The last steps

5 years ago, when I was just pregnant with M, I started researching area pre-schools for S.  We had just moved in the summer  to the area.  I wasn’t ready for suburban living, nor was I ready to look at pre-schools.  And I was definitely not ready to manage 2 kids!  But, the fall was ending, and I had heard that pre-school sign-ups would be opening in January or February.  I wanted to tour and take a look at who would be spending the most time with my daughter, outside of our home.

I saw a few schools.  Based on the recommendation of a good friend, I went with WH.  I wasn’t disappointed.  S cried and would cry at drop off for the 1st month.  But she always came to me with a big smile at pick up.  She made sweet friends.  Her 2 teachers were the type that just accepted the whole child, with everything they came with.  I loved them.  The teachers, the school, those families…they made that first child, first school experience incredibly rich and memorable for me.  I knew one of the other families in our class going in.  And met 1 more at the orientation in May.  The friend, I knew, Kesp, was in my playgroup.  She and I were getting closer.  She was pregnant with her 3rd child, due 4 months after me.  Her son and S were good buddies at first meeting.  They bonded through that first year.  And the next year.  The other friend, Jefa, was pregnant with her 2nd child 3 months behind me.  Her daughter also bonded well with S that year, and the next.  We continued a playgroup for the younger children the 2nd year of S’s preschool program with other moms. To this day, Kesp and Jefa and I remain close friends.  Our kids still have their close connection.  They all go to different schools but maintain close ties and many playdates.  Jefa and I moved S and her daughter to the public PreK program last year.  So we saw each other then.

S leaving WH was a hard transition for me emotionally.  It was all we knew.  And I was sad to see S separated from her friends of the first 2 years.  But it was a necessary change with S’s growing issues.  And in hindsight, it was the best move for us.  But also in hindsight, WH was the best place for us.

M started at WH the year S left.  She had the same 2 teachers that S had started out with.  What a class they had.  I had thought it would have felt different the 2nd time around, with a different child.  It was just as equally magical and lovely as the first time around.  I could not have asked for a better school experience for either.  M never even cried being dropped off.  She was familiar with the school having gone in and out of it since she was 6 months old!  She saw one of her teachers in the park a lot since she ran the summer rec program in the park near our home.  We felt like we were walking back home again.

The 2nd year did not disappoint, either.  M has made such strong friendships this year.  Learned to share, still learning to use her words, but I have seen so much growth from her this year.  Her teachers, while loving S, did have difficulties really knowing how to handle and address S’s anxieties and lack of language.  They had a different experience with M, too.  They took on her personality, pros and cons, and nurtured it and let it grow.  Because I wasn’t hung up on and in turmoil myself about M the way I had been with S at that time, I allowed myself to really enjoy her experience, too.

The last days of preschool, we were saying bye, and it hit me.  Wow.  This was the last time I would be walking through WH in the capacity I had been for 4 straight years.  It hit her teachers.  And then right at the end, we bumped into M’s first year teacher.  She gave M a big hug and said to have a nice summer.  She looked at me, and waved, saying, “I can’t wait to see you in September.”  I felt bad, but said we weren’t coming back.  Surprised, she took M in for a longer hug, and then the tears started in her eyes.  Oh, boy…here came the wave.  The tears started in my eyes.  This is one of the loveliest people you can ever meet. A grandmotherly lady, with an incredible heart and so much overflowing love to give to the kids.

As we walked away from the building to the car, I looked back.  Bye WH.  We may even be back for an enrichment or 2.  But at this point, we have no more children to send.  It has been an amazing 4 years here.  My kids both have fond memories and great friends.   WH has been good to us.  We will miss the WH families and teachers.  It’s time to move on. And it’s nice to be able to move on with good memories.  knowing in our hearts that this was the perfect place for us for the past 4 years.

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.

Woah, our first call

So, we have been in school now for 2 weeks.  M is having the time of her life.  She has honestly come into this place in life of near euphoria.  She just has an extra spring in her step.  She is so happy.  She loves school, likes her teachers, enjoys her friends.  She’s the type of girl that can make friends with anyone on the playground, especially girls.  She’s very social, and surrounds herself with good people, most of the time.  She is loving her dance class, too.  It’s absolutely adorable to watch her and her friends.

S is in better shape than she was 2 weeks ago.  She gets occasionally tense at having to go, but she is generally fine about going.  She’s not ecstatic, but she’s not dragging her feet, either.  She’s coming along, though.  She always comes out of school happy and excited, and I don’t think it’s just because school is out for the day.

