The Gort Family

Pennies for Gwenny 2012: Queen seeks her Independence

2012-02-01T06:38:00.000-05:00

One year ago many of you believed in Gwendolyn as she competed against many other fair maidens for Valentine's Day Queen at her school, Lincoln Developmental Center.

While we all know Gwen is a very beautiful and happy girl, we really had never ran a full-blown campaign to raise money before last year - and what a record-breaking fundraiser it was! Drama Queen should have been her title!

We'd love to continue the Pennies for Gwenny campaign but Gwen was not nominated to represent her class this year, and we had been considering shifting gears anyway.

Your belief in Gwen changed her. She now believes she can do anything (remember the trach she used to have?). In fact, Gwen has made so much progress in the past year that we, for the first time in nine years, are holding a Pennies for Gwenny Fundraiser to help her continue her quest toward independence.

Here's a list of Queen Gwen's 2011-12 accomplishments:

Using the toilet at school (started just last week), which is quite the big deal for a child who's been incontinent for nine years
Operating a power wheelchair trainer, driving it all the way down the hall, and is considerate of not running over others!
Taking reciprocal steps using a gate-trainer on the ground and a treadmill
Listening to chapter and young adult books either on tape or as read by her parents, as opposed to picture books
Participating in physical therapy once a week for several months: she can sit up on her own, she can go in a modified four-point (hands and knees) and do some sit-to-stand exorcises
Getting ready to start occupational therapy as well as speech therapy on a weekly basis
Trying increase the strength of her head and left arm so she can start expressing 'yes/no' decision-making skills
Using a dynamic stander that we were able to secure late last year for at-home use

We have been doing our darnedest to integrate in-patient and at-school objectives with our at-home routines when time allows, usually while we are all hanging out in the living room together in the evening.

Ultimately, this year's Pennies for Gwenny fundraiser will help us raise enough to purchase things that insurance doesn't cover: Tumble Forms equipment, special shoes for her leg orthotics, music and aquatic therapy, a basic switch for communication training or potentially an iPad.
iPads have shown some very promising results for non-verbal children and adults, and Gwen could certainly benefit from new technology.

Unfortunately we cannot offer the incentive of a tax-deduction at this time, but please know that it will truly help Gwen, not only in reaching her true potential but also increasing the quality of her life and ours.

From all of the Queens (and honorary King when allowed to be) at the House of Gort, we are geared up for a Happy Valentine's Day and a month of fundraising for Gwen. We hope that you can help the Queen on her quest toward independence.

How lowering my expectations made me a better dad

2012-01-26T17:04:00.005-05:00

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.

Transition from infant to toddler

2012-01-25T21:22:00.001-05:00

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.

Dealing with PTSD: how your body remembers trauma

2012-01-24T12:30:00.002-05:00

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.

Ambition over imagination everytime

2012-01-23T15:55:00.002-05:00

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.

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

2012-01-20T11:54:00.000-05:00

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.

Limited choices create drawbacks for children with special needs

2012-01-18T12:35:00.003-05:00

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.

Kent ISD to host technology day

2012-01-15T12:01:00.000-05:00

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.

Wonder and creativity

2012-01-12T11:48:00.001-05:00

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.

Top five things I've learned from trachs

2012-01-05T08:28:00.001-05:00

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!

How Gwen showed us the Christmas spirit

2011-12-26T07:00:00.000-05:00

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

Happy Believing!

Happy Christmas from the House of Gort 2011

2011-12-24T21:50:00.001-05:00

Gwen (with trach), Sept. 2011.

Gwendolyn without trach, Dec. 2011

Gwendolyn and Eliza Gort

Violet and Eliza Gort

Eliza, Violet and Gwendolyn Gort, North Pole 2011.

