Tricking Children into taking medicine

First it was Alexander.  Mild fever, happy go lucky attitude, rash from the pits of hell.  Then Paul, mediocre fever, maybe a small rash, acting like he was in the pits of hell.  And finally Ben, mediocre fever, tired, no rash (yet.)

Hand, foot and mouth disease has overcome us.

And I’m just stopping in to say, if any of you has a child who will not take tylenol *ehem, Paul* you must play smarter, not harder.

Enter, the applesauce pouch.

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Squirt that medicine in there and let them drink it down.  This works for antibiotics, too.  You may need to squeeze out a little bit of the applesauce first, just to make sure you have room in there.

If your child cannot drink from a straw, just mix it and spoon feed it.  Just be sure not to mix it in with too much applesauce (or yogurt, or whatever) because you want them to consume the entire amount of whatever you prepare.

In the case where your child may need LOTS of medicine: dump it all in chocolate pediasure. Chocolate pediasure was how we got 2 yr old Paul to take all his tuberculosis meds.  That was four different antibiotics, each with their own unique and terrible taste, totaling about 30 mls of liquid medicine, everyday for 6 months.  It is in situations like these where we consider the “take on an empty stomach” thing as more of a suggestion, because it is more important that they take it any way that they can.

So, there you go.  Happy medicating!

 

 

Let’s talk about Cristoff

I have thought about this little guy many times.  Like Ben and Paul, he was born in 2011, so he holds a special place in my heart.  When I look at Paul and see how far he has come- how healthy he has become, how his interests, awareness and abilities have developed, how strong he is- I imagine how Cristoff could be.

In his older photos, you can see how alert he is, despite his circumstance.  He is clearly small and unhealthy, but he has a light in his eye.  This is much more than Paul had.

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Look at how bright his eyes are!

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He is clearly small and unhealthy, but alert!

But he has been in the orphanage for a long time- he is either 5 yrs old, or close to it.  These are photos from just last week:

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These photos are a warning to us!  He is dying before our eyes.  He is at the age when orphans leave the “baby house” and are transferred to a different orphanage.  The team advocating for him in his country tells us this will happen to Cristoff soon, and that where he is going is a bad place.  Just as many other orphans, Cristoff will not survive long after he is transferred.

I want to take a moment to decode some of his diagnoses, because he has a seemingly intimidating list.

Down Syndrome– well, we know about this one, don’t we?  Nothing to be scared of.

Profound intellectual disabilities/profound mental delay– They have no idea.  Really.  Yes, people with Down Syndrome have cognitive and developmental delay, but all this “profound” talk?  No.  He is living in an orphanage.  He is understimulated and neglected.  He is malnourished and unhealthy.  He probably has some institutional behaviors because of how he is treated.  All of these things impact how functional he is, and therefore, how intelligent he seems.  But you honestly won’t know anything until he is home for years.  He needs time to help undo the harm that has been done, to get healthy and safe, and in a place where he can actually learn AND show you what he knows.  So basically, you should ignore this diagnosis.  Just my opinion.

Eating disorder/Vomiting associated with other psychological disturbances– My best guess at what this means: he throws up as a stim.  Due to neglect, some kids rock back and forth, some kids chew their fingers, some kids bang their heads.  Paul shook his head back and forth and stared at his hand.  Cristoff makes himself vomit.  It’s not unheard of.  I think that is why they are saying that it’s an eating disorder/associated with something psychological, instead of saying that it’s something physiological, like a food sensitivity.  That’s not to say that it isn’t physical, because medical info on these kids isn’t always accurate.  Kids with low tone often throw up (Paul did this a ton!) because tone effects every muscle, including the sphincter that closes off the stomach, so until his tone improves, he may well vomit often.  It could also have to do with HOW they feed him.  For expediency, they are probably slicing open the top of a nipple so formula comes out quickly, making kids eat fast.  This alone could cause him to vomit at every meal (and yes, he probably still is fed primarily by a bottle!)  My point is, this is manageable.  Please don’t be frightened by “psychological disturbances.”  It sounds worse than it probably is.

