What is your "passion" in life?

Everybody needs a passion in life. I never really knew what mine was until recently.

My true passion today is clear to me now...Autism. I cannot get enough of articles about research, reading other family's blogs and experiences with their children on the spectrum, or sharing our stories about the battles and joys of the disorder. I thought I knew a lot before Brycen was diagnosed, but none of it prepared me for the firsthand experience of raising a child with it. I'd worked with adults and children of various ages that were affected on various areas of the spectrum for many years. I had attended trainings and read books about the disorder. That was nothing compared to the passion I have for it now. I walk, talk, breathe, read, write Autism. It is and will be my life, just as I would expect any parent to feel the same about anything that affects their child or themselves.

What is your passion in life? Do you think it has changed as the years have went by or what has made it more clear to you? Is it something you chose or something that was "dropped in your lap" like Autism was in mine?

Finding Our Place in this World

I frequently think about Brycen's future and where he may be or what he may do. Everybody has a place in this world, but I think he may have a little bit of a harder time finding the right place for him. It's not going to be easy for him with all the quirks he has and the various obstacles he faces socializing. Hopefully, this world will keep learning to accept those quirks so that it can be just a little easier on him.

Sometimes, I also sit and wonder about where our place in this world is as a family and especially me as a mother to Brycen. I used to be very social, enjoy going out to see friends, and had no trouble meeting new people. That has changed a lot over the last two years. I have a very hard time meeting new people and finding my place in a group of friends, or among my coworkers, and carrying on a conversation. It just seems like everybody else is in different stages of life, either much further ahead of me in the child-rearing, or still in the single years and enjoying those moments. Those that I do feel the same age and same stage of child-rearing seem to still be in a different world from me most of the time. I'm not sure if this is all just because I am getting older and realizing I need to re-prioritize what comes first, or if some of Brycen's inability to socialize is rubbing off on me, or if it's an actually stage that parents of children with disabilities go through.

While I may have a lot in common with some of my aquaintenances that also have a child with a disability, it seems like I fall in my own category as the working mom. I never imagined myself as a stay-at-home mom and still don't, but I know it's not about me anymore and it's about what Brycen needs. I know I'm not a bad mom because I choose to work to help pay the bills (honestly, I have no clue how families can survive on one income these days with the increasing cost of EVERYTHING!), but I feel so guilty when I have so much on my to-do list and I can't always sit down and spend that quality time with my kids. After almost 2 years of doing the work-at-home thing, I still have yet to find a balance between work, the kids, and the housework. It's very stressful to decide to work on dishes, knowing the work emails are piling up or my work phone is ringing off the hook. I frequently doubt my choice to work...and then I will doubt if I would ever make it as a full time stay-at-home mom.

I guess the point to this whole post is...where is my place in this world? I don't really fit in with the other 30+ yr old working moms with young children, but I don't fit in with the 30+ stay-at-home mom's either. I don't fit in with the typical child group, not the single-parent group, and definitely not the ones that are living the single life. I try to connect with other moms of children on the spectrum, but even they seem in different places. Whether it is different stages of treatment they are using, or they may have more obstacles in their way than what we have in our family. Does anyone else feel this way or is it just me?

Aubree & Brycen

Despite the obvious challenges, we are hoping that Brycen and Aubree will have a very close relationship as they grow up. Right now, we are still battling the aggression Brycen takes out on Aubree...and Aubree so desperately just wants to play with him!

Aubree has reached the developmental level where she is always pretending...to cook, to change her baby's diaper, to read to us, etc. Brycen never really reached this stage before regression set in. We do find him every once in awhile picking up a play phone and jabbering on it and the school has also told us he will do this during free play. We have tried to teach him to play with pretend food by having Aubree give him a cup and we show him to take a drink, but all he wants to do is throw the cup. While we have accomplished him imitating various actions in other ways, we have not made any progress in the "pretend play."

Brycen uses his aggression to communicate as we know. Since he can't say or motion to get away from him, he will just push Aubree or headbutt her over and over until we intervene and tell her she needs to play with something else. For example, we went to the library and checked out 4 train books for him. Aubree of course likes trains too because she wants to participate in anything she can with her brother. All Aubree wanted to do this morning is sit beside him and look at the book while he flipped through the pages. He then reacts to her closeness by pushing her away. Despite saying over and over to him that Aubree just wants to look, not touch, he has an automatic reaction to do this. Now I don't want everybody to think that Aubree is this little princess that is always nice to him, because she knows how to bother him just like any sibling does. She frequently does take toys from him and then runs, which requires him to chase her and then knocks her down to get the toy back. To Aubree, she thinks it is a game...to Brycen, she is taking his toy away and he just wants it back.

