So Long! Farewell! Auf Wiedersehen, Goodbye!

Goodbye binkies. Hello big girl.

This weekend we decided to pull the plug on the cork. Neve isn't quite 3 yet, but it is time. She only uses it at nap and bedtime, but she doesn't need it anymore. It seems to just be a habit now rather than something needed to soothe....so time to say goodbye!

We have thought about it before but we have hesitated because of Nate. Nate was still using a binky at bedtime, but he was also using one during "downtime" in the afternoon. He constantly grinds his teeth and needs oral input at all times, so we let him have it. Last month we ordered some "chewy tubes", made for kids like Nate, that are a bit more appropriate for him to get that input he needs. We had tried these when he was younger and he wanted nothing to do with them. THIS time though, he took to them. We put the binkies away now during the binkies away during the day now, so Neve won't see that Nate has them either.

We headed off to Build-a-Bear, where Neve was allowed to pick any bear she wanted. We stuffed her binkies inside and told her she would sleep with Binky Bear now that she was a big girl.

We let the kiddos play in the play area for a little bit and they had a great time...

..well, it might have involved some pushing from Nate, but in his defense, Neve CAN be a bit annoying.lol.

Nap time yesterday was rough. Neve realized that Binky bear was NOT giving

back the binkies and she kept looking for his pocket (where she assumed he was holding her binky). She stayed in her room for 2 hours but never slept. ((SIGH))

Bedtime was better. After screaming at Binky Bear to, "Give it back!", and clawing at his seams, she fell asleep. Today she fell asleep for her nap with only a small protest. Progress.

Who you callin' a witch?

We have survived the last week of Fall break. PHEW!!!!!! That was rough. I can't wait to get an aide lined up for Nateman. Poor kid. He just doesn't find a lot of joy in "things" so it can be challenging...and Miss Neve likes to push her buttons (like any 2 yr old sister) and he has complete meltdowns. Ahhhh...somebody make me a margarita!!

Aaron was able to work from home today so he was able to help out with Nate. Neve and I had quite a day. We started out making gluten free banana chocolate chip muffins. She LOVED doing this!!!

Then we talked all about Halloween and made a witch. Neve loves witches. hehehe. ..and since her school has banned all witches, ghosts, devils, and goblins, I guess she better see them at home. :)

Here is Neve's witch. The girl is obsessed with glue sticks.ha!

I am not sure what the rest of the weekend holds. It is hot as hell here still so I am not sure we will pumpkin patch it quite yet. I think Aaron would kill me with all my complaining. :)

No, Virginia, there is no Halloween...

Well we have been in our house now for a month or so...and haven't made much progress with it, lol. Nothing that we have seems to FIT. :( oh well..that just means I get to shop!!
School has been better the past week or so for Nate. Well, he is actually on Fall Break right now (which is INCREDIBLY hard on him AND us!) but the week before break went well. We "won" our fight with theschool district regarding Nate's IEP and overall safety. He will now have an aide as well as numerous one on one therapies a week. I mean, here is what it comes down to, if you ask me. My son is. for all intensive purposes, non-verbal. He has no real words of his own. Yes, he can label and yes he can script (and I am incredibly grateful as he has such an amazing voice) but the functional communication is not there...and until that day comes, he will receive every ounce of speech therapy I can squeeze out of the district. He will now receive 3 sessions of speech, on different days, of one on one therapy in addition to all of the group sessions he receieves. I am happy with this. For now, lol. ...and this is just in the area of speech therapy. Don't get me starte don the rest. :)
Anyway- we won. They caved on all issues and agreed with my requests (see:demands).woot woot!
Nate also has stopped getting hurt at school. Finally. He still has scars on his face from Lil' Wolverine, but he will survive. It gives him street cred.
On to Miss Neve. She is still doing great. Her new thing is that she has renamed our entire family. We all live in Gabbaland now. She is Muno. I am Foofa. Nate is Brobee. Aaron is Plex. Grandma is Toodee. ..and of course Glenn the cat is DJ Lance Rock. SHE named us all and it's pretty funny. I love her little imagination. Here are some fun pics of her fromteh other day. She liked gettingher picture taken and Nateman doens't. :( I wish I could get more pics of my handsome guy, but I hate torturing him. He whines when the camera comes out so I stop pushing it. Anyway, in case you were wondering why he isn't in many pictures...

