Category Archives: Tracheostomy
The last third of the year can become unenjoyably busy for our family very easily, with ten family birthdays and our anniversary sprinkled in among the bustle of Halloween, Thanksgiving and Christmas. So in 2016 Greg and I resolved to designate one day from each weekend in October, November and December as an “at home only” day: no outings, no plans, no chores and no to-do list. We called it a family Sabbath, although we first instituted this for practical reasons and our own comfort rather than as an effort to obey the religious guidelines of Sabbath keeping.
When we first decided to implement this in October, I breathed a sigh of relief, knowing that we would benefit so much from the rest this boundary around our schedule would afford us. There was one problem though. The only date that worked well for Rowan and June’s joint birthday party fell on the same weekend that the huge Lego tour would be in town. The Lego event that Rowan has been asking to return to since he saw it the last time it came to town two years ago. The one I had been excited to take the kids to for months.
We looked at three different scenarios: attending an abbreviated weeknight Lego session, packing the Lego fest in on the same day as our at-home birthday party, or breaking our Sabbath guidelines and attending the beloved Lego event on the second day of that weekend. We decided to break our new rule and go to the event on the second day of the weekend. After all, we made the rule so that we could enjoy the holiday season more fully, and we knew we would all enjoy the Lego fun. This never sat right with me though. In seasons past when our busy-ness sapped our strength and joy, our schedule was (over) filled with fun, enjoyable things- no drudgery; yet the pace still wore on us. So I sensed that breaking our Sabbath boundary to avoid missing out on something fun and enjoyable was not going to work at all. I knew that every single weekend during this festival-and-party season, the prospect of something fun, memorable, important or educational would beckon to us, asking to be dropped into that emptied Sabbath calendar square. Still, I persisted. I told myself, “We’ll go to the Lego fest this one time, then that’s it- we’ll protect a Sabbath day each week through the end of the year.”
Two days before the big weekend, I went online to secure tickets. I had delayed, at first, because we were throwing around our scheduling options, and next due to reluctance mixed with a delusional belief that the less popular time slots wouldn’t sell out. In reality, all of the time slots for this hugely popular, once-every-two-years event sold out long before I got around to checking on tickets. So we didn’t go. After the excitement of their birthday party, the kids never even asked about the Lego event that weekend. They still haven’t- it just hasn’t come to mind. While I’m sure the event would have been a blast, I was surprised that there really was no sting in missing it. And we had a very restorative day at home instead.
That first experience illustrated to us the immense value of rest, and it revealed that the one obstacle that most often robs us of rest- the fear of missing out- is actually not a very formidable foe; it turns out that the thing we feared- the phantom prospect of missing out on something- never materialized at all. True, we did not attend the Lego event. But during our peaceful unplanned day spent at home, we did not miss it either.
This is how we started to implement the principles of Sabbath as a family. We continued this practice of keeping one weekend day clear for the rest of the year. We have enjoyed it so much that we are going to continue it indefinitely.
A quick look back:
Unbeknownst to me, this Sabbath idea was percolating at the beginning of 2016. Last year began with a post about The Big Rocks: Self-Care for Care Givers, which describes prioritizing items in your schedule which are of the most value to you, then fitting in less important or unimportant tasks around those big rocks. It seems as though the rest of last year was a slow, progressive implementation of that post as our family pared down our schedules and our possessions. That was providential because 2016 was indescribably stressful for me, with so many people, opinions and mistakes thrown into our well-established routine via the Medicaid hoops, nursing SNAFUs, invasion of our introvert sanctuary, the start and shuffling of twice-a-week therapies, the transition from ECI to the school system and ongoing nursing and Medicaid difficulties. This “Big Rocks” process of purposefully stewarding our time and energy protected my sanity last year. At the same time, I was completing an intensive spiritual discipleship program through our church which introduced me to the works of CS Lewis and other gifted Christian and Jewish theologians. As I studied, the themes of prioritizing my time and resources and seeking rest stood out to me, given my stress. Naturally this led to the study of the Sabbath, with is prominent in the Jewish theology I ventured into, and which is the subject of the Bible study I ultimately finished the year on (Priscilla Shirer’s Breathe).
