just for Jason :D

Tyler fussed at the juice I gave him yesterday. He said, "I want DIFFERENT juice!" Yes!!! He said different! That's a biggie. I grabbed him up in a bear hug despite his rude, whiney tone and said, "OF COURSE you can have a different juice!" Those small little victories make my day.

A little bit of venting...

I just need to get this off my chest. Sometimes, good-willed ppl make comments that hurt...not because the comments are hurtful or because the people are insensitive...it's because people don't see the full picture. Once an occupational therapist made an off handed comment about how "high-functioning" Tyler was.....after working with him for weeks and weeks and weeks on a goal and many tantrums, he performed the task she wanted.

Sometimes people talk about how normal Tyler seems, even though they have never tried to have a conversation with him or give him a hug. I have to watch my son struggle every day. I receive the blows and kicks from his tantrums. I am the one who gets rejected when trying to get a hug from him. I am the one that witnesses him slap himself and beat his own head with his fists. I guess what I am trying to say is that comments that minimize Tyler's deficits and disablilty----well, it hurts. It's like icing on the cake of the pain that I feel every day. I have even had people tell me that they he was mis-diagnosed. To these people I say, "Live a day in my shoes!" Then, tell me how normal he is. Being Tyler's mom is hard. I don't want sympathy, just understanding. You DO NOT know autism unless you live with it day in and out.

If you want to know Tyler and know autism, volunteer to babysit him for a day. You will get an education.

I LOVE his brain

The OT and I made a huge (maybe) discovery about Tyler today. We started with a solid 30 minutes of sensory imput. We did brushing, joint compressions, swinging, throwing, and heavy work. We also did rolling and crawling through a tunnel. Tyler started to act a little tired and wanting to stim for boredom. She said, "Now is the time to try to work with him." So we pulled out 5 new 9 piece puzzles. They were still in the wrapper. Tyler was very willing to sit and work on puzzles for 20-30 minutes. What we noticed was that Tyler had a short glance at the new puzzles before we dumped the pieces in the floor and mixed them up. Tyler consistently took his time, and perfectly placed the brand new puzzles after only seeing the full picture for a few seconds. We were both amazed. Temple Grandin said that her visual brain took a picture of everything she saw. She could take a mental picture of a page in a book and read the page back to you from the picture in her mind. It is actually a photographic memory. With autistic people, often their brain does not work properly, but supposedly, the sensory exercises are like a reset button or connecting a wire. I love learning more and more about his amazing little brain.

Sometimes Tyler has huge successes. I remember the day that Tyler made his first verbal imitation. After many long tries, Tyler attempting to say ball. It sounded more like "bah". But we knew he was trying. I cried that day. Not too long ago, Tyler pulled up his underwear independently. This was also after many trials and days of training. Krista and I were ecstatic. I jumped all over the room. Tyler thought I was completely crazy though he was quite pleased with himself. With his new program, he constantly achieving new goals. It started to just look like percentages on a chart. It is so easy to start taking these little successes for granted. In truth, they are just baby steps to the big goals.

Today, we had a breakthrough. It wasn't Tyler's breakthrough; it was his mama's. Some autistic stims look like a kid annoyingly turning the light on and off 30 times in row. There are other stims called verbal stims. I learned today to NEVER take these stims for granted. Sometimes they are trying to communicate something BIG. Tyler repeatedly says, "What ya doing ma?" He also says "Plug!" constantly. He started going to every plug in the house and pointing it out. Eventually, I had to tell him, "Tyler the plug hurts!" I also said "Zzzzz" as I pinched his arm to remind him of what "hurt" means. So Tyler went on to point out every plug and say, "Plug! Hurt! zzzz zzz zzz." This was cute the first 3 times. Now he does it constantly. Today, while having a conversation with the nanny, she said to me, "He is wanting to know more." I thought about that a minute. "You mean like when he says, "What ya doing ma?" and I respond, "I'm sitting" and he replies "Couch!" He is wanting to know MORE! He wants me to elaborate! I should be saying, "I am sitting on the couch for 5 minutes. Then I am going to go outside and mow the grass with the lawnmower. He doesn't know how to say, "Mama! These plugs are fascinating! Every time you put a cord in it, something starts to go! What do you call what the fan is doing? What is this item you just plugged in? What is it used for?" His mind is aching to know more and more and more. He doesn't have the natural communication skills to ask all the questions rolling around in that little mind! So I am making my new mama goal to teach him EVERYTHING that I can about whatever fascinates him. If the extent of our conversation one day is that my son tells me every minute detail of every power grid in this world, well, that's one conversation I can't wait to have. :)

