Brycen & the Dentist

Brycen had his dental procedure completed this morning.  He did awesome and we have noticed no side effects from the anesthesia to this point.  Unfortunately, the tooth could not be saved (it was a baby tooth in the back of his mouth), but we did find out that the dentist is almost positive there was a developmental defect in the tooth where the enamel did not form properly so it really couldn't be prevented. 

Brycen getting sleepy after the oral meds.

Brycen's tooth that was removed...the top
had a huge hole with the nerve showing.

We're not sure how much Brycen understood of our visit to the hospital, though we do know the oral sleepy meds they gave him shortly after we arrived has an amnesia effect which prevents him from remembering the need to hold him down for it or anything else.  Once he was in the "operating" room, he was given a small amount of gas in front of his face to put him to sleep further.  Then they were able to administer the rest of the anesthesia through an IV in his foot.  He came out of the anesthesia great...and was even a big boy to sit on the bed to be wheeled back to us in the private room.  He did start to cry for a few minutes, but calmed down within 10-15 minutes and was ready to watch YouTube train videos while we waited to be discharged.

Being wheeled back to us after recovery.

Watching YouTube train videos while waiting for discharge.

Due to it being his back tooth that was removed, he needed a spacer inserted to prevent his 6yr molars from coming in crooked.  Unfortunately, the spacer is something that might bother him and could possibly pry away from his gums if he wanted to.  If he does that, we are to return to the dentist to have her check on it, as well as the next sets of molars will be watched.  If they do come in crooked, he may need a future procedure to have those removed as well to prevent further problems.  Otherwise, we are in the clear until his next appt in March.

As of right now, I understand that he still needs to be watched over the next several days as he may have some hidden side effects to the anesthesia such as regression.  We are not seeing anything right now, but since Autism is a neurological disorder, anesthesia can interact with the brain in other ways that it doesn't for the "normal" child.  Thank you to everybody who gave advice over the last few days as we prepared for Brycen's first time with general anesthesia!  I appreciate all the knowledge and support during a very nervous time!

Genetics Follow-Up

I spoke with U of I Pediatrics Genetics this morning to follow up on the results of the bloodwork we sent in for Mike and I several weeks ago.  With all the excitement with the move, new babies, and end of school year, I had forgotten about this until another ASD mom mentioned their results on Facebook.  Anyway, when I called this morning, the supplemental report stated that the duplication that was found in Brycen is also found in Mike which means while it is inherited, this specific duplication is not a direct cause of Brycen's Autism otherwise Mike would also be on the spectrum. 

After speaking with her and then calling Mike to report the results, it still lingers in my mind that Mike had a speech delay when he was younger also.  Though the delay did not accompany other Autistic behaviors/symptoms, it was still a significant delay.  The chromosome that is duplicated is in the area of memory, language, and learning.  Is this just a coincidence? 

Also, dementia has been in both sides of our family (my paternal grandmother and Mike's maternal grandmother)...could this duplication be in Mike's family?  Could I also carry a gene that when mixed with Mike's genetic make-up, it puts our kids at higher risk of dementia later in life?

Genetics is absolutely fascinating to me!  I don't think my questions will ever end with this.  Obviously, genetics is not the key at this time to determining Brycen's Autism, it is still important that we continue to follow up with our genetics physician every year.  This gives us the chance to have more testing done as it becomes available and possibly get answers some day whether there is a link to genetics or not. 

~Genetics Update~

I received a phone call from the University of Iowa Hospitals- Genetics Clinic this week.  As you know, we took Brycen in February to have his blood taken and tested to determine if the Autism can be linked to genetics.  There are always good and bad things to doing more testing...the good thing with genetics is that if it comes back positive in one area, we have our answer as to where his Autism came from...the bad thing is that only 95% or so cases of Autism can be linked to genetics AND if is is positive, that means that one of us gave him the gene (or combo of both of us) so guilt may follow the outcome.

