Parent/Teacher conferences

We had our parent/teacher conferences last week.  It’s always a funny thing being on the parent side.  I have been on the teacher side MANY times.  I’ve brought great news and difficult news to parents.  I’ve made recommendations that were difficult to swallow.  I’ve had parents hate me for the year because they thought my expectations of the child were too high, or they disagreed with my observations.  I tried my best to be tactful but honest with parents about my students in school.  I wanted to look out for their emotional well-being as well as their academic progress.

As the parent, you are just sitting there, on your seat, helpless, waiting for the news of your child.  I’ve been through this a few times,  but it doesn’t get easier.  I am not a parent that thinks my kids are perfect and amazing.  Especially S, since we’ve been through many things with her in her short life, I see her clearly.  Her strengths and weaknesses.  I think I see her just honestly.  I’m not easily surprised of news of her.  Still, when I hear about S’s difficulties, I’m still very sensitive towards her.  I think I would be of M, too.  But she is young.  She doesn’t have conferences at her young age.  She presents different challenges in school for us.  Her problems, while intense and disturbing in their own right, are very different from those that we face with S.  It’s not easier for her or worse, it’s just very different.  Since M is still so young, we will have to see how things keep unfolding.  S is still young, but as an elementary student, all these academics and expectations, while easy going, are growing and intensifying.  I am scared what will be coming at us each year.

We couldn’t have asked for a better conference from S’s teacher.  She was inviting and sweet.  She was upbeat about S’s strengths and held a positive tone with where she still needs work.  The resource room teacher was also there.  Together, they put S in the same light that we see her in.  I found that encouraging.  They know my daughter.  The things that are hard for S this year will probably be hard for her for years to come.  She has impulse control issues, especially when it comes to speaking.  She just blurts things out when she does.  During a story, a conversation, or a quiet work time, she just starts jammering away.  Those are things that we work on, too.  But that’s going to take awhile for her to control.  Raising her hand and waiting to be called on, definitely difficult.

Her teacher showed us some evidence of S’s work from writer’s workshop.  I was impressed.  I knew S can write, but she really did well with her writer’s workshop.  A sentence or 2.  Words spelled correctly.  punctuation even!  It was endearing to see the picture of her and her dad and sister out on the canoes when I was away one weekend.  Or a picture of the 3 of them at the Toy Story 3D movie when I was away another weekend.  There is a lot going on up in her head, and not as many ways for it to all come out.  We had no idea she even felt anything about the movie.  She had been so nonchalant.  Overall, it seems that S is thriving, and comfortable and doing well.

We got to meet her speech teacher at school, too.  Another lovely woman.  Again, in these few months, she has nailed down S’s speech issues.  In the category of speech, there are a myriad of issues.  Her fluency of speech, her pragmatic language, her difficulty with the give and take of a conversation, grammar, answering WH questions (who, what, why, where, when…why and when are really hard for her).  These are just the immediate ones.  Laid out, it made me so glad to have kept on the private outside speech with Step.  So many areas to conquer, so little time.

Anyway, all in all, my husband and I are happy about the way the conferences went.  We know the challenges that lie ahead this year and beyond.  We also know that S is happy and trying.  She has teachers around her that get her, understand her and how she learns.  We have outside therapists working with the teachers and school therapists for deeper insight and to be able to do things in her private sessions 1-1 that can’t be done in school.  We have a system of people all working with S, people that genuinely like and enjoy her and want to see her doing well.  That has to be enough, for now.

Thanksgiving thankful

Before the weekend is fully out, I just wanted to put out there what I’m thankful for.

First off, I’m thankful that myself and my family are all healthy.  Colds may come and go, but something long, drawn out, and leading to possible death has not hit upon us.  (knock on wood).  We are together, and striving.

My family has given me a lot of perspective on the holidays.  As bills loom over us, as difficult distractions come our way, for the most part, the kids are just excited for the simple things.  The inflated turkey in our neighbor’s lawn brings a smile to their face.  When they wake up, they check to see if the sun is shining.  And when it’s gray and raining, they are still excited because it usually means by dinner time, we are all in our pajamas lounging.  A strawberry milk in substitution from white milk causes as many yah-hoos as a roller coaster ride…almost. The random “I love you Mommy” when I walk by melts my heart and keeps me as warm as my dream of the stainless electrolux in my kitchen.  Maybe that’s a bad comparison.  The sweet smile I get when they turn their head ever so slightly when one of them is sitting in my lap and we read a story.  It’s their way of saying, go ahead and kiss my cheek.  They just need those little things.  When I get all worked up about an issue, my husband, true to his nature, is a cool cucumber.  He brings it around for me so I see it more clearly, my feelings are validated, yet he calms me down.   He absolutely knows how to push my buttons, but he also knows just what to do to calm them down (especially when he is not the culprit at that moment!).  There is chaos all the time in this household.  Yet I’ve found that the 4 of us…we just make sense together.

