EEG Results

After several weeks of waiting, Daddy decided we needed to call and get the results of the EEG. I was content with pretending they didn't exist. I called this morning and began the agonizing waiting for a return call, only to find out a few hours later that the results came back normal. I love getting good news. Now I'd like some more, please.

Katy was sick yesterday so today was our first day back into therapy after the holiday weekend. Mr N was excited to see Katy and even gave her some hugs.

Mr N did pretty good during therapy today, it was only 2 hours long since we had a meeting at the school that interfered with therapy. Since it was a cold, rainy day and shortened we let the kids watch a movie so that Katy could see how much Mr N repeated things from the movie. She got to see him sing along, repeat lines and say cute things from Phineas and Ferb.

The meeting with the school was unsuccessful. Mr N fell asleep on our way there and slept for the first 30 minutes while mommy answered a slew of questions. My witty responses brought me commendation on my amazing sense of humor. I am funny, there is no denying.

When Mr N woke up he was not so thrilled about being in a strange place with strange people looking at him and trying to engage him. Soon the room was filled with cries and screams despite my best efforts to convince him that it would be fun. E took advantage of the situation and played with all sorts of toys and explored the room, it was a kindergarten room so it had lots of fun stuff.  I finally took Mr N outside in the pouring rain to calm him down, the psychologist accompanied me to try to obtain more information and to try to get Mr N to respond. It took about ten minutes to get Mr N calmed down then we headed back inside. This did not bode well so we headed to the car with the entire evaluation team in tow. We buckled Mr N into his carseat and he calmed right down, accepted the toy he was offered and began interacting with the speech pathologist. They took turns trying to get him to do things. He did do some talking, high fives, and fist bumps but they didnt get enough results to finish the report. They will come next Wednesday during therapy to observe him.

His IEP that was scheduled for this Friday is rescheduled for next Friday, so that they can finish up the report before the IEP. The entire process is so incredibly stressful.

Party time

We were invited to a Disney themed party this evening, most of the kids (and some of the adults) dressed as Disney characters. It was complete with music, pizza, musical chairs and a costume contest. Daddy isn't back from his weekend trip yet, so I was flying solo with the kids. I knew E would absolutely love it, two of her favorite friends were hosting the party and so I wanted Mr N to have fun so we wouldn't have to leave early.

We were among the first to arrive, I was hoping getting there early the people would gradually arrive and not be so overwhelming. Mr N started playing with the balls and balloons and checking out the food tables. It took some redirecting to prevent him from touching all the caramel apples, the cake and trying to pry into the pizza boxes. As more people arrived Mr N lost interest in the food and was more interested in wandering around. Of course, by the time we started eating, he no longer cared about the food and didn't eat anything

Neither of the kids fully understood the strategy to musical chairs. Mr N didn't play the first round but hopped in a chair when the music started and successfully swiped someone's seat. I was pretty proud of him, even though he made a six year old cry. Next round he decided he'd prefer to be in charge and directed the other children to walk in circles around the chairs. Every few rounds he snagged a seat for himself, it was pretty cute. It wasn't a super competitive game and it was mostly chaos until the last few rounds, by that time most of the younger kids were just in and out of the game.

The party lasted until 7pm but we departed about 6, since both kids were tired and ready to go home. Mr N did surprisingly well with all the people and noise, I was so proud of him. He really has made such a drastic change in the last several months. I love that little man to the ends of the earth, I can't imagine my life without him.

Daddy is on his way home now, I'd guess he's about an hour out still. Unfortunately, he ran into a lot of traffic and didn't arrive home 4 hours ago like we expected. We must figure out a better alternative for these type of situations so he's not spending an extra 5 hours on the road. The kids are super excited to see him and are running circles in the house. Last night E told me that she has been watching out the windows every night waiting for Daddy to get home, even though we told her he wouldn't be home until Sunday night.

Kindness & Randomness

It brings a smile to my face and a tear to my eye when one of my friends or a member of my family posts, emails, texts or calls me about something pertaining Autism. It is truly touching to know that so many people care and take the time to let me know what they've read.

Last night as I was laying in bed I started thinking about how my littles are so incredible. I am so truly blessed to have been entrusted with their care, I can't imagine two better children to have in my life.

