We have a swimmer!

I picked the Busy Little B up from school the other day and it was such a nice day, in the fifties and sunny and warm enough to not need your coat.  We went and filled up the tank and took the long way around to B's OT appointment to enjoy the sunshine.

He had a really good OT session--they worked on an activity that is normally a source of frustration but he stayed cheerful and focused and determined to defeat the activity (everything right now for him is in terms of conquering and defeating.  He wants to be a knight).  The work they are doing on multi-tasking is really helping at school!

Miss Iz also had a good therapy session and talked about what had  been happening since her last session (she often feels anxious talking about the highs and lows of her week and refuses to participate.  We do what was the high point of your day and the low point of your day at the dinner table periodically to try to get her comfortable with the concept and it seems to help).  The "bad" days tend to stick out but if you really look at it, her emotions and responses to it are much more even and appropriate overall than when we pulled her from school.  Progress is always good :)

We went home for chores and dinner and then were off to swim again :)  This session of swim is almost over--they are going to be so sad when it ends.  Its great for them but I must admit I won't mind having my evenings back again ;)  W went to nursery and the Big Kids and I went to the pool and Iz had an awesome lesson!  Her instructor said if she keeps this up, she will graduate to Level Two.  Iz is SO EXCITED.  She wanted to master the skills in Level One and she did it :)  The Super Kid is *so close* to level two but he's still too timid and hasn't mastered floating because he's afraid of sinking.  Iz got over that fear and ticked off all the boxes to move on.  Poor B.  He's trying so so hard but he's still just too  uncoordinated to pass level one.  He's gotten better but there's a reason he's in OT twice a week to work on being able to process and execute multiple instructions at once :p  But I'm so proud of him because he keeps trying and improving and doesn't give up.

Emotional Regulation

I was really proud of Miss Iz yesterday.  She did such a great job handling emotions!  She's been dealing with pretty severe anxiety ever since her open heart surgery at seven months old and has been in and out of therapy since shortly before she turned two.  As she grows and matures, the manifestation of her anxiety changes.  Adding an anxiety med last year helped as well and we moved from her very long selective mutism stage into what I call the "Fight or Flight" stage.

One of the things we deal with is the fact that regular ordinary frustrations for her age can often kickstart the anxiety and then we go from 0 to 300 in a very short amount of time.  She does OT as well as meets with a therapist to help and she and I do a lot of work at home.  She had been making big improvements and then school just set her back to the point we pulled her out.  She's made great strides again and those fight or flight outbursts are getting further and further apart.  Yesterday morning W had OT and then we ran errands to finish off our grocery shopping for the weekend and next week.  She did awesome navigating the crowds (sometimes just having so many people around puts her on high alert and it takes very little to tip her over the edge), she handled being told "no" to things like a champ, she listened to instructions fairly well.  She needed some reminders here and there but nothing escalated and she chose appropriate ways to express the emotions she was having.  She used her words, did her breathing, when we needed to we simply moved together to a quieter part of the store, we talked things out.

We talk a lot about how we all have big emotions and that that is okay and normal and we are supposed to have big emotions.  But we have to choose how to handle those big emotions--we can't hurt others or ourselves or destroy things.  We talk a lot about making safe choices and that even grownups have to still keep working on things, too.  She may not always be in control enough to make the choices she needs to (which is why she's homeschooled now--the school was unwilling to step in when needed to keep her and others safe.  She knows that if she's out of control, I'll step in to keep her safe.  She doesn't like getting "tight hugs" when she's upset but she's a smart kid and when she's calm, she can tell you she needs them, even when she can't ask for them), but she's working on making them a habit so she doesn't have to think about them.  We practice when she's calm and she's applying her calm down strategies to other people in the house.  I was irritated with W this morning because he kept trying to climb on me and almost knocked my coffee over and I asked him to get down and go into the living room--Iz came over and starting rubbing my back in long firm strokes and told me that pressure input is really good for staying calm when you start to get mad LOL (Iz's response to W irritating her is usually screaming and crying and we are working on that because the loud wailing won't fix the problem--using  her words will be more effective because then even if W doesn't stop because he's two, I can hear what the problem is and come help.  I used my words like she is supposed to tell W to stop and go in the other room but she figured some pressure input wouldn't hurt).  She's a funny, sweet, thoughtful little girl :)

