Special needs dad blog: the Gort family

1.26.2012

How lowering my expectations made me a better dad

Please take a moment to read my latest post on Hopeful Parents.

I'm always finding ways to improve and learn new lessons, and as the parent of two special needs children, expectations can be very tricky.

You have to have some, but not too much. Otherwise you can become quite disappointed or worse, get into a vicious cycle. But going too far the other way and having none can also get you into trouble...

So where's the balance? Find out how I found mine by clicking here.

1.25.2012

Transition from infant to toddler

As Eliza prepares to make the leap from 'Little E' to 'Almost as Big as V,' she's quickly learning that one has to set herself apart among the gaggle of Gort girls.

She loves to watch Elmo through her new specs and finger paint, getting her artistic inspiration from the love she is surrounded with from her family.

Eliza is not only looking more and more like a two-year old but making some pretty significant gains in her therapies as well.

1.24.2012

Dealing with PTSD: how your body remembers trauma

Last week I heard a story on NPR and could totally relate it with my personal experience. The story was about how nightmares caused by post-traumatic-stress disorder (PTSD) are different from those had by others. 

While the interview was with a soldier who was in Iraq, I felt connected to this story because it doesn't matter what the cause of PTSD is, but rather the symptoms are the the same - a recorded film of events play over and over in such a real fashion that you can hardly distinguish them from reality.

As Eliza's second birthday approaches my body is recalling the events that followed her failed exchange transfusion. This memory of mind, body and heart have caught me by surprise.

I've done a lot of work personally to help me think that I had moved beyond seeing that cycle of events, but they have arrived in the format of vivid dreams while I'm sleeping and flashbacks while I'm awake.

Playing through the entire five weeks she was in the neonatal unit, I see the short version: a 30-second movie clip again and again.

I see images of her black-and-blue hands and feet because of the oxygen deprivation, the stacks of medicine pumps connected to her tiny body and the EEG equipment monitoring her for brain-swelled-induced seizures.

I see the faces of every single person we interacted with during that time, and then stop to wonder how we managed ourselves through that time without expressing our hurt, anger and emotions.

So, as I drove in my car listening to this courageous story on NPR many of the PTSD explanations rang true to my own personal experiences.

I also recalled a conversation I had with my father about when he was fighting in Vietnam. We connected like we had never done before when I was younger.

"PTSD never really goes away, you just learn to live with it," he said

"I can still hear a song and I instantly go back to those fields, my friends and the sounds of gunfire."

He was right. I can't forget it. Just when I think I can, my body abruptly reminds me that those events (via powerful images) are now a part of me. They are certainly not the kind of roommates I wish to see everyday, especially when they sneak upon me.

While it's true that the body does hold trauma, I am proof that you can work through it, beyond it and prepare for it, even when you don't see it coming.


1.23.2012

Ambition over imagination everytime

We accomplished a first-time attempt last week when we brought all three of our children to the dentist (two wheelchairs, two adults, one nurse, one Violet).

The dentist specializes in treating children with special needs and has been seeing Gwen since she was around two years old.

We were not sure how the appointment would go down, but I think we were anticipating that each girl would be called back in succession, one after the other until all were cleaned and checked.

It was a familiar scene for me, since I took over taking Gwen to her dentist about three years ago, after she would no longer cooperate for Gina. Gwen isn't always nice to her mom, even though Gina has done so much care for her, taking her to appointments much more over the years.

In fact, Gwen has preferred me at appointments so much that it used to make me feel quite guilty over the way she treated Gina, always throwing temper tantrums or preferring me. These days, my charm doesn't always work as well as it once did and she has gotten better.

But last week, when the dental hygienist called all three girls back, we all thought: are you sure you want everyone at once? This could be disastrous. If you don't gas our children, you made need to gas us if it goes badly.

As the six of us (nurse, too) paraded into a large room lined with four bright-green dental chairs - me wheeling Gwen, nursing wheeling Eliza and Gina calling Violet out of the log-cabin playhouse - it began a well-choreographed affair.

The dentist and her hygienists have always impressed me with their ability to care for Gwen and treat her like any other nine-year old. They've always managed themselves at a high level of professionalism, tolerating her crying, additional suctioning and getting her teeth cleaned.

This appointment, with all three children, was no exception.

As they led me to a station where they had moved the chair so Gwen could simply tilt back in her own, they also led Violet back to a private room while Gina stayed with Eliza and the nurse.