For those of you who don't know, I am training for the Lifeskills Run for Autism. Running is not the best thing I do, but I am willing to look like a fool for my kids. Mostly, I just want Tyler and Jesse to know to NEVER give up and that they can do anything they put their mind to. My dad always told me that. I would say silly things like, " I am going to be an astronaut!" He always encouraged me and said, "Work really hard in those math and science classes, and you can be." The race is Saturday, October 16. I am hoping to see many friends, family and teachers at the race. These kids have a looooong, HARD race to run throughout their lives. I want them all to get endless support and encouragement.

Sorry it's been so long...

Tyler is out of school for the summer. Though I miss the structure and consistency of school, I am LOVING how well Tyler is doing with his summer therapy. Our Michelle P Waiver has made it possible to have daily ABA therapy with Tyler in addition to OT and speech therapy through the Medical Center home health program. Tyler is getting about 7 hours per week of ABA, an hour of OT per week and an hour of speech therapy per week. He is REALLY blossoming. His speech is beginning to really take off. He tries to start and maintain conversations even if it is with 1 or 2 words.

We have added in a few more carbohydrates into Tyler's diet and have seen no negative results. We still do plenty of anti-yeast protocol and limit the carbs and sugars. At first, we noticed what seemed like hyperactivity from the extra carbs, but it soon leveled back down. I think his body was responding to the extra energy source that he was not used to. Our biggest problem with this seems to be that Tyler requests and tantrums for the carbs instead of wanting the meatballs and nuts. I have been pretty firm with him, and he is doing better with it every day.

So far, the highlight of our summer has been going to fountain square park. Both of the kids had a blast. I also plan to add in some horse back riding this summer. Hopefully, my kids will have wonderful summer memories like I do.

school and such

Tyler's IEP meeting with the public school was today. It was extremely stressful. I am starting to wonder if my disappointment in the school is actually from my unrealistic expectations rather than their failure to meet his needs. He ended up with 30 minutes in the classroom of special ed, 20 minutes of speech therapy twice a week out of the classroom, and 15 minutes per day of ABA therapy. I do not know if fifteen minutes of ABA will accomplish anything. However, I plan to send my ABA book and data sheets so we will all be on the same page. Even though that is a very little amount of time, maybe it will be a good supplement to what he is getting at home. Pray that we can get some good people in here to do ABA with him in the evenings.

I left the meeting feeling very defeated, because I know that he is getting less than many of the kids I know with autismin other schools. But, I also have to remember that Tyler has some HUGE strengths and made wonderful gains the past year. In the end, if he can have a good, safe environment where he can learn and build on what he is learning from home, and I get some time to regroup, it is worth it. I am still disappointed, but I guess that I will have to just pick up the slack.

Priceless Moment

Jesse sits up to next to Tyler on the couch and says, "Hi there, buddy!" Tyler says, "Hi, Jesse." Jesse says, "I love you, Tyler." Tyler responds, "I yu you too." Jesse comes running to me in the hallway with so much excitement saying, "Tyler is talking to me!!!" He then goes back to Tyler's side and begs him to talk some more. Tyler seems to be content with the attention. This is first time that I realized that Jesse may pick up on more of Tyler's struggles than I have realized. Or maybe he is seeing Tyler's successes as an older brother would a baby brother. Either way, this thrilled my heart to see the affectionate exchange and Jesse's attentiveness.

Updates

Tyler is doing wonderfully with preschool at Big Red School. I observed for just a few minutes today and saw him singing, doing the hand motions and loving every minute of circle time. Jesse was in there with me. He looked out the window and said, "Awe, look it's Tyler! He's so cute. I love him!" Of course, all the other moms in the observation room thought that was SO cute.

Yesterday, while walking on the sidewalk into preschool, Tyler waved at a friend and said, "Hi, Andreas!" That was the little boy's name. I was so shocked at not only his remembering his name, but also at how eager he was in the social encounter.

