The Gift of Working Parents

I think the gift of , what for some people, is a hard thing to have to be gone from your children while you are at work full time-is to realize you have to be intentional about your time with them. I don’t always look at it as a gift, but in everything you can find something to be intentional and appreciate. If I’m spending my time griping at my kids only and don’t look at those evenings of impatience and back-talking as teachable moments-it may end up only griping and for my child, being griped at. In a day at home with them sure I may have many opportunities for teaching and guiding and of course having a kid with special needs that may involve an entirely different way of looking at it-desperation to teach appropriate social skills, complying, making smooth transitions just to go brush teeth…I could be upset and say “I can’t be a good enough mom and I’m distracted at work as well so I cant be a good enough (therapist, teacher, accountant, fill in your blank..) but until I look at the moments and hours and days as opportunities and take one thing on at a time and tell myself “hey that worked out well, good job” then it won’t even matter if it was when I was at home or working full time. A parent can let days of being a stay at home parent be missed opportunities and stolen joy if it is seen as frustration and drudgery.

 

 

So I want to pick one thing to notice, to appreciate about each person in my family. I want to encourage each person (including myself) to do well /improve on something. It may not all be pats on the back, it may be following through on and experimenting with disciplines and motivations that work…But I can’t just say its too much and not do it. I also can’t be doing so many things-my gosh the exponential amount of duties and responsibilities parents have is staggering in comparison to our high school counterpart-and then chide ourselves for not doing enough. We-all parents- do SO much, friends. To make it useful and fruitful is whether we are allowing God to work through us. I will be transparent and say that I am in a season of struggling to feel like I am helping my son. I am constantly checking to see if his specialized therapist is getting set to start (it takes some paperwork going through and so forth, plus insurance things are changing so its a different process.)  I take more mental snapshots and assessments of how things have gone since my time with my children is more limited working full time. The intentionality and making use of the time is what I mean by the gift of working parents. We are extra cautious in planning because the weekends and evenings are gone if they aren’t planned. Last minute plans are not as easy to come by as working parents. Planning can help with intentionality, but watching for opportunities and having hope and not despair are also needed, however.

I am talking to myself more than anyone of course. I hope these thoughts helped you. Its a little more vague than my usual posts but those who know me know this is partly how I process.

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From Down syndrome to “DS-ASD”

I remember my friend who works with kids who have developmental needs told me kids with Down syndrome can and often do also haven autism I said “oh I can’t think about that, I’m just dealing with the Down syndrome diagnosis, I feel like we keep uncovering more things to deal with.” I was skeptical you could have both truly and did they really have a higher prevalence of autism, or is is just harder to tease out the characteristics  of Down syndrome and autism?

Well, for a long time I just attributed some unusual play behaviors to Down syndrome and Ethanks quirks and possibly hospitalizations and frequent moves. After awhile though,  I kept coming up blank with why he kept doing certain things. I finally wanted to push harder for answers that would hopefully lead to help (because his therapy providers seemed stumped or didn’t always see a lasting issue at the time) when I saw Ethan playing next to a little girl with Down syndrome and it was so different. She was younger and had the same diagnosis yet was far ahead and more complex in her play from what I saw. She was playing pretend with the toy food while Ethan was steadily throwing it all over the shelf feverishly. I could tell it was a common occurrence, not something to annoy the girl (she didn’t even flinch) or anything of that nature. The same sort of thing we saw at home.

That made me want to stop asking the providers to help with the issues (throwing, repetition) so much and go to his doctor to request looking for formal answers. I learned that there actually was research out there, and kids being dually  diagnosed with Down syndrome and Autism Spectrum Disorder (DS-ASD). At a mom’s night out for the Down syndrome association for my state, someone encouraged me to ask Ethan’s doctor about a referral, so I decided to go ahead.