Deciding to go ahead with genetics testing was not on our priority list when he was diagnosed.  I believe we needed to work through the grief of having a child diagnosed with a life-long disorder and to start on the task of getting him as much help as possible to help with the symptoms and hopefully begin to see improvement.  We decided that it was time to pursue genetics last summer (2010) so about a year after his official diagnosis and almost 2 years after he started regressing.  We called U of I to schedule an appointment and was put on a waiting list for all the outreach clinics in NW and Central Iowa.  When we were moved back to the Eastern side of the state (closer to U of I) in the fall for Mike's job, I called to updated our address and phone number and asked about getting us on the waiting list for this area.  It just so happened that they had started scheduling out February appointments so I booked us for the first one available that month in the Cedar Rapids clinic to save us a little drive time/gas.

Genetics testing consisted of a physical exam, measuring certain body parts, noting markings on the skin from an ultraviolet light, as well as many questions about pregnancy, birth, and anything & everything in his life up to this point.  Of course it also involved taking a couple vials of blood from him also.

The first thing they were testing Brycen for was Fragile X Syndrome which falls on the Autism Spectrum, but is in it's own category because it is linked to the mother's chromosomes.  People with Fragile X have some very distinct facial features and Brycen does have a couple of them so it was a logical test to have done.  His test came back negative, therefore if I am a carrier for this syndrome, it's not too prevalent in my genes.

The second test they run with the blood is Chromosomal Microarray Analysis.  Attached is a link that describes this: http://www.sciencedaily.com/releases/2007/03/070329092046.htm  This takes a very close look at all the chromosomes and notes even the smallest of issues.  This test did find something in Brycen's chromosomes...an actual duplication of a part of the 16q.  Science is not my best subject so I'm not going to try to explain much of what the lady told me on the phone.  At this point, they checked the database for any link of this chromosome to a disability and found none noted (yet!).  The next step in testing is for Mike and I to have our blood taken and tested to see if one of us also have this duplication.  If one of us does, then the duplication is probably nothing and not related to his Autism or we would also have it.  If we don't have the duplication, then we will go to the next step which might include further testing of Brycen and entering the information into the database to see if any more people show up with the same duplication.  One thing I did want to tell you is that the lady from the clinic did tell me that this area of the chromosome is linked to memory, language, and learning which ironically is where Brycen has so many Autism symptoms. 

I will definitely keep you updated on the findings after we are tested and get results!  It really could be nothing, or it could be the start of something big in determining why Brycen has all of this.  The other thing I wanted to note is that if you, family member, or friend has a child that has been diagnosed with an ASD or other developmental delay, I highly recommend you take the time for genetics testing.  Even if this was done more than a few years ago, this chromosome testing is new and very good at finding the smallest of issues whereas the old testing was very basic so having it done again with the new testing could provide you answers as well.  If this duplication is something to enter in the database, not much can be done research and testing wise on Brycen until others are tested and come forward with the same area of duplication. 

A glimpse of what lies ahead for Brycen in the coming year!

I've had a rough week emotionally. I actually chose to stop reading things about Autism this week and am taking a break from the "in your face" articles and websites that just make me feel sad. While I know we are doing our best for Brycen within our living area and financial means, I don't think I will ever feel like I am doing enough for him!

I took the opportunity this week to talk to his speech therapist at the hospital about increasing his sessions. Currently, he goes to therapy two times per week for 1/2 hour each with Mondays being a co-treat session with OT and Speech, and then Wednesdays is only with speech. I had been reading about children going to hours and hours of therapy a week (and I'm not even talking about the ABA stuff, just OT/Speech/PT and other therapies) and it made me feel the need to re-evaluate where we were with him. He obviously has made some progress over the past few months and with the addition of his communication device, I feel like we need to start pushing forward and testing his ability for more. The speech therapist agreed to extend those two sessions to 45 minutes each and we did discuss possibly adding on a Friday session. She needs to get a doctor's order for the increasing frequency of seeing him (insurance purposes of course!), and is going to discuss having OT do the same and see him two of the days instead of only one each week. Talking to her reminded me that it wasn't just me that was holding him back in session time, but it's his ABILITY to do that. He has a hard time with attention span and staying focused, and while we feel this may be getting better, we know it will always be an issue with him so he will never be the child that can withstand hours of therapy a day. I have read that some people say that their children can withstand this much therapy because it's also play time for them...but Brycen honestly prefers to play alone or in his own way. He likes for us to play certain games with him, but he can be very content to stare out the window at cars or turn his bubble/sensory toy over and over for an hour. Who am I to say that he can't do those things he enjoys and instead be required to do more hours of things he just doesn't always seem happy to do for that timeframe?

