Moving...the biggest transition of all!

Everybody knows that Brycen does not do well with transitions most of the time. He gets mad on the weekends when I don't get him dressed right away because he thinks he needs to go to school. He'll cry, pull at the door, get his shoes, throw things, hit me, etc for sometimes an hour before he realizes it's ok and we have other things to do.
I am so, so, so nervous for this afternoon when he comes to the new house for the first time. I am also very excited, but the nerves have pretty much taken over my body and I wish some Autism-God could tell me it's going to be ok.
I tried to put off as much packing as possible of the visible things to help guide him through this. He would watch me pack boxes, follow me around, look inside and a few times he even grabbed things out that I was putting in. Unfortunately due to meetings on the day before the move, I was forced to do a bunch of packing in his presence the last couple days. Overall, he did ok. When I think back, I notice he was definitely more hyperactive, more irritable and crying over smaller things than normal, and like I predicted, even more aggressive towards Aubree. But overall, it wasn't that bad. He has spent the last several days with my parents in Evansdale as we knew we could not allow him to see our belongings moved onto a big semi. Though I did figure, he would have loved to see the semi parked in front of our house...but I did not even entertain the thought of having him at either house for the pack up and unload. We also have not allowed him to see the new house before this as we have determined it is easier for him to accept the new house with his belongings in it, instead of a new house with the previous tenants belongings or empty.
So today is a big, big day for him! The last time we moved to the different house in SL, he was still regressing and we weren't sure what was going on. The move before that to Storm Lake, he wasn't even one years old yet, so as you know, he was still considered "neuro-typical" at that time. It really didn't phase him then. A lot has changed in the last couple years and we need to protect him more than ever from these upcoming transitions.
So while this move is very exciting and very much needed for us at this time, the next 10 or so years of our life will be a roller coaster for Brycen, as each move will probably present different challenges as he gets older. Even if he walks into the house, running and happy today...we know that doesn't mean the transition is over. It's actually just begun as he has a new school to start at, new neighborhood and parks to get used to, new therapists to work with, new Fareway store to put together with where we can find Daddy now, new Wal-mart with different layout, new everything. While some kids wouldn't even be phased at a new store they visited, I'm not sure how Brycen will grasp and comprehend his Daddy in a whole different environment. The transition will probably take months.
I've had multiple people email or ask me how I think he will handle it. That's the thing with Autism, you just never know. It could go far better than expected, or far worse than expected...so I guess we just don't set expectations for things like this because nobody can predict anything. He may be fine for a week or two, and then all of a sudden have two meltdowns in a week or refuse to go to school willingly, or cry/make more noises. OR this could be a fantastic environment for him and maybe we will see an improvement in speech right away! Nobody knows...so I'm not ignoring your question (well, actually I am!), but I really can't answer that because I really don't even want to think past getting him through the first glance and walk through of his new home. Everything else we will just take day by day, minute by minute if needed.

"What is Autism?"

I frequently need to use other's words to describe my feelings, whether it is famous quotes or blog entries from Autism Speaks. Sometimes I feel trapped in my life, in that if I share exactly how I feel about something, someone will be upset. I have kept so many of my feelings and thoughts inside for the last year or longer and since I feel like I can't share those, I use what other people say to share them for me. Some day, I will get the strength to share exactly how I feel and be able to put it into words so others will understand, not get angry with me. This is me...and I'm starting to learn if you don't like me (or what my life involves, such as Brycen and advocating for all others with disabilities), then you just don't have to be a part of it. On most days, I feel so much support from so many around me...and then there are other days where I am so lonely and sad that this is how it will be forever. To those who send me simple messages of "you're doing a great job" "you're a good mommy," please know that you are my backbone right now. I know every mom and every person needs to hear they are doing a good job, it's part of human nature to seek out encouragement...but I feel that I need it more right now than ever. It makes me sad that I do not feel I have the support and encouragment from some of those people that are supposed to be the closest to me. I'm also sad that I sometimes have had to end relationships with others because I need to focus on what is going on in our lives. It's not because I am selfish or self-absorbed, but it's because I have no choice but to do that. I am only one person that can deal with only so much drama, and at some point, I have to push that aside and come to terms with there are two little kids that need me more than ever (one little boy especially) and they DESERVE a happy, determined, and loving mommy. I have to make choices about where we go, what we do, who we see, how much to do in one weekend, because of that reason. I'm also learning that those who really and truly understand, are the ones helping me figure these things out. The ones who don't, are the ones who are still questioning why we can't do that or go there or go at that time.
So, once again, here is another blog entry from Autism Speaks. This time written by a person that is friends with a parent of a child with autism. I feel like this is me writing "What is Autism". The part about hearing "I love you" or "Mommy" or the "pleading and begging" and the "not taking for granted", "frustrated grunts", "communication in scream"...this is our life.
http://blog.autismspeaks.org/2010/09/25/itow-what-is-autism/

Brycen's "burst" of language

Words cannot express my excitement over what Brycen has been doing the last couple of weeks!! I had a conversation with the SLP in Spencer today during his therapy session and shared what we have been noticing and received some fabulous feedback from her.