Talk talk talk all day long

W was so talkative on Thursday!  Which was perfect timing since he had speech :p  He had lots of fun with Miss H and Iz got to do some puzzles, too :)

We ran a few errands after speech then picked the Busy Little B up from school so he could go to OT.  He had a great session and we are noticing his mental coordination is improving so much in many different areas--this twice a week OT is helping so much!  I'm so glad we switched him over to the rehab center--he liked his OT at the children's hospital but he didn't make even a fraction of this progress in the year he was with her that he's made in a few months at the rehab center.

Miss Iz had therapy right after B's OT and then we were off home for a quick dinner and to pick up the Super Kid so we could head off to swim lessons.  W went to nursery and oh, boy, did he scream at being dropped off.  When we picked him back up, he was happy as a clam :p  He LOVES the ladies at the nursery and loves to play there and loves getting to be around the other little kids but he never ever remembers that love when I drop him off.

The next step on our homeschooling journey

We have been rather isolated the last month or so as we recovered from the dramatic downturn in behavior and emotional/mental control Miss Iz took during the last months at school.  Her removal from that program has seen rapid progress and improvement but we have spent a lot of time at home and at therapy working through some of the anxiety and defiance and opposition that made a reappearance, especially when it was leading to the extreme aggression and flight we saw at school (and spilling over to home).  We haven't been complete hermits--we still went to the grocery store, appointments, etc, but once she started being able to interact with kids in the waiting room without outbursts, we tried kid gym, open swim, all leading up to the big one:  Playgroup!

Yesterday we went to our first one and she loved it!  She was anxious and nervous and she mostly kept to herself.  She did get upset at one point but she did exactly as she was supposed to--she retreated to a place away from other kids to calm down and then she and I talked through what was upsetting and the best ways to respond in the future (practicing what she should do is a big part of her strategy because once it becomes second nature, its easier to put into practice during a high anxiety or high conflict situation).  She did awesome!  She's looking forward to the next outing :)

Today felt absurdly busy :p

We started off our day with some speech therapy for W.  At first, he just wanted to hide but by the end, he was mad we had to stop LOL

We left immediately after speech to drive cross town so W could have his swim lesson!  Miss Iz went into the kids gym and there were a LOT of kids there for her to play with.  One of the workers asked another "why are there so many kids here today!?" and the second worker just looked at her and said "Its January."  Resolution month ;)

When W and I got to swim I discovered we were at the wrong class.  I signed him up for a level one class but he is supposed to be in a level two class (same class, just divided by age) which is on Tuesday.  This is the first time the gym has used an online registration system and our swim instructor says everyone is showing up for the "wrong" classes because there were just too many glitches with the system.  She said we can go to whichever class we want but it actually works out better for us to go on Tuesdays so we don't have to rush after speech.  We did the Thursday class today and will switch to Tuesdays next week.  And this is better for Miss Iz, too, as it looks like one of the local homeschool groups meets on Thursday morning fairly regularly so maybe she can make some buddies to play with.

We did a milk run after swim and then home for lunch and then off again to pick up the Busy Little B.  He had OT after school (and he loves Miss A so going twice a week is fine by him) followed immediately by Miss Iz's appointment with her psychologist Miss J.

By the time we got home again, I was tired :p

We are here and mostly doing fine.  Nothing big or major has happened but things are just a bit overwhelming presently.  Perhaps things will feel better once we settle into the new schedule--aside from starting school again, we've added five new therapy sessions, reorganized the timing on a few more, and the Super Kid is doing cross country.  Busy busy busy.......

