An Inflection and a Touch of Back-to-School Stress

Posted on August 19, 2014 by kenlininger

Not to diminish the anxiety involved in two kids starting pre-school and one starting first grade, but seriously, it just isn’t that big of a deal for me. Our [neuro-typical] kids are looking forward to going, and this exhausted daddy is too! But, there is some stress related to managing the back-to-school routine. All the stuff to buy. The return of the pain-in-the ass lunch food rules and schedules (is there a hashtag for that?). Lists of rules, that boil down to a rule for every exception (and every exception to the exception) known to mankind regarding public education, when the reverse policy works just fine. Who has to be where and when? I could go on-and-on… but, I really don’t care all that much after all we have been through – I am not stressing (though I may complain from time to time).

Then there is Savanna, (who doesn’t like peanut butter anyway…)

The date is set. The moment has arrived. Not exactly the same acute drama as brain surgery, but definitely high-running emotions about what may result from ABA therapy. Savanna starts September 1. This therapy is widely considered the best intervention for ASD related behaviors.

It is not scientifically proven to ‘work’ (meaning cure) but evidence shows children who go through this type of intervention have the best outcomes.

This means everything is changing. Schedules, therapists, daily routines. Much like for any family with school-age children.

Savanna will also receive OT and ST at their facility, which means discontinuing her current regimen. It means adjustment to entire new set of therapists.

Early Childhood Intervention (ECI) will end on her birthday in September, but her attendance schedule at ABA, effectively ends it day 1 of ABA.

Also discontinuing is vision (VI) and orientation & movement (O&M) through the public school system since Savanna will not enroll in PPCD (Preschool Programs for Children with Disabilities).

I hear quietly from people in the know, this label (qualifying for PPCD) is like jumping into a pit of quicksand. It is so easy, and honestly, the only option for most. Just do the eval, and then boom! You are enrolled! Except, what is not explained is the process to ‘get out’, or remove the labels segregating her from the mainstream crowd. I see mainstream education as an option for Savanna. I want her to have the opportunity to attend Kinder at her normal time if during the next three years she proves she is ready. If not, then we go another route. Is it just a dream at this moment? Maybe so. But, I am not yet ready to relinquish my dreams for that the epilepsy has most likely stolen. Perhaps over time, my dreams will evolve.

I have been closely involved with her care for more than two years now as a stay at home dad. I have interacted in detail with all the specialists and therapists. I know the insurance nuances well. I am the judge, jury, and executioner when it comes to dealing with her behavior and actions. I am also her safe place most of the time. I am keenly aware of when it is time to just hold her and when it is time to push her away and press the issue. Her current team is in tune with her as well in a similar manner. The new therapists and caregivers are not aware of her subtle signs, and so a new chapter begins.

Suddenly, for about 35 hours a week, I will not care for her directly. Everything is changing.

She is still on the waiting list for the facility closes to us, and close the pre-school (yeah that was planned…) I don’t anticipate enrollment until 2015. Houston traffic sucks BIG time. It is a 2-3 hour driving experience everyday. I should not complain about this, but I am, sorry.

While we enter this season of everything changing, we have also noted changes in everything regarding Savanna’s abilities.

As we have weaned down her [single] medication to half the dose she was taking, we have seen a marked increase in memory, visual acuity, and coordination. Is it medication related? Who knows. It could be her natural developmental progression. I find little scholarly information available about effects in 2-year children on this medication. To me, she seems dramatically quicker to react and respond to me, her siblings, her therapists, and the entire world around her. It has been quite an awakening.

She is using utensils now to eat regularly. She has really taken pride in being able to either stick something with a fork, or place food on a fork/spoon and then eat it. Sometimes she uses the back of her hand to model the utensil. I have caught a few of these moments in stills and very short video clip. Note the response at the end of the video – very appropriate.

Recently, I video taped another OT session with Nikki. Here is a great clip of her with a shape sorter. She finally did it! During the activity she was very engaged. She manipulated the sorter to find the right hole for the shape. We have worked on this activity for nearly a year. I am so happy to see what she accomplished, but at the same time, typical kids learn this in a far shorter amount of time. What should I extrapolate from this reality with regard to her development pace or ultimate outcome? I know some of you are thinking, (Just be happy with who she is today!) Everyone wants the best, the most, for their kids. Savanna is no different from that regard. I dream big for Savanna. But this accomplishment, while a great achievement on its own, is easily interpreted with an ominous uncertainty on my part.

Another example. Coloring. We have worked with Savanna on coloring (scribbling of any type, on anything, with any type of marking device), and only in the last few months has she started to “get it”. She sees her siblings coloring, and wants to participate, but just cannot for reasons related to cognition, visual motor integration, and coordination.

I have never worked with Austin (her twin) on coloring. Again, he sees his siblings coloring, and wants to try. At 2 years old (albeit almost 3), he decided he wanted to color something recently. I instructed him this way (more or less) “The crayons and markers are on the table. Get a coloring book, tear out a page and go to town.” Yes, his 4-year-old brother was there too, but he was engrossed in his own masterpiece. I did not help him at all during this time as I regularly have enough to manage. If he is being quiet and in sight at the table coloring, what can go wrong? (Yeah… that is another blog post altogether!) Savanna colored something in a highly supervised and prompted environment with a therapist. Here is a picture of the two results.

Some would say it is not fair to compare her to a normal kid. Really? This is what happens everyday. Not just by me, but by most who interact with her. What is up, and what is down? Does she need this or that, or not need this or that anymore? I am not trying to over-analyze the situation – don’t take me the wrong way. Simply dismissing my observations and analysis does not equate to an irrelevant or non-existent situation.

Make no mistake: Savanna is excelling. She surpassed my expectations and those of many professionals who met her before she was a year old. It is time for me to change my goals, not just for Savanna, but for me as well.

