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.