Tuesday, July 7, 2009

I "was" doing good,

. . . . . rockin' right along - posting frequently. And then . . . . I disappeared for a few days! I was trying to post. I had so much to say! But I never could get on the computer!!! Now I can't think of anything I wanted to blog about?! Figures! I think I still have pregnancy brain even though I'm NOT pregnant!

I AM NOT PREGNANT! I just wanted to say that again! It was the first time in several years that I went to my yearly and I didn't hear, "Congratulations Kim, your going to have a baby." It was a wonderful and glorious feeling! Ahhh!

Speaking of pregnant - I know you are still waiting on that twin/2 headed baby story! Lonnie and I are going to vlog about that together! You can see us in action - Beauty and the Beast - the Bold and the Beautiful - Jon and Kate - Frick and Frack - that about sums us up! hahaha The story isn't even going to be that good because you have waited on it for so long.

I have no idea who is really interested in this - but after a couple of posts lately that have been about my struggles with my children's delays, I thought some of you might want some specifics as to what is going on with each child. I don't really know how specific I've ever gotten so this might help you all understand how it goes around here.

So, here is the break down . . .

This is Hudson - my oldest. He is 4. Incredibly bright. And I mean that. Now, I know most parents think that. For the longest time, I would describe him as "bright" not realizing it was a sign. And let me explain further. Hudson took forever to talk. And when I say forever - he still goes to speech therapy. He couldn't say phrases, much less sentences till about 9 months ago. BUT he loved the match game. The ring stacker was mastered before he could really hold his head up. Puzzles were so easy for him. He could point out and tell you a trapezoid or parallelogram or any shape you didn't know had a name. He could tell you which was magenta and which was fuchsia {because there is a difference } and he could show you the colors to mix to get which ones. It was obvious from the beginning that he was a "problem solver." He hated social situations and was completely uncomfortable anywhere but at home. He hated elevators, parking garages and loud noises. When the twins were born, he completed ignored them for the first 18 months of their lives. Seriously, he had NO IDEA they existed. Quirky - you could say that. Strange - definitely. But I accepted it as that was just who he was. Yes, I will be honest and tell you that I thought he had to be one of the weirdest kids I knew - and he belonged to me. Fabulous. But he could keep a beat with any rhythm. He loved numbers. He could add. He could subtract. He loved letters. He knew all the sounds {long and short.} He could tell you the vowels.

He was going to do really good in school. And that is what I tried to tell myself. Then finally, after alot of talking with my pediatrician, I had him evaluated for speech. His scores were somewhat low - he definitely had a speech delay.

While talking to my speech therapist, I mentioned how it doesn't eat much. Mostly snacks. No sweets. No mac n'cheese. No mashed potatoes. blah, blah. She evaluated him for feeding therapy. Uhmmmm, yeah - totally needed that too! Major food aversion. But he has gotten so much better. He will "tap" alot of foods on his tongue - so we are headed in the right direction.

I also lined him up for an eval with an occupational therapist. It was obvious that he had some issues with "activities of everyday living" so I really couldn't wait to hear what they had to say. {Hear that sarcasm.} Hudson has sensory overload at every turn. He jumped and screamed at the same time, all the time jarring his body looking for some missing sensory. He knows he is missing "something" but doesn't know what it is - so that is what he does, jumps and screams simultaneously {that is the best way I can describe it.} I can give you so many examples of his crazy behavior - but this post is going to be long enough!

He has been formally diagnosed with developmental delays. All his therapist feel very strongly that he has asperger's syndrome - which is a form of autism. I agree with them. Just the fact that he knows what he knows on his intellect level and has no social abilities, screams what I don't want to hear. BUT he has not been tested for that, nor do I plan to have him tested at this point. His therapy is as if that is his diagnosis. So, he is getting "therapatized" {YES, I made that word up!} as if he has it. So why label him if I don't have to - right?