A look ahead:
As I mentioned in the last post, however, this attention to rest and Sabbath results in less blogging. Or no blogging. So, while I have many topics and resources I would love to share, posts in 2017 may be sporatic. If you ever wish to check-in with us or ask a question, feel free to use the Contact button on the blog. We don’t expect any big medical changes for June this year, since she recently got her g-button out (WOOHOO), and her doctors want her trachea to grow for another year before re-evaluating options for another attempt at removing the trach. However, Greg is hoping to transition into a new professional field this year, so we are waiting to see what new adventure his school and career opportunities will bring to us as a family, in terms of our routine and location.
We are quite excited about the year ahead.
I hope to share more formally about our adventures in communication with June, specifically the use of American Sign Language, verbal speech development, and her assistive communication device. However, for a few months I’ve been savoring some much needed rest and protecting a “margin” against over-busy-ness in my life and that of the kids, which has led to postponing blogging. This little scene was too enjoyable not to share though. This is a little of the linguistic fun we are having over at the Safari House:
The kids and I arrived at the speech therapy floor of the hospital for the last appointment slot of the day. Only one other family was there- a mother, father, a preschool-aged girl and an infant. My phone had died so I said to the father, “Could you tell me what time it is?” gauging his reaction to see if he understood English. When I saw his uncertain expression I signed TIME as I repeated my question, since pointing to your wrist is a pretty universal gesture.
“Ah, yes!” He said. “Four……forty five?” he said. I thanked him and we turned our attention to the kids, who were hoping to play together. Rowan invited the girl into the playhouse he and June occupied:
“Would you like to sit?” he said repeatedly to her.
The girl was uncertain as her father walked with her to the playhouse, whispering to her to say “hola.” I mentally dusted off my Spanish and attempted to translate Rowan’s question.
“Rowan, tell her ‘quieres sentar?'” I said.
“Um, can you tell her?” he replied. But the girl and her father were excited about this development nonetheless. In our short time together, we all proceeded to have a conversation of comical multi-lingual proportions.
“How…..she is old?” the father asked in English.
“Three years old in….” I attempted in Spanish. “Octobrie? Octiobray? Um, October.” I said.
June began signing in ASL about the family’s infant daughter, and I attempted to translate this into Spanish.
“She uses the language of the hands,” was my best try at saying ‘she signs’ in Spanish. I didn’t know the Spanish word for “bee” so my attempts to explain that June liked the bee on their child’s rattle were not fruitful.
To add to the fun, June pointed to a sign (as in a printed notice, not an ASL sign) on the play area that I had reviewed with her earlier.
“What does that say?” she signed (as in ASL sign not a printed notice) while I was speaking with the mother. The notice was written in both English and Spanish, and in hopes of including everyone in the conversation, I signed ASL while I read the English then signed the ASL again while trying to get the vowel sounds right in the Spanish.
At one point, June was admiring the infant’s pink shoes, and I hoped I learn the Spanish word for “pink.”
In Spanish I said, “How do you say…..these shoes are…..” and at this point I realized I forgot the Spanish word for “color” since the similar ‘calor’ means ‘hot’ so I signed COLOR in ASL which was not helpful at all. So I continued in Spanish, “like….red, orange, blue….” signing the words simultaneously for June.
“Oh,” the father said, pointing to the shoes. “Rosado.”
“Rosado is ‘pink’ in Spanish,” I said and signed for June.
When we parted, we adults said our farewells in Spanish with English words throw in, their little girl had warmed up to her new friends and held Miles’ face lovingly for several seconds as a goodbye, and June surprised us all by piping up with her ever-growing speech skills and saying in Spanish, “Adios!”
One of the things I am grateful for this holiday season is Signing Time, and how it made American Sign Language easily accessible to our family. We are over at the Signing Time blog today where we have the privilege of sharing about what a big impact Signing Time has had on our family. Follow the link below to read more:
Happy holidays, all!