I first asked at the next sick visit and was told we can’t address it at a sick visit. I wrote a letter to go to his sick visit with his grandma (they were close together) and again told I would need to be present to discuss with the doctor which I understood. I just had to try because it is hard to take off so much for all the appointments and days off school. The doctor we absolutely love, by the way, asked a lot of questions and said she was concerned that his speech progress as well as play behaviors have stayed the same for so long and said “even having Down syndrome, he should be advancing more .” I hadn’t been that concerned about the speech myself since I know some kids wit DS who are completely nonverbal but she sent a referral for him to be tested at a developmental center near our Children’s hospital.

Love me!

 

 

REFERRAL AND TESTING PROCESS

It was going to be a 6 month wait to get evaluated-that is a very long time when you have struggled for answers for 3-4 years. While we waited to be prepared, I watched older videos of Ethan. This was very hard for me. He seemed to much more responsive even at that age of 2 and while I had dropped off some of the ASL use (signing) which I regret and have since picked up, it was obvious that it wasn’t just that. There was more eye contact back then, more spontaneous speech, and namely-he didn’t throw every single thing. He didn’t tap things on counters, or try to get things behind everything else in the room. I have to say I am thankful because Ethan is not totally disconnected , by any stretch really. He hugs (we have since realized he is very sensory seeking and partly this is why he likes to be held and hug and throw himself against cushions. The testers and his current OT have said this on their own, affirming what we have realized.) He will smile and look at us and he has actually really improved with speech actually trying to answer a couple of questions in the last few weeks which may also be due to overall health with growth hormone treatments.

 

AUTISM TESTING

So back to the testing, my mom took him to his complex care doctor visit and they offered to have the psych who has follow shim annually there set up two appointments to make him get him faster for testing. They did this by making an appointment for me to come and answer questions with Ethan present to determine need for testing in the first place. She observed him and tried to get him to mimic play behaviors as well but he wouldn’t do ir for very long. He emptied and filled the same bucket of train tracks for 30 minutes even though I showed him how to put together the train tracks. He did throw a few things and the first writeup showed that I had taken things from him I thought he might throw (I was right, I gurantee lol it its nstinct now.)

 

She decided he did show some ASD characteristics but said it can’t be determined and would be difficult to tease out since he has Down Syrome but asked me to fill out a long booklet of questions about functioning to prepare for the ADOS-Autism Diagnostic Observation Schedule. She then made an appointment for testing.

The test was the ADOS and Ryan attended this appointment. Ryan said the tester said beforehand “it will be really hard to know if he actually has autism since he has down syndrome but we will test him. ” It sounded like they were doubtful and would be a waste of time, which Ryan texted me. me he hoped it wasn’t a waste of time and I was upset for Ethan missing his class picture possibly for nothing and  also because if he didn’t have autism, it would mean a harder time at getting ABA therapy possibly.  I didn’t want him to have autism too but the truth was we already knew something was going on with him that was different than many kids with DS.

 

The plan was to have him with one tester sitting by a one way mirror while Ethan and another tester were in the room . For some reason they included Ryan in the room and asked questions later or during. Ryan said Ethan threw things behind something just like at home. They took toys from him to see how he would respond with transitions and dealing with moving on toothed toys . Ryan said it was hard to watch and Ethan didn’t completely freak out but he was at a loss on what to do and was hard to redirect to newly introduced toys, staying focused on what they took away with warning. Despite their initial skepticisms, he had enough they saw that made them determine he has mid autism, and we are waiting to get him approved for in the home ABA therapy. This to my understanding they will involve someone about 20hr/week in the home helping shape his behaviors and gain better “scripts” for play so he isn’t doing the same thing over and over-especially because since he doesn’t discriminate hard vs soft things or appropriate things to throw, it could hurt someone. The other issue is he spends so much time on this, it really blocks out learning opportunities

 

PLAY AND LEARNING.    

What if you only played with a ball your entire childhood? No legoes or puzzles-spatial knowledge. No dolls or action figures -no role playing and pretend play. Granted he has occasionally done things like this or play dough or paint, but only for a few minutes.

