Taking the Scenic Route

The worst day

15th August 2007

The worst day

I almost lost my dad today.  They did emergency surgery to replace the valve.  The mitral valve wasn’t working.  I think one of the supporting muscles failed due to heart damage, probably from the initial heart attack, but exasperated by the surgery.  It is a rare complication. 

I missed seeing him by three minutes.  We got a message to the OR nurse and she was able to tell him that I made it and I love him right before they put him under.  I didn’t get to see him, but he knew I was there and that was the important thing.  Mom and Joy said that they could see him failing right before their eyes as they were waiting for the surgery.  He wouldn’t have made it even another few hours without the surgery.

I saw him in the ICU for a few minutes before I came home.  He was asleep and they are keeping him asleep through the night.  He is still intubated, and they haven’t gotten the blood thinners balanced out yet, so his wounds were leaking some.  They had given him some blood products already, but it was still within a reasonable range for what he had been through.  They had cleaned him up as much as possible, and they were going to put the restraints on when we left because he is so strong and they don’t want him ripping out all the lines out if he starts waking up.  They are going to keep him as comfortable as possible overnight and hopefully be able to remove the intubation in the morning.  According to the nurse, he was looking as good as could be expected.  The nurse who is sitting with him tonight has 12 years of experience and seemed pretty sharp.  He seems to be in good hands.

His hand was cold when I held it.  He was yellowish from the antiseptic (his face was a good color, but the rest of him was odd colored to me).  I don’t like seeing my dad like that.  I pray that I won’t have to see him look like that again for many, many years.

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14th August 2007

Tuesday August 14, 2007

He has a leaky mitrol valve.  They are going to put in a mechanical valve this afternoon.

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14th August 2007

Tuesday August 14, 2007

First, the very minor one:  The teacher was not sure what to do about the schedule since they aren’t really doing a schedule for the first day, and don’t even know for sure which classroom he will be in until that day is over.  In the interest of cooperation, I am not pushing.  It is one day and I will be there to help Zane navigate.

The far more serious glitch is Dad’s recovery.  He is awake and talking and logical, but one of the chambers of his heart seems to have higher pressure than it is supposed to.  They are going to put a camera down his throat this afternoon and take a sonogram type picture (something like a TEE) and see what is going on.   

eta:  TEE:  http://www.heartsite.com/html/tee.html

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14th August 2007

Tuesday August 14, 2007

He ended up with a quadruple bypass instead of a 5 or 6 way bypass, but they did find some damage to the heart while they were in there. His prognosis looked good. Before I left, he was able to mumble “I love you too” to me, and I heard that he was having a logical conversation within an hour and a half after I was taken home.

It was, without a doubt, one of the longest days of my life. It was so hard seeing him in so much pain.

Thank you guys for all your support through this.

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13th August 2007

Monday August 13, 2007

Monday morning one of mom’s friends is picking me up to take me to the hospital so I can see Dad and be with Mom during his surgery.  Another friend is taking me home in the evening.  Our car doesn’t work well enough to trust it driving that far in the heat.  I am so very, very thankful I don’t have to chance the trip in the heat.

Tuesday I have another meeting at the school with Zane’s teacher and possibly the ST.   Zane has therapy that afternoon. I think the “meet the teacher and have ice cream” party is that night at the school.

Wednesday is Zane’s OT

Thursday he is being evaluated for Hippotherapy.  It is also the first day of school for Zach.

Friday Zane (and I) go to his orientation day at Kindergarten.  Full day Kindy, oh boy.

I don’t think his ST at the university starts for another week or so, but I could be wrong.  I guess we will get a phone call soon to let us know when that starts up.

I was able to find a few decent t-shirts, capris and shoes for the upcoming weeks.  I realized that my wardrobe was not nearly sufficient to be seen by somebody 5 days in a row, for several weeks.  I only had one pair of jeans, and a few passable outfits, but the core of my wardrobe was men’s clearance sale $3 pajama pants from ON that are several years old, and all of my oversized men’s t-shirts had holes and stains.  It was time for me to get a few things. I still need to dye my hair sometime this week so I don’t get called Grandma.