Yesterday E and I made sugar cookies with frosting and sprinkles. She loves baking and helping me cook, as does Mr N. We spent the last few days eating cookies, playing Candy Land and watching movies.

Today we went for a little drive just to get out of the house and see if there was any snow up high. There wasn't any at 5000 ft, but we did see some at the higher elevations. Hopefully soon there will be a beautiful blanket of snow down lower.

Peer play

One of the things that needs to be done before Mr N's exit evaluation for Early Start, is a peer play date. They need to observe Mr N playing with a non-sibling peer, we had one scheduled for last week but we were sick all week promting us to cancel. I tried to get one scheduled for today but no one was available.  Next Tuesday will hopefully work out for everyone. Then Wednesday I have a meeting with the school regarding something I don't recall (and I'm too lazy to look at the calendar), Friday the kids have well child checks followed by Mr N's IEP at the school.

Next week is shaping up to be a very busy week which will complement this busy week nicely.

Mr N did really well doing some imaginative play during therapy today, he has recently become attached to a little teddy bear that he calls "baby". He laid it down for a nap in the dollhouse and gave it a pacifier. It was pretty cute.

Mr N's eating has progressed, he is eating more variety and larger portions, so I'm relieved to see that progress.  On Saturday, the hungry hungry hippo ate 7 hotdogs,  just to show Daddy how real men eat.

Both kids are curled up on the couch with me, E is napping and Mr N is watching a movie. They both needed some Mommy time since I spent most of the day painting the kitchen and the bathroom. Mommy needs some cuddles, too. They make my day better.

Down with the sickness

Last Saturday E came down with a cough and began complaining of her throat hurting, while we were out enjoying the first snowfall of the year. We started the day off playing outside in the snow. Here are some pictures from our yard.

Then we warmed up and decided to go check out some of our favorite sites to see how they looked covered in snow. This is just a few miles from home, when we first arrived there was a little low lying fog which quickly took over the entire valley, then started lifting.

We headed home to warm up after our little drive. Then later in the afternoon we headed to Yosemite Valley to see some more awesomeness.

We headed home in time to catch the sun setting.

By Sunday morning all of us were under the weather with sore throats, coughing, sneezing, and drippy noses. That pretty much sums up our entire week, we didn't have therapy at all last week. Daddy and both kids are feeling much better, so we will resume therapy tomorrow. I'm still not feeling better, but surely by tomorrow I'll be well enough and hopefully not contagious. I plan to supply plenty of hand sanitizer for Katy.

Yesterday Mr N woke up a Daddy's boy which entailed tons of cuddling and hugging for Daddy. Daddy was quite happy to provide the hugs and cuddles from the usual Mommy's boy. I'm so happy to have such a wonderful husband and father for my children.

Words words words

With Mr N's quarterly review coming up we are studiously trying to record all of his words. His goal for this quarter is 50 words. I started recording them Tuesday, he is up to 44. I'd really like him to meet this goal. Since I've been keeping track, I've noticed that he is doing a lot more echolalia. It's hard to know what is good, what is bad, and what should be encouraged versus discouraged. While reading "Thinking in Pictures" by Temple Grandin I came across her opinion on echolalia. She indicated that children do echolalia to practice saying the word and to hear what it sounds like coming out of their mouth.

I've quite decided that I will not discourage echolalia. I've noticed the more Mr N does it the better he gets at pronouncing words correctly.

Yesterday Mr N did pretty good during therapy. He did do receptive color matching, but I don't feel like he really understands that red is red. I think we have a lot more work ahead of us to get to where I'm comfortable saying he knows his colors. I'm confident he can distinguish between colors, he can color sort them quite easily, but I don't think he understands that each of them have a different name and which is which.

I'm sure it is human nature, or at least maternal instincts that make me want to get the training and education to be able to teach him everything, to understand how to train him to speak, and fulfill his sensory needs. It is so bothersome that I don't have the skills needed to teach him everything. It is so frustrating that he talks and I can encourage him to talk, but how do I correct his manner of speech?