Completely unrelated - As of last November, he was diagnosed with nephrotic syndrome - we are assuming it is minimal change disease if you want specifics. Everytime we think we have nipped it, it comes back. And back on steroids we go. Anytime a viral infection is in our home, it triggers the nephrotic syndrome. And with 4 kids - something viral is in our house every quarter! Nice - huh? We are told this is something he will eventually out grow. Please, please!!! These steroid are killing me!

Hudson has come a such a LONG way! A 180 - really! It is crazy!! The conversations I have with him are great. We can ride in elevators, park in parking garages, go through car washes, go to birthday parties, walk into school with a smile on, etc . . . . I could keep going. And tonight, he picked up a book that we have never read and read the first 4 sentences without help {remember he is 4!} He is amazing!

Meet Carson. He has a mouth full of popsicle in the above picture - that is why he looks funny! He is 2 and a half. Daddy's boy. With a vivid imagination. My only child that pretend plays. He can go to an imaginary world - whether it is a pirate ship or hanging with his bestie Shrek - this boy loves pretending. Huge difference from Hudson's mechanical mind. HUGE DIFFERENCE! He was diagnosed with the WORST speech delay of any of the boys at around the 18 month marker. I was really surprised. He seemed to "talk" more than Hudson did at that age. AND he actually understands you! What ever you ask him to do, he would do it. The problem is when he speaks, you can't understand him. Now, he is really saying something. You can ask him to repeat it, and he says the exact same thing everytime - just you have no idea what it is!

Mommy - "Maddy"
Apple - "atel"
Tiddles {our dog} - "Tivvels"
blankets and rags {his lovies} - "banks an ags"
Llama Llama Red Pajama - "Wam Wam Red Jom"

I feel so sorry for him when I'm trying to figure out what he wants because you really don't have a clue most times. Really you don't.

But he is a great eater {I once thought he had a food aversion, too!} Just going through the "typical picky" stage!

Here is Lawson "Laws." The identical twin to Carson. Two minutes younger. I need to point out that Carson and Lawson do not have the "typical" twin relationship. They do not have a special language. They do not hang out together. Carson prefers to be Hudson while Lawson would so much rather be alone. Laws is very similar to Hudson with most of his behaviors. Only he eats almost anything. He does have a little OCD. And he is obsessed with numbers. He can count by two's {odds and evens,} by 5's, 11's - you name it. Once he sees a pattern, he is stuck on it. Up until recently, he has avoided most all eye contact. Now, I can get him to look me in the eyes for a long period. He has one of those minds that takes things apart and puts it back together. Would you find it strange if your 17 month old, put a 101 piece puzzle together in 25 minutes? I didn't find it strange that he put it together, but that he sat for 25 minutes with a challenge?! That is when I knew the road was going to be longest with Laws.

He doesn't talk therefor he is in speech therapy. I've finally gotten to where I can say "I want . . ." and he can fill in the blank. And it will be stuff I didn't know he could say - such as "breakfast" or "pudding." For the past few days, he has been stuck on yogurt. When he does speak, it is fairly clear. Or atleast there is no question what he is saying like there is with Carson. He has come along way compared to his screaming all the time.

He, too, is in occupational therapy. He is not too bad in social situations, but he doesn't like to share. I know, I know - what 2 and a half year old does? But trust me - even in the NICU, the two boys shared one of those acrylic condos. And Lawson would always kick Carson out of the nest - constantly! It was crazy!! Should have seen the problem then! And since he can't communicate, things such as sharing rock his world. Deep compression works wonders. And he loves to have all his joints "squeezed." I've found that that is the only thing that will get him back to reality when he gets overly upset.

He also goes to physical therapy. I noticed for a long time, that he would fall over as soon as he would stand up. Or he would fall after a few steps. And to tell you the truth, I laughed and would make a comment "been walking long?" or "boy, I see ballet in your future!" or just something like that. After his PT assessment I was told his large motor skills were above average. BUT that he didn't have much core strength. Before all of this, I just assumed all that was the same - large motor and core - well, it's not. He hates tummy time. Which is very similar to what you do with babies. And at first I was all kinds of concerned that this was my fault because the twins didn't get alot of tummy time due to some incredibly bad acid reflux. But I've been assured this is nowhere near my fault and that this stems from other issues.

