Thursday, December 15, 2011

Decisions, Doctors and Details

   It has been way too long since I have been on here and posted what has been happening in our world, so I'm not even really sure where to start. Life, needless to say, is pretty crazy right now with the Holidays and has been pretty unpredictable lately which makes it very interesting too.

   Judah has been adjusting much better to school and is doing great according to his teachers. He still has the daily meltdown when I drop him off and struggles with the separation anxieties quite a bit, but seems to be fine once they can get him up the stairs and in the class room. The one thing I have heard from his teachers and the others at the school is that he always has a huge smile on his face and is so happy. That, of course, makes me happy and I am so grateful for the amazing staff at Kiddie Garden that have been so great with him and helped him grow and learn so much over the past 3 years. Thinking of him graduating Pre-K in the spring and not being there anymore already brings tears to my eyes! Thankfully we still have several months before I have to cross that bridge :)

   He is also continuing Speech and Language therapy at one of our local elementary schools and is doing great with it. He seems to have some good weeks and some, well, not so good weeks. One week his teacher even had to make him "listening ears" to wear, but they didn't even seem to help. They became more of a toy than a tool :) One of the huge benefits of the therapy is that we have seem a huge decrease in the number of emotional meltdowns he was having and an increase in expressing his emotions through words. One of the funniest times was on Halloween night. Our family has a family owned and operated Lock and Security company and participate every year in a local event called "Boo in Boonville". We set up in front of our shop and pass out candy to the hoards of people that come by. It is a lot of fun and Judah has always helped pass out the candy to a small degree in past years. This year he announced that he wasn't going to be scared of the kids dressed up (which usually really upset him) and he was going to pass out the candy. He followed through and did great. We did make the mistake of telling him that certain candy (soft candy) was for the smaller kids and the hard candy was for the bigger kids and they could only have one piece. When the evening started he didn't want to give anyone any because they already had one piece in their bags! He took it literally that they could only have 1 piece :) Later and older child asked for a package of the soft candy and Judah looked him straight in the eyes and said "NO, you are too big for that. It's for the little kids" He also wanted to measure every kid against himself for size to determine if they are a "big kid" or a little kid". The best part, though, was when he abruptly got out of his chair and started walking inside for no apparent reason. We stopped him and asked if everything was ok and if anything had upset him. He quickly replied in a very matter of fact tone "Oh, I'm fine. I just need a rest right now. I'll be back in a minute". It was very impressive and adorable, to say the least!

   The one area that he seems to still have the most trouble with is church. Our church has a great children's ministry and staff and I am so grateful for the time and energy they invest in the kids to teach them the love of God and about the Bible! We usually begin every Sunday morning with "I don't want to go to Super Church! (the children's service)"It's not exactly the way I would prefer to start the day, but it is what it is. We did, however, come to a great compromise recently that has seemed to make for a happier day for everyone involved. We agreed that as long as he would go to Sunday School at the beginning of service he could them come in the sanctuary and sit with me during the rest of the service instead of going to "Super Church" which is a culmination of all things most children love and Asperger kids hate. It is loud and crowded with games, skits, music, etc. This compromise has seemed to work really well for the past few weeks and he has even gone into Sunday school willingly the past couple of weeks. Last week his very daring teacher, Ms. Heather, was even able to talk him into going into Super church for a few minutes before it was too overwhelming for him :) At this point I have realized one very important truth: I have to choose my battles wisely and some just aren't worth fighting (for me or him)!!

   On the doctor front, we are making some great strides and hopefully moving in the right direction for him. This fall we made the decision to switch family doctors and have since realized it was a great move for him. Our new doctor has a lot of experience with Asperger's children and has been great with him. We have also been able to change his insurance provider and get a referral to what seems to be a much better facility for treatment and therapies. The one we had been referred to before took over 3 months to just call us about filing out preliminary paperwork, let alone setting up an appointment for him. The new center called us within a matter of a couple weeks and are able to get him in before the end of the year!! It is also on the same campus as our doctors office and comes highly recommended by our doctor and the school corporation specialist. I feel very good that things are finally moving in the right direction for him now and we will be able to get him the resources he needs to best deal with his struggles.

