Wednesday, March 6, 2013

Another day, another adventure

First off, I'd like to warn you that I'm posting this from my phone and well... auto correct hates me! Lol I try to catch all of the random and weird words auto corrected in, but when I start typing to fast who knows what will get left in. We'll call it a game :)

As I type this it is 5:50am and I've been up for almost an hr. I'm sitting in my pjs in a hospital room recliner next to Judah sleeping soundly in his bed. It is the beginning of day three in the hospital.

For those who haven't seen my posts on Facebook... Judah got sick with what we thought was a run of the mill stomach bug thus past Friday night. It started with the ever so common waking up in the middle of the night with a belt ache followed by throwing up and sleeping on mommy and daddy's bedroom floor on a pallet of blankets with a trash can near by. By Saturday morning his diarrhea had started and his appetite was gone. Then on Sunday we thought we saw the light at the end of the tunnel. His appetite was back a little, he hadn't thrown up since Saturday evening and he wad perking back up some. We were wrong. By Sunday afternoon it all came back with a vengeance this time. He started in with uncontrollable severe diarrhea and went down hill. He slept on or floor again that night and was up a few times.

By Monday morning I was getting pretty concerned that he wasn't keeping any food or fluids in and all we had been able to get him to eat for over 12 hrs was a single banana. Around 10:30-11 I made the call to our doctor to get their opinion/advise. They offered to see him, but said they would send him to the ER for fluids if he was dehydrated, so we could skip an office visit and go straight to the ER if we wanted. Something in me knew things just weren't quite right, I guess, so we opted to head straight to the ER. My parents were both home from work and not feeling well but still offered to keep the girls for us, so I could go ahead and take Judah in, until Larry could get out of work and pick them up. I assumed we would just get some fluids in him, possibly some meds for his stomach pain and such and be back home by that night. However, things didn't go according to that plan. They got him checked in and hooked up to an IV pretty quickly. He even watched and helped put his own IV in! He was pale and extremely lethargic but still mustered smiles for the nurses and everyone loved him. He was pretty popular in there :) They quickly started running tests and a few house after arriving they came in and said he was going to be moved up to the pediatric floor. I was surprised and not surprised all at the same time, if that makes sense. That is where this adventure really began.

In the ER I didn't really get a clear cut answer on why they were admitting him other than his white blood cell count was high. Once up here I was able to talk with his nurses and doctor much more in depth and we began the hunt for what wad causing all if his symptoms. Basically, his white cell count is very high but he also has white cells and blood in his stool. Neither of which are apparently common in child with viruses. That then led them to begin the hunt for some kind of bacterial infection or chronic gastric disease. The doctor here has been great and us really hoping we find something in one of the less invasive tests before having to move to the much more inside ones. The first thing they tested for was rotavirus-negative. Then we moved on to stool cultures for bacteria-so far those are negative too. Next came a C Diff test-negative too. Then they bright in the big guns!

As if Judah doesn't already have a big enough collection of doctors, we have now added a pediatric gastroenterologist to the mix. Try saying it five times fast... it's hard! Anywho, she is great and we both really like her. She came by yesterday and checked him over and we discussed all of the possible options and tests. Since the others were all coming back negative, she decided to start looking at chronic disease options next. The first we are looking at is Celiacs disease. It sounds bad, but since it is easily controlled with diet (which he already eats such a strict one), it wouldn't be that hard to adjust and adapt to meet those needs. As weird as it sounds, if he's going to be diagnosed with a chronic gastric illness it's the one to have. They drew the blood for the test last night and we are now playing the waiting game to get the results back. It's definitely not one of our favorite games!

As far as his symptoms go, things were staying to look a little better yesterday late morning. He asked for breakfast in the burning, ate some corn flakes and fruit and seemed to be perking up. His doctor ordered a dose of probiotics to try to help "slow things down" and they seemed to do the trick. He finally had a semi normal non-diarrhea poo and we were all thrilled. It looked like we could even possibly go home if he kept it up. Instead, not even an hour later, the excitement was over. His diarrhea was back and even worse. His output was higher than his intake again and by 3pm we knew we were here for another night. As of 10 pm last night it hadn't gotten any better either. We decided to give him a dose of ibuprofen, then, to possibly help with his stomach pain and so he could get a little better sleep. Amazingly he was asleep by about 9:30 and is still asleep at almost 6:30! He woke up a handful of times through the night because his IV pump would go off because he was laying on his line or something like that, but he didn't get up a single time to go to the bathroom. His pull up us filled to the max, but so far he hasn't had to go poop. I don't know yet if he will as soon as he wakes up or not, but I'm praying for the best.

