Regression and Progression

My sweet, loving, beautiful baby boy was 9 months old when he suddenly and drastically regressed socially. His social regression was immediate and profound, he went from the lovable baby that everyone held and played with to a terrified child who only let mom or dad hold him. It was nearly 2 years before someone else was able to hold him. To touch him meant to hurt him, he would react to a touch as if he was punched.

Next in his regression was his speech. It was profound and noticeable. My once brilliant toddler stopped using words and struggled with speaking. He was 15 months old when he had lost so many words that we were becoming very concerned. He had his first speech evaluation at 15 months old, he was still so advanced for his age (16-18 months), he didn't qualify for any further testing nor did he qualify for services. By 18 months he was nearly nonverbal, I believe he was down to about 5 words. His second speech evaluation he was so delayed  (10-12 months) they immediately began services before waiting for an autism diagnosis.

I'm not certain when his sensory issues really kicked in, but the thing we noticed most was his love for all things velcro. It started with his sandals, he'd suck on the soft side of the velcro until the shoes were ruined. His sensory issues soon spilled over into his eating, his diet dwindled down to a few items where it has stayed with very few additions in the last 2 years. I am so proud to say that he ate a pea the other day, he cringed and gagged but my little boy ate it and kept it down. He also ate an oreo dipped in milk, which is amazing because they are so super yummy that way.

Progression. I've got this entire blog, months worth of tidbits and epic moments, but to sum it up? I'm not sure where to start. Socially? I have no concerns, he has progressed so much that I'm certain that he'll do amazing in school interacting with the teacher, other students, and able to participate in class. He has learned quite well how to self regulate, when he's overwhelmed he'll step away until he's ready to join back into an activity.

Sensory? We've seen such huge progress that it really isn't even on our radar anymore. He'll rub stuff on his upper lip and that is the extent of it. Obviously, the eating issues are probably here to stay, but that is so much more socially acceptable than sucking on velcro for the rest of his life.

Speech? It's so hard to gauge. He's made immense progress, he talks in sentences, he'll repeat anything you ask him to, he asks questions, makes requests, uses words much more than grunting or gesturing. He intentionally irritates his sister by repeating everything she says. His enunciation and articulation have definitely improved, but not to an acceptable level yet. I'm anxious for his next speech evaluation so we have a better idea of where he stands.

I feel like speech and some cognitive issues (numbers, letters, colors, shapes, etc) are the only delays at this point.

Lunch at school

Mr N has done so well at preschool lately, that we decide to attempt lunch. The last few weeks he's washed his hands with the other children and tried to join them for lunch. Last week we decided that we'd give it a go for this week. Today I arrived at lunch time so that I could be there to assist. He got in line, washed his hands, found a place next to one of his friends to sit, sat down and promptly pushed the food away. He was so happy to be having lunch with the class, but had no desire to actually eat the food. He lapped some of the milk out of his cup like a kitten, but there was no eating involved.

After talking with the specialist that works with Mr N we decided that next week I'll pack him a lunch to take so that maybe he'll eat along with the other kids. Lesley, the specialist, said that Mr N has two friends that he plays with most of the time, but that he still gets overwhelmed. When he gets overwhelmed he'll step away from the other kiddos and play alone for a few minutes then join back in with them. I'm super impressed that he's figured out how to self regulate, being able to step away, regain control, then join back in is such a vital skill.

As Mr N has progressed leaps and bounds these last few weeks, it's become quite apparent that 1 hour of preschool each week is just not cutting it. It's time to increase his time spent either at the preschool he's been joining or somewhere to get him what he needs to succeed. We discussed this as well, getting Mr N into at least half day of preschool.

The last few times he's had preschool or therapy, the pick up does not go well at all. There is no bribe big enough to get him to leave in a good mood. He starts crying and fighting from the moment I start dragging him to the car until well after we arrive home, the meltdown is of epic proportions.

Happy Day

We've all been sick which resulted in Mr N missing both days of therapy last week. Today was his first day back, he woke up cranky, which is never a good start to the day. First thing I told him was that he had school today and surprisingly that seemed to cheer him up. I reminded him several times throughout the morning that he had school today to which he responded with joy.

When we arrived at the preschool he literally ran to the front door, once we got inside he ran to his teacher and didn't look back. I thought that having missed last week that he would struggle today, but when I returned to pick him up his teacher informed me that Mr N had done amazing today. In the last few months the longest duration that he's participated in story time has been one minute. Today, Mr N was doing something when they started story time, when he saw all of the other kids sit down, he joined them, then accompanied them in all of the movements, as well. Fifteen minutes of continual participation in story time is progress of epic proportions.

I'm astonished by his progress and growth, overjoyed. Once story time ended he got in line with all of the other kiddos to wash his hands before lunch. I simply cannot believe my amazing little boy.

Frustrations

We've been battling what seems to be a never ending cycle of colds, sinus infections and pink eye resulting in missing school for both kiddos. Not to mention being cooped up in the house for days on end.

The most frustrating part is that Mr N doesn't ever cough up his phlegm so when he goes to sleep at night he starts coughing and coughing and coughing until he pukes. Our solution was to give him Benadryl to help dry up the phlegm to avoid the puking. Initially it worked, we'd fight him to take the medicine and he'd maybe get half of his tiny little dose down, but it still seemed to do the trick. By fight him I mean one of us hold him down and the other hold his head still and squire the medicine in his mouth. Only the last 3 times we've attempted to give him medicine he starts coughing and coughing and coughing until he pukes. So we've gone from trying to help him to forcing him to puke before he goes to bed. I just want my baby to feel better.

Is there really no better means of giving little ones medicine? Meltaways are only for children over the age of 6 and 48 pounds, so tylenol, motrin, ibuprofen are not even considered for Mr N anymore, we just try to keep his fever down and let it run it's course.

I'm exhausted from the sleepless nights and coughing kiddos. I'm really hoping next winter is kinder to us.

Success is ours!

The last few weeks meetings have been rough. We've arrived after the meeting has started but were unable to sit in the auditorium and had to sit in the back room. This does not bode well for Mr N. Today I decided we should try another technique, E and I got to meeting early so we could get seats in the auditorium, then Daddy and Mr N came after meeting started. It was a success, he stayed at the seats until the last 15 minutes. It was such a great day for him!

His behavior was so good during meeting several people commented on it afterwards. I'm not sure why I hadn't thought of taking two cars prior to today. 

Last night with the time change we let the kiddos stay up a bit later than usual, but when the time came Mr N did not want to go to bed. After several attempts to get him to lay down, I let him crawl up in my lap, then rocked him to sleep. It was so sweet and wonderful to rock my baby to sleep, I rocked him, held him, and cuddled him even after he fell asleep until I was ready to go to bed. He stayed in his bed most of the night, but crawled into bed with Mommy and Daddy at some point.

I'd mentioned previously that I was planning to make platform beds for the minions, but as weeks turned into months my projects have only increased. As a result, I bought metal bed frames for their beds and will either make or pickup headboards for them at some point.

After months of procrastination I finally finished up the curtains for the master bedroom, as well as painted it and all of the trim. We are just waiting for the curtain rods to arrive so I can hang the curtains. This prompted me to also purchase a bed frame for our bed, which also motivated me to make a headboard. We picked up materials for the headboard yesterday and started it. I hope to finish most of it today, but again we won't be able to put it together until the bed frame arrives later this week. Among other projects, I picked up a couple of retro end tables to redo and use as nightstands. Our current nightstand will move into office to provide a more stable location for the printer while giving us more organization and storage space.

Heartache and pain

It's been a while since I've had such an emotionally taxing day, but today pretty much fills my quota for the quarter. I woke up with a stress headache that has only gotten worse as the day has progressed.

The kids well child checks were today, Daddy had an important work meeting so my SIL offered to go with me to help out with the kiddos. We made a plan ahead of time that she would hang in the car or outside with the kiddos until appointment time. When we arrived at the doctor's office I went inside to fill out the necessary paperwork and get the kiddos checked in for their appointments. The staff was very accommodating with my wishes for Mr N. When they were ready for him, I went into the room to discuss all of the history with the nurse then when the doctor was ready to examine Mr N, I went out and got him from my SIL then took him straight to the exam room.

I'd been on pins and needles all day stressing over how he would do, would it be like all of his other appointments in the last few years or would his new found progress carry over to doctors appointments and be smooth? We walked through the front door, Mr N said "hi" to the receptionist, then the nurse greeted us and told us to head on into the exam room I thanked as did Mr N with the sweetest "thank you" that surprised the staff after my very insistent warnings on how poorly the visit would turn out.