It is something special when we find toys Ethan will engage in normally, for however long it lasts. We are hoping through ABA his repetitive behaviors will be curbed and he will explore more and do better with transitions at home, maybe stop screaming so much for attention (literally guys, he started it 6-7 months ago at after care.) It is tough when he is determined to climb the counter over and over or throw something/aim for the fan, put things behind computer monitors just because he feels the need to (I think the counter thing is more being ornery, but regardless of punishments or redirections he will keep it up. He did 45 minutes straight one day.) Another thing that had changed from his younger years was he used to listen to and engage in story time. He got ALL books for his 3rd birthday from us . It has been few and far between since that time he will really sit and engage In a book. When its just me and the kids, he climbs his sister’s dresser while I read to her and I end up restraining him in my lap or occasionally handing him an I pad so his sister can experience a good story time like he did at that age. He WILL listen to Pete the Cat and his white shoes because he has read it so much in class I think, but he has to be holding it. 🙂 )

We try to improvise for the time being by Ryan installing a gate to the kitchen, not allowing him alone in Katelynn’s room (the drawers are breaking), and I try to occasionally read Ethan a story while he is eating a meal because he is already sitting still and more likely to listen or at least hear it. I have hopes that we can be innovative and get help from the behavioral therapy. His improvements in speech in the last few weeks have been a big encouragement to us also. If you feel something isn’t right with your kid, go with your gut and keep searching and keep asking!

Our first IEP experience-tips and a child profile example

I am still far from an expert since it was our first one, but I was told to make it known what you want/your goals for your child and I knew many parents gave an organized list of their child’s strengths, challenges, and safety or medical issues.  They did write some of our concerns such as Ethan having one on one speech therapy as much as possible and letting us know if it won’t work so we can do additional therapy after school. (He will already be doing some.) They also included our interest in Ethan spending some time in general education class and they said in addition to the activity classes (art, PE, lunch and recess) they could provably work out him going to some regular class circle times.

 

I don’t have a long list of tips other than know your rights, keep copies of everything, and know that if you anticipate problems you can get an advocate who is well versed in special ed law through DHS.

 

 

Below is what we took to the IEP meeting to help the teacher and admins see in an organized way what Ethan is like and what needs and concerns we have. We thought this would help them see what needs he would have to help with placement conversation as well as to give to who would ultimately end up being his teachers. (Some people include a picture but we did this the night before on Microsoft Word after a lot of illness and craziness. At open house we will probably print it again with a picture.

ETHAN CARROLL

 

Strengths/preferences

  • Affectionate
  • Recalls music/songs/rhythms and is more likely to retain and verbalize knowledge this way
  • Follows along well with routines/circle time/line up procedures.
  • Does well with visuals (getting a device for communication soon)

 

Emerging skills/needs assistance

  • Will go to bathroom (to urinate) when taken but does not cue (diapers)
  • Help with learning how to get clothes on/off
  • Traces some shapes or letters
  • Passive with peers-may be easily pushed around
  • Throwing is a stimming go-to. Throws anything especially during “down time” or center times, not to be “bad” -especially toward end of day. Giving beads seems to curb this if Frisbee and ball play not possible. (no complaints from schools this year.)

 

Safety precautions

  • Flight risk- has not been at school, just parking lots or unstructured (like busy foyer at church, wants to leave room)
  • On thickened liquids only
    • no water fountains
    • no popscicles or ice cream
    • No fruits such as oranges, apples, strawberries
      • Can have bananas
    • No trampolines/hard jolting/contact sports (c spine instability)
    • Has a g button- feedings will need to be done at school
  • Ashtma/lung disease/dysphagia
    • Has inhaler at school
    • Watch for tummy or neck sucking in-call parents.
    • Averages 2x year hospitalizations for respiratory issues
    • Might choke easily especially when has a cold, watchful at lunch time especially

 

 

In the Home

Dad, Ryan

Mom, Natalie

2 year old sister Katelynn “Sissy”

 

How we wish we could respond to “what did you do all day?”