Here are the UNPROMPTED words that Brycen has said over the last couple weeks:
Elmo, dada, hat, apple, shoes, juice, blow, go, cow and pop.
The first 6 words were heard at home and the last 4 I heard today during his session with her.

While it is absolutely exciting to hear these words coming out of his mouth (they do not have all the sounds so once again, they are called word approximations), it is over the top that these words have all been used in the appropriate context! That means that every single time he has used these unprompted words, he is using them appropriately!! For example, he was looking in a bag I had packed for Aubree of toys and he pulled out the Elmo stuffed animal and said "Ebo." It wasn't prompted and it was him doing the labeling correctly! Another example is when the SLP sits down on the floor with him with the bubbles and she waits for him to communicate what he wants. He then says blow "bo" to let her know he wants her to blow the bubbles. These are huge, HUGE, HUGE steps in this whole process of teaching him functional communication (I can't emphasize that enough!).

I have been thinking all afternoon about how to explain this to those who are not familiar with autism and any disorder that involves a speech and language delay. I think I have come up with a "story" that explains it best.

When you see or hear something, your body sends a message to your brain and then your brain interprets what you see or hear and then sends a message back to your mouth to respond. With Aubree, I can say a word and she watches my lips and hears what I say, that message is sent to her brain to interpret what she heard/saw, and then her brain sends a message back to her mouth/lips and she then repeats the word I say almost perfectly (her developmental level is right on with her chronological age of 2 yrs 3 months). With Brycen, he may hear or see me saying that word, but when the message is trying to be sent to his brain to be interpreted, his brain cannot "read" the message correctly and then either doesn't submit a message to his mouth or will send a mixed message to his mouth. This results in either no response from him or the sound he will make is completely different than the sound/word that I said. Example: we may ask him to say a word with the sound "m" but he will make the "p" sound.

I am no expert on speech, language, and communication disorders, but I find myself well educated in this area through my education, my research and experience with Brycen, as well as my many years of experience with many other adults and children affected in this area of their lives. To me, it seems like Brycen's brain is missing some of those connections that are in teh brains of neuro-typical children. While it also seems like those connections are trying really hard to interpret and send the correct messages, hence the newer sounds and few unprompted words, the connections aren't staying there which is very frustrating for everybody involved. It's like they disappear!

I hope this all makes sense to you and maybe you can give me some feedback on similar "stories" you know of how this works. The brain is obviously very complex and in all honesty, I HATED science classes in school, but it's different now. I don't really see it as science anymore, I see it as reality and how it is affecting Brycen. I am really curious about what his brain looks like on an MRI now compared to the brain of a neuro-typical child of the same age. Maybe when things settle down in our life, I will contact U of I for more testing in this area. It'll be so nice to live much closer to U of I soon so these things are more feasible to fit with our family lifestyle and work schedules!

Functional Communication

The definition for functional communication is "the ability to receive or to convey a message, regardless of the mode, to communicate effectively and independently in a given environment."

The reason I want to use a post to focus on functional communication is so that people understand that communication can be in so many ways. This includes verbal, sign language, or a communication device (high tech or no tech like PECS).

At this given time, Brycen has no functional communication. He can imitate some sounds and noises, and can say many word approximations with verbal prompting from us, can use 5 signs with prompting, but with the exception of a few "spontaneous" words lately, he really has no functional communication. We have discussed starting him on a simple communication device that gives him a choice of pictures, he lays the picture on the device and when he pushes a button, a magnetic strip "reads" what picture it is and says the word or phrase out loud. Therefore, Brycen is given a "voice" through this and also is making choices which is something he is also very far behind on.

When a person's cognitive skills are diminished, which means they do not always understand what you are saying to them, the medical diagnosis for this is Mental Retardation. Brycen has been given this diagnosis because during testing, he cannot convey to us that he understands what we are asking of him. Whether this is because he actually has MR, or if it is just a result of the Autism and lack of an attention span to concentrate on simple tasks during testing, the test results determine that his cognitive skills are in the moderate MR range. As Brycen's communication skills and attention span continue to get better, testing may be more accurate and be able to distinguish between what the Autism is causing and where his cognitive skills actually are.

While Brycen may never be able to verbalize more than a word or two at a time, we are hopeful that someday he will have "functional communication" whether it is through a communication device or sign language, or a mix of the two. Reality is that we may never be able to have a conversation with him, but if we can get to the point that he is able to convey to us the necessities of life like if he is hungry, thirsty, tired, angry, or if he is in pain...that will make a world of difference in his and our life and should be able to decrease the frustration on both sides.

Please continue reading and cheering for Brycen as he continues to make slow, but sure progress! Every email, every blog post, every facebook message (or "like") to our comments about him imitating a new word or learning a new sign is very, very encouraging to us. We know who our support is and it's all of you that convey to us that you are cheering us along through this journey and celebrating with him every step of the way! We are grateful to those who have never even met Brycen, but choose to follow this blog and give us words of support and encouragment along the way. We could not do this alone, and without you we would not be where we are today and Brycen would not have made the progress he has to this point. It can only get better from here if we just keep leaning on all of you for support!