In addition to attempting to increase therapy, we are also preparing for his IEP on April 26th. Mike might have to work due to a co-worker being on vacation that week, but I am so confident and happy with this school district that it doesn't even scare me to go at it alone. Pretty much everything that will be discussed that day has already been touched upon during his conferences and other meetings/paperwork over the last 6 months. It is so nice to work with a school that takes education and special needs so seriously!!

My mom, Brycen, and I went to visit the Special Education classroom yesterday afternoon after Brycen returned home from pre-school. While Brycen will be placed in a general education room for the majority of the day in kindergarten, he will also have a Special Education teacher that will pull him out for specifics (and she is also his teacher for Extended School year this summer). After meeting and observing the teacher on Friday, it is obvious that she knows what she is doing and loves what she does! She even has a therapy dog that comes to school every day with her! She explained a basic schedule of his day while in kindergarten and it's split between group time/recess/meals/centers/music/PE with the general education room, and then a few times throughout the day where he is pulled out to work on specifics like their new pilot program, Teach Town, and writing/math. We are pushing for an associate to be with him also throughout the day for many reasons including he is not even close to potty-training and still wearing pull-ups, as well as needing help with transitions, social skills, and other settings that could bring on behavioral issues.

He will continue to have individual sessions with the school's Speech Therapist (though the minutes allowed each month will be decided at his IEP in a couple weeks) and is currently being re-evaluated by the school's Occupational Therapist. As you probably remember, he was evaluated back when he started 3 year old preschool in the old town, but as he is getting older it's becoming apparent that he is behind and needing help in more and more areas. The old school said he didn't have enough issues to warrant them funding OT during the day which is why we seeked out the hospital over there to do some OT sessions. We continued the OT session at the hospital in this new area, and are now just getting around to asking the school to do the re-eval so he can possibly see an OT throughout the month in school too.

While I do believe he is behind in areas that Physical Therapy would work on, I know those are the least of what he needs to work on. I may look into an evaluation through the hospital in the future, but I really just want to concentrate on him being able to complete daily living tasks that require his fine motor skills and of course increase his communication skills as much as possible.

I look forward to what is to come with Brycen over the summer and next school year! I always hope for growth and more understanding of what he needs on a daily basis, but I really just want him to be happy, healthy, and able to have opportunities available to him to learn and adjust. He has an amazing team of people surrounding him!!

Genetics Testing: What we learned today.

We learned so much today! First of all, we learned that when we think Brycen will be at his worst, he tends to usually be at his best. I'm thinking if I just wake up thinking this every day, we should have some perfect days from now on:)
We left bright and early this morning to travel to Cedar Rapids for our appointment with the Genetics Clinic. The Clinic is actually part of U of I, but the doctors travel to multiple locations across the state throughout the month. We initially looked into this back in June of last year and we were put on a waiting list for multiple locations. When we were moved closer to U of I in the fall, I called back to check on our status and report our address and number changes. At that time, they informed me they had an opening for today in Cedar Rapids which is about an hour and 15 minutes from us so of course I took it.
Neither of us really knew what the appointment would consist of though we did know obviously lab work would happen. The nurses and doctors were SO NICE!! We had always been impressed with U of I, but today it was really phenomenal how comfortable we felt. Of course, we reviewed the happenings of the pregnancy, birth, parent and siblings health, developmental level, etc. The doctors were so thorough with their questions and gave us every explanation we asked for. I can't even count how many times they stopped to ask us if we had any questions so far!! A physical exam was completed by both physicians which consisted of measuring various body parts like his ears and how his eyes are set, feeling for any abnormalities on his head and in his legs, arms, hands, and feet. An ultra-violet light was used to go over his skin for any abnormalities that cannot be seen by the naked eye. Then of course there was blood work, which was a little stressful but not too bad! Brycen squirmed, screamed, drooled, cried...as once they poked him, they couldn't find a vein and instead of wanting to poke him again, she just moved the needle around a little until she found one which took a few minutes. Once the blood started flowing, he calmed down and just watched it while still crying a little. He calmed down immediately once we got out of the chair, and wore his bandage with honor!
Results will be available in about a month and that will decide what the next step is. If nothing is found in "Tier 1" as they called it, we could move into "Tier 2." If a chromosome abnormality is found, then it depends on what it is for the next step. They gave us a few examples and said that the testing they do today was not even being done 5 years ago because research has come so far just in that time! We discussed possibility of future EEGs and MRI's, as well as ultrasounds for certain parts of the body for certain genetic conditions depending on the results. Of course, the risk of sedating Brycen for some of these "Tier 2" tests may not be worth it right now, so we will be deciding that when the time comes. The other part to accept is there is a good chance that they will find nothing genetic, and at that point we just ruled things out and will then realize it is an unknown trigger that caused him to regress.
I'll be sure to update you when we get the results and what the plan is. I just really want everybody to know how very brave Brycen was and how he tolerated so much of the exam sitting in the chair on his own. Only once during the entire exam did he attempt to leave the room...otherwise, he just took over the doctor's stethoscope and measuring tape and kept himself occupied with those. We are so proud of him and how strong he was through all of that! Nobody likes to be poked and prodded, undressed and looked completely over...much less a child that has difficult with personal space, touch, and lack of understanding why this is all going on. We love you Brycen!!

