This Crazy Life

Life has really gotten the best of me lately. Needless to say I have been terribly neglectful in visiting other's blogs and even more neglectful in updating my own blog. There has been so much going on that I don't even know where to start.

Noah's daddy was admitted to the hospital on Nov. 29th. He has an autoimmune disease, and he let things get a little out of hand. He was able to come home on Dec. 6th, which was also Noah's 4th birthday.

Noah finally turns 4!!

Unfortunately, our neighbor's house caught fire and burned down on the same day. Luckily, she was at work and her beloved dog made it out fine. Unfortunately, her three beloved cats did not. So we did not have much of a birthday celebration. Noah opened his presents and took a treat to school for his friends, but other than that it was pretty much a blah kind of day.

Now that he is 4, Noah thinks he is a big boy and we have taken full advantage of the situation to really push the potty training  issue. It's still hit and miss, but it is slowly improving.

He got his Wii!
Unfortunately, he's having some trouble figuring it out and hasn't touched it much since he opened it!

Our town also suffered a real tragedy on December 9th. I live in a fairly small town with a population of about 13,000. Everyone either knows or knows of everyone else. An acquaintance that I graduated from hight school with lost 3 of her children in a house fire. Our whole community was really rocked by the loss of three little ones. They were only 7, 6, and 3 years old. Today was the funeral and the whole community is still in mourning. 

Today was also Noah's last day of school until after the holidays and they had the Christmas party and program. This was really fun. Noah had a really good time. He actually participated in the program. This was no easy accomplishment. After the program was finished his aide let me know how close Noah came to sitting out in the hall during the program. Apparently he was having some problems during the rehearsal earlier. Thankfully, he worked through his sensory stuff with his aide and was able to participate. Here's a little video. Sorry about the quality, but my camera isn't the greatest when you zoom in.

He really had fun. And did I mention how much I love his aide this year? She is great with him!



After the program we went back to the classroom to do a craft and see a special visitor. Noah is finally "getting" the whole Santa thing this year.

He even sat on Santa's lap and told him what he wanted for Christmas. I can't believe how much he has grown over the last year.

Noah also had his annual IEP while Dave was in the hospital, but that's a whole other post! 

Happy Thanksgiving

Today is Thanksgiving and I have so many things in my life to be thankful for. Instead of sitting here and typing up a long list of the usual things that people are thankful for, I will sum it all up in one little video.

Happy Thanksgiving from my family to yours!

Halloween Rewind

I sound like a scratched record when I say that things have been crazy busy around here! I've been stressing over Noah's upcoming IEP and spending way too much time analyzing every piece of information that I have to prepare. I'm not sure why I am stressing this one so much, but I am. Anyways, we had a wonderful Halloween this year. We went trick or treating three times and I think Noah actually said, "trick or treat" exactly once. LOL I also helped out in his classroom during their Halloween party. Here are a few pictures from Halloween week.



This is Noah at our city's Mardi Gras parade. Noah likes parade for about the first 10 minutes, then he is ready to go home.



Classroom Halloween party! He had a blast!

Noah loved his cupcake and was the first one to finish!

The class planted "magic seeds" the day before and went outside to see if they grew. Noah was slightly taken aback when he realized that the pumpkins were not in the exact location that they planted the seeds in. It took some fancy footwork by his aide and I to convince him that the seeds must have gotten blown by the wind to a different spot. (Have I ever mentioned that my kid is a perfectionist that forgets nothing?)

The seeds were originally planted where Noah is.

I found a magic pumpkin!!

Then they decorated their pumpkins.

Getting ready for Trick or Treat!

Trick or Treating!

Noah Story: I had a blast helping out in his classroom! I was blessed to witness one of the many milestones this year. After the pumpkin hunt and snack, Noah's teacher decided that the kids needed to release some energy. She played some music and had the kids stand up and dance. Noah joined in! Now for those that don't know, last year Noah would not have been able to handle this. He would have needed headphones or even had to leave the room. And there was no way he would have participated with his peers. This year he is actively participating! And no headphones! I am so proud of him. Here's a video. It's a little long, but it sure is cute!

(((editor's note: I can't seem to get the video loaded yet, but I will try again tomorrow!)))

Two Years

Today marks two years since Noah's autism diagnosis. Two years ago today we were in a strange city listening to a doctor we had never met tell us that our beautiful, sweet, smart, soon-to-be two-year-old had autism. The doctor that day told us that there really wasn't much that could be done to help him. Her advice, "Keep up the speech and occupational therapy, keep sending him to Early Intervention classes, and come back in a year." Oh, she also ordered a CT scan because of his hypotonia and referred us to the feeding clinic. She spoke with us about communication devices and the possibility that Noah may never develop language. Everything was so negative and saddening. The doctor that we saw that day left us with little hope for any improvement. I felt as if she had stolen Noah's future and all the dreams I had for him. She couldn't have been more wrong.


Since that day Noah has blossomed. His last speech evaluation showed his receptive language to be "within functional limits" and his expressive language to be "mildly delayed". I'm not saying that his language is normal, not by any means, but he is doing far better than anyone could have hoped. He still faces numerous challenges, but he has had so many victories. He still has some echolalia, he isn't potty-trained, he can't dress himself, and he can't carry on a conversation. But he can count to 20, say his nightly prayers, give affection, make you laugh, name all the Transformers, and beat all the Decepticons on his Transformers video games.


I spent a long time in denial. I spent a long time mourning the kid that Noah could have been if not for autism. I even spent some time questioning why God would do this to me. Now I spend most of my time marveling at the kid that Noah has become and thanking God for blessing me with this amazing child.

School and Seizures

I can't believe that it has been over two months since my last post! I am so sorry. I am not joking when I say that life has really been crazy-hectic lately. There has been so much going on that I don't even know where to begin this post. Guess I'll just start with two of the more important topics: school and seizures.