   Finally, the last big thing going on is that we have come to a decision that I never really thought I would come to. Although, it seems so far off right now, we have been looking at Kindergarten options for him and trying to decide the best avenue to take. I had always said that I would never put my children in public school, not because I have anything against them personally, but because they tend to have much larger class sizes and I would prefer that my children be taught academics from a Christian World view. It is all just personal preference. Anywho, I had always said that I wanted to either put our kids in private school or home school them. However, as we began looking at our options we quickly realized that home school and private school weren't going to be able to offer the resources that Judah will need to succeed. It was a shocking revelation to me! As we looked at each option we realized that home schooling would just feed his desire to separate himself and not interact with peers. It just couldn't offer the much needed social skill building that is so important for him. Then as we looked at private schools we realized that while they do have the smaller class sizes, they don't offer the one on one aids, speech therapies, occupational therapies, etc. that our school corporation can offer him. So, a long struggle with the decision (on my part, not Larry's) we came to the conclusion that we will be enrolling him in Public School next fall. Thankfully, we have a great school system here and they have worked as hard to ease my fears as much as Judah's! They have done everything possible to make the transition for him as easy as possible and even offered to let us meet with the teachers before the school year begins to see who will fit best with Judah's needs, tour the school during the summer so it won't be as overwhelming for him in the fall, and anything else we may need to best help him. I am so thankful for all the support they have offered this far and am praying that I will adjust to these changes as well as Judah probably will :) lol

   So, all in all it has been a pretty good few months. We have made some great strides and Judah is constantly growing and changing. We still have bad days, but he seems to be handling them better. We have a very full and eventful Christmas holiday coming up in the next couple of weeks and it should be fun. Next Monday night Judah (and Hannah) will be participating their preschool Christmas program. Judah is going to actually be Santa in it and is even looking forward to it. We are just praying we can make it through all the parties and celebrations without too many overloads and meltdowns and are thankful for Angry Birds and Bunny Shooter on our phones which quickly provide a "quiet time" no matter where we are :)

   I hope you have a very blessed and happy Christmas and New Year. Hopefully it won't be as long before I post another update...




Tuesday, September 6, 2011

Making strides

  I know, I know... It has been way too long since my last post! If you are friends with me on Facebook, you probably know most of what I will say; but if you aren't this will all be very exciting to you - I promise!! haha
  Since my last post so much has happened and Judah has made some great strides as well as faced some new challenges.
  At the end of June Judah began his first year of Bee Healthy Jr. Boot Camp, a 1 day a week camp at our local Community Center that promotes and teaches children about fitness, nutrition and healthy habits. I thought it would be a great way for him to have fun and meet and interact with new kids over the summer... Yeah, I was wrong! In spite of the fact that many of his "friends" from school and other friends were there I had to leave him being help by a camp leader in a hysterical meltdown. Once they got the activities going he would eventually, and sometimes reluctantly, participate. It was just a struggle to get there. We are planning on trying again next summer and hopefully it will go much better. I think the only redeeming factor for him was that he got a t-shirt, drawstring backpack and dvd of pictures out of the deal! haha

   He also took swimming lessons again this summer and did so great. He did inform me before they began that the only way he was going was if "Steph or Sam" (his teachers from the past 2 years) were going to be his teacher and he was NOT getting in the pool if they weren't there. Thankfully they both were! :) He was like a little fish zipping around the pool and looked forward to going down the water slide any chance he could get. By the end they even had him diving for rings and swimming short distances under the water! Needless to say, I was very proud of him and we spent as much time as we could this summer at the pool.


  July was also packed full of other activities too. The biggest of which was his first trip to Holiday World. Judah has asked to go to Holiday World and Splashin' Safari for over a year and announces how much he wants to go every time he sees a commercial; so when my dad's family decided to go together this summer we thought it would be a great opportunity to take the kids. Well, the excitement faded in the blink of an eye when we got inside the gate and  Judah realized there were other people there :( For the first hour or so that we were there he refused to ride anything and just wanted to hang on us not saying a word completely withdrawn. I immediately feared the worst and thought we were going to have to leave or fight this all day; but after we literally forced him to ride the kids' bumper boats (and explained to the worker on duty about his situation) he did great and joined right in on the fun. He especially loved the water park and Holidog roller coaster. In the end, we had a great day and he wants to go back again next summer. I was so proud of him for conquering his fears and anxiety and moving on with the day.
  He has also made some great strides in areas that come very naturally to other kids, but have been a struggle for him. Two of the biggest accomplishments for the summer were learning to catch a ball thrown to him with just having it tossed in his outstretched arms and peddling his tricycle. It took many, many hours of work; but he was determined to learn and he did! He is so proud of himself that he can play catch with daddy now and catch the ball almost every time and can ride his tricycle around the garage :) We also got him a dry erase workbook to work on tracing and handwriting and he has greatly improved. He loves showing off his finished pages and "teaching" Hannah how to do them too :)
  Towards the end of July we were finally able to get the ball rolling with the School Corporation and began the testing and assessment process to see if Judah will receive and IEP (Individual Education Plan) before beginning Kindergarten next year. We began with an assessment and test with the school corp.'s psychologist, which he did great on academically as usual. He then referred us over to the speech therapist to evaluate what, if any, services they could provide to improve his communication. We weren't able to meet with her until a couple weeks ago, but it went great and she was very impressed with Judah. He aced the test and she even had to go further in the testing than she ever has with someone his age because he tests out on about a 6 1/2-7 year old level!! In the end she agreed that he is very intelligent, but does need to some work on his non verbal and social communication (such as empathy towards those he is talk to and reading and communicating body and facial language). Once the entire assessment is completed and his evaluation is done we will begin meeting with her once a week to begin therapy for these areas. Thankfully, Judah really liked her and I think he will do great even if I'm not in the room with him. Our next step is having the school corp.'s behavioral specialist observe him during Pre-K and see what he views as areas where Judah will need special assistance or is limited in some way. This is supposed to take place on August 12th, so please be praying that all goes well! I was very encouraged today talking to the behavioral specialist and explaining my concerns that Judah is very comfortable at his preschool so I worry that his "ticks" won't show during the observation time and he won't appear to have any issues different from the average 4 year old. He reassured me that it happens all the time and he would keep that in mind while doing his observation.

