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,
Truly amazing! I love reading about her progress and your incredible parenting. 🙂
Thank you for reading and responding! I hope all is well.
We will talk soon!
Love getting to read really detailed updates like this. As a parent whose child is 5 months post-op I “get” how huge every single accomplishment that you mentioned is. While I know there are still many hard times, I am so thankful that you guys are getting to have those “overwhelmed with joy” moments. I’m curious though, Dr. Chugani told us that Abby would never be allowed to ride a roller coaster or jump on a trampoline after surgery. While I do understand that there is a huge difference between full blown jumping on a trampoline and letting a 3 yo that is barely jumping play on one- is this something that has ever been discussed in her case? I’m curious because I don’t think I’ve ever heard anyone mention that limitation before we went in for surgery and I don’t think I’ve ever heard anyone else talk about it in regards to their kiddos.
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Yes, I have come to realize so many like us read this, they really want to know as much as possible. And I find its a balancing act between not enough detail and too much detail. I am glad you like it, and I pray it helps families like yours. If nothing else, knowing that you are not alone in this journey can help.
As far as the trampoline and roller coaster, these things were never mentioned. We were told to treat like a normal kid as much as possible. Obviously no one wants to see any child hit the head too hard, but these thing just happen sometimes. Savanna had a full resection, not disconnection, so her cortex is completely missing, only CSF remains. Even still, the doctors didn’t seem to be concerned at all with the bouncing or rough play. I will inquire and see what they say.
Thanks for reading and responding. Your kind words mean a lot.
(Is this the Megan in the Brain Parents FB group by chance?)
Yes, that’s me, same Megan. My daughter had a complete resection as well.
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Awesome post, as usual, Ken…thanks for the update. I can’t wait to hang out with you and your family during the holidays!
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We will see you soon!
I am a Graduate Student at Rochester Institute of Technology getting my Master’s degree in Industrial Design and I’ve just found your blog. I’m working on my graduate thesis right now and I’m trying to find a way that design can have a positive impact on children with low and high muscle tone. I really need some input from parents of children with abnormal muscle tone and have put together a quick survey to take. If you wouldn’t mind taking a look at it and possibly sending it along to anyone you know who might be of help I would appreciate it more than you know. I would love to give you more information on my project if you’re interested! The link to the survey is: https://www.surveymonkey.com/s/T5B7NSV.
http://lianabeer.wordpress.com (my blog tracks my design process up until now if you would like to see what I have done so far)
Was she diagnosed autistic post seizure freedom?
This is a very powerful journal. I appreciate you sharing.
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She was diagnosed after the second surgery. I noticed it at about the 6 month post op time frame. There is a blog post eluding to this dx. Most likely it was always there, just not seen until this point. Uncontrolled epilepsy can mask a lot.
Thank you for your kind words. I put a lot of effort into this blog and am inspired when others find it moving or even a bit informative.
Have a great New Year Allison,
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