Guest commentary: why we need advocates by Thomas Bird

2011-12-22T15:13:00.002-05:00

At the most fundamental level, advocates can be consumers who speak for themselves, or they can be “stakeholders”- guardians, family members, friends or those who are familiar with the individuals, their needs and desires, and who speak on their behalf (because they may not be able to speak articulately and effectively, themselves), or as their supporters. These advocates can engage as individuals, or as informal groups that address issues locally or in a larger geographic area. They may also organize as formal organizations, some as 501(c)3 nonprofits, and often with a national base of activity and influence, some of which are supported with millions of dollars of Federal grants. Often there is a single focus which ignites and drives the early efforts, and, sometimes, this singular effort continues as the size of the group and area of influence increases; other times, the scope of issues also expands, and, with an extensive history of advocacy, the philosophic positions change so that the organization no longer reflects the values and concerns of those who started the group. This can create tension and a need for new grass-roots advocacy.

Another level of advocacy involves the role of providers in speaking to the issues faced by those whom they serve. The higher the level or degree of advocacy, combined with the status of also being a provider of services, gives rise to the tendency to think of these organizations or providers as “lobbyists” or as someone with a vested interest in maintaining a position of influence within “the system.” We must be cautious in recognizing these distinctions and in qualifying the independence of their recommendations, but we must not unfairly dismiss their valid input. The same is true when engaging with the individual stakeholders; we must not dismiss their valid input because we believe that they are not “professionals.” Often they know the consumer better than the system’s professionals.

What is to fear? If we believe in the value of consumer/stakeholder input we must first ask what exactly we mean by that. Do we consider stakeholders to be those who represent the smallest, most individual efforts at advocacy, with minimal value in their input, and are we giving equal, or even greater consideration to the largest of organized advocacy agencies? To only recognize the largest, most organized, funded and vocal is to ignore those closest to the consumers, themselves. To only recognize consumers and their individual spokespersons would be equally exclusionary. To refuse to allow participation of any group in the vital discussion, planning and decision making is unconscionable, and perhaps would reflect an attitude that state agencies and departments know best. This would also violate the principles of the state mental health code and CMS directives, in addition to being insensitive to, and dismissive of the value that consumers/stakeholders bring to the table.

A good friend had a penchant for using intentional malapropisms. One of his classics was, “You get out of people what you inspect of them.” This is an astute observation of the fact that we all need oversight and accountability in order to achieve our best potential. We are all fallible: capable of losing focus or direction, capable of ignoring or misinterpreting the needs of those whom we serve. You may remember the recent effort to restrict/eliminate guardianship. One criticism leveled against the effort was that guardians serve an important role in standing in the place of those who cannot effectively speak for themselves in defending their rights or in self-advocating for their needs and desires. The fear was that “the system" would support these efforts and effectively eliminate a vital role in the system of checks and balances. Without guardians, and without giving proper recognition to advocates of all types, we lose vital oversight and critical input.

It takes an attitude of humility and the recognition of one’s potential to err, to embrace the roles of advocates. A capable, responsible service delivery system has nothing to fear, and everything to gain by welcoming such a resource in helping to validate the successes and challenge those areas where it could do better. What are YOU afraid of?

Thomas Bird

Inspiration from poetry

2011-12-19T16:01:00.003-05:00

It would be a big, fat bold-faced lie of the worse kind if I said that I appreciated poetry before I married Gina.

Just as I am inspired by my children to write essays, blog posts and articles, I'm even more inspired by Gina, the resident poet here at the House of Gort.

Many of the poems I write are drawn from experiences directly with Gina and our children. When I first began writing poetry, I only drew from experience but eventually found ways to creatively express myself based upon my imagination alone - a true transformation Gina helped me through.

Gina recently wrote about drawing inspiration and how long poetry has been a part of her life. So, the timing of the following poem by Mark Jarman, a teacher at Vanderbilt University, about parenthood really resonated with me.

After Disappointment

To lie in your child’s bed when she is gone
Is calming as anything I know. To fall
Asleep, her books arranged above your head,
Is to admit that you have never been
So tired, so enchanted by the spell
Of your grown body. To feel small instead
Of blocking out the light, to feel alone,
Not knowing what you should or shouldn’t feel,
Is to find out, no matter what you’ve said
About the cramped escapes and obstacles
You plan and face and have to call the world,
That there remain these places, occupied
By children, yours if lucky, like the girl
Who finds you here and lies down by your side.