It is the

Enjoying a peaceful moment (as much as it can with a toddler!) with my son just before his 1st birthday.

bane of every stay at home parent’s existence, in either imagined connotation, to slight hints, to the unwise moments of spouses who have actually asked out loud “what did you do all day?”

(For the record Ryan never asked that in so many words . He definitely doesn’t say it now that he has seen what it is like to be home with children. There are definitely hard things about having older babies, but its a whole new ball game when you have a toddler even for a calm, good-natured kid.When they aren’t staying on their little lay and play, you’re working on housework, cooking AND on the run. And of course spending time helping your child discover the world.)

I have had three years of stay at home mom experience, some of that time with two young children, one who nursed but struggled with reflux so it took a HUGE portion of my day (also she didn’t really take real naps until she was one. Lovely right?) Also when I am not working full time, I am alone with my children unless where are visiting relatives, before which I have often packed a lot of special needs equipment so I know that feeling of being in a house with children all day and trying very hard to have things clean and complete but….there ARE kids in the home with you.
So here is my little ode to you parents feeling the futility.

 

 

When you walk in and you first see some socks scattered across the floor what you don’t see is the trash I put away- the first thing our child just had to throw, and /I thought socks was a better alternative.

When you see a pile of clean laundry on the couch, what you don’t see is how I picked up dirty laundry from when you had to hurry off to work that I have already cleaned and dried.

When you see dirty dishes in the sink, what you don’t see is the time I took to clean out older leftovers from the fridge while teaching the kids to not eat and throw play dough.

when you see tons of toys scattered across the playroom, trust me when I say I have made them pick up all day long-that mess is literally from the last two minutes Not even exaggerating.

When you see a pot on the stove that I haven’t cleaned yet, it’s because I cooked while attending to crazy little hellians-I mean children (you’re welcome.)

When we have a crazy amount of grocery bags our toddler likes to wear on her head, lets remember it’s because I bought groceries. Whether it was click list or in store, it was hard work and took some prep time. That is when I sat.

To sit, I had to lie down with a toddler to get him to sleep in order to do that grocery list.

That’s what I do all day.

Close calls, the fallout, and thankful hearts

9 Months Old in Infant Toddler Unit

Originally I had journaled awhile back in thinking of the unique ways having a medically fragile child affected the family but it led me to thinking of how thankful I am I have a medically fragile child rather than a memory of a baby I had for awhile then sent to Heaven. What I mean by that is the issues Ethan has with Chronic Lung Disease, whether he was going to have them from the start or whether they came about or were worsened by his major hospitalization as a baby, could have ended his life back then. Honestly there have Been several times that could have happened but I think Ryan and I both agree that first major stay when he was on a ventilator for a month was the closest call.

So I will talk about some ways the Chrnoic Lung Disease have affected our family while keeping in mind that I am so very thankful that he is with us still.
1) Sleep issues. These are sleep issues that aren’t developmentally normal. It isn’t typical newborn wakings for feedings or even teething and ear infections of infancy and toddlerhood. We did have all of that plus the timed feedings to get him nice and heavy for his heart surgery at 6 months old. (You don’t get to celebrate the baby sleeping a good stretch if you have to go in every 3 hours or more to feed a long forced feeding.) Ethan was certainly a good sleeper, but with the blessing of home oxygen comes the monitoring equipment that beeps, sometimes very often even though we are giving him the intervention the machines are telling us he needs. Sometimes its an error like the toe probe coming of and that is even more irritating because we are losing sleep for something that he didn’t even need and let me tell you he does not always go back to sleep even at 3am!

