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.

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Pincushion

I didn’t want to title this much more than that because when I hear the word-I know what I am thinking of but because of all the negativity, I didn’t want to give it a full title. Basically, while what I want to do as a blogger is educate and share and just journal aloud because I found that therapeutic to hear my thoughts and feelings echoed in other parents..I just don’t want someone to take that as me being unhappy with my son or my life. nothing could be further from the truth. The negativity I speak of is how CBS (echoing what many think and maybe do not say aloud) praised Iceland for “eradicating” Down syndrome. When they say eradicate of course they mean finding out which babies tested positive in an early prenatal test (which isn’t even always accurate, by the way) then aborted them.

So you see, I don’t want someone to search the internet and find things in my blog to make them feel overwhelmed and think okay, that’s confirmation I don’t want to go that route. Really though, people can find something negative about Down Syndrome and more bleak ways that mention all the limitations and none of the blessings and discussions of how they ARE people (what a concept) in cold medical facts or other unbalanced information out there. So I will continue to write about my reality, even if it sounds daunting with Ethan’s medical issues especially. Here is the thing, though” ANY kid can turn up having one or many issues that rock your life. You signed up to be a parent (or you didn’t but you didn’t prevent it so you might decide to keep the kid and here we are. You sometimes will get a kid who is either born medically fragile somewhat or can get that way at any instant, to be honest (accidents, later onset issues, etc.)

 

So back to pincushion. I labeled it that because I am going to be real that the word ‘pincushion” is what I think of when I think of Ethan (now 5) has to go through on a regular basis. He knows nothing else and has a fantastic attitude, but this is his reality just in a few months:

IN A FEW MONTHS, HERE IS THE POKING AND PRODDING GOING ON

Ethan is now spending at least an hour in an airway clearance system vest for his chronic lung disease in hopes that anything he might be aspiration or illnesses creating mucous would get shaken up and prevent pneumonia (because that last one in May which was coming on when I wrote the last post on ADHD, actually was BAD. Like we didn’t know how bad until the follow-up visit and the doctors were all wide-eyed and serious and talking to us like they really haven’t since he was a baby and on the vent for flu and pneumonia. He hasn’t actually gotten sick since he’s received the vest but I feel like it may have been put to the test (and passed-yay!) when he had low oxygenation when I spot checked the other night (and also rechecked and did continuous) and we bumped it to 4xs daily for the vest treatment. Two nights later, his oxygen was MUCH better. So that is positive. But still, 1-2 hours in a vest?

He also has had his blood drawn SO much, bless him. Just not the everyday kid stuff you know? Also we were told endocrine will probably want to do this long blood test on him while he’s fasting because it appears he has not grown at ALL in quite awhile, so he may have a growth hormone deficiency. Now to be clear, these things are not all that common in Down Syndrome. Down Syndrome and the likelihood of different “floppy” airways or low muscle tone can factor into the chronic lung disease being worsened, but the CLD is most likely from getting sick as a baby. So again, can’t say its only kids with DS who struggle. They do have higher chances for this or that but it doesn’t mean they will get it OR that your typical kids won’t.

In a little over a month he is scheduled to have his airways looked at while he is asleep. He had this done 3 years ago when he got his tonsils out but its being repeated to be sure there isn’t a laryngeal cleft or something. So blood draws, potentially MORE blood draws (while fasting), and a bronchoscopy all in a few months, likely. And that is when he is well. His patience and strength amaze me. We want him to have the most normal childhood as possible and he really does get to do most of that “kid stuff” with us following him around with medicine and extra caution, of course. Extra caution and extra prayer. That needs to happen more than I have admittedly, but I just enjoy each day and try to not think about all the what ifs. Today he cried when I took his oxygen dots off from the other day and handed them to me like “okay throw those away and lets not use those anymore, mmk?’ Oh and he is doing awesome at preschool. It is so freeing to let him do that again and know that while he might struggle with chronic lung disease for a few more years or maybe always, keeping him out at the age he is now is just not helping anymore so we will take on whatever struggles come from illness but we will know he gets to be a kid. Making a new little friend and making cars go down a ramp at the end of the school day.