Violet was such a good patient, as if all of these appointments (a word she uses quite often) she's attended with her two sisters have taught her the difference between being a good and bad patient.

For only her second visit, Violet didn't need us to comfort her while she sported pink sunglasses and watched Dora the Explorer.

Meanwhile, Gina took care of Eliza as Gwen was cleaned and I made "Dad noises" and held the bite stick to keep the hygienist's fingers in tact.

When it was Eliza's turn, all hands on deck were required. While Mom held hands and arms, Eliza's nurse held her head so the professional could go to work on a quick cleaning.

As mentioned, the dentist and her staff were so gentle, understanding and efficient that by the time we all walked out, we barely knew what we all had just accomplished (I give our girls' dentist and her team my highest recommendation).

In fact, just before the appointment, as we were walking into the building Gina said "We'll either go this route, with all kids every time or never attempt this again. We'll see!"

It's another example of when we work with completely competent people who are well-managed (and our children were all behaving well simultaneously - a rarity) that we can achieve success when we venture out as a family. It's these little accomplishments that help me feel a sense of normalcy and a part of the world at-large.

I think it also reflects the spirit of the House of Gort: we typically try to do things as ambitiously as we can the first time around because if we didn't our imaginations would prevent us from accomplishing anything of size or merit in our already-challenging world.




1.20.2012

Witness Carly's voice (if you haven't already)

I've been seeing this video pop around on facebook and the blogosphere but just watched it for the first time a few days ago. If you haven't watched this news clip from ABC, you've missed out on a wonderful and very powerful story.

While the story is hard-hitting for the general public, it's impact on parents who have speechless children like me is magnified to a degree that I've yet been able to put into words.

To date, it's one of the very few glimpses we parents have had into the thoughts a young adult with Austism. More importantly, it reminds us to no matter what, ever give up hope on children with disabilities.
After you watch this video, I encourage your comments and to learn more about Carly.

I admire her dad (and family) for their courage, their never-give-up attitude and sharing this important message with the world.

The dialogue that can be created around this topic is endless, and the timing couldn't be more appropriate as we witness technology increasingly improving the capabilities of individuals everywhere.

1.18.2012

Limited choices create drawbacks for children with special needs

One of the themes for me this week has been the idea of choice in services and limited resources available to parents and caregivers. Being a caregiver for a special needs child means that you get to use all kinds of services that are highly specialized.

Unless there are choices for these kinds of services, you pretty much are stuck with a particular business or organization. For example, Gwen recently was fitted for orthotics (braces to help support and position her lower legs, feet and ankles) at  Pediatric Orthotic Specialists.

Photo courtesy of Pediatric Orthotics

Four years ago she was fitted there for orthotics, but since has been getting them through school because that is where she does her standing-and-walking therapies. The only one other place to get orthotics is through Mary Free Bed Rehabilitation Hospital, which is partnered with area schools to do orthotics right onsite, working in conjunction with school therapists.

The benefit of this kind of onsite fitting is the therapist works directly with the orthotist to provide input about the student. Another benefit is that it's one less appointment parents have to deal with since they spend numerous hours running around anyway.

However, I recently learned about the drawbacks to this type of "out-of-sight, out-of-mind" scenario when the parent is not directly involved (orthotics or otherwise).

There is potential for parental communications and wishes to breakdown, and miss out on the necessary input of a child's behaviors or how the braces may best fit into his/her at-home routines. While the parent could pass notes to the school therapist or talk directly with the orthotics specialist, it can certainly increase the work for all parties involved.

Limited involvement from the parent/caregiver directly creates the potential for work to be repeated because it doesn't meet the student/patients needs . While the fitting for an orthotic is not the building-a-rocket type of appointment, anytime parents or caregivers are not directly involved it fails the person getting such tools and/or services.


If I were to look back at why we never thought about going to these appointments at school or by visiting Pediatric Orthotic Specialists, I could probably pinpoint it to the fact that we were accepting convenience over active participation in Gwen's care - a constant struggle for caregivers and parents of children with disabilities.

Because of the limited choices and resources available, I am forced to constantly make decisions to sacrifice benefits of my children (or myself). When I have limited choices in specialty type products or services, I've witnessed the tendency for people to not work or service my children as they should. I've also experienced a 'this-is-all-that-is-available-to-you-so-this-is-what-you-get' mentality.

