Autism Family Night

This is a free event for families dealing with autism on January 28th at Discovery Gateway. It will be a fun way to connect with other families and researchers in the Utah autism community.

Also, if your child has autism and/or developmental delays but is undiagnosed, the kind folks at Lineagen (like my amazing friend Karen!) will be there to answer your questions.  :)

Last Day at Pingree

Bertrand fell asleep so he wouldn't have to say goodbye to his wonderful teacher and aides.

Today was Bertrand's last day at the Carmen B. Pingree Center for Children with Autism. We are going to miss Pingree so much! The staff, facilities, and kids there are fantastic. In the future, we'll be stopping by for old times' sake, conferences and different events.

Mama let Bertrand eat a few bites of his "farewell" cupcake at the class party.

We found the perfect thank you card for Bertrand's teachers there:

"Some people only know one way of giving - with both hands, with all their hearts, without a second thought. Thank you for being those people."

These were the first people I felt safe sending my most precious baby to.

Any child in their care is fortunate to be with them.

Bertrand's classmates made him a thoughtful farewell card.

We'll miss you too, Room 1137!

Thank you for everything!

The Path to Assistive Technology

The Judy Ann Buffmire Rehabilitation Service Center

Bertrand's speech therapist through the Pingree Center for Autism set up a meeting at the Utah Center for Assistive Technology (UCAT) with a technology specialist there, his wonderful teacher from Pingree and his new speech therapist from his new special ed preschool. This meeting helped us lay the ground work for his assistive technology evaluation with the regional Utah Augmentative Alternative Assistive Communication and Technology (UAAACT) Team. UAAACT is a project of the Utah State Office of Education and the Utah State Office of Rehabilitation / Utah Center for Assistive Technology dedicated to improving the communication skills of students with disabilities across the state of Utah.

Matthew and I went into the meeting looking to get ideas on how to make the most out of Bertrand's iPad. We expected to get the names of appropriate apps and test drive them--which we did. But, some of the most useful information from the meeting came in the form of brain storming ways to gauge the effects of Bertrand's motor issues/movement disorder versus the effects of his cognitive abilities. And, how to capitalize on some of Bertrand's motor strengths such as spinning objects with his hands and his ability to stare pointedly at items. Bottomline, before even delving into the iPad, there are a lot of old school analog techniques which are very concrete that may set Bertrand up for immediate success.

For example, using actual objects to choose from, as opposed to using drawings or even photos of the objects in an iPad app, would be a great way to start systemetizing his communication. We do this already when having him choose between books or toys but, as one of the speech therapists pointed out, an even better test is the choice between a bottle/food and something uninteresting, like a gardening glove. This way we know the choice is actually his and not ours.

So both Daddy and Mama came away with homework from this meeting. (Daddy can have fun writing up his plans in an independent post when he isn't so swamped with work.) I am going to start off with buying a bunch of plain-colored, plastic placemats and putting a line of electrical tape down the center of each. Bertrand's will have one of these new "choosing mats" for his wheelchair, highchair, both schools, and one on every floor of our house. We'll start using the mats to present tests, choices, dichotomies... first using objects and then maybe photos, and get to know what Bertrand thinks. Give him a voice--some power. That alone could make for a much happier young man!

Movin' On Up!

Bertrand's time "actively engaged" has been steadily increasing!

Bertrand's goal review was today at the Carmen B. Pingree Center for Children with Autism.