  On the topic of school... Judah began his 3rd year at Kiddie Garden Preschool at the end of August and is adjusting well to being in a new classroom and having new teachers (one of which is a family friend who he already knew). The first day started out pretty rough and he had to be carried to class by the preschool director in tears and having a meltdown :( I was so afraid that it was going to be a month(s) long battle to get him to go; but by the end of the first week he was doing great. Today he got to take a snack to share with the class and was so excited to share his cupcakes with everyone. He is also very excited about Show and Tell tomorrow!! So far he has come home with a good report and is even already making great improvements in his handwriting, which is a huge weakness for him.


   All in all we have had a great summer!

Thursday, June 16, 2011

Problem To Solve or Adventure To Live...

  So, this is going to be pretty personal today; but I really wanted to share this as it is a huge part of life right now.

  A couple weeks ago, as I was actually logging into an account online, one of my favorite quotes from a book was brought back to my attention... "Life is an adventure to live and not a problem to be solved." It is from the book "Wild at Heart" by John Eldridge which I highly recommend for anyone who is a man or married to a man, has a father, son, brother or just knows a guy! That is totally off subject, though. The point of all this is that seeing that quote again started to make me think... a lot. I started to really examine how I am living my life and specifically how I have been viewing Judah and how I "deal" with his Asperger's. After all the thinking and praying I realized something and I didn't like it very much. I have been looking at his Asperger's a lot of the time (not always, but most of the time) as a problem to solve and conquer and, as much as I hate to admit this, I have at times looked at him as a "problem to solve". It broke my heart when I realized it and I felt like I have failed him in some way. I realized that although I have been saying that we are on the adventure of life with Asperger's, I haven't really been living it. Since recognizing that there was something different about him I had made it my quest, so to speak, to find ways to "help him". Don't get me wrong; I whole heartedly believe that therapy and diet are essential for him; but the attitude I had about it was wrong. I was more focused on fixing him than just being his mom and didn't even realize it. I was missing out on so many of the special things that make him Judah in my quest to help him be "normal".  I was so busy trying to get refferals, set up appointments and read food labels that I wasn't taking the time to laugh at his jokes that don't make sense, listen to his endless animal facts or just watch him experience life in a way that I never will. Even now as I type this I have tears in my eyes because I feel like I have missed so much in the past year and I was right there with him the whole time. I just wasn't looking at it the way I should have.

  As a result of this epiphany things have changed around here, as you can imagine. There are definitely still the frustrating days and things happen that drive me crazy, but that is just life with kids. haha However, for what seems like the first time since all of this began, I have seen things in my precious boy that I never have before. One of the new things that I have recently noticed is that, for whatever reason, he makes the weirdest face and moves his mouth back and forth while he drinks from a straw. It is hilarious to watch! Small things that this are what I was too busy to notice before, but am loving now. I am so grateful that God brought that one simple quote back to my attention, even if it was just so I could see how entertaining it is to watch Judah drink from a straw. All too often I get caught up in the stuff and forget about the joy that the stuff can bring. I'm sure it will be something I will have to keep in check for years to come, if not my whole life, but for now we really are living this adventure and not trying to just solve it.

   On that note... What adventure are you missing out on?

Tuesday, May 3, 2011

"Honey, you can't wear that..."




