/is going on and can't tell us what exact part was a problem for him. The rest of the day went well, with a few moments of him trying to take the chin strap off (and succeeding), pulling in the "tail", and trying to take the back pack off. All in all, it was a good day, much better than we expected, and I am so proud of him.
He is so cute, happy, and easy going most of the time. I love him so much. I wish I could hear him speak. Not just sounds, but actual words. I am hoping and praying that one day he will "find his voice" and be able to say anything he wants. Oh, how I wish he could talk to us. I cry when I think about how he may never talk. He may never tell us verbally how he feels, what he needs or wants, to say "mommy" or "I love you". It breaks my heart, over and over again. I cry for him, for everyone who is affected in some way by this, whether directly or indirectly, and most of all, I cry for me. I know that is selfish of me, but I can't help but be selfish right now. This is my baby! My precious little boy, whom I love and adore more than life.
And... the internet here at the hotel is being stupid. It says there is plenty of signal but won't connect. So, this post will be posted tomorrow I suppose. What am I going to do for 3 more hours though?!? :/
Why am I waiting for my turn to sleep? Well, as you all should be aware by now, Ephraim had to have a 24 hour EEG. He is currently sleeping in bed, hooked up to all his electrodes and a little Spiderman back pack. Eric and I debated the many ways we could go about bedtime, and decided that taking shifts to keep watch over E was best. This would ensure that someone was awake and aware of any movement on E's part, so that the back pack can be moved accordingly, ensure he or the back pack doesn't fall off the bed (which would cause serious injury), and to ensure that he isn't just plain getting tangled in the thing. Ephraim is the most crazy sleeper I have ever seen. He is all over the place, often times not even on his bed, no covers, covers, no pillows, under pillows, over pillows, half on the bed, half off the bed, etc.
So, anyway, the day went really well! We were so afraid that Ephraim wouldn't handle the wires, tape, gauze, etc, but he did great! He cried and fought through the 40 minutes of hooking him up, but the tech said he did very well for his age. It broke my heart though, but mostly because he really has no idea as to what was/is going on and can't tell us what exact part was a problem for him. The rest of the day went well, with a few moments of him trying to take the chin strap off (and succeeding), pulling in the "tail", and trying to take the back pack off. All in all, it was a good day, much better than we expected, and I am so proud of him.
He is so cute, happy, and easy going most of the time. I love him so much. I wish I could hear him speak. Not just sounds, but actual words. I am hoping and praying that one day he will "find his voice" and be able to say anything he wants. Oh, how I wish he could talk to us. I cry when I think about how he may never talk. He may never tell us verbally how he feels, what he needs or wants, to say "mommy" or "I love you". It breaks my heart, over and over again. I cry for him, for everyone who is affected in some way by this, whether directly or indirectly, and most of all, I cry for me. I know that is selfish of me, but I can't help but be selfish right now. This is my baby! My precious little boy, whom I love and adore more than life.
And... the internet here at the hotel is being stupid. It says there is plenty of signal but won't connect. So, this post will be posted tomorrow I suppose. What am I going to do for 3 more hours though?!? :/
Saturday, August 18, 2012
Anxiety
I'm starting to become a mess. I mean, more of a mess than I usually am. My anxiety levels have been higher than usual lately, due to many stresses, but it is especially high now as we prepare for a two night stay in Portland to take care of Ephraim's doctor's appointments.
Tomorrow, we will plan to leave around 10 am to head to Portland. We will drop Bretton off with friends (his choice) and then head south. We live approximately 2.5 hours north of Portland and with a nursing baby and a "special needs" toddler, the trip can be anywhere from quiet and relaxing, to stressful and overstimulating for all involved. I am hoping it will be an easy trip.
We are staying in a motel for Sunday night and Monday night. With the gas, amount of time on the road and the time of the appointments, it just made the most sense to us. Especially since we have no idea how Ephraim is going to handle everything.