Also he was an amazing independent sleeper, I’m sure partly due to the fact that he was in a hospital a lot and had noises going on a lot and didn’t get rocked to sleep because he was chemically paralyzed for a month in mid-infancy. Now that independent sleep is mostly gone because he needs oxygen when he sleeps so often that we have to lie down with him to get him to sleep because otherwise he will pull the nasal cannula out and pulse ox probe off his toe. That on top of baby sister being really demanding and waking a lot a couple of years ago added up to not a whole lot of evening time for mommy and daddy! but now that he hasn’t been taking naps as much he’s out faster and we have felt a little more “normal.”

2) Missing social events. Everyone who knows us knows this is part of the deal for us anyway. It’s a personal choice on how limiting you want to be at what times of years, etc Burt also doctors have advised us to limit Ethan’s exposure this year. We are hoping the g button will help with that concern and he won’t aspirate as much. It takes a toll on us spiritually to be missing so many church gatherings however we have started to go to an equppping class/ e group and got to go to a Christian marriage conference recently so that has been a huge boost! OTherwise, unlike for our daughter, any babysitter of any kind or age or knowledge is not enough for the medically fragile child. At least not for a length of time and for our comfort level for almost any length of times which will be even more important when he also has a g button. We have lots of supportive family so it hasn’t been a major issue but depending on what’s going on, it can be hard sometimes. People get sick or have things going on and we aren’t the only ones with kids, after all. If you ever want to bless some family with a medically fragile child and you are in ministry and/or have some experience with special needs kids’ equipment (like speech, OT, or a nurse) then doing a special needs parents night out or just for a friend you know is a huge offer! Our church does that night out thing sometimes and so do other churches in our area.

3)Potty training or other skills or education training-When your kid is medically complex, you spend so much time with your child doing interventions for keeping him alive or going to appointments that sometimes what you are left with you’d like to allow your child to get a say in it. So pushing them to do things is hard and if they also have developmental issues, it is extra hard for them anyway. (Not impossible, and that varies for kids with disabilities-some get it almost as soon as typical kids but for the most part its a long, long process.) But we do it all and so do other parents-because we love our kids. I will add that when your child is very ill in a hospital bed, there is not a lot of leeway for those things and you can focus on speech all you want but the other things go by the wayside. Ethan is like Bambi after each hospitalization with his gait, and we have lost a lot of potty trips in that time.

4)-White coat syndrome-He is also kind of emotionally traumized (not exaggerating) now that he is older and can think all of that though more and remember.

5)counting blessings-Something positive I could say is we do not take our days for granted because we know how dangerously close Ethan has been to death far more than I like to think about. It was mostly when he was a little baby, yes, but also when I went to see him after work in October at the children’s hospital, they told me they were worried they were going to have to put him on a ventilator the way he was moving and acting. A good deep suctioning and prayers kept that from happening! (Deep suctioning-tube going way down, not just the straight tube in the nose, but a coiled one)

To look at where I am now and where I was back then (both of us, but this memory was just me walking in)—I remember sitting at my desk as a new working mom arriving at 8am and before I made any calls or welcomed my first kid for therapy, I cut out a number 9 from construction paper and made a “9 month” card for Ethan turning 9 months so I could take a picture of him with it in the step down unit at ACH. I was so happy he was off the paralytic for that. When he turned 8 months old, he was like a sick, sad tiny Rip Van Winkle and I did not want a picture of that for his baby book. And now look-I go to work and while I know he can get sick again like that perhaps, right now he is 5 years old prepping for kindergarten and enjoying his therapies and I Pad time! I live in the town in which I work, and I get to come home to him and his sister’s smiling faces and see them wrestling together. Yes I have a lot to be thankful for.

