Regression Explained...Finally!

I have searched and searched over the last many months to find a good article on regression in children that are now diagnosed with Autism. Regression is probably the least understood aspect of Autism to people that have never worked with a child who has regressed. So many people don't quite understand how a child can develop language and other skills...and then all of a sudden "lose" it. Well, we didn't understand that either until we heard about it...and realized that Brycen fit perfectly into the puzzle of regression. I think that is why many people first questioned Brycen's inital diagnosis also as the last time they really spent time with him, he was a jabbering, making eye contact, mostly typical child. His regression happened over about 5-6 months time and was so slow that we didn't even notice the language loss at first. We really didn't notice it until he went from a few dozen words to only a handful as we also had a newborn that we were taking care of that of course took up a lot of time. The pictures above were taken when Brycen was about 1 1/2 before he regressed. Notice he had attention span to sit and color, great eye contact with camera, and he was actually tolerating his first haircut with no screaming or tantrums. When I look at these pictures, it makes me a little sad thinking about how much has changed...but then again, he is still my baby then and now and his regression doesn't change that!
Anyway, here is a blog article I just found from Autism Speaks that addresses regression. I think this may give people a little more understanding about what it is and how it happens...though of course we still don't know the why or the way to fix it...but at least explaining it is a great start!
http://blog.autismspeaks.org/2010/03/25/understanding-regression-in-autism-through-direct-assessment-from-infancy/

Potty training...possibly too much information for some people.

Potty training with Brycen...just not happening anytime soon! We spoke with the U of I doctors about it last summer and we agree that it is impossible to potty train a child that can't effectively communicate when they have to go. Whether that communication is verbal or sign language, Brycen is not even close to being ready for that...and we are just fine with that. There are so many more important things in his life we want to work on with him that potty training has taken a backseat to those.
Now, after saying all of that...we are very happy to share that he is starting to recognize when he needs to be changed! He has had control over his bodily functions for some time now as he usually refuses to have a BM when we are away from the house and he can stay dry for hours at a time which is why we have the issues with flooding out in the middle of the night when he wakes up. Many people have mentioned to me about cutting back him fluids in the evening, but that is not possible. The only fluid he has after 5:30/6pm is the 6 or so ounces of juice that needs to be mixed with his Melatonin each night. He caught on way too fast to the crushed pills in pudding and yogurt, so we had no choice but to go to the liquid form which can easily be hidden in his juice with his bedtime snack. That is a whole different battle for us...so I'm going back to the fact he is recognizing when he needs to be changed.
If he has a BM, we usually know the signs...but if we don't notice, he will refuse to sit down, will stop playing, and sometimes go back to his room and point at the changing table. If we ask him if he has a "poopy diaper," he immediately begins walking back to his room and waits for us. If he doesn't have one, he will yell "uhuh" at us (which means "no") when asked, and he is ALWAYS RIGHT! This may not be a big deal to many parents out there, but to us it is HUGE! First of all, he is recognizing his bodily functions, and second of all, he is communicating effectively with us when we ask him the question about his diaper!
Sorry if this is too much info for some people...I gave fair warning in the title! But it's a part of parenting and someday if you have yet to experience it, you will also experience pleasure in knowing your child is taking steps to independence, saving you money, and a ton of garbage each week!

Extreme symptoms...and Start Smart Baseball, Brycen's way!

The last couple days have been a little different with him...some of his symptoms have been very extreme and have worried me a little bit. I know every child on the spectrum can vary each day which is a part of the disorder and that is hard for many people to understand...but I've NEVER noticed it to this extreme. Yesterday when he came home from school, his jabbering and noises were very loud...very disturbing to me since sometimes I can tune him out as I am used to the noise, but that was not possible yesterday. He is well known for not answering to his name when we say it, but yesterday it was so much worse. I think I said his name about 15 times, in different ways and he still did not respond. His eye contact has been getting so much better, but yesterday it was back to what it was about a year ago. When he was getting ready for bed after I got home from work, I stood him in front of me and tried to talk to him, and he continued to look to each side and trying to turn his whole body away from me like he was overstimulated by a simple conversation I was attempting. Today, baseball started like it did last week, but when the kids started running a lap, he seemed very slow and kept stumbling around. I am hoping both days is because he is tired, but that even seems like an odd excuse considering he has actually slept through the night the last two nights.
Anyway, here are two videos I shot at baseball tonight. One is of Brycen doing his version of the crabwalk after watching another parent help his two children do it (I admit, Mommy was way too lazy to get on the floor to try this) and then the other video is his version of the frog-hop.
He just likes to play by his own rules and in his own way. Way to go Brycen! I know you are learning so much and are trying so hard...we are very proud of you!

Are you ready for some...BASEBALL?!