As far as today goes... We wait. We are waiting for the results of his latest blood work and for him to drink enough to stay hydrated on his own without needing the IV as well as to intake more than he outputs in poo.

Please pray for guidance for his doctors and that we will finally be able to get some answers soon! If these tests come back negative three has been talk about having to do an endoscopy to find out exactly why his body is still doing all of this 6 days later. That would not be fun, so we really aren't exited about that route.

Please also pray for Larry and I. As any parent knows, it is the worst feeling in the world to have a sick child and not be able to make everything meter for them. To be honest, too, I've held it all together really well this week and done fine up here alone with him; but I'm terrified. I'm terrified that something serious is wrong with my baby and that I won't be able to help him or make him better. I'm terrified that this is something he will have to deal with his whole life and, like any parent, I hate seeing my child in constant pain. We have made it through so much with him and I knew we will do it again. It's just not any fun in the middle of it. Larry is just as scared as I am, but also has the added stress of not being able to be up here because he is at home with the girls and has to go in to work some.

Or family has been such a support for us and our parents were able to come up and see him yesterday, which made his day. They brought him lots of coloring books, toys and fun things to do and even brought me my favorite chocolates and some magazines :)

I knew we will get through all of this one day at a time and so appreciate all of the thoughts and prayers from everyone. Life with Judah has definitely not been what I expected when I found out we were having him almost 7 years ago, but I wouldn't trade my beautiful boy for anything! He lights up my world and I am honored that I get to be the one here in this recliner in a dark hospital room next to him sleeping in the bed.

Friday, December 21, 2012

The aftermath

I don't think there is an adult in our country right now that doesn't know the devastating events of last Friday or immediately react to the simple words "Sandy Hook Elementary". It was undoubtedly one of, if not the worst events our country has ever experienced in our history. Even a week later people are reeling from it and it has brought out a lot in people that we don't usually see. Heroes emerged and families were drawn closer together. It made us all reevaluate our priorities and how we are going through life, especially where our kids are concerned. It has been very different for everyone and we have all processed it in our own ways.

For those of us in the Autism community, however, it has been a very different experience all together! It didn't take long for speculations to come out of the media as to why the shooter (I prefer not to acknowledge him by name) would have done such a horrific and vicious thing. Some made sense and some were simply made out of ignorant assumption. That is where the tie to ASD (Autism Spectrum Disorder) families came in. Sadly, one of the first things that people ran with was the possibility that he had Asperger's Syndrom. For a lot of the country it was the first time they had ever heard the word Asperger's and immediately began associating it with violence and horrific crimes. The theater shooter in Aurora, CO was also suspected of having Asperger's, which made this even more devastating to the ASD community. As I read through media posts over the past week my heart was broken as I read comments by people saying that the only reason this happened was because he had Asperger's or that he did it because he was Autistic. Then I began reading posts by parents who's children are on the spectrum and were being bullied even more because of their ASD or siblings who were being questioned if their brother or sister were going to kill everyone and on and on. When I read the news and watched the footage of last week's attack at Sandy Hook all I could do was sit and cry because of the loss of so many innocent lives who were cut so short and for what their parents were going to go through. It was close to home. My own son at that very same time was sitting in his Kindergarten classroom oblivious to the horror going on in CT. My heart broke. Then a different kind of heartache came.