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!

Choosing an AAC Device for Brycen

We've had to change our plan with a device for Brycen since I last blogged about it due to the financial aspect of it. With Brycen's services, there is a hierarchy of who will pay for what and in what order. It is billed through our private insurance first, then put through to Medicaid, and then if Medicaid is at it's limit of paying for something, our Waiver services can help out if we have the money available in Brycen's name. It's very confusing so I'm not really going to do into detail on the specifics, but the summary of all of it is the device that we think is best for him right now will hopefully be too low-tech for him in a couple years and Medicaid puts limits on how often they will help pay for a device. We are still unsure if and how much our private ins. will pay because of the run-around I have gotten from them in the 3 calls I have made to them. So, despite my reservations about getting a higher-tech device for Brycen right now as I know how easily frustrated he is, as well as the short attention span he has, we really have no choice at this point. These devices can easily be thousands of dollars...so obviously far out of our personal financial reach so we have to rely on insurance to do what they can and just adapt to what they will pay for and how often.

Therefore, we are no longer getting the Go-Talk 9 that he is currently using in therapy sessions now and has responded so positively to. We had a meeting yesterday with a rep from Talk To Me Technologies and will have another meeting on Monday with a rep from the Dynavox company. They each carry different devices that are very similar, but we want to make sure we are considering all of our options since this obviously is not a simple decision. While I am absolutely ecstatic about taking this next step in helping Brycen with his communication skills, it is also frightening and stressful as I worry about making the wrong decision and I worry also about building too much hope into the device. Don't get me wrong...I know the research supports how much these devices can help in so many areas of the child's life, but being that there is no one right device or one right answer on how to help kids with ASD, I feel like I am reaching for something with a very fragile mindset.

Anyway, I wanted to share a link to the actual device we introduced Brycen to at the meeting yesterday.
http://www.talktometechnologies.com/UserFiles/docs/Alt-Chat_brochure.pdf
I loved it! My experience with devices has been with the basic low tech Go-Talks as well as the older style, big computer like devices over the years. It is amazing what they have recently came out with that you can really tailor to the child's specific needs and day-to-day things. The devices we are currently looking for need to last him at least 5 years, so we want it to be able to grow with him from pictures, to words, and be something he can use to do homework with. So if he is still having issues with verbal skills in a few years, we can sit at the table with him with the device, ask him a homework question, and he can spell out his answer!

Now, I'm sure you are all waiting for me to tell you how Brycen responded to it...and I'm sure the suspense is killing you because it really killed me for the last couple weeks since we set this appt up! It was so unbelieveable that I had to call Mike at work right after the appt, which I NEVER do! I usually just wait to fill him in on updates from Brycen's appts and school stuff when he comes home, but this was far too amazing to not share right away.

