Update on Ian

I figure since I hardly have time to sit and blog these days, maybe I should just update on one kid at a time. You'll understand after you read how long Ian's update is.

We're having our go around with ARD's and IEP's now. I've been gleaning off all your stories and trying to learn as much as I can about what I can expect. With him being in PPCD for 3 years, everything was pretty basic. Now we're talking kindergarten for next year. I have to say, we are extremely blessed that he is going to the same school where Daddy teaches. And we're doubly blessed that he has had the teacher he has had for the past 3 years. She REALLY cares about him and our family and wants so much to see him go as far as he can. And he has a principal who adores him and is pushing for a lot more than most would.

The last ARD we had was originally supposed to be his placement ARD. Because Jim teaches in the system, we knew that Skills would be one of the possibilities. Shortly before the ARD date I was out jogging and was going past what would actually be his 'home' school in our neighborhood. All of a sudden I felt this HUGE weight hit me and my mind went crazy. By the time I got home to try to share it all with Jim, I was in tears and could hardly spit it all out. You know the stuff I'm talking about....it all starts with "Oh my, what's the best thing for him for school next year." Then it quickly flips to "I'm so sad at the thought that he may never get married and have kids." I know, I know....SLOW DOWN SISTER! Oh, I forgot to mention that previous to my jogging experience, we had a meeting to discuss the results of all his evaluations. That was the first time the school system had actually given him the label of MR to receive services. It didn't come as a shock, but to a mommy's heart, it hit hard. Luckily, I'm able to realize that it's based on a bunch of really idiotic testings that only allow for one correct answer to get the point. It doesn't leave any room for those who can think outside the box and still have the answer be in context. And it's the label that will get him the services he needs. It's not his life label.

I've never sat in on a Skills class before and so had visions in my head of no academic learning being done. I know Ian will be capable of learning to read, do some math, etc. So the thought of me sending him to school, paying for school taxes, etc. to have him not even be taught those things just infuriated me. So, Jim suggested I go observe a Skills class. The school he goes to now doesn't have the program, so I called his 'home' school which does have the program. Boy, did that open a can of worms! The next thing I knew, the 'home' school was calling his current school and one person in the district wants to know who said what to make me think he would be in Skills....yada, yada, yada. So then I was so worried that I had gotten his teacher in trouble, then the whole system thing got me mad again.....not a good week. I finally talked to the Skills teacher at the 'home' school and explained to her that nobody at his current school led me to want to observe. It was mine and my husband's decision. She was very nice and just explained that the head of the Skills program for the district couldn't imagine why I would want to observe at that particular school because Ian is higher functioning than what is offered at that school.....they have the low end of the skills program. Long story short, I decided not to observe at that school, or any other for the time being. I was already drained by the drama.

The next thing I knew, his placement ARD turned into an Amendment ARD because someone else from the district came to observe/evaluate him. I've decided that they just don't have a good program for kiddos with FX but not autism. Under their testings, he did not qualify as autistic or ASD. He's way too purposefully social. So, we're pushing for a full-time shadow for him for next year. I know there are a lot of you who want your child in a regular ed classroom and for them to receive all the same things as a typical child. I don't have a problem with that. But that's not where Jim and I are. Because we don't have him on any noticeable dosages of medications, he is sooooo hyper that it wouldn't be fair to him (or the ONE teacher) to be in a classroom with 20+ typical kids. He's just way too impulsive, loud, just wants to have fun, etc. Not to mention how over-aroused he would get with that many kids. Okay, enough about all that. I'm anxious about his next ARD and curious to see what they will have for us. Oh, he did qualify for music therapy and started it this week. I wish I would have known about it earlier in the school year so I could have pushed for it then. I never even knew they had it.

And thanks to fellow blogger Umma, we will be starting Ian on folic acid therapy. I'm going to call his neurologist today to talk to him about it. Will let you know how it all goes.

Potty training is still going.....very well as far as tee-tee goes. His sticker calendar is FULL everyday. He still won't always go completely on his own, but he generally responds well and quickly to the timer being set. Most of the time he'll tell me to set the timer! Poop is still a no-go. He'll get there. We're just thrilled with any progress that gets made. He loves to see Mommy so proud of him after he tee-tees. Oh, if anyone has any grand ideas how to get him to go on the 'big' potty, please let me know. He only wants to go on the 'little' potty. Well, he's really too big for it. He's tried to stand up at the 'big' potty, but he won't stand close enough to pee in the toilet. And because of his balance issues, he won't use a step stool to try to sit on a potty seat on the toilet. So, needless to say, when we go anywhere, pottying doesn't really happen. UGH!

