Another First!!

Carson lost his first tooth!!

Such a big deal for little ones-losing a tooth and then trying to go to sleep all excited with it tucked underneath your pillow waiting for the tooth fairy to bring you money.  Unfortunately for us, Carson really had no clue that he'd even lost it let alone want a tooth fairy visit.

I noticed a couple months ago that his bottom front teeth were loose.  Worried since he is only 4 I called the dentist.  They said it was the right tooth to be losing first so I shouldn't have anything to worry about if there wasn't trauma to the area.

He went to the dentist for his cleaning about a month ago and they took x-rays and found that his adult teeth are right underneath his baby teeth in the front and were just pushing them out.  Each day it would become more and more wiggly.  I was afraid that I was going to have to hold him down and pull it myself or worse he'd eat it. 

Luckily for us neither were an issue.  I was at work and Carson was at my mom's house.  On my lunch break I called her to see how he was doing and while I was talking to my mom she noticed that he had blood coming from his mouth.  She thought that he had bit his tongue but then I reminded her about his tooth being loose and she hung up to see what had happened.

A couple of minutes later she called me back to tell me that it was his tooth.  He had popped it out on his own and it was lying on the floor!!  He's so cute with his little missing tooth.  I'm not sure he even knows it's gone except for when he tried to eat something with ketchup and I think it burned a little.  The tooth fairy brought him a word matching game.  When his sister lost her first tooth she was given a kit to make her own fairy doll.  So I think it was a good choice ;)

Another New Start

I thought that I had things finally figured out and as everything else that seems to go on in my life- I don't. 

At the end of Carson's school year last year I found out that his speech therapist Amy was going down to part time.  As a mother of 4 young children she needed to find a balance between work and home.  I could understand that.  I have been feeling the same way for quite some time. 

She assured me that I had nothing to worry about.  She was going to be there Monday Wednesday and Friday and since his schedule is Mondays there wasn't going to be a problem.  Unfortunately the best laid plans don't always work out... I got a call today from Amber the preschool teacher telling me that Amy will not be his speech therapist after all.

To be honest, I don't know whether to laugh or cry.  It's just our luck.  We finally find someone who is the perfect fit and now she is leaving us.  I have been assured that the woman taking her place is basically Amy in a different body.  Of course I'm not the one who needs convincing on that.  It's up to Carson. 

I have been told that every other aspect of his day will remain the same- his physical therapist, his occupational therapist and his preschool teacher (who we apparently also almost lost as well).  So I guess there is some good to come of this.

So for now I have this nagging pit in my stomach that things are about to get bad again and for Carson's sake I hope I'm wrong.  Two more weeks and we'll find out....

The First Days-Part 2

When Carson and I were moved to our new room it was so nice to finally have a chance to sit and process things.  Everyone was waiting for me to send pics so I would call them first and warn them that they were in for a shock.  I called my mom first.  She was watching Baylee for us, who was only 3 at the time, so I figured she was the first person to call.  When I said the words 'Down Syndrome' it was so silent on the other end of the line that I thought she hung up.  She really didn't have much to say to me other than not to worry because they weren't 100% sure.  I didn't think about what these other people may be feeling or thinking when I started calling them.  My boss was on vacation.  At dinner with friends.  Never occurred to me to wait.  I guess I was just thinking if I told enough people that maybe it wouldn't be happening or something.  I don't know.  I just didn't want them to be startled when they saw his newborn pictures. 

There aren't many pictures of those first few days of us.  It was hard to smile-to pretend to be happy.  I wanted those memories for when he was older and able to look at them and understand.  I was afraid that he would put two and two together that his sister had pictures almost down to the minutes of her life and he had none... or few anyway.

A few people came to see us that first day.  My parents came with Baylee (who was terrified of me being confined to a bed). My sisters and my best friend Sarah.  My step-mom and my dad.  When my sister Heather was holding him I confided to her that I didn't think that he could hear.  Something about the way his ears were shaped and the lack of response to noises concerned me greatly.  Mother's intuition I guess... 

The geneticist finally came into my room at 11pm.  Honestly.  I was so surprised to see him.  The hospitals were about 30 minutes apart from each other and I figured since Carson was born in the morning that he wouldn't come until the next day.  I was a little disappointed that Mike had gone home to be with Baylee but that's what happens when you have more than one kid, right?

