I’m Going with Them Dad. Okay?

Posted on January 19, 2016 by kenlininger

Fireworks. Looking for inspiration I came across some fireworks pictures I snapped last July 4th. This picture shows a typical firework just after the in-air explosion to 3.2 seconds later; revealing the path of each burning ember.

Metaphorically speaking, I see Savanna’s development the last 6 months like the firework picture, several areas of growth exploding independently, creating a wonderful overall effect, but also showing signs of stall as the burning embers drift with the wind – propellant exhausted.

Like the firework picture, I actually see Savanna as she was 6 months ago and how she is now – all at the same time.

I hear her opine on and on about different subjects! To the point I find my self asking her to be quiet sometimes. I hear grammatically proper and phonetically correct sentences. I hear an exploding vocabulary, with nearly unlimited parroting.

Phrases such as ‘fwench fwies’, are quickly being replaced with the correct phrases. Suddenly, her social interaction and behavior looks normal? Her physical ability now allows her to ‘hang with the boys’ for the most part, feeding the positive social interaction.

I praise her advancements since our last outing to the play place, playground, or the stairs that lead to the Speech Therapy facility. I do not praise mediocrity but rather encourage exceptional performance and behavior; both with our boys and Savanna. She responds to that fuzzy but hard line.

I am amazed!

I also still hear the struggle in her language. I hear the difficulty pronouncing complex sounds. I hear echolalia. I see the inappropriate grading of physical gestures towards her brothers. I see the undeniable speed difference with which she processes and reacts to new environmental input.

Like the drift evident in the fireworks picture, I see her coasting for the moment. And when she can’t respond to the fuzzy but hard line like her brothers, well….

I am concerned.

I am both amazed and concerned at the same time.

For the first time, I have observed Savanna realize her challenges with expressive speech. Watching her put up emotional walls and turn inward was profound. My mind raced forward 10 years regarding her emotional health.

Discharged in September from facility-based ABA, she has progressed to a level where she can function in mainstream environments, or so we think. Similarly, she was discharged in November from in-home OT services for the same reasons. These 2 months were like letting go of the bike when you have been running along with your 5-year-old for miles holding them upright…. And suddenly; there they go; on their own. And all the ‘what if’ scenarios start to play out…

Her BCBA at the ABA facility recommended that we start in-home ABA services to surveil her progress. Her developmental pace is what we now monitor. Is she keeping up or does she need help? A neuro-psychological evaluation in the coming years will help us identify specific areas which might need extra attention.

Right now, life with Savanna is such a blessing and joy as she seems to fit right in with her peers.

Well, there are moments of course that are very unpleasant, like when she goes # 2 in her pants. Yeah, that sucks – still. It sucked a lot less when she wore a diaper, but she has mastered #1 and I find she loses that mastery when the diaper goes on or when the routine changes, so now what? We are going on a year of #2 training. She has no desire that I can see to accomplish this task, despite all our incentives. I feel defeated in this area for sure.

She is in fact, only 4 years old. While I see her as a professionally trained child with nearly 2000 hours of formal therapy, most see her as just a 4-year-old little girl with a short haircut and cute sunglasses. She has what? She is missing what? She can’t see what? Really?

Yes, really. That is amazing I know! God be praised!

Savanna follows much more than she leads, which is okay I guess. She does initiate activities Austin enjoys, like building anything Lego, coloring, etc. She will mimic just about anything Austin does. Thankfully, she still sits to go pee pee! But, I won’t be surprised if she decides to stand up like Austin, lol.

She is also great at being mischievous. A hidden talent, no doubt. A short example:

Not long ago, we went to ‘Hot Wobby’, Savanna lingo for ‘Hobby Lobby’. I only needed a picture frame that was already in my mind. They (her and Austin) walked away around the corner and I thought to myself, “they will be okay” as I let them go. I could not find my frame, and then I heard ‘the devious laugh’. I turned the corned and found them with a couple hundred gift cards and envelopes scattered in two distinct piles in the aisle. It almost looked competitive, like who could make the bigger mess! I was too embarrassed to even take a picture.

Savanna was proud of herself and the look on Austin’s face turned from priceless to fear as he realized I was there. He knew he did wrong and immediately covered his butt with his hands, because Yes, I am one of those parents! Savanna still has both frontal lobes but, sometimes I wonder about the function as she didn’t get the ‘wrong’ at all? lol.