Where would I be without my friends?  In a dark hole!!!  My friends have been my lifeline this year.  Every year.  But especially this year.  They listen without judgement.  We don’t get all caught up in petty bullshit.  It’s low maintenance all the way around.  And we care so much about each other and their families.  Their words of wisdom are just as valuable as when I just need a sounding board.  They’ve given me good cause to laugh and just alleviate the stress from the daily grind.  College was the first time I really saw the importance of female friends.  Post college was the first time I was able to really develop real friendships in the working/real world where we weren’t around each other all the time.  Becoming a mom made me see the necessity in good mommy friends.  And now, all those relationships are working together.

I can’t complain.  Great family and friends.  Great family living away from here, whom we miss dearly.  Great friends that we don’t talk to enough nor see enough.  Yet everyone of them we think of so fondly, and hopefully them to us, too!

With all the daily crap that we all deal with, let’s just take a pause for the goodness in our lives.  And pray that we continue that ride together.

a doozy

This past Friday was a crazy day.  There are a bunch of different things that happened that I plan to blog about this week.  Oh, so many things happened.  Too much for 1 blog.  Too many thoughts would explode this one post.

Anyway, so it wasn’t our first trip to the ER/urgicare, but it was the first time there was no indecision about going.  It had been a long day.  We had been out all afternoon.  We stayed out for dinner and came home about 8:15pm.  I told the girls to go right upstairs and get into their pajamas.  S went up first.  I went up about a minute later.  M was looking for her blankie in the family room, and my husband was just emptying his pockets.  I was gathering their pajamas when I heard a boom, followed by a quiet pause.  Then we heard screaming.  You know that screaming that just shouts pain?  It brought both my husband and I out running.  I looked down the stairs to see my husband cradling M, trying to calm her down.  She was bawling.  S ran to the top of the stairs, looking extremely curious and worried.

My husband, while cradling her, asked M what happened.  She yelled that she fell down.  He asked if she bumped anything.  She yelled the wall.  When asked what, she said my mouth.  He brought her upstairs, where she continued to cry.  M had been burying her head in her blankie.  When she pulled it away so we could wipe her tears and nose, the blankie came out red.  When I looked into M’s mouth, there was blood all over her bottom teeth and building in the pool inside her lower lip.  There was no way to tell where it was coming from.  We took her into the bathroom where she was able to rinse her mouth with a cup.  I pulled her lip down, thinking maybe she lost a tooth or bit her lip.  What I saw was gruesome.

There was a wide, very deep, jagged cut along the inside of the gums.  One part looked so deep.  I put a wet washcloth to her mouth, and told M to hold it there.  She was almost fearful of how bad it was. She asked me if it looked bad.  I said very calmly, smiling, “No, you have a booboo.  It’s not bad.”  I must have sounded like I was on drugs.  I was trying to stay non-chalant.  Inside, my stomach was churning.  I was truly grossed out.  I called my husband, and showed him.  First words out of his mouth, “Wow.  That looks pretty terrible.”  Fresh tears exploded from our 3 year old patient.  After throwing him a look, and he returned an apologetic one, he said, “We should take her to the ER.”  I agreed.

On his way down the stairs to grab his keys, my husband called out to me, asking about the urgicare.  During the off hours, our pediatrician’s office has a pediatric urgicare.  But they don’t do stitches.  There are a couple of private uricares, many of them walk-ins near us.  They don’t take a lot of insurances, but you have no wait, you see a PA (Physician’s asst) and/or doctor.  They see children, and do stitches.  Our friends had just been telling us about it last weekend.  He called to see if they were open.

I got M dressed, and sent her off with her daddy.  I stayed behind with S.  She was so tired, and asking so many questions.  She kept asking me if M was okay.  She wanted to know if Daddy was coming back or if he was going to stay at the hospital with M.  Poor thing was so worried.  When we realized that M was bleeding, S had run over with a bottle of water, telling M to drink it.  It would wash it all up.  S is not a maternal figure by any means.  She can be empathetic to others, but not so much to M.  When M is crying and having a tantrum, S gets so upset.  She stomps her feet near her, and sometimes kicks her in the legs.  I think she is hoping it will shock her into silence. We are working on that one BIG time.  Anyway, she was definitely concerned about her sister, and not just because her daddy wasn’t home, either.