Brycen LOVED it! He actually came over and just grabbed it out of her hand when she was showing me things. He set it down on the table, and pushed a couple buttons to see what it would say. This is the same reaction to the Go-Talk that he had...like he needed to just feel it out first and see what it does by pushing all of the buttons. What I think really surprised him is when he would push a category button, a bunch more pictures magically appeared and he looked up with a smile like "this is pretty cool." Without any prompts or pointing to show him, he pushed on the "toys" button on his own, found a picture of a "ball" on the next screen, pushed it and heard "I want to play ball." He then smiled and went over to the ball to play with the SLP. He came back over a little while later while we were talking, grabbed the device again, found the toy button on his own again, and then pushed the "swing" button and the device said "I want to swing." So then he went over to the swing and did that for a little bit! Not only did he seem to be curious about the device, he figured out those steps without us even showing him just by looking at the pictures and trying it out! He also followed through with the choice he made which is something we have been working on with him.

Now the big news is we decided to try out the "I'm hungry" button and we programmed in two different snacks we had available for him to choose from. He did the same thing as before just by us pointing to the "i'm hungry" button first. After a few minutes of snack, he went back to the mainscreen on his own, found the toys again and communicated through the buttons that he wanted to swing again. Then after swinging, he came back, found the "I'm hungry" on his own and went to the snacks again.

I know this probably doesn't give you the best picture of how it all played out...but take it from me, that I was absolutely amazed at how interested he was in the machine and how he pretty much taught himself those two things! I, of course, had tears in my eyes! If we can accomplish all of that in one hour, imagine what the possibilities are once he has a machine to use every single day!

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.

The choice to look for more answers

One year ago, we were devastated and attempting to accept the Autistic Disorder diagnosis that was given to Brycen. Today, we are finding things to be so much easier to accept and time has given us the chance to research and learn more about Autism and how it affects our family.

A meeting for work this morning gave me the chance to meet a very knowledgeable staff that pointed me in the direction of Fragile X syndrome. This is an inherited disorder that affects children in many ways similar to Autism and a good chunk of children may actually be diagnosed with Autism before doctors realize it is actually Fragile X. "Fragile X is the most common cause of Autism and Autistic-like behaviors." Fragile X is the only area on the spectrum that has a known cause and is genetic. Mike and I discussed getting Brycen tested for this as soon as possible as it would help us narrow down where he falls on the spectrum. If the test is negative, then at least we have ruled it out...but if the test is positive, then we know where we need to focus, the reason for the autism, and since it is genetic, it gives our family a chance to find out if they are carriers, as well as Aubree.

The testing is very simple and I have made a call to U of I to determine if we need to go there for it or if we can go back to CHSC in Fort Dodge to have the DNA testing done. I have attached a link to the National Fragile X Foundation page so you can read for yourself about Fragile X. It is actually very interesting! We'll keep you updated on what we find out!

http://www.fragilex.org/html/what.htm

The Verdict is in...Speech Therapy

After a quick evaluation and observation this morning, the SLP at the Spencer hospital has recommended 2-3 times per week of speech therapy with 1/2 hr per session due to Brycen's limited attention span. She did emphasize that she preferred 3 times per week, but no less than 2 times per week. While I did not receive any info on where they feel his communication development is right now (prob because that is hard to do off of an hour evaluation), I did receive info on their plans for working with him, which I have never, ever received from the school's SLP. The plan is to use a social schedule and work in various areas for 5-10 minutes at a time to build up attention span. They are also going to duplicate the schedule for us at home so we can all be consistent which is something I have wanted for the entire school year. She is going to work on functional communication, more sign language, obviously more spoken words, and also work on identifying emotions due to his aggressive behaviors. The hope is that he can identify and communicate to us through a picture if he is feeling angry so we can be proactive before the aggression starts. Same with feeling happy of course!
I decided that their thoughts and actions are more aligned with what Mike and I want for him, therefore I am not hesitating to pull him from school over the next week and half to take him to therapy. Since he spent an hour with her today and seemed to respond so well to being around her, I do not want a gap in between today and the time he sees her next, so we are already scheduled for Monday, Wednesday, and Friday next week. He will actually be seeing a different SLP in same office on the Friday as I would like him to have a little variety and not get too attached to one person.
Though I know that driving three times a week there and back, 75 miles round trip and 2-2 1/2 hours of our time, will take a toll on our finances and available time for work (though I still have hope that Medicaid will help with the mileage), our child is far more important! If he was diagnosed with cancer and they were recommending chemo or another therapy three times a week that would help save his life, I would never hesitate to do that...so why would I hesitate to do this?! Same concept to me. Communication is something we all need to succeed in this world, so we are willing to do all that is in our means to help him along. And since we have finally found some people that seem to feel the same way and have knowledge of what he needs and are willing to address it...another reason to not turn down this opportunity!