Noah started school on August 30th .

So far he's doing really well. We had a small issue on the first day because he wanted to ride the bus, and he wasn't supposed to start riding until the second day. Of course, this led to a meltdown when I dropped him off at school. His aide had to pry him out of my arms and carry him to his seat. I really hate to see him get so upset.

On the second day, all went fine.

He was so excited to finally ride the bus.

He has a new 1:1 aide this year, and we all love her. So far, she is great. Noah doesn't want anyone else to change his pull-up or help brush his teeth. Every day when I go to pick him up, he is either playing with her or being held by her. She really seems to "get" Noah and his little quirks. Since school started, we have only received 5 - 6 behavior reports and 4 of them were on the same day. This is still better than last year when we received 5 - 6 every day. His teacher is the same teacher he had last year and she has also noticed that he is very different than last year. We think that part of the dramatic change can be attributed to having his seizures under control. Speaking of which....

We received the final MRI results from his neurologist. Considering that 70% of seizures have either a genetic or no identifiable cause, we were kind of surprised to find out that there is an identifiable cause for his seizures. The MRI showed that Noah's left (I think, but can't remember) hippocampus is smaller than normal and he has mesial temporal sclerosis. In layman's terms this simply means that part of Noah's hippocampus has been replaced by scar tissue. This is where his seizures are originating from. This probably happened before he was born, but we're not sure. He has done exceptionally well on the anti-seizure medication and we really haven't noticed any seizures since he started the medication.

I promise another post really soon. If not, someone hit me over the head!

Friday's Freeway Fiasco

Friday morning my alarm went off at 4:30. I rolled over and thought to myself, “This is WAY too early to be crawling out of bed.” This thought was especially true when combined with the fact that I hadn’t crawled into bed until after midnight the night before. You see, Noah’s pre-MRI instructions included keeping him up 2 hours past his normal bedtime. Since his normal bedtime is normally around 10pm, that left us all up until midnight. Definitely not cool when you have to be up at 4:30 the next day. I did manage to get myself out of bed and ready for the short 60 mile trip to Nationwide Children’s in time to wake Noah up at 6:00 (his instructions also included waking him up 2 hours earlier than his normal time as well). I’m always happily surprised at how well Noah handles waking up early and this morning was no exception. He woke up with a smile, asked me where we were going, and let me dress him. His only request was that Nanook and his blankie come along. Gladly! We managed to leave the house around 6:30, which was my goal. We were going along just fine and had actually made it to Columbus before disaster struck.


We were on 270E when the car gave a shudder. Hmmmm….that was strange. A mile or so later and we felt another shimmy. Uh oh, this can’t be good. We pulled over (on 270E, yikes!) and let the car rest for a minute. We started it up again and that’s when Dave realized that he had little to no power. Now we were in big trouble. We managed to coax the car to the nearest exit, which luckily enough led us to an Aladdin Shriner’s Temple. We parked the car and noticed the smoke coming out from under the hood. It was nearly 8:00 and we really didn’t want to miss Noah’s MRI since he had gone all night and morning with no food and drink, so we called a taxi to take us to the hospital.

Within ten minutes the taxi arrived and we were on our way. Twenty minutes and $30 later we were at Children’s. We found our way to the MRI department, filled out all the paperwork, and waited to be called back. Noah was so good! He was patient and didn't whine about being hungry or thirsty. The nurse put numbing cream on his hands and arms, asked lots of questions, and took Noah's vitals. Then we watched Spongebob until it was time to go back for his test. The only time that Noah got upset was when they started his IV. He cried some and fought the medicine, but in a matter of a few minutes Noah was out. Half an hour later, he was back in his bed sleeping off the anesthesia. He did really well.

While Noah was in recovery, David called my dad to come pick us up. My dad arrived around 11 and Noah was released around noon. We made our way back to the car and David called a tow truck to tow our car the 60 miles home. David rode with the tow truck and Noah and I rode with my dad. Noah slept all the way home. When the mechanic checked the car over, he discovered that the coil pack was cracked and the computer was shorted out. We just spent $200 on the transmission and now another $500 on the coil pack and computer. Hopefully, we will have the car back tomorrow. It was a very eventful day. We should get the results of the MRI in a few days.

Neurology

Since my last update, there has been a few things going on. Way back in April right after Noah returned to school following his surgery, Noah began having some strange behaviors. In October of last year, we noticed some similar behaviors and Noah underwent an EEG to rule out seizures. Because the EEG in October was normal, I thought nothing of the return of the staring spells. I figured he was just out of his routine and having a hard time readjusting. When his teacher, aide and speech therapist all expressed concern over the staring and unresponsiveness, we decided it might be a good idea to have another EEG to rule out anything new.  On May 18 we had a repeat EEG done. This time was a little different. Noah was far more sleep deprived and actually slept for the sleeping part of the test. We set up an appointment with neurology for August 31 on the assumption (You'd think that I would know better than to assume anything. What's that old saying about assuming? LOL) that the EEG was normal. A week later we received the results from Noah's pediatrician, who immediately got in touch with Children's and rescheduled Noah's appointment for a sooner date.

On July 2, Noah had his appointment with neurology at Nationwide Children's Hospital. Because they were booked, we did not see an actual neurologist and instead saw a CNP. She was awesome and treated Noah so well. She noticed his hypotonia immediately. She could also tell that he was (and still is at times) a toe walker. She asked SO many questions. She even held Noah up to the window so that he could see all the construction work going on outside. After her exam and talking with us, she consulted with the neurologist to get her opinion. The consensus is that Noah is having seizures. He was diagnosed with complex partial seizures and we began medication a short time later. She also set Noah up for an MRI at the end of next month to rule out any possible cause (although the odds of that are pretty slim).