Chatty morning

W had speech this morning and boy, was he ever chatty!  Neither of us could understand about 90% of what he was saying but he sure did have a lot to say LOL  They read some books and played with a baby doll and its teddy bear and he kept up a steady stream of chatter interspersed with a few understandable words here and there :)

After lunch we headed out to the Super Kid's open house.  Seventh grade!!  The good news is he has his favorite class on his schedule (social studies), the bad news is he may not get to do cross country because he has speech and OT and therapy two days a week and cross country meets every day :\

We stopped at our favorite thrift store to see what clothes they had and everyone found a few things.  The Super Kid has been working around the  house to earn money to save up for a Nintendo Switch so he's starting to understand that money means working for it so he has become a HUGE fan of thrift stores.  He found some forty dollar jeans for seventy five cents that are in great condition and he keeps telling me "why would I pay for new when I can save so much money!?"

Another busy day

But today it was Izzy's turn to be busy.  We started off with therapy with her psychologist and then headed over to do her sleep deprived EEG.  She never did nap the way they wanted but the EEG tech did get her to lay quietly with her eyes closed so they could get the data they needed.  Unfortunately, her results were abnormal, showing activity in the right temporal lobe.  The neurologist was hoping she would have outgrown it but nope, still there.  We went up on her seizure meds again so hopefully some of those breakthrough seizures and symptoms she has been having will stop.

Why couldn't we have to day off?

You would think after all the sickness and all our cancellations of school and therapies, I'd be rested and all but nope, I just wanted to go back to bed and call it a day--we may have been home, but it was not restful for me :p  But, alas, Miss Iz had a first-thing-in-the-morning appointment with her therapist so off we went as soon as S was on the bus to see Miss J.  Since Iz started her latest anxiety medications, sessions with Miss J are so much more helpful and productive because calming down the anxiety seems to have given Iz the ability to verbalize what is going on in her head so they can actually work on strategies to help her get and stay calm and language to use to get other's to understand how she's feeling.  She even checked herself in--she hasn't spoken to the front desk staff in probably a year but she marched right up, told them her name and who she was there to see, and then marched herself back to the waiting area :)  Now if only we could figure out how to nip the sudden emergence of oppositional defiance in the bud.....

Hey, want another diagnosis?

Yesterday Iz had her results meeting for her neuropsych evaluations and we now officially have the selective mutism diagnosis her last therapist and speech therapist were discussing.  So looks like we are heading back to therapy to help her with the anxiety and the resulting behavior issues.  I was not convinced she was ready to be set free when she was discharged last year so I don't mind going back.  She seems to like the boys' therapist so maybe we'll get lucky and she'll be the one they give Iz's file to :p

Another day at the neuropsych's office

Today it was Iz's turn to do evaluations--the geneticist had attempted to refer her multiple times during the genetic testing process but oddly enough, the NP department at the Children's Hospital never responded.  The private office that did the boys evals (and now therapy) said sometimes the hospital refers younger kids to them so if I wanted, they could do the evals.  So we had our intake a few weeks ago and went in today for the actual eval.

Iz really liked her evaluator :)  She even talked to her!  Answered questions! Played the games!  It was great :p  You never know what you're going to get with Iz and I'm just so glad she wasn't hiding and refusing to talk.  Results meeting in two weeks.

Feeling frustrated.....

For years, my busy little B has had pretty bad meltdowns, to the point where he would need to be physically restrained and his preschool classroom sometimes had to be cleared out until he calmed down.  The severity of these meltdowns and the suddenness of their ending made his pediatrician wonder if he could be having seizure activity like his sister.  She referred us to neurology and we took him to the same neurologist Iz sees.  The neurologist thought seizure activity could possible explain the meltdowns as well (not positive but possible) and B's EEG showed similar abnormal brain activity like Iz's so B started medication.  His dosage has been raised a few times and the frequency of the meltdowns has changed--they are few and far between now.  He's never had one at school this year so the kinder teacher has never seen what he used to be like.  Now, though, he is on the opposite extreme--he will completely shut down, refuse to participate or talk or move.  Honestly, though, the shut down is a million times better than the meltdown--at least with a shut down I don't have to be worried he will hurt himself or others.

