Monday, November 23, 2009

Changes

Well I am not sure where to begin. It looks like I will need to drastically cut my computer time coming up. We are in the midst of what I will call a family crisis. And due to that we would really covet your prayers. I have a list of generic requests. I am sure you can understand my need to be discreet at this time.

Pray for:
Wisdom. There will be lots of decisions to be made and a heavy dose of wisdom would be welcomed!

Patience. I really want to know, NOW, how this is all going to turn out, but these things don't work themselves out overnight.

That God would wield His Magic Eraser. Enough said on that one, but needed VERY much.

Healing.

Protection from the fiery darts of the enemy.

I am sure there are a ton more, but right now those would suffice.

The Lord has been calling to me for some time to come and walk with Him. I have been putting that on hold for a while now, but am now in a position that I NEED to be walking with Him. I had a bit of an analogy to share with you all about having a deep relationship with the Lord. Please remember that analogies usually break down somewhere and I am sure mine has many holes in it. But I think it will get the point across. You see you can know *about* God but still live a defeated life. You can know a lot of scriptures and still be living the status quot. You can not live an abundant life unless you *KNOW* God. I am sure what I just said doesn't seem to be any different than the previous sentences, but there is a world of difference. And I know, because I have lived it. So here is my analogy.

Let's say that you are poor. You wear rags, eat beans and rice each and every day and have to walk everywhere because you don't have a vehicle. Now let's say that you have a very rich aunt. You know a lot *about* her. You know where she lives, what she likes, what she doesn't like and stuff like that. But other than that her life doesn't have any impact on yours. You can tell all your friends about this aunt, but that information has no impact on your life. But let's say that one day you get a letter in the mail from your rich aunt. She tells you that she would love correspond with you and that when she returns your letters she will include a check to meet your needs. Now at this point knowing that information STILL will NOT change your life. You can tell everyone that this aunt can meet your needs but still be living in poverty. It is only when you actually write back to her, that she then sends you a letter in response to yours that you start to know her more intimately. Plus you also receive a nice check that you are then able to buy some newer clothing with. Then you can start eating a more varied diet. And as you continue to correspond with her your needs are continually met. One week you tell her how hard things have been with all the rain and having to walk in it each day. And low and behold she sends you a vehicle. Now you can tell your friends all about your aunt, and not just the casual facts, but about how much she loves you, cares for you and all sorts of wonderful things. And your life is PROOF of it.

Now I chose to use money as an example only because of how tangible it is. But this would apply to any need. Are you living a life filled with anger and bitterness? Are you living in depression? The list can go on and on. The idea is that the Bible tells us not only about God, but about how He wants to "correspond" with us. When you find scriptures that say, you are a new creation, you can be sure that He meant it. When it says that all you have to do is ask for ( fill in the blank---biblically that is, say the fruit of the Spirit, or something else that scripture says you can have) then all you really have to do is ask and then wait EXPECTANTLY for it. I mean what good would it do for you to have written your aunt, then not check your mail box each day for her return letter? So I hope I was able to convey the difference in knowing *about* God and *knowing* God.

And I am being called to *know* God. A wonderful friend of mine was able to share an experience she recently had. And it has to do with finding the time to spend with the Lord. If you find yourself saying that you just don't have the time, chances are that there is something in your life that you are making more of a priority (idol even) than the Lord. I thought about that one, and it didn't take me long to figure out where I could find the time......my computer time! Ouch! I plan on having a movie night on Friday's for the girls, and I think I may just make Friday night my computer night. The rest of the week the computer will remain off. Well, for the most part, I do let Jed watch Signing Time during his feedings. But I want to be committed, and so in between the ST viewing it will be off. This is going to be hard...for me ! So if I don't answer your emails or post your comments for a long time, please know I am not ignoring you. I just won't be here very much. I will update my blog each week though. It is my online journal, and I don't want to stop journaling about our life.

I want to leave you with some VERY, VERY cute crochet patterns. I am making the stars currently to decorate our doorways/windows with. I plan on making a flock of birds to go up on our Christmas tree as well. And golly gee, how can one resist a blanket of colorful hexagons? I get all giddy when I go to this persons blog! Enjoy!