I think that the seizure diagnosis hit me just as hard or harder than the autism diagnosis. I had a half-brother that was an epileptic. He passed away in his early 20's due to complications. A few days after Noah's diagnosis, I got a phone call from the Epilepsy Foundation. She left a message on my answering machine. I haven't called her back yet. I will. Sometime. I'm coming to grips with the diagnosis now, but it's still hard. I know he will be fine. He's such a great kid. He's dong well on the medication. It took him awhile to adjust and we are increasing the dosage VERY slowly because he became excessively drowsy when he started. Sorry this post is so long, but I had to get some stuff off my chest.

Zoo

On July 3rd, the Columbus Zoo and Aquarium had a special day for current military personnel, veterans and their families. Because Noah's daddy is an Army veteran, we decided to take advantage of the free admission and catered lunch that was being offered. This was Noah's first visit to the zoo and he really enjoyed it. Here are a few more pictures from the day of fun.

Noah hamming it up for the camera!

Noah and Daddy feeding nectar to the lorikeets.

This was Noah's favorite ride by far! He went on it numerous times!



he really wanted to ride was the roller coaster in the background!

The elephant ride wasn't too bad once he learned to pull the handle to make the elephant go higher.

Noah loves trains, but this one was a little too small and slow for him.

Noah has always loved carousels. No matter where we go, this is the first thing he wants to ride.

Although it was terribly hot, we had a really nice time. Noah really loved the komodo dragon. He said it looked like a dinosaur. It was pretty funny. Every animal (and I mean EVERY) was, in Noah's words, "soooo cute". This statement covered everything from kangaroos to snakes. It was quite funny to come upon a crowd of people looking at a wart hog with their faces scrunched up in disgust and hear your kid exclaim, "Awww, he's sooooo cute!" Never a dull moment!

We can't wait until our next trip to the zoo. Although, considering it's a 60 mile drive and this trip cost us almost $100, it may not be until August. I'll post about the neurology appointment next time. I will leave you with a video of Noah feeding the lorikeets.

OT Graduation and Coming (Short) Trip

Life has been so hectic since school finished up in June. Why does it seem like life gets MORE hectic when school lets out? Anyways, Noah has been keeping busy with the usual things. Yesterday, Noah attended his regular OT and PT sessions. He did really well. During his OT session, his therapist, Noelle, asked me how I would feel about her graduating Noah out of OT. I wasn't quite ready for that, but I was okay with it. I'm really proud of how far Noah has come. He he has worked really hard and made so many gains. He began OT back in June 2008, so I guess that it is pretty fitting that he finish 2 years later. Of course, he still has sensory issues and he is still delayed in self-help and adaptive skill areas, but not to the degree that would require weekly OT sessions. He may need to attend "tune-up" sessions every once in awhile, but we don't expect him to require anymore extensive OT. We'll really miss the sessions with Noelle, but since his PT is in the same building we will still see her on a pretty regular basis.

We also found out this week that his SLP will be taking maternity leave sometime in the next few weeks and will not be back until the fall sometime. Because she has no one to take over for her, we made the collective decision to take a break from speech while she is on leave and return in the fall. A year ago, this would have freaked me out! Now, I realize that Noah is doing really well and taking a short break isn't that big of a deal. Miss Emily, his SLP, is making a packet of thing or us to work on at home with him. We'll see how things go. If he seems to struggle, we can always take him to another SLP (pretty easy considering our neighbor is one!).

This Friday we will be making the 60 mile trip to the closest Children's hopital to see a neurologist. Some of you may remember that back in October Noah had an EEG because of some staring spells that he was having. That EEG came back normal and we figured it was just some weird thing that he did. Well, after he had his surger in April and returned to school, his teacher and aide mentioned that they had noticed the same staring spells that we had noticed back in October. Noah's SLP also mentioned that she had noticed the same thing, so we decided to have a second EEG done in May. This EEG came back abnormal, so we have now have an appointment with a neurologist to see what it means exactly.

Since Friday is gonna be a somewhat stressful day, we decided that it would be nice to take a little trip to the Columbus Zoo on Saturday to relax. It's Military Family Free Day, so we won't have to pay to get in! That means we can spend more on souvenirs and food! Yay! Noah hasn't been to the zoo, so this should be fun. So it looks like the next few days will be crazy, again! Hope everyone enjoys there weekend ahead.

So Proud and Noah Funny

Noah had his preschool program and stepping up ceremony last week. Everyone involved with Noah was concerned that he would not do well during the program because he has been very unpredictable in situations that involve lots of kids and music. One day he will sing along and have a good old time, but the next day he may cover his ears, scream like a banshee and/or lash out at himself or others. I am proud to say that on this day he did amazing! He sat in his seat (with his aide holding his vibrating mouse standing behind him), sang, did all the cute little hand motions and even went up to the front of the stage to get his certificate. I was one proud mama with tears rolling down my cheeks as he ran to me after receiving his certificate.

Now on to the funny part. One of Noah's favorite songs from the program is "My Mother is a Baker". He has been singing it quite a bit lately, only his version is a little bit different from the original. Here is the original first three verses (in case you are not familiar with the song):

The original version:

"My mother is a baker, a baker, a baker.
My mother is a baker. She always goes like this. Yum. Yum.

My father is a trash man, a trash man, a trash man.
My father is a trash man. He always goes like this. Pee Yew.

My sister is a singer, a singer, a singer.
My sister is a singer. She always goes like this. La ta de da, and a toodley doo."

Noah's version:

"My mother is a maker, a maker, a maker.
My mother is a maker. She always goes like this. Yum Yum.

My father is a trash can, a trash can, a trash can.
My father is a trash can. He always goes like this. Pee Yew.

My sister is a stinker, a stinker, a stinker.
My sister is a stinker. She always goes like this. La ta de da, and a toodley doo."