We calmly walked into the exam room where I had a few of Mr. N's cars, a teddy bear and his iPad waiting for him. He picked up his toys then looked around and saw the all too familiar exam table which was a dead giveaway that bad things were about to happen. I raced him to the door to shut it while we momentarily waited for the doctor to arrive. Moments later my fear, dread, and anxieties were all realized as the screaming and fighting began. He wouldn't let me hold him, he didn't want to sit down, he just wanted to leave, he wanted to leave fast and NOW. A nurse brought him a sucker but was met with hostility.

The doctor arrived shortly to begin the exam, she inquired as to the best way to proceed, then began her exam as I held a very angry little man down. Holding his arms, leg and head still so she could examine his ears was heart wrenching as he looked at me with so much sadness. Next came the tummy exam which about killed me as he screamed and held both sides of his head in his hands just wanting it all to end. We skipped the weighing and measuring as the chances of it being successful were less than 1%. The doctor mentioned he was obviously a healthy height and weight. With tears streaming down both of our faces we headed outside to switch kids. Leaving Mr N with my SIL while taking E in for her appointment was extremely difficult, I just wanted to cuddle and console my hurting baby. After giving him a few last cuddles I handed him off then headed inside with E.

E's appointment went great, she showed off her hopping, skipping and balancing skills for the nurse. She is finally in the 9th percentile for weight, weighing in at a whopping 35 pounds (only 5 pounds behind her little brother). She happily picked out stickers for herself and her brother, then let the doctor do the exam. E was anxious to head back outside to join her cousins, standing at the door holding the handle for the last 10 minutes while mommy talked with the doctor.

The doctor was great, she offered some more options for more services for Mr N that I intend to look into and take advantage of, as he deserves all of the help he can get.

We took the kids to the park to run off some energy before heading back to my SILs house. The kids played for a while, then as we were heading out to leave I looked down and E was missing a tooth. I asked her where it was and she said "I spit it out", which she did, just like she has been saying she would do since it became loose. Funniest kid ever. I picked her tooth up off the floor, put it in a Baggie then we headed home.

My heart is still filled with sadness for my little boy, seeing the fear and pain in his eyes while I held him down makes me hurt. Being a parent is so hard, doing things that you know need to be done even though they cause pain. As I sit here thinking about my boy with a headache and much heartache, I can't even imagine how much more painful today was for him. If only I could take that pain for him, I would gladly do so in a heartbeat.

Story Time

I've been trying to figure out a few more activities throughout the week for Mr N that will help him adapt socially. Yesterday I took E to the library to check out some chapter books and while we were there I found out they have story time on Thursdays. So I'm going to add that to our weekly schedule and see how Mr N does. He does good with story time at therapy when they do puppets and interact with the kiddos, which they do at story time at the library. So I'm super excited to see how he does. I'm planning on starting the week after Halloween since the next two weeks are Halloween stories.

While my goal at the library was to introduce E to chapter books, we failed miserably. Miss E thinks that books needs colored pictures, finding books with pencil sketches wasn't good enough. While I understand it must be frustrating to still be intrigued by colored pictures, her reading level is to where she needs to be in chapter books. So we left with one chapter book that I'll read to her, an advanced book that she can read and two easy readers that she wanted to read to Mr N.

Mr N has began saying "yes sir" the last few days, pretty much anytime he's willing to comply with what he's instructed. I've been trying to correct him when he's speaking to me, so he'll say "yes ma'am" to me and "yes sir" to Daddy. We will get there, it took a bit for E to figure it out, too.

"I don't wanna"

Mr N has been showing a streak of stubbornness. He doesn't want to stop what he's doing to go somewhere. This morning he didn't want to stop playing with the dinosaurs to get dressed, then he didn't want to brush his teeth, when it was time to go to therapy he didn't want to stop playing with his iPad. Forcing him dressed has never been an easy task, but it is becoming increasingly more difficult the older (and larger) he gets. Thankfully the fight to get dressed isn't a daily or even a weekly battle, but when the battle is fought I struggle to win.

Eating has always been an issue for Mr N, but weight has not. He has always had a healthy weight and height, sticking to his growth curve. He tipped the scales to 39.6 recently which made me understand why the struggling to get him dressed has becoming more of a challenge. His eating seems to have improved over the recent months, maybe not the variety but he will eat apples, strawberries, and bananas pretty consistently every day. He still loves his french toast bread, fruit loops, ramen noodles and fruit snacks, which is basically the range of his diet. Occasionally he will eat pizza and chicken nuggets but only when the mood strikes him or if he is really hungry.

Mr N has a well child check coming up in a few weeks, I'm anxious to see how he deals with that. Having a new pediatrician in a new office could go either way, a meltdown or no big deal. I'm hoping it goes well but expecting meltdown city. He also has a dentist appointment in coming weeks that gives me the same cause for concern. I'm fervently hoping that his recent behavior towards school, therapy, friends and other social activities will carry on into the doctors offices.

Social Butterfly

Nearly a month has passed since my last post, I thought I'd have thoughts to share daily. Having Mr N go to therapy outside the home does have drawbacks, since I'm unable to observe and document his progress during therapy.

Mr N started off having therapy in a playgroup once a week for an hour, after a couple of weeks they added an hour a week of him joining the preschool for their activities. The first week at the preschool it took much persuading to coax him inside from the playground. On week two they started him out inside with the other kids and he did great. His therapist said he seemed a little overwhelmed a few times with the larger group of kids but he didn't have any meltdowns.

His speech is still improving, his speech therapist said he will repeat just about anything they ask him to say. His new favorite word is "fire" possibly because E brought home a bunch of fire related stuff last week as it was Fire Prevention Week, she had fire fighters visit the school and hand out goodie bags then they made fire truck treats out of crackers. The way Mr N says "fire" is super cute, he many times is referring to his fire truck but just says fire. For example, he'll yell "fire, fire" pointing upstairs to his room because he was playing with his fire trucks. As you might imagine, we are trying to get him to say "fire truck" when applicable. Yesterday afternoon we went for a drive over the mountains, on our drive home we were behind a snow plow that had flashing lights; Mr N kept saying fire while E insisted that it was a tractor. After many explanations to both kids that it was, in fact, a snow plow and not a tractor or fire truck, they both said okay then continued saying "tractor" and "fire".

Yesterday, after meeting we were visiting with friends when we noticed that Mr N was approaching everyone saying "hi" making the rounds several times, then returning to his friends for a few minutes.  It was amazing to see him being so social, he shared his fire truck with one of his friends and hugged one of my friends without reservation. Daddy and I laughed with amazement at how far he has come socially. I thought this budding new personality trait may just be a fluke, yet today we were at the grocery store and Mr N proceeded to greet everyone whose path we crossed, showing his dinosaurs, talking to them and introducing me.

My heart is full of happy.

Bounding ahead

Today was Mr N's second day of playgroup, he did great! He was the first kid there and was a title curious when I dropped him off. When he started following me back out of the building I just said "your friends will be here in a few minutes, you can go ahead and play" he replied "okay" turned around and followed the therapists into the classroom.

I'm still astonished by his progress, no tantrums or meltdowns, he can reason and understand with very little effort, and he has no qualms about being dropped off at "school". When I returned to pick him up I inquired about longer and more frequent sessions. Starting next week they will start taking him to the preschool across the street to integrate him into bigger group activities. I have no doubt that he'll do great.

I'm still blown away by where he is now versus where he was a year ago, nine months ago and even six months ago. Not only his eagerness to go to "school" but his ability to function in so many social areas.

Saturday we went to the lake but it was raining so we returned home after an hour. On our way home we stopped at a sporting goods store and the  Walmart. As we were walking towards the checkout in Walmart Daddy turned to me and said "I can't believe we can go to the store and not have a meltdown from him". Just a few months ago we would dread shopping and avoid taking him as much as possible.

My heart soars as my baby grows in so many ways. His speech continues to improve weekly adding words to his vocabulary and improving his pronunciation   Today he said dinosaur for the first time and it was super clear and discernible. I'm so proud of my little guy, the next year will certainly show us more progress than we imagined.

Sick day

Yesterday the inevitable happened, E woke up sick with a sore throat and slight fever, very slight fever. I got her dressed and ready for school but she wouldn't eat. I had plans with my SIL to go shopping so Daddy said he'd keep an eye on her and take her to school if she started feeling better.

Mr N and I headed towards Costco with my SIL and nephews and nieces, once we arrived I saw that I'd missed a call from Daddy so I checked in with him, sadly E had been puking and wouldn't eat or drink anything. Since Costco is 2.5 hours from home we decided to get our shopping done since we were already there. This was Mr N's first trip to a Costco in well over a year, I was nervous, anxious and fearful. As well as equipped with his iPad, new cars, old cars, my phone and his cousins. To say he did great would be an understatement, my little man did a tremendous job at staying calm, being polite and courteous, and behaving. He played with his iPad for a while then shared it with his cousins, held onto his strawberries for a while then chose some Nilla wafers to hold. I'm still in shock by how much progress my baby has made.