I look at this final picture and I see a metaphor flash before me of our last [almost] three years with Savanna. As I watch her climb to the top of the slide, I see our life challenged with fear, heartbreak, mourning, anger, rebirth, remaking, extraordinarily complex parenting work, and now, maybe we reached a point of inflection in our lives; she in hers. To ABA we go!

-dad

Dare to Dream

Posted on August 7, 2014 by kenlininger

1 year, 4 months and 7 days since the completion of Savanna’s TPO resection for seizure control.

Savanna recently had an MRI to examine the surgical site in her brain and a 23 hour VEEG to observe and characterize events and behaviors for a 12-month post-surgical follow-up meeting with her neurologist.

Happy! Happy!! Happy!!!

The MRI impression is that the surgical site appears unchanged from the imaging results at 6 months post-op. No signs of problems related to the surgery or anything additional elsewhere in her brain. The EEG revealed that concerning behaviors were not related to epileptic activity.

Just playing around during my EEG.

Yeah, I have done this before…

MRI day. Not a happy camper.

This means she is what we call seizure free (SF in the internet world). In the medical community, Savanna’s outcome is still Class 1a on the Engel scale. This is as good as it gets in terms of seizure control. Awesome!

The Shape Sorter. Again. Again. And, again.

The Shape Sorter. A must for a toddler during a 23 hour EEG.

Well, what does this mean in her everyday life?

It means the power of prayer is real. I believe God works through us all. While He allowed Savanna’s suffering, He answered collective prayer through actions of her doctors inspired to empower their God-given intelligence and ability.

It means we are witnessing development which we might not have otherwise.

I moved the stool myself, and turned on the light!

It means we are witnessing His divine power as Savanna climbs out of the valley of global sensory reintegration created from forced normalization of her brain activity and subsequent reorganization of the neural network. Savanna thankfully exhibits a persistence and perseverance that you cannot teach. At times, she wants to learn; she wants to show us things; she wants to exist in our world. This is when the camera comes out, because we knew it was in there and we are so happy to see it come out. And then at other times, it is just difficult. She disconnects, and seems to wonder aimlessly through her own world on a path I just cannot see or understand.

For the first time…

For the first time, she is eating and drinking on her own in a manner that is adequate to allow her to thrive. Six weeks ago we removed the feeding tube. Savanna is now 100% orally fed. She is able to try food in larger quantities and react to the textures, smells, and tastes. For the first time, I have been able to really hone in on how her diet affects her mood and behavior.

For the first time, we are observing fine and gross motor skills that are close to the low-end of normal. If you were to see her on a playground, you would not immediately see a difference between her and other children her age. But, it is there, lurking just beneath the surface of awareness for not only the casual observer, but also for her. It is significant, and it is serious. Sometimes these complex deficits rear their ugly head with an unusually awkward fall, or sudden, invisible playtime-ending problem. In general, I am highly in-tune with Savanna and plan accordingly. But recently, for the first time, she is often perceived equal in ability to her twin brother.

For the first time, we are witnessing dramatic acceleration in her receptive communication. (This is where she understands simple instructions or auditory communication.) Her cognition is improving daily, which allows learning new sign language at a quicker pace. At this point, the communication is her biggest barrier to a happy life (for us too!).

For the first time, we are seeing times of appropriate social interaction with her siblings. She exhibits persistence worthy of saying she is ambitious in catching up developmentally. She has moments of appropriate empathetic reactions to others. At times she is even deliberately mischievous, just like a normal 2 year-old! I see her interacting with her twin brother like I have not in the past. They sneak out together after breakfast to get on the trampoline, or play crazy games of laughing out loud and running from wall to wall in the house. It is so awesome to see knowing what I know, and something I was beginning not to expect at all.

A short video clip of Austin and Savanna on the trampoline… Austin can open the door, so they conspired, snuck out unseen. Savanna’s compulsion with closing doors meant, I didn’t immediately notice they had left! Then, I saw them. I saw playing. I heard laughter. I felt the need to start the camera.

We recently went on our summer pilgrimage to the homeland (KY and VA). This has normally been quite a trip for us, slathered with worry (from me anyway) and hampered with impediments related to Savanna’s condition.

For the first time, I did not pack a suitcase full of DME (durable medical equipment), or supplies related to tube feeding. I did not pack a duffel bag full of medication, most for “What if?” scenarios.

Extra Goldfish, Pringles, and apple juice replaced cases of enteral formula (not exactly a nutritional even trade, but I will take it!) I did not pack back-up stuff for back-up stuff. I took 2 oral syringes, a bottle of prescribed medication, and some rescue medication for good measure. For the first time, I did not install the roof box to carry all the extra stuff. It actually seemed kind of easy and normal travelling on an insanely long 3400 mile road trip.

Savanna had many great periods and days on the above mentioned “vacation”. She did have a few bad days too. While most want to see her as ‘normal’, this is something I just would never mention about our other kids knowing what I know now. No, she didn’t seize, but once we lose the happy place, it sometimes is difficult to get it back in the same day. On those days, all the best laid plans start to boil down to “Who is going to hold Savanna?” I know it sounds simple, callus even to the reader/parent who might think it is not a big deal – holding a child. And to those readers, you are right – I am whining. But, I think the analysis and commentary are relative.

Rebecca and I are both still somehow in ok shape after this journey. We are experiencing the physical woes all too familiar to parents of special needs children. Holding Savanna is not difficult per se`. Holding Savanna for extended periods standing up, moving around, trying to complete the normal tasks of life, all while cantilevering away to balance her (as she naturally leans away instead of into us) is a different ball game altogether. Our backs are paying the price, and we are more conscious now, giving each other time to workout regularly. We find the workout routine is less about vanity or leisure, but more about necessity to build muscle to heal and mitigate current problems and perhaps delay further injury.

Here is a very short clip of her on the tube on the lake.