On February 2, 2010, a care plan meeting was scheduled with Bertrand's parents. At that meeting, they identified the following goals for their son: "According to the parents, Bertrand will develop more communication. He will tolerate changes in the environment. He will improve his social awareness, including eye contact." The parents and team members reviewed this goal in August 2010 and determined it was still appropriate for Bertrand. While Bertrand has faced many medically related difficulties in reaching his goal, he still has shown progress. He is able to remain regulated in the classroom for longer periods of time. He is showing improvement in his ability to use eye gaze to communicate with others. He shows more enjoyment in the classroom through increased eye contact, laughter and smiling. His parents note that he is doing many of the same things both at home and in other environments. This progress cannot always be captured through developmental assessments. However, developmental assessments have been completed with Bertrand using the Early Learning Accomplishment Profile (ELAP). The results from his assessment are provided below:

	ELAP (3/15/10)	ELAP (new)
Gross Motor	5 months	6 months
Fine Motor	1 month	3 months
Cognition	less than 1 month	3 months
Language	1 month	5 months
Self-Help	unscorable	6 months
Personal/Social	3 months	6 months

This is only the first section of the goal review, but you get the idea. Bertrand has recovered a lot of from his developmental regression in 2009 and early 2010. He is creeping back into the 6 month range developmentally and is happier overall--which is the most important thing. :)

A Big Change

Bertrand's expression upon hearing "it's a girl". Priceless. :)

Last week was eventful! My father came to visit us and was a keynote speaker at the Spectrum Academy's Autism Conference. Bertrand had his IEP evaluation and qualification meeting. (Everyone from the Salt Lake school district was great and, not surprisingly, Bertrand qualified.) Lastly, we learned that Bertrand will be a big brother to a SISTER due April 8th! Bertrand was a bit unimpressed by the ultrasound (see picture below) as his sister came no where close to resembling his favorite red monster, but mom and dad couldn't be happier. :)

Bertrand laughs... the sequel.

Today I sat in on Bertrand's class at his "preschool", the Carmen B. Pingree Center for Children with Autism. I left with such a full heart because the staff there treats Bertrand (and all their kids) with so much love and respect! As a result, they can and do work miracles. The video above showcases the simple joy of playing with a rainstick which we learned there today!

In class, B touched the pages of a book on his own initiative and throughout the day he laughed more times than I could count! I am so proud of my little man! It seems that he is finally turning the corner with his broken arm. Also, with the ketogenic diet ratio change 3 weeks ago and the addition of branched chain amino acids, is it possible that we're finally seeing the results?

Super Dad

As you can probably tell from our blog inactivity, the last few weeks have been unusually challenging for Bertrand (and me) due to his broken arm. Today was even tougher than usual, but fortunately for us, we had Super Dad on hand. Matthew really put his Family Medical Leave to work today! He started the day off by preparing Bertrand's keto meals ALL BY HIMSELF and then attending a 3-hour mandatory parent training session at the Carmen B. Pingree Center for Children with Autism (Bertrand's preschool)--during which he took notes. Then Matthew dealt with home repair issues--including buying a new water softener since the old one flooded our basement. After that we headed up to Primary Children's Medical Center (PCMC) where we all met with Bertrand's keto team. And Matthew topped the day off perfectly by "cooking dinner"! (Read: "bought McDonalds". Hey! It still counts!)

Anywho, Bertrand is capable of having at most 3 "seizure free" days in a row at a 3.5:1 ketogenic ratio. This is a fantastic improvement, but we'd like to see him completely seizure free if possible. If the labs which were ordered today look good, then we can go forward with a 4:1 ratio for the next month and see how his EEG looks on March 26th. From there we will know if we have to stop the diet temporarily to try the so-called "beast killer", ACTH. (You may remember hearing about ACTH earlier on our blog as the treatment for Allgrove Syndrome.) However, resorting to ACTH, or even a lesser steroid like prednisone, has been compromised by Bertrand's recent arm break. Steroids weaken bones, (one of our neuro's patients on just prednisone fractured 4 vertabrae) which is not good when bones are already weak. We'll be consulting with B's orthopaedic surgeon regarding the steroid option.

Bottom line: lab tests and blood draws will continue to be an important part of Bertrand's life for a long time to come. So, at the lab this afternoon, Bertrand needed 25 mL of blood drawn and after 4 pokes he had ZERO mL of blood to show for it. We have to return tomorrow afternoon and hope the poor little guy has better luck. Labs that are being drawn include: SCN1A (gene test, results in 6-8 weeks), Iron, (due to restless leg), Vitamin D, Selenium (both due to the ketogenic diet) and Bertrand's usual comprehensive metabolic panel.