On our return trip Daddy called again to say E had a few sips to drink but nothing to eat and couldn't hold down the ibuprofen he gave her. When we got home we did some cuddling, I showed her the books I bought her and she asked for something to eat. My little miss still has a fever but she was feeling better by bedtime last night and hasn't puked all day today. Hopefully she is well enough to attend school tomorrow.

Play Group

Today was Mr N's first day of play group, there are two other children in session with him. Having the children together helps improve social skills and learn team working skills. Due to past experiences at the development center they suggested we leave the door open from the playground to the classroom so that when we arrived Mr N could play outside then move inside when he was ready. However, Daddy and I have found that Mr N has matured enough that we thought that he would be okay with starting in the classroom.

Sure enough, I took Mr N into the classroom without any issues, I asked the therapists if they wanted me to stay or leave, they said I should go. So for the second time in recent weeks I left one of my children behind while I walked away in tears. Mr N was excited to start "school" as sissy has been calling it, she got him all pumped up by telling him how awesome school was and telling him he'd have a great time. She was right, he loved it so much that it took me a good 15 minutes to convince him to leave even using a bribe.

His playgroup includes the speech therapist, occupational therapist and early childhood development teacher so that they can all work together with the children. I'm not sure of the diagnosis of the other two children, but they both appeared to be high functioning, speaking, and had good gross motor skills. One of our concerns about playgroup was that Mr N would be exposed to lower functioning children with more severe issues and then pick up bad habits.

E started school a couple of weeks ago, she could not be happier. She loves school, loves to learn, and loves to be a big girl. She is determined to be the smartest kid in the class, not a bad goal if you ask me. I volunteer in her classroom twice a week to help out with math stations, the class is divided into 3 groups while the classroom has 3 stations set up for the groups to rotate between. Each group spends 15 minutes at each station, I assist at the diamond station. The kids seem to really enjoy doing the different stations, although there are a few kids who do not want to participate or feel they are exempt from doing the task assigned.

The first day I volunteered I left the school in total shock and wondering how on earth the teacher ever survived a full day with those kiddos. The second time was a little less chaotic, maybe since it was Monday the kids were still wore out from the weekend. I'm really looking forward to seeing the progress that all of the kids make throughout the school year, the range of development between them varies greatly. Some breeze through a task and master it immediately, others never seem to grasp what it is they are supposed to be doing.

We are looking forward to seeing the growth in both of our kids this coming year and have high hopes that they both will make great strides forward.

Words

I kept track of all of Mr N's words yesterday, I wrote down everything he said. Below is a list of some of the sentences and phrases that he used.

Get back here
Where are you?
Where'd he go?
Need help over here
I'm hopping
Here you go
Brush teeth
I'm going faster
Get down here
Good morning
He's stuck, how do you get him down?
I'm coming

In addition to those phrases he used about 50 words independently or in 2 word phrases. Obviously he has a bigger vocabulary than that. I may keep track today to see how many additional words and phrases he uses.

My goal is to determine what age he is at now verbally. The last evaluations we had put him at 12 months, but when I look at milestones for 18 month olds I'm certain he's beyond that and much closer to 2 years old. If we could get him caught up to 3 years old by next summer then I am confident we can get his speech on track before he starts kindergarten. If I am right and he has progressed a year in speech over the last 6 months, I am sure he can gain another year over the next 9 months.

It seems like the more words he strings together the easier it is to understand what he is saying. If he is just using one word it can be difficult to understand.  His more frequently used words are getting much clearer, like thank you, apple, daddy, sissy, honey, etc.

I'm so incredibly proud of my little man for all of the effort he puts forth to communicate. He will repeat things many times if I'm trying to get him to pronounce things correctly. For example, I was trying to get him to say "milk" correctly because it is very difficult to understand. It sounds like "nill" so I had him look at my mouth and pushed his lips together so he could make the "m" sound instead of "n". It seemed to help, but we never did get the "k" at the end.

Coffee & compound sentences

I'm hoping to start blogging more frequently, I feel like I was better able to track Mr N's progress when I was blogging his daily accomplishments. Today I'd like to keep track of everything he says so I have a better grasp for where is his speech truly is at this point. His frequent use of full sentences has been impressive, for example yesterday he said "can you do this for me?" and "I hear something".  I'll post his list tomorrow and maybe try to dig up the last list I did for comparison. I think having something concrete to give to his speech therapist in a couple of weeks when therapy starts will be beneficial.

Yesterday we spent a few hours at the cousins' house playing, the kids all had missed each other when we were out of town. Mr N and K played together so well while the older three kids spent most of their time together.

After we arrived home from our day of playing and grocery getting we headed to a friends house for a kid party and dinner. The kids did some swimming, water balloon throwing then played inside for a bit. Mr N had a meltdown when we were eating dinner because he wanted to go inside and play. Daddy ended up taking him for a drive until he calmed down. When they returned he again played well with the other kids and had a good time.

I must wrap this up as Mr N is begging for his iPad.

Sunday Travels

Sunday was our last day of traveling, we spent Saturday night in Sioux Falls then headed for home on Sunday. We had decided we should stop and do a couple of fun things on the way home. Our first stop was the Corn Palace in Mitchell, what an impressive place. We let the kids pick out souvenirs, E picked a snow globe and Mr N picked a car that in now way says anything about the corn palace, but it was his pick. The kids loved the corn grinder that removes the corn kernels from the ear, they did several ears then we moved the corn to the mill and ground it into corn meal. Super fun!

Once we were in the car Mr N noticed the snow globe and wanted to play with it. We talked to E about sharing, reminding her that Mr N shares his toys with her, hoping she would let him see the snow globe for a bit. She was convinced it was a good idea, but made Mr N say "snow globe" before she let him see it. Then proceeded to make him say snow globe every time he wanted to see it. You can't imagine how impressed Daddy and I were of our little girl.

During our drive the kids watched a few Baby Einstein videos, when Mr N would say the word, E would tell him he was doing a good job. She was such an amazing big sister coaching him, encouraging him and praising him. E is the best sister Mr N could ever have, we are so proud of her.

Our next big stop was at Wall Drug, we meandered around a bit choosing a few more souivenirs then hit the cafe for some pie (for Daddy) and ice cream. I don't remember Wall Drug being so busy last time I was there (17 years ago) but it was still fun to tour. The rest of our travels were pretty uneventful.

Grandparents

Friday we departed for a week long visit with both sets of grandparents in Daddy's side of the family. We arrived at Grandma and Grandpa's house with a sleeping Mr N on Saturday evening, which resulted in a crabby little boy who only wanted to climb back into the car. Of course, he eventually calmed down and started exploring his new surroundings. E, on the other hand, was full of hugs and love for Grandma and spent most of her time cuddling and being cute.

Sunday morning Grandma made pancakes for breakfast, much to E's delight, then we headed off to do some shopping so Grandma and Grandpa could spoil the kiddos. E periodically enjoyed pancakes throughout the day until she had eaten all of the leftovers, which resulted in Grandma whipping up another batch, E happily finished off that batch, as well. We spent some time each evening at the park so the kids could play.

Tuesday we took the kids to the Wolf center expecting to see lots of live wolves, only to discover they sleep a lot during the day and are primarily viewable in the early morning and late evening hours. After stopping to grab a bite we headed to the bear center in hopes of better luck viewing those beauties. Mr N was done with the tours so I chilled out in the car with him until he fell asleep.

Seeing Mr N warm up so quickly and be comfortable around his grandparents was amazing, seeing then understand at least some of what he was saying was heart warming.

Wednesday morning we packed up and headed to Grandpa and Grandma's house just a couple of hours away. The transition from one house to another was what I feared would be difficult for him to handle. He warmed up to Grandpa and Grandma making our visit relaxing and fun. That afternoon we took Mr N out on his first boat ride, both kids loved it. That night Mr N ate macaroni and cheese for the first time shocking us all.

Thursday we explored a children's museum, then checked out Lake Superior before stopping to get the kiddos something to eat. Mr N again ate macaroni and cheese while E enjoyed some much loved spaghetti. We started back towards Grandpa and Grandma's for the evening when we were rear ended at a red light. Both kids were scared pretty bad but there were no injuries and minimal damage to the vehicle. We stopped for dinner on the way home where Daddy and I asked about how far Mr N has progressed with his behavior in restaurants, it's truly impressive. The meal was pretty uneventful, he was content and calm most of the meal, a dramatic change from previous incidents.