I put S to bed, and just waited.

An hour after leaving, I heard the garage door open.  My husband came in with M in his arms.  She was subdued, but awake.  She got 3 stitches.  My husband became a believer in urigare that night.  He said he walked in, and they showed him to a room.  They gave him the paperwork to fill out while a PA started to examine M.  They checked her for head trauma and asked a lot of questions.  The doctor examined her, too.  My husband said that M was so good.  She nodded her head when they were talking to her.  They told her they were going to put a sheet around her arms because they didn’t want her arms to get in the way.  She nodded okay.

It was 50/50 if she needed stitches.  I still shake my head at that.  It would take 7-10 days to heal without, 4-5 days if she got them.  My husband said to do it.  M got a shot of novocaine.  Finally, the crying began.  They were dissolvable stitches.  They warned that she would probably play a lot with them with her tongue and try to chew it.

If that had been S, there is NO WAY, abosolutely NO WAY, that she would have been calm for any of that exam.  And the shot and stitches, forget it.  It would have been easier to knock her out for it!

Anyway, M is still adjusting.  She’s doing well.  Eating hurts her, depending on what it is.  She is trying to drink.  A lot of times, the liquid pools in her bottom lip and dribbles out.  She hates getting wet from that.  She doesn’t close her mouth all the way.  She’s congested from a cold she is starting to get, so her lips dry out and crack from breathing through her mouth.  Poor thing.

M needs a lot of TLC.  And let’s us know, too.

And today, she finally let us know that she was walking up the stairs with her blankie over her head.  Because she wanted to, she says.  Lesson learned.  Don’t walk around the steps with a blanket over your head.

looking back at videos

We spent about 20 min looking at old photos on the computer and some videos.  Most of them we looked at were either right before M was born or right after.  I’m seeing S through a different pair of eyes.  My goodness, she was round!  It’s funny looking back, especially the video, because you forget sometimes the essence of them back then.  Pictures just capture that moment.  But the video…oh my goodness.  I got teary just watching them.

S had dances for each of the musical pictures of this little Winnie the Pooh book.  She was showing them off.  Her chubby little legs bouncing around.  The round mullet haircut.  The proud smile she had when she finished.

S came out looking for our approval.  She made great eye contact.  She wanted to show us things, and would pull on our hands.  She would nod her head or say no to questions from a tv show.  She would try to tell us what things were.  Meh-wah for melon, sie-puh for Swiper, pwee-tee for pretty, etc.  We saw her coloring with one hand, shaking the other in the same motion when she colored, how she never crossed the midline of her body with her arms or legs, she always ran or jumped.

There are a lot of red flags I saw that I didn’t think were as off back then.  Seeing it now, the evidence is stark.  I’m so glad we got S help when we did.  But all this talk of S possibly having autism and other developmental disorders…there was plenty of evidence that ruled that out back then, too.  I finally can start putting to rest those doubts of what I missed or what others could be wrong about back then.  Maybe she is, maybe she isn’t….who knows.  But here are HOURS of different things that tell their own story.

Sometimes we really do have to go back to our instincts.  I can’t change whatever has happened or been missed, if anything, years ago.  I did what I thought we needed to do at that time, given the information we had at hand.  I really don’t think things could have changed for us back then.  I honestly don’t.  S should have gotten early intervention much sooner.  I should have consulted a speech pathologist long before we did.  But again, based on the information we had, our situation then, I don’t believe it could have been any different.  Looking at these videos, it only reaffirms that.

Hit me with another surprise

Every year that S has been in school, whenever I have entered the classroom, she looks at me and bursts into tears.  I’ve never been able to figure out exactly why.  I mean, I take the extra time to shower, comb my hair, wear clean jeans without holes, and an ironed top!  Come on!  People should be loving me!  I could have been a complete embarrassment, shown up in sweats, a hat, a shirt and sweatshirt, only to find out I probably had a hole in my knee or near the crotch!  Ok. well, I TRY not to do that in public.   But anyway, she cries.  Her very first year, she didn’t.  Starting S’s 2nd year of preschool she did.  All the way through last year.  The spring visitation for the pre-K, S was actually ok.  The Valentine’s Day party I volunteered for 2 months before that was disastrous.  Her teacher told me it was probably better that I didn’t participate in the classroom.  sniff sniff.  Over the summer, I left the park a little later than I intended when S was at camp there, and she went hysterical when she saw me.  She kept pulling my arm, saying she was ready to go home.   I know my kids can fear me, but this is a little overboard.