Let me just say that I am REALLY glad that Noah doesn't have a sister and I should probably quit calling him a stinker so much! Did I mention that he sings this song at the top of his lungs for the whole world to hear? Yeah. That's my boy!

As you can see, they sat Noah in the back row just in case he had to be hustled away. The wonderful lady in the purple shirt is Noah's aide, Miss A. She was awesome with him this year. As far as I know she will be back with him again next year.

Sorry for the Silence

First, I just want to say, "thank you" for all the wonderful advice I received after my last post. It is so comforting to be able to post how I am feeling and not be accused of being a crappy mother.

Second, I wanna wish a VERY belated Happy Mother's Day to all the cool mamas out there! Hope that you all had wonderful Mother's Days with your munchkin.

Third, I want to apologize for my lack of postin as of late. I have been somewhat keeping up with everyone else's blogs, just haven't been able to find the energy to comment or post on my own. I'm not sure what is up. I've just been in a kind of funk lately. Things have been a bit on the rough side around here lately. Noah just hasn't been himself the last couple of weeks. I'm not sure what is going on, but he has some testing coming up on Tuesday. I am hoping that he is just having a really hard time readjusting to his normal routine and not something more serious.

I promise to post again soon, but right now I am just really lacking the spunk to do so. I will keep up with everyone else, though. Thanks for all the support and understanding!

One Week

I love this picture, although it makes him look so grown up! Where is my little munchkin?



It's been exactly one week since Noah's surgery. Thankfully, he has recovered quite nicely. The first day was a little rough and we spent the whole first day watching Pixar movies. I think he watched Wall-E at least four times! The first night we lovingly refer to as, "The Night from Hades". Medicine was refused, medicine was forced, medicine came right back up. Yuck! After that first day and night, he seemed to improve quickly. He was eating mashed potatoes and playing video games by the second day. This weekend he played some with the girls next door and we had a playdate yesterday with one of his friends from Early Intervention. He hasn't really complained too much. He did say he was sick today and when I asked him if his throat hurt, he said yes. I gave him some pain medicine and he has done fine since.

Mama, on the other hand, is going a little crazy. :)

I am really looking forward to his returning to school next Monday. I love Noah to pieces, but I am really close to reaching my breaking point. I think I am due for a few hours away from my munchkin. I know that I am truly blessed that Noah is as verbal and high functioning as he is, but sometimes the incessant chatter and repetitiveness is overwhelming. He's also developed some vocal stims, mainly when he is playing video games. And I am so sick of Transformers I could just scream. I swear if Noah askes me to "make Bumblebee a robot" or "make Optimus Prime a truck" one more time, I'm leaving home! LOL

Of course, I kid (sort of). Actually, he's been really good considering all that he has gone through. He's been a little whinier than normal and more picky when it comes to eating, but he's really done well. I think that I am just out of practice. I am not used to having him 24/7 since he started school. I guess this is good practice for this summer, as I have major doubts that the district will offer summer services.

Speaking of this summer, Noah's dad and I are trying to find some activities for Noah to be involved in. His OT thinks that Noah would benefit from some social activities. I am all for social activities. The only problem is finding some that are geared toward three-year-olds. All the YMCA activities are for four years and up. I'm sure we will do story time at the local library and probably Families in the Park if it is offered. Our support group is planning some trips to the zoo and things like that. So we have a few ideas, but nothing really scheduled. Anybody have any other ideas?

Tonsils, Adenoids, and Ear Tubes. Oh My!

We arrived at registration at 7:00 am. Noah was wide awake and studying everything. He was really cute. We made our way to his room, where the nurse had us change him into a hospital gown. Noah was being really cooperative and allowed the nurse to check his vitals without any complaints. He did, however, repeat "What's that make?" about 50 times while pointing to various objects around the room. The nurse was very patient with him and tried to answer all his "questions". We settled in to watch Mickey Mouse Clubhouse after the nurse gave him his "loopy" medicine (versed, demerol and atropine for those medical types). He never fell asleep, but did become somewhat groggy.

When it was time for his surgery I carried Noah to the holding area while Daddy followed. Within a few minutes, after answering a bazillion questions, they loaded Noah onto a gurney and took him to the operating room. He never fussed as I gave him a bunch of kisses and he was led away. Daddy and I headed to the cafeteria to get a drink and something to eat. Within 45 minutes the ENT called and said that Noah had done great and was in recovery.

We headed back to Noah's room. About 40 minutes later, the nurse from recovery brought Noah back to his room. He was sitting up in the crib they used to transport him and asking, "Where's Mama?" It was music to my ears! I rocked him and fed him juice with a syringe for a couple of hours. When he finally woke up completely, he decided to watch some cartoons and play with his cars. He was drinking really well and everything was honky dorey. We encountered a small problem when Noah had some potty (or lack of) issues, but that was resolved. At 1:30pm Noah got to take his first ride in a wheelchair to the car. He was ecstatic about the wheelchair ride!

All in all, the day went really well. I'll leave you with a couple of pics from the day of surgery.

Right after his surgery. He was still able to give me a little smile. He is a little swollen, though. (Notice the Transformer's pillow. It's his fave right now.)

A couple hours after surgery. He and Woof Woof are relaxing in the rocker. (Did I mention he's really into Transformers right now?)

Tonsils and Tubies

It really has been a hectic, stressful month. Here are a few of the highlights (which I will probably elaborate more on later):

1. We had our first parent/teacher conference for Noah.
2. Noah had his first set of school pictures taken.
3. We started OT/PT again.
4. We adopted a new dog.
5. We got lost on our way to a movie in Columbus. (No laughing allowed! It was traumatizing!)
6. We found out that Noah needs to see a specialist for his eyes and may require surgery.
7. We found out that Noah WILL have surgery.....tomorrow! (But NOT for his eyes.)