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10th August 2007

Friday August 10, 2007

Today he was moved out of the ICU into the regular surgical floor.  He is doing well.  He will have surgery on Monday, and will probably be in the hospital about 3 days after that.  Mom is trying to find a hospital bed for him to put downstairs for a few weeks when they come home so he doesn’t have to climb stairs, and since he is going to have problems getting out of the waterbed.

Mom said today that God is really taking care of her.  She keeps having people ’show up’ exactly when she needs them.  Like the friend that stopped by just as she started down the hall carrying the too-heavy load as they were moving to the new room, and carried the things for her, and the friends that showed up in the cafeteria when she was having lunch just when it all finally sunk in and she was feeling totally lost and overwhelmed.  She turned around and there were two close friends who just held her and let her cry and support her. 

Every day she sees the evidence of God’s hand through this, in both the subtle and the critical.  God is really holding her in the palm of His hand right now.  She feels the blanket of prayers and it is really making an impact on her life. Please keep praying.  It is helping.

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10th August 2007

Friday August 10, 2007

Besides the “big notebook” that has all of his therapy reports and evaluations, I walked into the meeting with the list below. (had other info too, like how to pronounce his last name.  hee hee)  I wrote it quickly, and I was actually sort of surprised when I read it at how much more of a handle of how to help him effectively than I used to.  I have really grown since this whole thing began.  I was a little anxious about giving them a list like this because I suspect it would scare the poop out of his teacher, but it was more important that she be aware of some of the basics. 
 
I used the “Silence of the Lambs” theory of writing it…(from when the parents are pleading for the kidnapper to release her and keep using her name to encourage him to see her as a real human instead of a set of features, etc) and used his name as much as reasonable to make sure they hear that he is a person and not just a set of behaviors.  Yeah, I am a nerd too.  lol.
 

Zane needs to understand what is going to happen. He gets very anxious if he doesn’t understand what is going on. A visual schedule is crucial; it helps with this anxiety and helps his behavior. If he doesn’t know what is expected of him, he will start making things up and is more prone to escaping.

Zane needs concrete, specific instructions. Instead of saying “time to line up”, tell him specifically where to stand. A physical marker that he stands on (graphic of footprints, even a piece of colored tape will help) helps him understand. He might also need a prompt to ‘stay sitting’. He will sit when asked, but he might not infer that he is supposed to continue to sit throughout an activity unless it is said explicitly. Instead of saying “hold your horses”, say “wait”. Phrases like ‘you have ants in your pants’ might prompt him to try and find them. Colloquialisms are lost on him.

Zane’s biggest strength is pattern-recognition. His most effective way to learn is seeing patterns in what he’s learning. This also means that he may see unintended patterns. An example of an unintended pattern is in asking him to match things, and him matching something else in the picture (e.g. you expect him to match the flower colors, but he instead matches the similar flower pots by shape; you have a set of actions that follow a song, and he includes inadvertent movements, like head scratching, as part of that set).

Zane has intense drive for completion/closure. If there is a project in the classroom that isn’t going to be completed at a particular sitting, then he needs clear instructions like “finish coloring this circle, then we will put it away”. Give him a clear end point. He might not be happy if he sees things left undone, but he can cope with it better if there is a clear end point for that particular time. He will also try to close doors/drawers if they are left open. If he has hit his limit and can’t seem to figure out how to finish something, he might need help to get to that endpoint. For instance, if he is to write something and he has hit his threshold, you might need to write a dotted line for him to trace to finish it. If he can’t finish it, even if it because he is worn out or can’t focus, he is likely to meltdown.

When Zane gets overwhelmed: He doesn’t tend to lash out, he tends to ‘check out’ instead. He goes inward and doesn’t respond. He gets really quiet. He can usually be pulled back into the world with some sensory input. If you see him crashing into people (doesn’t really happen very often any more, but it might) he isn’t being aggressive, he is seeking input and doing it in the only way he knows how. He can’t verbally tell you he needs it, but this is a sign he has gone well beyond his coping ability.

Zane is “deep pressure seeking/light touch avoiding” To help him focus, he sometimes needs sensory input. The most effective things for him are deep pressure activities that help his brain get back in touch with his body.