This poem is an important reminder for us parents of special needs children that despite our circumstances, there are these small moments in time when 'if life could just always be like this moment in time.' When everything is 'perfect' is another important component to my inspiration as a writer.

This poem is an excellent example of how brilliant writing can reach any type of parent.

This was distributed via American Life in Poetry by Ted Kooser, U.S. Poet Laureate, 2004-2006.

Opening gifts for my daughters (re-post from Hopeful Parents)

2011-12-18T09:58:00.000-05:00

As the holidays approach, I'm reminded of all of the times I've opened gifts for my oldest daughter, Gwen. It's been nine Christmases now.

With the big day right around the corner, I'm anticipating opening gifts for my youngest child just like I'd done with Gwen. She and Gwen are both children with cerebral palsy.

This means that those tiny moments when the anticipation of opening presents intersects with physically getting to open them, doesn't happen - at least in the traditional way.

When Gwen was three all of the 'toys' she received started changing from being 'play toys' to being therapeutic ones. I remember all of the age-appropriate ratings on the toy packaging stirring up reminders of the failed (albeit standard) milestones that Gwen didn't reach.

Every time I read the big white letters printed inside the even larger red starbursts, I would feel loss, even during the height and joy of the holidays. The packages read “ages three and under, ages three-plus or only for children five and above.” Each gift I opened usually meant more big blatant letters and starbursts.

Over the years, Gwen would get more three-and-under toys than I'd like to think about, many of which we still have. I've watched her younger sisters play with these toys as recently as last week, and keep replaying my memories of some of those earliest family Christmas gatherings.

At that time, I used to focus too often on aspects of loss that I was dealing with while often making Christmas time more bittersweet than it needed to be.

Once I focused more on Gwen, seeing that she loved to receive and open presents, I forgot about the age-ratings on the toy packaging, and also saw that she really didn't care that she wasn't actually opening the gifts.

Most importantly, I made the shift from letting my 'adult problems' interfere with my child's enjoyment (something I still have to constantly remind myself of).

I'm guessing that there will be times when I need to embrace my own feelings of loss. However, I do think the second time is easier with my youngest daughter – after all she is not Gwen and I am a much different person than I was in those memories.

These kinds of details, those that so many other parents and families don't get to experience, unite families like mine (and maybe yours, too). Most importantly they remind me that the holidays are about feeling connected with my children.

While this year I know I'll be opening gifts for my daughters, I wonder what you'll be doing. What are your families' non-traditional Christmas traditions for your children? Please share in the comments below.

Book review: Different Dream Parenting

2011-12-12T11:03:00.000-05:00

Book: Different Dream Parenting: a practical guide to raising a child with special needs.

Type: Non-fiction – religious, christian living, family

Author: Jolene Philo – a first-time author who's written numerous articles

Review:

Having read many books over the years geared toward parenting children, Different Dream Parenting offers a fresh perspective on some of the aspects of caregiving that can often be overlooked. For example, many new-time parents of medically fragile children want resources, and they want them quickly. Many times, they also want to find a story that's as similar to their situation as possible.This book offers those highlights to the reader.

As I read through this book, I began thinking that its author, Jolene Philo, was losing some credibility when I found out her journey with her son's medical needs were resolved. Often times, parents become lifelong caregivers for their child's complex needs. However, Philo quickly resolved my feelings, as she began taking the initiative to show us her expertise – prayers and faith – while gaining many insights from other parents of medical fragile children.

While revealing tiny windows into these parents' lives, she beautifully strings together the common threads among them, giving small dose of their realities - emotions and challenges - helping me assimilate with my own caregiving situation. Philo's experience in caregiving and in medical settings is augmented as she draws familiar stories out from other parents and families, creating a sense of a community and sharing where parents might otherwise often feel isolated, These are true strengths of book.

Different Dream Parenting is also a resourceful read because it includes many different websites, government entities and medical institutions, which give the reader the opportunity do their own research to find information that's useful for parenting. I found one of the best resources in the book is that it provides detailed explanations of the roles of medical professionals, which can be helpful for first-time parents in often stressful medical settings. While I found the definitions to be pretty standard like one can find with Google, the author didn't miss any of the critical elements and roles that these professionals provide. It should be noted that hospitals will always defined its medical professionals differently from one to another.