This mommy is stressing something terrible today. After four months of nearly endless ear infections, increased snoring, lots of restless sleep and a nasty bout of tonsillits, Noah's ENT decided that some action needed to be taken to help Noah feel better. As much as I didn't want to admit it, I had to agree with him. So, tomorrow morning Noah will be going in for surgery to have his tonsils removed and ear tubes placed. We have tried to prepare Noah as best we can. (Maybe somebody should have prepared mommy a little better!) To help him understand what is going to happen, his speech therapist at school and I made him a social story . We have been reading it to him a few times daily. At first Noah really seemed to like the story, but now when I bring it out to read to him he says, "No story. Don't wanna read that story." Maybe we have read it to him too much? LOL

Anyway, positive thoughts and prayers tomorrow for my munchkin would be greatly appreciated. (His mama could probably use a few, too!)

Happy Easter!

Sorry for being absent for so long, but life has been more than hectic around here lately. I am so far behind in my blogging that it would take me forever to catch up, but I had to at least send out a Happy Easter to all my friends! I hope that everyone had a happy Easter! I will try to post again later this week with all the latest happenings in Noah's world.

The Pick-Up

My watch reads 2:23 as I pull into the half-empty parking lot of the local County Board of Developmental Disabilities. I’m early. I brace myself and, holding my breath, head into the building. Pick-ups are always nerve wracking. As I pass the office, the secretary calls out, “Hi Michelle!” I smile and return her greeting. She must sense my anxiety because she looks at me and says, “I didn’t hear anything today.” I heave a huge sigh of relief. “That’s great,” I say (and looking up silently whisper “Thank you”).

I make my way into the area that houses the classrooms and play areas. As I enter the play center, I am greeted by the sight of 14 little ones lined up in a neat little row dressed in their cute little hats and coats. They have just come in from playing outside and are waiting their turn at the drinking fountain. A quick glimpse tells me that, yes, this is Noah’s class. I scan the heads of the little ones, looking for that unmistakable red Lightning McQueen hat that Noah wears to school EVERY day, but I can’t seem to find it…..at first.

My eyes come to rest on Noah’s aide. She turns to her right, and there off to the side of the group, is my sweet little boy. I feel tears start to well up. He is standing alone, halfway into the speech therapist’s office,. He is staring fixatedly at the fluorescent light in the ceiling. He doesn’t even seem to notice that I have entered the room, but his little “friends” have. Almost in unison, cries of “Noah! Your mommy’s here! Noah!” rise up from the line of 3-year-olds. Still Noah doesn’t seem to notice. Finally, his aide kneels down and touches Noah on the shoulder. She speaks to him and after a few seconds he looks up. “Mama! You’re here!” he cries and comes running to me. I pick him up and squeeze him for all that I am worth. He pulls away, looks at me with those beautiful eyes and says, “I need to go home.” As new tears spring to my eyes, I reply “Okay, Noni. We’re going home.”

Whining

Noah's sleeping. The house is quiet. I should be napping with him. The last two weeks have been a roller coaster ride. Up, down, around. In, out, and back again. Do I sound bitter, or what? And it really hasn't been that bad. It's just.....been.

Noah had two REALLY good weeks at school. We had two reports. Minor things really. Last week, he got the "quiet as a mouse" award. Huh? My kid? Big surprise there. On Thursday, less than 20 minutes after dropping him off at school, we got a call from the school nurse. "Noah has a fever of 100.2 and he's really whiny. He just wants to be held and rocked. Could you come get him?" She also went on to tell us how good he is about taking his medicine for her at lunch (he takes 3 meds at lunch). She said that if she is late getting there, he is waiting on her. Pretty cute, but pretty sad too. When I picked him up, he was grabbing his throat and saying his mouth hurt. He ran a fever of about 102 Thursday and Friday. On Friday night, his fever hit 104. Needless to say, we ended up in the ER. He has tonsillitis. Wonderful. He is doing better now. No fever yesterday or today. I'm just worried about all the antibiotics he has been on lately. Poor kid.

He has been on hiatus from PT and OT the last two weeks. Apparently he hit his limit of OT/PT visits for the year. His new year doesn't start until April 29th. I think we have everything worked out and he should be able to start back on Tuesday. It has been so sad to go to his speech appointments because we have to drive past his OT and PT building and Noah always cries and says, "I wanna go see Noelle. I want Noelle." He really loves his OT. He's even been asking about Miss Laurie, his PT. Can't wait to see his reaction when he sees Noelle again.

I know being sick and the change in routine and not feeling well is really getting to him. He is so cranky and irritable. He's been crying way more than usual and has been more aggressive toward himself and others. He's back to hitting himself or the dog or me when he is upset. He's also back to head-butting and head banging. I was so sure we had seen the last of those. I just want things to get back to our normal. I just want my little guy to be the happy kid I am used to having around.

We had a support group meeting on Monday. It was nice. I love those people. They are like a second family to me. This journey would be so much harder without the wonderful people that I have met online and through the support group, Thanks for being here.

Random Stuff

First I want to say thank you for all the wonderful advice on the toilet training topic. You are all great!

Noah has had an awesome week. His therapy sessions went better than I had expected. He even reached a few milestones.

Physical Therapy
Noah had PT last Tuesday and his therapist, Miss Laurie, finally got Noah to jump. With both feet off the ground at the same time! We all cheered (even Noah). He was so pleased with himself.

Occupational Therapy
On Friday we saw Noelle, his OT. I, once again, brought up the issue with him not walking outside when there is snow on the ground. She was already prepared. She and Noah took their shoes off and stuck their feet in bins of different things (rice, corn, beans). Noah actually seemed to enjoy it. Then, Noelle covered the floor in shaving cream and they walked in that. Noah LOVED this. I was really surprised because he is normally a neat freak. Then, she brought in a HUGE bin of snow from outside. Noah was a little hesitant, but eventually they made snowballs and snowmen. Finally, we all went outside and played in the snow! Noah actually didn't seem to mind it much. At least he didn't ask to be carried. So far, so good. (He does still want carried into school, but I think that is more of a separation issue.)