Noteworthy is the increased tolerance and patience from her brothers including her twin brother. Not just the expected empathetic response to your sister being hurt, but truly being patient with her knowing she isn’t behaving appropriately. Just when I think they do not ‘get it’, I see the interaction when a friend or classmate comes over who has no awareness whatsoever of Savanna’s challenges.

It is then that I realize the real affect of Savanna on them. Heavy is my heart during these moments of reflection. What will they be burdened with when I am gone from this earth and Savanna needs a lot of help? Their preparation is under way already.

In June we ‘graduated’ a pre-K and 1st grader to Kindergarten and 2nd grade. Savanna regularly proclaims “I will ride the bus Sunday!” (she means some day). She is right.

Early into summer, I thought Swim Lessons would be a good idea! Savanna’s relationship with the water is sinusoidal love-hate. This period was one of hate unfortunately. Challenged by her own behavior, she had difficulty responding during the lessons, despite this cute picture.

Despite all the protest and hassle, Savanna did learn. And, she demonstrated that later in the summer.

Vacation! FL-VA-KY this year. Destin, FL, was our first stop for some time in the white sand with Rebecca’s family. Still enrolled in facility based ABA at this point, Savanna’s day included immersion in all things ‘appropriate social interaction’. She was happy showing off her skills and getting all the positive praise. She loved the beach and the pool, but not the ocean. NOT the ocean. I don’t know why. She didn’t even like us being in the ocean.

She talked constantly during our stay in Destin. Proving she generalized a skill, she learned everyone’s names quickly, 16 other people besides our little family of 6. She initiated a lot of conversation.

But still, she was three. And, so was Austin. This picture during our attempt at a group picture, pretty much says it all – or a lot of it anyway!

Our clown show arrived at Grandpa Ken and GranShe’s in VA house where Savanna once again amazed them with her independence, happiness, and seemingly new-found language. Our boys love their house as it is on the lake with a large piece of mature woods, perfect for adventure and exploration.

Savanna was in a period of love with the water at this point, despite her recent protest at the ocean! Once unthinkable, I now envision her someday riding the inner tube, or whatever, by herself.

A quick stop in KY to see more family. Savanna was such a joy during this trip.

Returning from our trip, we ushered off the other kids to school. While it felt good to put them on the bus, the unrelenting waves of unnecessary financial solicitation began; whereby the school and the PTO ransom the emotions of our children to puppeteer our check-writing hand. I wish they would just ask straight up for money and stop the nonsense. Soon after, the homework followed. You know, the homework that always leaves you wondering what do they do all day at school? (Austin is such a character in this picture!)

We have a lot of Veteran’s in our family and to them, I say Thank You!

We have 4 birthday’s in our house during the fall. This year, Mommy celebrates the big Four O! (I am sure she is glad I added this, lol!) Then Austin and Savanna turned 4! Their journey: amazing! God’s plan is at work. Finally, Brandon turned 6. He is the middle child, enough said. HaHa! Austin is a little poser!

This picture of Brandon’s SpiderMan cake is a great one of Savanna. Photographing her is often challenging. Her eye contact is far less than her brothers – it is a constant battle. Just about every photo moment takes about 100 pictures to get a decent one, and she often is still looking away. Not today! (Yes, Daddy made the cake – that’s right!)

Despite the cute rainbow dress in this picture, Tom Boy best describes Savanna’s typical behavior. She usually wants to wear Austin’s underwear, Austin’s socks, Austin’s pants, Austin’s shirts, and for sure Austin’s Jackets. Her latest wish is Austin’s shoes, (that are like 4-5 sizes too big.)

These pictures are the best. Taken on September 20th, their birthday, Austin is her Angel for sure. Yes, Savanna is able to interact with him on his level, but he is patient and tolerant of her as she learns.

Girl toys? Not so much.

Swords. Power Rangers. Ninja simulation. Lego blocks. Yes!

Girl pajamas, sometimes. But, only over top of the boy ones, lol.

Here she is just wanting to do what the boys are doing, shortly before Halloween, field testing the Halloween gear of course. (Almost none of this gear actually survived to see Halloween.)

Then Halloween arrives. Sigh. Oh yes, Daddy’s favorite Holiday – not! A day of memorial has morphed into extreme candy entitlement. An elementary study of the foundation on which we celebrate some of our ‘Holidays’ reveals significant migration from the original intention. We participated anyway because it is in fact Rebecca’s favorite Holiday, second only to Christmas.

