A Published Essay in the Dads of DisAbility Project

Posted on April 15, 2014 by kenlininger

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…

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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.

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.)