Sometimes I start to get hopeful when I tell people that Mr N's speech is at about a 12-13 month old level and they assure me that their child who is 18-24 months doesn't talk as well as Mr N. I start to think, wow maybe he is really catching up, then I spend a few minutes with Mr N and back to reality, he is quite legitametly at the 12-13 month old level in speech. I never know if I should tell people that they should have their child's speech evaluated when they say Mr N speaks better or just let it be. Talking to my sister-in-law who has a 2 year old always assures me that Mr N is, in fact, delayed. My niece always wants to talk to me, hearing her sweet little voice say "hi auntie, how are you?" is really all I need. Her speech and vocabulary is expanding on track and quite rapidly much like E's did at that age. Oh how I wish Mr N would increase his vocabulary as rapidly as my niece, how I wish he spoke as well, with as much inflection and enunciated as well, but alas, this battle is mine, we will conquer this delay.

Yesterday after therapy ended we loaded the car and headed south, Daddy has a meeting today in Irvine so we made the drive down with him, for a little change in routine. The trip down was relaxing, it gave Daddy and I a chance to talk and spend some time together. We got checked into our hote,l and let me just say, this is the coolest hotel room I've ever stayed in. It is quite large and has a nice size sitting area, office area, plus a spacious sleeping area with a split bath and walk in closet, it is complete with a microwave, fridge and storage space for our food. The airport is quite close by so the kids have enjoyed watching arrivals as they descend towards the hotel.

This morning Daddy headed to work, while the kids and I scouted out the nearest Target to obtain drinks, snacks and some much needed long sleeve shirts for E. I'm not sure how I failed to purchase her warmer clothes prior to now, but I did. We have a chance for snow in the forecast at home, so we need to be prepared with warm clothes!

Of course, since we don't have TV at home the kids think staying in a hotel is the bees knees since they get to watch TV shows that they have never seen before. We also had the opportunity to see a rare taxi this morning, E was quite impressed at the sight of the taxi and announced quite excitedly "look! there is a taxi! I didn't know we had taxis here....here on planet earth!". Indeed we do, indeed we do.

Tomorrow we head back home, we intend to stop and visit my cousin on our way through her town.

Life's a Dance

Life has a funny way of working things out. It seems some days our life is full of worry, concern, and pain; other days it gets balanced back out by amazing opportunities that are extended our way. While I'm a firm believer in working hard for what you want, there are times when all that hard work is noticed and rewards are forthcoming.

I know my last few posts have been full of emotion, pain and stress but that is also part of our life. I try to keep a balanced view and not let the dark days get too dark. Dealing with the worry and heartbreak of having a child with special needs can be overwhelming and even all consuming if we allow it. But I try very hard to focus on the positive as well, we live in a beautiful area, I have an amazing husband with two gorgeous children, and we are all in good health. We are blessed with the ability to spend a lot of time outdoors enjoying Jehovah's wondrous creation.

Yesterday Mr N had a good day in therapy, he did an awesome job putting together the alphabet puzzle and even saying some of the letters. Every bit of progress makes my heart leap, I am incredibly proud of my little guy. The amount of effort he puts forth in order to say words is astounding, but he doesn't give up and neither do we. More work equals more rewards.

Today we meet with the school district for the first time. I'm quite nervous and just want it to be over, but it's not until this afternoon. I'm also hoping to squeeze in a play date today for the kids.

We met the new coordinator today, the old one is moving onto another position with a new company. The new coordinator is very nice, she engaged Mr N and tried to get him to receptively identify colors without success, but he was friendly with her.

The Weekend

Saturday morning Mr N woke up at 2:30am and started tugging at the nodules. He would not go back to sleep, so I got up with him and kept him from picking at his head.

We left for Sacramento at 5:00am to get his nodules removed, he fell asleep on the way up, so at least he got a little more sleep. Once we arrived at the hospital he did not want to go in, it took a lot of convincing from Daddy to get him inside. While we were waiting, he took laps through the hallways until they were ready to remove his nodules.

It didn't take too long to get all of the nodules removed, she cleaned up his head the best she could, but there was still some glue left on his head when she was done. He didn't scream and cry quite as desperately as he did on Friday, so that was a bit of a relief for Mommy and Daddy.

After departing the hospital we headed towards home, but not before hitting up Costco & Walmart for some much needed groceries. Then we headed home to do some relaxing. Daddy, of course, doesn't know how to relax and he did some work around the house while I napped happily on the sofa.