Here is a cute video showing Austin taking his daily medicine from Savanna. You can see in the video that Savanna hit Austin hard with the plastic sword on accident. She displayed zero empathy and zero outward understanding she made a mistake whatsoever. This kind of behavior is still a bit of a problem.

And then Brandon… He decided to start a game of ‘Hit the Butt’. Yes, I know, judge me. I have let it go because Savanna loves it so much. Here is a little snippet of what that is like on the platform swing.

By the time October 31st actually arrived, most of our costumes showed significant signs of wear and (ab)use, as the daily play routine 3 weeks prior included mandatory use of all-things-Halloween. Luckily this event happens at night. Savanna did well, still quite slow, but she participated far more than the previous years.

Thanksgiving was great this year as we hosted family from CA. By now, Savanna was really warming up to Mommy. She has really been a stinker in that regard, being a ‘Daddy’s girl’ to a fault. (it was an ABA goal…to address Mommy) But, mommy handled it well. And finally, the pendulum changed direction and we started hearing her ask Mommy to “come help”, “come see”, “take me with you”, “No! I want Mommy to brush my teeth, wash my hair, etc…”

Here she is in a video compilation performing in a ‘Sing-A-Long’ for Thanksgiving at her school. A familiar daytime place presents 3 opportunities for nasty falls in the evening as her visual field cut gets the better of her at night. Knees scraped up, she begins to derail emotionally as I usher her into the staging area. Only Mom’s in there (Mom’s I don’t know), I feel the eyes of judgement from all around. For a second, I contemplate giving up and giving in. Then, I get right in her face and we work it out with tactical technique and surgical conversation I re-engage Savanna in the activity. I promptly leave without looking back while Savanna cries, knowing she will be okay. The onlookers thought I was a complete a-hole Dad for sure, but Savanna responds. And respond she did! Tristan, 7-years-old, captured these video snippets.

Recently we were in KY for Christmas and were eating lunch at Aunt Kathy’s house. Savanna wanted Mommy to come see something. Mommy assured Savanna that she would ‘come see’ once done eating.

Savanna could not wait. She came to the table, security blanket in hand (finger in the loop formed by the tag), and grabbed Mommy’s hand proclaiming “Mommy! You are done. Come with me!”

Everyone got a good laugh, and was impressed at some level.

November was epilepsy awareness month, with a special week in December for Infantile Spasms. It passed quickly for me this year. Watching my Facebook news feed turn purple, I failed to address it out loud this year in any meaningful way.

I often struggle with Savanna’s amazing progress given the prognosis that comes with such a devastating neurological condition. Why?

I could leave that life behind and operate under the assumption she is healed or cured. But science doesn’t see Savanna’s situation as healed or cured; the same science that provided the course of treatment that helped her.

It may just be semantics to some, but I see Savanna on a path to resolution, not healed or cured or even on such a path. My wife recently told me 99% of people would think I am wrong; that stopping the seizures is equivalent to cured or healed in their minds.

Cuts and broken bones heal. Healing involves restoration of health, like ‘as it was before without loss’. Removing brain cortex to gain seizure control is not a healing process in the true sense of the word, but one of resolution. And no one truly understands the condition of the remaining cortex, as the underlying etiology is unknown to a large extent.

One could argue she is past the age of her West Syndrome, thus classifying this as resolved. The cold truth is that Savanna is still very early in her journey with epilepsy. Relief of her seizure burden by removing the offending tissue only guarantees seizures won’t come from that area of the brain ever again, nothing more, nothing less. Her risk of experiencing more seizures is elevated.

Savanna remains seizure free, nearly 2 years and 9 months. She also remains medication free, more than 2 years now! (Still an Engel/ILAE 1a surgical outcome for sure.)

I will always watch for seizures. I can’t even look at another baby or child the same way, let alone Savanna. The innocence is long lost, stolen in the dark of night. In broad daylight I work each day to regain a little bit of security. I do this without anger toward God. I do not believe he wanted epilepsy to be part of her life.

I believe God’s plan is for each of us to find the good in life. I consciously choose not to look away from Savanna’s past partly because it fuels my passion in actively helping others navigate once finding themselves on a similar and unlikely journey as a parent to a child like Savanna.

Segway to Dance Party! This is a girl who had global discontinuities on her EEG (proverbial EEG ‘flat line’), global hypsarrhythmia, and really nothing at all normal happening in her brain at 12 weeks old. Look at her today!

