whirlwind weekend, part 2

I wrote this a few weeks ago. And forgot to post it! It’s a continuation from a recent post of a whirlwind long weekend.  Here it is! sorry so late!!

So, we left my brother’s place, heading towards D.C.  My aunt has a restaurant outside of the city, so we decided to meet her for lunch.  The traffic leaving VA Beach was terrible.  It was Sunday, lots of traffic heading northbound.  But there was an accident near Williamburg, that backed the traffic back for an hour.  Nothing like crawling through traffic with our anxiety-ridden 5 year old crying in the backseat over leaving her cousins behind.  It would have been tough to take if we were flying down the highway.  Snailing our way through made it so much worse.

My husband had a good friend that lived near my aunt’s restaurant.  So he thought, “Let’s invite them out, too, so we can catch up.”   As we went with the ebb and flow of cars, we were both tired and grumpy.  We were trying to be careful not to snap too much at each other, but honestly, for me, it was really hard.  I was taking everything the wrong way, and so was he.  It’s times like these where I wish we took 2 cars.  That way I can screw him with 2 screaming kids, and I can ride in peace with the radio really loud, drowning out my thoughts.  Oh well….we can always dream….

We got to the restaurant late.  Both kids were exhausted.  S was so wary of new places, meeting new people.  She didn’t want to get out of the car, and then she didn’t want to go in.  It was small resistance, one that we could push through.  Our friends were there.  They had a girl a few months younger than S, and a boy that was almost 2.  Being tired and restless, I pulled out some magnet games for the kids.  It didn’t matter that both girls were playing with their own game.  When I offered one of our other ones to our friend’s daughter, oh my goodness.  S flipped out so badly!  She was totally playing with something else.  That’s one thing I don’t understand about kids, especially my own.  When there is something so unrelated to what they are doing, or something they are not even playing with, and another child comes to play with it, wow!  They spring like a mountain lion, and are all over it.  And even if they claim it again, they just sit on it so no one else can play and they go on with their own thing.  Major pet peeve of mine.  So of course, I am hard on my own daughter.  My friend makes her daughter give it back to us, which is completely ridiculous.

Meanwhile, my aunt is trying to have a conversation with all of us.  My husband is busy trying to catch up with his buddy.  I’m trying to get the kids to eat and keep their tempers somewhat cool.  It was the craziest lunch.  I felt like I was everywhere but right where I was supposed to be.  I felt terrible towards everyone else.  I couldn’t keep a conversation going, I couldn’t really eat my lunch, and if I didn’t get out of there quickly, I was going to smack my kids in front of all the customers!  I was soooooo  teetering.  You’ve all been there, I know.  Out in public, and both kids are kicking up a storm.

I was so relieved when we finally caved and had to leave.  Both kids were asleep within 10 min of leaving.  We drove the 30 min to MD, where we were going to another friend’s new house, with another family coming down.  My kids slept for an hour and a half in their car seats, on the driveway, with the engine turned off.  NEVER happens.  Both kids usually wake as soon as you start slowing down or come to a stop.  They must have been totally done in.

When they came to, they pretty easily joined the other 3 preschoolers and 2 babies.  The men sat for hours seeing if they could finish a bushel of crab.  Crazy guys.  But it was so good to see close friends where we weren’t so on top of our kids.  We could sit and relax to a degree and chat.  We could go watch our kids, and still chat.  And of course, S was all over her MD buddy B.  She was so happy he was there, and the 2 played where they left off at the end of the spring.  M was bonding and fighting with the 3 year old daughter of our hosts’.  Comes with the territory.

We took the drive north to a hotel outside of Baltimore.  After her 1 1/2 hr nap, at 11pm, S looked no where near tired.  I let my husband manage that one.  In the morning, we were off to B’s house.  Of course, S cried that she didn’t want to leave the hotel.

At B’s house, they all played.  THey played with toys, colored, made projects, rode bikes, operated battery cars, etc.  They had a ball.  They sat and ate lunch together.