S’s teacher called me last night to let us know how she is doing in school.  They aren’t seeing any anxious behaviors nor tantrums.  She is compliant, happy, giggles a lot, and interested in making friends.  There are a lot more transitions in Kindergarten, too.  They leave to have music, art, library, and gym.  Plus, S gets pulled out for speech therapy and OT in school, too.  Yet, she is okay doing all those things.  She can’t be bothered to stop her drawing and get in the car to pick up her sister at home, but she’ll go along with the school routines.

Overall, I’m surprised by 2 things.  1.  I can’t believe this is the same child.  I know that home and school are totally different, but wouldn’t you think that if I’m seeing tantrums and craziness about having to go to school…it would trickle out a little over there?  This is the way that I would want it:  For S to let it out at home where she is comfortable, rather than freak everyone at school out with a meltdown.  Still, my husband and I looked at each other and asked, “Is this really our child?”  But year after year, teachers have told us how they don’t see that side of S.  She’s generally a happy girl, doing what she can do keep along.

2.  I am still impressed that this teacher has reached out to us and called on her own will.  Really.  As a teacher, I always called parents within the first 2 weeks.  As a parent, that has never happened.  I emailed Ms. B last week, just asking if all was going well, how the transition was going, etc etc.  She did write me back that things were progressing along.  I thought it would have ended there.  The school gave me such a hard time in the spring when I was trying to nail down in writing the school-home communication piece in S’s IEP.  They just didn’t want anything binding.  Yet, here is a teacher taking time out of her evening (And she has 3 kids of her own!) to call me and bring me up to date.  We spoke for 20 min!  It’s absolutely incredible.  I feel blessed that her teacher last year was invested in S and knew what kind of teacher S would need to work with.  And the 2 are still talking.  So she was invested during the year, and still checks up on S.  And her teacher this year is already so onboard with her.  She has made S feel apart of things from day 1.  I just hope we continue this streak.

It’s only been 2 weeks, but I feel good about her placement.  Actually, about both of their placements.  At least for now!

Your actions/words do have an impact

Raising children bubbles up so many different emotions.  For me, I get the whole range.  And sometimes, you get a lot of a just a select few emotions.  Currently, with M, we are dealing with a lot of selective listening.  I know she hears me, and just ignores my directions quite a bit.  We have tried reward systems, which work well.  But I tend to drop the ball on continuing that day in, day out.  It’s my fault.  I also think that the system grows old and stops motivating M.  I’d like to get M to a point where she is able to follow the directions through the first time (or even the 2nd or 3rd).  It’s when I have repeated myself 4 or 5 times, and she runs away from me because she doesn’t want to be bothered at the moment.  I could be asking her to put her shoes away, or to pick up a few toys she’s left on the kitchen floor.  If she doesn’t want to, M believes she just doesn’t have to.

Bottom line is I am the one that gets frustrated that she just doesn’t listen to me.  It’s a problem in public when she tries to run off and do her own thing, like race down the aisles at the grocery store and bangs into someone else’s cart head first.  We really work on it, trying to make it fun.  However, it’s hard to make it fun when we are dealing with it all the time.  If I’m particularly tired or cranky myself, things just get worse.  I yell more, threaten, put her in timeout, etc.  It’s not good for either of us.  Necessary at times, not all the time, but just not good.

2 nights ago, I finished reading to M before bedtime, and she smiled and asked me, “Do you still love me, Mommy?”  I was taken aback.  I said, “What?”  She said, “Do you love me anyway, even if I’m not a good listener?”  It broke my heart to hear that.  She said it with a smile, and didn’t look defeated or with a loss of self-confidence.  It was more out of curiosity.  The fact that she asked me that, in those words, made me realize that all of my words, actions, intonations, EVERYTHING…M takes it all in and processes it in her little 3 year old mind.  Whether she actually meant the questions she was asking me or not, it pulled all the strings.

I reassured her that Mommy and Daddy ALWAYS love her, no matter what.  Did we want her to be a better listener?  Yes.  Would we always love her even when we weren’t always happy?  Yes.  Come on, I couldn’t just say yes, we love you, you don’t have to learn to listen better, etc etc?  I wanted to be fair in the sense that we all have things we are simply just working on.  We try to help her BECAUSE we love her.  We will always love her, even when she makes it damn hard!  Of course, I didn’t give her THAT piece.  Kids, they are smarter and sharper than we ever give them credit for.  Back to long, breathing exercises!

A whirlwind long weekend

This post will have to get broken up into parts.  So consider this part one.