As I type right now, they are playing their newest "game." Aubree has become quite fascinated with girly things like play jewelry she received last year for Christmas from her aunt & uncle, and the dress up shoes that her cousins, Emma & Samantha, gave her. Mike might not like me to share this, but Brycen also enjoys these items. They will bring pairs of the shoes over to me for me to put on their feet and parade around the house while putting on bracelets and necklaces. I know this REALLY doesn't bother Mike like it might some other fathers of their little boys because we are just so happy they are playing "together" and both are happy. Aubree is getting the attention she wants from Brycen, and Brycen is getting probably some sensory input from walking around in the heeled dress-up shoes and is also walking around in the same pattern around the house which is part of his routine and OCD behavior.

Now, we have noticed Aubree has transitioned to the older sibling role recently. I have shared where she will tell Brycen it's time to eat and to sit down while watching a video. She now has expressed herself by telling him "no" when he bangs his silverware on the table just like we do, or to "share" when he won't let her near a toy of his. She will also say "No push, Bryce" when he pushes her and "be nice" when he hits her. I am so glad that she is standing up for herself and it's obvious she is imitating the exact phrases we say to him during these times. It's just very wierd to see your 2 yr old start to "parent" your 4 yr old when it should really be the opposite. Aubree has already shown such a great personality for caring. No matter how many times she is hit, pushed, kicked, or headbutted...she has always forgiven her brother and she will frequently say "I lus Bryce" which means "I love Brycen." She wants to hug and kiss him all the time and I hope this part of her never changes because she is also in for a roller coaster ride these coming years.

Should have known...

No sleep progress after the first 3 nights. He has woken up all 3 and even though we are still on the lower dosage, my hope is dwindling that this might not be our "miracle" sleeping drug.
I should have known that Brycen probably wouldn't react the way I was hoping. When has he in the past? When I expect the worst behavior, he demostrates the best...when I expect the day to go well is when we have one of the worst days ever. This kid just doesn't follow the norm. So many parents have raved about how this medication was so great for their child from the first night they took it, that I really had my hopes high that after so many months to a year of contemplating this decision, that we would finally be able to sleep. Don't get me wrong...I know all parents go through the infant stage of lack of sleep and many children still wake up during the night into their preschool years. The difference is that Brycen doesn't just wake up...he stays awake usually for 2-3 hours at a time. While he is awake, we are forced to stay awake also for fear of his safety. I went from being a very heavy sleeper before kids, to waking to no sound of my child just standing by my head.
We are absolutely exhausted. We take turns each night when he wakes, we try to go to sleep right after he does not knowing what that night will include, but there is not much more we can do in this situation but wait and see. I absolutely hate that term too..."wait and see"...the exact same thing many people implied to me after Brycen's initial diagnosis. Well, I don't have the patience to wait and see. Sleep deprivation for years has taken a huge toll on us. Napping is not possible unless both of us are home on Sundays, our one day each week that we are together (and some weeks, we don't even have that day). Brycen needs constant supervision and attention and all we do is run around all day long after him, ensuring his safety, working on appropriate play, etc. Then when we don't get a decent night of sleep, our body doesn't have time to recover for the next 16 hours of caring for him. We all miss our sleep in this house...so please, please, please cross your fingers that the higher dosage works or we are back to square one!

Here we go...

The doctors appointment to discuss medications is done and a script has been called into the pharmacy to be picked up tomorrow for the sleep medication. Lots of discussion with a very thorough and very understanding physician was so appreciated while making a big step!

She does seem to agree that more & consistent sleep for him may make his days and evenings easier on us and on him. She was very careful to get dosage correct, go over any side effects with me, answer all of my questions, as well as already review the next steps with me. It was so nice to have undivided and unrushed attention to make sure we are doing this right. She reassured me and wanted my understanding that she may want to call U of I along the way if she has questions herself (especially about starting a behavioral med soon). I like the upfront attitude she had, the way she interacted with Brycen, and the obvious care she has for her position as a doctor. Despite having to wait 1/2 hr for the start of the appt, I walked out of there far less stressed than when I first started contemplating the start of medication.

Which comes to the subject of that big decision. Brycen has been very, very healthy overall. He has only been on two rounds of antibiotics in the last 4 years and with the exception of those first few weeks of his life when battling the severe case of jaundice and having visiting nurses at the house, he has only had to go to the doctor two other times besides his well-child visits (for the two infections listed above: ear and pink-eye). We are very lucky in this aspect!