Umbilical Hernia– Mayo Clinic tells me these are common and typically harmless.

Exotropia– a type of strabismus, so basically an eye that turns in, or having crossed eyes.  Depending on his type, this can be managed with glasses, eye patching, or possibly surgery.

Open foramen ovale– a little hole in the heart that doesn’t close up by birth.  Most people who have this don’t even know they have it.  It causes no problems or complications, and doesn’t need treatment.  When you adopt a child with Down Syndrome, you’ll get a referral to a cardiologist no matter what, just to have him checked out, so this really won’t be much of an inconvenience for you.

As if all that wasn’t enough good news for you, here’s some more: He has over $3,000 in his grant to pay for his adoption!  That’s a great start (and you could add to it, too!)  And I do intend to blog about the money side of things because I know that is intimidating.  But I will just say this for now: God will not be outdone in generosity.  Please pray about adopting Cristoff, and if not him, then someone else.  There is no shortage of children waiting for families, in this country and in others.

And lastly, pray for this little boy.  He is innocent and pure, just trying to survive.  He has lived through more trials and suffering than most of us, and he is only 4/5 yrs old.  Pray for him, his health, and that his family finds him quickly.

cristoff

 

Burnt Roof Roundup

So we’ve been talking about changing the color of our home.  There was a more lively discussion on facebook than in the blog comments and I’m not sure I’m any closer to choosing colors to test out.  But I decided to do some investigating in some nearby neighborhoods where more homes were built when ours was (2007).   There were quite a few homes with the same shingles as ours, though not all of my photos turned out well.  Plus, I was trying to be as discreet as possible so as not to appear creepy.  But here’s a sampling:

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Neutral.

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Another neutral with some rock accent.

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Not neutral. See how anything seems to go in my town?

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Enter two toned greige, with stone! Obviously this looks very nice, but this is also just a nicer home than ours all around.

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This is that same house as above. New construction with this roof…wouldn’t have been my choice but the house looks good.

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Kind of a sage color, and some beige-y type accent.

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It was rainy this day, but look! Navy!

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This was nice to see. It was like this dark gray with green undertones. It reads much more green in the pic. And it had been raining, so you can’t even see the roof color well.

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That deep green is not neutral.

So on that last one, I am wondering if a more saturated color like that green, or like the blue I am thinking, would draw attention to the roof, by contrasting it.

For fun, I did this:

YHL

This is the inspiration house for “newburg green.”  The (photoshopped) roof definitely competes too much, and I think if we did go blue, it would need to be muddier.  But I like muddy.

All the photos we took when it was rainy aren’t too helpful since you can’t get an idea of the roof color.  We could tell in person it was either the same exact roofing, or extremely similar, but the photos don’t show it.  Anyways, this post is probably useless because I’ll have to go look at these homes again.  But I did succeed in finding a blue home with this roof, I discovered a dark gray/green that looked quite nice, and I learned that most of the houses with our roof are neutral colors.  Which is unfortunate for me because our house is so blah architecturally that a neutral color really does nothing for it.

So…the saga continues.  I’ll have all Summer to decide since the painter can’t come until a few months from now anyways.  So, you’ll be hearing from me again about this.  Sorry in advance.

On the lighter, less interesting side…

Paint colors.

Thanks to my very smart and sensible in-laws, I think Ryan might believe me that we should do all the painting and staining on the exterior of our house.  It’s not a sure thing, but we should decide soon so I don’t string along these painters.  I discussed some thoughts I was having about this before.

But, the problem with that post is that the picture I was using to show some of my ideas (and awesome photoshop skills!) was pretty old.  It was basically right when we first moved in.  AND for whatever reason, our roof looked dark and gray.

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Oh, how I wish it was dark and gray.  But it is in fact, more akin to this:

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Thanks to Bert Roofing for that photo.  It’s called Burnt Siena and it might be my least favorite shingle color.  Here’s my effort to get you to see the color on my house.

