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?

Her first game

I don’t even know what week we are in for soccer.  There have been a few rain outs, and 1 game we didn’t go to because I was out of town.  My husband thought to do something else with the girls.  Every week, S goes to soccer in tears.  She hangs on the sidelines, refusing to play.  But each week, the resistance is just a little less.  We have made it to 1 practice.  S seems to like the practices better.  It’s so hard for me to take her to practice, though.  M has boycotted her nap, pretty much, and is dog gone exhausted.  To manage 2 crying kids, in the cold, as it gets dark is just too much on me.  (Practice was at 6pm and has just been moved up to 5:30pm since it gets so dark).  The agreement was that my husband would take her when he could.  But getting out of work that early for practice is near impossible for him, especially lately.

We had the 9am this weekend.  I really thought it was going to be called off again.  It was so rainy the night before.  It was supposed to rain all day.  No rain at 8am, so game was on.  The field was soaked.  Good thing I bought S cleats this year.  Even if she stops playing in November, it’s worth not seeing her react badly to her favorite sneakers getting all wet and muddy.

S went into the game.  She got on the field.  Pass that, she did absolutely nothing.  She didn’t move her feet once.  She stayed, biting her fingernails, staring around, never even positioned her body facing her teammates.  BUT she went in!

Both coaches agreed.  It was a huge step for her.  Not a single tear was shed before or during the game.   Of course there was whining (isn’t there always whining, even under the best of circumstances??? why is that?).

We will see what happens from here.  But FINALLY she has started letting go, just a little bit.  She’s just begun to realize, it’s okay.  I’m okay.  I’m okay out here among these crazy girls flinging mud up from their cleats, chasing after a ball, splashing through huge puddles, and barreling over others.  No big deal!  S has started to understand, I’ll be okay.

Other moms were proud their kids were scoring goals, or rejecting goals.  Me, everything is about the small victory.  She agreed to walk onto the field without us.  She did absolutely nothing, but I was as proud as if she scored 100 goals and turned to someone to say, “You want some more?” with the proper headshake that would go with it.  Proud.

How far would you go?

You know, my husband and I have tried to make decisions for S based on what would be in her best interest.  But sometimes that comes into conflict with what is best for this as a family.  How much money and time and effort do we pour into Maddy’s help and how thin do we spread ourselves elsewhere?  We still have another child to consider.  A mortgage.  The works.  Just like everyone else.

I just finished reading My sister’s Keeper.  Heartwrenching novel.  A young girl, Kate, is diagnosed with a rare leukemia at 2.  They genetically engineer, Anna, who is going to be Kate’s blood cord donor.  That’s all it was supposed to be.  Later, it led to donating platelets, bone marrow, and eventually a kidney.  At 13, Anna sues her parents for medical emancipation because she didn’t want to donate the kidney.   It wasn’t like a typical teenage rebellion where she didn’t want to be sliced up to help her sister.  But a real belief with she wanted some say, some control.

S’s diagnoses are not something completely curable.  She will work through everything, and we’ll help her the best way we can to adjust to the world and her surroundings.  Most days, I feel optimistic.  Some days I am downright depressed.  But if I was led to believe that some kind of surgery, transplant from a genetic match what solve most of her issues, would we do it?

I asked my husband, who is quite conservative and I thought he’d say no in a heartbeat.  But he actually stopped and thought about it for a moment.  The repercussions of this baby would be huge.  The responsibility we’d have towards him/her would be profound.  How do you explain that years later?  And if you thought it was just one donation, not many over the course of 13 years!

How far do you think you would go to help the children that already exist in your life?  food for thought.  More on this later.

Step forward

I was watching S as she was winding down reading books before bed the other night.  It made me think of how she has been in the past week.  Overall, tantrums have been limited, her temper hasn’t been as short, and she has seemed comfortable.  Content.  She’s been happy about going to school, and she tells me about what she likes about school.

I was unsure last week when it was picture day.  S had her pictures for her soccer team the weekend before, and she freaked out.  Granted, it’s about soccer, and she’s still lukewarm on the whole team thing.  I still didn’t know how she was going to react to pictures taken in school.  I let her teacher know, just an fyi, about her adversity.  Actually, every other year is a great year for pics.  The years in between lead to red faced, puffy eyes, and no smile for the year’s photo.

All morning, S told me she didn’t want to get her picture taken.   When she came home, she said she didn’t cry.  Her teacher sent an email saying that S was great.  In fact, after talking to some parents, there were other children crying and didn’t get their picture taken.  Go figure.

S still exhibits signs of anxiety, still has meltdowns, and gets testy.  However, the level and number of occurances have gone way down.  We keep trying to take steps forward. And for right now, we are.