As long as we are able, we will make the pilgrimage back to KY and VA to visit family over Christmas. At Grandpa Ken’s and GranShe’s house, we went on a ‘hiking adventure’ in the woods, well kind of anyway. I encourage Savanna to go with her brothers.

Then, Savanna paused, turned towards me and proclaimed:

“I am going with them Dad. Okay?”

Three Years Later

Posted on December 10, 2014 by kenlininger

If I could have a conversation with Savanna, who has ASD (Autism), and she could magically understand things the way we understand them, just for this conversation, it might sound something like this:

Me: Savanna, you can play with all the toys in the bins, not just dump them out and throw them.

Savanna: What do you mean, the toys in the bins are not just for dumping on the floor?

Me: (Silently operating a 6-12 month random baby toy in front of her, for the millionth time…)

Savanna: Oh, I see! Can I try?

Me: Savanna, not every hole and fabric loop is for inserting your finger. But it is okay if you do.

Savanna: Daddy, I wish I could stop doing that, but I just can’t.

Me: Savanna, the words I say aren’t just weird noises, they actually have meaning. They can even be put together to form what we call sentences that convey thoughts, feelings, instructions, etc.

Savanna: Oh, I just thought you just like to hear yourself make these noises.

Me: Savanna, the food we serve you at the dinner table is actually for eating, not throwing.

Savanna: Oh. Why didn’t you tell me? Maybe I will try to eat some of these things. Daddy, how come the other kids throw the food too?

Me: Well, … its complicated….

Savanna: Daddy, you mean it is difficult to do your daily tasks when I insist that you hold me all the time? You say your back hurts, why didn’t you tell me?

Me: Savanna, I tell you this everyday.

Savanna: Oh? I never understood that before.

Me: I know.

Savanna: Daddy, why do you get so excited when I put a square shape into a square hole? It’s not that big of deal you know.

Me: Well, I think it is really great and I was actually trying to get you to do it again by showing positive praise.

Savanna: Oh? Sorry, I just didn’t want to do it again.

—————————————–

Savanna’s (special needs) Journey formally began December 19th, 2011 when she was diagnosed with a seizure disorder. Her disorder took away her normal life by arresting development in every way. A symptom of an abnormality in her brain, her disorder proved medically refractory. At 18 months old, she underwent a left TPO resection (removal of ~70% of the left hemisphere of her brain) to mechanically control the seizures, which it has done. It has given her a second chance at life; her best chance. Three years later, here we sit.

I find my situation surreal today. But it is very real. Three years after it all began, I administered the final dose of her last medication. What does the future hold for Savanna with regard to seizures? No one knows for certain. She is nearly 21 months seizure free and not on medication, indicative of a long period of control in her future.

Three years later, I find myself learning how to teach in a whole new way. I never thought I would know so much about physical therapy, occupational therapy, speech therapy, and ABA. She is 39 months old, functioning at about a 2, maybe 2.5 year old level, far less with regard to expressive speech. This sounds not so great, but my heart is filled with joy! She makes strides everyday.

The power of prayer and His word have led us to this point. We made faith-based, selfless decisions and accepted the risks and consequences in search of the best chance for Savanna to thrive. God was holding our hands and leading us even when we couldn’t understand the path or the advice clearly.

While she is now considered “normal” by many, Savanna’s brain development is different from a typical child. The way different parts of the brain work together is possibly different. These differences are difficult to measure, as is the effect of these differences on her ultimate outcome.

Yes she is “smart”! She is learning in her own way, on her own schedule.

She is learning to speak! It has taken nearly 2 years to get her to appropriately say simple words like Yes and No. She loves the power in the word no, and it has become her standard response to a question before reconsidering then following her “no”…”yes”. She has a mixed receptive/expressive speech disorder that when coupled with her cognitive delays makes communication very difficult at times.

I remember when Tristan, our oldest, was about 1 year old. We would drive around and he would say “bus” when he saw a bus of any kind. It was a very short time until he understood “yellow school bus”. Savanna just started to say “bus” in the car when she sees one. And often times, she only says “yewow (yellow)”. She knows the golden arches well, and says “pway pwace” every time (unless we pass it on her blind side). It is very reassuring feeling as her parent to hear this, as it means to me, she is learning.