Do we dare let ourselves dream about what might be for Savanna? Before we drift off into never-never land, I would like to share some other “firsts” during this last few months.

For the first time, I can see the emotional derailment and predict the ensuing behavioral train wreck with good precision and fair accuracy. More clear now are the signs of disengagement from her environment. She loses all interest in things right in front of her. She shows no interest in many items that typically soothe her, except a very specific blanket that has a magical calming effect. She will not just want to be held, she will demand to be held. And if you can’t (or won’t), the path to the train wreck begins.

The path has stages and factors that affect how quickly you arrive at your destination, which is the behavioral train wreck or urban term “meltdown”. She will whine first, that kind of “I’m not happy whine…” The whine becomes a cry. This process can take while, but we are learning it can also happen quite quickly.

The train has derailed at this point. I have learned it possible to avoid the worst outcome if I intervene appropriately.

The cry leads to stumbling or stammering like a drunk all while dragging her blanket. She will either 1) run into to something like a cabinet corner, wall corner, or door jamb on her right side (where the dense hemianopsia affects her) or 2) fall down hard by tripping on the blanket or something in the sea of ‘things’ on our floor that seems omnipresent. This leads to the scream of “Hold me now!“ and that of “Damn that hurt!”

By this point, I have modified my plans for the day somewhat, and am holding her (sitting if possible).

It is difficult to recover from this series of events. I try to push through some days and it ends up generally alright. But, sometimes it doesn’t go so well. Sometimes this process takes 5 minutes. And, other times 5 hours. It really depends on things I am not knowledgeable about yet – or I would have addressed them intelligently.

At times I witness her eye deviate to the right (opposite what was observed before the resection) and this tempers my elation about her future. Diagnostics (mentioned in the beginning) have indicated nothing abnormal about these behaviors, but it is troubling as a parent given the history.

I joined the support group that our epilepsy program sponsors and attended meetings for the last few months. If you want a dose of reality as a parent in my shoes, this is the prescription. This group has been a great find though, as I learn more each time I attend.

For the first time, Savanna was evaluated independently (without me present) for ABA therapy, ST, and OT through an ABA provider locally here in Houston. ABA is Applied Behavior Analysis, and a method of intervention and therapy for those suffering the symptoms of ASD (Autism Spectrum Disorder). It sounds weird, but I liked it and I disliked it all at the same time. I knew she would struggle with new people and new activities. But, I also knew it would be a very good judge of where she is functioning with respect to interacting with the public.

The Preschool Language Scale (#5) and Functional Communication (Revised) Profile toolkits measured Savanna’s communication abilites, and resulted in a mixed scores (all pretty low) higher/lower for receptive/expressive communication respectively. This agreed with the evaluation results done by ECI at 32 months. The Verbal Behavior Milestones Assessment and Placement Program toolkit showed the way for an ABA therapy plan, recommending 35 hours per week of this type of therapy. OT skills measured using the The Peabody Developmental Motor Scales where she qualified for applying the Beery-Buktenica Visual Motor Integration subset revealed a score just a tick below normal in one category but, quite low in another. A calculated quotient score result was “poor”.

I received the reports in the mail and was not surprised at their conclusions, I was disappointed though, I have to admit. I interpret their conclusions with caution though, as none of the therapists were familiar with Savanna. But, this was a first: Savanna on her own for about 3 hours with people she had never met, doing things perhaps she may not have done in “just that way”, and no train wrecks. It was a good experience overall. (Thankfully, they were all familiar with dealing with kids with such challenges.)

Overall, this news about seizure freedom along with critical thought about our faith precipitates a giant sigh of relief. It allows moments where we take a deep breath and absorb the joys of life. Her experiences, our experiences, so early in Savanna’s life make witnessing her achievements that much sweeter.

Finally, we said goodbye to Ruth, our Au Pair from Australia. She was a big help with the kids. Maybe one day we will go down under for vacation and pay her a visit. May God Bless you, Ruth.

Ruth, our Au Pair from down under, has returned to the outback. She was so much fun, and we miss her a lot.

-dad

Occupational Therapy? What is it? video…

Posted on June 11, 2014 by kenlininger

Savanna has been receiving therapy since the early days of her epilepsy diagnosis and the resulting regression. These are called ‘services’ in the special needs world. Occupational Therapy (OT) is one type of service she receives. What is that you might ask? No, we are not teaching her to sew, paint, or cook, (although all that would be great).

Given her significant developmental delays that are global in nature, she needs help learning about her environment around her. Unlike a typical child who “just does” in many respects, she needs more deliberate education than the typical 2-year-old toddler. We teach her about aspects of how she occupies her time; what the shape sorter, the puzzle, the baby doll, the play fruit and veggies, are really about.

Since her medical diagnosis of ASD, we have learned that a more intense approach to her education works better. Overcoming her behaviors that restrict her learning is part of the challenge. But, with OT, the goal is maintaining interest and focus on a play-based tasks, completing those tasks, and making a new choice. What has worked well for Savanna is an ABA-style approach. We don’t just present the shape sorter, dump the shapes, and say “Okay, let’s go!” We break the process down into very small, guided segments.

We challenge her brain while recognizing her knowledge absorption rate.

We teach her about her visual field cut in a way that slowly brings her to see it and understand it for herself.

We work to reduce the difference between the motor skills of her right and left arms.

We focus on completing a task, cleaning up, and then making a choice about the next activity.

We encourage desired language skills.

All this, while battling her restrictive behaviors that often derail all education efforts.

Here are some video clips from recent sessions.

This is a little routine where she stacks the blocks in a free manner. She did great here, stacking 5 blocks!! (…and she can now stack about 9 blocks)

Notice we don’t just hand her a block, but it is a “blue” or “purple” block. We are always teaching. Also, notice she adjusted her holding hand when the stack go too long to manage. This action is a good sign of awareness.

The magnetic shape sorter was simply awesome this day! To see her do this so quickly was amazing.