On November 1st, Texas implemented STAR Kids, a managed care system for Medicaid benefits. (See here for an explanation of how and why medically complex kids like June have secondary Medicaid.) Like most families, we could not get any specific information about the change before it occurred, like whether eligibility requirements, family responsibilities, affiliated doctors/hospitals/nursing/DME companies, and program coverage would change or even what agency we would deal with to manage our care. Like most families, we were very nervous about the change, especially given the lack of transparency. And now, like most families, we still can’t get any reliable information. Everyone involved in this giant statewide process is “new” and I’m receiving conflicting answers even about the most basic information like who I speak to in order to update my case.
My attempts to find this information went like this:
Asking the waiver case manager back in June as well as in late October:
Me: So will the requirements change? When will they reassess our eligibility?
Waiver CM: I don’t know. They haven’t told us anything.
Me: Will you continue to handle our case after November 1?
Waiver CM: No one knows. They haven’t told me.
Asking the Medicaid rep when I chose a managed care provider in October:
Me: So, I’m choosing X for managed care. So do they provide our case manager then, or is it still our waiver program case manager?
Medicaid Rep: [confused] You’ll have a service coordinator at the managed care.
Me: So that’s who handles changes to my case for the waiver program?
Medicaid Rep: The waiver program? Is that through DADS [state agency]? If you’re dealing with DADS you just keep dealing with them. X is only managing access to providers on behalf of the state.
Me: I don’t know if the waiver is under DADS. So….I’ll talk to my waiver case manager still and I’ll have a managed care service coordinator. Do I have requirements to meet and report to both?
Medicaid Rep: Ma’am, your service coordinator will just help you find a doctor.
Me: We have all of our doctors. I need to make a change to our case.
Medicaid Rep: Let me put you on hold. …. OK, ma’am, yes, you’ll keep working with your waiver case worker. Everything else stays the same, it’s just that X will manage the doctors on behalf of Medicaid.
I was relieved at this answer, but suspicious of it since my case manager herself had not been told this reassuring news that her position was secure. So I checked back with her just in case after the switch.
Asking our waiver case manager after November 1:
Me: So…..I was told you are still our case manager? I need to make changes to our case.
Waiver CM: No ma’am. You need to contact your managed care provider.
Calling the managed care provider:
Me: I need to find out who my case manager is. I need to make changes to my case.
Managed Care: Do you need a case manager or a service coordinator?
Me: I don’t know what the difference is. We have this waiver and I need to update how we are fulfilling one of the family obligations to maintain eligibility.
Managed Care: Oh, you should talk to your waiver case manager.
Me: I DID. She says she doesn’t handle this and I need to talk to you.
Managed Care: Oh ok. Hmm. Please hold, I’ll check…. Ok, yes. So what’s your zip? And your waiver? And the birth date? Ok….you need to call this number…
Me: I just called you. Isn’t this the managed care line?
Managed Care: No ma’am, it’s the eligibility line for your managed care.
Me: Listen, I just need to know who I will be dealing with, and I need to make a change in our case. No one knows what’s going on here.
Managed Care: I understand.
And she proceeded to try to explain the layers of programs and institutions involved and ultimately gave me another number to call.
Calling the second managed care number
Managed Care2: So we will need to schedule an initial assessment for you.
Me: OK, that’s fine. I actually need to make a change to my case right now, too. Are you my service coordinator?
Managed Care2: [chuckle] No, ma’am. I’m a scheduler. I am calling 200 people to schedule their assessments for the next 5 months, and once they are scheduled a case manager will assign everyone to service coordinators before their assessment dates.
Me: So, I may not have a service coordinator until April.
Managed Care2: Yes, but if you need anything before you have a service coordinator assigned I have this other number for you to call……
Me: [SSSSIIIIIGGGGHHHHH] Ok. Well have any of the eligibility requirements changed? I noticed that our waiver is no longer on the waiver list on the Medicaid menus, and someone said it was going away. Is it going away?