I sat down to write this long-overdue post, and realized so much life had been lived since the last post. Maria and her daughter Luna visited from Norway for three months while they sought treatment for Luna’s epilepsy. While they were here, my mind just paused. Every thing just kind of slipped away and it has taken some time to remember all that transpired. A few highlights…

She and Austin celebrated turning 3 recently. On their birthday, Savanna decided to take us for a walk. She took each of our hands and proceeded to pull us along. Rebecca and I were beside ourselves, as she had not ever done anything like that. She said “Hi” to the camera when prompted. It was amazing.

She really enjoyed being part of making the cakes. She cracked her own eggs with very little help. It just warms my heart seeing her understand opening a wrapped gift, not a simple concept I have learned. Turning three meant she “graduated” ECI. And should we continue with publicly funded help, it transfers to the public school system. Her awareness of and participation in her environment is so dramatically different, it is difficult to compare to one year ago.

Celebrating Halloween this year was a little different for her. She participated, a little. But the experience was bit overwhelming, and she is always exhausted at the end of the week from the intense ABA programming.

We went to the Second Annual Pediatric Epilepsy patient/caregiver reunion. She was much more active this time. Her neurosurgeon helped her put her shoes back on after exiting the bounce house. How cool is that? I think he was a bit amazed how well she is doing, maybe not. Definitely, it reinforced the decisions made in her case. Some pictures and a link to a youtube video made by the hospital (I have short spot in it…)

Link to CMHH video of the 2nd annual pediatric epilepsy reunion.

We supported Maria through Luna’s surgery and visited Maria in the hospital a day when Savanna’s school was closed. Savanna walked all the way into the CMHH pediatric day surgery waiting area from garage 5. She has never done that; I had to take a picture.

We went to Galveston beach at the end of October, and she loved the water. It was still warm, and quite clear this day. She enjoyed the waves, noticed the kites flying, and was interested in “helping” build a sand castle. We love Houston!

She enjoyed Brandon’s birthday at Chuck-E-Cheese, especially the large indoor play structure. We almost couldn’t get her out of that thing!

These activities have all been more fun (for her and us) since starting ABA. Her expressive language development has exploded. She talks to us now. In general, she can express her feelings in words. I admit, we don’t always understand her approximations, but its a start right? But for sure, she wants to talk; she can talk!

She has many words now, when just a few months ago she had none, no fault of the speech therapy she received for 24 months. She wasn’t ready then, simply put. The therapists always said the information is going “in” and one day it will all come “out” in words. They were right.

Rebecca recounts reading the ABA plan with Savanna’s “6 month goals” before she started ABA. There were goals like “say 20 single syllable simple words” and “make 5 animal noises”. She was scared that might not be possible in just 6 months time. A miraculous 2 and 1/2 weeks later, Savanna was talking! She’s blown past her 6 month goals, and we are convinced that she will be able to do anything she decides she wants to be able to do. Amazing!

She puts 2-4 words together now appropriately without prompts. She is able to parrot many words we say, even if she doesn’t understand them. She struggles with certain phonetic sounds, such as the “k” sound, like in the word bike. Her approximation isn’t even close on this one. The speech therapist notices this and feels she will get it, but it is just not happening as quickly as the other sounds.

We believe the ABA has helped dissipate her OCD behaviors and it has certainly smoothed transitions between activities and people. We are more cautious now of situations that can derail a “good mood.” And during ABA (40 hours a week) she has 100% 1:1 supervision, which helps redirect her when she starts such behavior.

Sometimes we exploit the OCD behaviors at home, for example if she doesn’t want to get dressed. You can almost always find a top or dress with a bow on it, (with a fabric loop), show her the loop with your finger in it, and she will usually be okay with wearing that outfit. I am sure some out there would say this is a bad idea. At this point, I am picking my battles.

Sometimes, this happens…

Suddenly she was very upset! What happened? What was wrong! She demanded I hold her – or else meltdown. I went about my work (holding her) which is usually enough.

She refused to be happy.

She refused to use words.

She cried, then she screamed.

She was a snotty mess. I didn’t know what was wrong.

Finally, I figured out the pantry door was open and the light was on. This bothered her terribly, but she did not want to go take care of it herself for some reason. So, 15 minutes of complete breakdown, for what? I don’t know.

And, that’s the point, sometimes we just don’t know what is going on in her head.

She does eat without throwing (too much) these days, though her diet remains severely self-limited. If you serve her fruit (except watermelon), she will protest, period. If you are adamant she try it, you should be aware of imminent flying food. I guess this is somewhat normal?

Oh those shape sorters. She understands shape sorter toys these days. But, conceptually does not understand shapes via their names.