The shut downs don't frustrate me.  When they happen at home, we treat them much as we would a mild meltdown--we leave him alone once we've made sure he doesn't seem to be currently having a seizure and he's okay and that gives him time to collect himself and come back to us.  However, his teacher called me and wanted me to punish him at home for having a shut down at school :-|  THAT frustrates me to no end.  She in insistent that this is all control issue and that he will just not work at school and then I'll let him play all evening and she can't have that.  A control struggle with B looks very very different.  He may refuse to do something, he may even refuse to talk to you while he is refusing to comply, but he never stops moving.  He wiggles, he spins, he wriggles around while sitting down, he looks all over the room.  The hyperactivity part of his ADHD does not stop because he is trying to exert control over a situation.  A shut down, though?  He is still.

I tried to talk to her about what his shut downs at home are like, about his OCD tendencies that can kick in and make him lose it over things that normally are just routine, about his anxieties that flare up without warning.  But she just kept insisting its a control thing and I need to punish him.  I talked it over with B's therapist and she is feeling the same frustration I am!  She has seen B's meltdowns and shutdowns as well as him trying to exert control and yeah, a shut down is not a control move.

At the moment, I'm at a loss on how to get through to this teacher.  I need to figure something out :\

B goes to the neurologist

We had our neurology appointment this week--I was very nervous!  But we got excellent news--B's MRI was normal :)  None of the problems Iz has so that is a relief.  Dr. W did raise B's seizure meds a bit more (and told me the next dose up if I'm still seeing seizure activity after two weeks) so hopefully the new dose suppresses the seizures and we don't see any more episodes.  Iz has only had maybe one or two episodes since her meds were raised a few months back so I would love the same results for B.

We also talked about the ADHD and meds.  With S, we didn't even consider meds until we'd tried other avenues but B can get much more severe than S ever did and B's other issues can get triggered by the hyperactivity and impulsivity and in preschool it was not unusual for them to need to clear the room of other students until B got control of himself again.  B has already started weekly therapy and the seizure meds may help with the more severe behavior issues (sometimes seizures can cause them) so we are going to wait until closer to the end of the school year to give us time to find the right seizure med dosage and then talk ADHD meds.  If the weekly therapy and seizure meds bring him down to a more "normal" level, we might be able to postpone the meds but if he is still really struggling, we will go ahead and start.  He's already pretty far behind developmentally/emotionally/socially/educationally so if he's still at an abnormally high level even for a kid with ADHD, meds it will be.  One thing I like about Dr W is that he is just as cautious as our pediatrician when it comes to medication--he wants to make sure that the right med is being given for the right reason.  So if its the seizures causing B's brain to go haywire, he doesn't want to pile on unnecessary ADHD meds when all we really needed was the right seizure med (not that B doesn't have ADHD--I'm pretty sure anyone who spends any amount of time with him can see that he definitely does :p  But if you take away the seizures and the ADHD stands by itself, it may not be bad enough to need meds so young, if that makes sense.)

Hopeful and.......not

I feel both hopeful and discouraged, all at the same time.  I finally got the final report for S back from the neuropsych and while I've been waiting on it and knowing he needs a more formal diagnosis in order to get him the therapies and services he needs, it still makes me sad to get the list.  Especially since the list is much longer than I had anticipated :\  We've had the ADHD and SPD diagnosis and an acknowledgement that he has anxiety--I kind of expected maybe one more diagnosis, formalizing the anxiety or maybe even OCD but man, there are like ten of them.  And a recommendation to re-evaluate after a year of therapy because they could not rule out OCD but couldn't definitively say he has it, either.  *sigh*  Ah, well, forward we go.

What do you say when you see someone?

Lately in therapy Izzy has been working on ordinary things that make her anxious and therefore shut down.  Today, we were talking about what you do when you see someone (say hi!) or are leaving (bye bye!).  Typically when we see someone, she shuts down and looks down at the floor and won't interact with them, even when it is someone she knows well.  So we practiced waving and saying hi or bye.  And then her therapist took her for a walk through the office and they practiced saying hi to people and then bye on the way back to the room :)  When we left to go home, she even spoke to people in the elevator, which is a really big deal for her.  It was a good session!

Would you like to Facetime?