Friday more family came to visit and brought their dog with them, Mr N was beyond ecstatic. He got to pet, cuddle and play fetch with their dog after spending the afternoon playing at the park. Saturday morning we departed for home, stopping at Daddy's friend's house for a few hours to visit on our way. They, too, had dogs that were kid friendly. Mr N played fetch until he wore everyone out before moving inside to check out the toys. He did amazing considering it was the 3rd new house he'd been to in the last week. He was calm and comfortable the entire time, interacting with everyone and even enjoyed a delicious piece of freshly baked banana bread (E horked down 3 pieces during our short visit).

Mr N has progressed so much it blows my mind. It's hard to believe he is able to adjust and adapt so quickly to a new environment and warm up to people so quickly. Watching my little boy sit on his grandparents lap is such a beautiful thing. I don't know that I ever thought that was possible. His speech has improved enough that some of what he says is recognizable by others. I have so much hope for my precious little man.

Keeping up

I just discovered this post didn't disappear. This is from a few weeks ago.


I'm 87.3% sure that my last 10 posts have started with an apology about not being able to keep up with my blog. Again, I'm sorry.

We recently purchased a house which has absorbed most of my time. I've been busy patching and painting walls, filling, sanding, scrubbing and painting trim then spending our weekends in the great outdoors. The kids rooms are painted as well as the foyer area outside of their rooms, once I do the bathroom the upstairs will be completely painted. Next step, furniture. My plan (probably foolish and will be scrapped due to time constraints) is to build them both platform beds. Surely it can't be that hard, right? It will be like building my planter boxes but with plywood on top.....what could go wrong?

Amidst the painting, cleaning and unpacking we've had a couple of meetings with the development center. We had another evaluation for Mr N which went very well, it was done at our house and he opened up and showed off his awesomeness. Then we had a meeting discussing our goals and plans for him. Since their extended school year services are a bit limited and he has cousins to socialize with, it was decided that we will wait to start his services when school starts. He will be receiving speech, OT and general therapies which will take place at a combination of the development center, preschool and our home. I'm super excited about how flexible and willing to work with Mr N specifically to ensure his needs are met.

Mr N's speech has progressed exponentially, I'm certain that I've commented on it in every post recently but every day he surprises us with his quickly increasing vocabulary. His sentences are becoming longer and more frequent. Some give us a giggle as he will say "did you hear me?" and "let's get out of here" while his manners are becoming stronger, saying "thank you" much clearer and unprompted much of the time.

Recently he has began to sing, sometimes he even makes up songs, he sang a song about shoes the other day and sang twinkle twinkle little start with sissy. He tries new things, like yesterday he was determined to see if he could pee between the railings on the deck, he succeeded. Living in town will take some adjusting as wearing clothes outside wasn't a priority when we lived on 5 acres in a forest. Our summertime nudist days are over which of course means more laundry.

Clowns, camping and cars

Since my blogging has been sporadic at best, I thought I'd share some of our summer experiences.

A few weeks ago we took the kids to their first circus. We never know how Mr N will react to new things, especially when it comes to crowds. We arrived a bit before it started and E got her face painted, while Daddy took Mr N to say hello to the elephants and ponies. By the time we were ready to sit down for the circus to start Mr N was done and wanting to leave. Arriving as it started would have been a better plan in retrospect.

Daddy got him calmed down and brought him to our seats, he played with his cars for a while until things started picking up. Then the clowns came out.....I've never seen Mr N laugh so hard for so long in my life. He thought the clowns were hysterical (they were likely the lamest clowns in the history of clowns) and could not get enough of them.

Over the 4th of July weekend we went camping with my brother and his family, as well as a few of their friends. We ended up getting rained on several times throughout the weekend, but still got some fishing, hiking and off roading squeezed in between rain showers. There were 10 kiddos camping with our group which gave Mr N lots of socialization opportunities. He played really well with the other kids and displayed some amazing peer interaction with his cousin.

A couple of the families had 4 wheelers, which Mr N thought were enticing. He would climb up and just sit and pretend to drive. On the last day we were there he got to go for a ride up the road, he loved it. I'm so proud of him for trying new things and being more comfortable around new people. My heart soars watching him grow.

His latest obsession is cars, mostly matchbox cars, but he really likes any and all cars. We've collected cars over the last several months but since a few accompany us everywhere we go they don't all make it back home. Daddy decided we should just buy some from ebay since they sell them in lots of 100. The package came with each car individually wrapped in tissue. Mr N's face was full of excitement and wonder as he unwrapped each car. Of course, he can never decide which car to play with now so he has to dump them ALL out and play with them all simultaneously, which means we have over 100 cars on the floor at all times. Thankfully only a few make it downstairs at a time the rest are in his bedroom.

Catching Up

I know it's been about a month since my last post, and I sincerely apologize. Using the iPad to blog just doesn't work well and the last post I made disappeared.

 Mr N has made such remarkable progress since we've been here it has been astounding. My brother has commented that he can see an improvement in his social skills in the last four months. His speech has improved drastically, not only increasing his number of words, but the pronouncing of words has also improved. "Thank you" is not a new word for Mr N, he's been using it for well over a year but it sounded nothing like "thank you" until the last month or so. Now when he says "thank you" even a stranger can understand him, it's glorious. He is getting very good at saying please, thank you, excuse me and you're welcome without prompting.

When we had Mr N's evaluation about a month ago they asked about stringing words together, at the time he was only stringing about 3 words together occasionally. Now he is stringing 5-6 words together much more frequently. We have been very impressed by his progress recently and look forward to seeing more of it. Since he has made such rapid progress we decided (the development center and us) that we would wait to start therapy at the beginning of the school year instead of starting him in the extended school year program. I'm super excited about his IEP and the way it is written. They left a lot of room for flexibility and expanding goals. I have no doubt that his progress will only continue.

E will be starting Kindergarten next month and couldn't be more excited, she plays Reading Eggs every day because she is determined to be the smartest kid in her class. We've bought all of her school supplies aside from a backpack and she is thrilled to be starting school. She loves to use catch phrases such as "it's hot as a whistle" or "I'm razing mad". She does not use them correctly 90% of the time which makes it even cuter.

I have to go finish putting in my flower garden so I'll keep this short. I will try to sneak on Daddy's computer more often to update.

Cheers

Links and Sharing

It's been a while since I linked to any articles that I found inspiring or beneficial, so I thought I'd give that another go.

Yesterday I came across an article linked on another board I frequent that has nothing to do with autism or children but people post inspiring stories from time to time. This one touched me so deeply, the mother truly went against all advice given by "experts" and listened to her instincts. Her devotion and dedication to her son and his future is what being a parent is all about. Having a child with autism, I can certainly understand her hesitation to continue with therapy that seems counterproductive and even harmful. I have worried endlessly that my decision to stop processes that were in place would have a negative effect on Mr N or that it would make his future more challenging. Reading a success story is encouraging, inspiring and feels like a pat on the back and reassurance that we are making the best decisions for our son. In case you missed the link above, here it is again. http://abcnews.go.com/US/autistic-teen-working-astrophysics-phd/story?id=19283078#.UakhqpyJl8F

On a completely different subject, I saw this blog in my Facebook feed, which is beneficial information even if you don't have kids. There are how to instructions for carrying an adult, too. The blog was posted after the Tsunami in Japan, but after the recent tragic tornadoes in Oklahoma I figure it is good information to know. This picture touched me.

Here is a family who has been displaced by the Tsunami and earthquake, the destruction all around them a painful reminder of what has been lost. Yet the mom has her baby strapped on her back, is making dinner, doing what need to be done to provide her family sustenance. The look on the baby's face is not of fear or terror, she is watching and learning, unaware of devastation in her life. Baby girl is just watching intently, completely safe and protected by her parents. Amazing how quickly we adjust from "WTH just happened?" to mommy mode.

The blog shows how to do emergency baby wearing techniques for emergencies such as a tsunami, tornado, flooding, really any situation where you may be required to carry a child or another person. Most babywearers have multiple devices always at the ready with plenty to chose from in such an event, but for non-babywearers it might be a bit more challenging to figure out how to transport someone if they were injured while hiking.

Amazeballs

First off, I'd like to apologize for the length of time passing between each post. I sincerely hope in the next few weeks we get settled into our new house and routine, then updating my blog will be easier to do on a more frequent basis.

I have nothing but pride and amazement at Mr N lately. He is truly astonishing and mind blowing. We haven't began services here yet, we still need to do a full evaluation for him to see what areas he needs help. It was scheduled for yesterday but sickness forced us to reschedule.

Recently Mr N's vocabulary has been expanding rapidly, using 3-4 word sentences, using words like me, mine, my, and I. Yesterday he said "help me" and even when he says "thank you" it's much clearer. I'm quite sure that every day I say to Daddy "omg do you see how much more he is talking" it's really quite astounding.

I couldn't be more proud of my little man, he has really flourished. We still have our struggles, but seeing his obvious progress is so encouraging and reassuring.