I have always known and, as best as I can, tried to prepare myself for the inevitable speculations and bullying that Judah will most likely face one day. I have, on more occasions than I like, had to face people who were ignorant to what Autism is and why my son if the way he is; but never before had it ever crossed my mind that people would one day worry that my child would be capable of committing horrific crimes because of his ASD! This week, I was made more aware than ever before of how little education there has been for the general public on ASDs and how they impact the lives of those that live with it. Yes, Judah has meltdowns. Yes, some of them can be "violent". Yes, he has a hard time expressing and reciprocating proper emotion to those around him. And, yes, he has a hard time understanding that his actions can cause others physical pain. It is all part of his ASD and will be a part of his entire life. It's just the way his brain is wired. However, he is not SICK! ASD is a neurological difference and not an illness. There is no cure and there isn't a specific known cause. There are theories, but nothing definite that causes ASD. Medication can't change the way his brain in wired or the way he processes the things around him. When he does have a "violent" meltdown, it is not because he wants to hurt anyone around him nor is it premeditated. It is because he is terrified of what is going on around him and doesn't know how to respond to it. It is always out of spontaneous raw emotion and a defensive reaction to the changes around him. Judah is 100% incapable of premeditating any kind of violence against anyone. When he does accidentally hurt someone with his actions, he is devastated - usually to the point of tears and hiding! Not long ago his teacher and I had to have a long talk with him because he was playing too rough with one of the other boys in his class pretty frequently and hurting him. Judah was devastated when he realized he was hurting his friend and so embarrassed about it. He even insisted on taking him small gifts and pieces of candy for a week to make up for it. Judah is one of the most loving and caring people I've ever known. He doesn't always know how to put that into words or proper actions, but he deeply and wholly cares for the people in his life and is completely incapable or premeditating a violent act. He is even compassionate to strangers around him and frequently offers to give his own belongings to those in need or offers to help others when he realizes they are in need. He not only isn't able to fathom hurting those around him, but it would be so far out of his routine and schedule that he couldn't handle it.

Larry and I made a point to not expose our kids to any of last week's events and to shield them from the horror that occurred. There was no need for them to know at such a young age or to cause any anxiety for them concerning school, especially Judah. As far as I know, they know nothing about it and we would like to keep it that was until they are much older. With that said, as the mom of an ASD child it is now a huge fear that Judah will one day be associated with a mass murderer simply because they possibly share the same diagnosis. As a parent, that breaks my heart more than words can express. Any parent can tell you that they want to protect their children at all costs and want to shield them from any form of torment or harassment in their lives, however, this week I realized I may not be able to do that forever. We have always been very open about Judah's diagnosis and most kids at his school know that he has Asperger's. Our hope was to educate people in our community about what ASD is and how to interact with those with it and also that even though Judah is Autistic, he is still a normal kid like everyone else. He just has to wear tagless clothes, eat one food at a time (and they can't touch), chews of teething rings when he is nervous, hates trying new things and has to religiously live by a routine :)

I guess when it comes down to it, the reason I felt compelled to write this post isn't because I think any of you reading it would think Judah was capable or doing horrible things but because we need your help. I am only one mom and can only educate so many people on my own. The fact is that last week's shooter may actually have had Asperger's, but that wouldn't cause him to commit such a horrible crime. Statistics have consistently shown that people with ASD are 50% more likely to be the victims of violent crimes than non-ASD people and that much less likely to commit a crime than the general population. Two of the most compelling things I saw this week were Youtube videos posted by 2 people with ASD and their plea for people to not see them differently because of their ASD. I have to admit that I cried through them because I knew that one day my own son may have to make that same plea if things don't change. 

 What I ask of you is that you share our story with others, that you inform people about how caring, intelligent and amazing Judah and others with ASD are and that you stand up for my son. I read one story this week of a 12 yr. old boy that stood up in the middle of his school assembly and defended the ASD community to another boy who stated that last week's events happened because of Autism. He is a very shy and quiet 12 yr. old and his mother stated that it was VERY out of his nature to do something like that; but he did because his 10 yr old brother has a sever form of Autism and he stood up for his brother. That boy is my hero! He stood up for his brother, who can't even speak for himself. He stood up and educated an entire middle school on what ASD is and how it affects their lives. He inspired me to do the same. I'm not in the middle of a gym, but this is my way of standing up for my son, for my friends' kids and for so many other who can't do it for themselves. Will you stand with me?

Here are two great videos from this week...

My name is David:

I have Autism, please don't fear me:

Thursday, December 13, 2012

Where has the time gone?

 Today marks a very special day in our lives. It is the anniversary of the day that we welcomed our first child, Judah, into the world. In other words... it's Judah's 6th birthday! As I was sitting last night and thinking about the past 6 years and everything that has changed in our lives I was overwhelmed by how blessed we have been and how far we have come. 