We went on a LONG weekend to see my brother and his family in Virginia Beach.  It’s about a 7 hour ride from our house.  We were supposed to leave early Friday morning.  But with the warnings of Hurricane Bill, we left unexpectedly on Thursday night so we could still enjoy Friday at the beach.  We thought we could drive through the night and arrive around 2am.  We couldn’t make it.  We gave up at 11pm and found a hotel in Eastern Maryland, near the Virginia border.

Have you noticed that vacationing with young children is really not a vacation for you?  It’s so much work!  And you’d think they’d be exhausted at 11pm.  We walked into the hotel/motel lobby, and you would have thought they walked right into Magic Kingdom.  They were laying on the couches in the lobby, yelling because they thought the echo effect was cool, and running to and from the sliding glass doors.  We were so mortified, but we couldn’t calm them down!!  I’m sure the receptionist was disappointed that she gave the 3rd to last room to us.

As soon as S realized that we were going right to sleep, she got whiny and teary.  For about a 1/2 hr, in the dark, I could hear her telling my husband, “Daddy, I’m ready to go. I don’t need sleep.”  And each time she did, M would sit up, blow S a kiss, and said, “Feel better. I’ll go, too.”  As if they could just leave the 2 of them and hit the road.  Trust me, I loved the idea when I was dead tired and just wanted to go to sleep.  But there was no way that was happening.  I fell asleep before anyone else.  When I woke up briefly at 12:45am, the room was quiet.  Everyone had fallen asleep.

At 6:45am, I felt breathing on my face.  M was staring at me, not saying a word, but breathing on me.  Kind of creepy yet sweet.  By 7:30ish, we were back on the road, with S in tears saying she wanted to stay at the hotel (I’ve decided, I just can’t win with her on trips.  I do my best to ignore it all, but it really grates on me when I’m tired, too).

We got to VA Beach by 10am.  We literally dropped our thing in the house, got into our bathing suits, and went straight to the beach.  It was awesome!  A beautiful day, with a slight breeze, the waves were a little rougher than I would have liked.  Bill was coming in, and I knew the waves were going to be CRAZY!  It was so different than any of our other beach trips the last couple of years.  So many surfers were way out.  We could see dolphins out by them.  I hear in the evenings, the sharks come out there, too!  S and M couldn’t get enough of watching their older cousins boogie boarding.  Together in the sand, they were digging huge sandpits, with bridges and tunnels connecting them.  S pretty much stayed in the water the whole time.  M started out that way, but got washed to shore by a couple of big waves.  One of them knocked her right into the knee of a man who was trying to catch her and get out of her way.  That sort of did her in for the rest of the day.

I get this feeling every time I see my girls with their cousins, from either of my brothers’ families.  The cousins are older, both sets 10 and 8.  Yet, they are so sweet to my girls.  This family we saw have 2 boys.  They totally take care of them.  They couldn’t be more boy boys, and my girls, girly girls in comparison.  But my kids have so much love and adoration for their boy cousins, and they have so much love and tenderness to my kids.  It’s extremely sweet.  We see each pair once a year if we are lucky.  It’s just so hard to get down to VA or to IL.   Each time we get ready to leave, I wish they had more opportunities to build that relationship.  I never really got to see my cousins since most of them lived in another country.  As a child, I felt that I really missed out.  I had hoped that wouldn’t happen to my kids, too.

From the beach, we went back to their house, and straight into their pool.  Watching them swim around so well, S found the confidence again to ditch her little bubble and swim around the pool without any flotation device.  She was jumping off the diving board with them, having the time of her life.  M wanted to get rid of hers, too.  Not an option, but she gave it a whirl.  She was okay where she could touch until she went into the deep end.  My husband jumped to get her.  She came up with her arms around him, grinning ear to ear, saying, “You saved me, Daddy.”  We all had to roll our eyes.  Will she ever learn her lesson?

We all went bowling together, too.  S, for the first time, really got into it.  She figured out when it was her turn, and did her little umph push to her ball.  It took what seemed like an eternity for the ball to knock down the pins, but she was having so much fun with her cousins.  M broke out into a dance when she knocked down her pins, yelling, “I won I won”.  I last took them bowling about 4 months ago, and after the first 4 frames, they both just wanted to go home.  This was the first time we found shoes in M’s size.  She was ecstatic!!  It takes so little sometimes to make them happy.

They didn’t want to leave.  S cried on and off for about an hour on the drive back north, saying she wanted to stay with her cousins.  Sweet and sad.  More next time…And there is most definitely more!

have to laugh

So we are getting ready to eat dinner the other day, and I ask both S and M to sit down at the table.  S was watching a tv show and was walking backwards to the table.  M had hoisted herself up already, and was about to dig in.  I noticed that S had a hand on her buttock, under the underwear.  I immediately told her to go wash her hands since that had germs.  She complied without a reply.