Stars tutorial, and more pictures of Stars

Birds

Blanket

Friday, November 13, 2009

The Pow-Wow Meeting

So today was our pow wow with Jed's new SLP and coordinator. It went very well. I think we were there for two hours. I was a bit concerned about this meeting only because of previous comments made by some people that had me worried that this may not be the program for Jed. But I was pleasantly surprised by the team work mentality. Jed will have speech therapy twice a week. He will get the short end of the stick when it comes to half days (the program runs on the traditional school calendar) as they have one each month, pretty much on his day for therapy. Oh, well, that still puts him ahead overall.

We discussed Jed's OCD issues with the SLP. I really liked her take on it, although I feel that it maybe only partially true for Jed. She thought that perhaps because Jed can not communicate, which is a big issue, his need to lay things out and show us could just be his way to take control of something in his life. He is really good at sorting things and it may just be his way of saying, "hey, I may not be able to talk with you all, but look what I CAN do!" Again, I thought that she may be onto something, but at the same time I still feel this goes deeper than that. But it was great to have another take on it!

I have been trying to do research on my own about apraxia as there isn't anyone else to talk to about it. So I asked the SLP if she would be able to tell (a few months down the road and has had time to work with Jed) how long she thinks we might be looking at having speech therapy. At first the coordinator had told us of a boy who was very much like Jed, starting from the very bottom rung at the same age. By five as he was entering kindergarten no one could tell he ever had a speech problem. I told them, that that is what is so hard about this as you hear the stories of kids who had one or two years of speech therapy and they are good to go. Then you hear of the stories about children in speech therapy for 5+ years! So then they told me that they personally believe that the children who recover so quickly really didn't have apraxia. The very nature of apraxia isn't something they feel, from their experience/teaching, is resolved that quickly. They feel that anyone with true apraxia will need intense therapy for YEARS. Oh, well that wasn't exactly what I was hoping to hear :-) And then the SLP said that from what she has seen of Jed and his abilities that she feels he truly has apraxia. We were able to see the results of the educational test she did last week. She said that although he tested mildly delayed (he was all of one point into the mild delay range) she felt that he actually was worse off than that as he had more than half of his points come from the fact that he knows a lot of his ABC's. Again, that wasn't what I had expected to hear, although we've always known that Jed has always seemed to be "off".

But perhaps the most disturbing idea brought up was one of him not talking....ever. I some how don't believe that will happen. Again, though, I was taken off guard when she brought that up. At first I wasn't sure if she wasn't using that possibility to just make a point. The first time she brought it up was when we were discussing his IEP (Individual Educational Plan). She layed out the areas she was going to work on. And we were talking about the need to change the IEP if we thought something wasn't working. So she said that she put this down to start with and that if we came to a time six months, a year (no real date given) and he made no progress she said that you can't beat a dead horse (not her exact words, but the same idea), if he can't do it, then he can't do it and other actions would be necessary. What those were I wasn't sure. She mentioned that our goal is for him to be able to communicate and that there are other ways to communicate other than verbally. WOW, did I hear her right? Like I said, at first I thought she may just be making a point, but she repeated herself at the end of our meeting. I have to say that through this all I have had a peace that everything is going to be OK. However, even though I know that peace comes from the Lord, I also know He hasn't specifically given me what that "OK" will look like. I have a peace that everything will be OK, not a peace that Jed is going to talk. Does that make sense? So when she made those comments I kind of started saying, Ok, Lord what does all this mean, why did she even have to bring that up?

