One year later- Where is Brycen now?

This month marks one year since Brycen's official Autistic Disorder diagnosis from U of I. What a year it has been!
I wanted to summarize where Brycen is now on his communication skills and various other areas we are working on. I apologize again for the length of the post, but if you really think about all the areas that Autism affects in his life, this is actually quite short!

VERBAL: With the exception of two words, all of Brycen's speech is prompted by us. About 95% of his words are considered word approximations as he does not use all the sounds present to say the entire word. For example, juice is one of the words he will occasionally say without a prompt, but it sounds like "ju." Mike and I estimate he says this word unprompted about 5 times each week, so not even daily. The second word that is sometimes unprompted is "no" and this also does not sound like "no" but is more "uh" while he shakes his head. Now to explain what I mean by "his words." Brycen has very few words he uses that can be understood by a very trained ear...estimation right now is probably 30-40. Most of these "words" only have one sound/syllable such as bubbles is "bu." Someone that does not spend a lot of time with him, would probably only understand a handful of these words since most of the sounds are missing. Compared to a year ago, I think he only had 5-10 imitated word approximations at that time, so he has shown some progress. Definitely not functional communication or conversations like the typical 4 yr old, but we take pride in every single word he does say because we know he has to work so hard for that!

OVERALL COMMUNICATION SKILLS: Brycen will now wave to someone to say "hi" and "bye" with prompts from us about 90% of the time. He will also imitiate both of the words with prompts of "say Hi" or "say bye." One year ago, Brycen was very hesitant around strangers but since he started school and therapy, he has grown so much in this area. He rarely does his yell at other people unless there is something else factoring in, such as it's time to eat, or he is just not having a good day. His eye contact is awesome! Of course, it varies depending on the day and the distractions around him, but overall he can maintain eye contact for a few seconds with most people. An example of when his eye contact will falter is at the doctor's office this week when the NP had already attempted to listen to his heart and lungs, and we were then trying to have him open his mouth so she could see his teeth and tonsils. He was already very irritated, so at that time his eyes would not meet ours and they were actually rolling around a lot almost in imitation of what happens during seizures. Brycen's gesturing and pointing has also improved! He can make more of his needs known, such as hungry or thirsty, he will point to the fridge or cupboard. If he wants to go outside, he will typically get his shoes and bring them to us with no prompts. When I point to something across the room, he frequently can follow my finger and find what I am talking about maybe 60-70% of the time. He is imitating actions and noises more than ever! This was an area he was really lacking which was making it very hard to teach him sign language. He just couldn't grasp the idea of imitating what we were doing with his own hands, which resulted in hand-over-hand all the time. This is also helping in the area of consonant sounds with attempting to verbalize things. I really hope this continues to improve, as it is necessary for a child to have this skill in order to learn from role modeling and verbal and non-verbal speech is basically learned through this.

SIGN LANGUAGE: Brycen currently uses the signs for more, please, thank you, and eat with prompts from us. We are now working on the sign for want, as the SLP is incorporating this with the 2 word phrase goal. So we are prompting him to sign "want" and then say a word. She started this on Wednesday, so we came home that evening and practiced with bubbles. I showed him the sign for want, used hand-over-hand, role modeling, and verbal prompts for about 1/2 hour and it didn't take long for him to figure out a modified version of the sign! We were so excited and he was so pleased with himself! This sign came so much faster than the others due to his increased ability to understand imitation. We will continue to work on this until the SLP gives us instructions on the next phase.

PICTURES: This is one area we really need to improve on. We have many pictures already made to help him transition and to know what to expect, as well as pictures of activities so he can make choices. Laura has found in speech therapy that he no longer needs pictures of activities to choose from as he understands what the choices are when she verbally tells him, and he uses pointing to tell her what he chooses. We also no longer need the picture schedule of brushing teeth as it now has become so routine to him, but the pictures of various visitors or houses we are visiting are still helping. This just prepares him for the change, though we haven't needed to do it every time as we forgot to get Erin's picture out the other day when she came over, and he was just fine!

