Rise in Autism?

Is there really a huge increase in autism? Yes, but not as much as some would have you believe. There is an increase in moderate to severe autism cases. However, the 1 in 110 statistic is a bit misleading. Autism awareness is also at an all time high. That 1 in 110 stat also includes many children with Aspergers syndrome that in previous years did not receive a diagnosis. Aspergers has been around forever. They were previously known as "nerds". Everyone of us can think back to our childhood and remember 2 or 3 people we knew with terrible social skills but extremely smart in some areas. That statistic also includes children that now carry a dual diagnosis. Many children with Down's syndrome and other disabilities also fall under autism when looking at diagnostic criteria. As you can see, the statistic of 1 in 110 is misleading.

The face of autism:

This is probably not what you think of when you think of autism. My youngest son was diagnosed with autistic disorder at the age of two and my older son was diagnosed with PDD-NOS at the age of five. Autism is hard, but it isn't hopeless. This blog is dedicated to the two most amazing people I have ever met. Please use this blog as a resource and pass it along to families needing to know where to start.


Rise in Autism?

Is there really a huge increase in autism? Yes, but not as much as some would have you believe. There is an increase in moderate to severe autism cases. However, the 1 in 110 statistic is a bit misleading. Autism awareness is also at an all time high. That 1 in 110 stat also includes many children with Aspergers syndrome that in previous years did not receive a diagnosis. Aspergers has been around forever. They were previously known as "nerds". Everyone of us can think back to our childhood and remember 2 or 3 people we knew with terrible social skills but extremely smart in some areas. That statistic also includes children that now carry a dual diagnosis. Many children with Down's syndrome and other disabilities also fall under autism when looking at diagnostic criteria. As you can see, the statistic of 1 in 110 is misleading.

We can't solve problems by using the same

kind of thinking we used when we created them.

--Albert Einstein

Welcome!

Welcome to Puzzle Pieces. There will more information to come. I am currently building this site, so hold your horses and start with the Getting Started section.

Welcome!

Hopefully this site will help you and your family navigate through the challenges and joys of autism spectrum disorders. Enjoy!

Burying the Hatchet

This past fall, David and I were discussing the spring sports craze. Jesse was gearing up for baseball as early as January. He even discussed how he wouldn't be able to go to school in the spring because baseball was really important. David and I were discussing Tyler's interest in baseball, though both of us feared it would be a disaster and a waste of money. During our discussion, David mentioned that Tyler may never be able to play regular sports, but that we can investigate the possiblities in Special Olympics. My reactive response was some random large object chunked at my husband's head and a swift retreat to my bedroom to bawl my eyes out.

NO! Not my child! He is "delayed". He is autistic. He is brilliant. He is anything but DISABLED. That was something that I could not accept.

During a support group meeting, I met a young man named Grant that worked with Kyspin. Grant was in a wheel chair. Grant needed assistance in nearly every way. It was very difficult for him to even communicate. But he was truly BRILLIANT! His beautiful mind impacting me more than any of his areas of difficulty. His intelligence exceeded that of every other individual in the room. This person of great worth impacted me like no one else ever could. I will never be the same after meeting Grant.

The baseball season has started, and we gave Tyler his shot at sports. It has proven to be too much for him as he now claims after each practice, "Done Hotrods!!!" His attention span and maturity level is far below the other kids. None of the four year olds are exactly Babe Ruth, but Tyler avoids the group the entire time. We are ok with his decision.

I am finally ready to embrace his unique brilliance and his disabilities. In an attempt to finally bury the hatchet of disability denial, I am volunteering to work at the Special Olympics next Saturday. I will work, and we will cheer on the participants as a family. Have you ever seen the bumper sticker that says, "My kid beat up your honor student"? Well, I might make one that says, "My disabled kid just fired your baseball star." :) hehe

Continued...

When Tyler went to preschool, Jesse soaked up every ounce of my affection, attention and was thrilled to see Tyler when we picked him up. David and I discussed homeschooling Jesse because he had made a huge improvement. Last fall, we officially began homeschooling. Jesse soared academically. I realized that most of the therapy methods of teaching that I had learned with Tyler also worked great with Jesse. We used visual supports, rewards systems and lots of small short teaching sessions broken up with chores and motor activities. I knew that he still had his "quirks", a short attention span and listening comprehension problems, but I had patience and saw him soar when taught HIS way. Because we decided to homeschool, we started to make extra efforts to get Jesse into activities with other children and "socialize". This is when we noticed some social delays that concerned us both. I was also reading a book at the time that mentioned how some homeschooled boys grew up to resemble mama's boys and not the men we are trying to raise. Jesse bossed children around, sorted out disagreements out between younger children and acted as almost everyone's superior. My thought was, "OH no! He is turning into a MOTHER!" The author of that book was a well-known reformed author who was not against homeschooling by any means, but was noting a trend he saw with homeschooled boys. This led to an overnight (not quite thought out) decision to put Jesse into school. I communicated with his teacher often and informed her the best I could about Jesse. She immediately saw Jesse's differences when put in a class with peers the same age. The most notable difference was a language delay. He seemed confused often and needed constant assistance with his school work. We started the process of tests for Jesse. I really thought Jesse may have Aspergers syndrome. Aspergers is a high functioning form of autism. It is often associated with very intelligent individuals who struggle and fumble through the social world. This week, Jesse was diagnosed with PDD-NOS. This is also an autism spectrum disorder, but the children are not meeting ALL of the qualifications for an autism diagnosis. At the age of five, it is very hard to diagnose Aspergers because five year olds do not have many social expectations. His doctor did suggest that we reassess him age 8. That age will give a clearer picture on Jesse's level of fuctioning socially. Though Tyler's diagnosis shattered me, I have found comfort in this diagnosis. Jesse is who he is. This just EXPLAINS a lot. It also affects my atttitude toward his quirks. He isn't just a stubborn pain in the butt during Christmas gatherings, he is a kid with sensory issues and his language delays make it hard for him to voice his feelings. I love my son with all my heart and will do everything in my power to help him meet his potential--and he has a TON!