Bertrand is going to school!

Bertrand had his evaluation at the Carmen B. Pingree Center for Children with Autism today. Dr. Peterson, their psychiatrist, confirmed that Bertrand has some autistic behavior. This led to an interesting discussion about the role CBP could play in Bertrand's development. Bertrand is not a typical toddler or even typical developmentally delayed toddler. In fact, Bertrand has much more in common with a newborn. He needs to attain more basic skills such as trunk control and fine motor development before the established CBP pre-k program could fully benefit Bertrand. "Our staff would feel too guilty to take your money." (You don't hear that often in this day and age!) But, while we were receiving this news from Dr. Peterson, Bertrand was busy working his magic on the staff of CBP. His unruly mop of curls, piercing gaze, cherub cheeks, and love of reading proved too much for them to resist. While their traditional ABA program wasn't a fit for Bertrand, the staff could see a lot of potential in him and felt that if they could work with Bertrand's current physical, occupational and speech therapists, a difference for Bertrand could be made. They put their heads together to come up with a radical departure from their current program, custom tailored to Bertrand. His will be the very first one day per week program and the focus will be on communication, sensory integration and, of course, socialization. At the end of each semester, Bertrand's goals and progress will be evaluated to see how his program needs to be adjusted.

Today was a triumphant day. :)

A Good Day

Flu Shot
Done! Bertrand's requirements for hospitalization in November are now fulfilled! But, the poor nurse vaccinating Bertrand experienced my special-needs-mommy-warped sense of humor.

• nurse: "Due to the seasonal flu vaccine shortage, we only have vaccines with Thimerosal available. Is that alright?"
• me: "That's the mercury, right?"
• nurse: "Yes."
• me: "Hahaha! He already has autism and seizures. Mercury is the *least* of his worries. Go to town."

Allgrove Syndrome
Pending. They said to try back in another week. The test is supposed to take from 6-8 weeks, and is very rare, so I guess we'll get results back closer to 8 weeks. At least from a customer service perspective, GeneDx is the best genetic testing lab I've dealt with. In the future, if we ever have to do prenatal testing, I want it done through them.

Epilepsy Conference
Attending! November 14th the Epilepsy Association of Utah Presents: Educational Conference 2009. Admission is free. It will be at East High School (840 South 1300 East, Salt Lake City, UT 84102) from 9 am - 1 pm. Registration begins at 8:00 am.

Topics will include:

• Basics of Epilepsy
• How to participate in the IEP team
• Women and Epilepsy
• Handling caregivers stress - Q & A Session
• Dravet and Febrile Research - New answers
• Disability Laws how do they affect me?
• And Much More

Autism Conference
Attending! November 18th and 19th the Carmen B. Pingree Center Presents: Parent Conference Fall 2009. Cost is $25 an individual or $30 per couple. It will be at the Carmen B. Pingree Center (780 South Guardsman Way, Salt Lake City, UT 84108) from 8:30 am - 3 pm. Registration begins at 8:00 am.

Matthew has to teach on November 19th (the only day I want to attend if Bertrand is out of the hospital), so my fabulous friend Lynn offered to babysit so I could attend! Thanks, Lynn!

Sessions I will attend include:

• SpecialCare: Budgeting for everyday needs, as well as, long term financial security.
  
• Understanding Individual Education Plans (IEPs): How and why schools use them and how to obtain one for your child.
  
• Information and advice on enrolling your child in special education services with the Salt Lake City School District.
  

Speech Therapy
Successful! At 45 minutes this was Bertrand's longest session ever! Bertrand can usually only make 20-30 minutes before his frustration becomes insurmountable. Today he displayed his ever-increasing attention span and his improved motor control. I am so proud of my son!