On Friday May 17 we went to Glendo Reservoir to camp with two of my brothers, their wives and kids. My mom accompanied my eldest brother to surprise the rest of us. I was curious to see how Mr N warmed up to the family, he did remarkable. Playing with his cousins, riding in the bike trailer, playing in the lake, etc he did great.

Our camping trip ended a day early when we got rained out, so we headed for a hotel in Loveland, CO. We stayed there one night before dropping Daddy off at the airport (he spent the week in the office) then started our road trip to Kansas, with Grandma in tow. We arrived at Grandma's house on Monday evening, Tuesday we did some preaching with Grandma then spent the afternoon playing at the park. Wednesday we went to visit my Grandma, my friend Jessica, then to visit my brother, sister-in-law and their two kiddos. Aside from a small freakout at Great Grandma's Mr N did quite well with the eventful day, which included lunch at a restaurant, a quick shopping trip to get toys for his cousins, and a couple of hours at the park with Jessica.

Thursday we headed to meet my friend Chelsey and her gorgeous 3 y/o Jaxon for coffee at the park. It took a bit for the boys to warm up to each other, but once they did they played well together. Meanwhile, Grandma spoiled E by taking her on the train ride. We had lunch then met some more friends with kids at the Topeka Zoo. It was Mr N's first trip to the zoo and E had only been once when she was 6 weeks old. Again, Mr N did quite well considering all of the friends we met up with hadn't met him before. He immediately became friends with Ezra, Cai and Trager peering in at the sleeping tigers was the highlight of his day. Grandma got the kids food to feed the animal in the petting zoo and pulled them around in a wagon, probably exhausting herself beyond belief. We ended the afternoon with more playing in the park with more friends whom I hadn't seen in years. That evening we had meeting at my mom's congregation, Mr N did quite well with a little talking the first 30 or so minutes before I had to head outside with him. After meeting we hit up Sonic for ice cream cones with some more friends and the kids played with their newly acquired cars on the patio area.

Friday morning we packed up and headed back to Denver to get Daddy from the airport. We ended up leaving a bit earlier than scheduled which left us with a few hours to kill before Daddy's flight arrived. We stopped in Russell, KS to peruse Alco, it's been 11 years since I lived there, so it was kind of fun to show the kids the town. Another stop was in Colby, KS where they have a great little gas station with Starbucks, Qdoba, souvenirs, and a great fenced playground. We spent an hour there eating lunch, drinking coffee and playing in the wind. We continued our journey to the airport arriving just as Daddy was exiting. Then we headed to Pueblo, CO to spend the weekend with my dear friend Susie.

At this point, I figured if Mr N was starting to fall apart we could always end our trip early to head back home. But he did amazing with all of the traveling, visiting, meeting new people, and staying in various places. We stayed at Susie's until Monday morning then began our trek home. Mr N loved Susie's dogs and cats which he expressed by laying on them at any given opportunity. E surprised me a bit, too. Last year when we visited Susie, E barely played with Addison, she got along better with Noah. But this time E and Addison were the most inseparable five year old's ever. Leaving was quite hard, especially for E. When she realized she didn't want to stay there by herself, she begged to take Addison home with us. Knowing Addison would be sad without her family, she soon gave up that notion and resigned to begging us to take her to see her cousins in Sheridan.

The drive home was mostly uneventful, we stopped back in Loveland, CO to retrieve the keys I inadvertently left at the hotel, grabbed food for the crew and sinus rinse for mommy and daddy.

In ten days of traveling, staying at four different places and Daddy being away, I think we only had one major meltdown from Mr N. We have spent the week recovering from illness, dealing with craptacular weather and cranky Mommy, but Mr N has taken it all in stride.

I have to admit, I thought I might be biting off more than I could chew by cramming so much into ten days, worried that Mr N would have multiple meltdowns, concerned that he'd regress, feared his progress would stall; however, just the opposite, he has progressed tremendously over the last 2 weeks. Seeing him grow so much so quickly is truly amazeballs (it's a real word)!

Changes

Once again I spent the meeting in the car fighting back tears. Every meeting when I tuck my tail between my legs and hide in the car I feel like I'm failing. I try to remember that it took many, many months in our last congregation before Mr N could spend more time in our seats than in the car. While I have no intention of giving up, it is overwhelmingly difficult to continually struggle through every single meeting. It is incredibly exhausting emotionally and physically.

Along with Mr N's struggle to adjust to our new life, I've been having a hard time acclimating, too. I've lived in five different states in the last dozen years, moved 22 times, yet I'm not adapting as quickly and easy this time. I find myself unable to immediately recognize my surroundings, uncertain as to what our surrounding towns and appropriate landmarks are here. This morning as I went to get out of the shower I couldn't picture what was outside of the shower, and where to locate my towel. Several options of bathrooms in homes I've lived in before flashed through my mind before I got to our current bathroom. It has never taken me this long to adapt and become familiar with a new place.

I have to wonder if our intentions to live in our last house permanently has effected my ability to adapt beyond that. We had so many plans and goals for our lives there that went unaccomplished (i.e. hike to the top of Half Dome, finish the house, do wilderness camping, etc). I find myself thinking we should do things like go to Knights Ferry, attend the Sonora Parade, visit Yosemite, etc even small things like which stores are available in our locale, I seem to get confused as to what is here and what was there.

I really miss my old congregation, I miss the familiarity of my friends, I miss the understanding and encouragement that was expressed so freely, I miss the familiar names and faces. Not that I'm not provided with abundant encouragement and commendation for my efforts here, today after meeting I had several people tell me that they appreciate my efforts and that I'm doing a great job in spite of the circumstances.

This isn't to say I'm unhappy with our new home and new life, it is unexpectedly amazing. Once I start making friends I'm sure I'll have that same love and joy I felt in our last congregation. Being able to see my dear family multiple times a week is better than I had ever imagined. But I miss being able to drive a couple of hours and spend some time on the beach, I miss having the familiar Stanislaus National Forest and Yosemite to explore.

Being here for over a month without completely adjusting is new and unfamiliar for me. Going into the move i knew Mr N would struggle to adjust but experiencing it takes the heartache to an exceptional level. I have no regrets regarding the move and our decision to do so, it is absolutely the best decision for our family.

Along with having a support system here, we have excellent recreation opportunities right in our backyard. There is a 12 mile walking trail through town that runs along the creek and up to the foothills and out into the plains east of town., there are beautiful mountains that continually take my breath away, there are hundreds of acres of public use land for hiking, shooting, camping, etc. This area is absolutely amazing, I just really wish my mind could wrap itself around this being home. Maybe once we are out of this short term rental and into our new house it will become more real and permanent.

I must wrap this up as I need to round up our camping gear for our plans to go camping next weekend with my older brothers, then later this afternoon we plan to hang with the family. Busy, busy and fun, fun, fun.

Struggles

While our new life in Wyoming is fun and exciting, there are still many struggles. Mr N has not adjusted to the new congregation yet. The first Sunday we had to sit in the back room, which is a recipe for disaster. I will admit each meeting has gotten progressively better. Last night we spent about 20 minutes in the auditorium in our seats, then another 10 minutes standing at the back before heading out to the car. We didn't get to attempt a re-entry before we headed home.

We had a meet and greet with the development center last week where we went through a few questionnaires and they observed Mr N for a bit. Yesterday we had a more in depth evaluation, which didn't go super well. Mr N was not cooperating much at all. Most of the evaluation was done through another questionnaire. But he did do a couple of things for the lady. I'm nervous and excited all at the same time. Will he actually do well here or will it be more struggles and frustrations?

He has been improving with his peer play when with his cousins. Mr N is spending more time actually engaging with his cousins and less time playing by himself in a separate room. However, he really needs to understand that he can't hit people when he gets frustrated and upset. He hit his sweet little cousin Ky the other day and it still bothers me. I want him to be appropriate, I don't want to worry about letting them play together, she's so little and tiny, I'm afraid he's going to break her sweet little self.

This morning we are heading out in the ministry for the first time here, I'm hoping that getting to know one or two people at a time will help Mr N warm up to them and be better at meetings. Now I must go wake the sleeping princess and finish getting ready for our morning. 

Cousins

We've been in Wyoming for two weeks now, it has been an incredible adventure thus far. We have been settling into our tiny home while house hunting with much excitement. We try to get out as much as possible exploring our new town and surroundings. We head to Sheridan a couple of times a week and let the cousins play. I have dreamed of the kids growing up with their cousins for years and having it be a reality is even better than I had hoped.

The kids all get along very well, E gets along with the JW and JJ and plays well with them, but also joins in with Ky and does girly stuff with her, Ky loves having another girl to play with. Mr N is viewed as a "baby" by JW & JJ, so we are going to have to work a little harder to get him incorporated in their play. But he does play well with Ky. When they were at our house the other day Mr N and Ky were playing with the dollhouse, they would do something then look at each other and laugh hysterically. It was most precious.