A New Course

When I started this blog, I dedicated it to Tyler and his journey through autism. Tyler's journey is now only a part of the story. He now has a partner in this race--Jesse. Jesse has always been a unique, amazing kid. He is BRILLIANT, and honestly the funniest kid I have ever met in my life. Though Jesse seemed to have a will of iron, he has given me the greatest joy a mom could know. When he was a toddler, we would sit in the floor for ages while I quizzed him on animals, their sounds, letters, and numbers (including spanish). The coolest thing was that Jesse seemed to thrive on learning new things. Jesse also loved to build. He would use every kind of block and even random objects. He would gather a stack of dishes, pile them on top of each other in these strange shapes and call it his rocket ship. He first worked the VCR at 12 months old. Jesse struggled with a slight language delay at two years old from ear infections, but ear tubes seemed to remedy the problem. Though Tyler had struggles even as an infant, Jesse still seemed to thrive and surpassed every developmental goal except for his slight speech delay. Our one struggle with Jesse was his will--a will of iron. There was no book or parenting method that would even come close to overtaking it. When he set his mind to something, it could easily turn into a 2+hour ordeal. As Tyler got older, Jesse also struggled with anxiety and large social gatherings. Holiday gatherings frequently turned into tantrum time. Though Jesse always had "quirks", he reached a real low point when Tyler was diagnosed with autism. The stress in the house affected Jesse in a very negative way. Therapists were constantly in and out of the house. Jesse obsessed about everything TYLER. He hid food and toys. He guarded his "stuff" from Tyler like a dog perched by his food bowl. Jesse packed loads of toys and trinkets everywhere he went and battled to keep his stuff with him all the time. He had developed some severe OCD tendencies that were making life very difficult. We were desperate to help him, but also very concerned for Tyler. We decided to put Jesse in therapy to help him sort through his anxieties and feelings. This really helped, but we saw the greatest improvement when Tyler started preschool. Jesse had time to get mom's full attention, and he thrived. TO BE CONTINUED......

Is It Spring Yet?

My children. Well, where do I start? I am a little behind on my countdown to spring this year. After the past 3 days, I have decided it is time to start the countdown.

Saturday: Jesse tied one end of my exercise band to his ankle and the other end to the top of my wicker bookshelf. He climbed atop a nearby chair and attempted a bungee jump. The result was my collection of lovely houseplants scattered across half the room. I still haven't gotten all of the dirt out of the carpet. Later that afternoon, I was in the bedroom folding clothes and heard a crashing noise coming from upstairs and ending downstairs. My first thought was, "Good grief. What now?" I continued folding and then heard a blood-curling scream coming from Tyler. I ran as fast as I could to the bottom of the stairway. Tyler was sitting in a laundry basket with a look of horror on his face. Jesse was getting ready for the shove down the stairs, when I screamed "No!" with all my might. The look of relief on Tyler's face was priceless. Jesse looked rather disappointed. This leads me to the conclusion that the first crashing noise was probably Jesse on a joy ride down the stairs.

Sunday: I took an afternoon nap and woke up to both of their bedrooms totally destroyed. This is actually pretty common. No big deal.

Later, the boys were fighting over a certain car. The toy was a rather heavy race car. I gave Jesse HIS car and gave Tyler the car they were fighting over (Jesse pushed Tyler and snatched it away). After I took the car from Jesse, he threw himself in the floor kicking and screaming. He then chunked his car at my head, barely missing, and made a rather large gash in the wall. Yes, I screamed. Then I, not so calmly, dragged him to his father to avoid child abuse. His punishment was a calm down time with daddy and losing tv for the evening and two more days.

Monday: Oh, little Tyler... I awoke this morning to the sound of running water. That is never a good sign. I crept upstairs to find Tyler dumping buckets of water down an air conditioner register. That one got a spanking.

Because of the aforementioned bedroom disasters, Tyler spent most of the day downstairs with me. I made him tag along as I cleaned downstairs, but he scrambled for things to get into twice when my phone rang and when I had to take the garbage to the road. When I came in the house, he squealed with delight as he ran to put toys in a hole he had made in a wall.

This evening, he came downstairs to tell me, "pee pee" as he grinned from ear to ear. Since there were no external signs of an accident, I asked Jesse why Tyler was saying "pee pee." Jesse nonchalantly says, "Tyler peed in the toybox." ARGHHhhhh!

His cute creation of the day was a drumset, drumsticks and microphone (wicker side table and three screwdrivers).

SO! I think it is time to say only 41 MORE DAYS 'til spring!!!!

On with the new

"Shoes on!"

Tyler has made amazing progress the past few months. We have been able to ease up on his diet a little bit and go back to a gluten free/casein free diet. This is a huge blessing since we have been getting him into more social situations. Americans+food=socializing.

We also made some changes in school a few months ago. He is now attending afternoon preschool. This is one of the best decisions we ever made. Tyler is the only resource kid in the afternoon session. His resource teacher is amazing. I feel confindent that all of his needs are being met every day, and he is flourishing. He is beginning to learn to interact with his new friends. We are planning on adding some new goals for his IEP that focus on his social skills. I also have plenty of time to do ABA with him in the morning.

We are also working on self help skills. Tyler has been able to dress himself for quite a while, but he gets lost in the process. I have been spending a lot of time on the computer making visual aides for these skills. He has become a bit fixated on his "shoes on" chart.

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.