M looks up from her dinner.

M:  Why does S have to wash her hands?

me:  Because her hand was on her tush, and that has  lot of germs.  We have to make sure our hands are clean when we eat.

M:  But sometimes I have to touch my tush.  You have to touch your tush when you get wedgies.  I think S was just taking care of her wedgie.

me:  hmmm….really?  Then we should still wash our hands afterwards.

M:  But mommy, we have to get the wedgies out, right?  If we don’t, that wouldn’t feel very comfortable, right?  And we don’t want that!  We don’t really touch anything dirty when we get wedgies out.

I couldn’t respond.  I was going to laugh too hard.  You know, at 5, with her delays, S wouldn’t be able to have that full conversation, well thought, and well expressed to me.  Yet, my 3 1/2 year old has that ability.  On one hand, it seems unfair.  On the other hand, I just can’t help but smile and laugh.  It was DEFINITELy not the direction I was headed in when I asked S to wash her hands.

“welcome to Holland”

I saw this at a therapist office and thought it really spoke to a family with special needs.  I’ve seen it posted around, too. I wanted to share it here.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

social skills

So the next step in this crazy world of child therapies for us is social skills group.  A social worker leads a group of 2-3 kids and teach them….social skills.  Maintaining eye contact, taking turns, initiating conversation, maintaining conversation, ending a conversation properly, staying on topic are just a few to name.  S’s Semantic Pragmatic Language Disorder makes some of these things extremely difficult for her, affecting her playtime with friends.  Her teacher, neurologist, speech therapist, and even her occupational therapist all agreed that social skills was next on the list.  So I went and did my research, asked around, called around, and narrowed down my choices.

One social worker nearby is a Jed Baker trained therapist.  Jed Baker is one of the leading voices on social skills.  He has written a few books, and gives lectures on the necessity of social skills to children and his techniques.  He targets 70 different skills, and each week one is the focus.  So we went to see this woman, wondering how it was all going to turn out, especially in light of S’s anxieties from her evals and testing.  We skipped soccer thinking it would have been too much for S, and the timing was going to be tight.

S was cautious with everything but did okay for the first few minutes.  She loved that there were 5 or 6 huge pillows to lay on, a chest of games, and a locked treasure chest.  She really wanted to open it.  But she wasn’t allowed to until S and the SW had “talk time”.  It was interesting observing them because for once, we could really be passive.  We could see each sign she gave in distress.  S would tighten just a little more, become more restless, made less eye contact, and eventually just blew her lid.  She refused to answer questions, didn’t want to participate in any games, and wanted to leave.  She came off extremely anxious and defiant.  Then she started yelling and throwing a temper tantrum.  Oh boy.

Part of the problem was the SW just talked too much.  I mean that in a nice way.  Not nonsenical talk.  But talked way above S.  I’m positive she lost S in the first minute.  She was rattling off questions, kept reminding S to look at her, and trying to get any comments or ongoing conversation with S.  She is a nice lady, but not very warm.  There didn’t seem to be any drawing S in.  She clearly didn’t understand any of S’s issues, and wasn’t making her feel any comfortable.  If you can get S to feel comfortable, you can get her locked in.  But rapid fire questions is a lot like her other evals.  She is going to freeze.  S knows her communication problems, and gets anxious from her lack of confidence in that area and not knowing how to respond.

Anyway, the SW and I got a chance to speak alone, too.  She couldn’t get over how anxious S was.  She asked about medication and wondered why she wasn’t on anything.  She also believed that with the anxities and weak language skills, S couldn’t join any groups.  She would need to have 1-1 play therapy with the SW for awhile.  No way she would manage an hour either.  I asked if it was even worth having social skills work right now.  The SW said it would take a few sessions to really find out where S was on the whole scale.  Then she could let me know if it was worth it or not.

So now I’m left at a crossroads.  I’m not sure what’s the best thing to do.  I really believe that social skills is the next step.  She’s going to eventually lose her peers’ interest if she can’t learn some of these skills.  Yet if she doesnt’ have the language development yet, she’ll lose them anyway.  And that breaks my heart.  At each crossroads I’ve faced, even if it was going to be a difficult transition, I firmly believed in my decision.  I thought it was what was best for S.  Now, I just don’t know.  It’s not a huge, life altering decision.  But I feel like time is ticking away.  As much as things keep progressing, and S continues to make great strides, I can’t help but feel something is slipping away.  Maybe it’s letting go of these great friends we’ve both made this year, as PreK ends, and everyone goes on to their respective home schools.  Or projecting forward,  will she lonely and have trouble making friends with language or other difficulties?   I know I can’t keep the shield around my “baby” girl forever.  But this bubble I’ve been maintaining to keep her emotional safety is popping.  She’s more aware of her differences.  Other children have or will be picking up on it, too.  I am desperately looking for something positive to cling to, to lead me through these decisions, to ease my own anxieties, to make me a stronger advocate for my child.  I’m hoping people will read this and send some positivity my way.   Where do we go? and What do I need to do?