Similar to other books I've read about this topic, unfortunately, Philo only scratches the service of what parents really go through in parenting a special needs child. The pictures painted, whether in home, medical, church or community settings, are idealistic in nature and do not provide the sometimes horrific challenges parents face. In most cases, the people interviewed are couples and the solutions always point the reader to learn from God or churches or ministries. This provides the illusion that parents who face the hard work of being a full-time caregiver, parent and advocate must do in the face of a strong Christian faith, which excludes those who do not subscribe to this religion.

When I was asked to read this book because of my nine years of experience as a father of a children with special needs and a blogger, I was not asked about my faith or told this book was for “Christian parents” but clearly it is. It's unfortunate that the publicist didn't do her homework or ask me if this book would be of interest but I gave my word to read it. My guess is that it was assumed that I would be “praising” the book for its content because of my geographic location.

Clearly, the prayers included, the church components and other aspects exclude me from the demographic of this book. However, I read through it and, despite the many Christian philosophies and prayers, still found very useful information therein. I still do not belief in the ideal-isms this book promotes. Too often, people point to religion and say things like “Oh, God made your child that way for a reason.” or “God never gives you more than you can handle” but these statements have never resonated with me.

Why, it's just such an easy answer for us to point to religion as the cause and the solution to help us feel better. We are parents put into extraordinary roles. We have to acknowledge all aspects of our feelings, our fears and our findings, the suckiness, the reality, the emotions and the facts, but then we have to keep moving, because that's what all parents do. They do their best and they keep moving. Sometimes faith helps them move. I understand that. My own faith certainly helps me find light, but it's just that: "my own."

What about parents who don't subscribe to Christianity, or cannot participate in Special Olympics or engage in a community that is not fully accessible to people with disabilities? What about the struggles of single parents? It's impossible to create a book that caters to everyone, and while this book doesn't aim to do that, I believe that church or a religion cannot be all things to all parents of special needs children, as this author appears to believe.

While I feel there were many components of Different Dream Parenting that did resonate with me, there were too many statements that did not. In all honesty, I cannot give my highest recommendation to read this book, unless of course, you are looking for a book with a decent list of resources, some ideas and prayers about how God can help you, and you want a very skewed view of the reality of lives of caregivers who are doing extraordinary parenting - opposed to wanting to learn all of the ups and downs they have, just like any other family does.

With so many parents writing in the blogosphere these days, we can easily access all aspects of parenting special needs. More importantly we can learn all of the angles of reality, which seems more beneficial to me, my learning and improving how I father my three wonderful girls.

Disclaimer: I am in no way pushing the sales of this book or getting paid to do so. My goal was to read the book and provide my opinions as to whether it spoke to me as a parent of special needs children. I believe I have fulfilled that request in the most honest way possible. If you wish to learn to read more about Jolene Philo, you can hop over to her blog here.

Odds of hitting a grand slam

2011-12-10T13:40:00.001-05:00

This weekend was supposed to be a man-weekend. Three guys. Three backpacks. Three degrees (O.K., maybe 13 degrees). In October, I began planning a winter-backpacking trip with two of my best friends.

I remember telling Gina that I was overdue for a break from our hectic lives. Nature typically gives me respite and peace to return as a whole, supportive person. I was looking forward to the trip for more than a month, getting my friends just as excited as we prepared to sleep on the frozen tundra at our favorite destination along the shores of Lake Michigan.

As a result of my plans, Gina arranged for 24-hour care for Eliza - in conjunction with Gwen - for two nights, two days. She wanted to do something special with Violet during my short trip. The timing was excellent because we had just returned from last week's craziness of “Gwen's Trach Release Party.”

Violet was bounced around from daycare to sitter to a friend's house, a constant when we have medical emergencies or appointments. Gina would take Violet to the Double JJ Ranch while I went with my friends – a full-proof plan to restore some balance before we headed into the holidays.