BEHAVIOR: Brycen is still very aggressive. Most of his agression seems to stem from wanting to communicate something but not knowing how to do so. He does not have impulse control so when he is mad, it is immediate hitting or head butting. He throws, yells, hits, and pinches when he is angry and unfortunately, much of his anger is focused towards Aubree. Even if the situation is not even about her, he will seek her out to hit her on the back. Typical Time-outs are not a good match for Brycen. He can't be left alone, nor can he sit still due to his hyperactivity, so our method of discipline is to remove him from the area and go with him to his room to talk or just sit with him doing something else, or we remove the item causing the problem such as a toy or something. Brycen is easily overstimulated, so it does seem that aggressive behavior happens more at these times. We have been working on using a basic sensory diet and need to improve on this in that we provide him with at least one sensory activity including gross motor skills each hour to get out some of that input he is seeking. I hope to see improvement in this area in the future now that we know more about sensory diets and enlisting the help of the school to do this during the day too!

SLEEPING: Well, this is up and down. Sometimes he has weeks where he sleeps all night (9-10 hours) 5-6 times. Other weeks, he may only sleep one night through. He is still receiving one tbsp of liquid Melatonin in his juice about 20 minutes before bedtime to help him calm down and get sleepy. We still debate starting other medications for sleep right now due to his age and the side effects. My understanding of his sleep issues is that he seeks so much sensory input all day long, that his body still craves this during the night, so he may wake up needing to move around or needing that touch of another person to calm him. The other side is his lack of natural producing Melatonin. The typical person's brain continues to produce Melatonin while they are sleeping to keep them asleep. Brycen either doesn't produce any or he metabolizes what he does produce very fast, therefore he can't stay asleep.

ATTENTION SPAN: Anyone that spends even 5 minutes with Brycen will notice the constant fidgeting and movement. While he has the attention span to watch a 15 min episode of Curious George or Thomas the train, he has to be moving at all times. While I am typing this out, he is watching Thomas the Train on IPTV, and he is constantly moving his legs up to his head, rubbing his hands down his legs or arms, turning to lay a different way on the couch, etc. While this may be just sensory input he is craving, he could also be eventually diagnosed with ADHD since the correlation between ADHD and Autism is very high. For the time being, we do not want to medicate him for this and will continue to provide him with a lot of sensory input to help in this area. His attention span on structured activities like puzzles and books has increased tremendously! Originally his goal for speech therapy was to use a timer so he would stay on task for 5 minutes for each thing. Laura recently informed me that she no longer needs to use the timer as he can easily stay on task for 5 minutes, and if he is having difficulty, he is responding well to verbal prompts that he needs to do it so many more times until he can be done.

STIMMING: Brycen still does A LOT of stimming...lining things up, piling them together, shuffling toys around, running back and forth, flapping his hands, etc. We do redirect him on many things, but we also decided some things are just going to be Brycen such as lining things up. There is no harm right now of him wanting to line 10 toys up, so why make it a big deal? We do redirect the things like piling and shuffling as that is far from appropriate play. Brycen definitely has a "touch" of Obsessive-Compulsive disorder which also has a high correlation with Autism.

SOCIALIZATION: Over the last months of summer, Brycen has been showing more and more attention towards Aubree. We really have to give Aubree credit for this as she is great about watching what he is doing and then adapting to that so she can be involved. Some of the things they do together is each grab an end of a toy and run across the room. No, this is not typical play for a 4 yr old and 2 yr old, but it's something they are content to do together and requires Brycen to acknowledge and pay attention to Aubree which is the first step. With other kids (typically it is only the older ones that understand what to do with Brycen), he does not pay much attention to them unless they get in his face and take his hand. An example of this is when we visited for Ethan and Morgan's birthday party in June. Ethan took Brycen's hand and led him around the yard showing him things...before and after this, Brycen really did not even acknowledge Ethan and being outside with him, but once Ethan initiated this activity, Brycen went along with it. We have a long way to go in this area, and I honestly never expect him to reach the developmental level that corresponds with his chronological age just because this is a huge part of Autism. My hope for him in this area is to be to the point that he can be a typical kid in having at least one good friend to eventually invite over for sleepovers. I'm trying to be realistic in this area.

Now that I have typed away for almost an hour now, I'll save the summary of his goals for his new school year for the next post! I have high hopes, but also realistic hopes, of this school year and the potential for progress.