Stop it Spring!

A couple days after the Spring Blizzard, we got six inches of heavy wet snow.  Under that heavy wet snow is a layer of gooey mud from the melted blizzard snow so my main vehicle is now stuck in the mud :|  Fun times during Mud Season!

Miss Iz has been working on some new sensory strategies with her OT and has been doing a great job.  She keeps Miss J on her toes as things will work great for a while and then Iz gets desensitized to them and they have to start over to find something else.  But she is enjoying the new activities, especially the kids yoga, and shows off the new things she is learning at home :)

The Busy Little B is making tons of progress with his OT but we expect to see some regression soon because Miss A is leaving :(  She is wonderful and he has made so much progress with her but she was only part time and she found a full time position.  As much as I want to keep her, she can't pass up full time :p  I wish the rehab center had a full time spot for her so she could stay :(  B doesn't always do well with change so it might be a hard transition for him.  We had to switch speech therapists recently and he won't say a word to the new therapist.  He will nod or shake his head and smile at her but that's it.  Hopefully he adjusts soon and starts talking to her :p  So it will not surprise anyone if he does the bare minimum at OT with a new therapist until he adjusts.

The Super Kid is also making good progress on his goals in OT but he's been recertified for another session because he's not met the goals and they adjusted a few.  One of the main things we started for was handwriting and it has improved so much!  He's a leftie with hand strength issues plus learning disabilities that effect handwriting so the fact that his print is so clear now is fantastic.  He's still struggling with some reversals and spacing issues and the quality of his writing is still going downhill after some time writing but its progress!  He's quite proud of how nice he can make it look when he first starts writing :)  Those hand strengthening exercises will help with how long he can write, too.

Little W will be doing some testing soon as he ages out of the Birth to Three program to see if the school system will pick up his services.  OT is so hard to get through the school i doubt they will continue that but maybe speech.  He's improved so much but he's still hard to understand--his articulation isn't the best :p  I may need to get him evaluated at the rehab center to continue his services privately if he doesn't qualify to transition to the school system's services.

The last crazy Tuesday

I am so glad the Tuesday schedule is going to be easing up a little.  I had come to dread Tuesdays and how packed and stressful they are with the constant moving from one appointment to another.

This week is the last week of swim lessons and the next session will be after school is out (they have one more lesson on Thursday) so now we can go home after social skills group for the Busy Little B instead of rushing off to the pool.  And near the end of April the social skills group will be over as well so we'll have our evenings back for the rest of the school year :)  Not having to eat dinner late and going to bed on time will be greatly appreciated :p

OT went well for both the Busy B and Miss Iz.  B's therapist is really pleased with his progress and it is showing in school and at swim as well!  He has trouble processing multiple things at once so coordination and multi-tasking really suffer but since starting his twice a week OT he's shown so much improvement!  He still struggles a lot more than your "average" kid his age but compared to his abilities at the beginning of the year, he's come a long way!  Miss A is really really good for him :D  Iz's therapist, Miss J, has been really pushing Iz's boundaries so they can work on her strategies for dealing with frustration and sensory overload.  Miss J had to really back off on that type of thing earlier this year because Iz was spiraling out of control due to everything happening with school.  She regressed so far over the fall and early winter :(  But she has really bounced back!  I'd say we aren't quite back to where we were at the end of summer just yet but we are getting there.  Just last night she was in sensory overload at the pool and she shouted at everyone that they needed to JUST BE QUIET.  While this wasn't an appropriate response because you can't just scream at everyone, it was a better response than a few weeks ago when she had to be physically removed from the pool while she lashed out at everyone in reach :\  Baby steps?  (and while none of the adults stopped being loud and the music was still blaring and it was still very very loud in the pool, the kids stopped shouting and calling her name and trying to talk to her and she was able to focus and do her task).

OT day again!

We had a busy day yesterday.