He was so nice and understanding.  He asked honest questions without making me feel like it was my fault for Carson's anomalies.  He took written notes.  Pen and paper.  He asked if he could take pictures, to which of course I agreed.  He was in our room for at least an hour.  I still have a copy of his handwritten notes.  I look back at them now and again.  He unfortunately was just as puzzled as everyone else.  He mentioned all the things that made Carson unique-his wide-set eyes, the fat pad on the back of his neck, his palmer creases which were so significant in diagnosing Down Syndrome, his crooked pinkies and his misshapen ears, his high palate and his tiny penis.  Yes.  I said it.  Because of that one symptom they were afraid that it wasn't Down Syndrome but Edwards Syndrome- trisomy 18 not 21.  (If you aren't familiar with trisomy 18 I suggest you look up 99 balloons on YouTube.)  He decided that the best thing to do would be to do a blood test to check the chromosomes and then we would follow-up with him periodically.  I thanked him and he left.

That night was hard.  Being alone. Being tired both mentally and physically.  The nurses came to take him around 2 am to draw his blood.  I wanted so badly to go with him but they told me it would just be a little bit and he would be back in the room.  I dozed off for a while and when I woke up it was 5am.  5am and Carson wasn't in my room.  Panicked I called a nurse to my room.  She explained that they had trouble getting a vein so they sent him upstairs to the NICU so that the specialty nurses would be able to draw blood easier on him.  About 2 hours later they brought him back in.  He was covered in little round Band-Aids.  He looked like a pin cushion.  I don't remember now exactly how many punctures (upwards of ten) but let's just say I was pissed at how many times they tried before they decided they couldn't get a vein themselves.  This poor kid wasn't even 24 hours old yet and he'd experienced more pain than I wanted him to in a lifetime.

Later that morning I got up and started moving around.  A resident pediatrician came to check on Carson and assured me that he didn't see anything wrong.  While he was there my phone rang.  The caller id was one from a friend of my mother's.  I decided to let it go to voice mail.  Let me be clear here- I appreciate the thought BUT when I listened to the message it was a joke.  "Your mom told me.  I'm so sorry.  If you need to talk I'm here."  I almost laughed out loud.  This was a woman whom I hadn't spoken with in YEARS.  She didn't have a child with special needs and as far as I knew didn't know anyone with one either.  What on earth could she have to offer me?

Mike showed up at noon ready to take us home.  They came and took newborn pictures and then the woman came to administer the newborn hearing screening.  He failed.  Big surprise, right?  She said sometimes babies had fluid in their ears and it distorted the results so I should make an appointment with an audiologist in 3 weeks to see if the fluid had gone.  Great.  Something else to add to the list of people to call when I got home.  It was beginning to become overwhelming to me.  They decided that they should call social services to come see us before we left and I was reluctant but apparently that isn't a decision you can make.  If they feel they need to come-they're called.  Lucky for me though I was discharged before they even made it to my room.

So we were off with our new little bundle with more questions than answers.  More questions than we will probably ever have answers for.

Preschool

School is starting soon.  I honestly can't wait!

When we had our first follow-up visit with the geneticist at 2 months of age it was noted that he still had very low muscle tone.  He was unable to hold his head up for any length of time and was also unable to hold down his milk if laid down right after a feeding because the smooth muscles in his stomach/throat were just too weak.

Carson was entered into a program at 3 months of age that helps facilitate care coordination for him.  Here in Ohio it is called Help Me Grow.  From birth to 3 years of age they have specialists who come into your home and will evaluate the situation and make decisions about physical therapy, occupational therapy and speech therapy.  Every couple of weeks a speech therapist and physical/occupational therapist would come to our house and work with Carson while also teaching me how to do the exercises with him myself between visits from them. 

The team that worked with Carson was amazing.  Within a few months he was able to hold his head up on his own and by the time he was 9 months old he was crawling.  A HUGE feat for a child with hypotonia (low muscle tone) because the cross-body action is almost impossible.  He was walking at around a year- but when I say walking think of a very slow staggering drunk, leaning forward almost ready to face-plant at any moment.  They told me that he probably would never run and jumping wouldn't be possible for him.  I was just happy that he was upright.