So, when I found out that parent visitation for the Kindergarten was in November, I honestly started to stress.  It was the beginning of the school year, so S is still in transition.  I’m all over the place this year with one in the AM, and one in school in the PM.  I just didn’t know what to expect.

I arranged S to go to school with our neighbor, which she was excited about.  I took M to a friend’s house for a playdate.  She asked me if I was just going to drop her off!  M is usually pretty attached.  So just to drop her off, and for her to ask me that…it was a big deal.  I got to S’s school, and walked with a bunch of parents down the hall.

The kids were sitting on the rug by the board when we came in.  There were a number of adult chairs along the backside of the classroom.  There were a number of parents in front of me.  I could see that S was looking through them for me.  As soon as we made eye contact, she lit up a huge smile and yelled, “Hi Mommy!”  It was so cute.  Her cheeks flushed with excitement.   I think.  Come to think of it, the room was stuffy hot!  But I’d like to think it was my presence.

The kids were so cute.  They said the pledge, and sang a flag song (One I remember learning in elementary school.  Do they still teach those songs?)  Someone did the calendar.  Someone else did the weather.  They did the attendance, counted the number of days they’ve been in school.  They read a rhyming book.  Then broke up into groups of 4 to play a rhyming memory game.  The whole time S was chewing her fingernails, and fidgety.  Every 30 seconds, she turned back to look at me.  She would smile and wave.  Then her teacher or the aide would get her attention back.

During this 1/2 hour she never once whimpered or frowned.  She never raised her hand to answer any questions.  She was called on twice and knew the answer.  I was at least a little relieved that she was paying attention enough to know.

When it was time to leave, S gave me a hug.  She asked me for a kiss and nose kisses, when we rub our noses together.  She asked me if she could come.  I reminded her it was Friday.  She was still going to have free choice time and Art today.  Her face broke out into a gigantic grin, and she said, “Oh Yeah!  Friday is my favorite day.  I can’t leave yet!  Bye Mommy.  Don’t forget to bring my sister!”

So cute.  What a major step S has taken forward this year.  So much more mature.  I hope it lasts.

Continuing our perspective

So, I talked about how our day at Sesame Place was a fun, yet humbling experience for us.  We had another, but on a smaller scale.

The kids didn’t have school for a couple of days because NJ Teachers convene for workshops in Atlantic City for 2 days.  We weren’t able to coordinate apple picking with the family we have been going together with for years.  And it looked like we missed our shot.  I called an orchard and they said they still had apples yet.  So I took the kids.

It was cold and windy.  And there weren’t that many apples left.  But there were some.  The kids had fun on the hayrides, picking apples, and doing some of the activities there for the kids.  There was a huge hay stack they climbed, hay tunnels they crawled through, and a house full of corn kernels.  This was a huge sensory gratifying experience for S.  Both of them love to be in there, playing with it as if it was sand.  I could barely get them out.

Once S and M settled into the corn house, they each picked up a bucket.  There was a boy in there already playing.  He was a little taller than S, and he probably had 10-15 lbs on her.  His younger brother was coming out to go in the bounce house.  It looked like there was an older sister, probably around 12 there, too.  The boy wasn’t ready to come out yet, so his dad and sister took the younger brother and the mom stayed.  He got up and laid between my girls.  He speech almost had a swagger to it.  ”So, which bucket can I have.”  Of course, both my kids said, “Not this one.”  Before anyone could say or do anything, he got a little louder and said, “That’s not fair.  Well, if I can’t have one, I’m not moving.”

I was about to suggest to my kids to share one of the buckets, knowing full well that whoever gave it up was going to have a MASSIVE tantrum.  My kids had just gotten them.  Neither was going to give it up without a fight.  Before I could say anything, S said, “You can have mine when I’m done.  Maybe in about 10 min.”  I was so proud of her.  Well, it wasn’t flying for the boy.  He started yelling no.  Then M started to cry because he had been sitting on her foot and when he yelled, he was bouncing on it.

This boy clearly had some kind of special needs.  I’m no doctor.  But definitely something going on.  His mother started getting upset with him, telling him to leave my girls alone, that he’d have to come out if he didn’t listen to her.  She wanted him to move over to give them some space.  He eventually complied.  2 littler boys came in and when one of them started putzing with the dump truck, this boy went nuts.