Not your own kid

So we went to a friend’s house last night for dinner.  They have 2 kids, a boy and a girl.  Both kids are the same ages as S and M.  They all get along great.  We met them when S and their boy, Cort, were 20 mnths at swimming.  They live nearby, too.  Their girl, Hal, and M are great friends.  Everyone is so comfortable with each other that fights rarely come up.

S was so excited to go to their house.  The first 30 min were fun and with lots of laughter.  We got ready to eat, and the kids sat down first.  Hal and M went together to sit next to each other.  S immediately said that she wanted to sit next to Cort.  Something you have to understand about him is he is sweet. Absolutely sweet and hysterical.  But he pushes the bar every time with people, esp adults.  The constant negotiator, he knows he can go far if you let him.  As soon as he hears S say this, he starts playing musical chairs.  Everytime he sat down, S followed to the seat next to him.  Then he would get up and change seats.  She would follow again, only to have him move.  This went on about 5 or 6 times, and S was starting to look frustrated.  I told her to go and sit next to Hal or M, and she didn’t want to.  I could tell she wasn’t going to settle for anything else.  This was her buddy.  I told Cort that S wanted to sit next to him.  He said he didn’t want to sit next to her.  I asked him why because she had been looking forward to playing with him all afternoon.  He said it was because he wanted to sit next to M.  I told him he could sit next to both of them, and he said he only wanted to sit next to M.

Here’s where it gets sticky.  Cort is not my child.  I can’t make him do anything, nor do I feel comfortable pushing him too much.  His mom was inside getting something and his dad was working the grill.  This was going to come down on me.  But I also knew he was just trying to get a rise out of all of us.  The more S would push to sit next to him, the more he was going to repel.  S doesn’t have the finesse or understanding to get his game.  How far do I step in?  My responsibility is to my own child, and look after her well-being.  I didn’t like what I was seeing, and I absolutely didn’t buy the whole this sister over the other.  That is one thing I won’t tolerate.  People consciously, openly, verbally, in your face, choosing one sibling over the other.  It’s one thing when they pair off, or if M wriggles her way into the older crowd.  But this, no way.

So here’s what I did.  I still question my methods, but I sent the message loud and clear.

I told Cort that what he was doing was hurting S’s feelings.  She had been so excited to be with him.  He could sit next to both M and S.  But choosing one wasn’t okay with me, S or even M (which I really don’t know how the kids would have settled…but my guess).  I explained very nicely that we don’t choose siblings over each other.  That’s hurtful.  Either we were all together, or we wouldn’t be able to come back again.  If S’s feelings were hurt, esp because of favoring over her for M, she wouldn’t want to come back.  And I told him my husband and I had to agree with that.  And that M loves her sister and wouldn’t want that either.  Cort studied me for a long 30 seconds, and succumbed to sitting between them.

I feel badly that I said that to him.  But I don’t think I was really bluffing.  Obviously, I would have had to have a longer conversation with his parents, who I know would not tolerate that behavior on any level.  Their sons.  They could be peeved with me, too, but they have steel grips on their kids.  I thought I could be tough.  They don’t give them an inch.  I hate being that way to kids, but again, I was trying to find a solution, and make him understand, too, that his game was going to go nowhere.

How do you handle situations with someone else’s child?????

When is it too much?

Ok.  Fall soccer.  We just had our 2nd game (well, 2nd because the first weekend was a rainout and the second weekend was a Jewish holiday).  It didn’t go well.  The first weekend, S was hysterically upset about going.  20 min she was bawling. HARD.  She eventually settled down and sat in her daddy’s lap for the rest of the time.  Last week, S went to her first practice.  She doesn’t have practice until 6pm on a school night.  The poor thing is exhausted.  It’s getting cold and darker, too.  She was initially upset, but then didn’t mind it so much.  She ran a few drills, and kicked a ball on the side.  We thought that was encouraging.

This past Saturday, it was picture day.  She had to go up to the middle school for pictures.  My husband said it was a mad scene.  She wouldn’t even go in through the doors to the gym.  She went crazy.  Poor S.  He bailed on the team photo.  He took her out, and stopped by a local diner for a bite to eat.   He took her to her game which was a little later.  She had gotten so worked up from the pictures, my husband didn’t want to push S too hard to play.  She kicked a ball on the side with him for most of the hour, but downright refused to play.

On one hand, S isn’t crying so much about having to go to soccer.  She gets bored sitting on the sidelines and gets whiny.  However, she isn’t ready to play yet.  She did this last spring.  It took about 6 games to get in there.  We are hoping for something similar this fall.  The fact that the split Kindergarten soccer by gender, and it’s girls only, we thought S would have been less intimidated.