On the other hand, since I am not used to giving him medications, I think that I have put more thought into this decision than some parents. He's 4 now and the typical 4 yr old can typically tell their parents how they feel and through visual cues, the parents can tell if a side effect is happening. Since research has shown that medications affect children with Autism very differently than the typical child, it is soooo important for us to be vigilant in watching him. Brycen does not feel the same pain another child feels, so if he has a headache, he may not react by holding his head and he obviously can't tell us something hurts. He is kind of unstable on his feet already, so how will we know if he has a dizzy reaction. He already doesn't sleep well, so that is not something that will give us the hint. He tends to drool already (has low muscle tone in his mouth/jaw), doesn't make eye contact well, is aggressive, hyperactive, etc...these are all various side effects of many medications.

I think the worrisome part for me is not the actual giving of the meds...but the side effects it could cause and how most of the meds he may ever take have not even been studied in children with Autism. It's just overwhelming to think of how big of a decision this really is...and to have the support of the doctor's office that is right down the street is helping so much!

We discussed how starting these medications and trying to decrease some of his symptoms may actually help him in so many ways, and how we are never going to know unless we try. We can't cure him from the Autism, but we have a chance to help alleviate the obvious effects it has on his brain and body, so it's the obvious next step for us that is available without a waiting list and without having to travel hundreds of miles away from home and our jobs to try other therapies that may or may not work.

New town, new house, new school...calls for a whole new routine

The last two weeks have been absolutely crazy! We pride ourselves in keeping a predictable routine for Brycen as we know he relies on this to thrive and be comfortable in his surroundings.

Those who know him know how he can get stuck in a routine and if one little thing happens, it can be disaster for the next several days. Those who know him also know that he can surprise us with adapting to change when we least expect it.

Mike and I worked hard at unpacking the entire house (except for some select boxes of wall hangings and such) from the time the truck delivered on that Wednesday morning and I drove the almost 4 hours from SL to Strawberry Pt, until Thursday afternoon when the kids arrived with my parents. It was non-stop work...exhausting! We knew if we were going to have any luck at Brycen adjusting, we had to make him comfortable from the beginning which meant he could not see the new house without his belongings set up and ready for him.

We also knew he would be adjusting to a new school, new teachers, new town, new therapists and hospital, around him at the same time. All of this change would be hard for any child, any adult...and here we are, forcing so much on him at one time.

I am so happy to share with everybody that Brycen has exceeded our expectations in adjusting to everything! There was a bit of a rough start to school with him being very attached when we did an initial visit that Friday morning, and with him crying when I left him there the following Monday morning...but that was it. He eagerly gets his backpack and shoes when I tell him in the morning, walks into the school with a smile, and waves/says "bye" to me with prompts when I leave. He also rode the school van home today with NO PROTESTING! Our goal is for him to be able to ride to and from school every day. The van driver did tell me he became a little upset when she turned off the main road to drop off another little girl first...but he did calm down when she reassured him he goes home next. Amazing how only a week of going back and forth to school and he knows the direct route to our house!!

Not only has this adjustment went well, he has also proved to us that he can fall asleep on his own. We knew we did not want to carry him up the stairs to his room after rocking him every night, so we decided to put the rocking chair in his room just in case. We did rock the first night we were here, and he protested the rocking in his room at first. He is so used to rocking while I am watching TV and he kept trying to get down and wanted to leave his room. I decided I was not going through the fight every night and would just have to figure out a new routine at night for him. So the following two nights when Mike was at work closing the store, I vowed to myself that I would make him lay in bed to fall asleep no matter how upset he got or how guilty I felt. He surprised me in not protesting laying in bed at all by himself. The first two nights were very busy and time-consuming, as I would tell him I would be right back and leave the room for a minute. I gradually worked up to about 10 minutes and he fell asleep! I think I went in and out about 8 times the first night...and only about 5 times the second night. Now, over a week later, he is still doing this every single night and now we only have to go in 2-3 times before he falls asleep!

Now, as I type, we are preparing for his first appointment at the Manchester hospital for his speech and Occupational therapy this afternoon at 2. I'm going with no expectations, knowing he has proved me wrong lately in that he can fall asleep on his own and he can ride the van home from school with no problems. I know there could be protesting to a new environment and new people he will work with...but if this is the only negative reaction we see to all of this change, it reassures me that he and we have made a whole lot of progress in the last year in this area!

Top 10- Trying to find some humor!

I read this "Top 10" after another "Autism mom" posted it on Facebook today. Now, this is made to be funny...though there is definitely some truth to all of it. This just really made me laugh today! If I had read this a year ago, I probably would not have laughed and taken it much more seriously, but being that time has definitely helped me put more into perspective with a child on the spectrum, I could read this today in a whole different manner.