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It was sunny that day.  And now we are all blind.  It does make the house look especially bad.  And it definitely illuminates how badly we need to stain everything.  And our plants are dead.  But it’ll all come to life, and I just bought some hanging flowers, so it’ll perk up.  In the meantime, sorry to the neighbors.

But see how the shingles are more brown?  Maybe that changes our color options, because those shingles aren’t changing color for a long time (like 20 yrs from now when the house will need a new roof).  In an even more unfortunate display of photoshop, here’s what I’ve played around with:

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Some kind of green. Even though I’m over green.

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Some kind of blue, which I prefer, but I’m not so sure with that burnt roof.

White houses with dark trim are pretty trendy around here at the moment, so, for kicks and giggles…

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The older pic, so we can see it without being blinded by the light.

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The newer pic so we can see it with the roof.

That is probably a bit too bold for my taste.  And definitely too bold for Ryan’s.  But I like to look at even the unlikely options, and since white goes with everything (even burnt sienna) I figured I’d give it a go.

Edited to add these two new contenders:

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A greige was suggested by a couple of people. To make it work, I needed to brown up the stain on the beams (and would do that for all the stain.)

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Greige, but two toned, as another possible option.

And I’ll add this one too!   A popular home blogger painted a show home “newberg green” and so that is a very popular color right now.  It’s really more of a type of blue than a green.  This is about as close to it as I can get…

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On the older pic of the home that doesn’t really show the color of the roof. This also has the wood more brown, which I think is possible.

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Here’s Newburg with the burnt roof and the browned up beams.

So does the blue really look terrible with the brown roof?  I tried to find some inspiration.  There wasn’t much, which doesn’t bode well.  But there were these, which are clearly not actual houses (except for the second one) but rather, other people playing on their computer as I have been:

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But burnt siena isn’t dark brown.  It’s weird brown.  But I also wonder- should I really care so much?  I had a hard time when we redid our fireplace because our trim and floors are lighter wood, but I really didn’t want a light wood mantle.  I really WANTED a dark wood mantle, but I thought it would look bad with all the light wood we already had, that can’t be changed.  So I kept thinking stone, but the stone options were terrible.  So I considered light wood, but I thought that would look terrible.

So finally I just did what I wanted and it looked fine and not at all weird.  (I just realized I never showed you guys that project.  Not that you care, but hey, I don’t have all that much to blog about now that the IEP business is through.)

So maybe I shouldn’t really care about the shingles, and as long as I pick something that doesn’t obviously and completely clash with it, it’ll be fine.

“Thoughts?  Comments?  Deeper wisdom?  Further insight?” -Fr. Dan Pattee, from a million years ago

Our Follow Up IEP meeting

This second meeting went so much better than the first.  About a million times better.

So many variables changed- Ryan was there, the special ed director was there, the group was significantly smaller, members of the team who know Paul were present and vocal-so it’s hard to say what exactly made the difference.  It was probably just a winning combination, though Ryan said it’s because they knew he wouldn’t be pushed around like “some woman.”

He was kidding.  He’s not a jerk.  Promise.

Anyways, for speech, we increased minutes from 60 to 90 per week.  This will be 1-on-1 with a SLP- 30 min, 3x week.  We will also have 60 minutes (30 min, twice a week, or maybe 15 min, twice a day, for two days) dedicated to communication goals and oral motor stimulation.  I will need to read through the meeting notes again to be sure this is explained he way I’d like it, but I think it will be fine.

Nobody seemed to have a problem with this.  I had a letter typed out with my reasons, the SLP added her thoughts and suggested the same thing as me, and it was done.  Easy.

The interesting conversation came when when we started discussing how many minutes Paul would be in regular ed.  I did not prepare for this portion of the meeting as much, but apparently the bit of reading I did do sufficed.

I think the tendency in special education is to fall into the typical routine- all the kids go to the special ed class first thing to put away their backpack, then to reg ed for circle time, then back to special ed for reading instruction, then reg ed for recess, then special ed for fine motor work, then reg ed for snack, so on and so forth.  Everyone is just on the same “track.”