Just as Hudson, the assumption is Lawson shares the aspergers. And the same goes that he is getting the same therapy - as if he has aspergers. So, no formal diagnosis - and none if we can help it. BUT ONLY IF WE CAN CONTINUE GETTING THE HELP WE ARE GETTING! As soon as something happens and we can't get the same therapy, I will have him evaluated for aspergers.

And then we have Emsley - baby "Em." A 15 month old typical baby girl! Who does not have a tooth in her mouth - no, I do NOT feel a single tooth bud!! She loves her purse. Loves dolls {and Barbie - already!!} Loves her shoes. Likes to wear something new everyday. Understands everything I say. Says a ton of words. Likes to look at a book upside down {none of the boys ever did!} Doesn't recognize a single letter, number, shape or anything like it. Eats anything - to include dog food! She puts things in her mouth. She plays in the toilet if the lid is left up. Likes a crowd. Loves to entertain. And crazy - in a good way. Totally opposite of the boys in every way.

In a 35 month period, I had 4 kids people, it was going to be crazy no matter the circumstances!! I'm just shocked that I don't drink! Or do drugs! Or anything that falls in between. haha!

And since this blog is actually used for business purposes, a little sneaky peeky for your viewing pleasure . . . .

If you are a friend on face book, you have already seen this painting in it's entirety {one of the perks of being my friend!} tee hee - I'm so tired! I've got to go to bed. I should be back tomorrow!


Lauren said...

Honey, you have 4 children and an AMAZING painting talent...rock on to you! You are an inspiration!

Tiffany said...

Your children are adorable! I still don't know how you do it, but give you a lot of credit. You are so talented!

Sara F. said...

Wow. Puts my any child issues I have into perspective! You are a trooper and I totally agree, I don't know how you manage to paint in the midst of all you have going on--it hope it's therapeutic for you!

Tara said...

First off, I love your blog! I too am trying my hand at painting and I stay home with my 2 babies also. Before though, I worked as a pediatric OT. Thanks for sharing your stories of your children. They are beautiful and precious! You are a strong mother....never lose hope! It's families like yours that make our job such a blessing.

Tammie said...

I teach special education and find your story amazing. Autism and Aspergers are more common in boys, but not so common in one family. I teach HS students and have a few with aspergers and they are wonderful. Bright, fun, and quirky. It will all work out, you are doing great.

jess said...

Oh Kim, wow you've got a full plate, but I'm sure you wouldn't trade it for the world. Maybe a nap though!:)
I'm so excited about my sneaky peeky! Ha!

MeganSloan said...

I'm like Tammie and work with hs students with Asperger's. I've also worked with an 8 year old who was Autistic. I enjoy them all because of their difference. And you are doing great if you already have them in therapy. I agree with you on doing the formal diagnosis - just do the therapy for now, wait for when they do school to do the diagnosis (if you're waiting that is). Things will work out through patience and time, which you obviously have! Your children are adorable and your art is amazing. :)

Annie said...

Adorable kiddos!! You're a great Mommy!

I love your work, I can't wait till the day I have a little one and I can place an order ;)

Anonymous said...

thanks for the update on the kiddos.. where they started, and how they've improved through their therapy. i'm sure it's inspiration and hope for those going through similar situations. as i've said to you before.. your strength is amazing, and God has truly blessed you with 4 beautiful little ones to cherish.
the sneak is great.. LOVE the pearls!! i am really loving the 3-D stuff you're starting to add to your work!! :D

continued blessings,

les_mason_curt said...

bless you! you are totally my hero... I can tell by the way you talk all of your kiddos are super smart and will out do all average people in their life times. You are probably looking at being the Mom to kids who start companies liek Google, invent things like the internet and so on.... I know they are going through a lot now, but just think of the things they will accomplish!