Today was Izzy's therapy day. She has been looking forward to it and talking about it for days--she really does like her therapist.  But, man, the moment we go through the doors to the building, she just shuts down.  She loosened up a little in the waiting room and even talked to me a bit about what she thought we were going to do but as soon as Miss S appeared, she was full-on throwing a fit about NOT GOING IN.  *sigh*  She loves therapy but she gets so anxious :\

We tried something new today and Miss S used Facetime.  Izzy thought this was the funniest and silliest thing ever because we were sitting across the table and using Facetime :p  But she did loosen up and by the third Facetime call, she was actually talking on it, which is kind of big for her.  Now, she typically will talk on the regular phone just fine but once we use Facetime, she takes a while to warm up which I think is probably really hard on her Dad.  He lives in North Dakota for work and without internet where he lives, he has to find time to go to the local coffee shop before they close (middle of nowhere means they close early, often before he's done with work).  It doesn't happen as often as he'd like and when he does call, she takes so long to warm up he doesn't get to talk to her too much :(  And the boys have the attention spans of gnats so when he calls/Facetimes, they blurt out everything in a few seconds and then get distracted and wander off......

Miss S is hoping to get her more comfortable with Facetime so her anxiety won't keep her from talking to her Dad!  She does like talking to him on the phone, though, so at least they have that.  He'd like to see her as they talk, though, and I'm betting she does, too, since she talks up a storm about Facetiming after we hang up.  Poor kid is sometimes crippled by that anxiety :\

Our schedule is getting way too full.....

Its like the floodgates have opened.  I spent so long trying to get referrals, trying to find places that could give us some answers, trying to find out the reasons behind why I had this feeling things were "off".  And since we switched to this new pediatrician, things have slowly trickled in.  We got therapy started for Iz and S for their anxiety, S has been getting special ed services at school to help him with his problem areas, S went to cardiology (where we found out those symptoms chalked up to "FTM worry" all those years ago were actual due to a CHD), we got a referral to genetics for all three kids, a referral to neurology for Iz, we started the evaluation process for B (and kept hitting roadblocks *sigh*).  Seems like a lot, eh?

But now?  All of that stuff up there was over the course of almost a year.  But now we have Iz getting a full genetic workup and the geneticist is referring her to neuropsych to get some evaluations.  We discovered a problem neurologically so she's got that 24 hour EEG coming up plus her MRI found that cyst in her brain so she has a pediatrician appointment soon to follow-up on that and decide whether we are going to test her pituitary function.  Her Early Intervention coordinator and EI playgroup teacher are moving forward with repeating her evaluations to see if she qualifies for special ed services next year to keep her in the program because of her speech/social/anxiety issues.  And she has her ophthalmologist appointment coming up as well.  B had his intake appointment with neuropsych and is scheduled for a full evaluation.  S is scheduled for an intake appointment with the same neuropsych.  I finally found a dentist willing to see all three kids (as soon as they hear heart kid, ADHD/SPD, and autism-like behaviors, the dentist offices are "full" or "not equipped") so those appointments are coming up, too.  Plus all of our normal appointments :p  The next month is busy busy busy busy busy :p

Iz was not sure what to make of both her therapists being present at speech therapy :p  She kept taking turns glaring at one then the other and growling at them.  Then she'd get distracted by toys and would talk a bit, remember that there was an extra person in the room, stop to glare and growl, and then get distracted by playing again.  heh. 

When our session was over, I had to leave immediately because I have to go pick S up from school and we cut it pretty close!  But her therapists were going to talk over what they observed and start brainstorming some things we can do to help Iz through her anxiety so hopefully Monday (speech) and Tuesday (therapy) will bring a good game plan.  :)

Oh, wait.  We can't make therapy on Tuesday--Izzy's sedated MRI is Tuesday afternoon and there just isn't time for me to go back for the boys and then back up to the hospital to make therapy (the hospital is about an  hour away).  Well, we should still get some information from the speech therapist on Monday/Thursday and then will see her regular therapist next week :)

She speaks!!

When we went to playgroup on Wednesday, I thought it was going to be a rough day because the first thing Iz did when we arrived was to hide behind me.  And then she laid on the floor and covered her eyes (in her mind, no one can see her if she covers her eyes).  She did eventually start to play a little but if anyone spoke to her, she would cover her eyes. 