After the boys were off to school and breakfast was eaten, off we went to the gym.  Iz went to kid gym and W went to his parent-child swim lesson.  Only one other parent-child set showed up and they left early so W got lots of extra attention from the instructor.  We stayed an extra fifteen minutes because the kids for the next class were late.  Once they showed up, though, W and I headed out--even though it was an open swim time in the pool and we could have stayed, if his instructor is teaching a class, he thinks he should be right there, too :p

Iz had fun in the kid gym and when we picked her up she was sitting with another little girl looking at books together :)

Home for lunch then off to collect the Busy Little B from school so he could go to OT.  B got extra prizes in OT because he spotted a pair of nail clippers and voluntarily clipped one of his nails!  This may seem like no big deal but B is extremely tactile defensive in many areas and one of the worst is his nails.  Kid's brain processes the sensations of clipping as extreme pain and one of the things he has been working on in OT (unsuccessfully up until this point, I might add) is desensitizing his fingertips so nail grooming can happen.  It was a HUGE moment for him :)

After that we headed home to wait for the Super Kid and then took him straight back to the rehab center we had just left so he could have OT :p  He has always had really low strength in his hands and this has made things like tying shoes and writing rather painful as his hands tire quickly.  His handwriting has improved to the point where its actually quite nice when he starts out but as his hands begin to hurt, his writing is barely legible.  He's done OT in the past to help improve hand strength but they are working on it again.

Miss Iz and W were sure excited about school this morning!  We didn't even make it through breakfast before Iz was doing math worksheets and then they finished eating while watching a Magic Schoolbus episode about air pressure :p

This afternoon was OT.  One of Iz's goals is to be able to tolerate trying foods, particularly vegetables.  She used to eat just about everything but over the last year, the list has dwindled dramatically and she was complaining about the feel of food.  This past week she has skipped many a meal because it didn't look like it would "feel right" and she refused to eat.  So OT includes a bit of feeding therapy as well to overcome the sensory aversion.  She tried all kinds of stuff at OT today :p  Now if we could just get her to eat at home!  She helped me cook dinner (chili) and she actually ate an entire serving so progress, eh?

Later in the afternoon we had to take the Busy Little B back again to do an intake appointment/evaluation with one of the psychologists.  He's going to do a ten week social skills group with other kids his age starting next month.  B is friendly but his friendships are very surface level and he doesn't actually interact with kids very much.  Hopefully this will help!

Last OT of March!

Apparently this is W's week to shine in therapy because he has been so focused and has participated beautifully with all of his therapists this week :)

He and Miss M worked on some fine motor skills first--last week she introduced the motions for twisting a cap off and on and off all week I have been practicing it with him and he just would not do it on his own.  Miss M arrives and he was showing off his ability to twist the cap and make the toy pop out :p  Little stinker.

They did some strength exercises where they affixed little suction cup toys to my freezer and then pulled them off--the harder you push on them, the harder they are to pull back off.  At first, he pushed them on and they barely took any strength to pull back off but by the end, he could push them on hard enough they made popping noises when you pulled them back off.  He thought that was hilarious.

They did some puzzles, too, and he is getting much better at rotating the pieces to go in plus he did a lot of crossing the midline (the reason they were doing puzzles).  At the very end he swung in the blanket--he kept his head out and apparently that was today's key for an enjoyable swing instead of him crying and trying to get out.

Miss M is going to come up with some activities to help with the resurgence of sensory avoidance that has him stripping every chance he gets again :p

This boy can create his own OT class anytime, anyplace

Baby W has been in OT for sensory issues for a while (also for core strength, his hip flexors, and fine motor skills but his original referral was for sensory processing disorder) and one of the big activities for many sensory kids is heavy work.  All of my kids have varying degrees of sensory processing disorder so it really should not have been a surprise that Baby W also had it :p

Heavy work provides really good deep sensory input and can really help calm a kid down.  At OT, they use things like weighted balls or toy shopping carts filled with weights or some of the equipment.  At home, we have them push around laundry baskets or a bin with another kid inside :p  Back in November we took a weekend trip and after being in the car a good chunk of the day, Baby W was really seriously craving sensory input and it was making him a little stir crazy.  He has gotten so used to being directed to do heavy work when he's antsy that he simply took it upon himself to create his own.  I so wish I'd gotten pictures of him but to be honest, I was too busy laughing at what he chose to do that it never occurred to me to whip out a camera.

Mr. Piper used one of those luggage carts (looks just like this one: hotel luggage cart) to bring in our things and after it was all unloaded, he wheeled it out into the hall and stepped back in the doorway to let me know he was going to return it.  Baby W darted past him, grabbed the back of the cart and started pushing.  He is one strong little guy and even though it was a heavy cart, it started moving.  Mr. Piper guided it, did not help push it at all, just made sure it went in the right direction, and Baby W pushed that thing all across the hotel back to the reception area.  The receptionist was astonished that our barely walking one year old was pushing it alone and she decided he needed a reward.  She raided the breakfast stash and got him a tiny box of cereal and he was beyond excited to have his own little box to carry around.  He could not wait to show it to me and he carried it around the hotel room making everyone look at it. 