As I've said before, Judah's start was a pretty rough one and one that we, at times, weren't sure we would get through. Looking back it all makes sense, but at the time was very overwhelming. Through it all, though, I learned that I am so much stronger than I ever thought and what it really means to do anything and go to any length for your child. By the time he was a year old, I felt like I was on a first name basis with everyone in our doctor's office and most of St. Mary's Hospital!! haha Things seemed to "level off" some by the time he was 2 and we were finally able to breathe a little. Then we started noticing some things were different about him. His younger sister, Hannah, was starting to do things he had never done; like crawling and walking before a year old, being affectionate with people outside of her immediate family and a select other few, pursuing playtime with other kids and so on. The older they got the more we noticed differences between the two, but still thought it was just differences in personality. 

By the time Judah reached 3, we really started noticing the differences between him and other kids. In some ways That is when I started talking to our family doctor and she began watching him closely. Since we were in the office so often, she felt like family to us and was able to get a really good look at him and the way he did things. Bythe time he was four she agreed that there was more going on than just "normal boy stuff" and referred us to St. Mary's Center for Children. Yet another doctor to add to the list! haha Once we finally got the ball rolling, it felt like it immediately turned into a snowball rolling down a mountain. After working out the insurance kinks we were finally set up with another office and in April 2011 Judah was officially diagnosed with Asperger's and separation anxiety. That was the moment that so much of his life so far began to make sense. I began understanding why he would melt down over wearing certain fabrics, why his foods couldn't touch, why he would sit for long periods of time in small dark places, why he would get so upset over loud noises, why he was hyper-focused on certain topics like animals, why he often didn't make eye contact and the list goes on and on. We also began realizing all of the amazing talents that came with his neurological differences too; like the fact that he is able to see or hear something once and remember it for life which makes learning new facts insanely easy for him. 

Even before getting the official diagnosis I was reading everything I could find on Autism Spectrum Disorders (ASD) and trying to find anything and everything to help Judah adjust and cope with the world around him. By the end of the testing process I kind of felt like I had been through medical school! A whole new chapter of our adventure began at that point. I began setting things up with the school corporation to get him in speech therapy to work on his delayed social skills and to work on emotional expression and response, set up his IEP and so on. He loved going to speech and we began seeing a huge improvement in him. He started being able to recognize other's emotions and was able to respond to them without our prompting. It was huge for him! He still had good days and bad days, but he good were starting to outnumber the bad. He was still in preschool then and loved it. Drop off wasn't always so great and he was carried in tears a lot of the time, but once in class he loved it and picked up every new skill and lesson they gave them. His only issue came when he learned something the first time the concept was presented and was then bored every time they repeated it. He just couldn't understand why they kept repeating things he already knew :) That was when he found ways to entertain himself... usually not the best idea. haha He was adorable as Santa in the Christmas program that year and even had a "friend" birthday party for his 5th birthday complete with a bounce house and all. He did great at his Pre-K graduation in the spring, too. We were also able to get set up at St. Mary's Center for Children again and began meeting with a great psychologist on a weekly basis to help Judah learn to manage his anxiety and work through his emotions without having so many meltdowns. He loved going and seemed to learn a lot. Then summer came...

The summer started off pretty well this year and he seemed excited about going to Kindergarten in the fall at first, then the reality of a new school and all of the accompanying changes set in about half way through. Needless to say, he is NOT a fan of change. We were able to keep his distracted with summer camp at his preschool, which he loved going to and had so much fun at. He also did swim lessons at the city pool again and was swimming like a fish by the end of the 2 week session. (He loves water!) During the summer we also suffered a devastating loss in our family when Larry's grandpa Tom passed away. Judah took it very hard and had a very hard time processing all of it. From all appearances it didn't seem to phase him in the least, but that was the point that he began having unexplainable frequent meltdowns and very frequent bathroom accidents again. At one point I had to just start putting him in pull up at home again to avoid more messes. It was so hard to watch him go through that and not be able to make it better for him. We were so blessed to have his psychologist and they spent many visits talking through it and helping Judah figure out what he was feeling and how to put it into words. 

