"Autism Rocks...

...and rolls and spins and flaps and loves and laughs."

I saw this quote recently on multiple websites/blogs but can't seem to find the person that said it.  This really describes Brycen right now...literally!  For the past few weeks, he has been on constant stimming-mode, very aggressive, not transitioning well, not accepting change, etc.  When we first started his medication a few months ago, many of these things decreased.  We know that these things are never going to disappear, but our goal is to minimize what we can so it is not interfering into his daily life as much.  At his last appointment with the child psychiatrist, we discussed the option of increasing his dosage as summer approached knowing how routine changes can affect him.  It's not that I want to continually rely on medication to help him, but it's obvious that he benefited from starting the medication many months ago.  Well, with the recent changes in our lives, we are starting to see increase in the stimming again, as well as his irritability and not accepting the changes he was accepting before.  I put a call into the nurse and she just called back to say it's ok to increase to 6mg instead of 4mg of the Fluoxetine, so we will be starting that tonight already.  It would be great if we could go back to 4mg after we are moved and settled into a new routine, but if not, that's ok too.

The plans for our move are coming along well!  I am taking Brycen to a new therapy clinic in the new town next week for an evaluation, and will also be meeting with the new school to discuss plans for that change.  We have found a rental house in town so we will be officially moving over June 14/15.  His respite and SCL services will be staying the same, and the paperwork is already moving forward for his transfer to Jackson County Case Management.  I still have multiple places to call regarding his services, but these were the most important ones for him so I'm feeling accomplished at this moment. 

Over the last year, I have had many people ask me the question about why we choose to continue with the moves with my husband's company when we know that Brycen has a hard time with change.  Honestly, my answer varies on the day.  Sometimes I think it is not the best for him, and other days I feel like throwing change at him is just preparing him for the real world.  I know that my husband's job provides us with financial stability, a family-friendly company, good insurance, and in several years will give us the opportunity to be settled in one town.  Every family makes sacrifices to better their lives and this is one that we signed up for before Brycen was even born, which means obviously before he regressed and was diagnosed with Autism.  We choose to continue on this path knowing the final outcome will be great for all of us, especially Brycen.  The changes that come along the way will present him with many, many challenges...but challenges make us better people, including a child with Autism.  Life doesn't always go as we would like and I cannot protect him from the inevitable change he will face throughout life, so I feel that preparing him with regular change now when he is young will help him adapt and accept later in life. 

Brycen's latest happenings!

A few things to update from the last week or so...

1. Brycen is doing GREAT with his trial device! He knows how to navigate from page to page, how to clear the words, and how to turn it on/off. He uses it at home every day, has used it at a few speech therapy appointments, in the community a couple of times, and at school during Kindergarten round-up last week. I am also sending it to school with him this week as it is our last week of the trial and I think he is ready for it. The teacher and associates are just as enthusiastic about giving him a voice in place of the basic PECS cards he chooses from. I programmed in a few of their circle time activities so he can just push the button to tell them what "job" he wants for the day and what kind of milk he chooses for snack. Next Monday is his last day with the device and then we just sit & wait while people that don't even know Brycen make a decision on if this is the right device for him, will it benefit him in the long run, and will they pay for it. Very scary to think it's a possibility that it could be denied:(

2. We had a conference on Monday to discuss options for Kindergarten. It was agreed upon that Brycen will attend the every day/all day kindergarten class next year. While he cannot do all the things that the typical child going into kindergarten can do, he needs that consistency of all day/every day to make progress and keep his routine in place. His "score" on the kindergarten testing was actually a 22. When his teacher showed me the rating scale, the lowest category was 25 which was the bottom part of the 3 1/2 yr old level. While you would think this would upset me to see his score not even be on the chart, it actually reassured me that we know exactly where he is developmentally. 1 1/2 years ago at U of I, he was at a 16 month old level with communication...last summer at his first speech evaluation, he was at an 18 month old level...and now it seems like we may be getting closer to the 2 yr old level. While his actual speaking is not at this level, his other ways of communicating and understanding what is being asked of him is progressing him along. The discussion will continue over the next few months and through his IEP meeting in May about having a 1:1 associate with him. The feedback so far is that it is very important to do this to set him up for success!
In addition to all of this great news, we also learned that Brycen DOES qualify for Extended School Year! Last year, the old school district was very adamant that he had to show regression following an extended break from school before he could be approved...but this district says he meets other standards that qualify him. Mike and I hadn't even asked about this yet and were very surprised when his teacher pulled us aside in the hallway to let us know they discussed it. This is just one more thing that proves this school is very good at advocating and supporting special needs. He doesn't need to be in a secluded special needs school to get the support he deserves if he is here! We aren't sure of the dates yet, but I believe it is spread out over the summer over a few weeks. It'll be so beneficial to him to keep that "foot in the door" so to speak. As a parent, I will do anything in my power to prevent regression again. We've "been there, done that" when he was 2 years old, and when the district told us this last year, I was on a quest to get other services to keep him going (which is when we started speech and OT at the old hospital clinic). I don't care if that would have prevented him from qualifying then, but I would rather him be home all summer and me have to work my tail off to help him stay at his level, than to risk him going backwards again.