Being a person when all you do is take care of people

I stayed home a long time (to me it was long I guess because so much happened) with my son and daughter, who are now five and two. When you are there for taking care of kids all the time, or even when working full-time like I am working now and also “take care” of other people’s kids’ emotional needs (being a child and family therapist) to then come home and watch my own kids, it can be hard to remember how to just be a person. I realized when I was staying home with my kids that I was not really doing a lot during the day and often not even when they went to bed, to continue my own thoughts and interests. It started when I was a new mom and of course you want to get into that role and I have always been passionate and excited to be a mom. I additionally researched a lot of extra things since my son has Down Syndrome and some other medical issues. I spent a lot of extra time/free time making things for him to help him learn and so forth. This isn’t a bad thing to do, but also you can get burned out if you are spending all your time looking up recipes, finding fun activities to do with your own kids or group therapy ideas for your kids (or whatever you do on your own time for your work career.)

 

So here are some things I have been working on and have noticed my husband do (who is currently a stay at home dad for my son during the week then works as an RN on the weekends.)

1)Its something simple but something I missed and realized was missing after a few years

1)Listen to your OWN music. Everyone loves music of some kind but I feel like it was a huge deal because not just listening to , but playing music was  a HUGE part of my life and free time/passion so first we moved a lot and had no room and I felt I didn’t have time anyway, for me to play piano or keyboard. I already wasn’t in band anymore after college (which is fine, fine with that season being gone haha but I miss piano!) So then I realized heck, I’m not even listening to music of mine! It is ALL Wiggles or Signing Time and now whatever Disney movie is on Netflix. I still am not great about it and even though I blog I am kind of old lady when it comes to technology so I’m like oh yea gotta as the husband about downloading Spotify….anyways folks, it matters!

2) Find some hobby that does NOT have to do with dressing your child or looking up ideas for helping your child ..writing about your child? okay so yes I do blog about my kids but I think I’ve branched to a lot of different things plus I enjoy writing/blogging so it’s not like I am totally focused on something for helping them learn or be entertained. I did knit on loom a few years ago and I think I have settled into reading fiction and writing as my go to hobbies when I’m not watching Netflix and folding laundry with my husband, or playing board games together (which is something he is mainly into but I do it too and he is on the lookout for things I would like so we have something to do together other than TV. Yes I could do outdoors things but not when hte kids are asleep right? Right. I do love walking and being outside but I’m talking stuck indoors in the trenches of pre K parenting here.

3) When you have a long weekend or extra snow day or even on a regular weekend or whatever, do not feel bad about not hovering over your child. I think people go between the extremes of ignoring their kids and starting at their phones or thinking you have to constantly be verbally imparting some wisdom or in their faces in our culture. You probably know deep down when its okay to check out mentally while supervising your kids. So, do it. I think its fine to read an article or video (probably on mute with captions!) on your phone here and there if it helps you be sane and feel like a person and not a mom/dad zombie. Also I know most probably feel just fine about this but in case you don’t , please don’t feel like you can’t do housework as long as your kids are safe. It’s hard to get done but the more you get done while they’re awake,, the more time you have to try and be a person/do your own thing and with your spouse at night. The kids help me with things. occasionally genuine help, often just them making it take a little longer but more got done than it would have if I did it ALL at night or nap. Nap is never promised in this home lol although my daughter has become much better about it since last year. That so didn’t happen when she was a little baby, not for long.

4)This is more specific and short, but stole this idea from my husband and therefore may appeal more to males. Okay I’m not saying do it ALL the time, but he has some headphones and listens to podcasts or whatever here and there while watching our son during the week (He is still attentive and doesn’t abuse this, however. But I am just saying if it keeps you sane…Here’s looking at you, parents of kids who don’t nap much or at all!

I think that’s most of my ideas but I might add more in the future if I think of more. What helps you moms and dads feel more like a person again?