So Jed starts therapy this Monday....woo hoo! I am excited to see what happens over the next few months. And I would be lying if I didn't say I am also a little nervous. Not overly worried or freaked out or anything like that, but a bit nervous. I really hadn't thrown in the prospect of Jed not being able to communicate verbally before. I kind of like having a plan and knowing what to expect. We have a plan, but we don't know what to expect. Time will tell. Now here's the thing. It drives my hubby crazy that I can wait very patiently to open Christmas gifts on time and not before Christmas. I also can wait patiently when I am pregnant to find out the gender of our child at it's birth and not before hand. But I am not feeling very patient with this at all. I kind of feel like we've been living in the unknown with Jed for a couple of years now. Granted we have been blessed to finally know what 'ails' him. But the very nature of his 'ails'...being neurological... make it unpredictable as to how soon or what course he will take. And I want to know now what to expect for him, for his future. But alas the Lord's grace is sufficient for the day, each and every day. I need to enjoy Jed, to work hard with him on the road to verbal communication, and let the results be what they will be.

It is late here and I need to get to bed. I am a bit worn out from the emotional stress of the day. Not to mention a needy baby thrown into the mix. He kept wanting to nurse all day...not a good sign. Could just be teething.......I am hoping it is only teething! Not to mention that it is very evident that we NEED to go back to eating mostly veggie like we were some 10 months ago. (Think lots of children complaining of tummy aches day in day out, multiple times a day...it makes one weary. And it is due to our diet, milk in particular.) We fell off that wagon long ago and we are truly reaping the consequences in many, many ways. But that will need to be addressed in another post for another day. My pillow is calling my name :-)

Wednesday, November 11, 2009

A new take on OCD

Jed seems to have OCD. I am not an expert on it at all, so I really don't know if he really has it. My sister and I think that eveyone has it to one extent or another :-) Anyways, Jed's seems to morph into new areas. We will seemingly get over one area when another pops up. And some are easier to deal with than others. This one has been a bit more challenging. At first we thought he was just wanting more attention. He has been doing well lately and maybe he isn't getting as much attention from us than usual. However the other day it was pretty clear that it was more than that. It starts with Jed wanting to look at a book with me. The book in particular is a childrens 'dictionary'. Each page has a group of similar objects (clothing, toys, transportation, etc.) on it. He then says 'bah' while signing 'mom'. He waits for me to respond with a 'yes?' or 'what?'. Then he looks at me to make sure I am looking right at the book, and then points to one of the pictures for me to name. This happens with EACH. AND. EVERY. PICTURE. So after 20 pages of that, I decided to change things up a bit. I decided to point to the pictures myself and name them as that would cut out the bah?, what?, look/point. Um, yeah, that didn't work! That sent Jed into a tizzy.

Jonah - "I Did it My Way"

When I go out to take pictures of the kids I try to take a bunch, in hopes of getting one or two good ones. In the video I decided to put a bunch of those pictures together. In the first segment you will see Jonah having fun with the door, until he can't open it! We thought the course of each song was fitting to the pictures. Enjoy!

video

Sunday, November 08, 2009

what a day

Saturdays are busy days here. This one happened to be the girls’ last soccer game for the season (they start back up in the spring). I wanted to get out to Saoirse's game, but hers is at 9 AM. I had to find winter clothing for the boys as we had been very blessed with warm weather all fall, until yesterday, so I had to come later, and I missed her last game....bad mommy :-) It warmed up remarkably fast and we were shedding clothing by the hour. I was totally surprised that we were still being bombarded by yellow jackets! OK, not bombarded, but if you had food, you had better been willing to share! I stayed until the last ten minutes of Isa and Moira's game. It is evident that we need to really work out this winter. I just started this week, getting up a tiny bit earlier to work out. We plan on getting a small exercise trampoline for all of us to use. I first read about its ability to help the brain.....make pathways maybe...I can't remember exactly. But I was reading about Jed's apraxia and the article talked about making progress due to the trampoline. So as I was looking for a trampoline I found out about its exercise potential. I was a bit skeptical at first. I decided to bring it up to our chiropractor to see what she knew about it. She told me that trampolines are WONDERFUL for our bodies (unless of course you fall off of one and break something!). We went to a new Walmart yesterday and decided to see if they had any. The did, but it didn’t have a stabilizing bar. While there I decided to look at the aerobic videos. I found one by Leslie Sansone (I love her walking videos) that had five workouts on it. The longest one is only 30 minutes and a couple of them are only 20. I thought that it would be perfect for me since I don’t seem to have time to work out, and perfect for Isa and Moira since they don’t have the stamina nor the patience for something longer. As we were browsing, we saw a step bench (for step aerobics), and that reminded me that I have one of those! Ha, ha! I am thinking it will make an appearance soon. I am hoping with a wide selection to chose from we will have us moving all winter long.