Before I had S, even when I was a teacher, I am pretty sure what would have been going through my mind.  As educated as I thought I was about different needs or sensory issues, I really knew nothing.  And, I’m so ashamed to admit this, but I probably would have thought, “Dear God, please don’t give me a child like that.  Or please let me be a stronger mother than his is over there?!!”  You know what I’m talking about.  Before you have kids, you are so judgemental.  You can’t help it.  Once you start having kids, you start to realize it’s not all in your control.  Once you have 2, you see for yourself, they are night and day, no matter how similar you are raising them.

Now, I could see what the problem was.  He was rigid, and inflexible in this particular situation.  He thought he was being fair by asking which bucket he could have.  They probably work it out that way at home or in school.  My girls answer was unexpected, and he didn’t know how to deal with the new set of rules they just implied on him.  I’ve seen it happen with my own kids.  When an outside person doesn’t play by their established rules, it upsets the dynamics ten fold.  And with each new addition, it was making it more chaotic for him.  Then you have his mom, who is supposed to be on his side in his mind, start threatening to take him out, her own voice embarrassed and aggravated, well….it’s just a downward spiral.  Things were coming out of his ordered world, and it was unsettling.  He hasn’t figured out how to deal with that, yet. (Hell, I know plenty of adults who still are unraveled and crazy when things don’t get their way.  There’s therapy for them folk, too!)

The mother went to go grab him and pull him out.  He was kicking and thrashing.  I could see he was too heavy, too strong for her.  She had to leave him.  She didn’t have it in her, either, to make that scene.  I didn’t blame her.  She turned to me and said, “I try to have patience, but I don’t have any.  He has behavioral and emotional issues.  It’s hard for him to be out.”  I told her she didn’t owe me any explanations.  I actually thought he was fine and manageable most of the time.  The dynamic of the 2 didn’t seem to help.  But again, who am I to judge?  S and I are intense, and we can mentally and emotionally kick each other’s asses on any day.  The mom continued, and I just told her that I get it.  I really do.  Kids like things in their control and by their own rules.  When you are outside, in public, it all changes, creating stress, for everyone.  The more stress they feel, the more they are going to react.  She looked at me…stared actually.  ”You got a kid with issues?  Did you leave them at home to have an enjoyable day with your other 2?”  It took me a second to realize what she was talking about.  What was I supposed to say?

I am not one to divulge a lot of information to a stranger, either.  But I said, “My older daughter has special needs.”  The look in her eyes went from surprise, to a softening.  Then she glanced at S, and hardened.  ”She doesn’t seem to have any needs.  She’s totally normal in there.”  I hate that comparison.  I don’t mind it when people are complimenting you.  But this wasn’t one of those things.  It was a how can you compare yourself to me sort of take.  And I wasn’t really comparing.  I was just saying, hey, I understand it’s not easy.  All I could get out was, “Isn’t everyone different how they wear it.  Some let it all hang out, others may be more subtle.  That doesn’t make them all just fine and typical.”

She walked away from me in a huff.  No biggie.  We’ll probably never see each other again.

I was humbled again.  S has really made a ton of progress.  There will be good days and bad days.  She’s gotten so much better out lately, too.   All these “mystery trips” her neurologist told us to take, where we don’t tell her where we are going.  We just go and show up.  Always something fun.  That way, S realizes that we don’t have to know everything.  The unknown can be fun.  It’s helped tremendously, esp in these situations.

Wouldn’t you know it, but before we left, S took a pony ride there.  She has developed a real fear of dogs, and now cats.  Any living, moving animal, that is not caged, she is skittish about.  Huge move for her.  But she rode it and had fun!  Another milestone checked.

Halloween Extravaganza at Sesame Place

The Philadelphia tri-state area has this organization called Variety.  They are a group that provides camps, activities, resources for children with special needs.  We don’t live in that area, but all areas should be so lucky.  They are unbelievable.

Every Halloween, they sponsor the Halloween Extravaganza at Sesame Place.  During the fall, Sesame Place hosts this event to the public during the weekends of September and October.  This year, the day after Halloween, Sesame Place opened its doors to families of special needs.  You register at the end of August/beg of September.  There are limited number of tickets, probably to keep the park from overcrowding.

We signed up right away.  We thought both girls would have a great time.  Our expectations were high, and we were not disappointed.