A glimpse into our nights

I know we have always talked about how Brycen has sleep issues, but we have never given an idea of how it all plays out. So since Mike has been on the other side of the state for a few weeks now, I have been the one to get up with Brycen during the night now. In the past 11 nights, Brycen has been up during 8 of them. We have the same routine each night (with the addition of bath every 2-3 nights) and he only naps on select days when we can tell it is really wearing on him (naps typically make the following night worse than usual).

So here it is...we start picking up toys around 7 or 7:15pm and then move into the bedroom to get our pajamas and overnight diaper on (it's thicker to help prevent him from leaking out on most nights). He then sits at the table in the same spot for his 1 tbsp of liquid Melatonin mixed with 6 oz of juice and a snack. We then attempt to brush teeth...sometimes it goes well, sometimes it is a pain. After teeth, he gets his blanket and sits in the rocking chair while waiting for me to finish with Aubree so I can then rock him.

Let's take a quick break to discuss the rocking: Brycen has put himself to sleep in the past on occasion but we are finding he gets very upset when we are not near him as he falls asleep and the rocking seems to soothe him just like with babies. Remember he is pretty much a baby in a 4 yr olds body so this works for him and it works for us. I know some people have made comments in the past that this is inappropriate for his age and we are setting him up for never learning to fall asleep on his own...but my answer to them is: Do they have a child with Autism and sleep issues and do they want to come over to my house to battle 2-3 hours of bedtime every single night?

So after he falls asleep, I lay him in his bed. On the good nights, he will fall asleep around 8pm and sleep until anywhere from 4-6am! Most often though, his nights are broken up. I have been keeping track the last 11 nights, and it seems like he wakes up like clockwork between midnight and 1am. I am guessing this is when the Melatonin has been metabolized and his brain no longer has something telling him to stay asleep. He comes running in to me with his pillow and blanket and I let him lay with me. I have attempted to put him back to bed, but this results in screaming and hitting (thus not a good option when you have another child asleep only a few feet away). So, I have either let him lay with me or lay on the couch, or have even tried rocking him. After a few nights, I have realized not to even attempt to get him to sleep for at least an hour. He is wide awake and full of sensory-seeking at this time. Rubbing his hair or patting his back or arm sometimes keeps him from moving around and staying calm. We don't allow him to play with toys, we don't turn on lights or the TV, we don't talk to him (besides telling him to close his eyes and sleep ) or give him a drink or snack...all so we are not giving him any ideas that it is time to wake up.

This picture was taken on a night when he finally crashed after 3 1/2 hours on the living room floor. I had given up on rocking him and he wouldn't lay on the couch by himself so he sat in the middle of the living room floor until he just collapsed into a ball and fell asleep.

The time he is awake has ranged from 2 to 3 1/2 hours each of these nights and he has been awake most mornings around 6am for the day. So if you calculate it out, he is getting possibly 4 hours of sleep during the first stretch, and another 3-4 hours during the second stretch. The recommended amount of sleep for a 4 yr old is 10-13 hours a day. Brycen rarely even gets that 10 hours and I can't think of a time recently he has come close to 13. I do understand that like adults, all children are different in how much sleep they need but my child isn't even reaching the minimum of that average the majority of time.

Now to the next question of sleep medications. Sleep medications are only intended for adults due to an addictive ingredient that is usually in them (hence the warning on most meds that say not for long term use or use no more than 7 days without talking to your doctor). There are a couple of meds that have been prescribed for children with sleep issues, but these meds aren't even a sleep med. The one that I know if is a high-blood pressure med called Clonidine. When the time comes, this will probably be the medication we choose to try...but we have reservations about putting a 4 yr old that weighs a lot less than most kids his age on a prescribed medication that isn't even marketed for the purpose of sleeping.

So all in all I am exhausted!! I am looking forward to a break this weekend when Mike comes home for a couple nights...though I'm sure my body has now been trained for minimal sleep so I'll probably be awake right along with both of them anyway.

New words!!

Aubree and I sat in on Brycen's speech and OT today as I try to do every few weeks. He is a child that doesn't "perform" as well when he has Aubree and I as distractions so sitting in is not always the best for him. Today he did ok, he actually was seeking me out to watch him as he did his "work." I could tell he was tired as he would daze off during transitions or towards the end of his 5 minute activities, but he pulled through like a champ.
Anyway, the therapist does not always share every new word approximation he says with me as I think she wants to probably have me hear it for myself and to make sure it is actually learned and not a fluke. Today I heard so much more! I've recently heard him label a cow and cat at home, but today I heard him say "sss" for horse! I also heard him say tractor "tra to"! Of course this was all done with prompts from the therapist, but all of these new sounds and recognition of the item is huge for him!
When Daddy called tonight, I held up the cow and horse toys we have, as well as one of his tractors and asked him to tell me what it was so Daddy could hear...and he did it! He's very hesitant and quiet about it as if he's not sure if that is right, but we could clearly hear him. Sooo exciting!!! Yay Brycen!