The world, however, had something much different in mind for us. Within several hours of leaving, we received the news that our care we scheduled would not be there for us. In addition, we learned that 24-hour support would no longer be available for Eliza anytime Gina and I needed to be at U of M with Gwen (we have a sleep study scheduled for Monday night).

If Eliza were a neurotypical child like Violet then arranging care or providing that care would be SO much easier. Her injury makes such an impact on every single family member but...this world we live in is one that has so many variables and dependents upon others to be there, to be doing the right thing to be supporting our tiny but highly important needs.

But that control is not ours. Rather its by people who view us as numbers as opposed to a dynamic, semi-functioning family where two of our three children our severely, multiply impaired, a family violated by human-errors and egos over and over again.

After Gina and I broke down emotionally and after trying our best to change the world from stopping us, we had to quit resisting. We decided that Gwen would stay home with the scheduled caregivers and that we'd take Eliza and Violet to the Double JJ ranch. I planned to stay there one night before camping the remainder of the weekend.

At the eleventh hour, I also canceled my backpacking trip to stay with Gina, Violet and Eliza. Instead having one of Violet's friends and his mom join Gina, it would become a sister-bonding experience for Violet and Eliza – a silver lining that we can always be find when love is eminent and at center.

Violet even slept in the same bed as Eliza both nights. When I woke up early this morning I found Violet snuggled closely to her sister, a priceless picture that I will always remember and something that has never happened until this today.
As I reflect on how this event, like so many other events since Eliza came into our lives, we continue to roll with so many unknowns and curve-balls unrelated to our children's health.

It's funny how conversations come into our lives a just the right time. This re-routed weekend can best be summarized using a conversation I had with a good friend earlier this week.

She said, “Tim, you and Gina, had all of these steadfast, roll-with-the-punches-type qualities way before all of this very bad stuff happened to you two. Before Gwen's sister passed away. Before the Hospital injured Eliza. Before you two were even married.”

She was right. She was talking about character qualities people can never take away from us.

So, great world, does it matter what happens next? I'm not threatening you, world. In fact, I don't want to test you because I certainly understand how powerful you are but let me tell you this.

In our world, where Gina, Gwendolyn, Violet and Eliza and I all have each other, your curve balls are starting to look a bit like any other fast pitch. Eventually we'll hit one out of the park with all of us on the bases – a grand slam that not even a relief pitcher could have prevented.

" You better believe that the odds are in our favor, partner!"

Say it ain't so a-woah-a-woah

2011-12-05T11:55:00.001-05:00

One year ago, today, Gwendolyn had a tracheotomy.

It's an anniversary date I never planned on commemorating, especially given the details leading up to her surgery.

Honestly, what kind of parents would celebrate one year with a trach? Well, certainly not us. And, not Gwen either. She knew that one year was too long, so she decided that it needed to go while on the bus last Thursday!

After nurses at school couldn't reinsert it, after Gina nor I could reinsert it and after the ENTs at U of M emergency room couldn't reinsert it, we all quit resisting Gwen's repeated requests.

It's tough to calculate how many times her trach has popped out or the exact number of times she's pulled it out, but let's just say a sh** ton!

But that doesn't really matter any more. After being observed for several days without any destats we came home Friday night - trachless.

We are so thankful that our make-shift support system, complete with overnight nursing care for Eliza, impromptu sitters for Violet and a great set of medical professionals who made this situation much easier than it could have been.

We had just come up with a plan for decannulation last Tuesday while at a regularly scheduled appointment with our ENT. But Gwen decided that it was not soon enough.

Amazingly, we made four 240-mile round-trips from G.R. to Ann Arbor in just five days. After going back with Gwen on Thursday, I drove home to run errands on Friday, collect a few items we had forgotten and ensured that our ship was smooth sailing. I then returned that afternoon to Gina and Gwen.

Meanwhile, Gina was rocking it out at the Mott, taking care of Gwen, advocating to go home and taking charge like a sleep-deprived bear late for hibernation. We also didn't really want to participate in their big move to their new children's hospital, which was scheduled for yesterday. It's so crazy to think about these events.