While this is not my experience with either of the two places that offer orthotics in West Michigan or at Gwen's school (I believe these organizations are "in it" for the patient/student's benefit), I can't help but see a larger theme developing: the whole idea of limited choice creates limited service creates poor care for my kids.

As an advocate, I can't help but think about why are these choices are so limited for children with special needs (healthcare consolidation aside), and how it's affecting the care they receive. In fact, I bet you could think of times when the small, tight referral network in your community (or worse, insurance options) puts specific controls and limits on your choices in care/products.

Unless you are one the fortunate people who have an endless resource in funding or family members to assist you, then you might have little time have to think about these matters.

I feel that it's my job as a parent/caregiver to ask about my childrens' choices at appointments. Then I ask why is there are very few or none.

As part of the population who is a frequent healthcare end-user, I feel I should demand the best services and products and then ask why my children are offered limited-choice systems when others are not.





1.15.2012

Kent ISD to host technology day

Area parents and caregivers won't want to miss the opportunity to preview assistive and adaptive technology and software at the upcoming KISD "Technology Showcase Day."

The event is being held on January 24 at the Kent Conference Center located at 1633 East Beltline.

Some of the nation's leading companies and organizations in creating these important communications and assistive tools for children and adults with disabilities will be there, including:
Registration is free. RSVP Joan Meyer or if you have questions, contact Kindy Segovia.



1.12.2012

Wonder and creativity

I wonder a lot. Sometimes I wonder what my life would be like if I wasn't a caregiver.

Would my life have the same sense of drive and purpose that it does now? While I've always tried to do all things with passion, I wonder if I would have the same level of passion that I do with parenting my children if caregiving wasn't a primary part of it?

I'm considering transitioning back to the workforce. That time I spend wondering, which is mostly during Gwen's breathing treatments, has been fueling my passion for advocacy in healthcare and families with chronically ill children that I hope to use for a new career.

In the meantime, though, Gina and I are finding ourselves having to rebuild our endurance in caring for Gwen - "After Nursing Care 2.0" is how I like to refer to it.Gwen's routine is pretty intense, even for two caregivers.

While last week, I had done most of her care by myself (Gina and Violet were at her parents for the week), this week we are both going full-bore into a get-her ready-for-school-get-her-off-the-bus-get-her-cleaned-and-ready-for-bed routine. Repeat.

In addition to the care of her daily routines, which include many breathing treatments, shaking vest treatments, range of motion and stretching, medicine administrations, there are also weekly therapies, appointments and education-related responsibilities (and adventures).

Her routines and care plan are exhausting and leave very little down-time to 'play, read books and hang out' as parents (enter Violet and Eliza...). Since it's been nearly a year since we've had do to these routines we are looking at them with fresh eyes but also it doesn't take long to realize how fortunate we were to have some assistance.

As before, we've created shifts and rotate certain responsibilities on an every-other-day basis. Even though I'm not currently working right now, it leaves very little time to take care of myself or Eliza or Violet. Gina, on the other hand, is reminded of the previous seven years of Gwen's life whereas she was her full-time caregiver.

I'm pretty sure that seven years is the amount of time (if not before) that it takes for a caregiver to become burned out. While we enter into 'old hat habits' of her care, given the year off, we really need to build up our care-giving stamina all over again. The benefit is that Gwen loves that we are doing her primary routines.

Back to wondering...one of those devices from the past that we recently pulled out was the device below that we use for Tobi breathing treatments (which can take up to 30 minutes to complete).

 It's an old book lamp converted into a nebulizer cup holder for blow-by treatments. This idea came from a caregiver we hired temporarily until nursing care was setup. As you can see, it clamps onto the bed and can be adjusted perfectly for treatments (as long as Gwen cooperates, which she usually does).

Typically you are supposed to use a mask for breathing treatments but Gwen has never tolerated them. With a trach, you can simply insert the mist directly into the trachea. However, this little device has worked great for times when we really need to be as efficient as possible, such as getting her ready for school at 6 a.m.

While doing treatments one day, I started thinking what other parents might be doing and all of the innovation and creativity that we are missing out on. How do we harness this information to share with other parents?

I wonder what you might have in your tips and tricks list that could be shared right here? Anything you want to send to me, I'll write about it and give you full credit and attribution or simply leave a comment. 