Feeding therapy is going well.  He is showing signs that his body is working to keep his airways clear so there's hope that when we repeat the swallow study over the summer, he may be able to ditch the bottles and go back to "normal".  He hates them oh so much :p  He's been gaining weight as well and I finally finally finally can stop buying size two diapers!  Next pack I buy will be threes :p  I know it may be a strange thing to celebrate but I'm betting parents who had a slow grower "get" it :p

Iz is doing well with her occupational therapy and is (mostly) invested in doing a good job.  We've started Stick Kids at home and she's excited about learning the new activities.

My Busy Little B is struggling with sensory stuff so bad right now.  Last week it caused a complete shutdown at school--they called me when he stayed in the same position for over half an hour.  When I got there, he was sitting up but curled over and obsessively digging at his toe with his fingernail--I'm surprised he didn't draw blood :\  I called up the pediatrician and got an OT referral--he goes in tomorrow for an evaluation and hopefully will qualify for some therapy to help him deal with the sensory overload.

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.

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

Wreck-It Ralph *spoilers ahead!*

A few years ago, we started S in the local public school for Kindergarten.  He was so very excited!  He couldn't wait to go to school and ride the bus and learn all sorts of things :)  We did the orientation and the bus tour and met his teacher and got a tour of the school and all those new-to-school things one does and his excitement just grew and grew and grew.  It was adorable!

That excitement was short lived.  To this day, I still do not know exactly what happened at that school--they circled the wagons and just would not talk to me.  I would get calls about behavior that was completely out of character for S and when I tried to find out what had happened, the principal would say they had nothing to do with it, S just acted that way.  According to him, there was never any provocation, no one was ever involved, it just happened.  I never tried to deny he had done something, even when it seemed highly unlikely (such as the time the principal said he beat up a group of third graders), I just wanted to understand the circumstances leading up to whatever they said he did. I couldn't work with him on proper behavior and responses if I didn't know what happened, you know?

On the day we pulled S out of that school, he came home in tears.  He had a "talk" with an adult at the school and she told him that his brain was bad and so he was bad and since it was his brain that was bad, there was nothing he could do about it and he would always be bad.  When I called the principal, I told him that I was giving his staff the benefit of the doubt because surely no adult would say such things to a child.  However, it is important that you verify the kid understands what you are trying to say because what a child hears is often NOT what you are trying to say.  S was so upset over this and all I wanted was for him to have another "talk" with whoever it was so she could clarify what she meant and help him.  No matter how many times I tried to tell him he was not bad and not doomed to be bad forever, it still came down to the fact that someone in authority, that he trusted, that was at his school where he knows he goes to learn, made him feel worthless and he needed to hear from her that he was not.  The principal's immediate response?  No one ever talked to him.  No investigating, no conferring with the teacher and aides, nothing.  Just an immediate, no one talked to him.  How the heck would he know that?  How can he with confidence say no one spoke to my son at all the entire day?

It was the last straw.  We pulled him and within a few days he was enrolled at a charter school in the small city about ten miles or so away.  There is no bus service so I drive him there and pick him up--it is a bit of a strain budgetwise because of the gas but it is such a better place for him.  If there is a problem, or even a potential problem, they talk to us.  We work together to come up with solutions.  They even helped him mostly get over the "talk" he had at his former school.  He still occasionally brings it up but he recognizes that while sometimes his behavior is bad, he himself is not--he is learning and trying and working at it.  But the fact that he still brings it up is heartbreaking :(  He still has that fear that maybe it is true and he is bad.

Last month during one of our family movie nights, the kids wanted to see Wreck-It Ralph.  I did not realize when we got it from redbox that it would become so important to S and would provide such an awesome platform to help him continue to work through the lingering issues he has from his first Kindergarten experience as well as issues with his ADHD & SPD.  S knows he is different from the other kids.  He has trouble sitting still, things are harder for him to learn, he has impulses other kids do not.  We talk about what ADHD and SPD are, try to show him he is not alone and many other people have it, too.  Try to show him that everyone has strengths and weaknesses and that even though he may be teased for being "different", he is still awesome.  Sometimes, though, it is rough because he is at the age where he just wants to fit in and doesn't realize that everyone has something different about them, everyone has struggles, everyone has things they need to work through.