Some things that help him:

  • Firm hugs, especially while standing behind him, putting your hand on his chest and hugging him towards your body to sort of sandwich him as much as possible.
  • Jumping. We use a mini trampoline at home. It is one of the most immediately effective things for him.
  • Stomping, pushing against a wall, hanging from something, swinging, banging against something (whole body running into a wall), swinging, are all examples of things that give good feedback to his joints.
  • If he gets dirty (light touch avoiding), he might not be able to handle it for very long and will be running to the sink to clean his hands, or trying to find a towel, or wipe it all over his shirt. Paint has the same effect as mud.
  • When you use your hands to guide him, if he starts squirming, use just a little more pressure in your hands. It sounds backwards, I know, but he can get a bit unnerved when people lightly touch him or just brush against him.

Zane has motor planning issues. On a basic level, bad coordination on things he doesn’t do often or complicated activities. He might be able to imitate somebody (he usually tries), but when it comes to motor planning, he often has to be shown by doing it, with a teacher/helper physically moving his limbs, etc, the way they are supposed to go. Often it just takes one time of giving him enough of an idea to figure it out from there, but there are times he just won’t get it any other way. He has difficulty with things that require finger dexterity/fine motor, like buttons/snaps, lacing, sorting tiny things (his brain knows where they go, but his fingers might not do well at actually moving the things) or putting together puzzles with small pieces. (can do 100+ puzzles since he was 2, but only if the pieces are big enough)

Two relevant specific things he has done a lot of work on:


First, using a pencil with the correct grasp (tripod grasp) instead of the palmer/painter-style grasp. Please be picky about this. He knows this and we need to make sure it is generalized to all settings because unlearning bad habits take a huge investment, where just insisting on what he knows takes a short comment. He can usually correct the grasp with just a verbal prompt to “fix fingers”. If he is having problems correcting it, you can hold the pencil out for him to grab and he can usually do that. If he is still having problems doing that, he is probably nearing his threshold and you should keep your eye on him. He might also need a prompt to put his “helper hand” on the paper to hold it still while he is writing.

The second thing is holding a scissor correctly. He might need you to help him get the fingers in the correct holes, but this is greatly improved and he might be able to do it on his own. He sometimes has a rough time figuring out how to hold the paper and cut at the same time, so he might need a quick hand over hand to show him where to put his ‘helper hand’ to hold the paper while cutting.

Zane has a hyposensitive mouth. He might ask for hot sauce to put on his food, or overfill his mouth (he usually doesn’t do it to the point of choking on the food any more, but considering this used to be a pretty big issue, I figured I should mention it). He also might mumble, sound like he is talking with a mouthful of marbles or generally have really poor enunciation and need to be prompted to ‘use a big voice’ or ‘talk louder/slower’ to be understood. He also does a lot better with a straw than he does just drinking out of a glass.

Zane is not potty trained yet. We are going to need to discuss how to handle this. We are working very hard on this issue, but it hasn’t clicked yet.  Most of his pants don’t have fasteners to help with getting them on and off, but most of his jeans and some of the other nice pants have buttons he may need help with. He can undress himself, and if it is just a wet pull-up, he can put a new one on. He will have to either lean against something or sit on the ground to get it back on (motor planning issue again), and most of the time he gets it on the ‘right way’, but you probably want to check to prevent problems later.

Zane has a sense of humor. The most common way he demonstrates it is to purposefully give a wrong answer and then watch for your reaction out of the corner of his eye, usually with a sly smile on his face. Watch for this when you are trying to test him.