Home Refinance
Done! I still don't quite believe it, but we finally signed our refinance papers today. It only took 10 months, 6 loan officers, countless phone calls and emails, not to mention a few tears of anger/frustration on my part. But, it's done! All of that effort was worth the $400-500 extra we'll save each month! It'll all happily go to KetoCal. :) It still amazes me that we own a home with a yard for so little more than what we paid for our tiny apartment with a gravel patch in Atlanta.

Today has been a good day. :)

24-Hour EEG Results

Oh yeah, I forgot to mention that Bertrand's 24-hour EEG was read yesterday by four neurologists, including Dr. Colin Van Orman, an epileptologist. Bertrand's EEG was highly abnormal. There was lots of noise, focal seizures and generalized seizures. Bottom line: they all agreed with the April 2009 Duke University finding of multi-focal epilepsy.

Let me take a moment here to explain something that until a few months ago was not clear even to me. Conditions like epilepsy and autism, both of which Bertrand has, are really symptoms, not stand alone diagnoses. Like a runny nose can be caused by viruses, bacterias, allergies, genetics, etc., so too can epilepsy have a variety of root causes. The same goes with autism. In Bertrand's case the root cause of both is believed to be an undiagnosed genetic disorder.

Carmen B. Pingree Center for Children with Autism

The Carmen B. Pingree Center is less than a mile away from our house!

A few days ago at dinner with my father and Dr. Janet Lainhart I learned about a resource for autistic children in the state of Utah: the Carmen B. Pingree Center for Children with Autism. Janet is the Medical Director for the University of Utah Autism Clinic and works closely with the Pingree Center. She believes that Bertrand would benefit from their preschool. Fortunately, the preschool program is funded publicly through the State Division of Mental Health.

Unfortunately, the The Elementary/Secondary Program is a private pay organization. Families are assessed fees based on IRS tax information. The fees are augmented by an endowment fund where interest from the endowment is used as a tuition stipend based on the families ability to pay. Tuition for one year is $28,500. That's a bridge we'll cross when we get to it.

I am still wrapping my head around the possibility that Bertrand may be alive to go to a preschool! And it is one with a 2:1 student to teacher ratio with the resources to cope with him if he stays nonverbal and nonambulatory! This is a very good thing.

There is a waiting list for the school. The entire school has only 70 spots (50 of which are for the preschool). Bertrand is getting on the list first thing tomorrow!

Autism Comes Home

It would be accurate, if highly misleading, to say that I grew up with autism. I spent my childhood working and playing in my father's lab--my father being a neuropathologist who researches the condition. I also met a great many autistic individuals through both my father and my time at Georgia Tech.

This all said, while I realized that Bertrand exhibits autistic behavior, I did not consider him autistic. A week with my dad changed that and stripped away my last hope for normalcy. Even if no genetic condition (such as Rett syndrome) is identified, Bertrand is still autistic and pretty severely at that.

New Speech Therapist

Kirsten called today for two reasons: (1) to see how Bertrand was doing with the taping therapy [still fussy] and (2) to see if it was alright with me to get the ball rolling on a new speech therapist.

Bertrand's speech therapy classes ended last year and new classes will start in the spring. From a social interaction standpoint, I like the classes. However, due to being the youngest child and his developmental delays, I am not sure the class setting is such a good idea. I don't want Bertrand to get overly frustrated or distract the other kids. A class for younger babies would probably suit him better--two year olds are just too advanced.

At the very least I want someone working with Bertrand one-on-one at his speed. Kirsten started on the paperwork, so hopefully in February we'll start seeing a speech therapist at home through DDI Vantage (the childhood early intervention agency for our county).

Kirsten wants Bertrand to start speech therapy because of a recent training she attended on autism. Bertrand shows many signs of autism in his sensitivity, focus and social response. She believes that, even if he is not ever diagnosed with autism, early intervention is key.