The giant shape sorter speaks for itself. She has been working on this one for about 5 months now. Today wasn’t her best day with this toy, but still a good day.

2-pc puzzles. Very, very simple but yet very challenging in both concept and real play. The way we are starting the 2-piece puzzle is the way all previous activities started so many months ago; hand over hand, strongly guided.

The fruits of her labor in these sessions overflow to the rest of her life.

She listens more and screams less.

She obeys more and disobeys less.

She is able to get into more mischief, but also understands more about what she is doing (right or wrong).

She is learning.

I recently remarked about skills acquired by young children while learning to walk. Unlike those thoughts, I feel strongly our intervention in the form of OT and Cognitive therapy has altered her course. Maybe it hasn’t changed the ultimate outcome, but I do think we are affecting the rate she gains these skills. It is at her own pace, but one we follow closely and encourage in every way.

Many Thanks to Nikki at Reach Therapy and Tammi with ECI here in Houston, Texas.

More on her developmental progress in the next post.

Humble Beginnings, with video

Posted on May 20, 2014 by kenlininger

When we started this journey, we like others took video. I never posted it however, because quite frankly, this was a very short part of her journey. And everything happened so quickly, I just never dwelled on this media until recently. And lately, I have had numerous requests for “what did it look like for Savanna?”

She presented classically as do some infants with FCD (focal cortical dysplasia), meaning a severe structural problem in one are of the brain that affected her brain globally.

She did have “hyps” (hypsarrhythmia), a specific kind of chaotic brain wave pattern, diagnosed only with EEG (electroencephalography equipment, i.e. all those electrodes glued to her head). She had the clinical presentation of the Infantile Spasms, as seen in these videos. Rebecca had noticed the regression.

It was emotional for me to look back and watch these videos with my current level of knowledge of what it really meant. We knew nothing of what we didn’t know.

You can hear this in Rebecca’s voice in the first video, as Savanna was experiencing a cluster of IS (Infantile Spasms) before we knew it was IS, (or West Syndrome).

These videos are just a few days before diagnosis. You can see in the first one, where capture begins in the middle of a cluster, that the spasms were rather violent as she was very healthy at this stage.

The second video starts mid IS cluster, and ends with a complex partial seizure. During the IS cluster, you can see the momentary collection of wits in Savanna as she cries, then it just all goes away, and “Boom!”, a seizure. She experienced a classic ‘salaam’ seizure pattern (in clusters of about 8), where her head and arms flew outward and then immediately contracted inward in the matter of a second or so. She always had a right to left roll of her head as well which I think was indicative of the FCD.

At about 49 seconds the complex partial seizure starts. It is not a cluster, but just one seizure that lasts about 25-30 seconds. There are no words to describe my feelings when I hear her single sneeze at about 10 seconds into the complex partial seizure. This would become a trademark I could count on later in her life.

The third video is another collection of Infantile Spasms. She is more tired in this video, as the seizure are taking their toll.

The final video is in the hospital after an unnecessary ordeal in the pediatric ER and several hours of VEEG monitoring. This was one of many events caught during our first VEEG, which went for nearly 36 hours.

Pediatricians and PA’s are the first to see a child presenting in this manner. Parents don’t know the emergent nature of the situation, they just know something is wrong. Many doctors might mistake this for reflux, Sandifer’s syndrome, or the Moro reflex.

If you suspect your child has this condition, I would recommend the following action:

Take a lot of video. Try to get the entire body in frame.
See your pediatrician first, with video in hand.
Email the pediatrician videos.
Be as pushy a necessary to get to the doctor, but a good video seen on the doctor’s phone between clinic visits will drive action quicker than just being a pain in the ass on the phone.
The pediatricians consultation with a neurologist can streamline your experience in the emergency room. While this is an emergent matter, it is not immediately life threatening, and therefore not a condition properly handled by most Emergency Rooms. This is not judgement of emergency rooms or their staff. Rather, it is recognition that they are not staffed, equipped, or trained to diagnose and treat this condition with authority. They will initially go down a path of eliminating possibilities of what might be provoking the seizures, which is noble and correct, but an endeavor best addressed in an in-patient setting. Unfortunately, one must typically penetrate the membrane of the ER to access help in this scenario.
Get informed. See the Links and Resources section of this blog for a start on where to go for information and help.

A Published Essay in the Dads of DisAbility Project

Posted on April 15, 2014 by kenlininger

just some Stay-At-Home-Dad experiences

When you search around for the paternal viewpoint of having a child with a disability, you struggle to find information. The maternal viewpoint on the other hand, plentiful information all around.

Gary Dietz authored and collected 42 pieces and organized them in a strategic way than keeps you wanting to read more. The book is titled Dads of Disability, and it is a compelling read.

Some essays are about an acute period, such as a specific event or moment in life which was poignant. Some describe the author’s life experience more broadly by discussing multiple events that span significant periods of time.

Gary divided the collections of essays into sections that resemble the cycle of life. Such as life, there is a beginning, middle, and an end. Some parts very joyful, some parts somewhat dark. All are important and provide borders for a portrait of life, life as a dad…

View original post 1,015 more words

Tip-Toes, Uh-Oh’s, and a little Autism Awareness

Posted on April 5, 2014 by kenlininger

I recently had our second appointment with Dr. F, at The Autism and Learning Center here in Houston. I tip-toed through the consult with pure confidence and all answers this time. You can read about my first experience here. Dr F asked specific questions. I had specific answers with specific supporting documentation in hand. I spoke when spoken to and the visit went smoothly. These Specialty Clinic Visits have an invisible itinerary, you can read about that in The Specialty Clinic Visit – 101.

A point came when I realized she was hung up on incomplete labs. I tried to get the necessary draw completed, but as usual Savanna would only give us so much blood. (A recent blog post, The Blood Draw, describes a typical event these days.) I insisted they review the records as I was confident we had historical results for everything she wanted. She suddenly assigned another assistant to begin reviewing the records for results with labs which could answer her questions and support my assertion.