Zane’s Strengths

  • Extreme visual learner.
  • Very strong spatial skills
  • Sees patterns easily. If he has difficulty understanding verbal instructions, he will likely get it if he is shown several examples, especially in rapid succession.
  • Gentle soul. He is almost always compliant. If he doesn’t seem compliant, he probably doesn’t understand what you are expecting of him or is having a problem with some sensory issue that is hijacking his ability to focus on what is expected of him.
  • Very strong problem solving skills. He uses his problems solving to get around his language delay and can come up with some rather novel approaches sometimes.
  • Loves music. Might show little affect when he is presented with something new, but is likely to be really enthusiastic when it is presented the next time.
  • Can read some, both by sight and some by phonetic. Can count, can do some addition/subtraction, and is starting to add/subtract fractions. In fact, he already meets many of the requirements for Kindergarten graduation on the academic front, but will have difficulty producing it because of the social requirements inherent in a school setting.
  • Can often do the more difficult tasks with much greater ease than things that most of us consider simple, but struggles with the ‘simple’ tasks.
  • Is usually much more aware of his environment than you would suspect by looking at him. He is probably aware of things that don’t even ‘hit your radar’ like the sound of the lights, noises in the hallway, the shampoo the kid next to him used, and the pattern of how things are hung on the walls.
  • Is often hypersensitive to emotions around him. He is often the physical embodiment of the emotional charge in the room.
  • Very, very competent on computers. His dad teaches computer science at *Zach’s school* and computers are a very big part of our lives. Works mostly on PCs, but has been introduced to Macs very briefly at Speech Therapy.
  • Can write, but often does them functionally incorrect.

  • He likes: Snoopy, Charlie Brown, Mario, Yoshi (a Mario Brothers character), Mickey Mouse and the traditional Disney gang (not into the newer movies/characters, but the ones us older folks grew up with), and is familiar with most of the Nick Jr. Characters, especially Dora the Explorer. Also likes Thomas the tank engine, Penguins (especially Tacky the Penguin) and books in general. Likes spicy foods, including hot sauce. Likes marble runs, blocks, trains, cars, building activities, glue projects, and playground equipment.
  • He dislikes: Vegetables. Starting to eat tomato sauce, but in general, won’t eat veggies. Not really liking mushy food/textures. Prefers to use tools (utensils, paint brushes, sticks) to deal with unfavorable textures than to use his fingers.

He constantly surprises us with his abilities. He works up (or down) to expectations, so we often push him to try things outside his comfort zone. You might never encounter some of the things I addressed, but I wanted you to be aware of the possibilities so it doesn’t take you by surprise. He isn’t totally unlike a typical kid, but a lot of his experience in the world is just more extreme than a more typical experience.

He is probably going to seem much more severely affected by the ASD symptoms the first few days, until he figures out the routines and expectations. Once he understands and can predict what his day is like, he will come out of his shell and you will see a lot more participation and enthusiasm. He really is a joy to work with, but it can take a bit for his true personality to emerge.

I am Jennifer, a SAHM, and my husband, Zach, is often home also (he teaches several of his courses online, so his on-campus requirements aren’t what a typical instructor has). We are very willing to help in any way we can, and can be at *school name* in short order if you need us there to help navigate a situation. I know that this in not the ideal situation, especially until the IEP is in place, but I have faith that it will work and am willing to anything to help make this process as smooth as possible. Our phone number is ***-***-**** if you would like to speak to us.

I hope I didn’t inadvertently say anything stupid that is going to hurt his IEP process, but I am not going to lie about his abilities (like gloss over how much he does know in an effort to ensure he isn’t kicked out of services.)  I think he has enough other issues that he shouldn’t get kicked out of services anyway, but it is always a fear of parents who’s kids are hyperlexic or, at least, without severe cognition deficits.

The meeting, overall, went well.  I wish I would have had more time to talk to the ST, but the others seemed nice, competent, and willing to do what it takes (within their power) to make this work.  I did have to fill out almost all of the paperwork yet again.  (the third time) I am so irritated with the other social worker.  She really did a rotten job.  She lost all my paperwork twice, and it appears that she didn’t put all of the copies of his evals and progress reports in his folder either.  I suspect they got thrown out, along with my other paperwork.  I am glad I don’t have to deal with her any more. 
 
After talking for a bit, and it became evident that they were going to move the whole process to the IEP along as fast as possible, and they were doing everything they could to make sure he was evaluated thourally, I asked if it would be possible to act as his para since there are no paras in the room and no way to get them at this point.  I didn’t think they would go for it, but I had to ask.  They said yes.  It will be a lot of work, but I don’t have to worry about his safety, how he is treated, and can help transition him, probably better than anybody else could.  (except, of course, if Zach were doing it).  I don’t have to worry about a lot of things that I was worried about. 
 