Of course, being close to my beloved sister-in-law is quite delightful, we still spend hours on the phone together every week, but seeing her in person every week is absolutely amazing. It has been years since we lived in the same area, before either of us had kids. The kids getting to know each other better is ideal for all of us. I would remiss not to mention how great it is to see my big brother more than just occasionally. Playing board games, having dinner, going to assemblies, etc with my brother and his family is truly a delight. Making plans for summer camping trips with our oldest brother is exciting for us all. This is the closest we have all lived to each other since my oldest brother moved out in 1997. Good times ahead for all.

Yesterday we had Mr N's meeting scheduled with the local Child Development Center; however, a spring snow storm prevented the coordinator from being able to travel from Sheridan so it is now rescheduled for Friday. I'm really looking forward to what they have in mind for my little man. In our previous conversations it sounds like their program is much more in line with our hopes for Mr N.

Mr N's speech is still improving at a pretty good rate, he obviously, is still severely delayed but he is saying new words on his own and stringing more words together. Last night I was holding him and talking to him and he watched my lips then imitated the way I moved my mouth to pronounce the words. I've also noticed that he is improving the ending of words, he still drops the final consonant if it ends in a consonant. For example, if he says dog, cat, dad, the final consonant is dropped, but if he says baby, daddy, mommy, kitty, doggy he says the word much better and pronounces the last consonant before the y. Hopefully all of that makes sense.

I gave Mr N a much needed haircut yesterday, which is the equivalent of torture for him. But yesterday he didn't even scream or cry when I got the clippers out, he held his head still for me as I started and didn't start getting upset until I was almost done. The crying didn't ensue until I was completely done and cleaning up all of the hair, the bath that followed caught most of his tears. 

The Big Move

This was hardly my first move across state lines, but it was for my dear Mr N. He typically does quite well on road trips so I was anxious to see how the move would effect him. We planned on leaving Thursday evening when Daddy was done working for the day, all went well that rainy miserable Thursday morning and afternoon. E and I went to have coffee with some dear friends before our departure, we packed the last little bit of stuff, we dropped some stuff off for recycling, loaded the family up into the vehicles and pulled out on our long awaited, much anticipated journey.

We made it about a half mile down the road before it was quite obvious the trailer we had purchased was not up for the job and the Jeep was not going to be able to tow the very overweight Trailer. We navigated a u-turn and headed home. We all hopped into the Jetta and ran to Sonora to rent a uhaul, I said a prayer made a few phone calls, posted on Facebook and hoped help would come. The kids and I returned home while Daddy took care of the paperwork at uhaul, I started unpacking the trailer so that we could be a few steps ahead when Daddy arrived with the uhaul. Daddy arrived with the uhaul and trailer to tow the jeep and a few minutes later our friend Tracy showed up to help watch the kids, she had her grandson with her so double bonus for the kiddos. Twenty minutes later our amazing friends Nathan, Ruthie, Sam, Hannah, Jordie, and Heidi showed up and quickly got the uhaul loaded. We are so incredibly thankful we have such great friends, which made saying goodbye so much harder.

We set out again for our lengthy road trip and made it about an hour outside of town before stopping for the night. This old gal was bushed. We started out bright and early Friday morning and made it from Angel's Camp, CA to Evanston, WY. Our goal to hit Wyoming was realized and made E very happy. She was very anxious to get to Wyoming. Somewhere in either Utah or Nevada Mr N did his very first roadside pee break, I couldn't be more proud of my little man. I wondered what he would think and how he would adjust to an impromptu pee break with no potty, but he nailed it! I'm now certain that our summer camping adventures will be no issue.

Saturday morning we began the last leg of our journey, enjoying our very first sunrise in Wyoming. We arrived in Sheridan at my brother's house at about 11:30am Saturday morning and the kids were all excited to see their cousins. The adults desperately tried to find us a new home, after calling several places for rent we nailed down a showing for Sunday afternoon.  It was not ideal or even doable so Daddy and I decided to drive down to Buffalo to check it out and then drive back up the old highway to Sheridan and look for places to rent that might not be advertised. As we drove the Buffalo I convinced Daddy to stop at the house I've been eyeballing for weeks so that I could peek in the windows. I got busted....

A realtor was riding by on her bicycle and asked if we were looking for a place and we explained that we really wanted a place to rent month to month so that we can buy a house without dealing with breaking a 1 year lease. Coincidentally she and her husband were riding their bikes to their rental property to take pictures so they could list it as it just emptied out the previous Friday. They allowed us to look at it and we snapped it up. Monday morning we signed the paperwork and moved in, got a storage unit and put the rest of our stuff there.

It's been quite the journey. Mr N has done great with all of the changes, he loves playing with his cousins and warmed right up to my brother and sister in law. He was a little on edge the first couple of days at my brother's house but once we started unpacking stuff at our new house he really calmed down and has been doing great.

Yesterday we got Internet, phone, and TV hooked up. This is the first time we've had cable since we lived in Modesto almost 2 years ago, and we never really watched it there. Yesterday when the TV was first on E was so excited and kept saying "we have hotel movies".

Decisions, decisions, decisions - penned 1/23/13

I still do not have much to update, we haven't heard anything back from the school. I'm a little frustrated by the whole thing. Why does getting my little man the help he needs have to be so difficult and exhausting? We have considered relocating to ensure that Mr N gets the help he needs without such a burden on us. I called and spoke with the director of the preschool services in an area we are considering. Actually, I called and left a message, dreading the wait for a call back. Surprisingly she called back within a couple of hours. She was very helpful, explained the services they provide for 3-5 year olds and how all of the teachers in their preschools have their masters in early education, each school they serve is equipped with a speech pathologist, occupational therapist and physical therapist. In order to get him started we would merely bring his current IEP, his records and paperwork.

I'll be honest, I was completely floored by her response, I fully expected her to say they are short staffed, under budgeted, etc and that I should look elsewhere. I did not expect her to encourage us to come there and that they would love to have Mr N. I expected the same kind of procrastination and deflecting that we receive here. We've been told by people here that if we really want services we would be wise to move to other areas (out of their jurisdiction). Seriously? No wonder California has such poor reviews for autism services. Of course, I doubt every regional center is the same but they do not inspire my confidence in them when I'm expected to leave my very precious child in their very nonchalant hands.

Relocating involves so many variables, it is such a stressful thing to contemplate. For one, we just bought our house a year ago and we haven't finished remodeling. So we would be forced to sell a partially renovated home, in a less than ideal housing market. Second, we have to consider that Daddy may not be able to keep his job, that he loves. How do we deal with that? How does one go about requesting that their company allow them to relocate across the country, but keep their job? If that is not allowed, how could Daddy possibly find a job that he enjoys as much as this one?

Having a child with special needs certainly requires various sacrifices to insure the best possible future for the child, but choosing what to sacrifice is so very difficult. Do we sacrifice job? Do we sacrifice location? Do we sacrifice sanity?

My little man has so much to offer, so much progress to make, he can go places, but he really needs his therapies. I've seen what he can do, I've watched him make huge strides forward, I've seen struggles fall by the wayside as he moves forward. I don't want this to be his ending point, I want him continually moving forward, I want to see further progress. I want to see how far he can go. I have high hopes for him, but he can not do it without help.

I have spent countless hours praying for guidance and direction, hoping the path for our future is revealed giving us confidence about our decisions soon. The uncertainty of our future has become a major stressor.

Right now Mr N is crawling around with his head pushed down on the floor. I have to laugh, because when we were kids we used to love doing that at my grandparents house. I'm not sure why we only did it there, but we did, up and down the hall for hours. Mr N's pretend play has really been increasing lately, pretending to be a cat or dog with his sissy, is one of their favorite things to do.

Dentist Day

Today was the dreaded day at the dentist. Well the kids didn't dread it, E was excited about going and Mr N didn't seem to mind much.....until we got there. He actually did pretty good until sissy went back and started having her X-rays done. Then he opted to go into full meltdown mode, no number of TVs, toys, balloons or nice people were going to get in his way.

E did great with her X-rays, cleaning and exam, she doesn't have any cavities, which is a relief.Mr N only got an exam while sitting on my lap, but at least the dentist got to look at all of his teeth and said everything looked good. After they finished up Mr Ns exam I Headed outside with him while our friend Jessica stayed with E to have her exam done. He didn't want back in the car, so we stood outside and hugged for a bit. I fought back tears windering if I'd ever be able to understand what bothered my precious son so much. Will he ever be able to express his fears and worries? Will I always be near tears as we leave any kind of appointment for him? A simple dentist appointment should not be so emotionally exhausting.