And from a logistical standpoint, I completely understand this.  I have no idea how special education teachers do it because it’s complicated enough as it is.  And if every parent advocated for the most inclusion possible, and for something truly individualized (which is their right by law) I’m not sure how it would all work.  Certainly, the expenses would skyrocket because of the need for more support staff.

But, just like the SLP’s caseload, that’s really not my, or Paul’s, problem.

So when they were trying to explain to me how Paul needs to go to the special ed room for instruction in reading, my thought was, “why?”  He doesn’t even have a reading goal.  Maybe he will have one once the new team gets to know him; we’ll deal with that later.  But right now, his goals are not academic.  His self-help/independence, and social/emotional/behavior goals are related to being independent in the classroom, learning routines, attending to tasks, lining up/safety.  He has sensory-motor goals that can be worked on just about anywhere, and his speech/language and communication goals will have lots of dedicated time, and can also be worked on pretty much anywhere.

Truthfully, aside from pull-outs by specialists (mostly speech), everything can be adequately addressed in regular ed, in fact, I would argue that most goals can be BETTER addressed in reg ed where he can have peer modeling.

So we had a really good conversation about it.  One of the concerns was that if he was in reg ed from the start of the day at 8:30 for a whole hour until some fine motor work in special ed, it would be a long time for him to stay engaged.  But at the beginning of the year, that will be hard for all the kindergarteners, so can’t he participate in that evolution that happens when kids are bouncing off the walls, to when they can sit and attend?  And even if he still has a hard time, can’t he have 5 minutes to take a walk, jump, do some chin-ups like he loves to do?  How about practice taking turns by rolling a ball with the aide (it’s not as good as taking turns with a peer, but it serves many ends- bilateral coordination, turn taking, with the added bonus it’s a preferred activity to break up that hour of class.)  Or if we must, could we take 15 minutes with whoever will be consulting with the SLP, pull him into the hall, and do the oral motor work and practice communication goals?

That first hour of the day is going to be his best hour, when he is ready to tackle the day!  I told them I want to presume competence with Paul.  If it doesn’t work, then we can adjust and take him out, but let’s begin there.  As they had it, he had circle time, 2 difference recesses, and a snack with regular ed.   I want him to have meaningful time and interaction with his peers, and it wasn’t going to happen.

Finally, after more discussion, I just said, “His placement is based on his goals, and all of his goals can be met in regular ed with the right supports.  That is the least restrictive environment and we should start there.”  Keep in mind I was literally asking for 30 more minutes in reg. ed per day; I’m not talking about asking for a 1-on-1 all day everyday.

And then the special ed teacher started to explain, half to me and half to the administrators, how she doesn’t know what kind of para support she will have next year and how that makes this difficult because Paul will need someone with him.

And I really sympathize with her, because that does put her in a bind.  If she doesn’t have the support staff she needs, her job will be impossible.  There are situations in which IEP’s might not be followed because there are not enough hands to do the work.

But Paul doesn’t need to bear that burden.

So, they added the minutes!  We’ll see how it goes, I guess!  I think I will need to be present at his school in the Fall.  I’m not sure exactly how that will work out.  I don’t want to impose in the slightest, but I also know that I’ll need some time to observe to see how things are shaking out.  We will have another IEP meeting in October once class schedules are finalized and the new team gets to know Paul.

Of course, I am pleased that we got two things into the IEP that I was hoping for, but I really just enjoyed the collaboration that we had to get there.  I joked with Ryan that the first meeting we had should have been a lot shorter, because everything I suggested was basically met with a “no” or some moderately condescending explanation of why what they had is the way it should be.  So today, even if I hadn’t gotten what I requested, but the conversation was had and we acted like a team, it would have still been a win.

I’m hoping next time it doesn’t take a second meeting to get to that point.

A festivus for the rest of us.