It is inconvenient, to say the least, but it is do-able.  I guess I should get some shoes that I can stand in for 8 hours and some shirts and pants that fit and are without holes.  Suddenly my “I can do without decent clothes” has changed to  ”I need a few outfits so I don’t look like I am homeless”  I am going to see if Zora can be watched on Mondays and Wednesdays by my cousin’s nanny (they live fairly close), or see if there is another place to take her during those times, or Zach might drop his class or just not attend for a few weeks.  His teaching doesn’t require him to be on campus, but he does have a class on the schedule as a student.  I am not sure how all of this is going to work, but I suspect things will fall into place, either a way I have predicted or in a surprising way that hadn’t occurred to me.
 
There is more to write about, but I will update a bit more about school later.

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9th August 2007

Thursday August 9, 2007

I had to resist the urge to call him “daddy” and start blubbering when I heard his voice.  :lol 

He is doing as well as possible given the circumstances.  He went through some testing this morning and found that there wasn’t any damage to his heart, that it started trying to do a bypass on it’s own, and that he will most likely do surgery on Friday or Saturday.  He said he feels pretty decent and agreed that he thought a lot of his ‘chest pain’ was his lungs, instead of his heart.

He was also joking that he was going to have a mess to clean up in the yard when he got home.  (he runs the township grader) The recent rains combined with the “traffic jam” in our yard last night probably left big old ruts in the yard.  Besides the church council members that were there, both small towns near us responded with the volunteer fire departments and EMS, then both had ambulances show up.  (the farm is right on the border between the two, but it is also probably as much because they are volunteers and small towns and help each other out)

Shortly after I heard about the heart attack, in the nervous energy that only comes from emergency situations like that, I called the Developmental Ped’s office to cancel his appointment on Friday.  Hopefully by cancelling early they have time to fill the slot with their waiting list.  I was already concerned on how I was going to fit everything in that I had to get done at the school, and then with the news I didn’t know what the next few days would bring.  The appointment was to discuss his Spring allergies, his medicine reaction, and some other issues, but nothing super pressing, so it made sense to reschedule given the circumstances. 

I just got off the phone and I am meeting with the principal, the school psychologist, and hopefully his teacher tomorrow morning.  So much to do before then. 

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9th August 2007

Thursday August 9, 2007

It was a heart attack. 

The blockage broke down like this:
1 is 100% blocked, and that is the one that was causing the symptoms
2 are 90% blocked
1 is 70% blocked
1 is 60% blocked.

It is a miracle he didn’t have a much more massive heart attack than he did.  He will be undergoing tests tomorrow and will have either a 4 or 5 way bypass on Friday.

The doctors who are caring for him are the same doctors that cared for my maternal grandma when she had her heart surgeries last year and they are very good. 

They can’t believe he didn’t have severe pain, given the blockage.  It speaks of his high pain tolerance.  I suspect that he had pain, but attributed it to his lungs since he has a lifetime of severe asthma.  (also probably why his pain tolerance is so high).  His attitude is really great, and even the nurses are commenting on it.  Everyone is predicting a really positive outcome with this whole situation.

My parents 41st anniversary was yesterday (technically, the day before yesterday since it is past midnight).  I can only imagine how lonely tonight is for my mom.

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9th August 2007

Thursday August 9, 2007

Got a call. He is awake, talking, and describing his pain as a “2″ on a scale of 1-10. He waved at my brother, wife and the minister in the hallway as he was being taken from the ER to the cath lab. They are going to stick a camera on a wire in through his groin to look for blockage. It will probably take an hour and a half, so I might not hear anything back tonight unless I am still up that late. (I probably will be, but my mommy told me to go to bed. lol)

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  • Zane's age

  • Zane is 22 years, 4 months, and 11 days old
  • Zora's age

  • Zora is 18 years, 4 months, and 15 days old
  • Random Quote

  • Without enough sleep, we all become tall two-year-olds. — JoJo Jensen, Dirt Farmer Wisdom, 2002

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