ADHD-It’s for real, even for adults. My story, from childhood until now

Yes, I grew up in the 90s when ADHD was starting to be talked about like crazy and it was probably being over-diagnosed like crazy. The medications more commonly given have changed some over the years, but the conversation about ADHD among most teachers, parents, and other adults goes about like this:
“ADHD is just an excuse for kids who aren’t taught how to behave.”
“ADHD can be cured with giving out spankings.”
“ADHD is just a fancy term for kids are watching too much TV and having way too much screentime overall.”

I am not saying that I totally disagree with some of those popular statements, but I am saying that the over-diagnosis of kids with ADHD does not mean that we need to ignore the fact that it is a REAL thing. It is not just a childhood problem, either.

ADHD is a set of symptoms and it is based on what a psychiatrist or therapist/social worker finds when evaluating a child-by discussion with parents and child, sometimes also the teacher or other adult stakeholders. Often some sort of questionnaire is used as well. So real criteria is generally used but it is important to rule out some of the same characteristics that could be explained by life stressors or other mental health issues. So now that I may or may not have convinced you there is something to ADHD, here is my story from childhood until now and how the symptoms affect me as well as how I have managed them without medicine. (I am by no means saying that is the more “noble” thing to do or something. In fact there have been times I have considered I might need to seek out medication for symptoms.)

BEFORE MY ADHD DIAGNOSIS
I grew up in a family of four with both parents in a happy marriage, so my symptoms surfaced in an otherwise calm time without moves or any major social stressors. I excelled and was considered advanced and highly creative by my elementary teachers. Entrance into gifted and talented programs, however, were based on standardized test scores as well and due to what we found was my ADHD-I didn’t do as well as I could on those tests. I have never been one to think tests are everything though, so I will share that my focus and classroom behavior were also affected. I remember getting in trouble in kindergarten to the point my teacher had tell the substitute teacher I was sorry and I cried because I honestly didn’t know what I did wrong. (Guarantee you I kept my mouth running chatting to my friends during instruction time and didn’t notice the sub’s corrections.) In first grade, my desk got moved quite often and finally I was sat by all boys, but they were great fun to chat with as well. Even though I was in advanced reading groups in Kindergarten and 1st grade, I still got Bs along with my As in 1st grade. I will add though, this was the year we all discovered that I was near-sighted and acquired glasses. The teacher had to adjust the blinds to help me see the board and I still couldn’t see it well enough, so that made me get behind sometimes.

In the 2nd grade, we got tested to be in gifted and talented and to my recollection and later discussion-I did well, but my standardized test scores ( that all students took) were not quite as high as the other kids considered “gifted.” As the workload grew with age, I started coming home with loads of homework and my parents discovered that other kids were not going home with that much. I was simply behind from “daydreaming” and also talking to other students or being distracted by every little thing. I cried because I was overwhelmed with all the school work at home, so after discussions with my teacher, my parents decided to take me to a psychiatrist to get “tested” for ADD/ADHD (back then they just said I had “ADD” since it was not related to hyperactivity, but the current DSM calls it all ADHD then there are inattentive or inattentive and hyperactivity subtypes. I was a child therapist and met lots of kiddos with ADHD along the way, by the way. And yes, I came across a few in my job who had previous labels and I attributed their “ADHD” to other things that overlapped with ADHD.)

I went to the psych office and did the computer test where an orange box flashed over and over and if it jumped to the top portion of the screen, I was told to press a button with my thumb (a handheld button). I found it intensely boring and would press it very quickly and clumsily and probably 3-4 times instead of once as instructed because it startled me so much. “box …box…box…ugh this is dumb, OH! oh hurry, press the button, it’s on the top part of the screen!!” Afterward the psych talked to me and gave me some Bit-O-Honey candy, which I thought was gross but took it anyway because I was being polite and I was really weirded out by being in a psych office. (Little did I know where I would be hanging out all day as my career, right?)