To sum it up (I know, finally), Ian is really doing great. He still has impulsivity issues and some agression issue with brother and sister (he makes them cry a lot), but he has come so far. His vocabulary and enunciations are great. Even strangers can understand a lot of what he says these days. Even though he makes his brother and sister cry a lot, he is also very loving toward them and likes to get involved with playing with them. Even with other kids, he really tries to learn how to play with purpose. He's still a wonderfully happy kid!

And most importantly.....SPRING BREAK IS NEXT WEEK!

Getting Old? .....Just in Time

It seems, according to Avery, I'm getting old just in time. The other day we were waiting in line for drop off at school. She noticed some dry skin on my face and asked, "Mommy, are you getting old?" The funny part about all this is that I turn 40 later this month. You think she knows????????

TO: pddnosmom123

I'm gonna blog again later to catch up some...okay a lot. But I want to comment to PDDNOSMOM123 who posted a question on my last entry. I haven't even checked my blog lately, so I just got it. I tried to click on you, but it didn't lead me to a blog. Hopefully, you find this.

Ian was diagnosed at 18 months old. He was not 'diagnosed' with autism first, and he still does not qualify under the checklist of autism from the school system. Someone (sorry, can't remember who) replied back to you about the difference between an autism description and FX diagnosis. I agree that I would ask for the FX test. Although there are similarities between the two, there are also differences. When dealing with each, it's a good idea to know exactly what you're dealing with....especially if it's both. Not to mention the services you could receive. Please keep me updated.

Dentist = Vomit x 3

Ian went for his first dentist appointment a couple of weeks ago. Actually, it was his second, but the first dentist called it a "happy visit" since not much was done because Ian wouldn't let them in his mouth. So, in the meantime I found this great pedi dentist that we took Benjamin to when he had bruising on his gums (due to teething, ouch!). I had told her about Ian and she had heard of Fragile X. That's the doc for me!

So we get there and Ian's a little on the nervous side. I explain to the dr. that he will probably vomit because he has a huge gag reflex, particularly when he gets upset. Add in the fact that someone will have their hands in his mouth, and that's a recipe for disaster. He ended up having to lay on my lap with my legs around him. We just tried to talk him through it all. She didn't overdo trying to brush and all, but she did a good job at making sure she did what she needed to do. However, in the midst of it, Ian screamed and vomited.....THREE times! And get this, the dr. apologized to me because she had tried to keep it off my clothes.

As I made his next appointment for 6 months, I was already dreading it. The kid does better getting a shot at the pedi's office. But he was quite happy after it was all done and we got to get a burger at "Old MacDonalds".

I Am Still Alive....I Think

It's been so long since I've been on blog land. I'm looking forward to catching up on reading everyone's entries that I'm so behind on. I think I just got in such a funk cause everything seemed to be so negative, I didn't want all my entries to be so pessimistic. Quick, quick update:

So much for dying without making a turkey. We had Jim's family come to our house....don't ask how that happened. That made 10 adults and 4 children. Okay, truth be told....Jim made the turkey. We had a really good time, and I was so glad we had it at our house. It gave Grandma and Papa a break this year. Plus, even though I kept telling everyone that Jim cooked, I cleaned, I still got all the credit for the meal. I finally gave in and just said, "Thank you." How great is that!

Trip to Oklahoma City to be with my family was much different. Everything has been much different since my dad's stroke. I am very thankful that he is alive, walking, talking. However, I want my pre-stroke dad back, and my mom wants her pre-stroke husband back. It's been very difficult for my family. I think I feel like I get to 'run away' from it by being here. But going back home shows me how real it really is. I felt like I either cried or was griping at Jim for some reason the whole weekend. It definitely forces me to concentrate on what the meaning of Thanksgiving is and to remember all the blessings the Lord has poured down. Blessings are great, but I also have to remember that we were never promised an easy life of roses. It's what I do with all the hard times that determine how thankful I am for Jesus. After all, He didn't exactly have a rosy life when He walked the earth. Next....