Onward with clinical observation.

Suddenly Dr F introduced to the two other people in the room that were silent to this point. One person was her new nurse practitioner (NP) that we would be seeing long term. She was as nice as could be with a very warm and inviting persona and it just seemed like someone I could talk to about Savanna at length with ease and without judgement. Then I find out through her own admission she is not only a mom, but has a child with special needs as well.

During the clinical observations period, Savanna responded to verbal instruction once and pointed at something she wanted repeatedly. She didn’t randomly and compulsively dump the toys nor insisted on the doors be closed to the room. (These things still happen at home, but didn’t at this particular time.) It was phenomenal. Dr F. remarked, “I didn’t expect to see this today!”

My words, “I know.”

This time I created the awkward pause. So, I decided to interject some mushy conversation since the fact-finding and presenting part of the visit was clearly over.

Since our last visit, I processed the diagnosis to the extent 2 months would allow. I don’t see this situation as final. I am on a mission to give my daughter the best chance she can have in this world. This is why I am here today, not because you wanted to see her for a follow-up, but because I respect your judgement about what she needs to help her.

Some of the reading material you suggested I have read. My knowledge about my daughter’s condition has increased dramatically over the last 2 months.

Thanks to being labelled with an IDC9 code of 299.00 (ASD), the therapy allowances are suddenly unlimited (for now). (Smiles all around in the room?)

I initiated another speech evaluation (here is your copy by the way…), and increased her therapy three-fold with new goals from the evaluation. While she isn’t receiving ABA therapy yet, we are doing more in that direction versus less. It has made a difference just in these 2 short months.

I see her problematic behaviors more defined in black and white and this guides me on how best to help her understand the world around her. We have tried diligently to be more effective at therapy, formal and otherwise. I see her improving quickly. But I felt like I could not state that in the beginning, because you didn’t really care what I think.

So I had a moment where I sounded informed, confident; like someone who leads from the front versus the stereotypical paternal figure who is considered by many in the medical professional community to be sub-tier and capable of care slightly beyond babysitting.

The assistant combing through the records confirms records are available that speak to blood work Dr. F. ordered, so no further labs are necessary.

Dr F felt Savanna would benefit greatly from having ABA therapy and was disappointed to hear we couldn’t get into the schedule at the center she recommended until about September. Dr F suggested if we had the means, we should consider an abbreviated ‘slip-shot’ version (as she put it) until we could get full-time placement in a center.

On the ride home this particular day, these thoughts crossed my mind with respect to Savanna’s progress.

A typical child moves through the phases of learning to walk almost regardless of parental input. Our sitting, crawling, and walking gives example but few parents understand the mechanics of these movements. Why would you unless you were a therapist. Normal kids just do these things! We endlessly try to prevent bad falls. But that is about it for the typical family. The determined child will learn how to walk on their own, at their own pace, regardless of the parental input. Perhaps Savanna has experienced some of this type of development as well, and is just doing better all on her own regardless of all my efforts. I like to think I/we have a high level of impact on her development. But this measurement is elusive and will never be known in all honesty. Scientific evidence trends toward better outcomes result from aggressive early intervention, but it is definitely not a guarantee.

On a more fun note…

We recently went to The Houston Livestock Show and Rodeo. It has been a long time for me, but I actually came to this show with someone I worked for many years ago, with livestock. I worked the event, and didn’t walk around much. Being there sure brought back a lot of memories of working on the farm. Mommy was in her element for sure. I was most worried about Savanna and the large crowds. I feared she would have a meltdown. Ironically, our six year old was the one who was fraught with fear that we were going to lose someone. He couldn’t have fun until we found the big slide…! Savanna, well she had the time of her life!

Thanks to the help from Dana and Jennifer at The Speech Emporium, Savanna is breaking through the screaming with words! She can consistently say Mama, Dada, and Uh-oh (when she drops something on the ground)! We are working on ‘go’, animal sounds, and signing. She seems to know the ‘more’ sign but doesn’t do it with consistency. Augmented communication and picture exchange programs on the list to try. This latest spurt of development has been wonderful to witness. I honestly wasn’t sure it would ever happen after what she has been through. Here is a short video demonstrating these skills.

Despite the orthotics, she is tip-toeing to reach things on the counter. She can use her step stools now to assist her in getting what she wants. I have seen her pick it up and deliberately put it near the cabinets so she can use it to access more counter top items. Her ability to explore her world just increased in dramatic fashion.

And Savanna loves to explore her environment. Yes, her activities seem more self-limited to a narrow set of activities or routines not including any imaginative play and little social interaction.

She generally likes opening drawers for the sake of opening them. Sometimes she will even dump whatever resides in the said drawer if she can reach the contents. If she dumps something that gives her a positive ’cause effect’ response. For the longest time, it seemed that is all she would do it dump toys, empty shelves, and help keep the sofa clear of anything.

Today, she opened a drawer, and stood on her tip-toes to look inside! I have not seen her do that until recently. She looked inside, then at me, and then inside, and then closed the drawer when I asked. It was that look in her eye that really grabbed my attention, “I am looking in this drawer and I know you are watching me Dad…” I see this in typically developing kids, but never have I seen it in Savanna until this experience. Little moments are great.

Recently, I was upset at why the floors suddenly were so dirty in our house. I clean all the time! Something was amiss! I started checking Savanna’s toddler cups for incorrectly installed valves or lids. I was surprised to find she had bitten through the rubber mouth piece on two cups. Interesting…

This past weekend, she managed to crawl out of her crib on her own. Uh-Oh! I have known she could do it for some time now, but she never tried until recently. While a really great development cognitively and physically, it is unsettling as this is a game-changer for sure – as all parents understand.