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 Enter Wreck-It Ralph :)  S really identified with Ralph.  Ralph was a bad guy.  He did bad guy things.  The other characters of the game treated him differently.  The Bad Guy support group reinforced the idea that a bad guy is a bad guy and there isn't much you can do about it.  And yet Ralph is not a bad guy.  He doesn't want to be a bad guy.  He wants more.  And then there's Vanellope--she, too, is different and gets teased and picked on because of it.  S thought her "glitches" were kinda like him--she had some control over it but not enough to make it stop, it sometimes interfered with what she wanted/needed to do, and the other kids were mean to her about it.

And yet, those things did not define them.  Ralph's job may have been a bad guy, but he himself was more.  He was kind and smart and brave.  Vanellope wasn't just a glitch--she had dreams and talent and determination.  The characters get a happy ending and I think S really needed to see that.  It helped him articulate some of his fears about being different but also gave him hope. Other people saw Ralph as bad but in the end, he showed them he wasn't.  Like S, Ralph believed them for a long time but when he decided he was more than a bad guy, he worked hard until he was at a place he was happy with.  People saw Vanellope as just a glitch but she showed them she was so much more.  Vanellope always had confidence in herself--she always knew that she was special and could do much more than people thought.  I have been working with S since the day he had that "talk" at school on having more confidence in himself and seeing all the things that are special about him.  While we have made tons of progress, seeing Ralph and Vanellope really hit home with him.  I wonder if there will come a time years down the road where this movie will be in his "defining moments" category?  It may fade away in memory for him but I think it will always have a special little spot in my heart for the many many teachable moments and conversations it gave us. 

IEP, round two

A few days after B's IEP meeting, it was time for S's meeting.  Unfortunately, there were no toys for Iz there but she soon discovered the white board and markers LOL  The OT also had some cards she uses with the kids and let Iz look through those, too, so Iz was reasonably entertained so we could talk.

This year has been up and down.  Sometimes things would go well and sometimes they just weren't :\  Part of it was they had some staff turnover that affected S and things were lost in the transition.  It was frustrating that we had a plan in place to help him but lack of communication between old, new, and transitional staff meant it wasn't always working.  I dunno, perhaps starting off the meeting by stating how frustrated I was may not have been the best but on the plus side, I have seen an effort on several of the staff's part to communicate better and more clearly.

Over the last several months, we have gotten several "hints" that we need to be thinking about medications for S for his ADHD.  No one has come straight out and said it but reading between the lines, the implication is strong.  At this point, I'd rather see them fully carry out his IEP and see if we can get back the results we had at the end of last year!  And after the IEP meeting, I am not at all convinced we are at the point of medications since we didn't even talk about his ADHD affecting his learning and performance in school.  Everything was centered around his sensory processing disorder and his ability to learn.  I would really like to say learning disability but nothing is diagnosed and their evaluation says he does not have one.  However, the OT is at a loss because he should have outgrown seeing/writing letters and numbers backwards but he has not.  And she is in agreement that he doesn't seem to see a difference between a correct letter and a backwards one--put them next to each other and they look the same.  And letters that are similar, such as b and d or p and q all look the same to him so he has a fifty fifty shot of picking the correct one :\ She is working with him on writing them correctly but unless we can find a way to teach him to distinguish between backwards and forwards, he will still struggle to read because sounding out the wrong letter means he doesn't get the words :\  I see many of the same letters/numbers backwards as well but the similar ones look different to me so I can distinguish between them.  I'm not sure how to help him with this and frankly, the staff is at a loss as well.  The head of his IEP team is researching and hoping he can find someone out there who wrote about it and has some tips.  I am hopeful the new pediatrician (if we ever score a new patient appointment--how many hoops does one have to jump through?  And why can't the people who schedule appointments tell me everything I need to do the first time I call instead of giving me one more thing every single time I call :\  I know the office is busy and it is supposed to be one of the best in the area but can't you make your own appointments instead of outsourcing the hospital customer service staff who can't seem to make this easy?  :p) will have some insights and suggestions and give us a referral for services since reading difficulties are one of their "things".  Fingers crossed that when I call again today, all my Ts are crossed and my Is dotted and they give me an appointment LOL

Overall, though, I am pleased with how the meeting went.  We had a nice discussion of things that work with him and I brought up some things we do at home that are successful--those are now part of his IEP and with the improved communication I am seeing, I can see them implementing and having success with it :) 

They outnumber me but I survived......