At the age of 3 he was transitioned out of Help Me Grow and I was given the option to enroll him into a special education preschool program that has therapists employed by the county who come and work with the children in our local school district.  At first I was very skeptical.  I didn't want to leave him alone with people who I didn't know and couldn't trust with my little man.  With him being non-verbal what would happen if they treated him badly and I wasn't there?  How would I know?  At first I turned them down.  I bought the Baby Signing Time DVD's and began to work on teaching him American Sign Language. 

Of course he was entranced by the music and the movement on the TV but really wasn't interested in the actual content of the movies.  At the next visit with his coordinator she told me that I also had the option to use the itinerant services and he would only go to school one day a week for 2 hours and I could be there with him.  She told me just to take the meeting at the preschool and then I could decide.  Because it is ran through the county Carson would be getting PT/OT and speech therapy for the price of submitting the paperwork.  If a child is enrolled in the preschool and doesn't need services the parents pay $400 a month.  Seems unfair, but those are our tax dollars at work there.

So far I have really had only one person with the preschool that I have had an issue with.  Carson's first speech therapist for some reason decided on the very first time that he met Carson he would lock himself and his aide in a room with him alone.  He made me sit in the hallway and I listened to him scream for what seemed like a half an hour.  By the time they opened the door for him to see me his poor little face was covered in hives and he was frantic to be in my arms.  He had just turned 3 the day before and this was the first time he'd ever been in a room with strangers without me.

Needless to say it was a rough year.  Caron would do great in PT and OT but as soon as we would get to speech the panic would start.  He had to sit on my lap and I basically had to pin him down just to get him to do what the speech therapist wanted from him.  It first started with an 'easy button' which had a pre-recorded word like ball.  Then he would be shown a ball.  He would have to push the red button and have it say "ball" in order for him to get it.  After a while he figured it out and it would come easy to him...pardon the pun.

Not far into his first year in preschool I saw a news feature on a new program that was being used to help people with autism communicate.  It was Proloquo2go, an app for the iPad.  It really got me thinking about how it could probably help out in our lives too.  At school they were using a board with Velcro spots to place a sort of timeline and he would have to pull a picture to get what he wanted.  Velcro is Carson's Kryptonite.  One touch and he will vomit all over the place.  (think Pitch Perfect) That is part of his sensory integration but I will get to that in another post..

So I paid the $500 for the iPad and then the $190 for the program and wouldn't you know it? The kid has a brain in his head!  It started out slow but now he is able to do so much on his iPad than I ever imagined.  He is learning how to sort shapes and colors.  He is far beyond what anyone would've ever known had I not gotten it for him.

Carson's second year of preschool (last year) went much smoother.  He was given a new speech therapist who I would die without.  Her name is Amy and she seriously is a true miracle worker.  From day one she has always looked to Carson to excel.  She will give me an idea to go home and work on with him and by the next Friday he'd have it mastered.  She got to the point where she was afraid to give me something to work on because then she would have to rewrite his goal.  She is the yen to his yang.  He adores her.  I hope that he is as happy to see her as I will be. 

This is his last year for preschool.  I don't think even if I decided to red shirt him (wait until he is turning 7 to start school) they would let him continue there.  This is something that I will have to look into...  Until then I won't worry so much about it.

Jobless

Yesterday I found out that as of November 1st I will no longer have a job.  I have been working for a dermatologist in Cincinnati for 14 years.  I started working there when I was 19.  There have been many ups and downs there, many employees have come and gone but myself and one other girl who started just a few months before me are the last two standing.

My boss has decided to merge with a hospital and only work a very limited schedule.  I can't blame him.  He is almost 70 and has been working hard for most of his life.  His wife has been working in our office with us for about 10 years full time and she is going to be able to stay home and truly be 'retired' now.  I am happy for them.  I am also really, really sad.  He is going to a group of physicians
and they already have their own office staff so we won't be able to work with him anymore.  Even if we applied for jobs there and were hired we would only be working for the hospital, not for him.

They have a child who is a few years older than me who has special needs.  They have been my compass in a lot of my decisions when it comes to Carson's care.  They have already been where I am now and they have always been very forthcoming about details that weren't pretty in their lives with their daughter.  I don't know how to grasp the concept that I won't be able to go to work there and announce: "Guess what Carson did last night?!?" 