I was put on Ritalin in the 3rd grade (and possibly something else as I remember taking white as well as yellow pills at night but I was a kid so I am not sure what it was! If I did some research or asked my parents I could probably find out.)

AFTER THE DIAGNOSIS AND MEDICATION
I will go ahead and get the downsides I remember out of the way-I did not like that it made me less interested in eating as I was somewhat a skinny kid, anyway. This was moreso when I was older (maybe I had a medication change?), but I remember feeling somewhat robotic like “I must get this done…must get this done.” When I think about my social interactions my third and fourth grade years, though, I was still a kid who liked to make others laugh, I loved to dance, I loved my dog and family, etc. I wanted to read through the Bible in a year in the 4th grade and did it in less than a year, alongside the adults at church. That was me, not the meds. I was always very driven to read and brought books to restaurants. So do meds have side effects? Sure. In my case anyway, it may have made me obsessed with finishing schoolwork asap (in the drive to the babysitters house after school), but I was productive and had more time for carefree fun at home. I did not lose weight, ,at least not noticeably or my parents would have mentioned that. Another downside is some adults at school treated me differently because I was “on medicine.” Some of them probably assume that included hyperactivity and defiant behaviors even though I had never exhibited those at all. Some teachers in older grades met me as being an “ADHD kid” and if there were trials of medication being removed, one teacher even told me “I have been informed you have been taken off your medication. You need to watch how you act, I’m watching you.” or something to that effect. It was very unnerving and humiliating (even though she said it one-on-one). I had just said something sassy to one of my best friends in the hallway because she had made fun of my shirt the week before in a note then wore the exact same shirt that day so I repeated her words “Honey, those stripes just aren’t your style.” She laughed, but the teacher apparently thought that made me some budding sociopath. I was actually one of her teachers pets generally, but give a kid a label and medication listing? They see you differently. I also simply forgot to stop by the office to take my Ritalin and after recess was confronted by a school employee like I had intentionally skipped my meds or something. Please don’t treat kids this way if you work at a school.

The PLUS sides of the meds were great-I was not as stressed because I got things done in a timely manner, I didn’t talk out of turn in class as often (I was still a kid and got notes taken up and read to the class though.) My standardized test scores went up into the 90-something percentile and I was asked to be in the gifted and talented program at school, which I did participate in for the last 2 years of elementary school. I still had my creativity-I remember writing stories about a dog after school sometimes.

MY ADHD WITHOUT MEDICINE IN OLDER YEARS
In the 6th grade over Christmas break, my parents didn’t give me meds and decided to see how I did without them coming back in January. I did really well, so that is the last time I have ever taken a medication for my ADHD. Did it go away? Or never really have it in the first place? Goodness, no. My husband would tell you that in a heartbeat. So here is what I have done to manage my symptoms and what I have reflected on in having ADHD my entire life:

I do think being on medicine helped me see what it was like to study, focus, keep my mouth shut during class (man that’s hard), etc. I think the skills I gained when getting help from a medicine to control those wandering thoughts and behaviors to physically wander as well have all helped me cope. First of all, here are some things I have noticed still are present that fall under ADHD: (from my recollection, I’m not necessarily looking up the DSM right now, but these are some things I have struggled with, followed by things that have helped me cope:
-losing train of thought
-daydreaming
-not completing tasks
-disliking tasks that require lots of detail
-multitasking is hard
-losing items
-distracted during conversations and doesn’t appear to listen even when there is no obvious distraction
-go from one thing to another/difficulty sequencing or managing things
-for me, I don’t plan out some things well as far as handmade things-measuring, it being sloppy because I am rushing, etc. That isn’t to say I have never completed things well or made things look nice-I have! It can be hard with my ADHD, though.