Recently, S's school had a carnival on a Friday evening and S desperately wanted to go.  His Dad works nights so wouldn't be able to go so I thought maybe I could get Aunt H to come with or maybe one or both Littles could stay with Grandma and Grandpa so I could take him.  Taking all three kids someplace alone can be.....overwhelming.  Especially if it is something big and exciting--they get hyper, they want to run around and see everything, they leave their listening ears at home, they are exhausting.  It is one of the constant sources of my mommy guilt, the fact that we sometimes skip doing things because they outnumber me and it can be difficult to make it through a trip with all three alone.  Sure, I do it.  Trips to the grocery store, going to the park, doctor's appointments, etc.  But it is not my first choice and I usually try to have one or two with me instead of all three.  Is it bad to admit that?

S modeling one of his prizes from the Carnival.

  

But, alas, nothing was working out and I would either have to brave the concert alone or disappoint a little boy who talked of this carnival for weeks.  I packed them up and headed out.  It was crowded and noisy and crazy and kids were running all over and fighting and pushing and cutting lines and downing large quantities of brightly colored sugar.  And I was amazed to see mine calmly waiting in line, being patient, waiting their turn in long lines for games and bounce houses without complaint.  Who were these little angels and where were my children?

They had tons of fun and when we got home, I had no complaints about going to bed.  The next morning, they were up right away and got ready to go and did awesome in swim lessons.  They both listened, and participated eagerly, and when other kids were goofing around and ignoring the teacher, they were calmly in their spots, waiting for instructions.  Again, who were these little angels and where were my children?

They are both pretty hyper and there are days when I wonder how they can possibly stay awake after moving so much.  Part of it for S is the ADHD and SPD but he has been working hard both at home and school to learn how to calm himself and save the jumping and spinning and twirling for more appropriate times.  I guess the carnival and swim lessons were one of the times when he was practicing extra hard!  Of course, soon afterward we went to the grocery store and things were back to normal with the million and one questions about everything and anything and the spinning in circles whenever I stopped the cart to pick something up and the constant touching of everything ;-)

So much to be proud of.....

The past couple of days, my little kidlets have given me so much to be proud of :)

I think Iz's accomplishments go without saying ;) Catching up physically, always trying new things, being so excited to learn new skills, learning how to wave and say "bye-bye", having opinions about things, growing and growing and growing :)

B had an awesome day on Wednesday--I mentioned last post that we toured his preschool for next fall :) We got to meet his teacher and spend some time in the classroom and meet some of the students who will return next fall (and some who are graduating and moving on to kinder). He was very very shy at first but he wanted to participate so bad :) Since PT was evaluating Iz, I was free to hold his hand and walk with him as he tried out the obstacle course in the gym with the other students. He had fun and soon forgot that he needed me and did it all on his own ;) One thing he has struggled with during playgroup is circle time--he doesn't want to sit, doesn't want to participate, he just wants to do his own thing. He did awesome at preschool! He insisted on sitting next to me but he did sit and he sort of participated when he thought no one was looking ;) He tried to get up once or twice when other students did but for the most part he did great. I can't wait to see how he responds to speech therapy next year while he is at preschool :)

S has been having a great few months--ever since his IEP was put in place, he has been on green every day, he is getting assignments and homework done, he reads so much better, and his academic progress is better and better. He had a field trip to the zoo yesterday and my cousin took him--the last time she took him to the zoo, they had to leave early because he was throwing tantrums and not listening. Yesterday, they had a great day--he listened, he obeyed, he had fun :) The "sensory diet" the occupational therapist recommended really makes a big difference in his ability to calm himself.

We have our rough patches but overall, life is grand :)

:(

I am behind a few posts on what has been going on (no time) but quickie update:

**B hates speech therapy playgroup for 75% of the time we are there. The other 25% he thinks is awesome. I am hoping those ratios get better....
**I am sick. Again. I need to not be sick because if I am sick when Baby I has her surgery, I can't be with her :(
**This may be a moot point, however, since Baby I now has her very first fever. If she isn't well on Monday, we have to call and reschedule her surgery.
**S has been having evaluations at school for his ADHD to get an IEP. Our meeting is tomorrow but the occupational therapist emailed me the report just now--she believes he also has a Sensory Processing Disorder and wants him to have occupational therapy at school and at home.