Halloween is on the way. Neve is so excited to dress up. Nate just wants to wear normal clothes..so we will do our best. :)

Our neighborhood is beyond lame. It is an LDS neighborhood that refuses to celebrate Halloween as it falls on a Sunday. Lovely. I am not really sure what our backup plan is yet. Maybe we should hit up Leisure World (aka Seizure World), which is the retirement community near us. I am out of options. I used to love Halloween. We miss home.

No Place Like Home

We have finally moved into our "real" house and we are no longer staying at the rental house. Phew! That was a VERY long six weeks. This home was not our first choice, but we are making it work. We were in contract on a short sale home for about 4 months when the seller backed out. EXTREMELY FRUSTRATING as we had basically a day to buy a new home. So- here we are! We will make the best of it and hopefully it will feel like home to us soon.

School update:

Well, I suppose you have to take the good with the bad, right?

The good is that Neve is thriving in preschool. She loves it SO much and CANNOT wait to go back after each class. I volunteered in her room last Tuesday for the first time and I was just so proud of her. She is a great listener, helper, worker, and friend. She even teaches the class sign language every week during "letter of the week" time. I am proud to say she knows the entire alphabet in English and in Sign Language. Go, Neve! ...and to think we had doubts about sending her so young..tsk tsk. This weekend was her turn to bring home "Curly" the class puppet pet. We took Curly on a few outings today too. We documented it with pictures and there is a journal that we write in and paste pictures of our adventures. Neve just loves Curly!

The "bad", or maybe I should say the "challenge" is Kindergarten for Nate. I will say that it is ever-so-slightly better...but not by much. I wish it was just ONE thing we could focus on, but it's a whole combination of things. First, all of the changes Nate has gone through these past few months are hard on anyone, let alone a child with processing problems. Second, there is a safety issue. We have been called by the school nurse FIVE TIMES in four weeks due to bodily injury to Nate. Alarmed? I am to say the least and I am making sure the entire school hears about it until he is safe. Apparently there is a child in his class with behavioral issues (well, join the club) that is taking it out directly on Nate. Trust me, I get it -to a degree. Nate is no angel and has no clue how to keep his "hands to himself". BUT, there is a huge difference. Nate pinches. Nate pushes slightly. Nate attempts to scratch hands. This is 99% of the time directed at a teacher, therapist, or aide that is attempted to redirect Nate to the task at hand and he is lashing out, in protest, the way he knows- physically. This child has left multiple bite marks on Nate's chest on multiple occasions- breaking the skin and bruising him horribly. This child clawed down Nate's face by his eye leaving Wolverine-type marks and completely tore open the skin in long gashes--I am assuming nail clipping is a challenge in their household by the looks of the marks.

So anyway, this is all an obvious concern to us as to HOW it keeps happening and why the proper supervision is NOT in place as outlined in our current IEP. Plus, I can't help but think that a bit of Nate's anxiety at school could be out of fear of this kid. Wouldn't you hate school if you left school bleeding every week? I would!!!!!!

SO- we are in the process of making sure Nate's safety is a bigger concern for everyone involved. :) If that doesn't work, Nate will just have to carry protection. Ever see an Autistic kid with a stun gun?? I kid, I kid....

To top of Nate's lovely school situation, we still have yet to agree on an IEP. The school tried to push me a bit..but they will give in. I am sure of it. I don't drop this stuff easily....and I have reasoning behind everything I say..just try me, Greenfield. :)

Other than all of that, we are surviving. We have hit a few parks during the wee morning hours when it's only 105, ha!, gone to a few indoor bounce houses, and had a gazillion smoothies. :) We miss the rental house pool as we had such a blast there everyday after dinner. I know Aaron is plotting how to get a pool at our new house too... 