These days, we work more on color matching. We sort 2D and 3D objects, matching like items. We work on letter and number identification. All of these tasks start simple, with organized aligned rows of items. But the goal is for Savanna to sort/match items from a random unorganized pile, with only minimal prompts. She has done so well, so quickly, we now work on puzzles too – a much more complex challenge.

Her fine motor skills increase daily it seems. She can thread a very small string though really small beads, or holes in a board. She can cut paper with scissors with some help and prompting. (wow! right?)

She can randomly draw with crayons/markers for a couple of minutes. If you prompt enough, she can make horizontal, vertical lines, and circles.

If the other kids want to color, she too is interested. I set up a space for her on the table, but she usually loses interest quickly. This situation is disappointing and frustrating to watch.

A character trait you cannot teach: Desire to Independently Learn. Yep, she has that one!

It is glorious! It is almost to a fault though as she refuses hand-over-hand assistance.

She has the ability to sit and focus for a long time with a therapist or with us as a parent. But make no mistake, it is very hands on. You have to be right there to keep her on track. The minute you think you can step away, well….

ABA has indicated she is ready for potty training. They don’t want to wait since she has exhibited so much interest in using the bathroom. We have seen this at home too, and have agreed to work with the ABA center to develop a routing for Savanna. We are excited about this addition to her routine.

She can play with her brothers for longer periods of time (without me!!) on a somewhat regular basis. She will do this when the activity is something she prefers. She LOVES the trampoline and the swing set.

She loves her platform swing too, and this has become a staple in her sensory diet – every day. Not sure how our annual trip back to the VA and KY (where this won’t be available freely or otherwise) will unfold without this resource.

She can jump now! That’s right, leave the ground with both feet at the same time (and land appropriately)! I know it sounds trivial, but this is very difficult with children with proprioceptive deficits or dysfunction.

Austin and Savanna play the “rib-bit” frog jumping game sometimes. I think it is their own language, lol. And she jumps! The trampoline is very helpful for developing her leg and core muscles. We also use the Sure Step SMO braces to help correct the pronation in her feet. A recent gait analysis showed significant pronation, poor symmetry, and wide gait indicative of low balance and tone in her core.

The scientific evidence shows we need to work diligently at correcting her gait before the age of 7, after which correction is more difficult.

She loves to get in the middle of the action with the boys. When she is in a good mood, she is right there with them. She is often the first one hurt and crying. I generally push her back “into the octagon” and gently give the boys some additional operating parameters. A pillow fight for example, is a great way to experience a lot of heavy sensory input.

Here is a video clip of her swinging. A few months ago, she could barely push the swing around and still hang on. She is a bit tired here, but manages quite well. Important to note is that she understands to get near the center of the platform to reduce the centrifugal force from spinning. It is there she can comfortably sit and eat, or whatever (notice the chips sitting in the center). She loves her swing!

This next clip is hilarious. A good use of the physio ball (not found in the instructions!) It builds leg and foot strength, increases core strength, and increases balance and spatial awareness, all with a little fun. The amount of input from the adult greatly changes the amount of input from the child. You can plainly see the differences between the Austin and Savanna here. The motor planning is happening for both, but the results with regard to timing, strength, and overall execution are vastly different. Still, she has come so far! And I am proud!

Once again, they conspired, as they usually do on a rare quiet Sunday afternoon. We were busy cleaning around the house like a bumble bees and suddenly the eerie silence is softly broken by intense laughter from outside? Uh-oh. They snatched the physio ball from the official place of storage, and managed to get it on the trampoline. Yeah, that’s right, as if the trampoline itself wasn’t enough.

I would like to say “Thank you” to all those who have helped us with Savanna’s care. Without your input, your guidance, and your wisdom, Savanna would not be where she is today.

Dr. Gretchen Von Allmen, Dr. Mary Zupance, Dr. Nitin Tandon, Tammi Rainwater with MHMRA, George Michel with MHMRA, Nikki Dupont with Reach Healthcare TCG, Dana and Jennifer at The Speech Emporium in Cypress, Dr. Allison Arthur with TCPA, and all the therapists at Tangible Difference Learning Center in Katy. To our parents and family, Thank You for supporting us.

Thank you for your interest in helping Savanna; helping us as a family. We greatly appreciate it.

Have a Blessed Christmas,

-Liningers

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

Savanna's Journey

Infantile Spasms. Partial Epilepsy. Surgical Treatment. ASD.

Tag Archives: ABA Therapy

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