Outcome of Iowa City evaluation

Mike, Brycen and I visited the Child Psychiatry department at U of I Children's Hospital yesterday for a full evaluation by specialists that work with Autism. Brycen had individual evaluations completed by a speech clinician, resident physician, educational consultant, and psychologist with the overview completed by a Staff Child Psychiatrist. The diagnosis from the compilations of all of these evaluations was "Autistic Disorder with a likelihood of mental retardation." This was no surprise to us as he has already had the informal diagnosis of Autistic Disorder from Child Health Speciality Clinics in Fort Dodge. The "likelihood of mental retardation" stems from the fact they cannot given an accurate IQ test to a 3 yr old, but what they did determine is that his cognitive skills/development are behind those of the "typical" 3 yr old which then is "labeled" as MR. To us, this is just a label that will be re-evaluated in 2 years to get a more accurate diagnosis with his cognitive development. There was no question that his developmental skills are delayed, and he meets the criteria for "Autistic Disorder."
The combination of these two diagnosis will qualify him for the Intellectual Disabilities Waiver (formerly known as the Mental Retardation Waiver) which will provide Medicaid insurance for 1:1 therapy and further evaluations and appointments. He/we may also qualify for respite services as well as some other services that are available under the ID Waiver. The most important part is the Medicaid Insurance as our private insurance does not cover the majority of these services and will provide financial relief to us in the future for what he needs.
A written report will be provided within the next two weeks to us, his primary physician, AEA, and the school district with recommendations on the treatment plan specific to his needs. The U of I team has compared Brycen's communication skills to those of a 12-14 month old, which is comparable to where AEA rated him a few months ago. Though his fine and gross motor skills are similar to that of a 2 1/2 year old (how many 3 year olds can hit a ball pitched to them)!
If there is any other information in the written report that I feel is important for everybody to know, I will make sure to post it at the time we receive it. Otherwise, we don't feel medications can help with any of the symptoms he is showing at this time, as they rarely give medications to 3 year olds anyway. We were given permission to double the dose of Melatonin we were giving him each night so hopefully we will see a better sleep pattern from the higher dose. He will be starting 1:1 sessions with Kelsi (a student at BV) this week on Tues and Thurs from 3-4pm to help out with his communication skills and other pre-school skills. We are looking at requesting a change to his IEP to increase his 1:1 speech therapy from the school district after we receive the recommendations in the written report. Before looking into any additional therapy outside of school and Kelsi, we are going to wait and see how he progresses with these and re-assess in a couple months.
Brycen was a real trooper yesterday during all of these evaluations and meetings we had with the specialists! He adjusted well to the different people and obvious changes in his routine and not only showed us his strengths, but also the areas he needs help. He gave the specialists a clear picture of who he is on a daily basis, which helped them to give an accurate diagnosis, and he was able to "play" while doing so! Though I think he would have preferred to be at school!
He adjusted back to his new routine this morning of getting ready and going to school with no problems. He is our precious little boy that deserves all the love and help that we can give him! Thank you to everybody that has supported us this far and will continue to as we keep on our path to success with him!

A Turning Point?

This week started with Brycen's last speech therapy appointment at home and will end with the start of pre-school on Friday! The speech therapy went fantastic this morning and was one of his best sessions ever...we hope his first day at school on Friday will go just as well!