Benjamin is officially a toddler!!!! A clumsy one, but oh well. While he's still quite weak and can't walk for enormous amounts at a time, he way prefers to walk on his two feet than to crawl. I had forgotten how adorable they look.

Avery is pretty much officially potty trained. The only thing we haven't tackled is nighttime. The latest joy is that she has finally started to poop more on the big potty than on the little one. Cleaning that thing out gets pretty gross after a while. I'm so proud of her.

Ian is still a day by day. We've been struggling a lot more with his behavior. Jim is ready to go for stronger meds. I AM NOT. This is a big source of contention with us. Probably the hardest thing we've had to try to work together on. More on that later. I just love my little boy so much......

My friend, Rian, had her baby boy!!!!! His name is Malachi "Kai" Ellington, and he is adorable. He was born November 17. I got to see him come into this world and it was amazing. Rian did great. I already can't wait for him and Benjamin to play together!

That's about it for now. Thanks for those who wrote to check up on me. I'm still in a bit of a funk, but working through it.

I've Been Tagged

Thanks Vicki at http://hollyzzdavis.blogspot.com/ for tagging me with this meme:

The Rules:
1. Link your tagger and list these rules on your blog.
2. Share 7 facts about yourself on your blog. Some random, some weird.
3. Tag 7 people at the end of your post by leaving their names as well as linking to their blogs.
4. Let them know they are tagged by leaving a comment on their blog.

I apologize now for the incredibly boring list you're about to read. Sorry, no cool pics.

1. My nick-name from my childhood best friend's dad was Donna Doo-Doo. Don't know why, never figured it out, never wanted to.

2. I love Taco Bell's Frito Burrito and wanted to protest when they quit making them.

3. I've always wanted to climb Mt. Everest. Backpacking in Alaska is the closest I've come.

4. I sucked my thumb until I was in high school.

5. I'm 39 1/2 and I've never made a Thanksgiving or Christmas turkey or ham.

6. I want to move to North Carolina before I die.

7. Bodily function sounds crack me up!

Okay, sorry, that's the best I could do....and it took 2 days to think of. You watch, I think of some great things after I post this.....nah!

Your turn. Here's who's tagged next. If you've already been tagged....hopefully I'll get to catch up on my blog-reading soon.

http://rismoody.blogspot.com/
http://joyfulhomemaker.blogspot.com/
http://landonandrew.blogspot.com/
http://lifewithmyxmen.blogspot.com/
http://mommyluann.blogspot.com/
http://myfivemen.blogspot.com/
http://xdadxdad.wordpress.com/

Dad Update; Argh! on Drugs; Nine Years; And Poop Galore

After a week of being with my dad, I'm back home now. The Lord let me leave with more peace than I thought I could have. During the day before I left, my dad was very coherent and his speech was great. He was very tired and sleepy still, but he didn't have many disoriented moments. They have him on Tylenol now instead of the morphine. His bandages are off to expose the staples (27 of them!). My mom said he had a very good and restful night last night. He was able to eat food (dysphasia diet), and his swallowing test came back clear. So please continue to be praying for a full recovery and for him to get out of ICU, and also for no other issues to arise. And keep praying for him to come to know the Lord as his Savior through all this.

Now the yuck part. We're still working on the medication stuff for Ian. It's been a bit of a contention area. I think we aren't giving it enough time, not to mention it doesn't seem really fair to judge it after only 3 weeks, when one of those weeks has been complete chaos for Ian...mom gone for a week, dad taking care of them, other caregivers taking care of them, and green snotty nose. Hmmmm, sounds like enough to throw ME over! So, we've taken him off the Strattera and have an appointment with the new neurologist on the 24th....hoping for a cancellation before then.

Today is our 9 year wedding anniversary! We both agree that we are even more in love now than when we first married. The Lord can do great and amazing things. He really has shown us a lot during our marriage, especially during these hard 3 years of our 3 childrens' diagnoses. I've decided that for us there are 2 options in our life circumstance....we either work together, or we don't. And our working together has to include the Lord as head of our marriage. He's much better at peace than we are. Anyhoo, I'm very fortunate to have Jim as my husband, best friend, and daddy of my children.

I can't forget to mention my darling Avery. In the last week she has twice disappeared to bathroom with us knowing. Then we hear a sweet little, "Mommy!" or "Daddy!" By the smell on our way to the bathroom, we know what to expect. Our little girl has gone poop completely on her own! I am sooo happy and soooo proud.