Things seemed to be getting better and then it came time to get ready for school. One day he informed me that he was just going back to preschool and not to Kindergarten :) The closer we got to the beginning of the year, to more frequent the bathroom accidents got again and the more meltdowns we had. Thankfully the school and Judah's teacher were great about letting us go in and visit a couple time before school started to see his classroom and wander the halls without anyone else there. It seemed to put him much more at ease with the coming changes and make him feel much better. The first couple of weeks were touch and go, but we made it through. We quickly learned that he did much better arriving at school after everyone was already in the classrooms and the halls were empty and the school was very quick to put that in his IEP and accommodate him. We also learned that he is insanely fast and can run from his classroom and out to the parking lot before anyone knows he's gone! That was scary!!! He made it out twice, but his teacher and aid quickly came up with a plan and were able to get him into a routine that kept him from wanting to run away every day. We have been so blessed to have him with a teacher and aid who have gone out of their way to help him and make him feel safe and comfortable there. I even think he has developed a little crush on his teacher :) I get so many good reports about him and they seem to love having him in class. He definitely has his fair share of tough days and has had to "pull his stick to red" (the discipline scale they use - meaning he looses his 2nd recess and had to be reprimanded many times) more than a few times, but has overall adjusted to kindergarten really well. We were even able to drop speech therapy during school because she thought he was doing so well that he doesn't need it anymore and didn't want him missing any more class than needed. During the beginning of school we switched to a new psychologist because his took a new position out of state; but we really love his new one and she is great with him. She has worked so hard to come up with a great plan for him and he has made great strides working with her on a weekly basis. He was also able to join the Boonville swim team this fall and is becoming a great swimmer. His coach is amazing and has the patience of a saint with him! the water seems to relax him and help him regroup so I really look forward to Tuesday and Thursday nights. He also sleeps great those nights :)

His IEP review went really well this year and we are in the process of making some changes to it. Right now he rides the Special Ed bus 3 days a week because we felt like the "big bus" (as he calls it) would be too overwhelming for him. He didn't fair very well riding it for their fall field trip and I was even with him. The problem, though, is that he has to miss about 40 minutes of school on those days because his bus leaves much earlier than the regular buses. The school corp. Autism Specialist is working very hard with us, though, to find a way to make adjustments so he can ride the "big bus" without being overwhelmed or causing more anxiety for him. We are hoping to have everything in place and make the big switch after Christmas break. So far Judah seems to be warming up to the idea. 

Now that we are getting in the full swing of the holiday season we have noticed some "steps backwards" for him and experienced the worst meltdown we have ever had with him just the other night. At one point I was even in tears trying to calm him down while my mom and I had to physically restrain him so he wouldn't hurt himself or someone else. It was absolutely horrible and I pray we never have another one like that again!! In November the insurance company made some changes without telling us and he wasn't able to meet with his psychologist for a whole month, which through off his entire routine. He has had multiple big bathroom accidents in the past couple of weeks (2 of which were at swim practice... wet swim trunks and bathroom accidents aren't a good mix!) and has been much more withdrawn, which is so hard to watch. Thankfully we were able to get back in with his doctor on a weekly basis again and she is hard at work getting him back on track and giving us more tools to use at home to help him. I absolutely love her and am so thankful we have her. 

Our family has been so great to help through all of this too. I don't know what I would do without my parents... mom, especially. She has been able to calm him down at times that I couldn't think of anything else to do and they have taken him with them so many times to give me time to take a breath. I feel so blessed to have such an amazing support system and know that Judah wouldn't do as well as he does or be the amazing kid that he is without all of our family. I have realized in the past 6 years that it really does take a village to raise a child - especially one with ASD!! lol

However, there are days in the middle of the chaos that he comes home from school and just wants to sit on the couch and cuddle with me. Then all of the stress, craziness and exhaustion just disappear :) There are days when I'm at my wits end and think I'm going to end up pulling my hair out, but they are by far outweighed by the days that he looks at me, smiles with his bright blue eyes and huge dimples and says "I love you, too". Those moments, no matter how scarce they may be, make every other crazy day worth it! The past 6 years have, in many ways, not been what I had expected or even dreamed about when I was pregnant with Judah; but looking back at them I can honestly say that I wouldn't change a thing about them. Through him I have learned what it really means to love with every fiber of your being, that I am so much stronger than I ever knew I was and more animal facts than I ever thought I would know in this lifetime (and I'm still learning more). I have learned to be flexible and live by a routine all at the same time and how to laugh at things that would otherwise drive me crazy. Most of all I have learned that big blue eyes, dimples and a simple "I love you, mom" can make everything bad in my life meaningless because it means that my beautiful boy is healthy and knows that he is loved; so I must be doing something right in all of this. 