3. On a not so good note, Brycen did one thing yesterday that I have been dreading. When I had my back turned to him while putting on my shoes, he opened the front door on his own. We have been lucky in that his fine motor skills have not allowed him to do this before, but I guess he has now figured it out. As you recall, we recently started having him wear an identification bracelet for when times like this would come. He does not understand the lock on the knob yet, so we are safe for the time being as long as we remember to keep it locked. He is also very cautious about being away from us still, so hopefully that will be in our favor with this newfound skill. It's just really one of those moments that scared me and made me realize how important it is for us to be one-step ahead of his progress. I think we are doing pretty good so far and hoping we can continue to do that in the future as he gains more "skills."

4. Brycen has been consistently taking his new medication for the past 2 1/2 weeks. After some trial and error, we found we have to mix it with chocolate milk to hide the bitter taste. While we haven't noticed any improvements in his OCD behavior and anxiety, we have not noticed any side effects either. She did say it takes up to 4-6 weeks to see results and because he is on such a low dose, we have the ability to increase it too. We return to see her the first week of April to evaluate.

4. Here is the link to Brycen's team page for the Iowa Walk Now for Autism Speaks that takes place on Saturday, June 11 in West Des Moines. We have 23 walkers signed up already and would love to have even more come out and support him during this special day. We are also asking that everybody consider a donation to the team. No matter how big or small, every dollar counts towards research and support of those diagnosed. The statistics keep rising and it's very scary to see that...and we need all the help we can get to the bottom of this disorder! We NEED your help!
http://www.walknowforautismspeaks.org/faf/search/searchTeamPart.asp?ievent=447324&lis=1&kntae447324=3DB34045D82E43CB8B00563398FA3B7A&team=4010797&tlteam=0

Outcome of Psychiatrist Appointment

We met with the Child Psychiatrist this morning to discuss options for medication for Brycen to help with his stimming, aggression, and obsessive behavior. It's been awhile since I've had someone ask so many questions about Brycen and his everyday behavior! Since so much of this behavior has been going on for a couple years, I find myself just going about my day around it. I don't think I even notice some things that he does until I am directly asked about it. I'm guessing this is part of that "acceptance" piece of the puzzle where we just have accepted that he has these "quirks" and we just go on as it's so normal to us now.
Anyway, she briefed us on the 3 different classifications of meds that treat 3 clusters of behaviors. After our discussion of his behavior, she concluded that she would like to treat the cluster of repetitive/anxiety behavior first. The other two clusters are aggression and Attention Disorders. While some medications help with all 3 or two of the clusters, some are very specific to a certain behavior and of course have a lot more side effects, especially with a child so young.
The decision was to start him on 4mg of Fluoxetine (Prozac) every morning. If side effects happen, she said it will be seen within the 6 hours after giving him the dose hence the reason we want him awake to spot the side effects. The main side effects that could happen but typically go away after a few days are headaches, stomach aches, etc. Since many studies have shown that people with Autism react very differently to some medications, she said if he becomes more irritable and anxious than he already is, then we will need to try something else. We are starting at a very low dose of course and there is room to go up if needed. He will continue to take the Children's Benadryl and Melatonin at night to help with sleep.
Tomorrow will be our first dose so I'll make sure to keep everybody updated on how these next few days are. Watching for side effects will be interesting as he doesn't really seem to feel most pain and of course has no way to tell us if he is feeling differently.

P.S. On another note...Brycen's trial Alt Chat device should be getting here next week!!! Once we try it out for a few weeks and send it back, we can start the process to order his own!

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.

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!