1.05.2012

Top five things I've learned from trachs

To start off the new year, I thought I'd look at what last year taught me about fatherhood, caregiving and advocacy. There's no easier way for me to reflect on these things than by focusing on Gwen's trach and the lessons it's offered me during 2011.

1. Nursing care is a mixed bag
When your child gets a trach, nine times out of 10 he/she qualifies for in-home nursing care through a state medical waiver. Gwen was 'approved' for eight  hours per day, monthly. On the one hand we had to learn to trust other people (strangers) with the care we'd provided to Gwen's most of her life. While on the other hand, for the first time ever, we could objectively view her care to see how her quality of life needed to be improved (basic parenting). For example, we realized Gwen's library was outdated so we started buying her middle grade books. Reading these to her changed her mood, confidence, comprehension and relationship with us. Some of her daily routines were also improved upon by the professionals while others were not done in the same manner as we did them. The consistency of care was simply not the same as Gina and I, which grated on us, but the overall quality of care was O.K., so we learned to trade off what we could live with and live without. It would never be the same and always be different and we accepted that.

2. Cleanliness is next to homeyness
Learning to clean every single item for your child (trach or no trach) means that you can get mileage out of the limited medical supplies that your insurance 'pays for' while also keeping your child out of the hospital. By keeping a clean environment at home we not only reduced sickness and infections but also kept Gwen from picking up any infections or viruses at the hospital - the dirtiest of all places for a child with compromised immune system. With Gwen, we've learned over the years that if she's sick at home, she heals much faster than she would at 'the H.' Isn't that weird. We now own stock on Heinz vinegar because we use it to clean pretty much everything! A clean child with clean supplies being handled by clean hands equals fewer infections.

3. Supplies demand too much space
Our monthly shipment of medical supplies quadrupled (if not more) after Gwen got her trach. There is simply not enough room in 'a normal' bedroom for trach equipment. This created a storage shortage and organization nightmare in our house. Had we not had all those small little washtubs from the H that we've collected over the years and a permanent marker to label them, there's simply no way we could have managed and stored all of the supplies. The supplies were overwhelming. The care was overwhelming. The fear of all it was over the top. It's one more example of how care-plans implemented away from the home have a serious impact afterward. Yet most parents and caregivers are left without any support systems - yes, I'm still talking about storage but it's a metaphor for larger theme - to help famlies fulfill very basic needs. A trach created a basic need for more storage that didn't change even after we moved into a larger house. Crazy.

4. Trachs create fear
When Gwen got her trach, we all thought it was an emergency situation but as time went on, we had to find a way to overcome that fear. At first, the fear was that she couldn't breathe without it. After we received trach training, there was more fear instilled in us about 'emergency situations' among other things. That fear was sparked by our trust in the professionals around us because we never had to question our care (until Gwen was overdosed, our second medical error in 2010).  As we worked toward decannulation, we needed to find ways to overcome our fear of getting rid of the trach. We learned this from an ear-nose-and-throat doctor, but not before it proved to be too difficult for us to follow all of the capping trials we were doing. Gwen found her own way. She, like most children, doesn't understand adult fear. Thank goodness for that!

5. An ethical dilemma
If you read number one above then you know that when a child has a trach they can get nursing care. Many kids with trachs also have ventilators that are either used overnight or all of the time, adding much higher needs (I can only imagine) than a trach alone does. Vent-dependent patients aside, if having a trach gets you nursing care and not having a trach gets you no nursing care (Gwen no longer has nursing care in 2012) then what incentive is there to get rid of one? Parents of children with high medical needs have very little support. Working parents, single parents, babysitters, a laundry list of challenges come with this territory. Combine that stress with the fear of getting rid of trach and it's easy to see why many parents are stuck. Lastly, there should be more medical professionals asking parents and caregivers if decannulation is a consideration, but there's very little incentive for that as well. While certainly I understand that not all children can live/breathe without a trach, I bet there are more out there who are like Gwen. Nine times out of 10, I also bet that fear, lack of resources and very little support are preventing them from having greater possibilities.


While I'm looking forward to seeing what 2012 will teach me, I'm thankful for what 2011 offered.

Wishing you and yours a very happy new year!

12.26.2011

How Gwen showed us the Christmas spirit

Here's an article that I wrote for our local newspaper, the Grand Rapids Press, which ran Christmas day.

Happy Believing!