I gotta call soon so we can chat...

ps- my son hates to share too, but he is spoiled in the worst way...

chesley said...

girl, you have really got your hands full! there were 4 in my family & i was the only girl, but i was the oldes, so opposite of your 4. i, now, totally marvel at how my mom did things with us when i can barely function with 2! ps. i didn't have any teeth until i was 16 months old, so maybe there's one coming soon!

Meagan said...

I am SOOOOOO glad you wrote this post! I knew, generally speaking, about all your babies, but it was neat to get a closer look! I don't know how you do it, but they are all precious as could be! And you... well... you are just an inspiration! :-) And funny to boot! ;-)

Danine said...

Your 4 beautiful amazing kids are awesome just like their mommy (and I'm going to assume daddy ain't bad either since you've got talent with everything else, LOL!). And can I say Carson and Christian speak/spoke the same lingo! I'm telling you kiddo, Carson will be babbling away comprehensively before you know it!

Deb said...

I started praying for you when I first started reading your blog last October/November time frame (you were making Fa La Las). Now I know how to pray more specifically (help that keeps coming so we don't have to have the boys "OFFICIALLY" labeled).

Thank you so much for sharing your story, Kim.

Robin said...

Kim, you just amaze me! I just don't know how you do it! Thank you so much for sharing your story with us!!


Robin :o)

Micah Wolf said...

wow, what a post. I enjoyed reading about your kids. I practiced pediatric PT for 2 years so I know what you are going through. It is great that you are getting them all some therapy now. It will help so much down the road. Keep up the awesome work!

Paige said...

You are an amazing mom!! Loved reading this post. Can't wait to see the finished painting.

Be blessed!

Holli said...

Thanks for such a wonderful post Kim!
I can NOT believe Em still has NO teeth! What is up with our girls? KB is still holding strong with two!

lizroberts said...

what amazing children you have. they are lucky to have you, and you are lucky to have them. you're doing a great job. AND, you are one talented girl!!

Teri said...

It has been forever since I last commented, I think when you started therapy with the boys. My almost 9 yr old son is autistic and has a mitochondrial disorder (which means minimal immune system.)

You are doing a great job! It is a hard job and there are days when you want to stay in the fetal position, but you rock!

Allowing your kids to be themselves and giving them the tools to function is such a blessing.

While my son is "formally" diagnosed, I usually tell friends not to. Unless they need it for services, there really isn't a reason. We don't ever use the diagnosis and it has only been recently that we told his older brother what was "wrong" with him. We didn't want David to be known by his diagnosis or given an "out."

Megan L Hutchings said...

You are an amazing mother...no doubt about it. Thank you for sharing little odds and ends about your adorable kiddos. I can only begin to imagine how crazy, fun, and joyful your days are :)!

J Family said...

Wow! I couldn't help but laugh at the end when you were describing your little princess and think of how she will drive those boys crazy one day (if not already) I am sure. You are awesome and I have a great respect for people who can take the not so good and be so positive. I don't think I have that trait.

shabby girl said...

Those little faces are so adorable! I love your stories about your life. I think you are an amazing mom too. And your sense of humour will go a long way in the day to day stuff.
Thank you so much for sharing. You never know how many people you help by putting it out there.

Leigh Ann said...

I totally understand. Boy, do I understand. EG is total opposite of Evan in every way, too. I'm so proud of you and all the work you do with them and having them in therapy. I know you already see a big difference and it will keep getting better as they get older. That's one thing I've learned in my own journey.

Tanya said...

I have admired your work for some time, but have recently found your blog and I feel a kinship of sorts. I am a mother of 4 also trying to run a business from home (sewing, not painting). My five year old boy was diagnosed with autism at age three and my seven year old son has no "official" diagnosis, but we strongly suspect Aspberger's. I feel your pain and I get your sense of humor. Sometimes, ya just gotta laugh. Thanks you for your blog. I enjoy it so much. BTW, I notice you use "crack" a lot when it comes to things that you enjoy. ME TOO! My sister in law makes the best cinammon crack pecans EVER! LOL!