Here's a rundown of his great accomplishments during his therapy session today:
-He became excited when he looked out the door and saw the therapist and the Early Childhood Coordinator arriving (he used to ignore, hit, yell etc at them)
-He sat down at his kid's table willingly and looked through a book about colors with very minimal resistance.
-When we asked him to point to the kitty-cat in the book, he matter of factly said "I did!" (the only phrase he spontaneously says), even though he didn't...he received tons of praise anyway!
-He waited patiently for next toy to come out with physical prompting to put his hands in lap
-He spontaneously said "choo choo" when he saw the puzzle piece of the train
-He would sign "please" with a verbal imitation of the word also spontaneously (after a minute or so of waiting for him)
-He took turns with the bubbles outside...also spontaneously signed "please" and "more"
-He transitioned from activity to activity with NO resistance!!! (This is huge as just a couple of months ago, he would not allow this if he was enjoying an activity too much).
-These are the words he imitated (considered word approximations as he does not say all the sounds, but we can decipher it still) multiple times throughout 1 hour session: boat, car, help, cracker, more & bubbles
-Waved and said "bye" to them when they left with verbal prompt from me

When comparing these to the first few sessions back in the winter, huge steps have been made! We went multiple months with very little or no progress and Mike & I really weren't sure what to do...but it seems like we have reached a turning point! We have high hopes that going to school will encourage the social interaction and following directions...and we are encouraged by the 1:1 speech therapy! Unfortunately he will not be receiving this from the school district at home anymore, so we are looking into other possibilities that our health insurance may cover. According to BCBS, the doctors will need to recommend the 1:1 speech in order for them to cover it, and they also limit the number of sessions covered which may not be as much as Brycen needs. I try not to dwell on the financial aspect of all of this and just focus on what he needs and what is available to us right now...but my recent conversations with DHS and Social Security regarding Medicaid insurance has not been very encouraging.
Although Brycen's speech, nonverbal communication, and social skills are still far behind the average 3 year old, the MOST important thing is he has made progress! And we have no doubt that this progress is going to be even better once school starts!

Where are we now?

I want to apologize now for what will probably be very lengthy posts...I love to write and I think this is going to turn into a great therapy for myself on those days that are very trying!

It is June 24, 2009 and Brycen will turn 3 years old in exactly 1 month. He has a handful of single words, 2 signs, and a couple 2 word phrases...and of course babbling that we try to decipher every day. About a month ago, AEA rated him at a 16 month old level...do the calculations...that is less than half of his actual age! His "odd" behaviors are pretty much a normal part of the day now...opening and closing all the drawers in the kitchen that are not yet child proofed, shuffling/wrestling his toys around, laying on the floor pushing his tractors/trucks back and forth, throwing toys, jumping up and down while flapping his hands, grunting when he wants something, playing with his hair continuously, and so many more. His aggressive behaviors are getting worse each week...spitting and blowing bubbles when he is unhappy or mad that he isn't getting what he wants, hitting us or his sister, throwing temper tantrums on the floor and throwing/breaking toys.
Last Wednesday, I took Brycen to Child Health Speciality Clinics in Fort Dodge for his initial evaluation. We came home with a most likely confirmation that Autism is the correct diagnosis and of course more questionnaires and profiles to fill out for the Iowa City specialist. I met with his educational team on Thursday for his IEP for school in the fall. Though the services they provide won't change with a medical diagnosis, they are putting him in the Mild-Moderate Autism category from the profiles we filled out for them and the observations they have made over the months. Yesterday, I received a call from U of I hospitals to set up his final evaluation/observing of him. They can't fit him in until Monday, August 31 which is 9 weeks away...though we know getting into a specialist can sometimes take months, so 9 weeks is probably very good. He will be seeing an entire team that includes a physician, speech pathologist, psychologist, and some others for about 5 hours that day. This team will determine the actual medical diagnosis (Autism is a very large category in Developmental disorders, so they need to determine what criteria he meets under Autism Spectrum Disorders for the exact diagnosis) and help with devising a treatment plan that works best for his needs and personality. Through this phone call, I also learned that part of the appointment is considered educational and our insurance company most likely won't cover the cost of that portion...$520! I have yet to call the health insurance company about coverage for the rest of the appt, but I did notice on our benefits page that Autism disorders are covered under the Mental Health section, so the medical part of the appt should be covered...though I will still call them to confirm this for my own piece of mind.
Of course Brycen's health comes first, so we will pay anything and do anything we need to to ensure he is receiving the best treatment for him! We learn more and more each day about the sacrifices parents make for their children...and we also learn that it is all worth it!