In case you don't know, E has been having moments of blank staring spells for about a year or so now. They have progressively gotten longer and more often, though weren't a huge concern to us, knowing that he is probably Autistic (we are still undergoing evaluations to determine if it is Autism or something else, but in my heart, I already know) and it can be a part of Autism. However, at one of his observations, the observationist noticed and said we should bring it up with the doctor. She seemed concerned, so we brought it up at his 2 year WCC, where the doctor decided we should get testing done. He went a week later for an EEG, hat ended up a disaster, and the next day after that to the neurologist who advised us of the 24 hour EEG and the possibility of seizures, Landau-Kleffner Syndrome, or just a part of Autism (which he also suspects). So, E is being connected to a small backpack that will have electrodes connected to his head-- an EEG. He needs to have it on for 24 hours (technically it will be less) so that they can see how his brain reacts to all sorts of stress, his "normal" day, and sleep. His appointment is Monday morning at 9 am. It will take about an hour to hook him up. After that appointment, he has an appointment with the Geneticist at 10:30 am. This was scheduled over 6 months ago to help us determine whether there is something genetically causing the signs and symptoms that we are seeing in Ephraim.
After these appointments, we are hoping for an easy going day, but have no idea what we are really in for. We fear E will have a hard time with the backpack and the gauze the want to put around his head and chin. My MIL sent a bunch of new toys and Veggie movies to help keep him entertained though. Hopefully they do the trick! We need to keep him entertained enough to leave the wires alone-- which he loves. Seriously, the child loves string, wires, lamp posts, signs, etc. So, keeping him away from the wires could be hard, but we are hoping and praying for the best.
Tuesday morning, he has to go back in at 8 to be disconnected. I am hoping that other than the follow up appointment, that we will be done with the neurologist. As soon as I know more, I'll post. As soon as we are back from the appointments, I'll update on whether we have hair still or not. ;)
Tomorrow, we will plan to leave around 10 am to head to Portland. We will drop Bretton off with friends (his choice) and then head south. We live approximately 2.5 hours north of Portland and with a nursing baby and a "special needs" toddler, the trip can be anywhere from quiet and relaxing, to stressful and overstimulating for all involved. I am hoping it will be an easy trip.
We are staying in a motel for Sunday night and Monday night. With the gas, amount of time on the road and the time of the appointments, it just made the most sense to us. Especially since we have no idea how Ephraim is going to handle everything.
In case you don't know, E has been having moments of blank staring spells for about a year or so now. They have progressively gotten longer and more often, though weren't a huge concern to us, knowing that he is probably Autistic (we are still undergoing evaluations to determine if it is Autism or something else, but in my heart, I already know) and it can be a part of Autism. However, at one of his observations, the observationist noticed and said we should bring it up with the doctor. She seemed concerned, so we brought it up at his 2 year WCC, where the doctor decided we should get testing done. He went a week later for an EEG, hat ended up a disaster, and the next day after that to the neurologist who advised us of the 24 hour EEG and the possibility of seizures, Landau-Kleffner Syndrome, or just a part of Autism (which he also suspects). So, E is being connected to a small backpack that will have electrodes connected to his head-- an EEG. He needs to have it on for 24 hours (technically it will be less) so that they can see how his brain reacts to all sorts of stress, his "normal" day, and sleep. His appointment is Monday morning at 9 am. It will take about an hour to hook him up. After that appointment, he has an appointment with the Geneticist at 10:30 am. This was scheduled over 6 months ago to help us determine whether there is something genetically causing the signs and symptoms that we are seeing in Ephraim.
After these appointments, we are hoping for an easy going day, but have no idea what we are really in for. We fear E will have a hard time with the backpack and the gauze the want to put around his head and chin. My MIL sent a bunch of new toys and Veggie movies to help keep him entertained though. Hopefully they do the trick! We need to keep him entertained enough to leave the wires alone-- which he loves. Seriously, the child loves string, wires, lamp posts, signs, etc. So, keeping him away from the wires could be hard, but we are hoping and praying for the best.
Tuesday morning, he has to go back in at 8 to be disconnected. I am hoping that other than the follow up appointment, that we will be done with the neurologist. As soon as I know more, I'll post. As soon as we are back from the appointments, I'll update on whether we have hair still or not. ;)
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