I am also excited about this big change coming into our lives.  This will clear the way for me to be able to explore my options with continuing my own education and possibly choosing a different career path.  I'm not sure if I want to continue doing what I am doing now.  I have also been very lightly looking into homeschooling Carson so this will be a great opportunity for me to really focus on what goes into homeschooling a child with special needs and try to figure out what is best for him.  I have always been very open about the fact that I am terrified of him going to school.  Not because I don't think that he would be able to handle it or succeed.  Knowing that he is non-verbal and probably always will be it is hard for me to send him to a place alone where I don't know what is going on during the day.  He would have no way of telling me if he was mistreated or bored or scared etc.  When he is upset or mad he will scream and pinch or scratch.  I don't want him to be punished for doing the only thing that he knows how to do to show someone that he is unhappy. 

Here's the other part to that worry.  Something that I haven't gotten into yet on here.  The boy is SMART.  I'm not just saying that.  He is smarter than his 8-year-old sister in many ways.  He has known his alphabet since before he was 2 and has been spelling since then.  He spells words that even I have to stop and think about to make sure I am spelling them right.  xylophone.  ambulance.  famished.  experiment.  Seriously.  The kid is amazing.  But he is also very splintered.  Here he knows probably every list of sight words from kindergarten to 5th grade but he doesn't know not to step into traffic or even something as simple as how to hold a fork. 

I know that I will not be able to shelter him forever or even be here for him for his entire life but I want to do the best for him that I can without causing him too much stress or harm.  Losing my job is going to be stressful for our family.  But in many ways it may also be a blessing.

The First Days-Part 1

It's hard now to look back on the time around Carson's birth-so far away and yet still so fresh in my mind.  Excited and nervous about meeting the new little addition to our family.  If only there was a way to go back and talk to the pre-Carson me.  To tell her that things would work out. That yes it's scary but you'll get through it.

When Carson was born they threw him up onto my chest and my husband Mike and I cried at how beautifully perfect he was.  He looked so much like his sister in those initial moments. Joy and elation.  Look what I have created and all that.  The nurse took him over to clean him up and do his newborn assessments and unfortunately there were some medical issues that my OB had to handle with me so I sent my husband over to take pictures.

Looking over at him staring down at his son was a magical moment.  He was smiling and talking to him.  He was such a proud papa.  Something that I will never forget.  That pure happiness on his face.  The snap-shot in my mind forever frozen in time.

Then it all changed. Fast.

Such a whirlwind.  I remember that it seemed like they were taking a long time to get him back to me.  With his sister they kept her for just a few minutes and then she was back in my arms.  Bonding. Counting fingers and toes etc.  I remember that it was very quiet in the room.  Mike back at my side.  The doctor working silently and the nurse with Carson.  My motherly instinct kicked in and I kept asking if he was ok.  He's fine my OB would say without looking at me.  That was my first indication.  That avoided look.

The nurse asked me who my pediatrician was and when I answered she told me that they didn't make hospital visits so they were going to call the hospital pediatrician up to the room.  I think at that point I was starting to panic.  What could be so wrong that he needed a pediatrician?  She told me that I could hold him until they got there.  She avoided eye contact as she handed me my new bundle.  One look at his face and I instantly knew my life had changed forever.  "I think he has Downs." I whispered to my husband trying not to cry.  My entire body going numb.  Mike didn't see it-at first anyway.  I just stared down into Carson's little face trying not to cry.  Still silence.  It felt as if my whole world was crashing in around me.

The rest of the next couple of hours is a blur.  My doctor finally telling me what I already knew.  There was something 'wrong' with my baby. He thought it was Down Syndrome but couldn't be sure.  Asking about prenatal testing-which I had denied because at 28 who honestly expects birth defects?  I remember the pediatrician and his team showing up and studying Carson as if he were an experiment gone awry.  He didn't have an answer for me as he berated me on my drug and alcohol use (which I hadn't done either).  Mike and I were numb.  I remember thinking I just wanted everyone out of the room.  That included Mike.  I wanted so badly to be alone.  They called in a geneticist from Cincinnati Children's Hospital wished us well and left.

Not soon after Mike left to get food and some fresh air leaving me alone with Carson.  I have to be brutally honest here.  I looked into his tiny sleepy face and wondered if I could love him.  Part of me was scared of him.  How could I take care of him?  People with special needs scared me.  They were unpredictable and I didn't like that.  I remember in school being afraid of getting hurt by them.  I couldn't love him.  I didn't want him.  He was broken. 