She moved over to the play kitchen (one of her favorites) and started to play with me and she didn't leave when other kids came over!  She interacted with them a little bit but mostly played by herself but not leaving when they came over is pretty big for her :p 

The EI teacher in charge of her playgroup is concerned by her lack of social skills and the big regression we've seen as far as speech and anxiety and is recommending Iz get another full evaluation for services to see if she qualifies to move into the next program to get extra support to help her reach her social/emotional developmental milestones.  She's not sure its severe enough to get her into B's program, which is a special education preschool program, but she may qualify to move into their "regular" early childhood education program with extra support.  We talked a bit about Iz's unknown neurological issues and the teacher is thinking we should do the evaluations towards the end of the year to give neurology time to do their tests and try to figure out what's going on so we know if the neuro issues could be causing the social/emotional issues (Iz has also started having outbursts than can rival B.  This is around the age it started with B so there is some concern that she could have whatever B has--he's got an appointment with a neuropsych coming up so we can try to figure it out!  Iz could just me mimicking his behavior but who knows :\).  So we'll see what happens.

At one point, all of the students and parents were on one side of the room and Iz led me over to the other side to play with her and she started talking to me--last week, not one word out of her the entire time (hour and a half) so her talking to me while we were in the room was great :)  Her favorite little girl came over and Iz talked a little to her as well.  She talked a little on and off the rest of the session so that was nice!  And she sort of participated in some of the songs/games during circle time :p

Yesterday was speech therapy and she opened up there and spoke to Miss Emily, too!  We are apparently on a roll this week :D   The first word she said to Emily was an accident, I think.  Up to that point, she'd been pointing or grunting or mouthing words with no sound.  But a word popped out and it seemed to open the floodgates because a few minutes later, after trying out single words here and there, she was talking up a storm.  Emily is impressed with her grammar LOL  She may not be able to say the words clearly but she knows how to put them together ;)

Her therapist (who we saw Tuesday) is going to try to come to a speech session so she and Emily (and I) can coordinate to try and get Iz over this anxiety that is keeping her from speaking.  She couldn't make it yesterday because she couldn't rearrange her schedule but she's trying to shuffle some things around to make it next week.  If she can't, we'll try to move one speech session to a time all of us can do and then go back to our normal time.

We've got several things coming up!  In a little less than two weeks we have Iz's MRI, B's neuropsych appointment, Mr. Piper is coming for a week, we have another genetics appointment, and then in a little over a month we have a 24-hour EEG.  I was told the EEG was an overnight but when they called to schedule they said nope, full 24-hours.  Yikes.  Luckily, we were able to schedule it during a time Mr. Piper will be home (not til May, though) because I have to have a second adult there.  I wish I had thought to ask some more questions :p  Will she be tethered to a machine in her room?  Because keeping a toddler in a hospital room is not fun.  Or is there some sort of portable machine so she can walk around the hospital and go to the playroom?  Guess we'll find out when we get there in May!

Special Time

We are finally moving out of the observation/gathering information stage of therapy for Iz and getting into some of the hands-on behavioral therapy.  Right now we are in the relationship-building stage where we work on shifting our behaviors to change her behaviors.  Our "homework" this week and last is to spend "special time" with her--at least five minutes a day where we focus on her and let her lead what we do.  During those five minutes, we are supposed to focus on NOT doing three things--giving commands, asking questions, and criticism.  There are five things we are to focus on doing--PRIDE.  P is for praise--not your generic "great job" but labeled praise to emphasis the good things she is doing (you played with that toy so gently, I love how you hugged your brother so nicely, great job putting those blocks together, etc).  R is for reflection--repeated words/phrases back to her as a statement (she says "help?" and you say "you need help", etc).  I is for imitate--we imitate the actions we want her to be doing.  So if she drives the car on the floor where it belongs, we get a car and drive it, too.  If she stacks a block, we stack a block. etc.).  D is for describe--using words to describe her actions (you are closing the door, you are stacking the blocks, etc).  And E is for enthusiasm--being genuine in your excitement over what she is doing.

I am so used to asking her questions when we do things that not asking them for those five minutes is hard for me LOL