Sunday morning we headed to meeting but ended up having to sit in the back room because we were late. Mr N does not enjoy sitting in the back room, and until yesterday I couldn't figure out why. The first 20 minutes I stood at the back of the hall holding Mr N to keep him happy. While standing there I got to thinking and wondered if the speakers in the back room were creating too much echo. I decided to turn it off to see what happened, he was fine after that. I can't believe I hadn't thought of that before.

After much convincing I talked E into giving a comment during meeting, she hasn't done it in quite a long time because she is too scared. She finally agreed to giving it a try, and she did great. Afterward she said "that wasn't scary at all, can I answer at the next meeting?". I'm so proud of my little girl, she is growing up and getting brave and trying things she's scared to do. She immediately told Daddy when we came home, she was so proud of herself.

Sunday evening we had a few friends over, built a bonfire, then roasted weenies, marshmallows and had a great time. Mr N ate 3 hot dogs before anyone arrived then ate another 1 1/2 hotdogs once they arrived. I was pretty impressed by his eating. E, on the other hand, was all about the pumpkin bread. I'm pretty sure she ate more than anyone else. Hopefully today we can get some more pumpkin bread made since I only used half the pumpkin in the first two loaves that I baked. Then I'm going to try to puree up some spinach into brownies in hopes that Mr N will eat them.

Yesterday, today and tomorrow

Yesterday....
Daddy woke up not feeling well and spent the day working from home. Since Daddy was home I took advantage and took E to town for some mommy and daughter bonding time. We mostly went so we could get supplies to do a project from her High Five magazine.

We made several stops and had lunch together before heading home to do Art 101. It was kind of a messy art project. We tore wrapping paper into small pieces and adhered them to a clipboard. I'm not sure how practical of an idea it is, since it is impossible to make them all smooth, but that is hardly the point. E had a lot of fun and we will soon do the other side since it took forever to dry.

E and I cut up the pumpkin we picked up and put it in the oven to bake. We ran out of time to make pumpkin bread but it is on the agenda for today. She has not stopped asking to make it.



Today....
Mr N's EEG was scheduled for 10am this morning so we woke up the kiddos bright and early this morning for a 7am departure. Mr N was less than thrilled about being woken up and dressed so early. E handled the rude awakening a little better than he did but she did complain about wanting to stay in bed.

We arrived at the hospital about 40 minutes early, I went in and got him checked in while Daddy hung out in the car with the kids. Mr N is not a huge fan of waiting rooms and he typically starts into meltdown mode while waiting. This waiting room had a huge doll house so we took him in about 25 minutes prior to his appointment so he could play. Both of the kids loved the doll house and other available toys.

While waiting we could hear crying, which incidentally sounded like kittens meowing, as I was already nervous I just pretended they were indeed kittens and not a scared baby. I talked to another daddy in the hallway as I could hear his child screaming. He said his son is 4 and was getting the nodules removed and that it was about 10 times better than getting them attached. Things were looking progressively worse for my little boy.

They finally called us back to the torture room and Mr N was fine as long as he sat in one of the non-patient chairs. Once we laid him on the bed it was all over but the cryjng. It took about 45 minutes to attach all the nodules, she had told us to expect an hour to an hour and a half so I guess we should be pleased that it was only 45 minutes. I laid on the bed with Mr N and cuddled him the best I could and held him still, wiping away tears from both our eyes. Once the nodules were all attached she began wrapping his head to prevent him from pulling off the nodules.

I was able to pick him up and hold him while she finished hooking up and packing the reader and getting it tucked away into a mini backpack. He was still crying and trying to leave but he finally calmed down and laid his head on my chest. As much as I wanted to just hold him for hours I had to put him in his carseat so we could head home.  He calmed right down in the car and didn't pick at his head at all on the way home. I'm so proud of my brave little man. Thankfully Daddy kept a brave face and was once again my rock to lean on. I know it is not any easier for him than it is for me, he is just better at not letting the tears flow.

Mr N fell asleep about 30 minutes before we got home so now I am cuddling my precious baby and hoping he forgives me for today. We have to journal what he does today so they can have an idea if what he is doing while they read the EEG.

Tomorrow...

We head back to Sacramento for an 8:00 am appointment to have the nodules removed. It should only take fifteen minutes, so hopefully it is less stressful and tearful.