Changes for Ethan and our sanity

I don’t even know what this is going to look like since I opted to skip pen and paper journalist and I have had so much I have not fully processed because I’m taking care of kids/working and chugging along, but I knew I needed to journal by typing or pen and paper (cuz I’m way faster at typing than pen and paper writing, so here we are.) And I like to share some things because its hard to have time or the words on the spot in family gatherings and attempts to talk with friends. Because of all the things I am going to share is some of the reason I might come across as flaky or inconsistent in trying to make or maintain friends although traditionally I have been pretty great at that (ha)

So here we go…
What I thought was a short-term journey of getting Ethan to get “a little older and stronger…to school age” etc. has become more clearly not quite as short term as I had thought and hoped. He gets hit just as hard by illness and as we were told in May by his pulmonologist (lung doc/APN) his lungs are like “preemie lungs” basically. This to my understanding is mostly due to him being on a ventilator for a month as a baby (7-9months old in hospital). I used to say I don’t think I have PTSD, even a little bit of the characteristics (and I mean real PTSD because Im a therapist for those who don;t know, so I generally don’t throw out diagnosis labels like slang) but more and more I feel like Ethan’s illnesses and anxiety revolving around it have gotten to me more than I thought. For example, I was at orientation and doing a half day of CPR like I have for other jobs in the past, even in NICU before we could leave with Ethan we had to do CPR. Never have I felt I had to look away, have my heart beating fast, or start to cry from watching a basic, poor acting and low budget CPR video.

I am still positive and feel like overall he will do well, but it is really overwhelming to know its no longer an “if” Ethan will get hospitalized (and not just an overnight trip either. We are talking a week ast least, even with home oxygen available for the tapered oxygen end. Which is now up to 3 weeks overnight when he has a basic cold, by the way.) Those hospitalizations usually involve a stay in ICU sometimes for his history but they actually said they (experienced Picu nurses) were worried he was going to have to be put on a ventilator a few weeks ago…at age 5! for RSV! That illness is usually nothing for older kids and we were told he is so inflamed he could have another bad round if he were to get it in the next 3 months (or something like that…all that information swirls around in my head especially because I am getting it all by text and conversation usually since I started a new job.)

BALANCING GAME
So here we are, trying to find a balance with Ethan’s social, educational, and medical needs (and survival) It is not us being dramatic but rather doctors telling us he does not need to be around kids with snotty noses or coughs. Well if you have ever worked in group care or at a school you know that is basically ALL winter. Last time a lung doc told us she thought he needed to be at home until he is older because of illness, we decided that if we were near a children’s hospital, we would take the bad in with the good so he could be in school/preschool while he gets therapies. Well after that scare in ICU and what even more lung docs with varying degrees of conservatism, we decided if that many of them all agreed he doesn’t need ot be around it, we would do what we could to get him to be in school in hte spring and summer (for prek) and homeschool in the winter so he wouldn’t be in a hospital as frequently. (He has not had therapies in quite awhile because if you get inpatient therapies but you don’t feel your kid is well enough to do so much being around other kids, you don’t get therapy. Which is fine, that is how it is set up. But as it stands, he is already missing a lot of school anyway from being sick and missing therapy. Sitting in a bed and suffering by feeding tube placements and suctioning. Yep it literally and figuratively sucks.

So what a crazy notion-When you think about parenthood, you aren’t thinking about how you will have to decide “If I take my kid to church, is it going to make it so he’s still hospitalized from a cold he got and we can’t go out of town to celebrate our anniversary in two weeks?” or worry about germs from Communion ( I know that’s bad but guys this is what it has done to us…) We try to not worry and everyone says don’t worry, pray, and be happy (ok not really but its like the song. 😉 ) I do believe God has reasons for things. But man this kid and our hearts have been through a lot. I do think that’s one reason Ryan is an RN. If it was up to me, there were times I would have waited to take Ethan to the ER or not gone at all. Or Ryan had to fight to get better treatment for Ethan at the hospital because he was being overlooked or the seriousness was not realized then lo and behold, he was deteriroating and needed a transfer to higher level of care. (The hospital is wonderful overall, but you do have to be on your toes as a parent at any facility.) I can watch for the signs but I’m just saying I think that is God watching out for Ethan by his Daddy being an RN, with lots of ICU experience at that.