When it was time to go, S didn’t say a word about where she wanted to go.  In fact, it was M, this time, that THANKED us for taking her home.  She couldn’t wait.

Overall, we had a great 5 days.  crazy, emotional, fun.  I’m hoping both my kids experienced enough to give them some emotional and developmental growth.  I believe that you have to travel outside of your own home and comfort zone to gain experiences for life growth.  As children and as adults, it’s important to see what’s out there beyond your daily routine.  For someone like S, who gets so anxious with the unknown, the unpredicatable, it’s so important that she realizes that we can be pleasantly surprised by newness.  She may not always think so at that particular moment when her emotions drown out every bit of rationality.  But once she gets to the other side, I hope we continue to let her see that life is full of unexpected turns and experiences.  Even the planned ones.  But that doesn’t have to spell disaster for any of us.  That we gain richness in our lives from those experiences, especially when they involved family and friends that enrich us, too.

5 stages of grief

They say there are 5 stages of grief, and that you need to process through all of them to eventually heal.  I think I heard that before I had children.  And then I heard it after S had some speech delays.  I heard it recently on a tv show, and it struck me again.  A few months ago, I posted something beautiful I read that was so true as a parent of a child with special needs.  Welcome to Holland completely pinpointed all of my thoughts and emotions about it.  But the 5 stages of grief…well, that’s a lot deeper.

The 5 stages are Denial, Anger, Bargaining, Depression, and Acceptance.  Obviously, this was thought out for bereavement.  But I actually think this can easily be applied to special needs parents.

For myself, I don’t know if there was actually a point of denial.  Well, maybe that statement right there is proof. LOL.  I really tried to look at our situation as it was.  I truly just believed S had speech delays.  When her OT eval came back, I was surprised by how many areas she was having trouble in.  When people started dropping autism in my lap, I really went and did my research.  I sincerely thought that S was not.  But then I started watching her socially and wondered if it were possible.  When the neurologist said she was not autistic, I was in denial about that!  I fought him that she had to be!  Each step of that process I realize I was not dealing with just a speech disorder.  From then on out, I knew S had a growing list of needs and areas of concern.  She was not going to be a “typical” child for these first few years, especially in school.

I definitely felt angry.  I was angry at everyone.  Angry for S.  Why did God choose her to have these difficulties?  Our sweet little girl who wants nothing but people to love her (and a side of gummy bears wouldn’t hurt).  I would never wish anybody else, child or family, to be deprived of their “typical child” family, but I was constantly asking why.  Still brings tears to my eyes thinking of this question.  Why S?  Why this family?  Why me?  I’m not the best person to handle this as a mom.  But in the end, I could ask all those questions, and it didn’t change what I knew.  It didn’t really matter why.  It’s what it is, and I’m her only mother in this lifetime.  We have to make this work and do best by her.

Bargaining….I’m not sure I tried to bargain with God or anything like that.  I kicked myself into high gear, though.  I did all the research, and continue to.  I talk to a number of people, always trying to figure out what is our next step.  I read online (btw…terrible idea when researching sometimes.  what is out there online is truly depressing and alarming!!!  but of course, my terribly addictive personality quirk, I can’t stop), read books.  You name it, we are doing it!  But it’s like a bad disease for me.  I am obsessive.  Instead of bargaining, I’d call it Fixing.  Not that S is broken and needs to be fixed.  But it’s that kind of mentality.  I don’t know if that will ever go away.  I guess it’s 2 things.  It is in S’s best interest if I can start paving the path that will help her the best.  and wow. I can’t believe I’m going to admit this here because I’m not sure I’ve even admitted it to myself.  It keeps me moving forward because as her mother, I feel helpless.  There. I said it.  It’s the only proactive way for me to be productive by my daughter.