I affectionately call the IEP Parent Letter of Attachment “The Airing of Grievances.”  It’s basically the, “I brought these things up, nothing changed, I want the record to state I’m not thrilled and that this isn’t over” document.  Because you’re not going to die in every ditch.  I’m going to die in the speech therapy ditch, but not the OT goal ditch.  Especially when I think I’ll be able to rectify that at a later date.  And, sad to say, I can’t fight for inclusion and speech therapy, so speech is going to win out.  I intend on having him do full day kindergarten next year, and I’ll probably fight the inclusion fight then.

Anyways, here’s the “Airing of Grievances” I submitted today:

Parent Letter of Attachment

We, Ryan and Megan Stout, the parents of Paul Stout agree to this IEP, with the exception of the number of weekly minutes for speech services.   We have arranged a second IEP meeting to further discuss this matter.

We would like to note the following:

  • We are understanding of the fact that this is a busy season for IEP team members, but would prefer that no one leave the meeting early. In the future, we will request that a 2 hour block of time be set aside for Paul’s IEP meetings.
  • We did not have time to go over the IEP notes because another group needed the meeting room. I would like to note this: in response to my request for more minutes of speech for Paul, I was told that because of the caseload of the speech therapist, and the fact that she is only at Emily Dickinson for 2 days a week, increased time was not possible. In the IEP notes, it is worded as follows: “**** explained the limitations of hours of services, available overall.”
  • We do not feel our concerns with the sensory motor goal that measures bilateral coordination by rolling a ball, stringing beads on a shoelace, and pulling apart/pushing together pop beads have been adequately addressed. At home and in private occupational therapy, Paul can complete rolling a ball and pulling apart/pushing together pop beads; stringing beads is an emerging skill. He may have difficulty doing these things in a classroom setting due to distraction or boredom of the task. As the team at Emily Dickinson gets to know Paul, we may revisit this goal and replace these measurement tools with tasks that are more challenging to Paul and would help him be more functional in kindergarten.
  • We believe that the regular education classroom would be the least restrictive environment for all the self-help/independence goals, as well as the social/emotional/behavioral goals. Goals in the area of speech/language and sensory motor could be met in the regular classroom with modifications and supports. We also believe Paul would benefit from peer modeling in behavior, attention, social engagement, communication and speech/language found in the regular ed classroom. We will be monitoring Paul’s progress and may seek to have him spend more time in the regular ed classroom.
  • We would like to make the most of the time that Paul is in the regular ed classroom. Possible steps to take to that end include pairing with a student before learning a new task or transitioning to a different setting; facilitating socialization at snack, recess, lunch, and breaks; creation of a “circle of friends” group which rotates a few peers to “buddy” with him during classroom time, snack, and recess. We would also encourage the opportunity to educate peers on Down Syndrome and Autism, as well as some simple sign language that Paul (and others!) use.
  • We plan to have Paul do a second year of kindergarten on a full day schedule.

 

Mtg #2 is scheduled…

I ended up sending out an e-mail that summarizes what was said in the meeting (the denial of services due to caseload and how key people were not present for the discussion) and cc’d the dir of special education.  I included him because he really should be made aware of what his staff is saying, especially since it was so egregious.  He responded that he’s happy to come to our next meeting, which wasn’t my aim, but is probably a good idea for both of us.

I’ve decided that I need to put my request in writing, and include bullet points to defend my position.  My understanding is that if I put it in writing, they need to put their official response in writing, which will hopefully make them actually consider my proposal.  Plus, then my case will be laid out and I won’t have to depend on my own memory during the meeting.

I think the most disappointing thing about this is that it calls into question whether or not certain members of the IEP team actually care about Paul’s needs.  When a parent proposes something they believe his/her child needs, and the immediate response is basically, “No, the caseload is full.  Kids only get this” it seems like others are just thinking about the administrative side of things, and not about the needs of the child.  They don’t need to automatically believe me that Paul needs a certain service, but if they cared about Paul and they valued me as a member of the IEP team, the correct response would be, “Why do you believe he needs additional time?”  And then the conversation begins, and the collaboration, and the creative problem solving.  And it would be awesome.  Hopefully we’ll get there sometime.