I am beyond proud of the amazing person Judah is and who he is becoming and know that he is going to do amazing things in his life because he has been given the gift of Autism.

Wednesday, August 15, 2012

Ready or not, here we go...

Well, whether I was ready or not, the first day of Kindergarten has arrived and is in full swing. I wasn't so sure we would make it to this day a couple weeks ago. Well, I questioned more if Judah was going to make it to today! haha In the past few weeks we have experienced all of the joys of Asperger's anxiety to the fullest. Judah has been chewing on everything he could get his hands on, fluctuating between constipation and diarrhea (mostly on the diarrhea side), complaining of regular stomach aches, constantly talking (most of which was random ramblings), been completely unaware of anyone and anything around him, constantly moving (aimlessly most of the time), stemming on anything and everything he could touch and having regular bathroom accidents. To say the least, I've been one tired momma on the brink of my own meltdown! haha

To prepare for today we went to Loge Elementary (Judah's new school) on a couple different days and gave him time to look around the room, talk with his teacher and walk the halls without all of the other kids there. I also had a "conference" on Monday of this week to talk over all possible scenarios we could think of and go over all of Judah's specific needs. I am so happy to say that his teacher seems great and I think she will be a perfect fit for him. She seems to be very organized, structured and consistent with the guidelines and boundaries set in the classroom, which are all things he thrives with. He told me last night that he is going to like being in her class because she is very nice. I can't even express how glad I was to hear him say that and know that he was actually looking forward to starting school in spite of all of the anxiety he has been dealing with. His teacher was also more than eager to let us bring in a small box to keep on her desk for Judah's "comforts" (chew toys, a coozie ball, silicone bracelets, a small piece of his blankie and a few small stuffed toys that he can stem with and rub to ease his anxiety. All in all, I have been so pleased with the school and their willingness to meet Judah's needs so far. 

I have to admit that I did get a little choked up as I labeled and packed all of his school supplies and packed his lunch yesterday afternoon. I have packed supplies in his backpack for the past 3 years for preschool, but this time was so different for me. I think it finally hit me that he isn't my baby anymore, but is growing into his own independent person. The realization that he will be away from me for a little over 6 1/2 hrs. 5 days a week is finally hitting me and I'm just not sure I like it very much. I know there are definite perks to this stage and one is that I will be able to accomplish so much more during the day now that I don't have to fill me day with repeating his name 50 times every time I try to get his attention and reminding him to do something every 5 minutes or less. haha At the same time, I love my boy and as a mom want him with me every minute. Having to assist him in daily tasks and remind him to look people in the eye, explain emotion to him and repeat his name 50 times is all I have known for the past 5 1/2 years and I am honestly going to miss that, as weird as it sounds. It is such a huge mixture of emotions! They, whoever "they" are, weren't kidding when they said parenting is the hardest and most rewarding job you will ever have!

This morning as we got ready, I did fine and didn't even get choked up taking before school pictures and getting the kids in the van. I even did fine walking him into his class, getting his name tag and getting him settled at a desk. He did great too. There was a little hesitation and he started back stepping until he was against Larry as we walked in the door and his teacher bent down to say hello, but we were able to quickly distract him by taking him over to find his name tag. He was very quiet and just seemed to be taking it all in and observing everyone in the room, which is a much better option than the possible meltdown we could have had. He was even fine when we kissed him goodbye and walked out. He did make sure to tell me that he was okay because Mrs. Saltzman (the director from his preschool) was in the room too :) Larry and I did good too. I got a little choked up walking out, but didn't shed any tears and was pretty proud of myself. Then I got to work and decided to uplaod all of this morning's pictures to facebook. That wasn't sure a good move. The pictures triggered the tears and it was all she wrote from then on. I have since recomposed myself and seem to be doing ok now. I have teared up a couple times writing this, but can compose myself pretty quickly. I think I will actually be able to make it to 2:50 now. 

I am so looking forward to picking him up in just 3 1/2 hours and hearing all about his day and how it went. I am taking it as a good sign that I haven't had any calls from the school yet and hoping that he is having a great time in his new big boy world. I am so proud of the person he has and is becoming and, although it will be hard for me, can't wait to help him prepare for many new journeys in his life!

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?