Speech Therapy
Noah saw Miss Emily on Friday, too. He did really well. We are still working on sequencing and wh-questions. Noah did something that surprised us, though. At the end of his sessions, Noah always wants to play with the bubbles (sound familiar?) and usually he gets rather upset when he has to put them away. Miss Emily always gives him a warning and says, "one more time and then we are all done". When she was done instead of crying, Noah looked at her and said, "We're all done. Time to go. " Neither of us could believe it! I was so proud of him!

School
School was closed all last week (and most of the week before) because of the snow, so I was kind of nervous about how he would handle going back after over a two-week hiatus. I shouldn't have worried. He did cry when I dropped him off Monday and had to be carried into his classroom, but when I picked him up his aide and teacher both said that he had a great day. On the way home, I was looking through his valentines with him and asking him, "do you like E? Do you play with N?" things like that. When I asked him, "Do you play with K?" Noah looked at me and said, "He beat Noah. He beat my back. He said sorry." Oh My!! This about floored me. Normally, Noah doesn't share anything about school. I can't believe how far he has come.

Yesterday was even better. When I picked him up his teacher told me that he had the best day so far! He even asked to go potty and used the toilet like everyone else. (He made somewhat of a mess, but who cares!) Everyone was so excited for him! He has went two days without any behavior reports being sent home. I think that's a record for him!

I was really worried when he first started that so many hours at school would be too much (he goes 5 1/2 hrs a day, 4 days a week), but he seems to be really thriving and making huge gains there. I miss him when he is at school, but I guess I have to do what is best for him. He just seems so little!

So, as you can see, this has been a really good week. Can't wait to see what the next week brings!

Tackling Toilet Training

Any advice on potty training would be GREATLY appreciated!

We decided to try potty training again. We tried potty training a few months back and Noah actually went a few days with no accidents. Then, he missed the toilet and that was it. He would have nothing to do with the potty. This time is proving much harder. We are trying the "nothing below the waist" method and let's just say that most of the morning has been spent cleaning the floors. I am honestly beginning to wonder if Noah even feels the urge to go because he seems to realize that he is going once he starts, but not before. Maybe I am going about this the wrong way. Noah is my first and this is new territory. Noah is already 3 and I am really feeling the pressure to potty train. Any tips?

Ramblings

I guess I am not doing a very good job of blogging like I should, but things have been somewhat drab around here. We have been fighting the winter blahs. Noah has yet another ear infection and a nasty winter cold. Antibiotics and breathing treatments have been making things much easier though. He didn’t manage to make it to school at all last week. Monday, Tuesday, and Wednesday were all snow days and then Thursday started with a fever. Noah (okay, maybe not Noah, more likely Mama) was really disappointed to miss his classroom Valentine’s Day party. Daddy took his invitations into his classmates, though. They were Cars valentines, of course. It was either Cars or Transformers. We decided on Cars. We missed physical therapy on Tuesday because of the weather. We also missed speech and occupational therapy on Friday, but that’s okay. Hopefully, we will make it there this week.

Sometimes Noah says the funniest things. One of my favorites from the past week is:

Me: I love you, Noah.
Noah: I love you, Mama.
Me: Silly boy.
Noah: Silly girl.

At least he’s beginning to understand gender! Now if I can just get him to quit calling every adult male “a Dad” and every adult female “a Mom”, I’ll be good to go!

Noah also makes up his own words. One pretty common one around our house is “scoove it”. Yep…it’s Noah-ish. It’s a combination of “scoot over” and “move it”. I love it!

We’ve been dealing with a few issues around here lately. One of them is definitely sensory-related, but the other two I am not so sure what those are about.

First, we’re back to fighting during baths. Noah is back to screaming bloody murder when his hair is being washed. No matter what I do or how gentle I am or how fun I try to make it, he has a fit. He had been doing really well, but now he’s having issues with that again. Maybe once he is over all the winter sickies, he will be back to being okay with it. Keeping my fingers crossed on that one.

Second, Noah absolutely refuses to set foot in the snow. Not sure what is up with that, but he seems to be absolutely terrified of walking in the snow. The only thing that we can guess is that Daddy fell on the ice a couple of weeks ago and now Noah is afraid of falling, too. Kind of puts a damper on taking him sledding, considering we’ve got like a foot of snow on the ground! Gonna have to work on this one, so that we can build a snowman and go sledding before winter is over.

Third, Noah has been having this weird obsession/control…not sure what it is. It is much more apparent at school, but I have seen it a few times at home. I received two notes sent home about it and was informed about it by his teacher a couple of weeks ago, as well. I’m not really sure how to explain it, but here are a couple examples.

Example 1: Noah was supposed to walk to the gym, but refused. The teacher’s aide carried him kicking and screaming to the gym. Once there, Noah beat on the gym doors wanting to go back to the classroom so that he could walk to the gym without being carried.

Example 2: Noah was asked to throw his lunch tray in the garbage. When he refused, his teacher walked him over to the garbage can and made him throw his tray away. Noah then wanted to dig his tray out of the garbage so that he could throw it away himself.

Isn’t that weird? Not sure what to make of this. If anybody has any ideas, let me know. I’m at a loss on this one. (Of course I’m also wondering where his 1:1 aide was during these incidents, since he wasn’t with her during any of them. What’s a 1:1 aide for?)

I’ve rambled far too long and need to get my Cars fanatic to turn off the movie and go to bed.