This morning we took the kids for haircuts. Nate is a pro since he goes every 2-3 weeks, so no problem there. This was Neve's first real haircut though. We took her once when she was a baby for a bang trim- and that was AWFUL. She really flipped out back then. This time was a completely different story though. Neve loved it so much. She was really good and was super excited for sparkles in her hair. :) We also now realize that her curls are here to stay. I, in the back of my mind, thought they MIGHT be baby curls and once we cut them off, it would come in straight. Um, no such luck. Her loaf curled up even tighter like an old lady's perm. Hahahahahha! She is darling and will grow into the curls someday, I know ! Mom just doesn't know how to deal with curly hair!!! My hair is PAINFULLY straight.

We HAVE enjoyed being closer to Grandma Ding. Neve just loves her so..and looks forward to her visits so they can play school and such. It's very cute. We are still terribly homesick though. I certainly miss MY friends and didn't realize how much I looked forward to seeing them in person..but it's so sad to watch Neve on the computer looking at photographs of her friends and saying, "Can Lucy come play house with me?". Breaks my heart.

I guess that about sums it up from here. This next week will be busy with IEP meetings and such. Good times. :) I will try and load more house pictures too. It's a, eh, um, work in progress.

The Wild West

Talk about change, lordy! I have no clue how these two little ones are doing it because I am a mess!
Leaving our home in Ohio was incredibly sad and such a whirlwind. We stayed in a hotel, first time for both kids since Nate was an infant, and flew out first thing the next morning. Neve loved every second of it all- from her big bed at teh hotel, to rolling her Dora backpack through the airport, to flying on the airplane. Nate, on the other hand, had a rough go of things, Overall he did fantastic, but the actual plane ride was hard. He HATED the seatbelt and that he had to be contained.That made takeoff and landing difficult, but otherwise the plane ride was fairly smooth. he even used the bathroom on the plane and I would have thought for sure he would be freaked out by that- that thing scares me!
We are now in a rental house, awaiting the closing of our new home at the end of August (fingers crossed). Things have been hard here- especially sleeping. Nate is confused and scared and I can't really blame him. he isn't the type of kid that rolls with things. Then, to add more to his plate, he started school. We had planned on sending him 5 days a week, part time from 8:30-12:30...BUT the schedule was announced for the typical kindergarten kids and all of their "specials" like art, computers, etc are at the very end of the day from 2:30-3:25. This is Nate's only time to be integrated with the typical children so we need to send him all day. *gulp*  7 hours is a LONGGGG day --for Nate AND for Mom and Dad. We will see how it goes.
On a brighter note, the kids have been loving the pool. It's nice to find something we can all do in the 110 degree weather!!
I am taking pictures but do not have a PC at the rental house so I will upload them soon..for now, here are some pics from my cell phone!

Full steam ahead

The school year is coming to an end..we have one more week of school until my baby is officially a preschool grad and it's on to summer school, then kindergarten, then college. :)

IEP has not been officially signed by me since I am very particular about wording. It's all in the details. :) Everything has been agreed to, so now they just need to write it to my satisfaction.

I am posting a video of Nate drawing on his magnadoodle. It has FINALLY clicked that he can draw actual pictures- woo-hoo! We are thrilled. We have been working on a person, tree, house, etc.. and he is flying through them all. Go NATEMAN!

Head of the Class

Well, it's better than last year..haha. Nateman looked a bit stoned last year..so I believe we have upgraded to "uncomfortable". :)

Hmmm...what else is going on here...Nate is due for his yearly allergy testing so we will be scheduling that soon. I wonder what lovely additions we will add to our list this year?? My allergies are going nuts lately with all the trees blooming this time of year- but Nate's are fine, so I think he is ok in the "tree allergy" department it seems.

Nate has about 6 weeks left of school and then it's on to summer school! We met with his summer school this week to get things in order...and everything looks good!

..and here is a picture of Nate and Neve today on Earth Day! Go Green!