I came up with those things that I have noticed in myself as a struggle for years and double-checked an online psych source for criteria for ADHD (I remembered most of them anyway because social work and therapy background, remember?)

Here is what has helped me in all my years of no medication and still managing to hold down complex jobs, getting good grades in my undergraduate and postgraduate work, writing a blog :D, and raising kids and running a household:

-lists, lists, and more lists. Even some of the most basic things make the to-do lists. Google calendars was amazing when I was working and managing all my own appointments for therapy (They were ALL over the place because it was family and school-based. Not office visits only. The schedule could have been an adult with ADHD’s worst nightmare, but I handled it!)
-Labeled alarms-For those who know me, I recently shared a screenshot of my recent labeled alarms that included really basic stuff like “Ask about (son’s) poop!”, “Turn crockpot on”, and “medicine.” Some of you are like “woah, how does this lady function?” probably and wanting to lead me to a dementia unit BUT it’s very possible I would remember those things-but as an adult with ADHD, I can’t really afford to not write out everything and use labeled alarms because all those things I just mentioned for alarms that day mattered.
-Double and triple-checking items before locking up or leaving. It isn’t OCD-its ADHD. I know everyone seems to know checking can fall under OCD, but this is a coping mechanism for someone who is so likely to forget an important item. So I always use the keypad to lock the car because it ensures keys are in hand, and as a result I have only locked my keys in my car twice, ever if I remember correctly.
-I try to ask myself in social situations “Have I been asking this person questions about himself or herself? Or have I been rattling on about myself or my family this entire time?” Sometimes I don’t think about it until later and am embarrassed or nervous that I may have been too one-sided. Which brings me to my next point…

EMOTIONAL DISTRESS CAUSED BY ADHD
Everyone may not have this effect, but I have seen it in myself as well as kids I have worked with. Because ADHD is misunderstood and it is just something people with typical brains do not have to juggle, it can cause some anxiety or even sad mood or self-esteem issues. (Self-esteem is also real, by the way haha I see you and your judgements…lol) Just like I mentioned at the end of the last section, my ADHD way of having rabbit trails or talking on and on about what is on my mind and sometimes not assessing the entire situation causes me to feel embarrassed about my social engagement, even with best friends! Having friends who are good listeners and some even therpists (ha) makes it probably less noticable that I talked on about myself. Another thing that can cause some emotional distress as a direct result of ADHD is that you know you are different and then others’ frustrated responses which can sometimes be quite insensitive make it worse. I remember a kid with ADHD who was intelligent but veyr much classic ADHD, combined inattentive and hyperactive type, being told by his mother “don’t do it that way-that is a stupid way” When he was trying to do some math problems. That made him dislike math and feel inadequate. This was actually a very nurturing sweet mother, by the way. Well meaning parents just don’t get how to handle their kid with ADHD and the ways they struggle. Even though I was in advanced math classes all the way through school, numbers have this phenomenon of disappearing in my mind when I am trying to do mental math. I am not trying to be funny-it truly happens. So then I start over. IT is an attention thing, not a lack of competency, and it does make one feel “dumb.” If my kid has ADHD I need to research some ways that are commonly effective for math and I am almost certain it would involve all visuals.

OTHER ISSUES THAT MIGHT BE ADHD RELATED
In my own experience, I have found that my entire life had included insomnia. Not from anxiety usually and although the “time of the month” factor has held true for many women to lose some sleep the week before, this was a big part of my life way before I started. Like I said, I was given yellow pills at night and I think part of the purpose was to help me sleep. IT seemed to help, anyway. This is how me trying to sleep goes in my mind..(some event as a kid. not an anxiety provoking one, just random. Current event. “I wonder why this is this way?..” Trying really hard to sleep by doing focused breathing and imagining colors…”ice skating! so cool! I hate my ADHD! Awe man I should do a blog post abou ADHD.” haha that’s right, I first thought of this when trying to fall asleep on a kid-free mini vacation weekend with my husband.