Hopefully we can find another great dentist when we move and Mr N will eventually get used to him and make things easier down the road. I hope I'm not expecting too much. I'm so optimistic that speech therapy will enable Mr N to verbalized his fear and enable us To better calm and help him.

Moving forward

We finally did the IEP for Mr N last Thursday. The plan in place is 5 hours a day 5 days a week in a secluded room at the preschool with one on one time with Mr N and an aide, 30 minutes of speech therapy once a week and 30 minutes of OT once a week. This isn't exactly what we were looking for, we feel that Mr N would benefit more from being around his peers on a daily basis. But we anticipated them not being able to provide us with what Mr N truly needed and have been looking at areas to relocate, in order to get Mr N superior services and find a school that we feel comfortable sending our children.

Finally, we have determined the best location based on our needs, getting Mr N the services he needs, having a support system, decent schools for both E and Mr N, plenty of recreational activities we enjoy and closer to all of our family. We found out Thursday that Daddy was approved to work from home so that we could move. We are beyond ecstatic, so happy that Mr N will finally progress and grow into the amazing little man that we know he can be. We will be moving in three short weeks to wonderful Wyoming and we couldn't be happier.

I've already contacted the development center in Sheridan to expedite the process and get Mr N services upon our arrival, they've been very friendly and happy to help us get the process started. I've been amazed at how willing they have been to start the paperwork. It's been a completely different experience from working with the school district and regional center here. I'm optimistic that it will continue to be a positive experience.

Leaving behind our beautiful mountains, rivers, and waterfalls will indeed be a sacrifice. It's hard to imagine not living in the pines, mere miles from a national park, national forest and hiking trails. However, our little man's future is dependent upon him getting help now and his progress. As a parent, there is no sacrifice I'm not willing to make to ensure my child has a healthy, happy future.

Another day another poop

Mr N has done amazing with his potty training. He has an occasional accident, but not many. He hasn't had any nighttime accidents, and so far none in the car. I've been blown away by his progress, anytime we started to potty train before he would have several accidents a day and it would be a matter of hours before he was back in a diaper. I guess he knew he was ready when he took that diaper off a few weeks ago.  He has come so far in the last few weeks, he now will go potty, wipe and flush without letting me know.

Enough about potty training, I'm guessing not everyone wants to read about peeing and pooping.

I've tried without success to get Mr N to say his ABCs, they are not as easy as counting to ten. We have tried watching LeapFrog Amazing Alphabet, Baby Einstein, we've tried saying them, doing the alphabet LeapFrog magnets on the fridge, but have gotten nowhere. Yesterday we were picking up toys, when we got to the blocks with the alphabet on them, I had Mr N put them away. I handed them to him one at a time starting with A. I got him to say several letters before he tired of it. But successful it was, I will attempt it again and again until we have success.

We still do not have a nailed down date for the IEP, the school called Wednesday to see if we could do it yesterday, but both kids are sick so we have a tentative date on the calendar for next week, but he is checking with the other invitees to see if it works for them. More waiting, more delay.

Patience

It's not my thing. I am not good at it, I do not like it. I want it and I want it now. Okay okay, I'm not that impatient but when waiting is producing negative results, then my patience grows thinner each day. As my wise mother texted me "have a drink and trust in God", so wise that one.

I get that suggesting patience is supposed to be encouraging and supportive but it is so hard to be patient when each day without services for Mr N is one day further delayed. How can I be patient when my baby is falling further and further behind one day at a time?

He qualified for speech therapy a year ago, but that never happened. Even if he only progressed by 6 months in the last year that would be 6 months further than he is now. But nope, instead he is 2 years delayed at this point. How much further do we let him fall behind before we do something drastic? I can't take this!

I got a call from the school today that they can squeeze an IEP in on the 27th at 1:30 for Mr N. Of course, we aren't able to make that time/date work and they didn't call back before the end of he day. So next week I'm sure they will try to reschedule for the following week. There is three months of school left, once again I get the feeling they are trying to procrastinate long enough that they don't have to do anything for this year. Saves the school money not having an extra kiddo to provide services for this year. I mean the regional center successfully avoided providing speech therapy for an entire year so they could push it off on the school. I'm starting to understand why so many parents have to literally sue the school district to get services for their child.

What the hello kitty is wrong with these programs that they don't realize that the more money and services they provide at a younger age the less programs they will need to fund later? Isn't that the point of early intervention? It is the key to success. If you have a 2 year old that is 6 months delayed, then getting the right services and he/she will be on track by the time they are 4 or 5. But they seem to think it is better to deny services and only provide the minimum so that by the time they are 4 or 5 they are so severely delayed that they will require additional services all the way through grade school and into junior high. And really if they aren't on track by junior high, there can't be much hope that they will be on track for high school and will continue to need additional help. There is little surprise that there are so many programs for adult services when the early intervention programs are so severely lacking. Do they not see the correlation?

In case you haven't figured it out, I've lost my patience, I'm pissed off and ready to rumble. Douchebag McGee should be glad he didn't return my call today, because I probably would have unloaded on him.

IEP Cancelled

Yesterday we had an IEP scheduled for 10:30am, which was cancelled promptly at 10:17am. They like to give plenty of advance warning when there is a cancellation so you don't completely rearrange your schedule to accommodate the request. [That is what we call sarcasm.]

During the cancellation phone call, the school psychologist said that he would like Mr N to start receiving in home services until the program at the local school is set up. The agency should be calling me to set up the services with a start date of February 19. Based on previous experience with the company, I will expect our first phone call on the 19th and services scheduled to begin in March. I'm not trying to be a Debbie Downer, but reality is easier to accept than blind optimism with nothing to base it on.

If you ever have checked out autismspeaks.org and looked through the list of best/worst places to live if you have a child with Autism, you'll see California high on the list of worst places. This does not come as a surprise to me. Undertrained people providing partial services with large gaps of service does not bode well for their reputation. I happily expressed my dissatisfaction on the lengthy survey they requested we complete.

Potty training is still underway. I'm pretty sure that I'll be receiving a gold star later today signifying my great accomplishments. Four days of diaper free living, and I haven't given up. That is gold star worthy by all accounts. But seriously, he's doing great, aside from a few accidents. He requests to use the potty and has even worn his undies.

Since I'm sure my post won't show the exact time I posted, I'll go ahead and tell you, it is 5:37am right now. The sun is not up at all, it's quite dark actually. I guess my body has given up on sleeping, even though the contract states that the sleeping schedule can not be changed, altered or in any way adjusted without my written, notarized consent. I did not consent to waking up at 3:00am.

Please note, my lack of sleep explanation was to excuse away the mindless ramblings above and below. Oh did you think I was going to stop typing now?

Thursday we went to Sonora for our weekly grocery shopping (we gave up on the monthly shopping in Modesto as it was so exhausting no one likes Modesto). On our way we met up with Katee to return the toys and such that were left at our house when therapy ended the beginning of December. Mr N was happy to see her and insisted on getting out of the car to say hello. Our shopping trip was quite uneventful, we returned home and had lunch then the kids started playing. That ended abruptly when E mashed her face into the wall resulting in a busted lip and lacerated gums above her two top right teeth. We quickly loaded back up and headed back to Sonora to the dentist for an emergency exam. Her gums looked pretty rough and I couldn't tell how bad her teeth were injured. E did great, she had a couple of x-rays done, then an exam by the dentist. She was brave and not scared at all, I was quite relieved. Daddy met us there to assist since doctor's offices are typically meltdown city. But Mr N fell asleep on our way there and slept the entire time.

While at the dentist office we scheduled regular checkups for the kids for a couple of weeks later. It's a super kid friendly dentist office, so I'm hoping that Mr N can relax and get examined.

Potty Training

I hate it. It's messy and frustrating and I'd like to avoid it for as long as possible. Mr N apparently has other plans. Yesterday morning he took off his diaper and refused to put it back on. So every hour or so I put him on the potty, until I got busy and distracted. He did have one accident, but he also told me "potty" one time when he needed to go, and another time he pointed to his butt when he needed to poop. Not too bad for day one.

He stayed dry through the night and slept without a diaper. He did have 2 accidents today when we were outside and there was a lot of distractions, we had the carpet cleaned today and some trash hauled off, so I wasn't paying enough attention to the time. Twice today he has indicated that he needed to go potty once by saying "pee", the other times I asked him and sat him on the potty.

So far I would say he is doing quite well with this whole potty training thing. The only problem so far is that he refuses to wear underwear, I think the elastic is bothersome so I'm going to be hunting for some less irritating boxer briefs or something more comfortable. Until then, he can go commando, all the cool kids are doing it.

Meeting went off without a hitch, he went sans diaper and there were no accidents.

Counting

First off, I'd like to apologize for the lack of recent updates. I just struggle figuring our what to write about during our wait. But I have a few things to share!