Depression.  This is a dark and twisted path for anyone.  And I’ve definitely been hit by depression, in bouts.  It comes and goes.  Last spring, when S withdrew from all her friends, and was constantly agitated was difficult.  I was coming into the idea of okay, she has a lot more issues than I thought she did.  And came to my own conclusion that she must be on the autistic spectrum.  Not severe, but on it.  It lasted on and off into the fall.  Emotionally for me, that was probably the worst summer I remember experiencing.  EVER.  I felt as emotional and drained as I did in my postpartum days.  Without the sleep deprivation.  (okay, so that’s a huge difference.  but I felt like crap and easily cried a few times a day and almost every night.)  I was so dark within my wallowing, I just didn’t feel like there was anyone to talk to about it.  I couldn’t say it out loud to anyone except my husband.

Acceptance.  I’ve accepted that this is the journey we are taking.  It may not be what we envisioned and dreamed about, but it’s our reality.  I have come to love my whole daughter, not just the parts I wanted to.  (Isn’t that horrible to say??? ALL of your child?  not just the good and “bad” where we think of stubborness, tantrums, etc.  But delays with the accelerations, too).  Because of some of S’s delays, her brain has compensated in other areas.  She has an incredible sight memory.  Very visual.  She may not express herself as well as other 5 year olds, but her visual memory is almost photographic.  She may resist and be stubborn, yet when she loves something, S really sticks with it.  There may be more scripted speech than spontaneous speech, but nothing beats her “I love you, Mommy” followed by her arms around your neck.  Then she leans back for a peck.

So I guess those are my 5 stages.  Does that mean I’m healed?  I don’t think so.  Because all those things come back at different times.  I still definitely have moments of Denial, DEFINITELY moments of anger.  I think one of the reasons the depression hasn’t set in is because 1.  I have a lot more people to talk about it with.  2. I’m more open about our experience.  3.  I just don’t go there.  I don’t spend the time to really think and get down about it all.  4.  I surround myself with great friends who I’ve let stand by me now.   I’ll always be bargaining or fixing of some sort.  It’s not like me to just let it go and do nothing.  S is my eldest daughter.  I want to give her the best chance possible going forward to living a normal childhood.  I still read welcome to Holland to remind myself that it’s just different.  Not worse, just different.  And I will continue to have those moments where I wonder, “How the hell did I get here?”  and the other moments of “Why would I want to be anywhere else?”

“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.

Early Intervention- the education

(This is part 3 to the Early Intervention post. It was so long, I had to split it up.  Scroll down for the first 2.)

From the teacher to the parent.  The tables are turned now.   And I’m much more careful when it comes to other people’s children.  But what I choose to do for my own kids, well, that’s up to me and my husband.  And I don’t let too many people tell me otherwise.  There are people who think I do too much, others that probably wonder why I don’t do more.  But at the end of the day, I’m doing what I think is in the best interest of not just my child, but my family.  

Secondly, I learned a HUGE lesson through this first EI process.  Just because in my own mind I have a timeline on how I think or want thinks to progress,  it is absolutely not the case.  I thought I could wait and make a couple of calls, and in a few weeks, S would be in speech therapy.  There are so many steps, schedules, evaluations, reports, recommendations, and then time to find the therapist and set a start date.  Things take time to get put together.  Even if I’m looking a few months down the road to start, I don’t usually wait to get the conversations started or do the research.  I’m almost paranoid of losing that time due to bureaucracy or hold ups on the other end.

I’m not an expert by any means.  In the classroom or as a parent.  I just have my experiences.  I find for myself, I ask questions to people, I read and look on the internet.  I gather as much varied information as I can, and make a decision with my husband that not only are in the best interest of our child, but one that we are okay with.  I have met so many parents along my journey who have been very positive about their path and others who are very negative.   I try to listen with an open ear and a non judgemental mind.  I have to be very careful with my suggestions.  People don’t always want advice.  Sometimes they just want to talk to someone.  If they ask, I let them know my own choices that I made for S, making it clear, that it was my decision.  It doesn’t have to be theirs.  If they ask for advice or resources, I can give only what I draw from myself.  They are free to take it or leave it.  I can not be pushy or even follow up often.  Intervention is not going to be for everyone.  Each parent makes their own journey, and whatever choices they choose to make for their child, it’s their decision to make.  PERIOD.