Our only point in pursuing soccer wasn’t to make S an athlete or superstar.  We just wanted to expose her to being apart of a team, and to give her these experiences so she knew they existed.  We waned to have her try something that was a bit uncomfortable for her, and something that wasn’t so easy.  But have we gone overboard?  I’m not one to quit on something we sign up for, in the hopes that she comes around at some point.  I like to have her see things through.  If S had her way, she would teach herself to do what she wanted to do, and never leave the house.  I don’t want to shield her like that.  The only way to really learn is through experience.  Difficult or easy, the more we put ourselves out there, the more we are building on experiences.  That’s life.  But if it is causing extra anxiety, and she’s still not enjoying herself, should’t we just stop?  But then I wonder, if we stick it out, maybe she will find that she does like it. She may not be great at it, or be the strongest contributor to the team, but she would be apart of the team.  She would make friends and connections that she wouldn’t have otherwise.  But is it worth it to hold on to see if that happens?  Or do we cut her loose and let her find her confidence, settling into her new schedule.

S is still in transition.  She is still getting used to a new school, new grade, new teacher, new friends, new expectations.  It’s not easy, and she’s handling that part well, for the most part.  Soccer is the only extra we added to her schedule.  But now I’m beginning to wonder if it wasn’t too much.

A reminder

You know, the whole process of raising children is full of ups and downs.  It’s unavoidable.  As a parent, you are given absolutely no manuals or instructions or road maps on your journey.  You can buy an expensive car or electronic and get 1000 page manual.  But what is there when you have a baby.  There is a huge selection at your local Barnes and Nobles, but I’d have to buy every damn book, and it isn’t going to cover everything I need, nor will it give me a definitive, always working answer.  It is what it is.  A web of confusion that we all feel through as we go along.  You know, you would never take that kind of chance with your most priceless items or profession.  But we have no choice when it comes to our children.  There just isn’t any one if A, then B book.  No child is the exact same as another, and they are forever changing.  Just when you start to get a pattern and figure it out, they change.  So we try something else until it works, and it works and then they change again.  FRUSTRATING!

Anyway, add a child with special needs into the ordinary chaos, and now we are really grasping and essentially, like the title of my blog, we are flying blind.

I’m pretty good about staying upbeat and and move forward.  I do my best to focus on the positive and always look at S’s progress. Month to month. Definitely year to year.  She is a different child, able to do so much more than she was a year ago.  However, we still struggle.  And those periods of struggle come and go.  And while we are in those lows, it’s difficult for me to be upbeat and positive.

I’ve been in a bit of a lull lately.  I’m not depressed or really stuck in a rut.  But I’m not upbeat.  And if I am, I’m totally faking it.  S looks to me for stability and positive emotional vibes.  The more insecure or upset she gets, the more I have to be calm and work her through it.  Sometimes, S does great, and shows that she can be more flexible.  Other times, she shuts down, and wants to battle it out.

I’ve been watching her behavior, and realized it’s all the same behavior through the years, it just evolves.  S used to throw herself down on the ground hard, and now she just sits down or lays down.  Refuses to get up.  She used to run her legs in place, and now she jumps up and down as hard as she can.  She used to bang her hands on her thighs, and now she bangs on tables.  I’d like her to have an outlet for her frustrations, but an appropriate reaction.  But what’s appropriate?  She has developmental delays, and her emotional development seems to be delayed, too.  So do I hold her to a standard of what a 4 or 5 year old, or to the standard of an almost 6 year old?  We say that kids are kids and we don’t compare them to others, but let’s be honest.  Everyone does to a certain degree.  And the world at large certainly does.  So what am I really supposed to be doing?  And here is where I start getting confused.

I can handle S’s periods of meltdowns, when she is transitioning.  These are not easy weeks, months, etc.  It’s hard on all of us.  But we have them.  I grow to expect them.  But when things aren’t working, and I begin to get unsure of what it is I’m supposed to be doing, everything goes into doubt.  If I let the behaviors continue, it’s doing an injustice to her, no?  She can’t believe that how she is behaving is age appropriate, or acceptable to others.  But she should have a chance to express herself and be able to vent, right?  And even though we feel so great for the milestones S has acheived, I see this mountain still ahead of us.  (I’m a terrible parent, aren’t I?)  Then I start to wonder about the decisions we have been making up to now, have they been the right ones?  What about the ones we are about to make or will make in the future?  If it were just about me, then it would be on me.  But this is about my daughter, and what is actually right for her.  And who is to know?

I guess, I’m wondering from all you parents out there….how do we know?  And how do we get back our semi-confidence about raising our children?  To be honest, I really don’t have the time or energy to doubt myself.  But it’s there.