Savanna loves to climb. She has master maneuvering the steps on the playground and scaring the daylights out of me with her wobbly off-balance gait once at the top of any play structure. She has even decided to climb the chain ladder on the structure just behind our house. It is quite something to watch.

She has many teachers when it comes to climbing! Tristan is at the age where his strength to body weight ratio is ideal for scaling all things ‘play structure’ related with amazing ease. And Brandon and Austin are not far behind him in ability.

Recently we tried to conduct a PT session outdoors at a nearby park. The same park we visited many times.

I did have to rush a little through the wake-up process to make it to the park close to on-time. Savanna would have none of it, absolutely zero participation. Not just that, but her behavior devolved into just screaming and crying, uncontrollably, nearly inconsolably. She normally loves this park?

But she was finally in full meltdown mode, for all to witness, and I couldn’t stop it.

What was different?

Perhaps the abbreviated transition from nap time? Difficult to say at this time.

She eventually calmed down and we did a couple of things for about 5 minutes, but she was on edge.

This was my reminder to be Aware of the Autism.

Another Diagnosis Day: Autism #2 (Video)

Posted on March 10, 2014 by kenlininger

My apologies. I included a video in the original post (at the end), but it didn’t work for some reason. It is fixed now, or you can view it here.

It begins at Christmas after returning from our long trip to see family. A few clips of time on the Christmas gift of a trampoline, Austin falling asleep in the booster seat at dinner, Savanna during O/T, and then some selfie video trying to get her to talk for the camera. Enjoy.

Another Diagnosis Day: Autism.

Posted on March 10, 2014 by kenlininger

I have struggled to write this post like no other. Unending research and editing that evolves into complete rewrites has left me tired. I will cut straight to the chase. A two-hour assessment of Savanna by a specialist resulted in the medical diagnosis of ASD, (Autism Spectrum Disorder) January 13, 2014. Unlike her epilepsy, we were not blindsided with this news as we have seen it coming for some time. You can read the beginnings of concern in the 6 Month Seizure Free post.

[Sidebar. For those finding this post searching for Autism and Epilepsy: a brief history. Savanna was diagnosed with IS and CPS at 12 weeks. Treatment for IS was successful. CPS became medically refractory. She underwent a left TPO resection in 2 stages concluding on 4/1/2013. Still seizure free nearly 1 year later.]

The diagnosing doctor (Dr. F), was very direct, to the point of being hurtful with her demeanor. I think she had the best interest of the patient and family in mind, but it didn’t feel that way during the assessment. I had mixed emotions about the diagnosis. I left the assessment feeling relief, sadness, thankfulness, and a bit of depression all mixed together.

I admit, I do feel some relief from the diagnosis. Why? A trained professional evaluated my daughter and diagnosed her with ASD, a disorder that not only explains many of her difficult behaviors but that gives us new direction and new hope that she will get through this; that we will get through this.

I do feel some sadness from this new diagnosis. I read a lot of similar family blogs and study scientific literature about her situation. From what I have read, these problematic behaviors are not a result of the brain surgery; in that she is ‘only delayed’ and one day will not be delayed, but normal.

I know in my heart the situation is more complex than just the need for extra TLC. We have been adrift in a sea of unknowns, ‘maybes’, and ‘maybe nots’, and I feel thankful for the new direction.

I am thankful someone in the professional medical community sees what I see. Often times I feel alone managing the chronic medical issues of my child. Moments like these I feel support, understanding, and recognition of how difficult the situation is regardless of how well she is progressing relative to her initial prognosis so early in her life.

Then, the doctor leaves the room. You exhale, begin comprehending and embracing every word that person said. I cannot lie; there is a new wave of depression that swells over me. What do I do now? What does this ultimately mean?

As a SAHD (stay-at-home-dad), I am also her daily therapist. I work on compliance, cognition, language, motor skills, etc (outside of all the formal therapy of course). Generally, I do not feel like the ‘fun’ parent despite all efforts to supervise therapy in a play environment. Sometimes, I think I provide security for her, and when she recognizes that it feels good. I struggle with the balance managing time between Savanna, Rebecca, and the other kids.

When Mommy is not working, it is all fun! Mommy can walk down the stairs, scoop up Savanna in dramatic fashion at the end of any given day, and conveniently answer the knock at the door. The visitor is greeted by a Savanna who is suddenly elated to be with Mommy!

Our situation probably looks wonderful to the visitor of 5 minutes. Everybody seems happy during these times. Not even 10 minutes prior she was entrenched in an epic battle for some reason; tears, screaming – you name it.

It is then too that communication ‘about how great everything is’ through video and voice calls occurs.

Everything is great. And, many any of you may wonder what I am talking about, as from afar, nothing seems amiss. I would argue the difficult times are more difficult, but the good times are better and more frequent too. Usually, I don’t like to be in the community when Savanna is having a bad day or time. I don’t take pictures of these times, and usually don’t take video. But, this is becoming unavoidable as time goes on.

It is great to see her learning through the crying, screaming, and wining. I mean this sincerely too, because this was not always the case.

It is great that her motor skills have developed in a way that she is ambulatory and can explore her environment and tackle playgrounds. This has helped tremendously with her emotional regulation.

It is great that she is able to satisfy some of her compulsions as they change. And since we now recognize some of these compulsions, we can help soothe the situation with some proactive measures. For example, we can make sure all the doors are closed in her little environment here, and that mommy’s purse is either out of sight or on left should only. These are known as non-functional rituals.

It is great that she is very aware of every screw hole, or any hole or dimple, in every toy. These discoveries derail therapy sessions and create insatiable obsessions it seems. Trying to control this behavior is challenging. This is known as a preoccupation with a part of an object. While often cute to the casual observer, it is abnormal in intensity and focus.