We were afraid that S would have outgrown the Sesame theme.  It’s been years since she last watched it.  And M, having to grow up with an older sibling, sort of skipped right over that show.  She saw a little, and is familiar with some of the characters, but didn’t really get into it the way S did when she was her age.  It wasn’t that way at all.  S looked at it as a happy amusement park with characters that were once beloved to her, but she could still appreciate.  For M, it was all right down her alley.  She was fine with it all.  They had such a blast!

We got there about 10 minutes before the gates opened.  There was still a line in front of us, but it wasn’t too bad.  The girls wanted to start on the roller coaster.  My husband wanted to move to the back first, but I told him the roller coaster was likely going to be really crowded later.  So all 4 of us took it.  Wouldn’t you know it, but both kids were thrilled.  Rides play into a huge part of S’s sensory needs.  She’s a thrill seeker, loves to feel the wind on her face.  If the ride twirls, even better.  Spins, forget about it.  You’ll never get her off.  M is a little less so, but still appreciates the rides.  M closed her eyes through the whole ride, but came out with a big smile.  I could hear S giggling through the whole exhilirating 20 seconds!

On and on, we moved from one ride to another.  It was a chilly morning, but the kids didn’t care.  We caught 2 shows, too.  S has never been one to really like shows.  We saw one Elmo Live, which was Elmo’s world on TV to a tee…only live.  They loved it, especially M.  Later, we saw Abby Cadabby, a new character.  She dresses in a tutu with wings.  She looked straight from their fairy/butterfly princess costumes from last year’s Halloween.  She sang and danced.  Oh, they were drawn in from the beginning.

Because this was an event for special needs, while it got crowded, it wasn’t what it could have been when it was open to the general public.  There were trick-or-treat stands throughout the whole park.  The kids were all wearing their Halloween costumes, too.

From a parent perspective, we were in awe.  Everything was being catered to us and the kids.  People were helpful, and parents were helpful to one another.  It’s a humbling time when we are apart of these kinds of events.  The Autism Speaks Walk is another one we participate it that’s humbling.  You look around, and what you see is incredible.  Day to day, my husband and I are stuck with just seeing what’s going on in our immediate family.  The ups and downs, the ruts and the leaps, we see it through just our eyes, through what we’ve experienced.  It certainly weighs on us.  But then you go into something like the walk or this extravaganza, and you just see things on such a larger scale. The big picture is finally captured for us.  My goodness, the extent of the severity of some of these children, it’s absolutely heartbreaking.  Knowing myself what we go through, to see what these other families go through…..god bless them all.  What do I honestly have to be complaining about?  My child is communicating with words.  She’s potty trained.  She’s learning all the time.  She can walk fine on her own, not wheelchair bound.  She has a whole world inside her head that she can’t get it all out, but she can express many things in it.  S smiles and is happy most of the time.  She can walk into these parks and have an amazing time, instead of being overwhelmed by the size, or the crowd, or the noises.  We saw all kinds of different children with mild disabilities/disorders, to some very severe ones.  Physical deformities that are hard to drag your eyes away from.

I looked at my own 2 kids, who were all smiles, all day.  I just felt blessed.  Yes, we deal with our own hardships, and life does suck somedays.  But wow, could it be so much worse!  Absolutely.  Could it be better?  Sure, but doesn’t it get better year to year?

Thank you Variety and Sesame Place for making this particular Halloween so special for our family!

Halloween marks a new page

Halloween is one of those holidays I used to think was such a special kid holiday.  Winter holidays are way high, but Halloween?  Come on.  The one day a year it’s okay to dress up and be crazy.  People expect it!  You ring doorbells, say a cheesy line, and they reward you with candy.  (We won’t go into those people that gave out raisins, apples, pennies, back in the day…).  So when S was a baby, her first Halloween, we dressed her up as a lady bug.  She was 10 months old, had no clue of what was going on.  But we didn’t care.  She was oh so cute, and we were having out fun.  As we projected, we looked forward to the years of dressing up and trick or treating!

S’s 2nd Halloween was in a new house.  We had left the urban jungle to the suburban gardens…so to speak.  Our neighborhood has a lot of houses, and on Halloween, they block the road.  At 22 months old, S was dressed as a Hershey’s Kiss.  She was very suspicious of the costume.  When she walked out and saw about 100 kids aged 5-15 walking on the lawn and streets, she most literally screamed.  It was too much for her.  S went to one house, crying, and spent the next 2 hours on our swingset on a swing.  That was her Halloween.

