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.