Navigating the system-part 2

So my review meeting…..

We started to discuss S’s IEP for next year.  The IEP is an official document that is needed when a child is in Special Education.  It outlines specific goals that are targeted for your child.  Speech related goals could be about articulation or understanding WH questions.  Academic goals could be on being more attentive in circle time.  But they are specific to your child only.  All the reports are written in it, all recommendations, helpful tips to the teacher, everything that your child should be receiving in school as part of their services.  

By the way, if anyone has a child that falls under any kind of Special Education, make sure you read up on your rights according to your state’s code.  It is unbelievable to me how many stories I hear of where the school is in DIRECT violation of that code.  They know it, and might be getting away with it because you don’t know it.  This is your child, and you are their biggest advocate.  Know your rights.  Period.

I was hoping S would have a 1-1 aide next year in K.  19-22 kids in her class, 1 teacher.  I just don’t see how she could make it in that kind of a situation.  Given the results of the reports, I wasn’t sure how they were going to deny her of that.  On the flip side, like every other school disctrict, ours is having some big budget cuts for next year.  Where are they cutting?  In special ed and 1-1 aides.  We argued it, and Ms. H wasn’t giving.  Mrs. M did step in and ask the questions we were really trying to get ask, and we heard Ms. H’s pursasion.  Mrs. M kept stepping in, letting us know why she thought S was going to be successful, what had to happen for next year’s teachers to help her, kept Ms. H on topic and relevant to us.  You could see, she really was S’s champion.  I felt abandoned by her recently when I heard of S’s distress from all the pull out testing.  But here she was, back in our corner.  The appreciation and love she has for my daughter shined through.  It was almost tangible.  Still brings tears to my eyes thinking that S will be moving on from this woman, from this amazing class of peers.  She made us feel we really have a shot next year, just when I was getting scared and overwhelmed.

We didn’t get the 1-1 aide, though.  S is getting a group aide, someone who will help 3 or 4 classified Kindergarteners that are clustered together.  It’s better than nothing.  I pushed as hard as I could without being over the top.  I still have to work with these people in the future.  I can’t burn my hand before I even get there.  

A few bumps, but we got most of the things that we had wanted.  I didn’t know what to expect from this meeting.  I didn’t know if they were going to tell me that S wasn’t ready for Kindergarten or not.  If she wasn’t ready, there is no place to put her next year.  She would have to move forward.  They are sending her forward, but said she is also Kindergarten ready in most aspects.    They gave us suggestions for the summer and next year.  I came out somewhat hopeful.  Drained, but hopeful.

We have an IEP meeting next.  We all go over the goals listed and what needs to be put in there.  I have my notes that I want in there going forward.  I’m not asking for too many more things.  Small things that were in my IEP this year.  I don’t necessarily see it being a problem for the next.  But I’m suddenly facing this long tunnel.  Well, not suddenly.  I’ve been looking into it for awhile.  But moving from a preschool program, and looking into the elementary school adminstration, the game is going to change.  The players will be different, too.  I’m not sure how to go about this.  I have a lot of support in friends who are going through it and who have been through it.  That helps.  But I’m still looking in the dark.  How long will we be going down this path?  I take it day by day, week by week, but years????  She’s to be classified for at least the next 3 years.  She can be re-evaluated, those are generally done every 3 years.  But what’s going to happen in those 3 years?  And equally importantly, what’s going to happen after those 3 years?  We’ve been handling S’s issues for the past couple of years, and now how many more years is this journey going to take us on?  How long will we be battling and working with the school sytem to get her the services she needs to succeed academically.  That’s not even touching on how she will succeed socially.  And you all know that once kids are hitting 3rd, 4th grade and above…it’s ALL about the social aspect.  The “game” keeps changing, the goals keep shifting.  I’m left wondering how long will we really be at this?  Elementary, middle, to high school?  and beyond?  I know we can’t really ask that, and I’ll drown in my own worries if I look at it that way.  But what if where we are right now, just entering elementary school, it’s the easiest of the steps that just get steeper as we get older with the higher expectations and demands?  Where does that leave all of us?