Postpartum #2

As I said before, the 2nd time around has always been a completely different experience.  M’s birth was the ideal birth.  Quick, painless, and absolutely no surprises.  I almost missed my window of opportunity to receive an epidural with S.  Too many people needed the anaesthesiologist, and I was nipping at the bud waiting.  This time, he was right there to offer me one.  I didn’t feel like I needed it at the moment, but heck…it was 1:30am.  He wasn’t waiting around for me to be ready or not.  So I said okay.  My husband wasn’t allowed to be there for it like the first time.  Liability, they said (I hear a lot of men pass out at the sight of it and with birth…what did they go through to earn the go unconscious pass?).  

My mom and husband brought S to see me and her new baby sister in the morning.  Melted my heart to see her come in with such a big smile for me.  She held her little sister in her arms, and gave her a kiss.  We wanted to give S ownership, and always called her S’s sister, M.  S had mild interest in M, and M was just about sleeping and eating.  She nursed well from the beginning, and rarely let out a cry.  Biggest difference, too, was that I was ready for visitors!  I didn’t have tons, but I had a few great ones.  

I was eager to come home this time.  This time, as much as time concentrated on when M needed to nurse, I still had to take care of S.  She was okay with my mom and my husband, but when I nursed M, she was stuck to me.  And to be completely honest, my focus was more on S than on M.  There were other hands around to help, and I had this already established relationship with S.  I worried about her adjusting to a new baby, so I put my energy there.  Whenever anyone was around to help, M would get pushed off on them, and I would take care of S.  M was a so so nurser and actually seemed more satisfied with formula.  I wasn’t producing nearly the amount of milk as I had been with S, and I couldn’t keep up with her demand.  After a month, she was 100% bottle fed.  Anyone could feed her and tend to her.  

M got fussy around 6-8 weeks.  It would start around 6:30pm.  She would cry, sometimes unconsolably, but for 20-40 min spurts.  And then again around 9pm.  It could take anywhere between 20 min-1 hr to calm her down to sleep, but she did! and she would go 3-4 hr spurts.  It’s not like she never cried or fussed.  Some nights she would fuss from 2am-4am.  But we aren’t talking 6 hrs of pacing and absolutely unconsolable.  She took to a pacifier, too, something S never did.  It took a lot of the edge off.  I could be walking around, helping S, having a conversation with a friend, and look down to find M completley asleep in my arms.  I wasn’t even trying to get her to sleep.

My friend told me that my baby wouldn’t remember being left crying for a few minutes while I tended to my toddler.  But my toddler would remember having been put off for me to tend the baby.  If I was giving S a bath, and M was fussy in her take along swing or bouncy seat, I was told it was okay to let her cry for a few minutes while I finished with S.  S was held within 5 seconds of crying out (with the exception of when we sleep trained her).  M was left for minutes at a time…next to me, and in sight, but had to wait.

Finally, M was born at the end of March.  The weather was warmer and nicer, and we were out much more.  S dictated our schedule much more so, and still does.  But because we weren’t holed up so much, I felt more social.  It was a happier experience all the way around.  And because of the challeneges with S as an infant, our mantra really was “This too shall pass.”  We knew there was a light at the end of the tunnel of these infant phases.  We were a lot more relaxed about M.  She was a more relaxed baby.  And we knew by then that not every theory, book, routine, etc. was going to fit our child.  It was a huge expectation taken off our shoulders.  And the difference for my husband and myself as parents and as a married couple was tested so differently this time.

Sensory processing as an infant???

Last year, at the request of S’s speech therapist, we took S to get an Occupational Therapy Evaluation (OT).  I had been thinking for a few months that maybe we should get one.  S’s body was on the floppier side, she seemed to have weaker arm and hand strength.  I wondered if she had low muscle tone.  My husband thought I was crazy.  Since no one had ever said anything to us about it, he wondered why I was looking for it.  But I couldn’t shake it.  So when her sp.thpst. suggested it, I felt confirmed that my instincts were in the right direction.  Of course, the sp.thpst. noted different things:  trouble modulating the volume of the voice, and when one hand was coloring, the other hand shook side to side with it.  The results of the report was that S did have sensory processing disorder.  Like her speech, everything was scattered everywhere at different levels, making it harder for anyone to close in on what exactly was “off”.  A month later, we found a facility and an OT to work with S.