    So, one of the biggest fights and laughs we have is over what attire is appropriate. We have gone through the "monochromatic phase" where everything had to have the same color in it; never mind if it was the same shade of that color. We have also gone through the "tank top phase" where he wanted to wear tank tops everyday no matter how cold it was. There has also been the "hat and gloves phase" in which he wanted to wear a sock cap and gloves EVERYWHERE we went no matter how warm it was. Each of these, for whatever reason, have always manifested at the opposite season of when it would be appropriate. Thankfully after time and many many discussions about why we can't wear the designated items out because it is the wrong weather or doesn't match we have been able to move out of each phase to something else.
    However, there is one phase we can't seem to get out of.... the infamous "rain boot phase"! This has been going for years now and seems like it will last a life time. It all started when Judah was 2 and I thought it would be cute to get him a pair of bright orange rain boot when I was at Wal-Mart one day. As soon as we got them home and he wore them the first time they became his fashion staple! He wore those hideously bright boots to the store, to our family business, to the library, running errands, to the doctor and even to church. The worst part was it seemed that he would never out grow them. Eventually he did and I thought we would be able to finally move past this phase. Over time he did seem to get over the fact that he couldn't wear them anymore and move on to wearing a variety of shoes. Then I made the biggest mistake of all...
    Just after Christmas this year we were at Target getting his sister, Hannah, a new pair of boots and she spotted pink polka dot Hello Kitty rain boots. We agreed that she could get them since she didn't relaly have any shoes to wear out in the snow that would keep her feet dry and she was thrilled. Well, it only took Judah a matter of seconds to realize that right next to the Hello Kitty boots was a pair of bright green boots with a frog's face on them. He was in heaven! He announced very loudly and with all the joy he could ever have "Look, there are boots just for me!!" In a moment of weakness we agreed to buy him a pair too and he was elated. We explained to him that they were when it rains or snows, though, and not for all the time. He said he understood. Now I am pretty sure it was just him telling us what we wanted to hear, so he could get the boots :) So, now we are back in the "Rian boot phase". Since we got them they have been worn to preschool, the doctor's office, Story Time, the grocery store, the family business, running errands and yes, even church. He has even worn them out with shorts on a couple warms days we had this spring! A few times I have tried to talk him out of them and his reply was "But, mommy, it could rain and I don't want to get my socks wet." Sometimes he is just too smart for his own good!
     In his defense he gets complimented on his boots everywhere we go and is so very proud of them. Although, they may not be the most appropriate thing for him to wear or even the most fashionable; it brings a smile to my face every time he wears them. The good thing is, we bought them with enough room to grow in so we should be set until next spring :)

Friday, April 29, 2011

How it all began...

    As we have begun this journey it seems that I am asked one question more than any other... "What made you have him tested?" I think that is the hardest question to answer. With Judah it hasn't really been one specific thing; but instead many things all lumped together. The first thing we noticed were his sensory issues, then his lack of some basic fine and gross motor skills and lastly his delays and awkwardness socially. When he was younger we wrote a lot of things off as age or 'he's such a boy"; but the older he has gotten the more his "issues" have been apparent. Unlike children with autism, Judah makes eye contact and does talk to people. It's just very one sided when he talks and he has no understanding of non verbal communication and a very hard time reading facial expressions which makes it hard for him to empathize with whoever he is talking to.


    As anyone with a child knows, you never want anything to be "wrong" with your child or for them to have to go through life with any kind of label on them. We have gone back and forth many times on if we really wanted to pursue testing and therapies for Judah for this very reason; but in the end realized it isn't about what is comfortable for us or how we feel but about what is best for our son and finding out what he needs to succeed in life. It hasn't been an easy road by any means, but what in parenting really is?! I talked to our pediatrician on multiple occasions and she kept telling me to keep an eye on it; but finally referred us for testing when he had a "melt down" in the exam room, just because we were out of his usual routine, crawled into a small space between the counter and the wall and sat crying and refusing to come out. God has blessed us with such favor in the testing process and we were placed with a great doctor for his testing and diagnosis right away. We have also been blessed with great family and friends who have been very supportive of us through this process.
    Although Judah is going to have to live life with some extra hurdles, one of the things we have found living with this syndrome is that it also brings with it some very humorous things too. For starters, he takes everything very literally which makes most conversations pretty funny and his responses to sarcasm even funnier. My favorite times with this are when  we give him a command like "go take your shoes and sweatshirt off." His reply will inevitably be something like "mom, they are flip flops and it's a hoodie." One day I he asked for a snack while we were at our family business and I told him that there was a cheese stick in the refrigerator for him. He responded with "well, there are actually 3 cheese sticks in there." He also has a hard time understanding common sayings like "We are going to run to Nana and Papaws" and has even been upset when we went out to get in the car instead of actually running to their house. The best part of all this is that he doesn't really get humor like everyone else does, so he makes up jokes that are so not funny that they make us all laugh.

    This isn't necessarily the life that I would have chosen for our family, but I wouldn't trade it for anything in the world! Judah is a handsome, intelligent, loving boy with an infectious smile and I wouldn't change a thing about him even if I could. As we travel through this journey of living with Asperger's as a family I hope you will stop by often to share in our adventures and celebrate the life of an amazing little boy with us.