My nurse came back into the room and tip-toed around me.  I guess the look on my face said it all.  She finally came to me and apologized for the way she had acted.  She said she didn't know what to say so she didn't say anything.  She had tears in her eyes.  She lightly brushed his cheek with the backs of her fingers.  She reminded me that he was probably hungry.  She got a bottle for him and left again.  I couldn't get that touch out of my mind.  It was if she had truly CARED about him.  Something that I as his own mother was denying him.  She will probably never know but that one act of kindness to him snapped me out of my self-pity and made me realize that I was being ridiculous.  This was my son I was holding.  He wasn't broken, just different.  Different and perfect.

Toledo

This weekend my family had an amazing opportunity to travel north from Cincinnati to Toledo to meet up with two other families who have children with 15q24 microdeletion syndrome.  We met on Facebook in a closed group with several other families as well. 

We drove on Friday night and stayed at the Holiday Inn Express in Maumee where we were able to play in the water park there for most of the night.  Back in the hotel room after the water park I spent hours trying to contain Carson.  Having sensory issues made for a long night of crying and him trying to escape.  We told him we were going to bed and he laid in front of the door to the hallway waiting for us to leave.  The deadbolt on the door unlocks when you turn the handle from the inside so we were dependent on the slide arm to keep him in.  Needless to say I was very tired Saturday morning. 

We drove from Maumee to Toledo and had lunch at Tony Packo's.  Klinger from M*A*S*H* was from Toledo and always talked about wanting a hot dog from there.  We sat and talked and watched as our "typical" bonded and got to know each other.  At one point I had Carson reach out and touch one of the other boys because this was probably a once in a lifetime event.  It was so surreal.  To be in a room with two other children when only about 30 in the world have been diagnosed.  Carson was the 9th.  I can't imagine what it would be like to be the first or the second and to have no compass or direction or an idea of where to turn.

We left Tony Packo's and made a caravan to the Toledo Zoo.  We walked around and talked and bonded and got to know each other.   One child is very quiet, stoic and kept to himself while the other was talkative and outgoing.  Energy for days. Diagnosed with autism first he was so far beyond Carson.  He would follow directions and could walk alone.  If that were Carson he would've been off on his own staggering adventure without listening or caring if he would or could get hurt.  At one point Mike had both non-verbal boys laughing so hard.  It was great to see.  It made my heart so much bigger.  I love these people and their children.  We may not be blood related but we're family.  If not a family-we are an army.  An army of people who just want the best for their children whatever that may be. 

We sat and talked and took pictures.  We closed the zoo down.  Amazing that I live 30 minutes from a zoo that ranks in the top 10 in the country, one that can boast about having the greenest restaurant in America none the less and I've never been there more than a couple of hours at a time let alone close it down.  I think it was lucky of us to have parked in the very last spots of the farthest parking lot.  It gave us just a little more time.  I thought that it would be sad.  I thought that I would cry.  I thought and I was wrong.  I walked away with a feeling of fulfillment.  Having a child with any type of disability makes you feel like there's you and then there's everyone else.  This was moms and dads and sibling all looking at each other with an understanding and a promise to do this again next summer.

We then drove a few miles into Michigan.  Something I figured we should do since we were so close.  We drove to Luna Pier where we hit a gas station for chips and drinks and then headed back to Maumee.  It had been such a long day Carson didn't want to play at the water park so Mike just held him while Baylee and I had fun for a bit just us girls.  Back in the room it was the same overwhelming screaming and crying as the night before.  Thankfully from the lack of sleep and the excitement of the day Carson fell asleep relatively quickly and I was soon to follow.

We drove the 3+ hours home this morning.  Stopping only once at my mom's to pick up Baylee's rabbit.  Now home we are enjoying being back in our own environment.  A place where Carson feels safe and comfortable.  He is happy and eating and back to his own routine.  I have learned the hard way this weekend that long trips with him are probably going to be impossible.  We went to Disney in 2010 for a week and stayed in a condo.  He was only 2 at the time, still undiagnosed and we didn't know at the time that the sensory issues were the reason for the crying and the standing on his head.  Or maybe we knew we just didn't understand what his triggers were.  Either way, I don't think it will be fair to him to try to "make" him understand why we aren't going home to go to bed. 

So tonight we sleep in our own beds.  Tomorrow back to a routine he understands.  We are learning as we go.  It may have been rough but it was completely worth it.