Managed Care2: Um, it’s my understanding that nothing has changed. We wouldn’t discontinue any waivers- we don’t have the power to. Only the state of Texas can do that.
Me: Ok. So, is the state of Texas discontinuing our waiver? It isn’t even listed on your phone menu options.
Managed Care2: [in a state of wonder] Well, I don’t know, I haven’t heard anything like that. I’m new to all this! Have you seen our website- it has wonderful information.
Me: Ah. I. will. check. it. out. Thanks. [The last time I checked the Medicaid websites, both the old the new ones, the information basically amounted to “Medicaid is changing to STAR kids on November 1!” but it did not have specific updated forms and requirements.]
One week ago, the kids and I ventured out to the polls for early voting. The “big kids” (my 5-year-old, Rowan and my 3-year-old, June) had decided who they would vote for, hypothetically, by watching snippets of the debates. This was our pre-voting conversation- June contributing in ASL.
Me: OK, guys, let’s go vote!
June: I’m scared of boats.
Me: Not boat. Vote. V-O-T-E. [I showed her the ASL sign VOTE see here.]
June: Vote, not boat, V-O-T-E. What’s vote?
Me: It’s where I pick who I want to be in our government.
June: Who you vote for?
Me: I’m voting for Hillary Clinton.
Rowan: I’m voting for the same person, the girl in the red shirt [in the first debate].
June: I vote for the moon and stars.
Me: That sounds good, June. The election is very important because the people who we elect make decisions about our whole country.
Rowan: Maybe our president will help Ms. Clinton.
Me: Probably, because our president and Ms. Clinton are in the same political party.
June: OOh! I go vote. See the party.
Me: It’s a different kind of party. Ok, let’s go vote!
June: I vote. Not boat. With talker in my backpack. [Her new AAC device to communicate with people verbally.]
The kids and I excitedly made our way to the early voting location, which was conveniently located at a church that we frequent for Deaf ministry events.
Me: Ok now, we gotta be quiet while we choose.
Me: So other people can make their choices too. What’s happening here is very important.
Me: Well, whoever wins will be president until you are nine years old. And we want to pick the people who will make the choices that we want them to.
June: I pick the stars and moon and water.
While explaining our voting experience to Greg, later–
Rowan: We picked Ms. Clinton! She’s our president now.
Me: No, actually, we don’t know who won yet. Everyone in the country gets to vote, then only one person wins.
Rowan: Why is that?
Me: Because our country only has one president, and everyone gets to vote for which person they want to win. On election day we’ll keep track of it on a big map and find out who the next president is.
Tomorrow is the big day!
This series focuses on special needs family outings: what goes into the decision and what comes out of it. The last post featured two mall outing opportunities that appear identical, but are actually on opposite ends of the spectrum when viewed from a risk assessment perspective. Consequently, one invite was accepted and one was declined, which would be puzzling to an outsider to whom the invites appear the same. Special needs families know all too well how often this situation occurs, and the unfortunate misunderstandings and judgments that can result. The already difficult process of making travel and outing decisions can feel like a mine field of potential interpersonal conflict.
At this point in our journey, we as a family are blessed to be surrounded by wonderful friends and family who have invested time into understanding our circumstances, so we rarely deal with these difficulties nowadays. But along the way we’ve experienced each of these misunderstandings at some point, and we’ve heard countless similar stories from others in the special needs community.
Today we’ll take a look at a few misunderstandings that special needs families often face and how they can be managed.
The last post hit on the most common type of misunderstanding:
1. People outside the family seek and/or assume black-and-white rules for the family’s outing decisions when, in fact, none exist.
Usually the root of this problem is that others assume the special needs family has been given straightforward “dos and don’ts” by their doctor, leading to questions such as,
“I thought you could leave the house now.”
“Are you allowed to go to the mall or not?”
“You mean can never be around school kids?! That makes no sense.”