Brycen had so much fun at the Start Smart Basketball back in January that we decided to sign him up for Baseball in March. Brycen is definitely his Daddy's little boy...he LOVES sports! Whether it is car racing on TV, watching Uncle Pat's basketball team play a couple months ago, or kicking a ball around on the floor...he has a knack for sports. He was throwing balls overhand before he could even walk! And he could hit a ball that is pitched to him before he was three!
With baseball, his favorite station is of course the hitting! They have a few T's set up and he loves to hit the ball and watch me chase them. I tried to get him to work on throwing at another station, but he just wanted to run around in circles and he was so happy doing that, giggling and giving me hugs every time I would catch him. We did play catch with the balloons a little bit and he did run around the bases and through the cones, but only if I would hold his hand and run with him. I didn't realize that I was also paying for my own workout these nights!
The best part of the night was when a woman came up to me and asked how old he was. I told her 3 1/2 and she pointed to her little girl that was just 3 and she was doing the same thing as Brycen, running around and just laughing away. I mentioned Brycen's autism to this woman, more because I felt I needed to explain the constant noises he was making and the flapping of the hands every time he would stop running...and her response made me the happiest I have been in a long time. She told me that she actually couldn't see any signs of it in him and just thought he was a very energetic, happy boy that loves to give his Mom hugs! WOW! As I stepped back and really took a look at Brycen at that time, yes I could hear the noises he was making, but there was so much noise in that gym that I don't think anyone else even noticed. I noticed the flapping more because I am used to it, but to others it almost looked like he was trying to do jumping jacks (like others were practicing at the running bases station). When Brycen is really happy, getting undivided attention, is allowed to run off the energy he has built up in him, and is doing something that he absolutely loves...it is amazing to see some of his symptoms disappear or at least be minimized to the point of only being recognized by those close to him or close to the disorder.
Nights like this give me so much hope for his future! He has already come a long way just in the last 6 months and I can only imagine how much he can accomplish in the next 6 months.

Remember the "Walk Now for Autism Speaks" on June 19! We have 17 walkers signed up and our goal is 20. Please consider a donation towards the team to help us meet our goal. Every dollar counts towards the future of these kids and towards educating the community about Autism and the effects it has on children and families facing the disorder! Thank you to those who have signed up to walk and for those who have donated...we will forever be grateful to you for supporting us in the biggest battle of our lives!

Giving all the credit to Daddy for this one!

We all know Brycen has sleep issues...falling asleep, staying asleep, getting enough sleep. Unfortunately for Daddy, he gets the brunt of the sleepless nights with Brycen and trust me, he gets plenty of them. Daddy can back me up in saying, he is soooo jealous of those people that actually have children that sleep through the night. I frequently hear people talking about how tired they are because their child is teething and has been waking up during the night for a couple of weeks...and then I think to myself "talk to my husband, he'll tell you what 3 1/2 years is like." Daddy does this every night (except when Grandma takes over back in Evansdale!) and frequently on nights where he has to work a 12 hour shift the next day at 5 or 6am!
So, until recently we have had to rock Brycen to sleep each night. His brain just doesn't have that capacity to turn itself off as easy as ours and this is where the tbsp of liquid Melatonin he gets every night helps! When I was gone for meetings a couple nights several weeks ago, Daddy took it upon himself to start working with Brycen to fall asleep on his own in his own bed. Daddy implemented the rock a little, make him walk to bed himself even if he whines and cries, and tuck him in, while ignoring the whining and crying and just walk away. AND IT WORKED! I have to say though, that Daddy knows Mommy all too well, and pretty much gave Mommy a talking to saying that she better not mess with this on the nights he closes. So, I have kept my word and followed through with Daddy's hard work. Surprise, surprise...the whining and crying have stopped and even more of a surprise...it actually seems like Brycen LIKES to go back to his bed like a "big boy" and get tucked in while he's still awake.
So, praise Daddy, for helping Brycen accomplish one more big thing on the list!

"Wow" is all I have to say!

Brycen is AMAZING! One year ago was a crazy time for our family...scared and not sure what was going on and wondering how it is possible for a child to "lose" words for what seemed to be no reason at all. Now, we are experiencing so much progress with him that it is almost a different kind of scary! What if we push him too hard...will he stop and shut down? What if we don't push him hard enough...will we miss an opportunity that may never come again? So many questions again, but it's all so different now.
His teachers, his speech therapists, EVERYBODY is in complete awe of how far he has come over the last several months. We went from him screaming when a new person came close to him or walked in the door...to him being very accepting of most people and actually smiling and recognizing the regulars. He used to be oblivious to Aubree...now he is actually initiating "play" with Aubree and sharing his toys more, and not just "looking through" her or constantly pushing her away. Last spring when we initiated communication cards, he would throw them down and yell...now he knows what they mean, uses them to make choices and actually seems to enjoy them! And his LANGUAGE...oh, wow...he has progressed so much in this area and far beyond what we could have dreamed! He's imitating, using more spontaneous signs, and just attempting different sounds!
His speech therapist said he had an awesome session on Wed with them and she wishes she would have videotaped it because he was constantly imitating all the words they were saying. We visited during a session on Thurs with them for the first time and was able to witness the use of communication cards, following directions, and the attempt at language. At first we were concerned he would not be the same for them if we were in the room, but we had to at least try...and boy, were we wrong. He was showing off for everybody! And he is soooo proud of himself and yells "yay" after every little step he takes. His enthusiasm is contagious!
Most children experience a language explosion between 18 months and 2 years, and ironically, Aubree is in this stage right now just at the same time that Brycen is exploding with his own language. Could it be that she is bringing it out of him??
Please continue to keep Brycen in your thoughts and prayers because obviously all of the support and prayers are WORKING! There are many times over the last year or so that I have questioned God and what his "plan" is for us and "why." Now I am finally allowing myself to see that this is it...you can never experience the good and best things in the world, without running through the not-so-good somewhere along the way!