We have not tried another antibiotic for him since reacting to two different antibiotics the other week. Also, he has been stimming a bit more lately. It bothers me a little, but he has had a cold. He has also been around a lot of perfume at the BRS, which seems to bother him. I am increasing the epsom salt baths to help him detox.

We haven't had any word back yet on the Michelle P waiver. I sure hope that everything works out. Some moms have gotten letters lately that they were losing their funding. Also, the state legislature is in session this week and voting on possible cuts in Medicaid. Pray this doesn't happen.

First Day of Big Red School

Tyler did great today at his first day at Big Red School. Snack time was a breeze. He ate what I brought for him without any issues. The only thing he didn't really like was playing in shaving cream and circle time. He will learn to adjust though. He did a lot of pretend play, and used a lot of words this morning. Over time, he will learn that circle time is part of the routine and come to expect and enjoy it.

On the physical issues, Tyler is doing better with the poop thing. He does seem to be stimming more lately though. This always bothers me becaues I do not know if it is a diet issue or just not getting outside enough. I will try to up the detox baths this next week to see if it gets better. I also need to be more consistent with his shots and veggie juice. The shots are a little tricky. Because they sometimes cause a little bit of hyperactivity, I try to not give them near a nap or bedtime.

Tomorrow is day2 at BRS. I hope he looks forward to going each week. I am also working on a picture schedule for him. He is getting old enough now, so I hope this gives him some security in what is coming each week and day.

Preschool

I am getting ready for our extremely busy preschool transition. Next week Tyler begins preschool at the The Big Red School. We also have our first of two transition meetings with the local public school preschool. My hope is that Tyler will receive significant amounts of therapy time and also some socialization in a structured setting. Tyler may not be able to handle this type of environment, but I will not know unless we try it out on him. He will be receiving therapy at school and additional therapy at home from our Michelle P Waiver funds. Pray that God goes before us and paves the way for Tyler and his education. I want God's will above all else. Pray that He gives us guidance and direction in how we should go about all this with Tyler. Pray that the school gives Tyler all the therapy that we are requesting for him. I am having to prepare a lot of paperwork and research to back up my requests for Tyler. Pray that I get everything I need done before Monday. I am still feeling very weak and nauseated. More later!

rashes rashes and more rashes

Tyler is very tired and cranky today...as is his mother. I am dealing with a case of strep throat that I probably picked up from the hospital on Monday. I just hope Tyler doesn't get it. We have all had the illness jinx this winter. His hives healed up quickly after taking him off of the anitbiotic that he was allergic to, but now his eczema is flaring more than ever. It has even moved to his face and arms. I have narrowed it down to three things: flaxseed meal in muffins, yeast dieoff from the Diflucan or Sacchromyces Boullardi (supplement to fight yeast). I will first take him off of the supplement to see if anything changes. Then I will take away the flaxseed meal. Hopefully I can figure this out. I am learning that the puzzle pieces for the autism symbol are very fitting....these kids really are a puzzle.

What a Day!

Well, it was just one of those days. I talked to Dr. Kalb this morning. He was very concerned that the oxypowder and enemas were not having any results. He advised me to take him to get an xray. Tyler's pediatrician told me that she couldn't get him in today, but to take him to the ER because he was so upset. After 3 hours in the ER, many rude stares, whispers and even a "spank his butt" from a know it all, I called Tyler's peditrician and demanded that she take him or send an order to the hospital for an xray. She took him right in and ordered the xray. By the time we were finished, we had spent a total of 6 hours in waiting rooms and Dr.'s offices. After the xray, I took Tyler home for some much needed lunch and nap. They called me with the xray results....just a bunch of air. After he woke up from his nap, I gave him some probiotic and anti gas herbs. Well, the floodgates finally opened. He is much happier and his belly is going down. I just hope we don't have to pay for the ER since we were never put into a room. If we do, this is going to be some expensive flatulence!

Doing Better

My little buddy is doing a little better today. It's looks as though his medicine for his bowels is doing its thing. He had a allergic reaction to his antibiotic last night. My wonderful DAN! Dr. is on call on weekends and helped me in the middle of the night. He is such a blessing. Tomorrow, we will decide what to try next for the E coli. This is the fourth antibiotic allergy and three different antibiotic families. One day at a time...