Reading Rainbow

Could we possibly be any prouder of our stinkin cute little dude? I don't think so. Oh, and feel free to cheer for him. :)

sighs, victory, and a movie :)

The results are in and I can now breathe. Neve did not inherit my Fragile X.
Can you hear my ENORMOUS sigh of relief?
I am still in shock as it just doesn't seem possible that Neve can be on track developmentally. Our world is filled with challenges and daily struggles for Nate..how did she come out unscathed?? How is that even possible? ...but I am learning to not question it and just love the heck out of my little wondergirl. I hope the world always comes easy for her and she can always have her eyes wide open to see how that isn't the case for so many other kiddos. I promise you I will raise my daughter to be her brother's biggest advocate and to see how important it is to make a difference for those around her.

There are a lot of changes going on at our house (BIG ONES!) and hopefully we can fill everyone in on the details soon. After the first week in May we should have Nate's schooling issues secured and we won't be in HUSH HUSH mode anymore.

IN THE MEANTIME, we won a huge battle with the school district on Summer programming for Nateman. The school district seems to think that it's acceptable to turn special needs kids away for a 12 week summer break and expect the kids to pick up where they left off in the Fall. Excuse me? I don't think so. Not on my watch. SO, after months of proving my case, they eventually rolled over (even if it was to SHUT ME UP-ha!) and authorized a private autism school placement for Nate (4 days a week) with private speech therapy sessions right at his new school. HOT DOG. :) I am a happy camper. It KILLS me to know the other kiddos in Nate's similar programming in the district won't be getting this. I wish I could LEAD THE WAY- and show them how we could get SO MUCH more for our kids if we just stand together....but that's not the case. Most parents here are hands off..and the ones that aren't are so damn scared of the district pulling their child's services that they don't share ANYTHING. Makes me sick. I know damn well I won my case because Nate's mom screamed the loudest. Unfortunately the end justifies the means. CASE CLOSED. (now I will go rest my voice for my next school battle..)  

In other news, Aaron and I decided to take our kiddos to the movies this weekend. We took Nate and Neve to see the Wiggles movie and it was a lot of fun. Nate couldn't contain his cheers and stimmed happily for most of the movie. Neve sat in her seat like a champ, giving me hope for some alternative Summer fun. I brought some popcorn containers from home and they both munched on dried apples. SUCCESS!

Where's MY Dora sticker?

I was so angry last Tuesday I lost my cool. Sometimes it is all just too much and I just want to scream. This isn't what I signed up for!! BUT, it's what I got.

I had my follow up appointment with Children's Hospital to discuss my Fragile X test results. I met with the geneticist that proceeded to explain to me the various levels of Fragile X, blah, blah, blah...yep, already read up on that- let's move past the basics. He explained that I, being a 51, was in the "gray zone". the zone ranges from 40-60. Nothing below a 58 has ever been shown to mutate in one generation to a full mutation( 200+). Well that is wonderful news...although we are FAR from in the clear. He then explained that Neve had the same 50/50 chance of inheriting either my prefectly fine "X", or the Fragile X. IF she inherited the Fragile X, it would affect her the same way it does me. She is at high risk for Premature Ovarian Failure and all the other SWAG that comes in our Fragile X bag..but it has a HUGE impact on her family planning. Neve's "number" would ALWAYS be a greater number than mine, as it will mutate. Since I am a 51, that could mean she is a 52 (making her a gray zone "carrier" as well) or it could have mutated to between 51 and 200, making her  full fledged carrier and then HER children would have a 50/50 chance of being the full mutation (which includes all levels of disabilities and mental retardation).

Headache inducing, I know. So I just took it all in and said. "ok, so we now test Neve."..and doc pipes in.."Well, that's not our recommendation."    Um, excuse me? Are you insane? Of course we test Neve. It's a blood test that could rule this out for my daughter. "Well, we wouldn't order the testing until she is of reproductive age and can further understand what all of this means.."  Um, I don't think so. I am Neve's guardian and therfore make ALL of her decisions. ...and reproductive age is like, 12, so once again, I am still in charge of ALL of the decisions relating to my minor daughter and her care. Then the genetic counselor pipes in with "Honey, some people just don't want to know what could happen."