We have been ‘borrowing’ our friend’s male goat. We decided to breed our two goats this winter. That way we will have our own supply of fresh milk come spring. Ohhhh, I can hardly wait! Coming home from soccer yesterday I was greeted with this male goat tied up to one of our backyard tress….that’s not where we left him! Apparently he jumped our fence and decided to ‘hang out’ with our neighbors goats….who are all female. And let me tell you….that taste you may get from store bought goats milk….it comes from the males! Seriously, that smell, is the smell of a male. We had read that if you don’t want that smell/taste, then you need to keep any males away from your females. I thought that was silly. That was because I was ignorant! I only just patted two small pat-pats on the top of this male goats head. After washing my hands in hot water and plenty of soap, multiple times, they still smelled like male goat! YUCK! That smell just sticks to you! So now I can totally see why it can affect the milk supply. Hopefully we will have little goat babies come spring :-)

I thought I would leave you all with the links to the two ACC devices we have been looking into. This one is called XPress, by Dynavox. The other is Proloquo2Go, used on the IPod Touch or IPhone. I need to get going. We need to get boys ready for church. Have a blessed Sunday!

Friday, November 06, 2009

A this and that post

I have a few really cute pictures to share....but they are on the front computer! Right now the girls are watching a movie on that computer (pizza and movie night!) so I can't get to them right now. I'll try to edit this post later to put them up.

Jed's speech therapist called to cancel the afternoon appointment. We will make it up next week. I was able to talk to her about my concerns of getting Jed an ACC devise that will meet his needs. I was pleased to hear that she does not agree with the new (to be) speech therapist's view. She said because of the severity of Jed's apraxia she foresees him being in speech therapy for the next five (or more!) years. She felt that it was very important that he have a way to communicate effectively in the meantime. It has been really neat to see the next 'level' Jed has taken with his signs and communication. He has known the signs for help, want, my turn and things of that nature, but has never used them on his own. Well just yesterday and again today he has used those...totally on his own, with no prompting. As a matter of fact we were wondering what he was signing as he has never signed those things unless we have prompted him. So imagine our surprise this evening when Jeremiah put a movie on and Jed was trying to tell us something, with 'words' and with sign. He made it clear he was unhappy about something. We figured out that he was signing, "don't like" for the movie!!! He didn't want to watch the movie Jeremiah had on the computer! This is amazing!!!!!! Jed has only used signs to label things. He seems like a new child to me as he is just now communicating not liking something, or trying to tell me this afternoon that it was "his turn" on the computer. He likes to get on Word and type in letters. So he signed, 'my turn' and signed some letters! Can you tell I am excited?!

I have other exciting news....well for me anyways. My sister has a new calling plan!! That means I don't have to wait till after nine p.m. or the weekends anymore!!! I remember one rough day, Jeremiah had come home to me being a puddle. After talking for a while he said, I think you need to call your sister. And I had to tell him I couldn't...she didn't have any minutes left (boo hoo). So when the phone rang this afternoon and her number came up I thought that perhaps something was wrong. Thankfully not so! She was just calling to tell me I can now call her any time :-) I truly pray that my girls will have such wonderful relationships with each other like my sister and I share.