S was just 4 when this evaluation took place.  Just recently, I’ve been thinking back to when S was a newborn.  After an initial rough start with breastfeeding, we got into a good pattern after the first week.  She seemed what we heard was typical:  night/day reversal, slept in short spurts, preferred to be held, not much feedback and lots of twitchlike movements.  At 3 weeks, S got a little fussier.  At 4 weeks, it went full throttle colick.  S would be manageable throughout most of the day, sleeping, nursing, sleeping, nursing, etc.  From 6-8pm, S would start to whine and fuss.  8-10:30pm, S would start to get increasingly worked up.  She would nurse well and dose off for a short 10-20 minute spurt, and awake crying again.  10:30pm-5am, S’s cries escalted to full blown, and we couldn’t calm her down.  My husband and I took turns holding her, rocking her, standing next to the running dishwasher, the washing machine, the dryer.  We used all white noise to calm her down.  Sometimes it would work for about 30 minutes.  I’d find my husband sitting in a chair in front of the dryer, asleep, with S in his arms.  We took turns every 1 1/2 hrs because we were exhausted.  And let’s just be honest.  There is only so much crying and walking around one can take before you really start to lose it yourself.  We had to take turns crying and being strong.  We were a mess.  Around 5am, S would pass out from exhaustion, and we could get to about 7am in peace.  It went this way for 3 weeks.

One friend who had her first child 3 months before me suggested I read The Happiest Baby on the Block by Harvey Karp.  He gave the “s” solutions.  Swaddle, side/stomach, shushing, swinging, sucking.  It worked wonders for S.  She fought the swaddle, but it definitely helped her.  The tighter we wrapped her, the better the end result.  S definitely responded to being on her side, stomach to stomach with us.  The louder she got, the louder we shushed.  Sometimes we would turn on the vacuum cleaner.  It stunned her to silence and actually calmed her, quieted her down.  (later she would be scared to death of the sound of it).  A gentle swinging back and forth motion didn’t cut it.  We had to rock her quickly, hard, and pace quickly around the room.  If we weren’t so delirious and desperate, I’m sure one of us would have video recorded the process.  We must have looked crazy!  Sometimes it would take 15 minutes, some times an hour or more…BUT she fell asleep.  We found the only way we could keep her asleep longer than 20 minutes was to let her sleep on our chest after she fell asleep.  That’s how we slept for 5 months.  You know when people say you just do whatever you have to do?  That’s EXACTLY what we did.  She could go 3 hours like that!

The way that S responded to the constant, hard rocking, the loud shushing, the tight swaddle, it’s amazing to consider that not only was her system immature (as is most newborns), but could sensory processing come into play as a newborn?  Or did those aspects of her nervous system never mature the way it should have?  It’s not to say that a colicky baby will have SPD later.  Of course not.  I’m just personally looking at this one case of my daughter.   She has always loved to swing on the swings at the playground.  The higher the better.  Now she can pump her legs herself, and she flies.  She can go on for hours if we let her.  Her OT says it’s very calming to S’s system.  The OT evaluator suggested that tight clothes under her normal wear could help ground her.  During OT sessions, weighted blankets help her balance on chairs, scooters, her belly.  She loses the restlessness and wiggliness with it.  She gets distracted by noise, but silence is unsettling for her.  S likes white noise or sounds around her.  She can be playing with her talking Ariel doll and place it on the floor while she draws at the table.  As soon as Ariel stops talking and stops suggesting, S runs up and presses on the hand or stomach to make her talk again.  If S is drawing or doing puzzles, she asks to have music playing.  Just background noise comforts her.  

It’s interesting to wonder about those connections from the past to our present.  I thought back then that with some of my training, I would have been able to spot “off” issues with my child early on.  While some may say that it was early (before 3 and on), I can’t help but wonder why I only see these things now, in retrspect.