If the family has an opportunity to explain in response that travel decisions are based on risk assessment rather than absolute dos and don’ts, the misunderstanding usually clears up quickly. However, other people’s receptivity to this explanation is usually directly related to how often they use this type of risk and benefit assessment in their own decision making; occasionally people find this approach so foreign that the misunderstanding ultimately remains.
If the family is not given the opportunity to explain (or if they choose not to), people may make unfortunate assumptions about what appears to them as inconsistency in the family’s decision making. We’ll discuss this below.
A second type of misunderstanding or source of conflict is when
2. People seek to make accommodations for the family but are disappointed with the results.
People who understand the decision making process may offer to mitigate some of the risk in hopes that the family can attend or participate more fully in an event, which is wonderful!* However, if for whatever reason, the family is still not able to do what the well-intended person was envisioning, that person may very naturally feel disappointed, sad or even resentful. In the mall scenario, the second friend may say,
“Can I help carry the stroller over the narrow parts?”
“I can run after the kids if they leave the play area…”
In the example, those are big helps. And they represent significant effort on the part of the friend who has 2 preschool kids in tow. However, the friend may not realize that these helps only address minor aspects of the total risk, leading the family to decline despite her offer. The friend may understandably feel like she’s “bending over backwards” trying to get together and that her generosity is not appreciated.
(*Sometimes offers of help do tip the scales so that the family can go. If so, HOORAY! Win-win!)
The last common type of misunderstanding is often an outgrowth of one of the first two types we discussed. It occurs when,
3. People make assumptions and judgments based on what appears to them as inconsistency in the family’s decision making.
Routinely in special needs forums, people recount heartbreaking stories of loss of relationships due to this type of misunderstanding. This misunderstanding usually starts when someone is disappointed in the special needs family decisions- perhaps the family cannot attend this person’s event, or cannot see them as often as they used to, and/or this person begins to take personal offense to any activities the family is able to do without them, viewing it as the family’s declaration that they value that experience more than they value that person. Again, it is easy to see how this occurs from our two mall outings example, when activities which appear identical to outsiders actually carry very different levels of risk. In any case, this person is disappointed initially. The either don’t understand or don’t accept the basis for the family’s decision, so they create their own explanation, often as their disappointment is blossoming into sadness, anger, resentment or grief. Some sadly common examples of things that are said about special needs families in these situations:
“They just went to the mall last week. They can go. They just don’t want to.”
“They use that kid as an excuse.”
“They saw Talia last month. I guess I’m just not as important to them.”
“I bet they aren’t coming because they’re embarrassed that [they don’t have…../their kid can’t do…./they can’t do xyz….]”
“They said that their kid has [xyz problem] but I saw him doing [abc], and that doesn’t make sense. I don’t think he’s as sick as they say he is.”
“They make a big deal out of everything. They just want attention.”
Naturally, the relationship suffers when disappointment ushers in anger, resentment, gossip, and judgment on its heels in this way.
So what can be done?
For special needs families and those close to them alike, communication and grace are the simple but powerful keys.
These can be put into action by:
- Everyone involved remembering that the special needs family is solely equipped and empowered to make these choices. Each decision is so unique that it really can’t be compared to others or evaluated by those outside.
- Special needs families proactively sharing their decision making process to others, when possible, not with the aim of justifying the decision but rather to raise awareness of the process for their own sake and that of other special needs families.
- Those close to special needs families asking questions about the family’s needs and/or how they can help.
- Both sides bearing in mind that patience and grace will frequently be needed as they work to understand each other.
- Both sides taking the risk of talking over their misunderstandings and disappointments with each other and resisting the slippery slope of judgment and gossip.
- Special needs families who find themselves being judged should likewise avoid the unhealthy trap of vilifying, gossiping about, hurting the one judging them; rather, they should confront the person involved as gracefully as they are able, which will end the cycle of misunderstanding and judgment either in a resolution or in cutting ties.
Soon we will explore a much more fun aspect of this complex topic: sharing some of our own adventures including what travel and outing plans worked well for us, what didn’t, and how our decision making in this area is changing as the kids get older.