Less than one year ago after her tracheotomy, Gwen was stuck in the hospital through Christmas and released just before Helen Devos Children's Hospital open the doors to its new facility. I can recall exactly how strange I felt while I witnessed the donor parties - formal events with valet parking, guests arriving in black tuxedos and plenty of hors d'oeuvres to go around.

Only less than one year later, Gwen is trachless at University of Michigan Mott Children's Hospital as they are getting ready to move (and birth) patients into a brand new building. If Gina had agreed to stay for several more days, which they were pushing for, there we'd all be moving right along with Gwen into that new facility.

What a strange, familiar and bizarre world we live in. Think about the craziness of all of this...(it's not fiction)

While certainly, every nurse who talked with us could have been focused on the new hospital, the move and the big transition, they were not. They were 100 percent focused on us and Gwen.

In fact, everyone excited that Gwen gave herself an early Christmas gift, nurses who were complete strangers, would stop in and say "Gwen, you just gave yourself a great Christmas present. Good job, girly!"

What a difference life is when people put people first, as opposed to medicine.

Merry Christmas to Gwen! (Merry Christmas to Weezer for giving me an idea for a headline.)

Opening gifts for my daughters

2011-11-29T19:59:00.001-05:00

Still doing a bit of recovering from our Thanksgiving trip to the U.P. Hope you, too, enjoyed your break. Here's the latest piece I wrote for Hopeful Parents. Enjoy!

Read Opening gifts for my daughters here.

Learning silent language

2011-11-14T10:27:00.001-05:00

A recent long afternoon of ophthalmology appointments in Ann Arbor with Gwen and Eliza reminds me of what I love and hate about teaching hospitals.

After hours with a fellow and more waiting after pupil dilations, we actually saw the 'real ophthalmologist' for only 20 minutes of that time. Embracing waiting rooms is a tough job. Non-doctors can also be exhausting, especially for patients and caregivers doing 'the teaching' part.

What I love about them is that we continue to really enjoy the treatment, approach and philosophy at Mott. We can actually e-mail our doctors and medical professionals – and they respond. Talk about modern medicine. What! What!

The benefit of two-hour drives there and back is that they give me plenty of time to reflect: how the events in my life have quickly changed my course.

It seems that not too long ago I was sitting in a cubicle. I wrote semi-passionately about money (foreign exchange). I was a dedicated individual and 'a team player.' I had socialization outside of my home.

I've realized it was where I was suppose to be at 'that moment in time.' Now I am where I need to be – at home, supporting, listening, advocating, writing, learning, healing and planning.

Those almost-nine years of my life are over. I still have a social life. It's not better. It's not worse. It's different. I get more choices, and I like that.

Things I don't get to choose are when my kids are sick. For example, Gwen was home sick with a virus all last week. And I just can't imagine what that week would have been like for Gina if I was gone eight-plus hours a day.

Gwen is a daddy's girl. I'm so glad that I don't have the guilt associated with leaving her when she is sick, as I used to have to do. While Gina is Gwen's best nurse, I'm thankful that I can provide her with happiness when she is ill.

Funny thing about Gwen is that all I have to do is be present, and most of the time she is happy. Being present in Gwen's life more than ever before has been both positive and humbling for me lately.

On the one hand, I can take her to therapy, bring those therapies home and then share that knowledge with some of our nurses and Gina. I get to witness Gwen being so capable and smart, which I took for granted before.

The humbling part is that being with her more allows me to witness her demonstrating her abilities and intelligence. I can clearly see how it must be so frustrating for her to not have the ability to communicate – other than in her subtle eye movements and body language that very few people know.

Gwen on her first day of school - fall 2011

I'm thankful for being one of those who do. In her big brown eyes and waving long lashes, I see a bright, talented child who loves books appropriate for her age, has emotional, preteen needs and wants nothing more than to be included in all conversations happening around her (she's nosy like me).

What's more is that I see this same type of intelligence rearing its head in Eliza's evolving world, too. She stares so intently at me sometimes that I know she is formulating opinions and other commentary, but I can only infer what's happening inside.

This type of parenting humbles me. As I listen, see and interpret, I realize we are abstractly communicating without the muddling of words or language. We have non-language.