ETHAN’S BEDROOM/WARD
I say ward because his room is getting to look more and more like a hospital room. Not be all doom and gloom because I am SO very thankful we have those resources. It has shaved off a day or two or more of hospital stays that he can have up to 2 liters oxygen at home (usually just overnight with colds). So while that sounds great, the flip side is this-you hear the alarms go off while you’re asleep/trying to sleep. Your kid is only 5 and likes to rip the pulse ox probe off his toe, so largely Ryan is forced to lie down with him overnight or ast least to get him to sleep. And I know that a lot of parents do that anyway, but trust me being able to choose whether to do so and have no choice are two different things. So our schedules have often been different so we can adequately keep up with Ethan’s needs and when we are both at home, we might not even share a bed for the greater part of a few weeks because of all this medical stuff. Also it went out the other day so we needed a new cord.

Another thing that might be making his room look a litlte more medical ward-ish is that Ethan might be getting a g button/tube /feeding tube whatever he ends up getting or you call it. He basically is very under height and under weight and he is scheduled to get tested for a growth hormone deficiency, but since he is also not drinking much at all (because super thickened liquids are nasty and like pudding and hard to handle…) he is chronically dehydrated and putting in a tube might be a better choice than jumping to testing, although endocrine has followed him for over a year and recommended it. It may be that malnourishment is just a simpler answer to his lack of growth problem. I cried when a doctor first mentioned it, but there ought to be a way he can still eat food but only get liquids by feeding tube. That would be fine with me at this point. We need him to grow so his lungs can grow well and he can heal and hopefully have a more inclusive life all year long. If me or ryan seem to change our minds about things we attend or don’t attend with Ethan please understand we are not being flaky and we are just trying to do what is best for him. Sometimes that might change based on what we know or even what we feel. We try to think of what Ethan would want as well since he doesn’t talk a whole lot. I know kids shouldn’t make those choices but you do think about that some when it comes to 6 weeks of hospitalizations or doctors’ visits per winter vs one per year. He likes school but he likes home too and he has become very anxious about the hospital. So much so he screamed when i showed him a little girl’s picture because she went to his school and she got sick and was even smiling in the picture. the yellow hospital gown scared him and the bed and oxygen tubing . He knew where she was.

Ok this is really just venting and like purging, really, but I don’t care. Another thing that is so hard is every hospitalization is a battle, some more than others, to get staff to listen sometimes. They are good at their jobs for the most part, and some know to go with what we say because we know our child best-but because of delays or people not listening to us, he gets painfully constipated every visit.

So yea that’s why we have moved to different cities and apartments like we are running from the law (lol) because something happens that we thought was behind us and we have to make decisions based on what we currently know.

So we currently know he has chronic lung disease, is malnourished in some ways, and me and Ryan combined at least have PTSD.
Again, these are not all things kids with “just” Down Syndrome have so its really not about that. Like I’ve said in past posts, it can happen to any kid hypothetically. Some of his airways traits that can go along with DS do not help matters, but I don’t even think quite as often about the DS to be honest. At least not when we are dealing with an illness and figuring out interventions for him.

He is making progress developmentally and we will continue to work on that as we are trying to cooordinate outpatient therapies for him.
One thing for sure I know is he is all worth it.
This post/journaling is all over the place but basically it is hard to let it sink in that something is going to be around awhile and you don’t know when an end in sight is. Things have been so hard and socially isolating for us as parents that I reallly just want to kick something or lie my head down and cry. There are no simple answers and us as the parents have to come up with that. We put prayer to it and do what we feel led to do but any decision we make is scary and frankly none have come up with the outcomes we 100% wanted except that Ethan is still with us. And for that we can be truly grateful. He is maturing and putting his dishes in the sink and saying more words and being very affectionate to his little sister. He is not perfect but I’ve complained about his medical issues enough that it wouldn’t be fair to talk about other things. He’s a good kid.