1. I've been really wanting Mr N to count, I feel it's an important skill to have. He routinely counts along with me or sissy or with the Numbers Ahoy movie. But getting him to count his fingers or just say his numbers hasn't really been happening as much. Well last night laying in bed I was going to show him how to count my fingers but as soon as I said "one" he counted his fingers on one hand. He hasn't figured out how to do both hands. Today, he wanted something in the kitchen and he was waiting for me to get it and he was talking while I was getting whatever it was and when I handed it to him I realized he had just said "nine". I looked at daddy and he said "he just counted to nine". I was floored. I was so caught up in gettng him something that I didn't even notice he was counting. We laughed because we think he was showing his patience or impatience with me while I got him food.

2. Last night during meeting as I struggled to keep Mr N quiet and in my lap it dawned on me that meetings are really the only place he has troubles. Grocery shopping has become pretty normal and easy going (as long as friendly shoppers don't invade his space). I realized last night that it's possibly the length of the meeting that is causing him trouble. He typically does pretty well the first 20-30 minutes and sometimes longer. I think he can regulate himself pretty good for that amount of time then he starts to get overwhelmed, antsy and frustrated. I'm going to try a few different things at our upcoming meetings and see if we get some improvement.

3. I don't really have a 3 but you can't have a list of two. Katy called today, she is going to stop by tomorrow and return my book and pick up the therapy tools. I told her about Mr N's progress since she's been gone. She was excited to hear all of his forward progress. She was super impressed with his counting to 5. He didn't count to 9 until after I got off the phone with her, I can't wait to share that with her. I told about his improvement socially and verbally. His more frequent talking and pronouncing things. Sometimes I just don't think I pay enough attention then I realize he's said something so clear   He is also using different types of language. He is labeling, requesting, and I'm not sure how to describe the last one. But he will say phrases like "good morning", "wake up", or "let go". I wish I could think of more, I need to start writing down his words again to see where he is at verbally.

McCranky Pants

There are good days and there are bad days. Today is a bad day. Mr N has been a cranky pants since the minute he woke up. He woke up fussing and clingy, he didn't want breakfast, he just wanted to fuss. After getting him settled down with some water I hit the shower, only to be greeted coming out of the shower to more crankiness. The crankiness finally subsided after lunch, but not before putting me on edge. How could such a small child possess so much cranky?

He has been pretty happy and content for the last hour, I'm de-stressed and relaxed now, but still anticipating more cranky. Now that I'm not frustrated trying to figure out how to make the screaming and crying stop, I wonder what caused the turmoil today? I checked his temperature, checked his lymph nodes, changed his diaper, offered a variety of foods and drinks, gave hugs and cuddles to no avail. Does he hurt? Is it his tummy? I wish I had the answers, I wish I had the cure. I wish I had more patience when he is acting like that. Once again, I'd like to have an easy button.

Cuddlebug

I promise you will never find a child more cuddley than Mr N, he is the best cuddler. He so soft and squishy and cuddley. He is so sweet and beautiful. Lately Mr N and E have been engaging in a ton of imaginative play together, I love it when he is sweet to her. He doesn't seem to be in his own little world anymore, he is right here with us a majority of the time.

E has discovered the handiness of having a strong man around the house and frequently asks Mr N to help her with things that are too heavy. It's absolutely adorable seeing him lug some heavy thing around for his sissy. E has been quite loving towards Mr N lately, too. She will cuddle him in the couch and scooch up close to him. They are both much better about giving each other hugs and kisses, not just when apologizing.

It's like a few baby steps have us so much further down the road. I love any progress at this point, I'm anxious to see how he will do with some speech therapy. The one thing I've been fighting to get for over a year. I'm tired of waiting.

I saw this article the other day, I was surprised and so happy to see that there are still some decent people out there. I've read a few gazillion stories of special needs kids being ridiculed, bullied, abused, refused service, etc. so reading a story in their favor was heart warming. Our special littles need people to stick up for them, they are humans, they deserve respect and dignity, just like every one else. They are amazing, beautiful people with so much to offer, more people need to recognize these precious gifts.

I am so incredibly grateful for my beautiful little family, I never thought I'd be so blessed.

Disclaimer: cuddley is not a real word

Good Morning

Yesterday morning Mr N said "good morning" when he first woke up, I thought I might have imagined it. This morning, the same thing happened, he woke up and said "good morning" to me then patted me on the head and said "wake up, wake up".

We attempted an art project that ended a wee bit messy, apparently seeing an idea on pinterest six months ago does not qualify one to actually do the project. I will have to look it up and start again, up until things got messy the kids thought it was great fun, though.

The kids spent hours yesterday shredding a roll of wrapping paper, who knew that could be so entertaining? It was nice that they were busy for a while so I could get some stuff done. Picking up 6 billion tiny pieces of wrapping paper, on the other hand, wasn't quite as nice, but they were good little helpers and assisted in the clean up.

I got a call from the school psychologist on Wednesday, he met with the superintendent at the preschool and said he would present it to the board. The board meeting was Thursday, Friday the psychologist planned to visit the school to see what he had to work with. I expect to hear back early next week. Hopefully Mr N will soon begin receiving services. I'm still quite nervous about the thought of him going to school, but we will see how it goes. 

One year

It is amazing the difference a year can make in our lives.

One year ago we didn't have an autistic son.

In the last year we have come so far, we got the autism diagnosis, endured blood tests, EEGs, ruled out various health issues and discover others.

We've seen huge progress in Mr N's social abilities, speech, sensory needs and his eating. As a mother, I have learned so much, I have hurt so much, I have rejoiced and loved more deeply than I thought possible. The more Mr N progresses through our efforts, the more confident I am in my parenting. Today, my little superstar counted to ten (with some prompting).

I started this post a couple of weeks ago then ran out of words. The last few days have proved insightful. Friday afternoon we had someone over who had been to our house in August to clean our carpets, he is a friend in our congregation and we see him a couple of times a week. When he arrived on Friday, Mr N greeted him at the door and was very chatty. Our friend was quite impressed, within about 5 minutes he was expressing astonishment at Mr N's progress. He went on and on about how much progress Mr N has made just since August, he commented that you wouldn't even know it was the same child.

Mr N got his ball and invited our friend to play catch with him, he said quite a few words while they were here, and we discussed Mr N's progress. He has a nephew with Autism, so he does have some experience with it. His nephew is very high functioning, drives a car, has a job, etc. So hearing from him that he thinks Mr N has made tremendous progress was great.

On Sunday Daddy accompanied us to meeting, and Mr N sat quietly on his lap for about the first 45 minutes, which is a pretty lengthy period of time for him. After meeting Mr N greeted several people, gave out high fives, fist bumps, and hand shakes. He also went up to several people, got their attention, then pointed to Daddy and said "daddy". He was quite proud to show off his Daddy.

Sunday evening we went over for dinner at the house of the friend mentioned above, most of the congregation was there. The kids and I were at their house before for a clothing swap, so they were familiar with it. They both had a lot of fun and were quite friendly with people. At one point, I came out from visiting with a friend in the kitchen and didn't see Daddy and the kids so I went searching but couldn't find them. On my second swing through the living room I noticed E cuddled up in a chair with a couple. She told me where daddy and Mr N were, so I went and checked on them. Mr N had discovered a trampoline in another part of the house and was getting his jump on.

After Daddy and Mr N returned to the living room Mr N joined E in cuddling with the couple on the couch. I was pretty blown away, while he has been better about people touching him, cuddling with others just isn't something we've seen before.

We headed home around 9 and discussed Mr N's progress on the way home. A year ago we attended a similar event at another house, with about the same number of people. Only last year Mr N hid in a bedroom for most of the evening and keeping him from losing it was a daunting task. He eventually came out from hiding and ran around a little bit, but didn't interact with anyone. Looking at the difference in behavior from a year ago, his progress is astounding. Last night he let people pick him up and play with him, let people tickle him, gave high fives, fist bumps, hand shakes, he ate pumpkin bread, cuddled with people, was more than an inch from mommy and daddy, and was not freaking out all night. It was such a beautiful sight.

He also had the opportunity to play with a couple of puppies, I was observing from across the room, but ready to intervene if Mr N got rough, I totally expected him to hit the puppy or push it, I expected inappropriate behavior with regards to the puppy. But that I did not see. He petted it gently and when puppy was ready to go to bed for the night, he kissed it gently on the head and said nigh nigh. However, Mr N wasn't done with the dogs and convinced someone to let him play with them more.

Last week we went to Irvine again with Daddy for a meeting he had for work, Mr N remembered the hotel and tried to first go to the same room we had last time. I took the kids to the beach while Daddy was at work, it was only 65 degrees so the kids were not allowed to go in the water, but of course they still got their feet and pants wet. Mr N absolutely loves the ocean, watching the waves come in, running away as they get close, he had a great time.