If you want to learn this kind of silent language, I recommend paying more attention to pauses after commas, sighs in between sentences and thick silence at the beginning or ending of stories.

Parents accused going too far in advocating for child

2011-11-11T09:04:00.001-05:00

This story brings up an interesting debate between hospitals and parents when it comes to advocating for a child.

As an advocate, I've found myself in several situations going against recommendations and even having my character questioned by staff as to what type of parent I am. I believe in making informed decisions as a parent, which should never be questioned by others.

While I'm sure there are more facts to this story than what is fully stated, I think we can all learn from this story and think more about what's at stake here.

How would you handle this situation and what are your ideas for implementing change?

Parents fight to stop cancer treatment: woodtv.com

Resources:
Hope For Jacob

Palliative caregiving explained

2011-11-10T09:44:00.001-05:00

According to the University of Michigan, palliative care is a kind of care for people who have serious illnesses or other chronically and terminally ill diseases.

Traditionally, it was designed around hospice or end-of-life care but in more recent years, palliative care has started being delivered to children like Gwen and Eliza, kids with life-long illnesses.

It is different from care to cure illness (called curative treatment). Instead, palliative care focuses on improving quality of life—not just in a child's body, but also in their mind and spirit.

Palliative care for children like ours is often combined with other treatments. There have been times when I've found my self reflecting on the fact that from the time we are young we go to two different doctors to take care of ourselves.

For example, if you have psychological, mental or other neurological challenges, you often go to a shrink, which can have a serious social stigma. With our body, we go to a doctor for our physiological needs.

It's taken me a few years of facing quite a number of challenges to fully appreciate and understand when it comes to caring for myself and my children these are intertwined.

Just as my muscles, bones and nerves are part of a larger system, the mind, body and spirit work together each day to create the 'whole me.' My children are no different.

I've learned that when I don't take care of myself mentally – doing the things that my mind enjoys – then my body usually doesn't follow. Having witnessed other people face trauma and focus solely on physical activities to help handle trauma's psychological side effects, I haven't seen the benefits of taking that route (without including the mind, too).

I've seen examples like this in Gwen's life. She loves to socialize. When she is able to participate in social situations (whether they be at school, home or the mall), her happiness and health meters are full. My guess is that for Gwen, socialization makes her feel more like society than any other activity in her life, so that is an emphasis as part of her therapies.

It's as if we knew that quality of life (i.e., palliative care) was a natural part of our focus on acknowledging her important connections between her soul, body and mind.

In many ways this is almost conflicting with science and medicine. It'll be interesting see how we are advised, since we've been pretty much implementing a palliative-care approach to our care since Gwen was three.

As many larger hospitals and institutions embrace all-encompassing care programs like palliative care, I hope that my interest and optimism continues. Now, only if insurance companies would catch up to other forms of alternative care approaches, I'd truly have a reason to be optimistic.

What are your thoughts about quality of life versus making decisions soley based on science?

Resources:
- Pediatric Palliative and Comfort Care Team (Cincinnati Children's)
- Children's Palliative Care Community
- National Hospice and Palliative Care Organization

Caregiving: always learning

2011-11-09T17:06:00.000-05:00

It can be overwhelming to me when I think about what we've learned in the nine years Gina and I have been parents.

When we were young parents, and very inexperienced with advocating in medical settings, it was easy to listen, ask very little questions and simply do as we were told by whomever.

When we had questions for doctors we'd go on keeping them quiet or just among each other because we felt that our emotions were interfering with the facts. Once our emotions settled down, we'd usually carry on business as usual - sometimes with uneasiness, sometimes without any hesitations.

But at some point, we became questioners of every aspect of caregiving. I think it may have been after numerous appointments and having come term fully with the fact that we were going to be raising a significantly different child than we once dreamed.

We then began to question, not so much the medical professionals but more facts in conjunction with Gwen's emotional well-being, even our own logic at times. Thinking less about Gwen's physiology and more about her emotionally helped us question every decision, every avenue and all pros and cons of a particular procedure.

We began to weigh every single option against Gwen's quality of life. What I didn't realize at that time was that we were implementing a palliative care routine as part of our decision-making process.