I got our new spelling program, All About Spelling, in the other day. I haven't used it yet as I am 'setting it up'. They recommend that each student, or every two students have their own letter tiles. I didn't want to fork over the money for that, so I have been spending time making my own. I am really excited about this program as it will serve as our spelling and phonics program. I will continue to use Phonics Pathways as our learning to read program, but I think that the spelling will help with the reading. I was really disappointed in my lack of ability to use Spell to Write and Read. It was just too much for me. However I really liked their premise and ideas, just too much for my brain to process. Anyone who has the program or seen it will know what I mean. I mean they have seminars to better learn how to use the program! I was a little worried about that when I first heard about the seminars. But the person who told me about it said that it wasn't something you needed, just a bonus. Another person, who was in the field of languages, told me it was the best program out there. So I got it. And like I said, I really like the ideas. I really, really wanted this program to work. I have been holding onto it in hopes that somehow I can make it work. Maybe it's just the season I am in, but it has been sitting there, staring at me making me feel guilty! Ha! So when I read about All About Spelling, I was intrigued as they use some of the same ideas. But they lay everything out for you! I know that working with the letter tiles are really going to help some of my girls with their reading and spelling. I am hoping to start the program come Monday. By then I should be done....at least close enough to start...with the prep work.

The girls have their last soccer game of the season tomorrow. I am hoping they will all make it to their games. It seems we have a small tummy thing going on. Nothing that has stopped the household from running as normal, but they clearly are not feeling great. Moira is on the up and up, Isabella hasn't had it...yet, and Flannery just started. I am assuming Jed has it as well as he 'lost' his afternoon feeding. But this evening he has been fine.

Well the baby is asleep (he went to bed REALLY early), dinner is done, the kids are still watching their movie and I need to do more cutting (the letter tiles). After the kids go to bed Jeremiah is going to teach me how to edit movies.

Two new videos up

I have two new videos up, both of Jed talking. They are not the original ones I had in mind of putting up, but the other ones need to be edited and I didn't get to them last night. So these will have to do for now. If you want to take a look you can visit my youtube channel. I have a link to my channel on the left side bar under 'my favorites', titled, "Southern Peaches Channel".

We just had a short meeting with his future speech therapist. He didn't want to leave as she has a lot of neat toys :-) She thought we should stick with the very low tech talking board for now instead of trying to get something more adaptable. That was a bit of a bummer. Her thought was that our goal is to get him to communicate with speech. And of course that is our goal....just what do we do in the mean time? The board is useful in very specific situations. However if he was playing with blocks and using his board to communicate and then wanted something to eat you have to switch out sheets for him to use the board for the new situation. His current SLP thinks it is a great idea to get him a more advanced device. So, we'll see what happens. We need an SLP to work with us in getting a device for him. As per the rules of insurance. As anyone who has been looking into AAC devices knows, they aren't CHEAP!!!! We are talking some 7 to 8 THOUSAND dollars for one! I just found out of a cheaper alternative that uses and IPod Touch or IPhone. The plus for that is that is is small and very portable. However it involves some needed fine motor skills that I am not sure Jed has. There are ways to help with that, but even if we get this device we are still talking at least 5 to 6 hundred dollars. A far cry from the first option, but all of that will come from our pocket. We shall see. Jed's private SLP (the one who is on board with getting him a device) will be here in a couple of hours, and I'll talk more about it with her.

I will still try to work on those other videos later. I am actually excited about working on them because I get to learn how to edit videos, something I have wanted to do for a little while now.

Thursday, November 05, 2009

videos coming

FINALLY!!! We had another bump in the road of trying to upload the videos on Jed's apraxia and we were finally able to get them off our camera. Now, I just need to edit them. The one of me just talking about our journey with apraxia is LONG! It was really late and I just kept talking :-) So I will have to break it up so that I can upload it to my youtube channel. The one of Jed actually talking had some interruptions that I need to cut out. But finally they are off the camera and hopefully tonight they will get edited and then uploaded. Uploading to youtube can take hours, so it may not get to my blog until tomorrow. Not that you are all dying to hear me go on and on about Jed's apraxia! I'm happy they are on our computer because it's a bit of a reminder of where we have been and I can look back on that to see how far we have come!

Got to go get stuff done. Cleaning and a visit from some friends are first up. Then I need to delve into their new spelling program, that I am really excited about. It came in yesterday. I spent last night and early this morning finishing up making extra sets of letter tiles, so that each child can have their own. Having their own was recommended, but at 14$ I decided to make my own. There are cards that I also need to make up on my own (part of the 14$), but those can wait. I'll let you know how it works out.
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