Back to School

Noah finally made it back to school today! No fever yesterday and none today. I am so glad that we appear to be over this nasty bug. His teacher and his aide both said that he had a really good day today, one of his best so far! I was really glad to hear that. I was worried that he would have a rough day after missing so many and getting out of his routine, but it appears that he did well. He did have one incident report becaus he threw himself on the floor in front of the door and cried because he wanted his "Mama". I'm not sure whether to cry or jump for joy! LOL Up until he started school, Noah never seemed to care whether I was around or not. Now he cries when I leave him at school. It's kind of nice to know that he does want me around.

Noah had a really cruddy day yesterday. Noah's pediatrican wanted him to have some bloodwork and a chest x-ray because he had been running a fever for so long. So we went to the hospital and Noah did really well for the x-ray. Poor baby had a horrible time when it came to getting his blood drawn. After trying both arms, they resorted to pricking two of his fingers and trying to get enough that way. It was really cute though. Noah kept saying, "I'm all done doctor". When they put the bandaid on his arm, Noah said "Oh, Thank You". It was so sweet. They were really nice to him and got a laugh out of how quickly he went from crying to laughing. They also gave him loads of stickers, a coloring book and a box of crayons.

Today has been much better. He seems really happy and has been playing. Tomorrow we have school and physical therapy. That should be fun!

Friday Fever

Today was supposed to be therapy day. Noah was scheduled for his usual speech, OT and PT. Unfortunately, the fever is persisting and we had to cancel all three for the second Friday in a row. Unless we keep him pumped full of Motrin and Tylenol, Noah's temperature hovers betwen 101 and 103. This has been going on for over a week. He has had one or two days without a fever and then the fever returns. Not sure what is going on. The fevers and ear pain are supposedly the result of mastoiditis. We are on our second round of antibiotic/steroid ear drops and our first round of oral antibiotics. I hope they do the trick soon because Noah looks and feels just plain miserable.

Noah playing video games and looking sick

Noah on TV and Feeling Better

A local news station airs an exclusive series called "The Autism Puzzle". The series features stories about children and adults living with autism and the resources available for people on the autism spectrum. The series was started by the sports anchor, whose two sons are both diagnosed with autism. A few weeks ago, he came and filmed our support group. He wanted to do a story about the wonderful woman who started it. Seriously, this woman is great and this support group is just a huge blessing. The story was very well done and he managed to film all of the kids that were present....including Noah! So here is Noah's television debut.

Noah missed school yesterday because of a fever of 102 and as he says it a "broken ear". We went to the pediatrician last week for the same reason, but he didn't really see anything wrong. Yesterday, his pediatrician decided that Noah probably has mastoiditis. That is why Noah's ear has been hurting so much without the pediatrician seeing any infection in the ear itself. He made it back to school today and did really well. He didn't even cry when I dropped him off. This makes 3 days without a single incident report!! Yippee!!

****UPDATE: 7:30 pm**** Okay, I spoke too soon. Noah just spiked a fever of 103.4.....jeesh!

The Last Year in Pictures!

Noah started wearing glasses in February.

First Easter Egg Hunt

Discovered a love of Blue Moo Cookie Dough Ice Cream

First Solo Amusement Park Ride!

First (and hopefully only) EEG!

Turned 3!

Now that 2010 is here, I will try to blog more!!

Testing Results

(This was originally posted on my MySpace blog back in April)

Okay, I think that I have finally come to terms with the results of Noah’s psychological testing results. I think that I have spent the last couple of months pretending that they were wrong or something, but I guess I just need to face the truth of what autism has done to my child. So, here are Noah’s results.

On the Mullen Scales of Early Learning – AGS Edition, Noah scored the following:

Visual Reception– 23 months (at or above age level)
This is very similar to an IQ type of test in that it measures cognitive and problem-solving abilities.

Fine Motor – 22 months (1 month behind)
Noah has been doing Occupational Therapy to help with this for about 6 months and this shows that it has helped tremendously.

Receptive Language – 17 months (6 months behind)
This measures how well Noah understands what is being said to him, follows directions, etc. This is AFTER almost 6 months of speech therapy. This one was a little disheartening.

Expressive Language – 16 months (7 months behind)
This measures how well Noah expresses himself through language. Again, this is AFTER 6 months of speech therapy. I was disappointed with this one as well.

Noah’s overall level of developmental functioning is considered to be borderline because he has age-appropriate visual perception, fine motor and problem-solving skills, but significant delays in receptive and expressive language.

One of the other tests, Scales of Independent Behavior, measured Noah’s overall level of developmental functioning. (This includes motor skill, social communication, personal living, and community living skills.) This test placed Noah in the Limited Range compared to others his age. Also, his Adaptive Behaviors (dressing himself, talking, walking, a person’s ability to adapt to his/her environment) are in the Limited to Very Limited Range compared to others his age.

Simply put, Noah is NOT functioning as well as he should be given his intellectual and early developmental skills.

This is what the last paragraph of the report says,

“Based on the data collected during the course of this evaluation as well as direct observation of Noah, there is enough evidence to support the presence of an Autism Spectrum Disorder at this time. Noah’s eye contact, response to name and response to other social overtures is notably poor. He initiates very little social interactions and does not respond reciprocally to social overtures. Noah is also noted to engage in a high level of repetitive behavior and visual inspection of objects especially when he is not being interacted with directly.”

The report also mentions words like Special Education, curriculum modifications, environmental modifications, behavioral management strategies, structured environment, limited punitive feedback, etc., etc.

What?

I have to admit that when I first read the report, I was kind of crushed and overwhelmed. What did all this mean for Noah and his future? I’m still not sure, but I do know that Noah has come a LONG way since these tests were done. All we can do is hope that Noah continues to improve and we continue to make the best decisions for Noah’s future.