OMG, I did everything I could to stop myself from punching her directly in the face (and yes, I would have knocked her out clean ). First of all, stop speaking down to me. Second, are you f'n kidding me? I spent 30+ years of life NOT KNOWING a damn thing about my medical history and I was powerless to obtain such information. I will ALWAYS find out ANY and ALL information. Thank you for educating me on the medical part of this...but deciding whether or not to KNOW is a moral choice that is OURS to make for our daughter. NOT YOURS. How dare you suggest I SIT on this knowledge for 10+ years when we could potentially rule this out entirely tomorrow. It isn't something that she MAY or MAY NOT develop in time..she either HAS IT right now, or she DOESN'T. It's as simple as ordering a blood test.

I told him this meeting was over and I would like to be referred to another geneticist for a second opinion. With a smug look on his face he told me that "..everyone here would say the same thing...but I will ask around and call you."  You pompous ass.

I left and sat in my car, hysterical, and called my sister Lana. I am sure she thinks I am certifiably insane, but that's just life. I have too much on my plate and it overflows....but thank you, Lana, for listening.

I made calls to Neve's pediatrician to obtain a referral for a second opinion at Clevelend Clinic. I also made a call to NATE'S biomed (DAN!) doctor and explained what had happened. He was appalled. He said he would gladly order the testing. My insurance will not pick up the bill, but who the hell cares at this point.

So, last Saturday, Aaron took Miss Neve to the lab for her blood draw. Some tears were shed, and all was made better by a Dora sticker.

Now we are back to waiting. In the meantime, I filed a formal complaint with the head of the genetics department at Children's Hospital.

...easy as 1-2-3!

Go, Nate, Go! This kid works so dang hard...love you T!

Make an on-line slide show at www.OneTrueMedia.com

Area 51

51. That's my number. I am , indeed, a carrier of Fragile X. (insert extremely heavy sigh here..) SO- what the heck does that mean for ME?(TELL HER WHAT SHE HAS WON!!) WELL, a couple things. It puts me in the high risk category for Premature Ovarian Failure (yippee!) including early menopause (double yippee!). ..and then, wait- it gets better! I am at an elevated risk for generalized brain atrophy and cognitive decline (FXTAS). FAN-FLIPPIN -TASTIC!

Ok, all kidding aside, I am scared to death. I am so guilt ridden by the chance that I passed this on to my daughter, it is eating me alive. So here is how it works. I am a carrier- that is now established. The odds are 50/50 if I passed it on to Neve. She could have gotten X-a, my normal X, and everything skipped her...OR she could have gotten X-b, my Fragile X. If she got my normal X we are done. This is no chance of her passing it on recessively or anything like that. BUT, if she got my Fragile X, it isn't going to be good news. Her repeat number will ALWAYS be higher than her mother's number because it will mutate. It is just a matter of how much. My sister's number is below 100 and both of her daughter's numbers mutated to beyond 250.

Now the WHAT-IFS and HOWS start--
WHAT IF Neve does have Fragile X? WHAT IF her disablities start to show? HOW do you tell your daughter the odds are stacked against her and she shouldn't have biological children- the risk is too great? WHAT IF gene therapy hasn't progressed enough by the time Neve starts a family(If we are SO LUCKY as to even have grandchildren)?

Nate's test results stand. He inherited my "normal" X. he is not affected by Fragile X. His Autism is not linked to Fragile X. My biological family is obviously tied by another genetic link to disabilities in addition to Fragile X. The fact that I have numerous nieces and nephews with disabilities and Autism is not a coincidence..in Nate's case, it just isn't Fragile X....

My follow-up appointment is Tuesday then Neve's testing will follow shortly after. I don't know how much more I can put on my plate..haven't I been given enough? someone? anyone? Isn't SOMEONE looking out for me??

The X Factor

Fragile X.