It is great that she loves yogurt covered raisins. It is unfortunate that she will eat almost nothing else. Satiation eventually occurs and the fixation moves to the next ‘favorite food’. She has what is known as a self-limited diet (don’t we all at some level?), but hers is severely limited. This keeps us dependent on her feeding port more than we hoped at this point in the journey.

It is great to hear her babbling about two to three sounds with what seems like some communicative intent. We must be patient, because every child talks at a different time. This is what everyone tells us. But as the weeks and months pass… what then? We continue to model words with practical function but her rate of acquisition of these particular skills is very slow at best. It is frustrating for her and us too.

Most of our friends and family are eager to debate or discredit the ASD diagnosis in a loving and well-meaning manner. “All kids do these things. My [normal] kid did ________ when they were little.” Or, “My friend’s child would only eat ______ for a year…and they were normal.”

I would like to just agree with you collectively and move on.

Many of you also may wonder “She is so young. How can [they] tell she is Autistic?” Autism is a clinical diagnosis at this time. It requires either a medical professional to diagnose the disorder medically or a behavioral therapist to diagnose it from a behavioral perspective. So how do these people diagnose ASD? They both use the same tools.

Specifically, Savanna was diagnosed using the CARS2-ST. (Childhood Autism Rating Scale, 2^nd edition, standard version – there exists a version for Asperger’s Syndrome which is –HF), a toolkit developed over a 15 year period from 1971 to 1986 involving more than 1500 patients. You can read all about it with a quick internet search. Above 30 is considered ASD that is mild to moderate. Above 37 (with some additional factors) is considered ASD that is severe. Savanna’s raw score was 46.5. Standardized results were: T-score of 61 and a percentile rank of 86.5.

The CARS tool is only one modality of measurement. But, scientific evidence shows it aligns well with other methods for diagnosing ASD at her age when employed by trained professionals.

Life can be challenging with a child like Savanna, especially in new and unfamiliar environments. Her compulsive behaviors are cute, but they become restrictive. And, if she can’t satisfy the compulsion, emotional regulation suffers, and attempts to help her regulate have varied outcomes.

When she cannot understand, be understood, or be satisfied, her unhappiness and frustration boils over in 2-3 year old fashion -on steroids. It is different from what I have experienced with our other kids, because they can communicate in a way I understand. With Savanna, I am often left guessing about how to help her. As a result, her behavior varies widely throughout the day.

Yes, I have figured out what she needs and when, for the most part. But addressing her needs in a way that minimizes the screaming really isn’t helping her overcome the communication barrier.

We too are learning as a family. We reinforced bad behaviors at an early point since her second surgery. At the time is seemed harmless and so wonderful that she could laugh and push her brothers – that she was even capable of it! It is not funny anymore. And let me tell you, teaching her to stop such behaviors is its own challenge.

Many believe for children on the spectrum, some of the intense frustrations are rooted in their inability to communicate. I would agree with this generalization with regard to Savanna.

Her intentional communication skills are at about a 12 month range. Even still, she exhibits deficits not present with typical children. This is not a guesstimate or just my opinion, rather the result of years of a scientific approach to measuring and rating speech and communication abilities. Some examples…

She does not eye gaze or a gaze shift when trying to get an object from a person. She does not look at our faces with the intent to understand what we are looking at, or to communicate her desire. This means she doesn’t associate the holder of the juice cup as a necessary part of the conversation to get the cup. She will just continue to scream at the cup instead of shifting her gaze (eye contact) between the holder and the cup, indicating to the holder she wants the cup.

She does not consistently point at anything for any reason, at this time. Yes she points, but it seems random in occurrence even if an appropriate gesture in the moment.

She doesn’t modify her behavior if she isn’t getting what she wants, unless you consider screaming louder a behavior modification (which the therapists don’t!).

Socially, she is not learning from observation in the same way or rate as a normal child learns. At first glance she seems very social. When you watch her longer, you realize there is very little reciprocity (positive or negative) in her behavior which is quite abnormal. I will say though, that having her around all of our other kids (supervised and in free play) is probably her best social therapy. She is learning about social interaction from her siblings in a safe and loving environment.

I have noticed too that diet, gastrointestinal balance, and the right environment can have a dramatic affect on her natural happiness. None of those things are constant though no matter how much we try to keep them that way.

Sometimes, after some torture in the bathtub (otherwise known as: ‘just trying to wash her’), we chase her around the room and she loves it! Mommy plays “I’m gonna get you!!”, and Savanna goes wild with laughter. This happiness is much like happiness our other children experience and is such a blessing at the end of a difficult day.

Our subscription to the science is lifelong and wholehearted. That does not mean we will not question decisions about her care but rather engage our doctors in educated conversation about our options, her options, until she can decide for herself. We will secure as much therapy as appropriate and focus on a new path of learning and new way of learning.

In our last clinic visit, Dr V said this “…let’s see how her language comes along…” The implied relationship of her overall development in relation to her language development is quite profound. I didn’t really understand what she meant at first, or at least the magnitude of it, as she was so nice about how she said it.

The more I research our situation, the more I understand the implied meaning of that statement. Given her experience with such cases, and all of the circumstances, it is probably the best bellwether we have at this time with regard to her ultimate development.

Savanna’s Autism is not classical in the sense most people think of it. Many people say, “She doesn’t look Autistic?” She has a major neurological developmental problem to start with, so perhaps all this is related. An interesting thought: there is nothing to say that person who meets the criteria today but no longer meets the criteria at some point in the future, ever meet the criteria in the first place.

We know undoubtedly that our part in this is to give her the very best chance we can, as much therapy, love (often times tough love), & encouragement as possible.

I have more to share about Savanna, but have been mentally blocked by this essay. I leave you with some nice pictures from the last couple of months, and a video. (The ice pictures are from a recent “winter storm” here in Houston, a rare event I understand.)

“””Static””””
(What happens if you just sit on the trampoline and others jump.)

So not sure why the video is so challenging in this post. It doesn’t seem to want to play for many. I apologize. I am trying again now.

dad life.