Feedback Session

Noah had his testing on November 24, 2008 and he was a champ! He had no meltdowns and finished in 1 1/2 hours! We met with the psychologist on December 15 for a feedback session. This is what we were told.

Autism is described in two different ways.
1) How severely does the disorder affect the person's everday life? (mild, moderate, severe)

2) How well does the person function cognitively? (low-functioning, high-functioning)

Here is what they have determined for Noah at this time (this could change)....Noah is considered to have mild-moderate, high-functioning autistim. Noah is very smart, but he has some issues with behavior and communication.

The recommendation from the Autism Center was to continue Speech, Occupational Therapy, Help Me Grow, and Early Intervention classes. They also suggested adding ABA Therapy, but this really isn't available in our area so we didn't. They also suggested joining a support group and attending some classes that they offer about autism and related topics.

A few days later, we received Noah's test results.

The Second Opinion

Just a few days after Noah's appointment in Akron, we received a call from the Center for Autism Spectrum Disorders in Westerville. We had been waiting for an evaluation appointment with them since May. I couldn't believe that we finally heard from them. We decided that we would go ahead and get a second opinion since Noah's insurance would cover the cost. This appointment was very different from the appointment in Akron. We went down there and met with a child psychologist, a developmental behavior pediatrician, a case worker, and a psychometrician. They observed Noah, did a physical, interviewed me and daddy, and many other things. The appointment lasted about 2 1/2 hours.

The doctors there basically came to the same conclusion that Akron did, but with one difference. The only difference is that the pediatrician in Westerville doesn't think that it is necessary to sedate Noah and do an MRI unless we want them to. I was never really comfortable with having the MRI anyways, so I am happy about that. They scheduled Noah for an appointment on November 24th for a 4-hour testing/evaluation session to determine his strengths/weaknesses and cognitive level. Let me say that this place was great! I loved everyone there. We were given so much information and helpful advice.

I think that I have finally come to grips with the fact that Noah has Autism. Up until now, I have talked about it as if it were somebody else's child. Almost as if I was on the outside watching it happen. After two evaluations, numerous doctors and therapists, and my own observations, there is no doubt that Noah is autistic. Now I need to focus on what can be done to help him achieve what he is capable of achieving.

The First Opinion

After being told that we may have to wait a year for Noah to be assessed at the Autism Center, we decided to see if we could get Noah in somewhere else quicker. The only other real option was Akron Children's Hospital. The problem with Akron was that they weren't in our network. We decided that if we had to, we would just pay in cash. (We didn't know about BCMH at the time, but found out at the appointment. Luckily, BCMH paid for the visit.) We called Akron and found out that Noah may be able to get an appointment in just a couple months. We filled out all the paperwork and mailed it back. They called shortly after and set his appointment for October 20. Finally, we were going to find out what was wrong with Noah.

On October 20th, we headed up to Akron. His appointment was with a developmental pediatrician. She was really nice. We brought tons of info with us. Videos of Noah, copies of test results, evaluations. She looked over all the test results from Dr. H and all the other paperwork. She asked us some questions. She observed Noah and watched the video footage. She performed the M-CHAT and CARS evaluations on him. After she was done, she looked at us and said, "He has autism. Continue speech and occupational therapy. I'll refer you to the feeding clinic and schedule an MRI becaus of the hypotonia. Bring him back in 3 months. There really isn't anything else to do until he turns 3. Then we can look at other therapies" Wow! She also mentioned things like PECS and communication devices...etc. Okay, this appointment left me feeling a little overwhelmed and underwhelmed at the same time. I was glad we had a diagnosis, but I felt kind of let down. I guess I expected some ideas for helping Noah with his behavior or maybe some more detailed information as to where he was developmentally. I don't know. Maybe I wa asking too much.

Sinking Suspicions

In May, Noah had an appointment with his pediatrician. During the appointment, Noah spent most of his time feeling the texture on the walls and spinning the tires of a toy truck. We asked Dr. H if this was normal for a 15-month-old. We also expressed our concern that Noah was not responding to his name. Dr. H looked at us and said, "I've suspected something since I first met Noah. Do you care if I check a few things?" Of course we didn't mind! He left the room and returned with some blocks, a doll baby, and a few other things. He tried to get Noah to imitate him and stack blocks. Noah was not interested at all. Noah did, however, show enough interest in the doll to pick it up and throw it on the floor. Dr. H also called Noah's name to see if he would respond, but Noah only responded when Dr. H tapped him on the shoulder.

After he had finished, Dr. H looked at us and said, "I think Noah has a form of autism called PDD:NOS. Don't worry. It's not a death sentence. I have a form of autism myself called Aspberger's. We'll start therapy, get a formal diagnosis, and he will make progress." Dr. H set Noah up for a hearing test, a Speech evaluation, an Occupational therapy evaluation and told us to get in touch with our local Early Intervention Program, Help Me Grow. He also had Noah tested for all sorts of things. He tested him for Fragile X, food allergies, and stuff like that.

Within a month, Noah had passed his hearing test, was having weekly speech and occupational therapy and had a case manager through the Help Me Grow program. I think I was in some form of denial. When I spoke about the possibility that Noah may have autism, it was as if I was speaking of someone else's child. I remember also thinking that Noah was too affectionate, too social to have autism. It didn't help matters that most of the people involved with Noah didn't think he was autistic either. We were on a waiting list for an assessment at the Autism Center through Nationwide Children's. They said it could take 6 months to a year! I wanted, no I needed to know, now.

On a side note, we also discovered from the bloodwork that:

(1) Noah does not have Fragile X;
(2) Noah has an IGG allergy to casein;
(3) Noah had low Zinc, IGG, and Iron; and
(4) Noah has an extremely high amount of B12 in his system (the theory that Dr. H has is that Noah's body does not convert B-12 into Methyl B-12).

We started Noah on supplements for everything and took him off of dairy.