DIFFERENT IS OK
I remember going to a psychopharmacology workshop when I was a therapist (currently a stay at home mom) and being shown an MRI or diagram (can’t recall) of a brain of someone with ADHD vs without and the wiring is so different. That actually made me feel more validated that yes, by golly its real and I can’t help it and it doesn’t mean I am slow or dumb-just different (No one has even ever though of me as slow or dumb, by the way, quite the opposite. I was called smartie or whatever. Yet with ADHD or other differences, we find ourselves having those feelings. Something to keep in mind to be sensitive and patient with those having these ADHD characteristics.)

I hope you enjoyed this or learned something! Let me know if you have some handy adult ADHD coping skills and you are welcome to share if meds have helped you as an adult.

Book review-Supporting Positive Behavior in Children and Teens with Down Syndrome

I recently bought and read a book at a recommendation in a Down Syndrome parenting support group, and I’d like to share about it because I thought it was great! The title is in the blog title here-Supporting Positive Behavior in Children and Teens with Down Syndrome and the subtitle is “The Respond but Don’t React Method” It is written by David Stein, Psy D. First off, for you to decide whether you’re up for getting and reading this book I will let you know this-it is a fairly short and easy read, it includes examples, and it is both specific and general. So, if you think that sounds like something you would be up for, I don’t think you’ll regret it.

This book is written by a psychologist, and having a social work background myself-it was not totally unfamiliar.It was a nice review and summary of all the basics of behavior antecedents and reinforcement and of what I have learned about Down Syndrome over the past 5 years. The main take-aways from this book that I recalled just after I finished reading it were as follows:

1) Emotional reactions are even more exciting to those with Down Syndrome than they are to most kids/teens. The author explains this more in regard to the brain makeup and the language processing differences and how people with Down Syndrome excel in emotions processing. For me, this was just a good reminder of what I already had practiced by coaching parents to do as a mental health therapist and as many parents learn as they go. I also try to remember that language processing issue and to quit being so wordy as I might be unfairly thinking that Ethan (my son with Down Syndrome) is taking in these mini-lectures. ( I try not to, but it’s what we adults do!)

2)Learning rules is NOT the time for building new language. I think since I’ve tried to have the mindset that “I need to have high expectations and let my son with Down Syndrome rise to that rather than sell him short on his abilities.” While that is true, I have found from this book that I have probably been using too advanced or too lengthy language when disciplining and correcting Ethan. It needs to be simple and with a visual, if possible, to set him up for success.

3)Preventive rather than reactive strategies are better to change behavior. This is always the ideal but thankfully he isn’t too “psychologist-y” (in the face of how most probably view them!)and DOES discuss handling discipline after the behaviors occur. Most of it is on changing things, looking for root causes of behaviors, and deciding when you may be labeling something a problem behavior that frankly, isn’t. Our big issue that made me want to buy this book is throwing (and no surprise-it pops up in the book and is discussed quite a bit in Down Syndrome parenting groups online!) My son throws not just to say he’s done with something (that actually decreased quite a bit once his language improved and even with signing before that around age 2), but he also throws for enjoyment…ALL the time. So it seems. Without having done a formal functional behavior assessment (which is discussed in the book), I could tell he does it more often when he is tired or in environments with less structure (at home… yay :/ ) Reading the book gave me some things to put some research and expert advice behind some things I felt was probably the “right” way to handle it (ignore the innocuous lightweight objects being thrown right in front of him-correct and substitute when hard objects are thrown especially at random trajectories around hte room or toward someone (and that is almost ALWAYS unintentional-but it IS very unsafe.) The author is realistic in discussing intervening for safety but makes good points that there really aren’t reasons to react and it even addressed my other concern about WHY Ethan throws so very often. It mentioned repetitive and even OCD-like behaviors being for comfort or to “unwind” and even mentioned teens with Down Syndrome watching the same 3 minute youtube videos on repeat or doing self=talk. (I was intrigued to read about teens toward the end of the book to see what things we might see crop up later.) It was comforting but I think some of Ethan’s throwing is still problematic because it is a safety issue.