Posted on January 29, 2014 by kenlininger

Reflection. I can do this sometimes late at night or very early in the morning. I think about our family, what an amazing journey it has been. In less than a month, I will be the Dad of a 6 year old. Good grief, where did the time go? I often find “mom” stories out there, written as family stories. It is rare that I find the “dad” stories.

Today, I want to share a post from a Dad named Ross. They have twins along with a older child, very similar to our situation. Their pregnancy was rife with danger and uncertainty, yet the conclusion was pure joy and miraculous. This particular post from this Dad exudes thoughts and feelings I had not only when our twins were born, but when I unplugged from the workforce to be a SAHD. He does follow up with another post (part 2) that does describe the fun moments in their day to day journey. It is amazing how small those were at the time, but how big they become later. Our twins are older now, but boy does this post bring back memories.

I have many things to share about Savanna’s Journey as of late. It has been a fast start to 2014. We have already met our insurance deductible (in theory), and January is not over yet! Stay tuned. Ken.

dadlifeblog

I haven’t written a blog post in awhile and that’s mostly due to the fact that every day is the same. Wake up around 4, hold a baby until 6, feed the twins at 6, Maebyn wakes up at 8:30, feed Maebyn breakfast, feed the twins again, feed Maebyn lunch, put Maebyn down for a nap, feed the twins again, Maebyn wakes up from her nap, feed Maebyn a snack, feed twins again, MaK gets home from work, feed Maebyn dinner, feed twins again, put Maebyn to bed, feed twins again, space out on couch, feed twins and hope to go to bed for a couple hours…. And repeat.

The day to day adjustments have been hard and taking care of three kids is not easy but by far the hardest thing that I’ve learned through these last couple of weeks is I no longer have a life outside of…

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A Message from Mom: Dear Dr. Von Allmen…

Posted on January 15, 2014 by kenlininger

First a little context….

We set out on our trip to Kentucky and Virginia for Christmas early, so Rebecca could squeeze in a work trip to Kettering, OH – which meant we would be compensated for traveling. A day after we arrived in Louisville, she left on her business trip. Scheduled to return on the 18th, she called me to tell me she leaving at 12:30 pm.

I got a call around 5:30 pm from her saying she was now just leaving. I was frustrated. I was sick. Savanna was sick. Tristan was sick. It was becoming unpleasant as Savanna was a complete handful. We all lived through it-

A few weeks later back home in the routine, she sends me an email with a response to a letter she wrote to Savanna’s doctor. The timestamp was 3:28 pm on the 18th of December. But she told me at 12:30 she was on the road? Something must have happened in Kettering that kept her there but also allowed her the time to compose such a beautiful letter. She never mentioned to me that she sent a letter. I sent one too, but not nearly as articulate (sorry GVA!) Rebecca rarely has time to contribute to the blog directly and this wonderful piece deserves sharing.

It captures her thoughts and feelings at this time of the year. I completely agree with her expressed feelings about Savanna’s treatment, the regard for her doctor, and the wish to help others. I might have a wider field of view with regard to ‘how she is doing’ than Rebecca, but that is just me. More on this in a future post…

…………………….

Dear Dr. Von Allmen,

I want to thank you with all my heart for the amazing care you have given Savanna (as well as me & Ken) through our journey. When her spasms began, I was afraid to even dream that she might be one of the rare “lucky ones” who could be spared from a lifetime of seizures & the many associated challenges through a miracle surgery. I prayed like I’ve never prayed in my life for God to guide us and give us the strength and energy we needed to survive and care for her. I know in my soul that he led us to you. The confluence of factors that had to come together for us to move to Houston, for Savanna to get the right diagnosis and treatment as quickly and effectively as she did could only have come by His hand. Why she (we) were found worthy, I will never know.

I have so much admiration and respect for you, as a mother, as a woman, as a doctor, and as a bold entrepreneur in your field. You saved Savanna’s life, her quality of life, and in doing so, mine as well.

She’s doing amazing. We traveled to Louisville, KY for Christmas, and it’s pleasantly reassuring to see her go through the common childhood illnesses of Strep throat, ear infections, and the like.

She’s happy. She’s healthy. She teases us by walking and looking back over her shoulder to make sure we are watching / following her. She dances and shakes her booty on request. She waves and blows kisses. She plays cars with Austin, and wrestles with Brandon. She giggles when thrown in the air or on the couch. She runs and giggles from “I’m gonna get you” when I chase her and eventually give her zerberts on her belly. She’s putting things into containers & taking them out. She’s starting to show an interest in books with a few torn pages as casualties. She’s social and likes to explore and meet new people. She snuggles. She climbs up and down the stairs. She’s starting to make more sounds in addition to “mama & baba”. She’s starting to use more inflection, and saying pa pa, da da, … She’s starting to do puzzles. She’s graduated from AFOs to less intrusive orthotics. Ken feels good enough about her progress that he is talking about possibly going back to work next year, which will allow me to possibly cut back to 20 hours / week, down from way too many hours.

None of this would have happened without you, your dedication, your training, and your willingness to aggressively treat her.

Savanna was first diagnosed on 12/19/11. We spent that Christmas Eve & most of Christmas Day in the hospital before Ken broke her out. It was hard to hear “Merry Christmas” that year. My dad wished us a “Blessed Christmas”, and we found that to be more appropriate.

If you have anyone going through a similar situation that needs someone to speak with, especially at Christmas time, please provide them with my phone number.

Have a Wonderful, Merry, and Blessed Christmas with your precious family. If you ever, ever wonder between long hours or thankless tasks, if what you’re doing is worth it, know this, it absolutely is, and I’m so grateful to you, Dr. Tandon, and your entire team for what you’ve done for us.

Rebecca

Savanna's Journey

Infantile Spasms. Partial Epilepsy. Surgical Treatment. ASD.