This is a word that came into our lives a little over 2 years ago....before that, I had never heard of it. Backtrack to 2007/20008- Nate's formal Autism diagnosis came through Children's Hospital Autism Center here in Columbus and it included a full set of neorological tests as well as genetic testing.. and the genetic testing that was done was to "rule out" Fragile X.

Fragile X syndrome is the most common known cause of mental retardation and developmental disabilities. A change or mutation in a gene on the X chromosome causes the fragile X. It is inherited and can mutate through subsequent generations. Aaron does not have a history of developmental disorders or Fragile X, and I am adopted and had ZERO medical history (although I, myself, do not have a devlopmental disorder of any kind).

So what the hell does this have to do with Nate? Nate has Autism- that is already established. Fragile X is the most common known genetic link to Autism. For 2-6% of kids with Autism, Fragile X is the contributing factor. 1/3 of kids with Fragile X have Autism. So basically that means that this could be a CAUSE for Nate's Autism..well, amen if we can find a cause becasue there isn't much hope in the "Why the hell did this happen to Nate?" department.

Nate's neurologist came back to us saying his test results were "normal" and Fragile X was not a factor. So that was that, case closed.

...but then something came to light. After 30+ years, I have come in contact with my biological family (which is a whole other CRAZY BUT WONDERFUL story for another day) and in the blink of an eye, Fragile X came back into our lives. My mother is a "carrier", my sisters are "carriers" and my nieces and nephews have disabilities ranging from small delays to severe Autism. Lovely. NOT the kind of news you exactly hope to hear. I AM, though,  forever thankful though for my amazing sister, Lana, who has brought me into her world of knowledge and is helping me navigate through all of this. I would NEVER have reconsidered ANY of this if I had not found her. Children's had "ruled it out" and I was never even tested, only Nate.

So then we catch up to today. Aaron and I are worried. We are done with OUR family planning as we are not having any more children biologically- that ship has sailed...but what about Neve??!? Neve currently shows NO signs of developmental delays, actually quite the opposite, but if she chooses to have children someday, this is a HUGE factor.

I see your true colors shining through.....

Nate- you are amazing, my boy. He has been receptively identifying colors for over a year now (color cards being set out on front of him and he can hand over the correct color to you when asked) and he has also been verbalizing the color names through his picture books--BUT this is really the first time he is generalizing the skills with objects in his environment (our motor room) AND he is not saying "ball", he is saying the color!! Woo-Hoo! Go, Nate, Go!

Under Attack...

This morning was dive #35 followed by dive #36 this evening. Nothing. Well, I shouldn't say NOTHING, but nothing clear and noticable right away....And we knew NOT to get our hopes up and have tunnel vision for one area of miraculous improvement, but we hoped anyway. Wouldn't you?
Nate's tummy is noticeably less distended- which is his yeast getting back under control...so YAY! in that department.Other than that it is hard to directly attribute any of his "new" tricks to HBOT. I wish I could. I really, really, wish I could.
SO, for now, it is down to our last 2 days of dives for this round and then there will be some decisions to make in regards to how we should continue with this therapy..or at all.
These pictures are from today..taken inside the HBOT...and it seemed that we were under attack from a small child that liked to press her little piggy nose up against the window. :)

"NATE! ARE YOU IN THERE?! IT'S ME, NEVE!!"

We are on dive #26 for HBOT...and well, nothing to report. :( I wish I could jump on here and gush and gush about change, but that's not the case..yet. BUT, no seizures (thank you!!!) so that is a victory in itself. We are up to an oxygen level of 10LPM, every time...and he uses the mask inside the HBOT to deliver the oxygen directly to his face rather than just the tube in the side of the rocket.

Nate and Neve have both been hit this week with the cough, fever, runny nose loveliness, so we had to take a 2 day break from HBOT. We seem to be on the upswing though so we will continue our rocket ship missions this week. We have a little over a week left for this first round of dives so I hope we can go hard core this week and make it count.

I always think it's so cute when Nate feeds Neve. She always wants his lima beans, so I tell him to "share with Neve". he thinks this means he has to physically feed her one by one, which is just so damn cute. :)