In case readers wonder, I’ll go ahead and say it-bolting IS addressed in detail as is “stop and flop.” While there are some specific behaviors addressed, the book does not touch on everything because then as the author pointed out-busy parents probably wouldn’t read it! The principles given are helpful in providing a way that you as the parent can handle whatever behavior comes about to a certain point and sure you might end up needing some professional help temoporarily-for your child or you 😀 Overall I felt like reading it and understanding more about the way my son’s brain works and how the language delays he has might make him react differently to things helps me be more patient with him.

What i Expect for my Child from a parent to a new teacher

watermark backpack

I wrote this awhile back in thinking about what I want for my child’s education and the environment he is in all day. School is such a huge part of a child’s life-so much time spent there. Of course I have expectations for my second-born as well, but this was with my firstborn son with Down Syndrome in mind. Here is what I came up with:

1) I expect my child to be considered as much a voice and a student as any other kid. This means even if he is there part of the day, he needs a place to sit-and kids should know who he is. I have heard this story going around the internet that a boy at open house kept asking where his nametag was. So sad! I have also heard parents being similarly left out at open house situations. This is NOT ok.

2) I expect my child to be spoken to, not about as much as possible and for this to be instilled in peers.

3) I expect that if peers are treating my child like a baby that you as the teacher remind the student that “he can do that himself” or “he is too old for you to talk to hi that way.” (and yes, that second topic may require you to have a conversation with the student privately.) I am not satisfied with the notion that people can baby talk, lift/carry, or over-assist my child all they want so long as they aren’t bullying. I’m thrilled if the kids are nice, but I am raising my son to grow up as a 5, 6, 7 year old part of the school and community. I want him to learn , mature, and grow independent-all of which are harder for him than the other kids. He doesn’t need an excuse to slack off or become confused in his role.

4) When we as a family do have concerns or requests, I expect to be heard, not be treated like a burden or pest. I should not have to apologize. I didn’t create the hurdles and neither did you. Our job is to work tougher to help my child have a “level playing field” with others.

5) I expect open communication.
6) I expect you will get frustrated with my child like I sometimes do. That’s ok. Just don’t give up on him, please! We so appreciate you, teachers!
7) I expect you to try to understand my child. He has major speech delays, yes. But there’s so much he does say and you can unlock so much more to help him learn if you take the tie to listen and ask me what things he does and says often mean. HE signs, he says parts of words, whole words, gestures. HE has a PECS book.
8) Also, I expect you will help him communicate with peers. They are all each other’s “teachers” too after all, aren’t they?
9) I expect you to tell me what you need from me to help you be able to teach well. I know your job is overwhelming and me telling you what I expect may amake you want to roll your eyes (hopefully not but depending on the day-maybe so!)
10) I expect you to try. I ‘m not going to barrel into a parent teacher conference making accusations because my child isn’t writing or reading yet. There are SO many factors at play for kids with special needs, I know that. All we ask is you try. Love, Ethan’s parents

Tips to help the reluctant nurser

I thought I would compile a few tips I have gathered from my daughter’s reluctance to nurse for one reason or another-mostly from reflux which was at its worst in her earlier months.Recently, teething has caused her to be reluctant at times, so the same tips apply to teething nursers. Friends who had already had a baby with reflux who wouldn’t nurse due to feelings of pain and trauma from associating pain with nursing/bottle-feeding told me some of these tips. I found it helpful to join online support groups to see what tips were given there as well, and the same problems and questions kept popping up regarding babies reluctant to nurse or bottle-feed so I hope this helps mommies who have been struggling to get their babies to nurse.