Our 3rd Halloween, it was M’s turn to wear the baby ladybug costume.  She sat in the stroller at 7 months old.  S tentatively made it to about 5 houses, and went back to the swing set.

Our 4th Halloween, S was a princess.  M was a doctor.  We ordered toddler scrubs.  S made it to about 15  houses and said she was tired and wanted to go home.  M at 19 months really was intrigued with the candy process.  But she had a better time sitting on the driveway with my husband who was passing out candy.  She put one piece in the trick-or-treaters bag, and one in the back of her stroller.  She had quite a collection after about 30 kids, and was unwilling to relinquish it to the main bowl again.  Some things will never change with that one.

S’s 5th Halloween, last year, they were both butterfly princesses.  S was at a new school where she was actually allowed to wear her costume to school and participate in a small parade.  Of course, I missed it, but heard she did okay.  S made it to about 25 houses before she wanted to stop.  M, on the other hand, went to about 50.  After she got some candy, she would take one out of her bag and eat it on the curb.  She did this after each house for the last 10.  It took us forever to get home.

This was the first year, I saw S truly excited for Halloween.  I made them decide early, and got the costumes.  I talked a lot of about not changing our minds.  S was a fairy, and M was Alice in Wonderland.  S had her parade the on Friday.  She has always cried when she sees me at school.  So I never volunteer.  She actually asked me if I could come to the parade.  I nearly dropped the juice I was pouring.  I asked her if she really wanted me there, and if she was going to cry.  She looked at me like I was growing another head.  ”Mommy, yes, can you come?  I never cry.”  Lies…..lies!!!  Anyway….

I got a great spot for the parade.  I nearly held my breath when I saw her.  She was walking with her class, and they were all so cute!  The babies of the elementary school.  S saw me, her face lit up, and she yelled, “Hi Mommy! Hi M!”  There had to have been 100 parents out there watching.  She should have gone out crying and running the other way.  But no, she was happy and marching.  Later, they lined up and danced the monster mash as a whole school with the teachers.  It was so funny!!  Thriller moves were thrown in there, too.  What a laugh.

Halloween Saturday, S had her soccer game.  And yes, folks, she was back on the field.  Moved her feet a little more but stayed away from the play.  It’s okay.  She was out there, again.  Little anxiety about it, too.  She just wasn’t going for the ball.  We rushed home for lunch, and went right back out for a Halloween party my neighbor was throwing.  It was crowded.  About 20 kids, almost that many adults.  The decorations were overwhelming.  The steps down to the basement where pumpkin bowling was set up was seriously spooky.  But both girls managed.  They had their fun, took it all in, and played the games.  We left after almost 2 hours.  We thought we’d give ourselves another hour, but one of our neighbors wanted to head out trick or treating.  So we went.  An hour and a half later, the girls began to drag.  But I was so proud of S.  She was right there with her sister and 2 friends.  It was on and off sprinkling, and she didn’t care.  She was loving it.  She was excited that her pumpkin was almost full!

It’s always been amazing to see what a difference a year makes.  But honestly, I couldn’t have been prepared for this.  This year was the Halloween we’d always thought we were going to have before we had children.  Each child comes into this world totally different than you expect they will be, and we have to adapt our expectations.  When your child is born with special needs, it’s a lifetime of adaptations and acceptance that life is just not what we thought it would be.   It’s not any worse or better, most of the times…it’s just different.  I feel like this Halloween was what we dreamed it would be.  (except we didn’t anticipate how tired my husband and I were going to be…not in our dreams.  We know better now!).  And we can feel happy of where we are today.  Way to go girls!!  Mommy is so proud of you both.

instincts still there

I had my suspicions that S’s homework last week and one this week wasn’t quite right for S.  By that, I mean, the presentation/layout of the homework was confusing for her.  It wasn’t that she didn’t know the concepts.  At the time, I wasn’t sure.  I had to find out.

I sent an email to S’s SLP, Step.  I was pretty sure that the concepts were ones she concentrated on it so intensely.  She was pretty sure that S had these concepts well under her belt.  She suggested maybe it was a new way, a new model, or shown confusing for S.  She asked for a copy of them.  I made a copy of each, and dropped them in her mailbox that day.  (one of the perks for being a neighbor….wish there were neighborhood discounts, too.  I guess they need to make a living).