So here it is (taken from the Autism Support Network website and written by Lisa Jo Rudy)...

http://www.autismsupportnetwork.com/news/top-10-snappy-answers-annoying-comments-about-autism-29003923

Thank you, Beth, for sharing with all of us! I know we have never met (maybe someday we will!), but it means so much to me to have others out there that are in the same/similar position right now with this battle to lean on and get encouragement from!

Our decision to add medications to Brycen's therapy plan

We knew this day would come...the day we realized we don't have a choice but to start medications for Brycen. It's terrifying to know that you will be putting a different thing in your child's body! But we have also come to the realization that we may be hindering Brycen's progress by not using medication to help with some of his symptoms.

While medication does not cure Autism, it can help to treat some of the symptoms. Brycen's main symptoms that we will be addressing with medication are the sleeping at night (or should I say, not sleeping!), the aggression, lack of attention span, OCD behavior, and impulsiveness. While all kids experience many of these things, the extent of Brycen's symptoms in these areas is huge.

Brycen's aggression is getting worse and what we are doing to address it is not helping, so we need to look at this avenue before he really does harm to Aubree or another child at his school. The last thing I want to hear is that a child is scared of him and they went home to tell their parents that Brycen is hitting them every day. That is not fair to those children, nor is it to Brycen. Since Brycen has very little attention span for many things, this makes it very difficult to teach him new things or work on daily skills such as getting dressed, taking turns, listening to an entire book, etc. We are hoping if we can increase his attention span, that we will have more luck with teaching him new things and his focus will be better on learning. We are also thinking if we can minimize his stimming behavior, we can bring out some more language. It seems his flapping, scratching, lining up toys is interfering into so many daily things, including his ability to work on speech and sign language.

We have set up an appointment at the medical clinic here to have them evaluate Brycen and see if they feel comfortable working with us on starting these. I really feel it would be easier if a local doctor will help since if there is an interaction or side effect, it can be addressed right away without us having to make a trip or navigate the phone calls to U of I.

The thing that scares me about medications with him, is studies have shown that children with Autism sometimes have very odd side effects of the medication. While a medication that is prescribed to calm someone down may work in a neurotypical child and adult, it may do the opposite and make a child with autism more hyper.

The other things that scare me is a lot of medications for these symptoms have not been studied in children with autism, or even any child for that matter. The common medication for sleeping in children with autism is called Clonidine. This is an adult medication for high blood pressure. Interesting, huh? But that just shows that medications do different things to people with other developmental issues.

I'm realizing that every thing we start, whether it is medication or a new therapy, I am always going to be scared. It's human nature to be scared of the unknown, but we aren't going to know if there are also positive benefits unless we try. Right now is the time to try. Brycen has adjusted well to all of the change in his life these last couple weeks. We feel we have great support right now from our families being much closer to us, a school that seems to be on our side with helping him learn, therapists that want to help him, a Case manager that has so many resources to share...what better time than now!

The "depressed" days

I'm going to be very honest with you in this blog in that I HATE these days and I HATE what Autism has robbed my little boy of!
I'm also going to be honest in that it doesn't make me feel better to have people tell me "it'll be ok," "look at what he can do and not what he can't do," or "God chooses special parents for special children," or "you need to accept him for the way he is." These comments make me feel worse because it reiterates to me that those that are usually saying these comments are those with neuro-typical children.
I am not a special parent...I'm just a parent that does what I need to do for my child. That's not "special", that's called "love."
I refuse to "accept" that he can't communicate or how aggressive he is. I should not be expected to accept these things, which is why we are choosing to have him in various therapies and attend school so that we can hopefully work past these issues even if it's just a little. If I was accepting this, to me that means I am giving up hope for what he may be able to do in the future.
Every single day, I do look at what "he can do", but it's very hard not to see the things "he can't do" when it is right in front of me all the time. It's conference time right now for many schools, and parents are hearing and sharing about how awesome and smart their children are. I am trying so hard to be happy for those people and to remember that it's not their or my fault that our children are different...but deep down, I do still have feelings of resentment. I have to look at the things "he can do" every day, just because that is what gets us through the day. I try to brag him up as much as I can either through the blog or my FB comments, so on these type of days, I can look back and read the great things he can do to help me through another bad day. If I didn't look at the things "he can do", then I wouldn't know what to work on with him every day and we wouldn't be seeing the little bits of progress every once in awhile out of him.
Who the heck knows if "it will be ok"? Not a single person in this world can give him any kind of prognosis for the future. The books and doctors say "try this or that", but then they follow with "it doesn't work for every child or even sometimes the majority of the children." Hmmmm....

So the point of this post is just to let me get out my grief for the day. I don't expect comments, and definitely don't want to be told how I should feel or anything like that. What I really, really, really want...well, I'm not even going to go there! But I'm sure you can definitely guess!