 

ethan on mommy at home

tha

I’ll also include a section at the end about what helped us/doctor realize Katelynn had silent reflux and what symptoms to look for.

1)Bouncing the baby while nursing-This was the most helpful thing I was told to do, as Katelynn continued to refuse nursing fairly often even up to the age of 6 months when on two reflux medications. (or bottle-feeding, if the mother doesn’t think this causes too many gas bubbles.) It helped to be a distractor and often, it helped her fall asleep, which was often the only way she was comfortable enough to nurse (while asleep.) I have found in talking to other parents that requiring “dream-feeding” to nurse/bottle-feed is a very common thing for the little ones who have reflux.

2) Dream-feeding/falling asleep to start nursing-I know a lot of people have hang-ups about sleep associations like nursing to sleep and while I wish that wasn’t (almost) always the case with her up until just recently, it is absolutely the only way my baby would nurse for awhile. She was just too uncomfortable other times to want to nurse while totally awake and even if it had been hours or an entire night even-she wouldn’t nurse. You have to just get your baby eating and you can worry about all those habits later in my opinion. Babies will all have different degrees of sensitivity, so try what you like but just know that SO many parents rely on dream-feeding to get their reluctant (usually reflux) babies to nurse/bottle-feed.

3) White noise-again, the distractor
4) dark (sometimes important, sometimes not as much)
5) You want to keep tabs on a breast pump if you’re nursing and your baby is having days of not nursing well.

That’s all I recall using that was helpful-but helpful it was (after getting a good medication regimen!) I have to bounce her still sometimes if she is distracted away from home, if big brother is around, or she is teething.
Here are some of the things that I found are part of silent reflux that I either noticed before the doctor suggested Katelynn had it and also some things I read afterward that gave me those “aha!” moments when I realized Katelynn did the same things that other parents or doctors described babies doing.

1) crying after nursing, usually for a set amount of time, then feeling relaxed and happy (or maybe not..but with Katelynn its like a switch flipped.It was crazy!)

2) Pulling off the breast (or bottle) even when clearly hungry, by the cues and by the clock, attempting to nurse again but pulling away crying and

3) arching the back. With silent reflux, you have to look for this and other symptoms because you aren’t going to see the milk come all the way out of the mouth. The acid will rise and burn the esophagus and will be very painful and upsetting to your baby. Before any meds at all, Katelynn would scream nonstop for 30 minutes and I have not since heard her scream like that so thank Heaven for the meds! When we’ve tried to drop a medication, though, she does fuss and try to not nurse. It would last all day long and she was obviously hungry but wouldn’t eat due to feeling uncomfortable when eating, even when the tips given above were used. In two weeks we will be trying a trial of removing one of the medications (Zantac first for a week, then dropping Prevacid) so hopefully it will go well!

The happy ending to that story is that the trial went well and she outgrew it-yay! Currently I’m in the last stages of weaning/drying up. She is no longer nursing at all as of two days ago.

Ethan’s words at 4 years old-“Don’t underestimate me!”

image property of better than expected

image property of better than expected

For the first of the post, I am simply copying and pasting the list I made for Ethan’s therapists and teachers when he was actually not yet 4 years old. When I have time I will probably add to it to make it up to date right at age 4. I was curious to look and post this to 1) hopefully not lose it, 2)because I was asked how many words he can say at a doctor’s appointment the other day. I made a guess at “in the 80s, probably.” I was pretty close, and I’m sure there are many words I am missing in the making of this list. When I have said this, I have been met with pleasant surprise to what seems like doubt on the other person’s part (just one person to my recollection.) It made me want to double-check and I am satisfied I gave a correct answer..also, I’m not sure why it should be surprising. Honestly, I would have thought it would be the other way around-hoping that he could say more. He definitely has room for improvement which is why he qualifies for speech three times weekly. But hey-don’t underestimate him! It’s not so unbelievable he can say at least 80 words. And no, it’s not just words he repeats and doesn’t understand-he uses the words on his own! I’m not a speech therapist, so I don’t know the lingo-but its what I would call “self-directed speech” or something like that. He is using the words for genuine communication. Does he do this consistently in all environments? Not always. Maybe his mostly quiet nature at doctors’ visits is the reason for the raised eyebrows and asking me extra questions to be sure I’m not counting words he says on his own, rather than repeated words.