When we went in to see Step this morning, she had planned the session to the last minute.  She made it visual, and tactile.  She gave S a box of crayons and told her to count out 10.  She had her put them in a box.  She had her count out 6 and put them in a box next to the other box.  On a piece of paper, S wrote 10, and then 5.  The taped them in front of the box.  Then S was able to label which had more.  Step transferred the information onto paper, using dots to show it.  They continued using magnets, checkers, beads, and then eventually dots.  She designed a page similar to the homework page, and S was able to do it all independently.

I am so grateful we have great people working with S.  She’s been with S for 2 years.  I can’t even tell you the progress that we’ve seen over the years.  Sometimes I wondered if it was just maturity or the therapy.  Was it really helping?  Were we wasting the money?  Obviously, these thoughts were fleeting because we never left.  And to be honest, I never really considered it…for real.  We may be in these therapies for YEARS.  and that’s okay.

When I saw S break it all down this way, it was incredible.  It showed me a few things.  Yes, S understood the concept of more/less, same different.  She doesn’t like to learn the same thing in a new way.  She likes to stick to how she learned it the first time.  That’s how she feels safe and confident.  However, S was able to learn it in a new way.  Step’s approach was visual, hands on, tactile, definitely multi-sensory.  By changing each manipulative, she was challenging S to try it a little different.  By transferring it to dots, she was teaching S to record what she was doing physically could be recorded onto paper.  She showed her relevancy.  Doing it 5 or 6 times, S was able to catch on, and go with it.  She was labeling it all herself.  The high 5’s and constant praise, even in the wary phase when she was unsure of what the expected answer was, built S’s self esteem.  It gave her the confidence to push on and answer more effectively and correctly.  Giving S her version of the homework page brought the lesson back to where it started, and showed us all that the concept wasn’t the mystery.  It was the expectation and presentation of the assignment that was the bigger problem.

I could tell that the homework pages were too visually overwhelming for S when I did them with her.  I tried to cover it up except for just where S was working.  It seemed to help.  I hadn’t considered the presentation, or S’s confidence, and how that would all play together.

It makes me a little wary for things to come.  At least, we know that we have to consider these conditions in S’s learning.  But it makes the learning and the work that much more for all of us.  Yet, once we give her that build up and the confidence, she shows how well she demonstrates her knowledge.

It’s a positive feeling for myself to know that after all these years, all these decisions, all the doubts, I still have my instincts.  I’m glad I took it straight to Step to find out exactly where S stood on these concepts.  And I’m incredibly grateful that she took it into her own hands to nail it on the head what we needed to do.  She communicated it to us in such a great manner.  Finally, S left feeling great about her session and about her homework.  All the way around….pretty great.

how far to push?

S gets homework every night in Kindergarten, well, Monday through Thursday.  It’s pretty simple.  But I’m surprised by some of the concepts they are already hitting on.  I taught Kindergarten for 7 years, but this is impressive.  For the most part, S seems to be managing it well.

Last week, there was a math page that dealt with the concept of more/less.  This week there was one on same/different.  Both of these concepts are pretty simple to the typical child.  For S, we had to work it many different ways for her to really understand and be able to expressively use it correctly.  I thought she had it.  Both of these pages gave her a lot of confusion.  She was so unsure of herself.  There were a lot of problems on the page, so I think visually, S was overwhelmed.  But I am wondering if it was the way it was all presented.  I tried to do it in another way after she finished, and she definitely understood with me.  So now I’m confused.

Both times, as I helped her through the page, I could visibly see S start to shut down.  As she wavered on her answer, she guessed even more.  She had no confidence, and was looking to me for the right direction and answer.  By the end of both, she started to cry and asked to do something else that she enjoyed.

S is young, and homework is new for her.  But there is a deeper problem that I see projected from all of this.  If she isn’t confident, and she is unsure, S has a hard time pushing through the work.  Once she starts to shut down, you lost her.  Her concepts and work are only going to get harder as she gets older.  How is she going to learn to persevere to understand.  We all have to walk away when we get frustrated, but we have to jump back in, too.  She can’t cry everytime something is hard for her, you know?  But then again, she is only 5.  So we cut her slack.  I am fine rewarding her with things she likes to do.  But I have a problem with handing it to her when she just wants to quit.  Is it me?  Is it my expectation?  What’s the best way to know how to help her?  I’m a bit torn.  I’m hoping anyone can shed some light.

On the flip side, I’m happy with the progress that S has been making over the past month.  A lot of things have been coming together.  It’s nice to see her so happy going to school and making friends.   It’s always an up and down, isn’t it?