We are getting ready to meet with a palliative care specialist soon so over the next several posts, I want to explore this philosophy to care and look more at how we've implemented it, unknowingly over the years.

Read more about palliative care in tomorrow's post “Palliative caregiving explained”

The benfits of case managers

2011-11-03T16:49:00.002-04:00

In part of a series on special needs resources, I'm offering ideas and advice based on people, organizations and tips that have truly made my life easier in raising our three girls, two of whom have cerebral palsy.

Today while I was cleaning my 'inbox' I created a case management folder. After I officially quit my corporate job in April of this year, I started taking case management for Eliza and Gwen quite seriously.

Gina and I are pretty much 'case managers' 15-30 hours per week for our girls, depending on the week.

This usually comprises the following (x2) scheduling appointments, scheduling nurses, constant re-scheduling, ordering meds, getting scripts, ordering monthly medical supplies, following up on equipment orders, checking on insurance issues, picking up drugs, lots of paperwork and many other regular and unsuspected tasks.

There is way more involved than you could ever imagine, unless you've been there.

So, the idea of being a case manager in addition to being a parent and caregiver is something that I wanted explore in today's post.

We have many case managers outside of Gina and me who support this effort of raising two children with cerebral palsy.

An important component often not leveraged (or asked about) is case management and how this position – whether it be medical, insurance or other – is a valuable resource for families of children with special needs.

We have been very lucky in our early days of raising Gwendolyn because we were assigned a case manager right from the start at our pediatrician's office. Our lives would not have been the same without this person.

She has has been responsible for numerous referrals, much-needed prescriptions (including often-dreaded-and-forgotten-about-last-minute refills) and ensuring that our care plan was executed after we left the office.

In addition to being an extension to our care plan, she helped us learn how to be medical advocates while offering us her thorough understanding of the complex inter-workings of the “healthcare system,” which was new to us right after Gwen was born.

According to Case Managers Society of America, “case managers help provide an array of services to help individuals and families cope with complicated situations in the most effective way possible, thereby achieving a better quality of life.”

Better quality of life to us means, time, knowledge and empowerment to make sound decisions. But case managers mean so much more to a family who has layers of complicated situations, which is usually topped off with more complicated situations.

For example, after Eliza was born we became experienced with other types of case managers, who helped us see the different roles and benefits for our family.

Case managers can work for nursing care companies, insurance companies (think auto accidents or other liabilities), health departments and hospitals or other medical institutions. It's important to understand who pays a case manager and what their ultimate responsibility is.

With our nursing care company that we use for Eliza (and Gwen after her trach placement), our case manager not only provides everything mentioned above, but also acts as a conduit between our family, insurance company and the nursing care staff.

In addition, she may help ensure medications from discharge orders or specialist appointments match up, especially important when there are no changes should dosages get transcribed wrong (which can definitely happen).

For our case, she basically offers another professional set of eyes, ears, knowledge, etc. in helping us think through the care plan and that its properly communicated to nursing staff.

We also have a case manager who works with us at our local health department, acting as a liaison between the programs, resources and insurance coverage that is offered through state government, which is designed specifically for children with special health care needs.

You can only imagine how difficult our lives would be navigating state programs without the help of a case manager.

At first, our experience with our very first health department case manager was not that great because of the lack of communication, for which we were partially to be blamed. If she didn't correspond with us, we didn't call her.

We probably could have been better about that earlier. We didn't learn about the programs that we were qualified for, types of assistance or anything, and pretty much had to do all of the work (the forms were quite complicated).

However, about two years ago, we received a new case manager and our experience has been consistent with that of our other experiences. She has streamlined our communication, helped us make sense of complicated systems and processes and eased the burden of dealing with complex government-funded healthcare in our state.

As Gina and I have grown into case managers ourselves, we definitely see the benefits they can offer families. If you don't have one for your family, ask your pediatrician, your health department or your nursing care company.

While I hate to knock social workers, we've always had better luck with case managers. They have provided more value to our family, hands down.

Student disability video

2011-11-02T10:06:00.000-04:00

Check out this interesting video made by students at the University of Illinois.