Update

Tyler is having a hard day. His constipation meds aren't working so we are beginning to worry about a possible obstruction. Considering the red chinese checker ball in his poop one time, I wouldn't rule anything out. The meds have the rest of the weekend to do their thing before I take him for an xray. He is WAY too swollen and his gut is as hard as a rock. He moans a lot, but he is in a pretty good mood considering. He broke out in a rash this morning all across his back and chest. I know this is common with yeast die off, but I am watching him closely to make sure it is not a reaction to any medication. After a warm clay bath with epsom salts, the rash has subsided a little. He has also completely stopped scratching. This reaction is probably toxin release from killing the fungus and bacteria. He is talking a lot today. When I asked him where his drink was he replied, "There he is!" :) No signs of healing regression yet. Let's hope the rash is the worst of the die off this time 'round.

Dr.'s appointment

This morning, Tyler wanted me to hold him while I was cooking his breakfast. He clung to me with a grip, finally relaxed and just laid his head on my shoulder for several minutes. I soaked up ever ounce of this dripping sweetness and thanked my God for that moment. This was the child that used to SCREAM if cuddled. Every good and perfect gift comes from above!

Tyler had his third appointment with Dr. Kalb this morning. This was the first appointment since running his first round of tests. We did a comprehensive stool analysis test and micro oraganic acids urine test. Tyler has something called dysbiosis. This is a fancy term for the intestinal condition of someone living in the Amazon rain forest and drinking their toilet water. For more on dysbiosis, visit this site: http://www.crohns.net/Miva/education/dysbiosis.shtml

Dr. Kalb was happy that Tyler is making many improvements, but he seemed genuinely concerned about the level of Tyler's dysbiosis. It sounded bad when I read the test results; it sounded even worse when someone who knew what they were talking about explained the results. Tyler's bacteria and yeast overgrowth may possibly be the most significant contributers to the autism. We still plan to do the heavy metals tests next time around, but Dr. K said we needed to focus on this gut issue before moving on to something else.

Tyler will be on an antibiotic for 1 week, the Cadilac of antifungal meds for 2 weeks before switching back to Nystatin, prescription probiotics, and continuing with his normal supplements. Tyler is also going to be taking some extra supplements for his chronic constipation. If he is not regular within two weeks, we will x-ray to look for a possible obstruction. Anyone else enjoy spending over $400/day on meds for your kid?? Oh yeah! You guys are standing and applauding, because WE ABSOLUTELY LOVE TO if it makes our kids better. Thank God for flexible spending accounts :) Those clanking plastic bottles in that bag sound almost as sweet as the sound of my little guy's voice.

Big Red School

Tyler had his orientation with Big Red School at WKU yesterday. They seem very prepared and equipped to deal with Tyler's diet and behavioral issues. He only got upset once during the session. When he had to leave the train set to work on puzzles, he was not so happy. They were firm and consistent though and made him work for a "break". By the end of the orientation, he was cooperating. They will teach him to sit in circle time, play one on one in center time, and hopefully eat with other children without stealing food. They have 7 adults to 12 children in that room, and they seem to devote a lot of attention to the kids on special diets at snack time. They also have an observation room for parents. We are very excited about all this for Tyler. The icing on the cake is the fact that they were practically foaming at the mouth to get Jesse in their preschool classroom. They needed typical children for modeling, and Jesse just happened to be a polite, respectful Einstein while we were there. We will be paying nearly nothing for Jesse to go two days a week this spring and summer. This should be a great warmup before kindergarten next fall. It will also give mom a little bit of solitary cleaning time each week :) It seems like a win, win situation for everyone.

Introductions...

Tyler was diagnosed with autism on October 2, 2009. I hope to use this blog to keep family and friends up to date on all of Tyler's progress. More than anything, I hope to give God glory for every little miracle he works in this journey. One night, at about 4 o'clock in the morning, I was pouring my heart out to God as I mourned for my son. His still quiet voice said to me, "Didn't I say that 'all things work together for good...'." He is a good God.

Hebrews 12:1

Wherefore seeing we also are compassed about with so great a cloud of witnesses, let us lay aside every weight, and the sin which doth so easily beset us, and let us run with patience the race that is set before us,