I might be misreading the intent, but it got me to thinking that we probably all do that a lot to people with special needs. If there is a shy or quiet child or adult, do you assume they don’t know what is going on or have as much intelligence? Probably not. (Or maybe some of you do?) So in the same way, we shouldn’t assume a child or adult with special needs doesn’t know what is going on or can’t communicate just because they are not chatting up a storm to you. There is a slogan I’ve seen on t-shirts and so forth that says “Presume Competence” and while it may not roll off the tongue as much as some other awareness slogans, it is so important for us all to remember.

WORDS ETHAN CAN SAY CLEARLY
-no , yay! , yummy, (or mummy) mommy, “oh, yea!” daddy sissy, nin nin papa, go, hat, baby, all done, arm, eye, pee pee, night ,”hi!”, me , “Here!” (Hands things to people) , knee , hip, hop, toe, hot, “hold” (requested holding sister ), cracker, ger ger ” for tiger (could be specifically tigger or Daniel tiger sometimes ), scissors , paper, “bye”, you, me, ball, “oh, wait!”, in, on (requesting turning on a battery operated toy for example-hasn’t used for placement (“it is on the table.”) has said “I poo poo” when he went and brought me the wipes.

NAMES-bitsy, –izzy, Bella (extended family dog names ), Emmy (aunt Emily),, “Zaza”for aunt Melissa , ” kiss” (Chris) danny (uncle), said “ther ther ” once for Aunt Heather. Ana and Elsa from Frozen

“Rick” for cousin maverick (sees his often lately but doesn’t say it on his own) , “bye”, (for cousin “Levi”), “, “omi” for Naomi , caught on fast-tried to say Santa and Jesus .” aw” and sign in forehand for me maw, “Vic” pronounces “bic” (grandpas name)
“Ree ree “-Henry the octopus , also refers to any form of octopus as ree ree right now.

Letters “e”, “t”, (says and also recognizes )

“APPROXIMATIONS”-Door,boat, dog , please, more, milk, drink, water, circle, square , red, purple , blue, nose, ear, teeth, treat , house , home, banana, pretzels , yes , book, “Ethan “, (only recently ) , popcorn ,” doh “for play doh or “shadow”. “Per per”-diaper, toot (only when asked to day it, not used on his own yet ) “pone” for phone , “poon” for spoon . Still calls both forks and spoons the name “spoon”. “Bow-” for bowl (drops the l) “key key” for monkey, “-ant” for elephant, drink (just “ink” also typically signs it), cheese, blueberry (for blueberry flavorted yogurt), yogurt, poop (poo)

SIGNING ONLY WORDS- (from wha I’ve seen )-water , hungry (only once ), thirsty (recent ), “thank you”, cold,

He does gestures to get me to understand what particular show he wants at times.

PRETEND PLAY-pretended to be pirate “arg!” Or rowing boat , by those were mostly repeating behaviors from TV show so idk if it counts as true pretend play ( ?), likes to pretend everything is a hat, pretends to be animals, acts out scenes from Frozen (knocking on door and listening if he hears someone sing the snowman song)

RECEPTIVE LANGUAGE/THINGS HE UNDERSTANDS-he can point out his elbow, Tummy, belly button , knees, hips, teeth, hair, tongue, mouth, ear eye, and “privates “, toe …said “Nin Nin” when he saw a driveway with the same gravel as his Nin Nin’s house